Re: [TMIC] Pain management doctor
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 pjv1...@chartermi.net To: tmic tmic-list@eskimo.com 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
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
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 pjv1...@chartermi.net To: tmic tmic-list@eskimo.com 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
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
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 fr...@franksheldon.com To: Robert Pall robthe...@aol.com; 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, 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 fr...@franksheldon.com To: Robert Pall robthe...@aol.com; 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 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 pjv1...@chartermi.net To: tmic tmic-list@eskimo.com 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
same for me with the baclofen. From: heyjude48...@aol.com 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 pjv1...@chartermi.net To: tmic tmic-list@eskimo.com 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
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, 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
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
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
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 doctor
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
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
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
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
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 fr...@franksheldon.com To: Heyjude48458 heyjude48...@aol.com; pjv1234 pjv1...@chartermi.net Cc: tmic-list tmic-list@eskimo.com 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
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 fr...@franksheldon.com To: Heyjude48458 heyjude48...@aol.com; pjv1234 pjv1...@chartermi.net Cc: tmic-list tmic-list@eskimo.com 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
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
a couple of years ago it didnt help me but it does nowodd From: Robert Pall robthe...@aol.com 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 fr...@franksheldon.com To: Heyjude48458 heyjude48...@aol.com; pjv1234 pjv1...@chartermi.net Cc: tmic-list tmic-list@eskimo.com 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
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
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
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 skle...@cox.net Date: Wed, 8 Feb 2012 20:57:45 -0700 To: Janice Nichols jan...@centurytel.net Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Pain Resent-From: tmic-list@eskimo.com 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
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 skle...@cox.net Date: Wed, 8 Feb 2012 20:57:45 -0700 To: Janice Nichols jan...@centurytel.net Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Pain Resent-From: tmic-list@eskimo.com 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
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 skle...@cox.net Date: Wed, 8 Feb 2012 20:57:45 -0700 To: Janice Nichols jan...@centurytel.net Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Pain Resent-From: tmic-list@eskimo.com 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
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 skle...@cox.net Date: Wed, 8 Feb 2012 20:57:45 -0700 To: Janice Nichols jan...@centurytel.net Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Pain Resent-From: tmic-list@eskimo.com 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
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 Pump
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
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 cindymcle...@socal.rr.com To: LadyNotes ladyno...@aol.com 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.
Re: [TMIC] Pain Pump
Thank you Todd, for the information and the prayers Have a Blessed Day, Naomi -Original Message- From: Todd Tarno toddtm2...@sbcglobal.net To: LadyNotes ladyno...@aol.com 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 ladyno...@aol.com wrote: From: ladyno...@aol.com 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 management ideas
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
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
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 fr...@franksheldon.com wrote: From: fr...@franksheldon.com fr...@franksheldon.com Subject: Re: [TMIC] pain management ideas To: john snodgrass jcs...@yahoo.com, Dennis Rabalais drabala...@gt.rr.com Cc: transverse myelitis tmic-list@eskimo.com 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
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) --
Fwd: Re: [TMIC] pain management ideas
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
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 fr...@franksheldon.com wrote: From: fr...@franksheldon.com fr...@franksheldon.com Subject: Re: [TMIC] pain management ideas To: john snodgrass jcs...@yahoo.com, Dennis Rabalais drabala...@gt.rr.com Cc: transverse myelitis tmic-list@eskimo.com 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
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 drabala...@gt.rr.com wrote: From: Dennis Rabalais drabala...@gt.rr.com Subject: [TMIC] pain management ideas To: tmic tmic-list@eskimo.com 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
Re: [TMIC] Pain
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: Janicemailto:jan...@centurytel.net To: transverse myelitismailto: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
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 jan...@centurytel.net 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
Re: [TMIC] Pain Drugs
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 a...@artfarm.com 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 --
Re: [TMIC] Pain
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, heyjude48...@aol.com 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 nowhttp://www.aol.com/?optin=new-dpicid=aolcom40vanityncid=emlcntaolcom0025 .
Re: [TMIC] Pain Med Ultram ER (Tramadol)
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 tmic-list@eskimo.com 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.
Re: [TMIC] Pain
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 Its 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
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
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,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 Vicodinfor 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 -0400I tried Cymbalta and didn't tolerate it, same with Lyrica unfortunately. Xanax keeps myheart rate normal and never made me sick. I take the smallest possible dose and quantity per dayusually one or two, though I am allowed more.All medications are potentially dangerous, even baby aspirin canmake you bleed internally. I am very careful about how I takedrugs so I don't misuse them.KevinLarry 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 roadLarry 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. RIts the Windows Live Hotmail® you love on your phone! http://g.msn.com/8HMBENUS/2752??PS=47575
RE: [TMIC] Pain
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 Its the Windows Live Hotmail® you love on your phone!
Re: [TMIC] Pain
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 or no Pain
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 Relief
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
Re: [TMIC] Pain or no Pain
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 or no pain
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
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
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
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
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 wineto get me to sleep. I've always had a high pain tolorance and I can put up with the other painscaused by spasmsbut 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
RE: [TMIC] Pain or no Pain
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
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
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
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 tmic-list@eskimo.com 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 - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. - Catch suspicious messages before you open themwith Windows Live Hotmail. - Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search.
RE: [TMIC] Pain
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 tmic-list@eskimo.comSubject: [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 Moody friends. Drama queens. Your life? Nope! - their life, your story.Play Sims Stories at Yahoo! Games. Catch suspicious messages before you open themwith Windows Live Hotmail. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. Like the way Microsoft Office Outlook works? Youll love Windows Live Hotmail.
Re: [TMIC] Pain
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 ** See what's free at http://www.aol.com.
Re: [TMIC] Pain
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 tmic-list@eskimo.com Subject: [TMIC] Pain
RE: [TMIC] Pain
Larry you're an inspiration! Patti Larry Throne [EMAIL PROTECTED] wrote: =
RE: [TMIC] Pain
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 _ Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims http://us.rd.yahoo.com/evt=48224/*http:/sims.yahoo.com/ Stories at Yahoo! Games.
Re: [TMIC] Pain vs No pain
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: cwkmailto:[EMAIL PROTECTED] To: Kenneth Olivermailto:[EMAIL PROTECTED] ; Tmic-list@eskimo.commailto: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 Olivermailto:[EMAIL PROTECTED] To: [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] ; [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] ; Tmic-list@eskimo.commailto: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
. 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 ** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
Re: [TMIC] Pain vs No pain
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 ** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
Re: [TMIC] Pain vs No pain
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
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
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 [SFS]; [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 [SFS] [EMAIL PROTECTED] To: [EMAIL PROTECTED], [EMAIL PROTECTED], Tmic-list@eskimo.com 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 what's free from AOL at AOL.com http://www.aol.com/?ncid=AOLAOF0002000339 .
Re: RE: RE: [TMIC] Pain vs No pain
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 [SFS] [EMAIL PROTECTED]; [EMAIL PROTECTED]; Kenneth Oliver [EMAIL PROTECTED]; Tmic-list@eskimo.com 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: [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 [SFS] [EMAIL PROTECTED]; [EMAIL PROTECTED]; Kenneth Oliver [EMAIL PROTECTED]; Tmic-list@eskimo.com 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
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
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 [SFS] [EMAIL PROTECTED]; [EMAIL PROTECTED]; Kenneth Oliver [EMAIL PROTECTED]; Tmic-list@eskimo.com 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
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 [SFS] [EMAIL PROTECTED]; [EMAIL PROTECTED]; Kenneth Oliver [EMAIL PROTECTED]; Tmic-list@eskimo.com 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
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 BRBRBR**BR AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
RE: [TMIC] Pain vs No pain
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 what's free from AOL at AOL.com http://www.aol.com?ncid=AOLAOF0002000339 .
Re: [TMIC] Pain vs No pain
Ken, I get swelling of my left leg- the leg most affected neurologically. the only thing is to get my feet above my heart. I use an inversion apparatus to flip up and hand by my ankles. It also helps my low back! lying down on your back with tw pillows under your calves woorks too. hope that helps F
RE: [TMIC] Pain vs No pain
Thanks Frank how long do you hold this pose? BERNARD BUTCHER -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, March 13, 2007 9:30 AM To: Kenneth Oliver; Tmic-list@eskimo.com Subject: Re: [TMIC] Pain vs No pain Ken, I get swelling of my left leg- the leg most affected neurologically. the only thing is to get my feet above my heart. I use an inversion apparatus to flip up and hand by my ankles. It also helps my low back! lying down on your back with tw pillows under your calves woorks too. hope that helps F
Re: RE: [TMIC] Pain vs No pain
I hang my ankles 30 minutes, twice a day. my legs/ ankles are locked into a foam filled ankle cuff Cumfy! f
RE: RE: [TMIC] Pain vs No pain
Completely upside down? - I'll try the pillows first. BERNARD BUTCHER -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, March 13, 2007 9:47 AM To: Butcher; Butcher, Bernie [SFS]; Kenneth Oliver; Tmic-list@eskimo.com Subject: Re: RE: [TMIC] Pain vs No pain I hang my ankles 30 minutes, twice a day. my legs/ ankles are locked into a foam filled ankle cuff Cumfy! f
RE: RE: [TMIC] Pain vs No pain
Completely upside down? - I'll try the pillows first. BERNARD BUTCHER -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, March 13, 2007 9:47 AM To: Butcher; Butcher, Bernie [SFS]; Kenneth Oliver; Tmic-list@eskimo.com Subject: Re: RE: [TMIC] Pain vs No pain I hang my ankles 30 minutes, twice a day. my legs/ ankles are locked into a foam filled ankle cuff Cumfy! f
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
I think my college kids used to do that with a beer bong attached!! Trudy -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, March 13, 2007 4:22 PM To: [EMAIL PROTECTED]; Bernie [SFS]; [EMAIL PROTECTED]; Kenneth Oliver; Tmic-list@eskimo.com 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: [TMIC] Pain vs No pain
Hi Barbara, thanks for the reply, we have some of the same results of tm. My left hand and right leg are the most affected. My right leg has always been undependable. The last five years both hips and knees have let me down quite often. I guess I can't complain too much, I'll be 82 April first. Just hope I can hang in there for awhile longer. Ken in rain soaked Central Tx. From: [EMAIL PROTECTED]To: [EMAIL PROTECTED], Tmic-list@eskimo.comSubject: Re: [TMIC] Pain vs No painDate: Tue, 13 Mar 2007 09:11:20 EDT 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/ 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 what's free from AOL at AOL.com.
Re: [TMIC] Pain vs No pain
Hi Kevin, I have had TM since 1981 and in that timeI 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.comSubject:Re: [TMIC] Pain vs No painDate:Fri, 09 Mar 2007 19:01:10 -0500Hi Patty,I think I understand what you mean.Are you saying that at least thoseof 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'salmost 20 years, I can tell you it is nothing to be envious of.It makesme pray many nights that I pass in my sleep.But I don't envy thosewho have no feeling at all.I am one of the 'walking wounded', soI 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.Ialways ask myself how this is can be possible.I knowwe are all different, butthisisone difference I really don't understand.Patti - Michigan
Re: [TMIC] Pain vs No pain
I guess it depends on which nerves were affected. Just like some have paralysis and others don't, some have the burning/freezing feeling and some don't. Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 3/9/2007 11:35:26 AM Eastern Standard Time, [EMAIL PROTECTED] writes: 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 BRBRBR**BR AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
Re: [TMIC] Pain vs No pain
What's hard for me to understand is that I have pain in places that are also numb. One doctor called it similar to 'missing limb' syndrome, where people who have lost limbs still feel pain in those limbs. 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
Envious? You're envious of people that are in pain? [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
I had a lot of pain the first 4 months. I just wanted to die so the pain would stop. I was getting morphine injects and taking a pain cocktail. Around the 5th month I wasn't feeling the pain the same way. I remember telling the doctors that I didn't think I needed the pain cocktail because I wasn't feeling the pain the way I was. Besides it made me kind of sleepy all the time. The doctors told me I wasn't feeling the pain because I was on the pain cocktail and I needed to continue it. I did for a few days and then started refusing to take it. I felt some pain but nothing that a few Tylenol couldn't take care of. Eventually that pain went away too. The trade-off to not feeling pain, I never had any other recovery. It's been 18 years and I'm still paralyzed from the neck down and dependent on a ventilator to breathe. At 08:34 AM 3/9/2007, [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 Jim Lubin [EMAIL PROTECTED] http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] Pain vs No pain
I am always surprised and admittably envious to hear of a TMer who does have pain. Patty, You want to switch symptoms? Any Time, my dear!! I have central pain from my shoulders down- no part untouched! F
Re: [TMIC] Pain vs No pain
James Bray wrote: It is just *perceived* to be in the leg, because the spinal nerves damaged are the the ones that control sensation for that part of the body. Lol - I really should check before posting. i meant to say perceived to be where you are feeling pain.
Re: [TMIC] Pain vs No pain
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
No Jim, you caught a typo that I missed. I meant to say that I'm envious of people who do NOT have pain. Sorry Patti James Bray [EMAIL PROTECTED] wrote: = Envious? You're envious of people that are in pain? [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
I guess typos are also a symptom of TM! Patti James Bray [EMAIL PROTECTED] wrote: = James Bray wrote: It is just *perceived* to be in the leg, because the spinal nerves damaged are the the ones that control sensation for that part of the body. Lol - I really should check before posting. i meant to say perceived to be where you are feeling pain.
Re: [TMIC] Pain vs No pain
Ah, yes. That's me: burning-freezing feeling. I hadn't heard anyone describe it before, but that's exactly it for me!
Re: [TMIC] pain meds
Gary, I am very sorry to hear about your uncle. He was pretty young, and although he was going through quite a bit himself, he still found it in his heart to ask about how you were doing. He must've been a very caring person. Still snowy in Michigan, Naomi C-4 quad since July 2, 2005
Re: [TMIC] pain meds
Cannabinoids? That's medical marijuana, isns't it? I saw my neuro. Monday, and asked her about a prescription. She was horrified! No way, she said, she wasn't about to open herself up for legal problems. And she is also a clinical instructor at UCSF. And... there is a store in S.F. that sells medical marijuana... I don't get it... Regina, Strange, isn't it? your neuro could write a prescription stating your diagnosis and the statement, Regina might benefit from using cannabinoids to reduce her symptoms. This prescription is taken to your cityhall, I think, and they will give you a identification card ( may cost $50, call first to find place and cost). Then you can go to any local cannabinoid (Med. Marihuana) stores and buy your own. Google Neurology click on the journal, then click on current issue look for the article, click on abstract copy and paste the title and abstract to a black page of word or whatever writing application you use and print it out. Send this to your neurologist. You could also ask her to contact Dr. Doug Kerr at Johns hopkins Univ, or Dr. Mark Ware at the Montreal General Hosp. Pain Clinic, McGill Univ., school of med., montreal for reassurance. good luck, frank sheldon, md,cm, and patient with tm. copy this e-mail and send this along with the abstract. your neuro. could contact me by e-mail if needed
