Re: [TMIC] Pain management doctor

[a-ryder]

I don't have any pain of spinal origin; my only significant pain is from a torn 
shoulder.
I need the Baclofen to alleviate spasticity in my legs, mostly the left leg.

Alton

- Original Message -
From: heyjude48...@aol.com
To: a-ry...@comcast.net, pjv1...@chartermi.net
Cc: tmic-list@eskimo.com
Sent: Sun, 20 Jan 2013 17:56:10 - (UTC)
Subject: Re: [TMIC] Pain management doctor


Alton, Don't you have 
pain?  What does the Baclofen do for you?  I believe I take it for 
spasms.  Are you taking it for the same thing?  If I don't take it my 
right leg flies out of the bed and if we go out, we have to strap my legs into 
my chair because my feet won't stay on the foot pedals. Love 
you,JudeMichigan In a message dated 1/20/2013 9:29:18 A.M. Eastern Standard 
Time, 
a-ry...@comcast.net writes:I get my 
  intrathecal Baclofen pump refilled by Dr Hyatt at the Pain Clinic at CMC in 
  Manchester, NH.
I do not get treated for 
  pain.

Alton

- Original Message 
  -
From: Pat Voorheis 
To: tmic 
  
Sent: Sat, 19 Jan 2013 01:21:21 - 
  (UTC)
Subject: [TMIC] Pain management doctor

Please tell more about 
  pain management doctors and clinics. Anything would be helpful and good to 
  know. 

Sent from my 
iPad

Re: [TMIC] Pain management doctor

[a-ryder]

My intrathecal pump is by Medtronics; the first [battery] lasted eight years.
It pumps Baclofen for spaticity, not the usual morphine. I get it refilled at 
a pain clinic where they are used to filling pumps.
 
Alton

- Original Message -
From: heyjude48...@aol.com
To: pjv1...@chartermi.net
Cc: tmic-list@eskimo.com
Sent: Sat, 19 Jan 2013 03:56:13 - (UTC)
Subject: Re: [TMIC] Pain management doctor


What do you mean?  I am going to have a pain pump 
put in.  My family Dr. didn't want to be responsible for my pills anymore, 
so she referred me to a pain clinic and the Dr. there recommended the Matrix 
pain pump.   First they will do a trial somehow and then if it 
works a permanent pump will be implanted. Love, Jude In a message dated 
1/18/2013 8:21:26 P.M. Eastern Standard Time, 
pjv1...@chartermi.net writes:Please 
  tell more about pain management doctors and clinics. Anything would be 
helpful 
  and good to know. 

Sent from my 
iPad

Re: [TMIC] Pain management doctor

[john snodgrass]

same for me with the baclofen.


 From: "heyjude48...@aol.com" 
To: a-ry...@comcast.net; pjv1...@chartermi.net 
Cc: tmic-list@eskimo.com 
Sent: Sunday, January 20, 2013 12:56 PM
Subject: Re: [TMIC] Pain management doctor
 

Alton,
 
Don't you have 
pain?  What does the Baclofen do for you?  I believe I take it for 
spasms.  Are you taking it for the same thing?  If I don't take it my 
right leg flies out of the bed and if we go out, we have to strap my legs into 
my chair because my feet won't stay on the foot pedals.
 
Love 
you,
Jude
Michigan
 
In a message dated 1/20/2013 9:29:18 A.M. Eastern Standard Time, 
a-ry...@comcast.net writes:
I get my  intrathecal Baclofen pump refilled by Dr Hyatt at the Pain Clinic at 
CMC in  Manchester, NH.
>I do not get treated for  pain.
>
>Alton
>
>- Original Message 
  -
>From: Pat Voorheis 
>To: tmic 
  
>Sent: Sat, 19 Jan 2013 01:21:21 - 
  (UTC)
>Subject: [TMIC] Pain management doctor
>
>Please tell more about 
  pain management doctors and clinics. Anything would be helpful and good to 
  know. 
>
>Sent from my 
iPad
>

Re: [TMIC] Pain management doctor

[Heyjude48458]

Alton,
 
Don't you have  pain?  What does the Baclofen do for you?  I believe I take 
it for  spasms.  Are you taking it for the same thing?  If I don't take it 
my  right leg flies out of the bed and if we go out, we have to strap my 
legs into  my chair because my feet won't stay on the foot pedals.
 
Love  you,
Jude
Michigan
 
 
In a message dated 1/20/2013 9:29:18 A.M. Eastern Standard Time,  
a-ry...@comcast.net writes:

I get my  intrathecal Baclofen pump refilled by Dr Hyatt at the Pain Clinic 
at CMC in  Manchester, NH.
I do not get treated for  pain.

Alton

- Original Message  -
From: Pat Voorheis 
To: tmic  
Sent: Sat, 19 Jan 2013 01:21:21 -  (UTC)
Subject: [TMIC] Pain management doctor

Please tell more about  pain management doctors and clinics. Anything would 
be helpful and good to  know. 

Sent from my  iPad

Re: [TMIC] Pain management

[Heyjude48458]

Frank,
 
So you don't have the  euphoria with the prescription form?
I wouldn't mind  trying it if that was the case.
 
Jude
 
 
In a message dated 1/20/2013 11:43:03 A.M. Eastern Standard Time,  
jcs...@yahoo.com writes:

 
thats hard to swollow Rob.
back  in the 70's was the last time i purchased an OZ and it was 40 bucks 
an oz for  the good stuff.



 
  

 From: "fr...@franksheldon.com"  
To: Robert Pall  ; tmic-list@eskimo.com 
Sent: Sunday, January 20, 2013 10:05  AM
Subject: Re: [TMIC] Pain  management






I have been prescribed 2 oz of pot per month ...the problem is that the  
"legal" pot is $450 per oz.
But I do agree  that pot truly helps!!!
Rob in  NJ  
 




Sativex is sprayed under my  tongue.  I use it two or three times a day, 
with little euphoria. It's  a legal prescription drug, in Canada and soon to 
be here in the  U.S.

Take  Care




F.

Re: [TMIC] Pain management

[john snodgrass]

thats hard to swollow Rob.
back in the 70's was the last time i purchased an OZ and it was 40 bucks an oz 
for the good stuff.



 From: "fr...@franksheldon.com" 
To: Robert Pall ; tmic-list@eskimo.com 
Sent: Sunday, January 20, 2013 10:05 AM
Subject: Re:  [TMIC] Pain management
 

 

>I have been prescribed 2 oz of pot per month ...the problem is that the 
>"legal" pot is $450 per oz.
>But I do agree that pot truly helps!!!
>Rob in NJ
Sativex is sprayed under my tongue.  I use it two or three times a day, with 
little euphoria. It's a legal prescription drug, in Canada and soon to be here 
in the U.S.
Take Care

>
F.

Re: [TMIC] Pain management

[frank]

I have been prescribed 2 oz of pot per month ...the problem is that the "legal" 
pot is $450 per oz.
But I do agree that pot truly helps!!!
Rob in NJ

Sativex is sprayed under my tongue. I use it two or three times a day, with 
little euphoria. It's a legal prescription drug, in Canada and soon to be here 
in the U.S.Take Care
F.

Re: [TMIC] Pain management doctor

[a-ryder]

I get my intrathecal Baclofen pump refilled by Dr Hyatt at the Pain Clinic at 
CMC in Manchester, NH.
I do not get treated for pain.

Alton

- Original Message -
From: Pat Voorheis 
To: tmic 
Sent: Sat, 19 Jan 2013 01:21:21 - (UTC)
Subject: [TMIC] Pain management doctor

Please tell more about pain management doctors and clinics. Anything would be 
helpful and good to know. 

Sent from my iPad

Re: [TMIC] Pain management

[john snodgrass]

a couple of years ago it didnt help me but it does nowodd



 From: Robert Pall 
To: fr...@franksheldon.com; heyjude48...@aol.com; pjv1...@chartermi.net 
Cc: tmic-list@eskimo.com 
Sent: Saturday, January 19, 2013 7:42 PM
Subject: Re: [TMIC] Pain management
 

I have been prescribed 2 oz of pot per month ...the problem is that the "legal" 
pot is $450 per oz.
But I do agree that pot truly helps!!!
Rob in NJ




-Original Message-
From: frank 
To: Heyjude48458 ; pjv1234 
Cc: tmic-list 
Sent: Sat, Jan 19, 2013 2:32 pm
Subject: Re:  [TMIC] Pain management


 
Hey,

Pumps don't allways work.

Don't let them talk you out of pain.

Consider Cannabis, or Sativex if you live in Canabis

Try things

Frank

Who takes Nortriptolin, Dextromethorphin, Phenobarbitol,Sativex; uses self 
hypnosis/meditation.

Re: [TMIC] Pain management doctor

[Heyjude48458]

So, how did you hook  up with a Physicians Assistant?  I now have home 
nursing and wouldn't want  to lose that.
 
 
In a message dated 1/19/2013 6:59:51 P.M. Eastern Standard Time,  
pjv1...@chartermi.net writes:

I have been to a Physicians Assistant twice. My primary moved, his  
replacement wouldn't renew my rx for Lyrica and Baclofen.  I didn't like  her 
at 
all.  Dr Hagenstein suggested Dr Alton or his Nurse Practioner in  Montrose, 
but neither were taking new patients when I called in November.  Maybe 
because of all the health care changes. The PA is caring and I could be  open 
with 
her. I would still like to see the Nurse Practioner in Montrose if  she 
starts taking near patients someday. 


patti

Sent from my iPad

On Jan 19, 2013, at 5:46 PM, _Heyjude48458@aol.com_ 
(mailto:heyjude48...@aol.com)   wrote:



 
Patti,
 
Thank you.   Yes, the Dr. I see is with McLaren.  His name is Dr. Sabit, in 
 Lapeer.  His home office is in Southfield.  His number is:   810-667-7318 
if Dr. Hagenstein wants to talk to him, but I don't know if  that's such a 
good idea.
 
Dr Sabit is the  pain management Dr. who is taking over my medications and 
giving me the pain  pump.
 
I wish I was  seeing Dr. Hagenstein again.  I liked him so much.  Who is 
your  primary physician?
 
Love,
Jude
 
 
In a message dated 1/19/2013 3:01:57 P.M. Eastern Standard Time, 
_pjv1234@chartermi.net_ (mailto:pjv1...@chartermi.net)  writes:

Judy, 
Where is the pain clinic. I suppose its part of McLaren?  What  doctor did 
you see?  I think doctors have restrictions on how much  pain med they can 
write rx for. It seems primaries in this area or those  who belong to the 
McLaren group are being cautious. The primary that  wouldn't renew my meds is 
with  McLaren. That's why I had to see the  new Neuro. I see Dr Hagenstein in 
February and will ask him if a pain  clinic is advisable. 


Patti - Montrose

Sent from my iPad

On Jan 18, 2013, at 10:56 PM, _Heyjude48458@aol.com_ 
(mailto:heyjude48...@aol.com)   wrote:



 
What do you mean?  I am going to have a  pain pump put in.  My family Dr. 
didn't want to be responsible for  my pills anymore, so she referred me to a 
pain clinic and the Dr. there  recommended the Matrix pain pump.   First 
they will do a  trial somehow and then if it works a permanent pump will be  
implanted.
 
Love, 
Jude
 
 
In a message dated 1/18/2013 8:21:26 P.M. Eastern Standard Time, 
_pjv1234@chartermi.net_ (mailto:pjv1...@chartermi.net)   writes:

Please tell more about pain management doctors and clinics.  Anything would 
be helpful and good to know. 

Sent from my  iPad

Re: [TMIC] Pain management

[Heyjude48458]

Wow, does your  insurance pay for any of it?
 
 
In a message dated 1/19/2013 7:42:27 P.M. Eastern Standard Time,  
robthe...@aol.com writes:

I have been prescribed 2 oz of pot  per month ...the problem is that the 
"legal" pot is $450 per oz.
But I do agree that pot truly helps!!!
Rob in  NJ






-Original  Message-
From: frank 
To: Heyjude48458  ; pjv1234 
Cc:  tmic-list 
Sent: Sat, Jan 19, 2013 2:32  pm
Subject: Re: [TMIC] Pain management



Hey,


Pumps don't allways work.


Don't let them talk you out of pain.


Consider Cannabis, or Sativex if you live in Canabis


Try things


Frank


Who takes Nortriptolin, Dextromethorphin, Phenobarbitol,Sativex; uses  self 
 hypnosis/meditation.

Re: [TMIC] Pain management

[Robert Pall]

I have been prescribed 2 oz of pot per month ...the problem is that the "legal" 
pot is $450 per oz.
But I do agree that pot truly helps!!!
Rob in NJ

 

 

 

-Original Message-
From: frank 
To: Heyjude48458 ; pjv1234 
Cc: tmic-list 
Sent: Sat, Jan 19, 2013 2:32 pm
Subject: Re:  [TMIC] Pain management


 
Hey,


Pumps don't allways work.


Don't let them talk you out of pain.


Consider Cannabis, or Sativex if you live in Canabis


Try things


Frank


Who takes Nortriptolin, Dextromethorphin, Phenobarbitol,Sativex; uses self 
hypnosis/meditation.
 

Re: [TMIC] Pain management doctor

[Heyjude48458]

Patti,
 
Thank you.  Yes,  the Dr. I see is with McLaren.  His name is Dr. Sabit, in 
Lapeer.  His  home office is in Southfield.  His number is:  810-667-7318 
if Dr.  Hagenstein wants to talk to him, but I don't know if that's such a 
good  idea.
 
Dr Sabit is the pain  management Dr. who is taking over my medications and 
giving me the pain  pump.
 
I wish I was seeing  Dr. Hagenstein again.  I liked him so much.  Who is 
your primary  physician?
 
Love,
Jude
 
 
In a message dated 1/19/2013 3:01:57 P.M. Eastern Standard Time,  
pjv1...@chartermi.net writes:

Judy, 
Where is the pain clinic. I suppose its part of McLaren?  What  doctor did 
you see?  I think doctors have restrictions on how much pain  med they can 
write rx for. It seems primaries in this area or those who belong  to the 
McLaren group are being cautious. The primary that wouldn't renew my  meds is 
with  McLaren. That's why I had to see the new Neuro. I see Dr  Hagenstein in 
February and will ask him if a pain clinic is  advisable. 


Patti - Montrose

Sent from my iPad

On Jan 18, 2013, at 10:56 PM, _Heyjude48458@aol.com_ 
(mailto:heyjude48...@aol.com)   wrote:



 
What do you mean?  I am going to have a pain  pump put in.  My family Dr. 
didn't want to be responsible for my pills  anymore, so she referred me to a 
pain clinic and the Dr. there recommended  the Matrix pain pump.   First 
they will do a trial somehow  and then if it works a permanent pump will be  
implanted.
 
Love, 
Jude
 
 
In a message dated 1/18/2013 8:21:26 P.M. Eastern Standard Time, 
_pjv1234@chartermi.net_ (mailto:pjv1...@chartermi.net)  writes:

Please tell more about pain management doctors and clinics.  Anything would 
be helpful and good to know. 

Sent from my  iPad

Re: [TMIC] Pain management

[Heyjude48458]

Frank,
 
I wondered what had  become of you.  It's been years since we have talked.  
What have you  been doing?  What have you been up to?
 
How have you been  feeling?  Not much pain I guess, 'cause you smoke  
cannabis.
 
Are you on Facebook,  with Bernie and Kevin?  I don't see you post there.  
We are in  Transverse Myelitis and Transverse Myelitis Folks (the one Kevin 
and Scott  Pruitt started).
 
Good to hear from  you,
Jude in  Michigan
Neurontin,  Gabapentin, Oxycodone, MS Contin and several other things.
 
 
In a message dated 1/19/2013 2:32:08 P.M. Eastern Standard Time,  
fr...@franksheldon.com writes:

 
Hey,


Pumps don't allways work.


Don't let them talk you out of pain.


Consider Cannabis, or Sativex if you live in Canabis


Try things


Frank


Who takes Nortriptolin, Dextromethorphin, Phenobarbitol,Sativex; uses  self 
hypnosis/meditation.

Re: [TMIC] Pain management doctor

[Heyjude48458]

Janice,
 
Would you ask your  Dr. if he would be willing to call Dr. Sabit in Lapeer, 
Michigan...810-667-7318  and tell him what he did for you?  I'm not sure 
which would work better for  me, the medication or the magnets.  I have a 
feeling that the medicine is  better for me.
 
Love,
Jude
 
 
In a message dated 1/19/2013 1:34:59 P.M. Eastern Standard Time,  
jan...@centurytel.net writes:

 
Yes, I research it.The doc explained to  me that with the injections 
that I needed for pain relief that at some point  it would quit working for 
me.   Your body gets used to  it.
This way, I don’t take extra meds for pain relief, plus it  makes my legs 
feel much stronger.  My doc has  been one of the forerunners with this 
procedure and has taught  other
doc’s in other places.Don’t know how wide  spread it is.
Janice
 
 
 

 
From: _Heyjude48458@aol.com_ (mailto:heyjude48...@aol.com)  
Sent: Saturday, January 19, 2013 11:23 AM
To: _jannic@centurytel.net_ (mailto:jan...@centurytel.net)  
Cc: _tmic-list@eskimo.com_ (mailto:tmic-list@eskimo.com)  
Subject: Re: [TMIC] Pain management doctor


 

 
Janice,
 
I didn't realize  that you have an implant for pain.  Did we discuss it?  I 
don't  remember.  Anyway, why did you decide to have the magnets for pain  
management vs. the medication delivery from the pump?
 
I wonder what the  benefits are in having one over the other.  When I 
brought it up to my  Dr. she didn't even mention the magnets vs. the  
medication.
 
Did you have a  choice in the matter?  Did you research the two before you 
had it  done?
 
Thanks,
Jude,  Michigan
 
 
In a message dated 1/18/2013 11:48:47 P.M. Eastern Standard Time,  
jan...@centurytel.net writes:

Pat,
I have been going to a pain management doc for 4 years  and they have 
helped 
me tremendously with pain.I have  an implant in my hip/back area that 
is 
connected to my  spine.   I turn on the implant with
a magnet that I touch where  my implant is.It uses several - my choice 
-  
sensations to cover nerve pain from my back down to my  ankles.   It also 
gives my legs more strength to keep walking  and they feel stronger too.
I would not be walking nearly as much as I do  without it.
Janice


-Original Message- 
From: Pat  Voorheis
Sent: Friday, January 18, 2013 7:21 PM
To: tmic
Subject:  [TMIC] Pain management doctor

Please tell more about pain management  doctors and clinics. Anything would 
be helpful and good to  know.

Sent from my  iPad

Re: [TMIC] Pain management doctor

[Heyjude48458]

Janice, thank you,  that explains it all.  Love you.
 
 
In a message dated 1/19/2013 1:27:29 P.M. Eastern Standard Time,  
jan...@centurytel.net writes:

 
Jude – and all TM’ers
When I was referred to a pain management doc by another doc  that told me 
he had exhausted all his “tricks” for pain, my new doc started  doing 
injections in my back to relieve pain from
both arthritis and TM – they just irritated each other at my  expense.   
The injections only lasted about 3 months, then another  was needed-badly. 
After awhile, he suggested that I  try the
implant from the outside of my body before he implanted the  implant, 
trying as close as possible to find if this would help me before  implantation. 
  
 I did have help from it, so we decided  to
go all the way with  it.  This is how it is  done:
 
I was put to sleep for the procedure.A  small needle-like thing with “
legs” was attached to my spine.Then, attached to the legs of the 
needle-like thing, was the implant which was  placed
a little under the skin of the back/hip area.   It  is about 1” big and 
cannot be seen outside of the skin. There is a slight bump where it is 
located. On that  bump is where I touch with the magnet
to “turn myself on or off”.   It creates different  sensations from a 
fuzzy feeling to a strong bumping feeling to help cover  nerve pain.I 
control what sensation I want and how strong I  want it with
another small hand-held appliance.When I  sit or lay down, I always 
turn it off  -  it is just more  comfortable that way.  I would not be 
walking  nearly as much without it and would have much
more pain. Our  insurance covered almost all of it.I do know a lady 
with TM  that tried it and it did not work for her, but most do get  relief.
 
Any more questions  -  just ask me.
Janice
 
 
 
 

 
From: _Heyjude48458@aol.com_ (mailto:heyjude48...@aol.com)  
Sent: Saturday, January 19, 2013 11:17 AM
To: _jannic@centurytel.net_ (mailto:jan...@centurytel.net)  
Cc: _tmic-list@eskimo.com_ (mailto:tmic-list@eskimo.com)  ; 
_pv123@chartermi.net_ (mailto:pv...@chartermi.net)  
Subject: Re: [TMIC] Pain management doctor


 

 
Janice,
I didn't know that  you have an implant for pain.  How do the magnets 
differ from the pain  medication pump.  You say it is effective for you.  
That's  
great!  What made you make the choice between the two different types of  
implants?
 
Love,
Jude
 
 
In a message dated 1/18/2013 11:48:47 P.M. Eastern Standard Time,  
jan...@centurytel.net writes:

Pat,
I  have been going to a pain management doc for 4 years and they have 
helped  
me tremendously with pain.I have an implant in my  hip/back area that 
is 
connected to my spine.   I turn on the  implant with
a magnet that I touch where my implant is. It uses several - my choice 
- 
sensations to cover nerve pain from my  back down to my ankles.   It also 
gives my legs more strength  to keep walking and they feel stronger too.
I would not be walking nearly  as much as I do without it.
Janice


-Original Message-  
From: Pat Voorheis
Sent: Friday, January 18, 2013 7:21 PM
To:  tmic
Subject: [TMIC] Pain management doctor

Please tell more about  pain management doctors and clinics. Anything would 
be helpful and good  to know.

Sent from my  iPad

Re: [TMIC] Pain management doctor

[Heyjude48458]

Thanks  Janice,
That certainly  explains everything.
 
 
In a message dated 1/19/2013 1:27:29 P.M. Eastern Standard Time,  
jan...@centurytel.net writes:

 
Jude – and all TM’ers
When I was referred to a pain management doc by another doc  that told me 
he had exhausted all his “tricks” for pain, my new doc started  doing 
injections in my back to relieve pain from
both arthritis and TM – they just irritated each other at my  expense.   
The injections only lasted about 3 months, then another  was needed-badly. 
After awhile, he suggested that I  try the
implant from the outside of my body before he implanted the  implant, 
trying as close as possible to find if this would help me before  implantation. 
  
 I did have help from it, so we decided  to
go all the way with  it.  This is how it is  done:
 
I was put to sleep for the procedure.A  small needle-like thing with “
legs” was attached to my spine.Then, attached to the legs of the 
needle-like thing, was the implant which was  placed
a little under the skin of the back/hip area.   It  is about 1” big and 
cannot be seen outside of the skin. There is a slight bump where it is 
located. On that  bump is where I touch with the magnet
to “turn myself on or off”.   It creates different  sensations from a 
fuzzy feeling to a strong bumping feeling to help cover  nerve pain.I 
control what sensation I want and how strong I  want it with
another small hand-held appliance.When I  sit or lay down, I always 
turn it off  -  it is just more  comfortable that way.  I would not be 
walking  nearly as much without it and would have much
more pain. Our  insurance covered almost all of it.I do know a lady 
with TM  that tried it and it did not work for her, but most do get  relief.
 
Any more questions  -  just ask me.
Janice
 
 
 
 

 
From: _Heyjude48458@aol.com_ (mailto:heyjude48...@aol.com)  
Sent: Saturday, January 19, 2013 11:17 AM
To: _jannic@centurytel.net_ (mailto:jan...@centurytel.net)  
Cc: _tmic-list@eskimo.com_ (mailto:tmic-list@eskimo.com)  ; 
_pv123@chartermi.net_ (mailto:pv...@chartermi.net)  
Subject: Re: [TMIC] Pain management doctor


 

 
Janice,
I didn't know that  you have an implant for pain.  How do the magnets 
differ from the pain  medication pump.  You say it is effective for you.  
That's  
great!  What made you make the choice between the two different types of  
implants?

 
Love,
Jude
 
 
In a message dated 1/18/2013 11:48:47 P.M. Eastern Standard Time,  
jan...@centurytel.net writes:

Pat,
I  have been going to a pain management doc for 4 years and they have 
helped  
me tremendously with pain.I have an implant in my  hip/back area that 
is 
connected to my spine.   I turn on the  implant with
a magnet that I touch where my implant is. It uses several - my choice 
- 
sensations to cover nerve pain from my  back down to my ankles.   It also 
gives my legs more strength  to keep walking and they feel stronger too.
I would not be walking nearly  as much as I do without it.
Janice


-Original Message-  
From: Pat Voorheis
Sent: Friday, January 18, 2013 7:21 PM
To:  tmic
Subject: [TMIC] Pain management doctor

Please tell more about  pain management doctors and clinics. Anything would 
be helpful and good  to know.

Sent from my  iPad

Re: [TMIC] Pain management

[frank]

Hey,


Pumps don't allways work.


Don't let them talk you out of pain.


Consider Cannabis, or Sativex if you live in Canabis


Try things


Frank


Who takes Nortriptolin, Dextromethorphin, Phenobarbitol,Sativex; uses self 
hypnosis/meditation.

Re: [TMIC] Pain management doctor

[Janice Nichols]

Jude – and all TM’ers
When I was referred to a pain management doc by another doc that told me he had 
exhausted all his “tricks” for pain, my new doc started doing injections in my 
back to relieve pain from
both arthritis and TM – they just irritated each other at my expense.   The 
injections only lasted about 3 months, then another was needed-badly. After 
awhile, he suggested that I try the
implant from the outside of my body before he implanted the implant, trying as 
close as possible to find if this would help me before implantation.I did 
have help from it, so we decided to
go all the way with it.  This is how it is done:

I was put to sleep for the procedure.A small needle-like thing with “legs” 
was attached to my spine.   Then, attached to the legs of the needle-like 
thing, was the implant which was placed
a little under the skin of the back/hip area.   It is about 1” big and cannot 
be seen outside of the skin.There is a slight bump where it is located. 
On that bump is where I touch with the magnet
to “turn myself on or off”.   It creates different sensations from a fuzzy 
feeling to a strong bumping feeling to help cover nerve pain.I control what 
sensation I want and how strong I want it with
another small hand-held appliance.When I sit or lay down, I always turn it 
off  -  it is just more comfortable that way.  I would not be walking 
nearly as much without it and would have much
more pain. Our insurance covered almost all of it.I do know a lady with 
TM that tried it and it did not work for her, but most do get relief.

Any more questions  -  just ask me.
Janice



From: heyjude48...@aol.com 
Sent: Saturday, January 19, 2013 11:17 AM
To: jan...@centurytel.net 
Cc: tmic-list@eskimo.com ; pv...@chartermi.net 
Subject: Re: [TMIC] Pain management doctor

Janice,
I didn't know that you have an implant for pain.  How do the magnets differ 
from the pain medication pump.  You say it is effective for you.  That's great! 
 What made you make the choice between the two different types of implants?

Love,
Jude

In a message dated 1/18/2013 11:48:47 P.M. Eastern Standard Time, 
jan...@centurytel.net writes:
  Pat,
  I have been going to a pain management doc for 4 years and they have helped 
  me tremendously with pain.I have an implant in my hip/back area that is 
  connected to my spine.   I turn on the implant with
  a magnet that I touch where my implant is.It uses several - my choice - 
  sensations to cover nerve pain from my back down to my ankles.   It also 
  gives my legs more strength to keep walking and they feel stronger too.
  I would not be walking nearly as much as I do without it.
  Janice


  -Original Message- 
  From: Pat Voorheis
  Sent: Friday, January 18, 2013 7:21 PM
  To: tmic
  Subject: [TMIC] Pain management doctor

  Please tell more about pain management doctors and clinics. Anything would 
  be helpful and good to know.

  Sent from my iPad

Re: [TMIC] Pain management doctor

[Heyjude48458]

Janice,
 
I didn't realize that  you have an implant for pain.  Did we discuss it?  I 
don't  remember.  Anyway, why did you decide to have the magnets for pain  
management vs. the medication delivery from the pump?
 
I wonder what the  benefits are in having one over the other.  When I 
brought it up to my Dr.  she didn't even mention the magnets vs. the medication.
 
Did you have a choice  in the matter?  Did you research the two before you 
had it  done?
 
Thanks,
Jude,  Michigan
 
 
In a message dated 1/18/2013 11:48:47 P.M. Eastern Standard Time,  
jan...@centurytel.net writes:

Pat,
I have been going to a pain management doc for 4 years and  they have 
helped 
me tremendously with pain.I have an implant  in my hip/back area that 
is 
connected to my spine.   I turn on  the implant with
a magnet that I touch where my implant is.It  uses several - my choice 
- 
sensations to cover nerve pain from my back  down to my ankles.   It also 
gives my legs more strength to keep  walking and they feel stronger too.
I would not be walking nearly as much  as I do without it.
Janice


-Original Message- 
From:  Pat Voorheis
Sent: Friday, January 18, 2013 7:21 PM
To: tmic
Subject:  [TMIC] Pain management doctor

Please tell more about pain management  doctors and clinics. Anything would 
be helpful and good to  know.

Sent from my  iPad

Re: [TMIC] Pain management doctor

[Heyjude48458]

Janice,
I didn't know that  you have an implant for pain.  How do the magnets 
differ from the pain  medication pump.  You say it is effective for you.  
That's  
great!  What made you make the choice between the two different types of  
implants?
 
Love,
Jude
 
 
In a message dated 1/18/2013 11:48:47 P.M. Eastern Standard Time,  
jan...@centurytel.net writes:

Pat,
I have  been going to a pain management doc for 4 years and they have 
helped 
me  tremendously with pain.I have an implant in my hip/back area  that 
is 
connected to my spine.   I turn on the implant with
a  magnet that I touch where my implant is.It uses several - my  choice 
- 
sensations to cover nerve pain from my back down to my  ankles.   It also 
gives my legs more strength to keep walking  and they feel stronger too.
I would not be walking nearly as much as I do  without it.
Janice


-Original Message- 
From: Pat  Voorheis
Sent: Friday, January 18, 2013 7:21 PM
To: tmic
Subject:  [TMIC] Pain management doctor

Please tell more about pain management  doctors and clinics. Anything would 
be helpful and good to  know.

Sent from my  iPad

Re: [TMIC] Pain management doctor

[Janice Nichols]

Pat,
I have been going to a pain management doc for 4 years and they have helped 
me tremendously with pain.I have an implant in my hip/back area that is 
connected to my spine.   I turn on the implant with
a magnet that I touch where my implant is.It uses several - my choice - 
sensations to cover nerve pain from my back down to my ankles.   It also 
gives my legs more strength to keep walking and they feel stronger too.

I would not be walking nearly as much as I do without it.
Janice


-Original Message- 
From: Pat Voorheis

Sent: Friday, January 18, 2013 7:21 PM
To: tmic
Subject: [TMIC] Pain management doctor

Please tell more about pain management doctors and clinics. Anything would 
be helpful and good to know.


Sent from my iPad

Re: [TMIC] Pain management doctor

[Heyjude48458]

What do you mean?  I am going to have a pain pump  put in.  My family Dr. 
didn't want to be responsible for my pills anymore,  so she referred me to a 
pain clinic and the Dr. there recommended the Matrix  pain pump.   First 
they will do a trial somehow and then if it  works a permanent pump will be 
implanted.
 
Love, 
Jude
 
 
In a message dated 1/18/2013 8:21:26 P.M. Eastern Standard Time,  
pjv1...@chartermi.net writes:

Please  tell more about pain management doctors and clinics. Anything would 
be helpful  and good to know. 

Sent from my  iPad

[TMIC] Pain management doctor

[Pat Voorheis]

Please tell more about pain management doctors and clinics. Anything would be 
helpful and good to know. 

Sent from my iPad

RE: [TMIC] Pain

[Carol E]

Try sitting and relaxing!


Carol 
Worrying does not empty 
tomorrow of its troubles;
It empties today of its strengths. 

 
 Date: Thu, 9 Feb 2012 07:38:49 -0500
Subject: Re: [TMIC] Pain
From: malugss...@gmail.com
To: skle...@cox.net; jan...@centurytel.net
CC: tmic-list@eskimo.com



Don't think it's just you ladies;
I stand in front of the porcelain throne, with my legs aching, waiting, and 
begging, "Please, please …."
Dalton 
From:  Susan Kleinz 
Date:  Wed, 8 Feb 2012 20:57:45 -0700
To:  Janice Nichols 
Cc:  
Subject:  Re: [TMIC] Pain
Resent-From:  
Resent-Date:  Wed, 8 Feb 2012 20:44:53 -0800


no, but it takes me a long time to pee!
On Feb 6, 2012, at 6:12 PM, Janice Nichols wrote:   Ladies,   Do any of you 
have burning sensations or spasms around/in your urethra? I do, and have 
since TM struck. I also feel a spasm in the urethra when I need to urinate.
Does any of this sound familiar?   Janice
  

Re: [TMIC] Pain

[Susan Kleinz]

Janice - might be time for a urologist?
On Feb 11, 2012, at 3:39 PM, Janice Nichols wrote:

I can pee, I just have constant, burning “discomfort” on the  
urethra.Hope to get it taken care of.

Janice


From: Emily
Sent: Thursday, February 09, 2012 7:01 AM
To: 'Dalton Garis' ; 'Susan Kleinz' ; 'Janice Nichols'
Cc: tmic-list@eskimo.com
Subject: RE: [TMIC] Pain

My husband is permanently catherized because of the same reason.   
It just wouldn’t work anymore….to pee with or anything else …LOL


From: Dalton Garis [mailto:malugss...@gmail.com]
Sent: Thursday, February 09, 2012 7:39 AM
To: Susan Kleinz; Janice Nichols
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] Pain

Don't think it's just you ladies;

I stand in front of the porcelain throne, with my legs aching,  
waiting, and begging, "Please, please …."


Dalton

From: Susan Kleinz 
Date: Wed, 8 Feb 2012 20:57:45 -0700
To: Janice Nichols 
Cc: 
Subject: Re: [TMIC] Pain
Resent-From: 
Resent-Date: Wed, 8 Feb 2012 20:44:53 -0800

no, but it takes me a long time to pee!
On Feb 6, 2012, at 6:12 PM, Janice Nichols wrote:


Ladies,

Do any of you have burning sensations or spasms around/in your  
urethra? I do, and have since TM struck.
I also feel a spasm in the urethra when I need to urinate.Does  
any of this sound familiar?


Janice

RE: [TMIC] Pain

[Emily]

My husband is permanently catherized because of the same reason.  It just
wouldn't work anymore..to pee with or anything else .LOL

 

  _  

From: Dalton Garis [mailto:malugss...@gmail.com] 
Sent: Thursday, February 09, 2012 7:39 AM
To: Susan Kleinz; Janice Nichols
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] Pain

 

Don't think it's just you ladies;

 

I stand in front of the porcelain throne, with my legs aching, waiting, and
begging, "Please, please .."

 

Dalton 

 

From: Susan Kleinz 
Date: Wed, 8 Feb 2012 20:57:45 -0700
To: Janice Nichols 
Cc: 
Subject: Re: [TMIC] Pain
Resent-From: 
Resent-Date: Wed, 8 Feb 2012 20:44:53 -0800

 

no, but it takes me a long time to pee!

On Feb 6, 2012, at 6:12 PM, Janice Nichols wrote:





Ladies,

 

Do any of you have burning sensations or spasms around/in your urethra?
I do, and have since TM struck.

I also feel a spasm in the urethra when I need to urinate.Does any of
this sound familiar?

 

Janice

 

Re: [TMIC] Pain

[Dalton Garis]

Don't think it's just you ladies;

I stand in front of the porcelain throne, with my legs aching, waiting, and
begging, "Please, please Š."

Dalton 

From:  Susan Kleinz 
Date:  Wed, 8 Feb 2012 20:57:45 -0700
To:  Janice Nichols 
Cc:  
Subject:  Re: [TMIC] Pain
Resent-From:  
Resent-Date:  Wed, 8 Feb 2012 20:44:53 -0800

no, but it takes me a long time to pee!
On Feb 6, 2012, at 6:12 PM, Janice Nichols wrote:

>  
>  
>  
> Ladies,
>  
>  
>  
> Do any of you have burning sensations or spasms around/in your urethra? I
> do, and have since TM struck.
>  
> I also feel a spasm in the urethra when I need to urinate.Does any of this
> sound familiar?
>  
>  
>  
> Janice

Re: [TMIC] Pain

[Susan Kleinz]

no, but it takes me a long time to pee!
On Feb 6, 2012, at 6:12 PM, Janice Nichols wrote:


Ladies,

Do any of you have burning sensations or spasms around/in your  
urethra? I do, and have since TM struck.
I also feel a spasm in the urethra when I need to urinate.Does  
any of this sound familiar?


Janice

[TMIC] Pain

[Janice Nichols]

Ladies,

Do any of you have burning sensations or spasms around/in your urethra? I 
do, and have since TM struck.
I also feel a spasm in the urethra when I need to urinate.Does any of this 
sound familiar?

Janice

Re: [TMIC] Pain Pump

[Alton Ryder]

I have.

Both were 
Baclofen, one a replacement for the other to get new batteries.

Medtronics, the manufacturer, is the authority on using both meds mixed.

Alton
On Sep 4, 2010, at 2:30 PM, ladyno...@aol.com wrote:

>  had the pump removed and reinstalled? 

Re: [TMIC] Pain Pump

[ladynotes]

Thank you Todd, for the information and the prayers


Have a Blessed Day, Naomi



-Original Message-
From: Todd Tarno 
To: LadyNotes 
Sent: Mon, Aug 30, 2010 2:33 pm
Subject: Fw: [TMIC] Pain Pump




Hey Naomi,
They should be able to replace the pump, if there isn't too much scare tissue 
to but it back in with pain medication.
Sorry to hear that you need it.
Good Luck, and you will be praying for you,
Todd in CC, TX

--- On Mon, 8/30/10, ladyno...@aol.com  wrote:


From: ladyno...@aol.com 
Subject: [TMIC] Pain Pump
To: quad-l...@eskimo.com, tmic-list@eskimo.com
Date: Monday, August 30, 2010, 1:02 AM


I had a baclofen pump removed last September 11, due to complications with it. 
At the time of removal, I was told that I could not have it put back in. But 
what I did not know at the time, was that I could get pain medicine put 
directly into the pump also. Now I'm considering having the pump put back in 
just for the pain medicine. My question is, has anyone ever had the pump 
removed and reinstalled? I would normally be concerned about them fooling 
around with my spinal cord, but I'm already a quadriplegic, completely 
paralyzed on the right side and minimal, nonfunctional, use on the left side. 
My only concern would be that they would something affect my brain.

Naomi.

Re: [TMIC] Pain Pump

[ladynotes]

Cindy, no, I'm not talking about the meds versus one another, I'm talking about 
using the same pump for the pain meds instead of baclofen. I couldn't imagine 
having two pumps. That's a lot of hardware in the body. Twice the chance for 
infections. Yes, I agree with you, this is some life we live. So many changes 
to the body, choices to choose from, and decisions to make


Have a Blessed Day, Naomi



-Original Message-
From: Cindy McLeroy 
To: LadyNotes 
Sent: Mon, Aug 30, 2010 4:17 pm
Subject: Re: [TMIC] Pain Pump


Hi, are you talking about the baclofen meds vs pain meds?  I don't have either 
one, but thought your question interesting.  I had a friend that I believe had 
2 pumps, one for each.  He ended up removing them both because of 
complications.  Would the same pump work for pain meds?  This is some life we 
lead sometimes, isn't it.
  
Best of luck with your decision.  Know it will be a difficult one.
Cindy McLeroy

- Original Message - 
From: ladyno...@aol.com 
To: quad-l...@eskimo.com ; tmic-list@eskimo.com 
Sent: Sunday, August 29, 2010 11:02 PM
Subject: [TMIC] Pain Pump


I had a baclofen pump removed last September 11, due to complications with it. 
At the time of removal, I was told that I could not have it put back in. But 
what I did not know at the time, was that I could get pain medicine put 
directly into the pump also. Now I'm considering having the pump put back in 
just for the pain medicine. My question is, has anyone ever had the pump 
removed and reinstalled? I would normally be concerned about them fooling 
around with my spinal cord, but I'm already a quadriplegic, completely 
paralyzed on the right side and minimal, nonfunctional, use on the left side. 
My only concern would be that they would something affect my brain.

Naomi.

[TMIC] Pain Pump

[LadyNotes]

I had a baclofen pump removed last September 11, due to  complications with 
it. At the time of removal, I was told that I could not have  it put back 
in. But what I did not know at the time, was that I could get pain  medicine 
put directly into the pump also. Now I'm considering having the pump  put 
back in just for the pain medicine. My question is, has anyone ever had the  
pump removed and reinstalled? I would normally be concerned about them 
fooling  around with my spinal cord, but I'm already a quadriplegic, completely 
paralyzed  on the right side and minimal, nonfunctional, use on the left side. 
My only  concern would be that they would something affect my  brain.

Naomi.

Re: [TMIC] pain management ideas

[Janice Nichols]

The way things never go right for me, hypnosis scares the hell out of me!
Janice



From: john snodgrass 
Sent: Sunday, August 15, 2010 2:58 PM
To: fr...@franksheldon.com 
Cc: transverse myelitis 
Subject: Re: [TMIC] pain management ideas


  hypnosis sounds pretty cool as long as it doesn't take me back to the 
time i was a paperboy being chased by the crazy dog!

  --- On Sun, 8/15/10, fr...@franksheldon.com  
wrote:


From: fr...@franksheldon.com 
Subject: Re: [TMIC] pain management ideas
To: "john snodgrass" , "Dennis Rabalais" 

Cc: "transverse myelitis" 
Date: Sunday, August 15, 2010, 9:45 AM





Hi All,


I'm not going to go over my pain meds ( Nortriptyline, Vitamin D, 
Dextromethorphan, Cannabinoids, Phenobarbital) again.


My pain never really goes away unless I add a couple shots of Bourbon 
or other high test drinks.  I am able to keep my pain at #2 or 3 with meds.


What really helps is meditation (self hypnosis).  I usually listen to 
quiet classical music, close my eyes and take myself away to some secluded 
beach in the Exuma chain of islands. My pain will get as low as #1. I am told 
that there are CD's in which guided imagery is used to take you into self 
hypnosis.


I hope this helps.


F 

Re: Fwd: [TMIC] pain management ideas

[john snodgrass]

that certainly covers a large amount of property ;)

--- On Sun, 8/15/10, Akua  wrote:

From: Akua 
Subject: Re: Fwd: [TMIC] pain management ideas
To: tmic-list@eskimo.com
Date: Sunday, August 15, 2010, 8:47 PM


Re: Fwd: [TMIC] pain management
ideasBrilliant Betty


this is great!







10mg Baclofen (up to
3x/d),Lyrica,Xanax Embeda, Percocet,
Tegretol Amantadine 100mg 2X/d, Cymbalta 60mg, Zanaflex
4mg,Tranxene 7.5mg, Darvacet
Amatryptaline,Gabapentin,Synthroid,Loratadine,Miralax Amitriptyline
(Elavil) 50mg, Tramadol, Lyrica, Wellbutrin Apitherapy Avonex, Betaseron,
Copaxone, Lyrica 150mg/d, Cymbalta 60mg/d; Ambien a/n Baclofen
Baclofen Baclofen Baclofen Baclofen Baclofen Baclofen 10mg 3x/d,
Percocet, Fentanyl Patch, Cymbalta Baclofen 80 3x/d, Ditraphan 15
1x/d, Neurontin 1200/d, Oxyibutynin 5ml 3x/d Baclofen,
Clonazapam, Lexapro, Aleve, Klonopin,
Vicodin, Cymbalta, Flora Q Baclofen,
Vicodin Betaseron  Cellcept, Nortryptiline, Provigil, Baclofen
Clonidine patch (4 heat)  Cymbalta 60mg, Neurontin 300/300/800mg,
Flexeril, Darvocet (or- Lortab) & Lyrica @bedtime.

[plus Tizanadine, Valium (diazepam), Flexeril (cyclobenzaprine), mirapex, 
Methocarbomal (robaxin) & Reglan
(metoclopramide)] Cymbalta 60mg, Nexium, Cipro 2x/w Cymbalta 60mg/d,
Lyrica 400mg 2x/d, Fentanyl, Vicodin
Cymbalta,Miripex,Klonipin,Zanaflex,Amanatidine,Probiotics Daypro
Effexor Effexor, Lortab or Advil Elavil 50mg/at nite Elavil 50mg/at
nite Fentynal patches 75 mcg, Gabapentin  Gabapentin 300mg 2x/d
Gabapentin 400mg 3x/d, Tramadol, Sevella(depression) Gabapentin 600mg
4x/d, Imuran, Mexiletine [banding] Gabapentin 900mg 3x/d, Oxycontin
40mg 3x/d Hydrocodone APAP 10/625 3x/d, Fentanyl 100mcg patch, 5mg
Valium 4x/d, Flexeril 10mg 3x/d, Lyrica 200mg 3x/d, Tegretol 200mg
6x/d, Ativan 2mg/d Hydrocortisone, Lyrica, Zoloft Imuran, Gabapentin
300mg 3x/d, Zoloft, Ritalin sr Loripan, Percocet Lyrica 150 mg 2x/day,
Nortripline 25 mg/(night) Lyrica 50mg 2x/day, Flexaril, Hydrocodone
Lyrica 600mg/d, Lyrica 75mg 2x/d, Amantadine 100mg [a.m.&p.m.]
Lyrica 75mg 2x/d; Baclofen Lyrica 75mg 3x/d Lyrica 75mg 4x/d Lyrica,
Baclofen, Oxycodone Lyrica, Prednazone,
Celebrex Mestinon, 30 mg 2x/d Morphine, 600mg Gabepentin, Bacoflen
20mg 8x/d  MS Contin (Morphine Sulphate), Ativan MS Contin,
Lyrica Neur. 300
3x/d,Cymbalta,Tramadol,Flexeril,Rebif Neur., Bacoflen,
Advil, Lyrica, Celebrex, Med Kempro
Neurontin Neurontin Neurontin 300 4x/d, Provigil (Modafinil) 200mg/d
Neurontin 300 5x/d, Copaxone Neurontin 400mg 4x/d, Lortab, Zanaflex,
Paxil, Elevil, Prilosec, Dyazide, Evista & Zyrtec Neurontin 600mg
4x/d, Norco 7.5-325 4x/d Neurontin 800 3x/d, Imuran (azathioprine)
50mg/d Neurontin 900 3x/d, Naltrexone, Detrol LA Neurontin 900
4x/d Neurontin, Bachlofen, Ambien,
Sonata, Klonopin 0.5 mg Neurontin, Baclofen, Hydrocodone
Neurontin, Cymbalta, Topamax, Baclofen 20 4x/d, Lasix, Zanaflex 4
4x/d, Detrol LA 4 1x/d, Synthroid,
Copaxone, Trazadone, Meclizine (vertigo),
Xanax,
Mupirocin, Nexium,
Restoril (sleep), Seroquel, Darvocet, Fluocinonide Cream, Doxycycline
Hyclate (antibiotic); DHEA, Ampyra Neurontin, Ibuprofen Neurontin,
Tandrilax, Doxylamine Succinate (insomnia) Norco --> Lyrica 600mg/d
Nortriptyline, Phenobarbital, Marijuana spray, Dextromethorphan
Nortriptyline, Tizanidine Olive Leaf Extract, Resveratrol & NADH
Percodan, Baclofen, MagnesiumCitrate Prednazone Prednisone 60mg,
Lyrica 75mg/d Tegretol 200mg 2x/d Tegretol, Klonopin Tramadol HCL
50mg/4-8hrs, Tylenol Xstrength, Cymbalta, Tizanidine 4mg/3 xd,
Zanaflex, Voltaren Gel  Tramadol,Lexapro,Cymbalta,Xanax,Norco,
Detrol LA,Flomax, Lyrica,Soma,Miralax Zanaflex 2x/d Zanaflex,
Baclofen
 
 


-- 
 
 



  

Re: Fwd: [TMIC] pain management ideas

[Akua]

Brilliant Betty

this is great!




10mg Baclofen (up to 3x/d),Lyrica,Xanax Embeda, Percocet, Tegretol 
Amantadine 100mg 2X/d, Cymbalta 60mg, Zanaflex 4mg,Tranxene 7.5mg, 
Darvacet Amatryptaline,Gabapentin,Synthroid,Loratadine,Miralax 
Amitriptyline (Elavil) 50mg, Tramadol, Lyrica, Wellbutrin Apitherapy 
Avonex, Betaseron, Copaxone, Lyrica 150mg/d, Cymbalta 60mg/d; Ambien 
a/n Baclofen Baclofen Baclofen Baclofen Baclofen Baclofen Baclofen 
10mg 3x/d, Percocet, Fentanyl Patch, Cymbalta Baclofen 80 3x/d, 
Ditraphan 15 1x/d, Neurontin 1200/d, Oxyibutynin 5ml 3x/d Baclofen, 
Clonazapam, Lexapro, Aleve, Klonopin, Vicodin, Cymbalta, Flora Q 
Baclofen, Vicodin Betaseron  Cellcept, Nortryptiline, Provigil, 
Baclofen Clonidine patch (4 heat)  Cymbalta 60mg, Neurontin 
300/300/800mg, Flexeril, Darvocet (or- Lortab) & Lyrica @bedtime.
[plus Tizanadine, Valium (diazepam), Flexeril (cyclobenzaprine), 
mirapex, Methocarbomal (robaxin) & Reglan (metoclopramide)] Cymbalta 
60mg, Nexium, Cipro 2x/w Cymbalta 60mg/d, Lyrica 400mg 2x/d, 
Fentanyl, Vicodin 
Cymbalta,Miripex,Klonipin,Zanaflex,Amanatidine,Probiotics Daypro 
Effexor Effexor, Lortab or Advil Elavil 50mg/at nite Elavil 50mg/at 
nite Fentynal patches 75 mcg, Gabapentin  Gabapentin 300mg 2x/d 
Gabapentin 400mg 3x/d, Tramadol, Sevella(depression) Gabapentin 
600mg 4x/d, Imuran, Mexiletine [banding] Gabapentin 900mg 3x/d, 
Oxycontin 40mg 3x/d Hydrocodone APAP 10/625 3x/d, Fentanyl 100mcg 
patch, 5mg Valium 4x/d, Flexeril 10mg 3x/d, Lyrica 200mg 3x/d, 
Tegretol 200mg 6x/d, Ativan 2mg/d Hydrocortisone, Lyrica, Zoloft 
Imuran, Gabapentin 300mg 3x/d, Zoloft, Ritalin sr Loripan, Percocet 
Lyrica 150 mg 2x/day, Nortripline 25 mg/(night) Lyrica 50mg 2x/day, 
Flexaril, Hydrocodone Lyrica 600mg/d, Lyrica 75mg 2x/d, Amantadine 
100mg [a.m.&p.m.] Lyrica 75mg 2x/d; Baclofen Lyrica 75mg 3x/d Lyrica 
75mg 4x/d Lyrica, Baclofen, Oxycodone Lyrica, Prednazone, Celebrex 
Mestinon, 30 mg 2x/d Morphine, 600mg Gabepentin, Bacoflen 20mg 8x/d 
MS Contin (Morphine Sulphate), Ativan MS Contin, Lyrica Neur. 300 
3x/d,Cymbalta,Tramadol,Flexeril,Rebif Neur., Bacoflen, Advil, 
Lyrica, Celebrex, Med Kempro Neurontin Neurontin Neurontin 300 4x/d, 
Provigil (Modafinil) 200mg/d Neurontin 300 5x/d, Copaxone Neurontin 
400mg 4x/d, Lortab, Zanaflex, Paxil, Elevil, Prilosec, Dyazide, 
Evista & Zyrtec Neurontin 600mg 4x/d, Norco 7.5-325 4x/d Neurontin 
800 3x/d, Imuran (azathioprine) 50mg/d Neurontin 900 3x/d, 
Naltrexone, Detrol LA Neurontin 900 4x/d Neurontin, Bachlofen, 
Ambien, Sonata, Klonopin 0.5 mg Neurontin, Baclofen, Hydrocodone 
Neurontin, Cymbalta, Topamax, Baclofen 20 4x/d, Lasix, Zanaflex 4 
4x/d, Detrol LA 4 1x/d, Synthroid, Copaxone, Trazadone, Meclizine 
(vertigo), Xanax,
Mupirocin, Nexium, Restoril (sleep), Seroquel, Darvocet, 
Fluocinonide Cream, Doxycycline Hyclate (antibiotic); DHEA, Ampyra 
Neurontin, Ibuprofen Neurontin, Tandrilax, Doxylamine Succinate 
(insomnia) Norco --> Lyrica 600mg/d Nortriptyline, Phenobarbital, 
Marijuana spray, Dextromethorphan Nortriptyline, Tizanidine Olive 
Leaf Extract, Resveratrol & NADH Percodan, Baclofen, 
MagnesiumCitrate Prednazone Prednisone 60mg, Lyrica 75mg/d Tegretol 
200mg 2x/d Tegretol, Klonopin Tramadol HCL 50mg/4-8hrs, Tylenol 
Xstrength, Cymbalta, Tizanidine 4mg/3 xd, Zanaflex, Voltaren Gel 
Tramadol,Lexapro,Cymbalta,Xanax,Norco, Detrol LA,Flomax, 
Lyrica,Soma,Miralax Zanaflex 2x/d Zanaflex, Baclofen





--

Fwd: Re: [TMIC] pain management ideas

[Akua]

from john snodgrass




Dennis,
How long have you been struggling with TM?

what combinations of meds have you tried?

I have been fighting it for 2.5 years, but hydrocodone and 
Neuronton,Baclofin,and lorazepam seam to be helping me somewhat.
doesn't make everything peachy but allows me to function.look at the 
archives in this group,there's a lot of options that you might take 
to your dr if you want to see if something other than what you have 
been doing might make a difference.




--

Re: [TMIC] pain management ideas

[Akua]

hi all. i wanted to ask what pain and nerve med's you all have taken 
that works. i am always in pain. i am out of options with med's i 
have taken. can anyone help?


dennis/tx


What have you taken that doesn't work? ( would save time in answering)
--

Re: [TMIC] pain management ideas

[john snodgrass]

hypnosis sounds pretty cool as long as it doesn't take me back to the time i 
was a paperboy being chased by the crazy dog!

--- On Sun, 8/15/10, fr...@franksheldon.com  wrote:

From: fr...@franksheldon.com 
Subject: Re:  [TMIC] pain management ideas
To: "john snodgrass" , "Dennis Rabalais" 

Cc: "transverse myelitis" 
Date: Sunday, August 15, 2010, 9:45 AM

 
Hi All,
I'm not going to go over my pain meds ( Nortriptyline, Vitamin D, 
Dextromethorphan, Cannabinoids, Phenobarbital) again.
My pain never really goes away unless I add a couple shots of Bourbon or other 
high test drinks.  I am able to keep my pain at #2 or 3 with meds.
What really helps is meditation (self hypnosis).  I usually listen to quiet 
classical music, close my eyes and take myself away to some secluded beach in 
the Exuma chain of islands. My pain will get as low as #1. I am told that there 
are CD's in which guided imagery is used to take you into self hypnosis.
I hope this helps.
F


  

Re: [TMIC] pain management ideas

[frank]

Hi All,


I'm not going to go over my pain meds ( Nortriptyline, Vitamin D, 
Dextromethorphan, Cannabinoids, Phenobarbital) again.


My pain never really goes away unless I add a couple shots of Bourbon or other 
high test drinks. I am able to keep my pain at #2 or 3 with meds.


What really helps is meditation (self hypnosis). I usually listen to quiet 
classical music, close my eyes and take myself away to some secluded beach in 
the Exuma chain of islands. My pain will get as low as #1. I am told that there 
are CD's in which guided imagery is used to take you into self hypnosis.


I hope this helps.


F

Re: [TMIC] pain management ideas

[Janice Nichols]

Dennis,
I don't think any of us are able to take enough meds to completely take the 
pain away, but many of us feel it is at least controlled. I use neurontin 
and
baclofen.   It takes a while to figure out how many of each to take and at what 
time of the day/nite to take them.I am fortunate that when the pain gets
bad, I can quit whatever I am doing and just sit down for a while.Believe 
it or not, sometimes that really helps, along with a pain pill -  I take 
vicotin.But,
I keep the vicotin to a minimum.   If your doctor isn't much 
help, your pharmacist may be the one to go to.Then, you can go back to your 
doc with
whatever the pharmacist may suggest.   They know their newest drugs better than 
the docs anyway.
I wish you luck and keep us posted on your progress/frustrations.
Janice



From: Dennis Rabalais 
Sent: Saturday, August 14, 2010 6:52 PM
To: tmic 
Subject: [TMIC] pain management ideas


hi all. i wanted to ask what pain and nerve med's you all have taken  that 
works. i am always in pain. i am out of options with med's i have taken. can 
anyone help?

dennis/tx

Re: [TMIC] pain management ideas

[john snodgrass]

i believe it is a mixture of things that is unique to each individual.

baclofin,neurontin,hydrocodone,and lorazepam helps me to function.

the pain is always there but it is worse than i can bear without the meds.

and i do not believe that i have the meds just right yet.

still many spasms and much grief.

read all you can in the past posts.

there have been some good reports that may help us,,but just like winning the 
lottery,,,ya gotta buy a ticket,,,so with the advice,,,ya gotta get a Dr to 
agree to try and help and play the game. 

main thing is to never never give up and think there's nothing out there 
because theres a scad of stuff to try even if its an old Indian cure.


and always vent your frustrations in here because we all have suffered similar 
things as you are suffering.

and even sometimes without swearing and pounding the bed  ;)

be sure to let us all know if you find something that makes a difference for 
you because that's encouraging.

--- On Sat, 8/14/10, Dennis Rabalais  wrote:

From: Dennis Rabalais 
Subject: [TMIC] pain management ideas
To: "tmic" 
Date: Saturday, August 14, 2010, 7:52 PM



 
 

hi all. i wanted to ask what pain and nerve med's 
you all have taken  that works. i am always in pain. i am out of options 
with med's i have taken. can anyone help?
 
dennis/tx


  

[TMIC] pain management ideas

[Dennis Rabalais]

hi all. i wanted to ask what pain and nerve med's you all have taken  that 
works. i am always in pain. i am out of options with med's i have taken. can 
anyone help?

dennis/tx

[TMIC] Pain and Feeling

[Akua]

"It has progressed as the feeling increased over the past 9 years."
h...
I'm wondering if increased pain is a sign of increased connectivity?

--

Re: [TMIC] Pain

[L T CHERPESKI]

Hi Janice and a big warm welcome to the group. My name is Linda and I have had 
TM for 7 years now.  My lesions are at C4, 5 & 6 - cervical area.  Mine started 
with numbness and tingling in my toes and just worked its way up to my chest.  
I had no feeling, but I could still walk - sort of.  Once the numbness went 
away this wonderful nerve pain started.  Mine is in my legs and back also, but 
I do not use a spinal cord stimulator.  I know some people do.  

I think Trudy may have answered this already but most people take Lyrica or 
Neurontin for the nerve pain and Cymbalta can help as well.  Are you on any 
medication??  Your doctor might want to start you on something for that awful 
arthritis pain.  Do you experience the extreme fatigue that most of us deal 
with?  Gee, I have more questions than you!  Sorry - just trying to get to know 
you better.  Are you having any trouble sleeping through the night?  My neuro 
just recently put me on Zanaflex to help with sleep as well as pain.  It does 
seem to be helping some. (as I sit at my computer burning!!) Time to go to bed 
I guess. This is one of those days where I have done more than my body wanted 
me to do and now the burning is not being kind.  

I'm so glad you've joined our group, and I'm sorry that I asked more questions 
than gave answers.  This is still so new for you.  There will be many questions 
that come up, this is very normal.  Please ask them.  There is always somebody 
here to help. 

Linda in Eagle, ID
(but born & raised in Seattle) 



 Message - 
  From: Janice<mailto:jan...@centurytel.net> 
  To: transverse myelitis<mailto:tmic-list@eskimo.com> 
  Sent: Tuesday, March 17, 2009 10:07 AM
  Subject: [TMIC] Pain


  I hate to keep bugging you all with questions, so I hope you don't mind and 
will take a minute to answer.

  Several of you have talked about the pain that you have, apparantly even 
after several years of TM.   I am assuming we are all talking about nerve pain 
- which I have in my legs and back and use a spinal cord stimulator for.Is 
this correct or is there something else out there causing this?  Also, 
would you please give me the name of the medicine you take for pain?

  I have another appointment with my neuro on April 1 and would like a little 
backup as to what else is out there that is working for others.   My stimulator 
is working pretty well, but the TM is really aggravating the arthrtis that I 
have in the lumbar region.

  That is the only question I have for now, but I am sure I will have more 
later - if you don't mind.

  Janice

Re: [TMIC] Pain

[Trudy Ogilvie]

Janice,I take 150mg. of Lyrica 2x a day. I also take 90mg. Cymbalta. I also
have been given vicodin if it really gets bad. I have a great deal of nerve
pain from the waist down. Fatigue is a huge problem. I'm sure the arthritis
doesn't help much! I have just begun a new exercise program to strengthen my
legs. I walk with a walker.  Take care!
Trudy


On Tue, Mar 17, 2009 at 12:07 PM, Janice  wrote:

>  I hate to keep bugging you all with questions, so I hope you don't mind
> and will take a minute to answer.
>
> Several of you have talked about the pain that you have, apparantly even
> after several years of TM.   I am assuming we are all talking about nerve
> pain - which I have in my legs and back and use a spinal cord stimulator
> for.Is this correct or is there something else out there causing
> this?  Also, would you please give me the name of the medicine you
> take for pain?
>
> I have another appointment with my neuro on April 1 and would like a little
> backup as to what else is out there that is working for others.   My
> stimulator is working pretty well, but the TM is really aggravating the
> arthrtis that I have in the lumbar region.
>
> That is the only question I have for now, but I am sure I will have more
> later - if you don't mind.
>
> Janice
>

[TMIC] Pain

[Janice]

I hate to keep bugging you all with questions, so I hope you don't mind and 
will take a minute to answer.

Several of you have talked about the pain that you have, apparantly even after 
several years of TM.   I am assuming we are all talking about nerve pain - 
which I have in my legs and back and use a spinal cord stimulator for.Is 
this correct or is there something else out there causing this?  Also, 
would you please give me the name of the medicine you take for pain?

I have another appointment with my neuro on April 1 and would like a little 
backup as to what else is out there that is working for others.   My stimulator 
is working pretty well, but the TM is really aggravating the arthrtis that I 
have in the lumbar region.

That is the only question I have for now, but I am sure I will have more later 
- if you don't mind.

Janice

Re: [TMIC] Pain & Drugs

[Trudy Ogilvie]

Akua
Do you have MS? I am on Lyrica and Cymbalta. So I've got to figure out how
to work it all out. I have a prescription for LDN and I have decided to try
it. Were you on any drugs before the LDN??  I applaud you. I am not very
good about my diet and I know it is essential towards improving my health. I
have gone back for more PT... The "Gunny" warned me that I'd better get back
to a daily regimen or else!  :)  He of course is right. It's Lent for us
Catholics and if I ever wanted to improve my health the next six weeks are
certainly an opportunity. The only time I can actually stick to my promises.
To improve my health and of most of all to my spirituality.
Thanks for writing
Trudy

On Fri, Feb 27, 2009 at 10:00 PM, Akua  wrote:

>  I've been taking low dose naltrexone since 2006 and my pain abated.
>  I  now only take LDN and aspirin ( for blood thinning as  I had a blood
> clot when I first got TM).
>
> Every so often I repeat this  message to sing the praises of LDN-- and
> perhaps spare someone else unnecessary meds.
>
> I also have a vitamin regimen, am a non meat eater, am lactose intolerant,
> and  my diet is  fresh food
> focused.
>
> Akua
>
> --
>
>

[TMIC] Pain & Drugs

[Akua]

I've been taking low dose naltrexone since 2006 and my pain abated.
 I  now only take LDN and aspirin ( for blood thinning as  I had a 
blood clot when I first got TM). 

Every so often I repeat this  message to sing the praises of LDN-- 
and perhaps spare someone else unnecessary meds.


I also have a vitamin regimen, am a non meat eater, am lactose 
intolerant, and  my diet is  fresh food

focused.

Akua
--

Re: [TMIC] Pain

[Trudy Ogilvie]

Dear Jude,After just reading your e-mail I surfed around on the net about
pressure sores and how serious and painful they can be. I found one site I
thought informative tho I have a feeling you know all this and are hoping
for some "new found" idea as to how to heal the pain.
As for the pain in your heart, I am so so sorry.  True family and friends
stay with you thru it all... I reminds me of the story in the Scriptures
about the sower and the seed... some fell on rocky ground and for awhile
they were caring and joyful but... eventually the world's "glitter" got in
the way ... but we here in the TM group we are like the "seed in the
good soil, these are the ones who have heard the word in an honest and good
heart, and hold it fast, and bear fruit with perseverance."Luke 8:15 (New
American Standard") We will always be here for you because you know that we
pray for you and all of our TM group, every day!!
May this year bring us peace, joy and perseverance!!!
Love ya
Trudy
http://familydoctor.org/online/famdocen/home/seniors/endoflife/039.html





On Mon, Dec 29, 2008 at 5:07 PM,  wrote:

> *Have many of you had pressure sores that have become infected and are
> extremely painful?*
> **
> *I know I only post when it's "rainy weather" but I really need some help.
> The problem is that there are two major sores, one on each butt cheek.*
> **
> *I can find no comfortable position. *
> **
> *And my family came through at Christmas time as usual...not one phone
> call, not one visitor, not one email.*
> **
> *They were angry because we didn't make it to the get together.  I told
> them I can only travel by ambulance because I am not allowed to sit at all.
> They thought it was a joke.*
> *It's not fair...*
> **
> *I love you guys.*
> *Jude*
> **
> **
> * *
>
>
>
>
> --
> One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo
> Mail. Try it 
> now
> .
>

Re: [TMIC] Pain

[Balmatmic]

Dear Jude,
 
I am so sorry that your family doesn't understand that you are  not in any 
condition to visit them.  Heck, this isn't anything new for you  or them, yet 
they choose to behave this way and make you miserable again and  again.  It's 
just not fair how they treat you and I am very sorry for  you.  They should 
have 
figured it out by now if they would have paid any  sort of attention to what 
has been going on with you.
 
So many of us have had friends and family treat us differently  after we've 
had TM.  I have lost a couple of what I thought were good  friends, and many 
have had family and/or friends turn on them as well.  It  hurts, yet we must 
continue on with our lives the best we can.
 
Just know that we all care about you on TMIC.  Just wish  that more of us 
lived closer together and could visit back and forth  more.
 
Hugs, Barbara
 
 

In a message dated 12/29/2008 2:07:40 P.M. Pacific Standard Time,  
heyjude48...@aol.com writes:

 
 
Have many of you had pressure sores that have  become infected and are 
extremely painful?
 
I know I only post when it's "rainy weather"  but I really need some help. 
The problem is that there are two major  sores, one on each butt cheek.
 
I can find no comfortable position.  

And my family came through at Christmas time  as usual...not one phone call, 
not one visitor, not one  email.
 
They were angry because we didn't make it to  the get together.  I told them 
I can only travel by ambulance  because I am not allowed to sit at all.  They 
thought it was a  joke.
It's not fair...
 
I love you guys.
Jude
 
 
 









 

 One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo  
Mail. _Try  it now_ 
(http://www.aol.com/?optin=new-dp&icid=aolcom40vanity&ncid=emlcntaolcom0025)
 .
**One site keeps you connected to all your email: AOL Mail, 
Gmail, and Yahoo Mail. Try it now. 
(http://www.aol.com/?optin=new-dp&icid=aolcom40vanity&ncid=emlcntaolcom0025)

RE: [TMIC] Pain

[Patricia Cooley]

Hi Jude:

 

I am so sorry you didn't have a Merry Christmas.  We may not have sent an
e-mail, but know that you are in our thoughts and prayers every day.  The
holiday season can either be a happy occasion or one that sends you in the
dumps.  I, too, was in the dumps quite often.  I am glad they are over.  I
do have a loving and caring family, but that isn't always enough.  Just
remember, you have no choice in picking your family, but you do in picking
your friends.  Please know that you have many, many friends here who
understand and care for you.

 

I hope we all have a better and Happy New Year.

 

Love, Patti in Wisconsin

From: heyjude48...@aol.com [mailto:heyjude48...@aol.com] 
Sent: Monday, December 29, 2008 4:07 PM
To: TMIC-LIST@eskimo.com
Subject: [TMIC] Pain

 


Have many of you had pressure sores that have become infected and are
extremely painful?

 

I know I only post when it's "rainy weather" but I really need some help.
The problem is that there are two major sores, one on each butt cheek.

 

I can find no comfortable position. 

 

And my family came through at Christmas time as usual...not one phone call,
not one visitor, not one email.

 

They were angry because we didn't make it to the get together.  I told them
I can only travel by ambulance because I am not allowed to sit at all.  They
thought it was a joke.

It's not fair...

 

I love you guys.

Jude

 

 

 





  _  

One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo
Mail. Try
<http://www.aol.com/?optin=new-dp&icid=aolcom40vanity&ncid=emlcntaolcom0
025>  it now.

[TMIC] Pain

[Heyjude48458]

 
 
Have many of you had pressure sores that have  become infected and are 
extremely painful?
 
I know I only post when it's "rainy weather" but  I really need some help. 
The problem is that there are two major sores,  one on each butt cheek.
 
I can find no comfortable position.  

And my family came through at Christmas time as  usual...not one phone call, 
not one visitor, not one  email.
 
They were angry because we didn't make it to the  get together.  I told them 
I can only travel by ambulance because I  am not allowed to sit at all.  They 
thought it was a  joke.
It's not fair...
 
I love you guys.
Jude
 
 
 




**One site keeps you connected to all your email: AOL Mail, 
Gmail, and Yahoo Mail. Try it now. 
(http://www.aol.com/?optin=new-dp&icid=aolcom40vanity&ncid=emlcntaolcom0025)

Re: [TMIC] Pain Med Ultram ER (Tramadol)

[Jenna]

Hi Candy, yes I was given this, and for me I just wanted more.   I was like an 
instant additive( I no that is not spelled right, but I think everyone knows 
what I am saying) 
So yes it does help with pain!!  but  be careful!
Jenna



- Original Message 
From: CANDIS KALLEY <[EMAIL PROTECTED]>
To: tmic-list 
Sent: Wednesday, August 27, 2008 3:07:57 PM
Subject: [TMIC] Pain Med Ultram ER (Tramadol)

I went to my neuro today with my complaints of hurrandous pain from the 
barometric pressure changes that occurred with Fay and now Guestov (sp?).
I'm not the 1st the nurse said.  My neuro, Dr Vickers, prescribed Ultram ER 100 
mg 1X a day plus a sample for 4 days.  Within 30 minutes the pain went from a 
8/9 + verily able to move to 5/6 to moving more easily which I can handle.
Has anyone ever been prescribed this?  I don't think that I've ever seen it 
posted before but now days my memory isn't what it use to be.


Life is short! Break the rules! Forgive quickly! Kiss slowly! 
Love truly, Laugh uncontrollably . 
And never regret anything that made you smile.


Prayers and thoughts for you and yours,

Candy K.


  

[TMIC] Pain Med Ultram ER (Tramadol)

[CANDIS KALLEY]

I went to my neuro today with my complaints of hurrandous pain from the 
barometric pressure changes that occurred with Fay and now Guestov (sp?).
I'm not the 1st the nurse said.  My neuro, Dr Vickers, prescribed Ultram ER 100 
mg 1X a day plus a sample for 4 days.  Within 30 minutes the pain went from a 
8/9 + verily able to move to 5/6 to moving more easily which I can handle.
Has anyone ever been prescribed this?  I don't think that I've ever seen it 
posted before but now days my memory isn't what it use to be.


Life is short! Break the rules! Forgive quickly! Kiss slowly! 
Love truly, Laugh uncontrollably . 
And never regret anything that made you smile.


Prayers and thoughts for you and yours,

Candy K.

[TMIC] Pain links

[Krissy Z]

http://healing.about.com/od/painmanagement/tp/attitudes_pain.htm?nl=1

http://healing.about.com/od/painmanagement/Pain_Management.htm?nl=1

~Krissy~
We are all  in this together, by ourselves.
- Lily Tomlin

~I'm In pretty Good Shape  
 For the Shape I am in~


  

RE: [TMIC] pain

[Janet Dunn]

I am sorry that your neurologist won't prescribe any opiate based drugs, but
I am glad to hear that they help you.  I have been living on them, and
thought that maybe I was crazy, as everything I have read indicates they do
not help TM, and should not be prescribed.  But they do help, and yes, I am
not the only one!  I find they "quiet" the crawlies and the aching better
than anything else. My GP has me on hydro morphine contin 2 times a day, and
percodan as needed, as well as the standard lyrica.  Perhaps you could try
your GP.  I have found that Robaxacet works well too. The one mixed with
asprin rather than Tylenol works the best. 

 

 

 

From: robert hennessy [mailto:[EMAIL PROTECTED] 
Sent: July 5, 2008 2:02 PM
To: tmic-list@eskimo.com
Subject: [TMIC]

 

i was diagnosed with tm 7 years ago this july 7, 2001. i have been suffering
from pain through out the past 7 years w/o relief. my nuerologist won't
prescribe me any opiate based drugs although they seem to work. i have
gotten them for other things. marijuana seems to help, although indiana
doesn't allow it to be prescribed legally. i have contemplated switching
doctors. any suggestions

  _  

Making the world a better place one message at a time. Check out the i'm
Talkathon.
 

Re: [TMIC] Pain

[Natalie Boyles]

Hi Natalie,
Why not try changing your family doctor.  Sounds like he is stereotyping and
treating you as if you were an anxious and neurotic female. The aspirin dose
at that level is what they prescribe to deter heart attacks. And the Zanax,
alone like that, is what they give patients when they do not know what to do
with them. It keeps you calm and quiet. Your doctor does not sound like he
is working very hard for his money. Don't let the doctors ignore you like
this. There are lots of meds that can help with symptoms and the family
doctor can prescribe them without need to see a specialist. Doctors are paid
employees and owe you better work than that.
Natalie B



On 9/28/07, natalie mizenko <[EMAIL PROTECTED]> wrote:
>
>   Trudy,
> I was sent by my dr. to a neurologist, he was thinking he might have
> different meds. for me.  The dr. was nice but stated "there to nothing else
> I can do for you that your dr. is not doing".  I thought "why did I come
> here for?"  wasted dr. trip againif I could count them in my life it
> would be a high total.  Don't mean to be  negative, but it's been like
> >>
> >> From: /Regina Rummel <[EMAIL PROTECTED]>/
> >> To: /tmic-list@eskimo.com/
> >> Subject: /[TMIC] Pain/
> >> Date: /Wed, 26 Sep 2007 12:03:12 -0700 (PDT)/
> >>
> >> Best idea is seeing a new neurologist. Zanax (for anxiety and
> >> nervousness) and 81mg aspirin? That's it! I'm no doctor, but
> >> sounds like you're not taking anything for pain.
> >> Good luck and let us know what the new neuro. has to say.
>
>
> --
>
>

Re: [TMIC] Pain

[natalie mizenko]

Trudy,
  I was sent by my dr. to a neurologist, he was thinking he might have 
different meds. for me.  The dr. was nice but stated "there to nothing else I 
can do for you that your dr. is not doing".  I thought "why did I come here 
for?"  wasted dr. trip againif I could count them in my life it would be a 
high total.  Don't mean to be  negative, but it's been like that in my life.  
Natalie M.
  
  

Trudy OGILVIE <[EMAIL PROTECTED]> wrote: Kevin,
So sorry your having meds problems! I think this will always be a huge problem 
for us. I switched from Neurontin (5 years) to Lyrica and also Cymbalta. So now 
I am on 2  75mg. of Lyrica twice a day. I also take 60mg. of Cymbalta. 
I also have percocet or Vicodin for when the pain gets severe. I only take it 
when I really need it. Maybe once or twice a week. I take 1 1/2 tablets. 
Depends on how severe the pain is as to whether I take percocet or Vicodin. I 
also take 1/2 tablet of Xanax when I cannot get to sleep.
I'm sure we all know the dangers of getting addicted. It is my primary care 
physician that has helped me out, my neuro really didn't care how much pain I 
was in... he just wouldn't or couldn't understand my pain...
Interesting side note:  The Cymbalta supresses the "high" I would get with the 
percocet. Thankfully tho it does supress the pain!!! 
I wish you luck...Let us know how it goes! 
  Trudy
  Worrying does not empty tomorrow of its troubles; It empties today of its 
strengths. 

  
  
  
  

-

From:  Kevin Wolfthal <[EMAIL PROTECTED]>
To:  Tmic-list@eskimo.com
Subject:  Re: [TMIC] Pain
Date:  Wed, 26 Sep 2007 22:56:54 -0400
>
>
>
>I tried Cymbalta and didn't tolerate it, same with Lyrica 
>unfortunately. Xanax keeps my
>heart rate normal and never made me sick. I take the smallest 
>possible dose and quantity per day
>usually one or two, though I am allowed more.
>
>All medications are potentially dangerous, even baby aspirin can
>make you bleed internally. I am very careful about how I take
>drugs so I don't misuse them.
>
>Kevin
>
>
>
>
>
>
>
>
>
>
>
>
>Larry Throne wrote:
>>
>>And most likely if you get the pain to a tolerable level you won't 
>>need the anxiety medication. That's some pretty dangerous stuff. 
>>Ask your doctor to put you on cymbalta. It's the best thing I've 
>>found besides neurontin.
>>
>>Larry in Oklahoma who's been down that road
>>
>>
>>
>>
>>Larry Throne, MSW
>>
>> 
>>
>> From: /Regina Rummel <[EMAIL PROTECTED]>/
>> To: /tmic-list@eskimo.com/
>> Subject: /[TMIC] Pain/
>> Date: /Wed, 26 Sep 2007 12:03:12 -0700 (PDT)/
>>
>> Best idea is seeing a new neurologist. Zanax (for anxiety and
>> nervousness) and 81mg aspirin? That's it! I'm no doctor, but
>> sounds like you're not taking anything for pain.
>> Good luck and let us know what the new neuro. has to say.
>> R
>>
>>
>>
>>It’s the Windows Live™ Hotmail® you love — on your phone! 
>><http://g.msn.com/8HMBENUS/2752??PS=47575>
>



   
-
Don't let your dream ride pass you by.Make it a reality with Yahoo! Autos. 

Re: [TMIC] Pain

[Trudy OGILVIE]

Kevin,So sorry your having meds problems! I think this will always be a huge problem for us. I switched from Neurontin (5 years) to Lyrica and also Cymbalta. So now I am on 2  75mg. of Lyrica twice a day. I also take 60mg. of Cymbalta. I also have percocet or Vicodin for when the pain gets severe. I only take it when I really need it. Maybe once or twice a week. I take 1 1/2 tablets. Depends on how severe the pain is as to whether I take percocet or Vicodin. I also take 1/2 tablet of Xanax when I cannot get to sleep.I'm sure we all know the dangers of getting addicted. It is my primary care physician that has helped me out, my neuro really didn't care how much pain I was in... he just wouldn't or couldn't understand my pain...Interesting side note:  The Cymbalta supresses the "high" I would get with the percocet. Thankfully tho it does supress the pain!!! I wish you luck...Let us know how it goes! 
Trudy
Worrying does not empty tomorrow of its troubles; It empties today of its strengths. 







From:  Kevin Wolfthal <[EMAIL PROTECTED]>To:  Tmic-list@eskimo.comSubject:  Re: [TMIC] PainDate:  Wed, 26 Sep 2007 22:56:54 -0400>>>>I tried Cymbalta and didn't tolerate it, same with Lyrica >unfortunately. Xanax keeps my>heart rate normal and never made me sick. I take the smallest >possible dose and quantity per day>usually one or two, though I am allowed more.>>All medications are potentially dangerous, even baby aspirin can>make you bleed internally. I am very careful about how I take>drugs so I don't misuse them.>>Kevin>>>>>>>>>>>>>Larry Throne wrote:>>>>And most likely if you 
get the pain to a tolerable level you won't >>need the anxiety medication. That's some pretty dangerous stuff. >>Ask your doctor to put you on cymbalta. It's the best thing I've >>found besides neurontin.>>>>Larry in Oklahoma who's been down that road>>>>>>>>>>Larry Throne, MSW>>>> >>>> From: /Regina Rummel <[EMAIL PROTECTED]>/>> To: /tmic-list@eskimo.com/>> Subject: /[TMIC] Pain/>> Date: /Wed, 26 Sep 2007 12:03:12 -0700 (PDT)/>>>> Best idea is seeing a new neurologist. Zanax 
(for anxiety and>> nervousness) and 81mg aspirin? That's it! I'm no doctor, but>> sounds like you're not taking anything for pain.>> Good luck and let us know what the new neuro. has to say.>> R>>>>>>>>It’s the Windows Live™ Hotmail® you love — on your phone! >>>

Re: [TMIC] Pain

[Natalie Boyles]

Hi Kevin,
Please be careful if you are sensitive to cymbalta. I became extremely ill
when taking it. I too got sick in my stomach from it and felt very ill. Had
it been any worse, I would have needed to go to the emergency room. Luckily
I was able to wait for its effects to wear off.

I do not know if you have tried neurontin, but that is one drug I can
tolerate at what is probably lower doses than most on this list take, ie
300mg 1 or 2x day or sometimes only 100mg 2x day. I have never tried Lyrica
since it is very expensive and neurontin works about the same according to
the literature. Most meds do not agree with me.
Natalie B

On 9/27/07, Kevin Wolfthal <[EMAIL PROTECTED]> wrote:
>
>
>
> Hi Jeanne,
>
> Lyrica made me feel sick.  Nauseous and like I was going to pass out.  I
> tried it
> as long as I could, hoping the side effects would pass, but I couldn't
> take it.
>
> Cymbalta gave me stomach problems, but I might try it one more time.
> I'm going
> to ask my doctor about it.
>
> Best wishes,
> Kevin
>
>
>
>
>
>
>
> jrushton wrote:
> > Hi, Kevin!  I'm interested in what problems you had with Lyrica which
> > is what I am on.
> >
> > Jeanne
> >
>
>

Re: [TMIC] Pain

[Kevin Wolfthal]

Hi Jeanne,

Lyrica made me feel sick.  Nauseous and like I was going to pass out.  I 
tried it
as long as I could, hoping the side effects would pass, but I couldn't 
take it.


Cymbalta gave me stomach problems, but I might try it one more time.  
I'm going

to ask my doctor about it.

Best wishes,
Kevin







jrushton wrote:
Hi, Kevin!  I'm interested in what problems you had with Lyrica which 
is what I am on.


Jeanne

Re: [TMIC] Pain

[Kevin Wolfthal]

I tried Cymbalta and didn't tolerate it, same with Lyrica unfortunately. 
Xanax keeps my
heart rate normal and never made me sick. I take the smallest possible 
dose and quantity per day

usually one or two, though I am allowed more.

All medications are potentially dangerous, even baby aspirin can
make you bleed internally. I am very careful about how I take
drugs so I don't misuse them.

Kevin












Larry Throne wrote:


And most likely if you get the pain to a tolerable level you won't 
need the anxiety medication. That's some pretty dangerous stuff. Ask 
your doctor to put you on cymbalta. It's the best thing I've found 
besides neurontin.


Larry in Oklahoma who's been down that road




Larry Throne, MSW


From: /Regina Rummel <[EMAIL PROTECTED]>/
To: /tmic-list@eskimo.com/
Subject: /[TMIC] Pain/
Date: /Wed, 26 Sep 2007 12:03:12 -0700 (PDT)/

Best idea is seeing a new neurologist. Zanax (for anxiety and
nervousness) and 81mg aspirin? That's it! I'm no doctor, but
sounds like you're not taking anything for pain.
Good luck and let us know what the new neuro. has to say.
R



It’s the Windows Live™ Hotmail® you love — on your phone! 
<http://g.msn.com/8HMBENUS/2752??PS=47575> 

RE: [TMIC] Pain

[Larry Throne]

And most likely if you get the pain to a tolerable level you won't need the anxiety medication.  That's some pretty dangerous stuff.  Ask your doctor to put you on cymbalta.  It's the best thing I've found besides neurontin. 
Larry in Oklahoma who's been down that road 

Larry Throne, MSW


From: Regina Rummel <[EMAIL PROTECTED]>To: tmic-list@eskimo.comSubject: [TMIC] PainDate: Wed, 26 Sep 2007 12:03:12 -0700 (PDT)
Best idea is seeing a new neurologist.  Zanax (for anxiety and nervousness) and 81mg aspirin?  That's it!  I'm no doctor, but sounds like you're not taking anything for pain.  
Good luck and let us know what the new neuro. has to say.
R It’s the Windows Live™ Hotmail® you love — on your phone! 

[TMIC] Pain

[Regina Rummel]

Best idea is seeing a new neurologist.  Zanax (for anxiety and nervousness) and 
81mg aspirin?  That's it!  I'm no doctor, but sounds like you're not taking 
anything for pain.  
  Good luck and let us know what the new neuro. has to say.
  R

[TMIC] Pain

[Regina Rummel]

Kevin,
  Why can't you get a doctor to give you anything for pain?
  R

Re: [TMIC] Pain or no Pain

[Akua]

My personal (very unprofessional) theory is that it's sort of like 
stopping a small baby from crying and making noises - expecting him 
to either talk or keep quiet.  His crying is part of the development 
of his lungs and the noises are prerequisite to his learning to 
talk.  If you stop him from making noise until he can actually talk, 
he may never learn.  It seems as if when I stop my nerves from 
firing (so much) so that I won't have any pain, they don't work 
enough to allow me to walk (or walk more normally, feel, etc.).



More good words, to me and affirmation. T'was my theory, too. I had a 
lot of pain last year, sleep-stopping pain, movement-stopping pain, 
and I believed that I should soldier through it, because I wanted 
nothing to be in the way of return, recovery, healing.


I still can't walk and I still expect to. The pain comes and goes 
and is not as sharp nor as insistent and
there is more I can do now than I could a year ago, so  I hope to be 
another anomalous against the odds recovery.



Akua
--
http://www.healrecover.blogspot.com
http://www.akualezli.blogspot.com

Re: [TMIC] Pain or no Pain

[[EMAIL PROTECTED]]

I didn't have any pain at first, unless you count a little discomfort just 
below my rght rib.  (TM at C6-C8,)  But as time goes by, I get more pain, 
sometimes pretty bad.  I realize now that I was numb at first, so I didn't FEEL 
any pain.  As I get more feeling, I get more pain.  But on the other hand, as 
my shiatsu therapist keeps reminding me, 'Pain is good'.  It means the nerves 
aren't dead - they're trying to 'come back'.
Interesting thing to me is that when the pain is worse and I take any kind of 
meds or supplements for it (meds that work on the nervous system like 
alprazolam, butalbital, GABA amino acid - specifically ones that work on the 
GABA receptors - I get more numbness and therefore can't walk as well.  In 
other words, taking the meds seems to reverse my healing, depending on how much 
I take.  
This seems to make sense, since GABA is an inhibitory part of the nervous 
system.  So basically, what I take limits the firing of the nerves so I don't 
feel pain.  But it also seems as though it is limiting the nerves from 
returning to normal.  My personal (very unprofessional) theory is that it's 
sort of like stopping a small baby from crying and making noises - expecting 
him to either talk or keep quiet.  His crying is part of the development of his 
lungs and the noises are prerequisite to his learning to talk.  If you stop him 
from making noise until he can actually talk, he may never learn.  It seems as 
if when I stop my nerves from firing (so much) so that I won't have any pain, 
they don't work enough to allow me to walk (or walk more normally, feel, etc.).
'Just my theory for myself.  And I'm sure if I had a more serious case of TM 
and more pain, I wouldn't have as much of an option, though.  I'm also not very 
pain sensitive - and even then I sometimes need to take something for the pain! 
 So my theory might not make sense for a lot of people!
Sally
 

RE: [TMIC] Pain Relief

[Sandra Brassil]

Amitriptyline is actually an anti-depressant usually in the oral form.
So, I can understand how that works.  Anti-depressants have been widely
used in nerve pain control.   However, when I tried it, it made my hair
fall out!   Uch!

 

Sandy Brassil

Accounting Assistant

Alveolus, Inc.

"Inspiring the Breath of Life"

 

9013-A Perimeter Woods Drive

Charlotte, NC  28216

Phone:  (704) 926-4854

Fax:  (704) 926-4895

[EMAIL PROTECTED] <mailto:[EMAIL PROTECTED]> 

http://www.alveolus.com <http://www.alveolus.com> 

 

This email may contain confidential or privileged information.  If you
are not the intended recipient, please advise me (by return email) that
you received this email by mistake.  Afterward, I respectfully request
that you erase this email without reading it or sending it to anyone
else.  Thank you. 

 



From: Janet Dunn [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, June 12, 2007 4:41 PM
To: 'Transverse Myellitis'
Subject: [TMIC] Pain Relief

 

Hello to All

 

Like most of you I have the burning, pins and needles, electric shock,
tingling feeling in my feet and legs.  I am on Gabapentin and Perocodan.
I just want to mention a lovely lovely cream that my Dr. has given me by
prescription.  I have it made at a compounding pharmacy - and let me
tell you - it really helps quiet those nerves.

 

The prescription label reads:

 

Ketamine 4%Amitriptyline 2% in 100g of cream.

 

Apply to painful areas once daily.

 

This cream really works, the recipe came from a pain clinic in Vancouver
BC.

 

Worth a try, but in BC it is $67 for the 100g.  But relief is worth it.

 

Janet

[TMIC] Pain Relief

[Janet Dunn]

Hello to All

 

Like most of you I have the burning, pins and needles, electric shock,
tingling feeling in my feet and legs.  I am on Gabapentin and Perocodan.  I
just want to mention a lovely lovely cream that my Dr. has given me by
prescription.  I have it made at a compounding pharmacy - and let me tell
you - it really helps quiet those nerves.

 

The prescription label reads:

 

Ketamine 4%Amitriptyline 2% in 100g of cream.

 

Apply to painful areas once daily.

 

This cream really works, the recipe came from a pain clinic in Vancouver BC.

 

Worth a try, but in BC it is $67 for the 100g.  But relief is worth it.

 

Janet

Re: [TMIC] pain or no pain

[Akua]

 think of it something like electrical wires. If something happens 
between the source of power and the outlet I am trying to use, there 
may be no power -- or, if the damage is not complete, the power may 
be "dimmer" or faulty somehow. It may even cause sparks to sputter 
forth.


Excellent analogy! I think the dull pressing pain, the thrumming in 
the feet and at the back of my immobile legs  are those sputtering 
sparks where the wires are frayed

Akua


--
http://www.healrecover.blogspot.com
http://www.akualezli.blogspot.com

Re: [TMIC] pain or no pain

[Akua]

I believe that we have, somewhere inside our brains and bodies, the 
ability to overcome things like TM.  We ought to be growing new 
lines of communication between the brain and our bodies.




So do I. I envision the regrowth. I think the pain  are nerves 
regrowing. I am taking naltrexone and can move a bit more a year 
later than I could a year agao, so I live in hope.

Akua

--
http://www.healrecover.blogspot.com
http://www.akualezli.blogspot.com

Re: [TMIC] pain or no pain

[JHarper33]

 
Jude, it has helped me to think of it something like  electrical wires. If 
something happens between the source of power and the  outlet I am trying to 
use, there may be no power -- or, if the damage is not  complete, the power may 
be "dimmer" or faulty somehow. It may even cause sparks  to sputter forth. Once 
we had a lamp that would sometimes go off of its own  accord and we thought 
there was a problem with the wiring of the lamp. But then  we were testing out 
Christmas tree lights on another outlet in the same room  when sparks shot 
forth from that outlet. My husband had to take that all apart  and fix it -- 
and 
when he did, the lamp on the other side of the room started  working right. 
The problem with the lamp had not been the lamp but rather  something in the 
wiring of the other outlet affected the rest of the wiring. To  me that was a 
vivid illustration of how TM can affect one area yet have results  in another.
 
I don't know about surgery to remove good nerves to replace  bad ones like 
they do with blood vessels. Nerves are a lot "fussier" than blood  vessels.
 
Barbara H.
_http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) 
 
In a message dated 6/12/2007 3:02:12 AM Eastern Daylight Time,  
[EMAIL PROTECTED] writes:

Thanks  Bernie,
 
That really  cleared things up for me.  My brother lost a leg to cancer 
radiation  treatment and he had a terrible time treating the "phantom"  pain.
 
I wonder why  there would be such pain at the site of the incision if we 
cannot feel  anything?  We don't feel pain on the outside of the epidermis, but 
inside  the body is another story.  It is a seemingly unnatural thing to happen 
 
to the body.  I mean, they can poke us with needles all day and we never  
feel a thing, but if we were poked hard enough to cause an injury, we would  
somehow internalize the pain and have some kind of reaction, somewhere inside  
our 
bodies.
 
I don't know  if I am getting my point across...but the whole thing about 
paralysis is  pretty amazing.  I believe that we have, somewhere inside our 
brains and  bodies, the ability to overcome things like TM.  We ought to be 
growing 
 new lines of communication between the brain and our bodies.  

Day after  day, I try to raise my legs or bend my knees, or turn from side to 
side but to  no avail.  Sometimes I wonder why surgeons cannot take viable 
nerves that  are working and bypass the ones that don't.  They are able to do 
it 
with  arteries right in our hearts...that's pretty bold.  Why not try it with 
 the spinal cord too...they can't hurt us any more than we are already.   
Well, yes they could, but I think I would take my  chances.
 
Does anyone  know anything about the nerve damage that occurs with TM?  Are 
the nerves  damaged only at the site on the spinal cord, or are they damaged 
all the way  down the area that we are paralyzed?
 
Hey, don't  blame me...it's 3:00 in the morning here in lovely springtime 
Michigan.   We have so many things in bloom now that it's just  beautiful.
 
Love You  All,
Jude
"Our present troubles are quite small and won't  last very long. Yet they 
produce for us an immeasurably great Glory that will  last forever"

2 Corinthians 4:17
NLT










** See what's free at http://www.aol.com.

Re: [TMIC] pain or no pain

[Heyjude48458]

Thanks  Bernie,
 
That really  cleared things up for me.  My brother lost a leg to cancer 
radiation  treatment and he had a terrible time treating the "phantom"  pain.
 
I wonder why  there would be such pain at the site of the incision if we 
cannot feel  anything?  We don't feel pain on the outside of the epidermis, but 
inside  the body is another story.  It is a seemingly unnatural thing to happen 
to  the body.  I mean, they can poke us with needles all day and we never feel 
 a thing, but if we were poked hard enough to cause an injury, we would 
somehow  internalize the pain and have some kind of reaction, somewhere inside 
our  
bodies.
 
I don't know  if I am getting my point across...but the whole thing about 
paralysis is pretty  amazing.  I believe that we have, somewhere inside our 
brains and bodies,  the ability to overcome things like TM.  We ought to be 
growing 
new lines  of communication between the brain and our bodies. 
 
Day after day,  I try to raise my legs or bend my knees, or turn from side to 
side but to no  avail.  Sometimes I wonder why surgeons cannot take viable 
nerves that are  working and bypass the ones that don't.  They are able to do 
it 
with  arteries right in our hearts...that's pretty bold.  Why not try it with 
the  spinal cord too...they can't hurt us any more than we are already.  
Well,  yes they could, but I think I would take my chances.
 
Does anyone  know anything about the nerve damage that occurs with TM?  Are 
the nerves  damaged only at the site on the spinal cord, or are they damaged 
all the way  down the area that we are paralyzed?
 
Hey, don't  blame me...it's 3:00 in the morning here in lovely springtime 
Michigan.  We  have so many things in bloom now that it's just beautiful.
 
Love You  All,
Jude
"Our present troubles are quite small and won't last very long. Yet  they 
produce for us an immeasurably great Glory that will last forever"

2 Corinthians 4:17
NLT





** See what's free at http://www.aol.com.

[TMIC] pain or no pain

[Bernard Pelow]

Hey Jude et All,
  I believe what you are asking about is a "radical sympathectomy" of 
the damaged spinal cord. I asked my pain management doctor about this 
years ago, to do one on me. But he said that in most experiences of 
people having this done, the pain at the site of the incison was much 
more so than the original nerve pain. So it is not an option for them 
any more but in some research I did, I found that it had a 50 - 50 
chance of working. Some got relief, some did not. But he refuses to let 
me have it done also that there is the hope that some day they will 
find a way to heal the cord but I don't think that it will help us 
who have had damaged cords for so long. He also said that some of the 
pain could be "Deafferentation Pain". This pain occurs after loss of 
normal sensory input to the brain. An example of this is "phantom pain" 
is  where a patient may still feel pain from a foot even though their 
foot has been amputated. This pain may be difficult to treat. Treatment 
can consist of medical therapy, behavioral techniques, or electrical 
stimulation. If it were this kind of pain, doing the surgery would be 
completely useless.
  So we trudge on day to day, hour to hour, sometimes minute to 
minute...

Blessings and Peace,
Bernie
begin:vcard
fn:" If you help only one soul to find itself, if you comfort only one mourner, if you heal only one sick person, then the whole of your earthly life is justified. How privileged you are to be aware of the tremendous power that is around and about you, that enfolds you, guards you, directs you and ensures that you will continue to unfold your latent divinity and the gifts which are your cherished possession."
n:;" If you help only one soul to find itself, if you comfort only one mourner, if you heal only one sick person, then the whole of your earthly life is justified. How privileged you are to be aware of the tremendous power that is around and about you, that enfolds you, guards you, directs you and ensures that you will continue to unfold your latent divinity and the gifts which are your cherished possession."
adr;dom:Apt. #203;;1941 Gaston Place Drive;Austin;Texas;78723
email;internet:[EMAIL PROTECTED]
tel;home:512-926-5475
note:Thomas Jefferson said it best,--"Those that trade freedom for security deserve neither freedom nor security"
x-mozilla-html:TRUE
version:2.1
end:vcard

Re: [TMIC] Pain or no Pain

[Heyjude48458]

 
In a message dated 6/11/2007 11:02:49 AM Eastern Daylight Time,  
[EMAIL PROTECTED] writes:

OH I  WISH IT WAS POSSIBLE TO HAVE TM AND NO PAIN - I have such excruciating 
pain in  my lower back all the time - except when I first wake up and only 
move my  eyelids - when I start moving in the morning the pain in the lower 
back 
just  keeps esculating - at night when I'm going to go to sleep it takes a 
loritab  and 2 Tylenol PMs plus a heating pad and at times tears or a glass of  
wine to get me to sleep.


Does anybody's back pain feel as though what the earth looks  like when there 
is an earthquake?  Like, two "plates" butting up against  each other and 
sliding over and under each other?  I don't know if that's a  very good 
analogy...I'm not very good at expressing what I want to  say.
 
I also wonder what makes nerve pain so difficult to  treat.  For those of us 
who have no sensation and no promise of ever having  any feeling or ability to 
use the parts of our bodies affected by TM, why isn't  it considered poor 
advice for our doctors to tell us that it is ok to have our  nerves removed so 
that we will no longer have to deal with the continual,  unrelenting pain 
messages.
 
Peace and Prayers,
Jude
 


2 Corinthians 4:17
NLT





** See what's free at http://www.aol.com.

Re: [TMIC] Pain or no Pain

[Jim Lubin]

I had awful pain the first 2 months, so much so that I wanted to die 
so the pain would end. Decreased pain the next 3 month. Less pain the 
next 6 months or so, then none since. I haven't had any recovery 
since the first 5 months either.


Jim

At 07:34 AM 6/11/2007, Regina Rummel wrote:
Most of us suffer awful pain.  But is it possible that some of us do 
not have any pain?  I don't mean little aches here and there, I mean 
real, excruciating pain.

Can you be diagnosed with TM, and have no pain?  Is that possible?
Regina



Jim Lubin
[EMAIL PROTECTED]
http://makoa.org/jim
disAbility Resources: http://www.makoa.org

RE: [TMIC] Pain or no Pain

[Tim Holder (Work)]

After listening to everyone on this list, I feel like I have less
symptoms than most.  But, I still feel constant pain and discomfort.
So, I'm going to guess that some sort of pain is just part of everyone's
experience with TM.

Tim Holder
Worship Leader for 
Celebrate Recovery
[EMAIL PROTECTED]
(501)224-7171 ext. 1454
Fellowship Bible Church
1901 Napa Valley Drive
Little Rock, AR 72212-3913
 
 
 
 

-Original Message-
From: Regina Rummel [mailto:[EMAIL PROTECTED] 
Sent: Monday, June 11, 2007 9:34 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Pain or no Pain

Most of us suffer awful pain.  But is it possible that some of us do not
have any pain?  I don't mean little aches here and there, I mean real,
excruciating pain.
Can you be diagnosed with TM, and have no pain?  Is that possible?
Regina 

Re: [TMIC] Pain or no Pain

[cakalley]

OH I WISH IT WAS POSSIBLE TO HAVE TM AND NO PAIN - I have such excruciating pain in my lower back all the time - except when I first wake up and only move my eyelids - when I start moving in the morning the pain in the lower back just keeps esculating - at night when I'm going to go to sleep it takes a loritab and 2 Tylenol PMs plus a heating pad and at times tears or a glass of wine to get me to sleep.
I've always had a high pain tolorance and I can put up with the other pains caused by spasms but this back ache is horrible and at times it takes all I have to just "live with it".
 
Candy K.  
-Original Message- From: Regina Rummel <[EMAIL PROTECTED]>Sent: Jun 11, 2007 10:34 AM To: tmic-list@eskimo.com Subject: [TMIC] Pain or no Pain 
Most of us suffer awful pain.  But is it possible that some of us do not have any pain?  I don't mean little aches here and there, I mean real, excruciating pain.
Can you be diagnosed with TM, and have no pain?  Is that possible?
Regina 

[TMIC] Pain or no Pain

[Regina Rummel]

Most of us suffer awful pain.  But is it possible that some of us do not have 
any pain?  I don't mean little aches here and there, I mean real, excruciating 
pain.
  Can you be diagnosed with TM, and have no pain?  Is that possible?
  Regina 

RE: [TMIC] Pain

[Larry Throne]

It depends on who you talk to when you ask what state are you in, my wife might say something like "oh, he lives in Abbynormal land!"  I live in S. E. Oklahoma, about 90 miles south east of OKC. It was an internal medicine doctor doing a fellowship from Mayo Clinic who diagnosed TM. All in All I think I had about 7 to 10 spinal taps before they were able to figure it out. I think my introduction story in #304 in the members stories. If you haven't ever spent any time there I encourage you to do so. There are some amazing stories there, some real heros! Lately my pain has been mostly in my legs. It never quits. I agree with one of Franks recent post explaining donminoe effect of TM on our health. Mine has certainly gotten worse especially over the last 8 to 10 years.  But keeping busy helps me a lot.
Larry in Oklahoma where it's been a beautiful day!

Larry Throne, MSW


From: natalie mizenko <[EMAIL PROTECTED]>To: Larry Throne <[EMAIL PROTECTED]>, tmic-list@eskimo.comSubject: RE: [TMIC] PainDate: Mon, 14 May 2007 10:39:43 -0700 (PDT)








Larry,
It amazes me that dr.'s where able to diagnose your TM 30 years ago.  Can I ask what state your lived in?  What type of dr. back then was knowledgeable enough to diagnosis it?  30 years is a longgg time for TM - wow...  I've been in chronic pain for neck and back pain for 20 years.  I have never gotten use to pain.  I do realize if you get your mind off your pain; it is helpful.  One learns all kinds of tricks and trades just to ease the pain.  Thanks, NatalieLarry Throne <[EMAIL PROTECTED]> wrote: 




My legs throb, burn and ache 24/7, and it has only gotten worse over the years. I have taken just about everything and none of them really ever eliminate the pain & discomfort. I think I have just gotten used to it. That along with the constant fatigue and back/trunk pain have all stayed mostly the same. It used to leave me very depressed which helped me develop a dependence on narcotics and even alcohol. I stopped drinking or taking any pain killers or benzodiazepines 18 years ago. As I said, I was never able to find anything that worked for me but I have been taking cymbalta and that has helped with the depression. After living with TM for over thirty years I have also begun to experience age related problems. Arthritis in my hands and shoulders as well as loss of muscle strength & control have continued to plague.  But Oh, well! All I've even known 
to do was keep on going. I go slower than most people and it takes me longer to accomplish many task. But I keep doing as much as I can. I have lost a lot of ability over the last ten years but so have most people my age. It's frustrating to know there are things that I could do but can no longer muster the strength or stamina to master. But I keep on going. Don't give up! At some point, I was able to look behind me and say, hey, I survived! 
Larry in Oklahoma where it is absolutely beautiful today!

Larry Throne, MSW


From: natalie mizenko <[EMAIL PROTECTED]>To: Transverse Myellitis Subject: [TMIC] PainDate: Sat, 12 May 2007 11:43:54 -0700 (PDT)I have moderate to severe pain in my feet 24 hours a day.  They tried tons of drugs while I was at Baylor Rehab. to get it under control.  Many nights I couldn't even sleep & still up at 8:00 to 4:00 to do all the exercise groups and training they had.  Exhausted I was indeed then...but they didn't like you missing a course.  Very intense training.  Anyway, who else has burning pain like this in their feet all the time?  It really never, never leaves me.  I was checked on an MRI for MS cause my pain was so severe.  Dr. said my pain was out of the norm to be as severe as it was but she believed it was real.  Natalie


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RE: [TMIC] Pain

[natalie mizenko]

Larry,
  It amazes me that dr.'s where able to diagnose your TM 30 years ago.  Can I 
ask what state your lived in?  What type of dr. back then was knowledgeable 
enough to diagnosis it?  30 years is a longgg time for TM - wow...  I've been 
in chronic pain for neck and back pain for 20 years.  I have never gotten use 
to pain.  I do realize if you get your mind off your pain; it is helpful.  One 
learns all kinds of tricks and trades just to ease the pain.  Thanks, Natalie

Larry Throne <[EMAIL PROTECTED]> wrote: 
  


My legs throb, burn and ache 24/7, and it has only gotten worse over the 
years. I have taken just about everything and none of them really ever 
eliminate the pain & discomfort. I think I have just gotten used to it. That 
along with the constant fatigue and back/trunk pain have all stayed mostly the 
same. It used to leave me very depressed which helped me develop a dependence 
on narcotics and even alcohol. I stopped drinking or taking any pain killers or 
benzodiazepines 18 years ago. As I said, I was never able to find anything that 
worked for me but I have been taking cymbalta and that has helped with the 
depression. After living with TM for over thirty years I have also begun to 
experience age related problems. Arthritis in my hands and shoulders as well as 
loss of muscle strength & control have continued to plague.  But Oh, well! All 
I've even known to do was keep on going. I go slower than most people and it 
takes me longer to accomplish many task. But I keep doing
 as much as I can. I have lost a lot of ability over the last ten years but so 
have most people my age. It's frustrating to know there are things that I could 
do but can no longer muster the strength or stamina to master. But I keep on 
going. Don't give up! At some point, I was able to look behind me and say, hey, 
I survived! 
  Larry in Oklahoma where it is absolutely beautiful today!





Larry Throne, MSW


-
  From: natalie mizenko <[EMAIL PROTECTED]>
To: Transverse Myellitis 
Subject: [TMIC] Pain
Date: Sat, 12 May 2007 11:43:54 -0700 (PDT)

I have moderate to severe pain in my feet 24 hours a day.  They tried tons of 
drugs while I was at Baylor Rehab. to get it under control.  Many nights I 
couldn't even sleep & still up at 8:00 to 4:00 to do all the exercise groups 
and training they had.  Exhausted I was indeed then...but they didn't like you 
missing a course.  Very intense training.  Anyway, who else has burning pain 
like this in their feet all the time?  It really never, never leaves me.  I was 
checked on an MRI for MS cause my pain was so severe.  Dr. said my pain was out 
of the norm to be as severe as it was but she believed it was real.  Natalie
 
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[TMIC] Pain

[Heyjude48458]

Once again, my Neurologist recently explained to me that the  kind of pain 
that we with TM deal with, (neuropathic nerve pain) is different  than other 
kinds of pain and extremely difficult to treat.  One of the main  problems with 
neuropathic pain is that the pain can be felt at one place on the  body, but 
that place, such as the bottom of the feet, may not be where the pain  is 
actually originating.
 
Therefore, we may be feeling pain in the bottoms of our feet,  but the pain 
may actually be coming from somewhere else, triggered by...say  "pressure 
sores" on our behinds.  So, the doctors aren't sure what to focus  on and in my 
case it is impossible for the neurologist to know where the pain is  actually 
coming from.  
 
So, I am treated for the pressure sores, and for the things  that can be 
seen, either with the eye or by MRI or other tests.  The pain  in the bottom of 
my 
feet does not get treated because there is nothing there  that shows up by 
x-ray, blood tests,  etc.  It is too much to ask that  the doctors treat things 
that show no proof of being there.
 
My doctor treats me for the horrible neuropathic pain that  originates from 
the lesion caused by TM, and for the spasms, and for the  "banding" around my 
torso (which he cannot see) and  for the pain in my  legs where they were 
broken. 
 
I doubt if he can do anything for my feet except to give me  permission to 
take an extra pain pill if I need it,but he will only prescribe a  certain 
number of pain pills regardless of the extra pain.
 
For now, we concentrate on the new spasming of my upper body  and 
arms...things he can see.  If anyone does get treated for the   pain and pins 
and needles 
in their feet, please let me know, as I am supremely  interested.''
 
Thank you all for your friendship, prayers, and ongoing  patience.  Thank you 
for sharing your ideas, knowledge, and especially, for  your love.
 
Peace and Prayers,
Jude



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Re: [TMIC] Pain

[Balmatmic]

 
Anyway, who else has burning pain like this in their  feet all the time?  It 
really never, never leaves me.  I was checked  on an MRI for MS cause my pain 
was so severe.  Dr. said my pain was out of  the norm to be as severe as it 
was but she believed it was real.  Natalie  
Hello Natalie,

This one is kind of hard to answer.  I have pain 24 hrs a day also,  mine is 
from my waist level to my toes generally, but sometimes a bit  higher.  It is 
at different levels, depending upon how close it is to my  next dosage of 
Neurontin.  But, I used to think that it was at a level 8  when it got REALLY 
BAD, 
especially if my legs started to spasm.  This past  week I had overdone it, 
which I haven't done in quite a while, and I decided  that the "old" level 8 
must have really been about a level 6.  My back hurt  so bad that I was 
screaming when rubbing ICY HOT on it.  Sometimes I think  it's what our pain 
tolerance 
is at that time, and some of us have a higher  threshhold for pain.  We are 
all different, and it's often hard for doctors  to qualify our pain levels to 
see if we are exagerating or not.  They don't  want to under or over prescribe 
to us.
 
Back to overdoing it - 2 days in bed and back to almost what is normal for  
me.  I've never had that kind of pain that I can remember though for  overdoing 
it.  Well, not since the onset of my TM!  That was not even  measurable.  If 
they say that a 10 is suicidal, I guess it had to be a  9.99.  I've never even 
given suicide a thought, so it has to be darned  close to a 10.
 
Anyway, I hope all is well other than the pain.  You can't let  TM run your 
life, have to live it with TM.
 
Hugs, Barbara A in Auburn, CA
 
 




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Re: [TMIC] Pain

[Heyjude48458]

I believe that burning in the feet is a relatively common side  effect of 
either the TM itself or the medication we take.  Those who have  been to see 
Dr. 
Kerr probably have the most up to date information and maybe  they can be prom
pted to speak up on this and other new topic people have been  bringing up.
 
I have to say one thing...I know how difficult it is for some  of you to 
respond to questions you have heard and discussed time and time  again...but 
there 
willl always be new people, like myself and others who need  the input from 
those of you who have experienced it yourselves.  In return,  as time passes, 
and we gain knowledge, the job will fall on our shoulders and  you all can 
retire to the sidelines and simply send idiotic email like this at  3:30 in the 
morning.
 
Peace and Prayers,
Jude



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RE: [TMIC] Pain

[Janet Dunn]

Hi All

 

I have the constant burning pain in my feet.  I have just recently (past 10
days) come off of Lyrica and back on to gabapentin.  A few of reasons:  1)
lyrica is so expensive,  2)  I felt like I was needing the narcotics more,
3) I was wondering if my body was used to the lyrica and needed a change,
and 4) I have been "listening" to all the chatting about pain, and meds, and
by the sounds of it, the majority of us do well on gabapentin.  I am
scheduled for another MRI as it appears my legs are getting worse, and yet
at the same time they are much better than they have been in a long time.
Thanks Frank for the word picture - I am inclined to agree with you

 

Janet  

 

From: natalie mizenko [mailto:[EMAIL PROTECTED] 
Sent: May 12, 2007 11:44 AM
To: Transverse Myellitis
Subject: [TMIC] Pain

 

I have moderate to severe pain in my feet 24 hours a day.  They tried tons
of drugs while I was at Baylor Rehab. to get it under control.  Many nights
I couldn't even sleep & still up at 8:00 to 4:00 to do all the exercise
groups and training they had.  Exhausted I was indeed then...but they didn't
like you missing a course.  Very intense training.  Anyway, who else has
burning pain like this in their feet all the time?  It really never, never
leaves me.  I was checked on an MRI for MS cause my pain was so severe.  Dr.
said my pain was out of the norm to be as severe as it was but she believed
it was real.  Natalie

  

  _  

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RE: [TMIC] Pain

[pjv1234]

Larry you're an inspiration!

Patti
 Larry Throne <[EMAIL PROTECTED]> wrote: 

=

RE: [TMIC] Pain

[Larry Throne]

My legs throb, burn and ache 24/7, and it has only gotten worse over the years. I have taken just about everything and none of them really ever eliminate the pain & discomfort. I think I have just gotten used to it. That along with the constant fatigue and back/trunk pain have all stayed mostly the same. It used to leave me very depressed which helped me develop a dependence on narcotics and even alcohol. I stopped drinking or taking any pain killers or benzodiazepines 18 years ago. As I said, I was never able to find anything that worked for me but I have been taking cymbalta and that has helped with the depression. After living with TM for over thirty years I have also begun to experience age related problems. Arthritis in my hands and shoulders as well as loss of muscle strength & control have continued to plague.  But Oh, well! All I've even known to 
do was keep on going. I go slower than most people and it takes me longer to accomplish many task. But I keep doing as much as I can. I have lost a lot of ability over the last ten years but so have most people my age. It's frustrating to know there are things that I could do but can no longer muster the strength or stamina to master. But I keep on going. Don't give up! At some point, I was able to look behind me and say, hey, I survived! 
Larry in Oklahoma where it is absolutely beautiful today!

Larry Throne, MSW


From: natalie mizenko <[EMAIL PROTECTED]>To: Transverse Myellitis Subject: [TMIC] PainDate: Sat, 12 May 2007 11:43:54 -0700 (PDT)I have moderate to severe pain in my feet 24 hours a day.  They tried tons of drugs while I was at Baylor Rehab. to get it under control.  Many nights I couldn't even sleep & still up at 8:00 to 4:00 to do all the exercise groups and training they had.  Exhausted I was indeed then...but they didn't like you missing a course.  Very intense training.  Anyway, who else has burning pain like this in their feet all the time?  It really never, never leaves me.  I was checked on an MRI for MS cause my pain was so severe.  Dr. said my pain was out of the norm to be as severe as it was but she believed it was real.  Natalie


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Re: [TMIC] Pain

[ashfordrichard]

Natalie, I had that same burnins sensation on the bottom of my feet. I 
don'tknow wht but that sensation was replaced with a vibrating type feeling 
that is more agrivating than painful. Although it does hurt. I know that  your 
pain is also hard to explain. These Doctors cannot know how that pain if ther 
was a good way to tell them I'm sure we after so many years we wouldn't still 
be having these conservations. I think the only man who could putinto words 
that Drs. would understand would be Dr. FrankSheldon. Of course now that he has 
been retired I am not sure with just living with TM, leaves his plate pretty 
full. But knowing the fact is that he is a good man and willing to get 
involved. Type an e-mail to him and see if he can help you. if he can he will. 
Love and Prayers Rick
> 
> From: natalie mizenko <[EMAIL PROTECTED]>
> Date: 2007/05/12 Sat PM 02:43:54 EDT
> To: Transverse Myellitis 
> Subject: [TMIC] Pain
> 
> 

[TMIC] Pain

[natalie mizenko]

I have moderate to severe pain in my feet 24 hours a day.  They tried tons of 
drugs while I was at Baylor Rehab. to get it under control.  Many nights I 
couldn't even sleep & still up at 8:00 to 4:00 to do all the exercise groups 
and training they had.  Exhausted I was indeed then...but they didn't like you 
missing a course.  Very intense training.  Anyway, who else has burning pain 
like this in their feet all the time?  It really never, never leaves me.  I was 
checked on an MRI for MS cause my pain was so severe.  Dr. said my pain was out 
of the norm to be as severe as it was but she believed it was real.  Natalie
   
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Re: [TMIC] Pain vs No pain

[Stacy Harim]

Ken, I'm a t 7/8 para and have swelling in  my legs.  I was prescribed lasix 
for it.  When I was up for many hours a day I took it once a day.  I don’t take 
it as much anymore because I don't stay up that long.  I do take it on occasion 
when my legs and feet get bad.

Cody, yours must be pretty bad to have to go through all of that, huh?

Stacy
  - Original Message - 
  From: cwk<mailto:[EMAIL PROTECTED]> 
  To: Kenneth Oliver<mailto:[EMAIL PROTECTED]> ; 
Tmic-list@eskimo.com<mailto:Tmic-list@eskimo.com> 
  Sent: Thursday, March 15, 2007 9:57 PM
  Subject: Re: [TMIC] Pain vs No pain


  Ken.I just completed a one month therapy program at St. Davids Hospital 
in Austin for swelling in my legs. It is called lymphedema therapy (swelling in 
the lymph glands). It included weekly massaging, wrapping my legs with foam and 
gauze materal, weekly measurement of my legs. They also ordered me  a machine 
that pumps air into two bags zipped around each leg to massage them. About one 
hour each day. My wife usually put them on me in the morning and I went back to 
sleep. At the end of the one month program I was fitted with compression hose 
which I now wear everyday. I was getting blood clots and sores on my legs so I 
had to do something. Let me know if you need a phone number or anything. It was 
all paid for by medicare. Others on the list can check with their doctor about 
Lymphedema Clinics in their area. I had really good success with my threapy. I 
have an excel spreadsheet and graph where I tracked my progress if anyone is 
interested.Cody in Austin   
- Original Message - 
From: Kenneth Oliver<mailto:[EMAIL PROTECTED]> 
To: [EMAIL PROTECTED]<mailto:[EMAIL PROTECTED]> ; [EMAIL 
PROTECTED]<mailto:[EMAIL PROTECTED]> ; 
Tmic-list@eskimo.com<mailto:Tmic-list@eskimo.com> 
Sent: Tuesday, March 13, 2007 12:01 AM
Subject: Re: [TMIC] Pain vs No pain






Hi Kevin,

I have had TM since 1981 and in that time I haven't had a dozen days 
without pain.  Sometimes days it gets hard to bear, but I gave up the so called 
pain relievers, all I take now is a couple of anacin for headaches. My pain is 
from the waist, where I still have banding , to my feet.  All these years I 
have felt like my feet were in a pan of hot water, yet I have had a toe nail 
removed with no pain from that.  I attribute all of my pain to nerves 
redirecting the signals. I'm a C7 , limited to a power chair.

I have question, have you or anyone else on the list, had any trouble with 
feet and legs swelling?  If so have you found any help for this.

Ken in Central Tx




--

  From:  Kevin Wolfthal <[EMAIL PROTECTED]>
  To:  [EMAIL PROTECTED], Tmic-list@eskimo.com
  Subject:  Re: [TMIC] Pain vs No pain
  Date:  Fri, 09 Mar 2007 19:01:10 -0500
  >Hi Patty,
  >
  >I think I understand what you mean.  Are you saying that at least 
  >those
  >of us with TM feel *something* and you have no sensation at all?
  >
  >As one of those who has had pain since the onset of TM in 1988, 
  >that's
  >almost 20 years, I can tell you it is nothing to be envious of.  It 
  >makes
  >me pray many nights that I pass in my sleep.  But I don't envy those
  >who have no feeling at all.  I am one of the 'walking wounded', so
  >I guess I am one of the lucky ones.  Just doesn't feel lucky though.
  >
  >Take care,
  >Kevin
  >
  >
  >
  >
  >
  >
  >
  >
  >
  >
  >[EMAIL PROTECTED] wrote:
  >>I am always surprised and admittably envious to hear of a TMer who 
  >>does have pain.  I  always ask myself how this is can be possible.  
  >>  I know  we are all different, but  this  is  one difference I 
  >>really don't understand.
  >>
  >>Patti - Michigan
  >>
  >>
  >>
  >>
  >

Re: [TMIC] Pain vs No pain

[Heyjude48458]

 
.  I only take anacin when I get a headache, I  have not had anything take 
away the pain for all these  years. 
Ken 
Yes, Ken...but how do you manage to get through the long days and  nights?  I 
am really serious.  I'd like to be able to go without all  of the medications 
I take, but the pain seems so terrible. 
Does the pain go away eventually?  Or do you use  alternate techniques to 
help, like relaxation tapes or anything? 
I certainly commend you for being able to tough it out.  If you  can help me 
in any way I would surely appreciate it. 
Peace and Prayers, 
Jude



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Re: [TMIC] Pain vs No pain

[cwk]

Ken.I just completed a one month therapy program at St. Davids Hospital in 
Austin for swelling in my legs. It is called lymphedema therapy (swelling in 
the lymph glands). It included weekly massaging, wrapping my legs with foam and 
gauze materal, weekly measurement of my legs. They also ordered me  a machine 
that pumps air into two bags zipped around each leg to massage them. About one 
hour each day. My wife usually put them on me in the morning and I went back to 
sleep. At the end of the one month program I was fitted with compression hose 
which I now wear everyday. I was getting blood clots and sores on my legs so I 
had to do something. Let me know if you need a phone number or anything. It was 
all paid for by medicare. Others on the list can check with their doctor about 
Lymphedema Clinics in their area. I had really good success with my threapy. I 
have an excel spreadsheet and graph where I tracked my progress if anyone is 
interested.Cody in Austin   
  - Original Message - 
  From: Kenneth Oliver 
  To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; Tmic-list@eskimo.com 
  Sent: Tuesday, March 13, 2007 12:01 AM
  Subject: Re: [TMIC] Pain vs No pain






  Hi Kevin,

  I have had TM since 1981 and in that time I haven't had a dozen days without 
pain.  Sometimes days it gets hard to bear, but I gave up the so called pain 
relievers, all I take now is a couple of anacin for headaches. My pain is from 
the waist, where I still have banding , to my feet.  All these years I have 
felt like my feet were in a pan of hot water, yet I have had a toe nail removed 
with no pain from that.  I attribute all of my pain to nerves redirecting the 
signals. I'm a C7 , limited to a power chair.

  I have question, have you or anyone else on the list, had any trouble with 
feet and legs swelling?  If so have you found any help for this.

  Ken in Central Tx






From:  Kevin Wolfthal <[EMAIL PROTECTED]>
To:  [EMAIL PROTECTED], Tmic-list@eskimo.com
    Subject:  Re: [TMIC] Pain vs No pain
Date:  Fri, 09 Mar 2007 19:01:10 -0500
>Hi Patty,
>
>I think I understand what you mean.  Are you saying that at least 
>those
>of us with TM feel *something* and you have no sensation at all?
>
>As one of those who has had pain since the onset of TM in 1988, 
>that's
>almost 20 years, I can tell you it is nothing to be envious of.  It 
>makes
>me pray many nights that I pass in my sleep.  But I don't envy those
>who have no feeling at all.  I am one of the 'walking wounded', so
>I guess I am one of the lucky ones.  Just doesn't feel lucky though.
>
>Take care,
>Kevin
>
>
>
>
>
>
>
>
>
>
>[EMAIL PROTECTED] wrote:
>>I am always surprised and admittably envious to hear of a TMer who 
>>does have pain.  I  always ask myself how this is can be possible.  
>>  I know  we are all different, but  this  is  one difference I 
>>really don't understand.
>>
>>Patti - Michigan
>>
>>
>>
>>
>

Re: [TMIC] Pain vs No pain

[[EMAIL PROTECTED]]

> My legs and feet swell and turn dark purple when they  are in a downward 
> position, but all the tests have come back negative for  circulatory 
> problems, 
> even though they sometimes become icy cold to the  touch.\

Hi,

It's very simple if you think back to med school:

Circulation in the capillary beds is affected by NEUROLOGICAL  CONTROL.

We have lost  NEUROLOGICAL  CONTROL secondary to the T.M. Lesion, so our legs 
swell and get cold, and actually our hands and arms get cold easily and have 
trouble warming up.

The answer is so simple, even a first year medical sudent would know the 
answer, but doctors have more to worry about: student loans, malpractice 
insurance, morgages, boat payments, country club dues, yacht club dues, rental 
payments for mistress's apartment, etc.

hope that enlightens.

pH

Re: [TMIC] Pain vs No pain

[Heyjude48458]

Hi Ken,
 
My legs and feet swell and turn dark purple when they  are in a downward 
position, but all the tests have come back negative for  circulatory problems, 
even though they sometimes become icy cold to the  touch.
 
My new doctor is trying to handle one symptom at a  time, then well look at 
everything as a whole and see where we are at that  time.  So, I haven't 
approached him with this one in  detail although  I have mentioned it.
 
Peace and Prayers,
Jude



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Fwd: [TMIC] Pain vs No pain

[Heyjude48458]

 
In a message dated 3/15/2007 11:36:01 AM Eastern Daylight Time,  
[EMAIL PROTECTED] writes:

.  I only take anacin when I get a headache, I have  not had anything take 
away the pain for all these years. 
Ken


Hi Ken,
 
How do you manage all of the pain that you describe  without taking pain 
medications?  It sounds like we have a lot of the same  symptoms and although I 
have never tried going without relief, I can't imagine  what it will feel like. 
 
Part of me would like to try it and part of me is  scared to.
 
Peace and Prayers,
Jude



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--- Begin Message ---
I can't say that I get any real pain (except when I fall on the floor,
which hasn't happened in months due to walker now) but I do get tingling
and muscle spasms AND stiffness.
 
BERNARD BUTCHER
 



From: Kenneth Oliver [mailto:[EMAIL PROTECTED] 
Sent: Wednesday, March 14, 2007 12:29 AM
To: Butcher, Bernie [S&FS]; [EMAIL PROTECTED]; Tmic-list@eskimo.com
Subject: RE: [TMIC] Pain vs No pain



Hi Bernie

I am C7 and have normal feelings from just above the upper shoulder
blade, but the burning stinging pain is from there down, with my feet
and lower legs are nearly always burning like being in hot water. My
left arm and right side from the waist down is where the most pain is.
I only take anacin when I get a headache, I have not had anything take
away the pain for all these years.

Ken



 




From: "Butcher, Bernie [S&FS]" <[EMAIL PROTECTED]>
To: <[EMAIL PROTECTED]>, <[EMAIL PROTECTED]>,

Subject: RE: [TMIC] Pain vs No pain
Date: Tue, 13 Mar 2007 09:19:57 -0400


My ankles swell also (I am a C4, left side affected - arm & leg)
- I get around slowly with a walker. My PT told me it's from spinal
cord. I wear compression socks & take Triamterine, which help, but still
swell.
 
BERNARD BUTCHER
 



From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Tuesday, March 13, 2007 9:11 AM
    To: [EMAIL PROTECTED]; Tmic-list@eskimo.com
Subject: Re: [TMIC] Pain vs No pain



Hi Ken,
 
My left hand and right calf and ankle (which were the limbs
worst affected by TM) have been a little swollen ever since onset -- no
idea why.
 
Barbara H.
http://barbarah.wordpress.com/ <http://barbarah.wordpress.com/> 
 
In a message dated 3/13/2007 1:01:50 AM Eastern Daylight Time,
[EMAIL PROTECTED] writes:

I have question, have you or anyone else on the list,
had any trouble with feet and legs swelling?  If so have you found any
help for this.

Ken in Central Tx

 






AOL now offers free email to everyone. Find out more about
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<http://www.aol.com/?ncid=AOLAOF0002000339> . 
--- End Message ---

Re: RE: RE: [TMIC] Pain vs No pain

[Candis Kalley]

Yes they are WONDERFUL.  The first I have been able, other than in my
electric bed, to be comfortable - even without the heat or massage.  

Since there are few male student nurses aroung here, the chair is a GOD
sent.  I just have to make my own drinks.


> [Original Message]
> From: [EMAIL PROTECTED] <[EMAIL PROTECTED]>
> To: <[EMAIL PROTECTED]>; <[EMAIL PROTECTED]>; Bernie [S&FS]
<[EMAIL PROTECTED]>; <[EMAIL PROTECTED]>; Kenneth Oliver
<[EMAIL PROTECTED]>; 
> Date: 3/14/2007 4:27:29 PM
> Subject: Re: RE: RE: [TMIC] Pain vs No pain
>
>
> > I just purchased a HoMedics AntiGravity Recliner with Message and Heat.
>
> Aren't they wonderful??
>
> I bought mine several years ago- very plain- no heat, no vibration.  cost
$100, approx.
>
> With the money I saved, I can hire attractive young nursing students to
massage my body, and pass me tall drinks with umbrellas and straws.
>
> pH

Re: [TMIC] Pain vs No pain

[Candis Kalley]

Hi Kevin.

So far I have not had any problem getting in or out.  I still have to use both 
arm rests to push myself up, but that occurs with any chair.  

The prices on Ebay are much better than any store I found.  A plus is that they 
arrive at your home - no extra charge for delivery - shipping/handling is added 
with any eby item but you still can save $50 to $150.

Hope you are able to get one of the chairs.  They are great.

Candy K.


- Original Message - 
From: Kevin Wolfthal 
To: [EMAIL PROTECTED];Tmic-list@eskimo.com
Sent: 3/14/2007 3:22:01 PM 
Subject: Re: [TMIC] Pain vs No pain



Hi Candy,

I'm going to need a new recliner because the handle that raises the leg-rest
on my old lounge chair is broken.  Just wondering, how difficult is it
to get in and out of your new chair?  

I'd love to get one of the recliners Sharper Image sells, but they are
a little high priced.

Good luck with the new chair!

Kevin





Candis Kalley wrote: 
I just purchased a HoMedics AntiGravity Recliner with Message and Heat.  I
was able to get it on Ebay for $215 with shipping.  I had to have a
neighbor put it together which was something BUT worth it.

I have such terrible backaches along with the swelling of my right ankle. 
I am able to get my feet above the heart level which helps with the
swelling.  The message and heat helps the back ALSO the way the chair is
made it seems to take pressure off my back and tailbone - atleast I don't
have the back pain as in my regular reclining chair.

I have spent a fortune on pillows, massagers, and heating pads this past
year.  So far, it appears that the HoMedics AntiGravity Recliner may be the
answer.

My thoughts and prayers are with everyone.  We are in the same boat and
sometimes I feel as if there aren't oars.   Atleast this website gives a
lifeline.

Candy K.

  
[Original Message]
From: [EMAIL PROTECTED] <[EMAIL PROTECTED]>
To: <[EMAIL PROTECTED]>; Bernie [S&FS]

<[EMAIL PROTECTED]>; <[EMAIL PROTECTED]>; Kenneth Oliver
<[EMAIL PROTECTED]>; 
  
Date: 3/13/2007 4:22:41 PM
Subject: Re: RE: RE: [TMIC] Pain vs No pain



Completely upside down? - I'll try the pillows first. 
  
Completely upside down.  I strap my ankles in lie back- the bed is

horizontal at this point, but when I move my arms over my head, It swings
vertical, me hanging.
  
Feels great

F




  

Re: RE: RE: [TMIC] Pain vs No pain

[[EMAIL PROTECTED]]

> I just purchased a HoMedics AntiGravity Recliner with Message and Heat.

Aren't they wonderful??

I bought mine several years ago- very plain- no heat, no vibration.  cost $100, 
approx.

With the money I saved, I can hire attractive young nursing students to massage 
my body, and pass me tall drinks with umbrellas and straws.

pH