[TMIC] fatigue
Gary, I hope your out-of-town siblings know and care how much you are doing to keep your Mom and Dad comfortable in their old age. You must be exhausted. You certainly have a full plate. Are you working also? Pati - also in Michigan and watching the leaves faling one after another - beautiful!
Re: [TMIC] fatigue
Cheryl, I hope you recover from your “day out” quickly. This is a nasty disease, but at least it is not terminal.I have 2 friends that will probably be celebrating their last Christmas this year and they know it. Just hang on til you start feeling better.You are strong and can do this. I wish for you the very best, Janice From: rn11...@yahoo.com Sent: Wednesday, December 08, 2010 9:58 AM To: tmic-list@eskimo.com Subject: [TMIC] fatigue Today I had a routine doctor's appt.@ 8:30. My sister and brother-in-law picked me up at 8. Rode 20 min. in car ;got in right away to office. Answered questions,vitals checked,etc. Waited a few min. for doc. He came in discussed my issues,showed him my right heel which split open a few days ago.Got scripts printed out for all my meds,a walker,and a shower chair. Had 3 vials of blood drawn,peed in a cup After that went to pharmacy for silver sulfadiazine cream for my foot.Finally got home at 10:15. Everything is sore and achy and the banding is super tight. I am exhausted and will suffer for days from 2 hrs and 15 minutes of walking and sitting. I seldom let tm get to me,but today is a bad day.How I hate this disease! Cheryl in Easthampton,MA
[TMIC] fatigue
Today I had a routine doctor's appt.@ 8:30. My sister and brother-in-law picked me up at 8. Rode 20 min. in car ;got in right away to office. Answered questions,vitals checked,etc. Waited a few min. for doc. He came in discussed my issues,showed him my right heel which split open a few days ago.Got scripts printed out for all my meds,a walker,and a shower chair. Had 3 vials of blood drawn,peed in a cup After that went to pharmacy for silver sulfadiazine cream for my foot.Finally got home at 10:15. Everything is sore and achy and the banding is super tight. I am exhausted and will suffer for days from 2 hrs and 15 minutes of walking and sitting. I seldom let tm get to me,but today is a bad day.How I hate this disease! Cheryl in Easthampton,MA
Re: [TMIC] fatigue
Cheryl in Easthampton,MA Big warm hugs, Cheryl! It's winter and cold. Tonight they said it would go down to 12 degrees. The days are short and getting shorter. Darkness comes early. You did goood to be up and out so early and get all of that done. Be kind to yourself. Rent a good movie ( I think Inception will be my on-demand holiday treat) Akua --
[TMIC] Fatigue Meds
I live exhausted every day from the moment I wake up to the moment I go to bed. I've tried all the meds my doctors suggested to no use. Came to the conclusion that it makes no sense to subject myself to side effects when pills are useless. Bottom line, we live with the residuals of TM's attack, and fatigue affects us big time. I just take Neurontin even though I doubt it does me any good. If I mention it to my neuro, I can guarantee that she will advise me to triple the dose or more. Your many comments prompted me to add mine. I've accepted fatigue as part of my many other symptoms, but only RELUCTANTLY. Take care. R
[TMIC] Fatigue
Hi everybody, I just read the post I sent this morning and must apologize for it. It's more depressing than I meant it to be. Surely, there is lots we can do to help with fatigue. Seriously, I'm sorry. R
Re: [TMIC] Fatigue
Regina, I think that each and everyone of us understands about the fatigue. As I've said, I've tried so many things - old remedies that I used before TM that would boast me up to do all my own house repairs, house cleaning, laundry, yard work while working 40 to 70 hours a week. New remedies as listed on here, what Dr.Oz says, anything reported to help boost energy! All to no avail in conquerng TM fatigue! I've come to the conclusion that fatigue is a TM complication just as are muscle spasms cramping up, memory loss, strength loss, mobilty loss and the depression that comes with the TM and the loss of a life as we have known it! As I've said, if anyone has a fool proof suggestion, please post. I'm sure we all would like to know! 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. - Original Message - From: Regina Rummel regina...@sbcglobal.net To: tmic-list@eskimo.com Sent: Tuesday, December 7, 2010 11:57:22 AM Subject: [TMIC] Fatigue Hi everybody, I just read the post I sent this morning and must apologize for it. It's more depressing than I meant it to be. Surely, there is lots we can do to help with fatigue. Seriously, I'm sorry. R
Re: [TMIC] Fatigue Meds
I take none of those meds and experience fatigue. though for me, this may be about going from super to normal as I can no longer drink coffee to rev me up or keep me, nor even tea without care. TM has given me a heightened sensitivity to caffeine. I miss coffee a lot. I missed my at home therapy last week Friday because I woke up at 3:28 pm, sleeping through my 11 am alarm. I had gone to bed at 3 am and heard nothing. 12 hours sleep... while i apologized profusely and the pt was very sympathetic, i was embarrassed and concerned to have lost control on yet another thing in my life. Akua --
Fw: [TMIC] Fatigue Meds
I had the worst fatigue in the begaining, I was sleeping 20 hours a day ( only got up to eat go to the bathroom) for the first 1 years. The next year was a little better, just sleeping 18 hours a day. The follow year sleeping 12 hours a day. The only thing I found to help was time, I know this is not what anyone want to hear. Who takes one day at a time, Todd in CC, TX --- On Tue, 12/7/10, Regina Rummel regina...@sbcglobal.net wrote: From: Regina Rummel regina...@sbcglobal.net Subject: [TMIC] Fatigue Meds To: tmic-list@eskimo.com Date: Tuesday, December 7, 2010, 10:04 AM I live exhausted every day from the moment I wake up to the moment I go to bed. I've tried all the meds my doctors suggested to no use. Came to the conclusion that it makes no sense to subject myself to side effects when pills are useless. Bottom line, we live with the residuals of TM's attack, and fatigue affects us big time. I just take Neurontin even though I doubt it does me any good. If I mention it to my neuro, I can guarantee that she will advise me to triple the dose or more. Your many comments prompted me to add mine. I've accepted fatigue as part of my many other symptoms, but only RELUCTANTLY. Take care. R
RE: [TMIC] Fatigue Meds
I agree with Todd. The fatigue - it is awful. One day at a time. Today all I did was drive 2.5 hrs to a bigger city, and then turned around and attempted to drive home. Fell asleep with my eyes wide open, so I pulled into a Wal Mart parking lot, and slept. One day at a time. Stress = more sleep. Overtired = more sleep. More activity = more sleep. Work = more sleep. One day at a time, sweet Jesus, one day at a time. (That 's a line from a song - hope no one is offended!) Janet From: Todd Tarno [mailto:toddtm2...@sbcglobal.net] Sent: December 7, 2010 12:30 PM To: TMIC Subject: Fw: [TMIC] Fatigue Meds I had the worst fatigue in the begaining, I was sleeping 20 hours a day ( only got up to eat go to the bathroom) for the first 1 years. The next year was a little better, just sleeping 18 hours a day. The follow year sleeping 12 hours a day. The only thing I found to help was time, I know this is not what anyone want to hear. Who takes one day at a time, Todd in CC, TX --- On Tue, 12/7/10, Regina Rummel regina...@sbcglobal.net wrote: From: Regina Rummel regina...@sbcglobal.net Subject: [TMIC] Fatigue Meds To: tmic-list@eskimo.com Date: Tuesday, December 7, 2010, 10:04 AM I live exhausted every day from the moment I wake up to the moment I go to bed. I've tried all the meds my doctors suggested to no use. Came to the conclusion that it makes no sense to subject myself to side effects when pills are useless. Bottom line, we live with the residuals of TM's attack, and fatigue affects us big time. I just take Neurontin even though I doubt it does me any good. If I mention it to my neuro, I can guarantee that she will advise me to triple the dose or more. Your many comments prompted me to add mine. I've accepted fatigue as part of my many other symptoms, but only RELUCTANTLY. Take care. R
Re: [TMIC] Fatigue/Cycle
Janice, Just reading about all that you are doing is making me tired. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com; Akua a...@artfarm.com Sent: Sun, Sep 5, 2010 5:34 am Subject: Re: [TMIC] Fatigue/Cycle I find that getting up around 7:30am, having my coffee and watching the Today show for about an hour and then having a fairly busy morning, fixing lunch for hubby and I, resting for a few hours, fixing dinner for us and a quiet evening then bed at 10:30pm, read for about an hour before sleep pretty well does it for me. Of course, my days get changed some by going to lunch with 2 different groups of friends and another group I go to movies with. Then, my hubby will decide I need to get out of the house and we go ride around for a while - after stopping for a blizzard from DQ - and check out new areas of town. I must say, I really am busy in the mornings with cleaning, ironing, PT exercises, laundry, etc. That pretty well does it for me. I know I am fortunate to be able to walk with a cane and be fairly independent inside of the house. Outside of the house, I use a wheelchair. Janice -- From: Akua a...@artfarm.com Sent: Saturday, September 04, 2010 2:46 PM To: tmic-list@eskimo.com Subject: [TMIC] Fatigue/Cycle If I can stay asleep until 11:30 am and not get up until 1, I am up until 4 am asleep by 5a.m. -- a 17 hour day -- and feel rested. If I have to be up at 8a.m. and dressed by 10 a.m. (I'm paralyzed, it takes time) I am exhausted by 4 p.m. in bed by 10 p.m. and unable to fall asleep until 2 am and exhausted when i have to wake up at 8 am -- a 12 hour day This may be apropos of nada, but I wonder if others find that recasting/reshaping their sleep/wake cycles, grants more energy, buys more time. --
Re: [TMIC] Fatigue/Cycle
Warning to all; Melatonin will absolutely aggravate depression and will wash out anti depression medications. You will not notice it at first but in about a week you will have backed into a cave looking out. Dalton --Original Message-- From: Akua To: tmic-list@eskimo.com Subject: Re: [TMIC] Fatigue/Cycle Sent: Sep 5, 2010 5:32 AM O Linda! Glad you've found a solution! I'm adding melatonin to my list to investigate. Thanks for sharing that! And don't worry worry is a waste of energy. Deep breathe, envision all the fun you will have in learning more, hearing more and being in the presence of those who understand! I so wish i could sit in such caring company! I look forward to hearing about the new insights and new developments. Akua -- Dalton Garis Abu Dhabi +971-050-668-5760
Re: [TMIC] Fatigue/Cycle
I find that getting up around 7:30am, having my coffee and watching the Today show for about an hour and then having a fairly busy morning, fixing lunch for hubby and I, resting for a few hours, fixing dinner for us and a quiet evening then bed at 10:30pm, read for about an hour before sleep pretty well does it for me. Of course, my days get changed some by going to lunch with 2 different groups of friends and another group I go to movies with. Then, my hubby will decide I need to get out of the house and we go ride around for a while - after stopping for a blizzard from DQ - and check out new areas of town.I must say, I really am busy in the mornings with cleaning, ironing, PT exercises, laundry, etc. That pretty well does it for me. I know I am fortunate to be able to walk with a cane and be fairly independent inside of the house. Outside of the house, I use a wheelchair. Janice -- From: Akua a...@artfarm.com Sent: Saturday, September 04, 2010 2:46 PM To: tmic-list@eskimo.com Subject: [TMIC] Fatigue/Cycle If I can stay asleep until 11:30 am and not get up until 1, I am up until 4 am asleep by 5a.m. -- a 17 hour day -- and feel rested. If I have to be up at 8a.m. and dressed by 10 a.m. (I'm paralyzed, it takes time) I am exhausted by 4 p.m. in bed by 10 p.m. and unable to fall asleep until 2 am and exhausted when i have to wake up at 8 am -- a 12 hour day This may be apropos of nada, but I wonder if others find that recasting/reshaping their sleep/wake cycles, grants more energy, buys more time. --
Re: [TMIC] Fatigue/Cycle
With baclofen, I have very little problem with sleep or leg spasms. But, what is melatonin? Janice From: L T CHERPESKI Sent: Saturday, September 04, 2010 6:11 PM To: tmic-list@eskimo.com ; Akua Subject: Re: [TMIC] Fatigue/Cycle Yep, Akua, can totally relate to everything you said. Since TM, I have had such trouble with my sleep, or lack thereof, that I find myself crying at the drop of a hat - Sleeping pills don't work for me. However, many people have told me about their positive experience with Melatonin. Out of sheer desperation, I talked to my pharmacist about it. He reviewed my meds and told me it would be ok to take. After 3 days I actually slept 9 hours, then 8 hours and it's been pretty consistent since. The most I was sleeping before was 3 or 4 hours, wake up and not get back to sleep for another 2 hours and only for an hour if I was lucky - and then it wasn't even a restful sleep. I have to take a nap every day. Basically no quality of life because I was so so tired all the time from not sleeping. I'm all set to go to the Symposium in Dallas and I am already worried about the long air travel, the long days at the Symposium itself and how in the world I will be able to handle all of it. Linda - Original Message - From: Akua To: tmic-list@eskimo.com Sent: Saturday, September 04, 2010 1:46 PM Subject: [TMIC] Fatigue/Cycle If I can stay asleep until 11:30 am and not get up until 1, I am up until 4 am asleep by 5a.m. -- a 17 hour day -- and feel rested. If I have to be up at 8a.m. and dressed by 10 a.m. (I'm paralyzed, it takes time) I am exhausted by 4 p.m. in bed by 10 p.m. and unable to fall asleep until 2 am and exhausted when i have to wake up at 8 am -- a 12 hour day This may be apropos of nada, but I wonder if others find that recasting/reshaping their sleep/wake cycles, grants more energy, buys more time. --
Re: [TMIC] Fatigue/Cycle
Good to know. Janice -- From: Dalton Garis malugss...@gmail.com Sent: Sunday, September 05, 2010 3:54 AM To: Akua a...@artfarm.com; tmic-list@eskimo.com Subject: Re: [TMIC] Fatigue/Cycle Warning to all; Melatonin will absolutely aggravate depression and will wash out anti depression medications. You will not notice it at first but in about a week you will have backed into a cave looking out. Dalton --Original Message-- From: Akua To: tmic-list@eskimo.com Subject: Re: [TMIC] Fatigue/Cycle Sent: Sep 5, 2010 5:32 AM O Linda! Glad you've found a solution! I'm adding melatonin to my list to investigate. Thanks for sharing that! And don't worry worry is a waste of energy. Deep breathe, envision all the fun you will have in learning more, hearing more and being in the presence of those who understand! I so wish i could sit in such caring company! I look forward to hearing about the new insights and new developments. Akua -- Dalton Garis Abu Dhabi +971-050-668-5760
Re: [TMIC] Fatigue/Cycle
Dalton - I'm sorry this happened to you. Do you know others who have had the same reaction? I have not had any reaction and my pharmacist didn't mention it - I didn't see it mentioned when I googled Melatonin either. It's good to know that like any other med it can affect all of us differently. Thanks for the heads up Linda - Original Message - From: Dalton Garismailto:malugss...@gmail.com To: Akuamailto:a...@artfarm.com ; tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Sunday, September 05, 2010 2:54 AM Subject: Re: [TMIC] Fatigue/Cycle Warning to all; Melatonin will absolutely aggravate depression and will wash out anti depression medications. You will not notice it at first but in about a week you will have backed into a cave looking out. Dalton --Original Message-- From: Akua To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Subject: Re: [TMIC] Fatigue/Cycle Sent: Sep 5, 2010 5:32 AM O Linda! Glad you've found a solution! I'm adding melatonin to my list to investigate. Thanks for sharing that! And don't worry worry is a waste of energy. Deep breathe, envision all the fun you will have in learning more, hearing more and being in the presence of those who understand! I so wish i could sit in such caring company! I look forward to hearing about the new insights and new developments. Akua -- Dalton Garis Abu Dhabi +971-050-668-5760
Re: [TMIC] Fatigue/Cycle
It happened years ago and I learned my lesson with the melatonin. I mean, it really works, especially for older persons who have lost this sleep-regulator. But if, like me, you take meds for depression, then you should stay away from it. D. From: L T CHERPESKI cherp...@msn.com Date: Sun, 5 Sep 2010 14:37:37 -0600 To: Dalton Garis malugss...@gmail.com, Akua a...@artfarm.com, tmic-list@eskimo.com Subject: Re: [TMIC] Fatigue/Cycle Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 5 Sep 2010 13:37:21 -0700 Dalton - I'm sorry this happened to you. Do you know others who have had the same reaction? I have not had any reaction and my pharmacist didn't mention it - I didn't see it mentioned when I googled Melatonin either. It's good to know that like any other med it can affect all of us differently. Thanks for the heads up Linda - Original Message - From: Dalton Garis mailto:malugss...@gmail.com To: Akua mailto:a...@artfarm.com ; tmic-list@eskimo.com Sent: Sunday, September 05, 2010 2:54 AM Subject: Re: [TMIC] Fatigue/Cycle Warning to all; Melatonin will absolutely aggravate depression and will wash out anti depression medications. You will not notice it at first but in about a week you will have backed into a cave looking out. Dalton --Original Message-- From: Akua To: tmic-list@eskimo.com Subject: Re: [TMIC] Fatigue/Cycle Sent: Sep 5, 2010 5:32 AM O Linda! Glad you've found a solution! I'm adding melatonin to my list to investigate. Thanks for sharing that! And don't worry worry is a waste of energy. Deep breathe, envision all the fun you will have in learning more, hearing more and being in the presence of those who understand! I so wish i could sit in such caring company! I look forward to hearing about the new insights and new developments. Akua -- Dalton Garis Abu Dhabi +971-050-668-5760
[TMIC] Fatigue/Cycle
If I can stay asleep until 11:30 am and not get up until 1, I am up until 4 am asleep by 5a.m. -- a 17 hour day -- and feel rested. If I have to be up at 8a.m. and dressed by 10 a.m. (I'm paralyzed, it takes time) I am exhausted by 4 p.m. in bed by 10 p.m. and unable to fall asleep until 2 am and exhausted when i have to wake up at 8 am -- a 12 hour day This may be apropos of nada, but I wonder if others find that recasting/reshaping their sleep/wake cycles, grants more energy, buys more time. --
Re: [TMIC] Fatigue/Cycle
Yep, Akua, can totally relate to everything you said. Since TM, I have had such trouble with my sleep, or lack thereof, that I find myself crying at the drop of a hat - Sleeping pills don't work for me. However, many people have told me about their positive experience with Melatonin. Out of sheer desperation, I talked to my pharmacist about it. He reviewed my meds and told me it would be ok to take. After 3 days I actually slept 9 hours, then 8 hours and it's been pretty consistent since. The most I was sleeping before was 3 or 4 hours, wake up and not get back to sleep for another 2 hours and only for an hour if I was lucky - and then it wasn't even a restful sleep. I have to take a nap every day. Basically no quality of life because I was so so tired all the time from not sleeping. I'm all set to go to the Symposium in Dallas and I am already worried about the long air travel, the long days at the Symposium itself and how in the world I will be able to handle all of it. Linda - Original Message - From: Akuamailto:a...@artfarm.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Saturday, September 04, 2010 1:46 PM Subject: [TMIC] Fatigue/Cycle If I can stay asleep until 11:30 am and not get up until 1, I am up until 4 am asleep by 5a.m. -- a 17 hour day -- and feel rested. If I have to be up at 8a.m. and dressed by 10 a.m. (I'm paralyzed, it takes time) I am exhausted by 4 p.m. in bed by 10 p.m. and unable to fall asleep until 2 am and exhausted when i have to wake up at 8 am -- a 12 hour day This may be apropos of nada, but I wonder if others find that recasting/reshaping their sleep/wake cycles, grants more energy, buys more time. --
Re: [TMIC] Fatigue/Cycle
O Linda! Glad you've found a solution! I'm adding melatonin to my list to investigate. Thanks for sharing that! And don't worry worry is a waste of energy. Deep breathe, envision all the fun you will have in learning more, hearing more and being in the presence of those who understand! I so wish i could sit in such caring company! I look forward to hearing about the new insights and new developments. Akua --
Re: [TMIC] Fatigue/Cycle
I hope this information might help others who are having sleep disturbances. If anybody has or is taking Melatonin maybe you could give us your input. Yes, I'm very excited to be in the presence of those who understand. Will be learning and having fun at the same time. Sounds pretty good to me. - Original Message - From: Akuamailto:a...@artfarm.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Saturday, September 04, 2010 7:32 PM Subject: Re: [TMIC] Fatigue/Cycle O Linda! Glad you've found a solution! I'm adding melatonin to my list to investigate. Thanks for sharing that! And don't worry worry is a waste of energy. Deep breathe, envision all the fun you will have in learning more, hearing more and being in the presence of those who understand! I so wish i could sit in such caring company! I look forward to hearing about the new insights and new developments. Akua --
[TMIC] Fatigue
I just read several notes discussing the fatigue some folks have and how using the walkers, canes and such still makes it difficult to get around. I realize that to a lot a people walking is very important, BUT...have any of you thought of getting the small 4 wheeled scooters? They are light, very maneuverable, easy to take apart and get you around so much easier, preserving some of that energy. I've mentioned this because a friend of mine with TM recently bought a little scooter and loves it. She can now make it the distance from the parking lot to the stadium for Angel baseball games. Couldn't have done that before, even with a walker. It has really allowed her to do so much more than 3 months ago. All this is just a thought. BTW, I can still beat her the distance with my wheelchair! Cindy McLeroy
[TMIC] fatigue
It is probably too late to be writing this since my neuro appt. is in the morning but I wanted to ask: has anyone had any type of meds that actually helped with fatigue? I read on this list from several still talking about their fatigue so I know it is a problem with many as it is me. I am still working and, as my Dr. says, I am in limbo (still o.k. enough to work yet having a hard time doing it but not bad enough for disability). Prescriptions I have tried have only been for spacisity and didn't help with fatigue. Any ideas I could present to him? Thanks, Gary in Michigan (hot weather!)
RE: [TMIC] fatigue
I take 100mg provigal 2x daily. Works fairly well but is not a magic potion by any stretch of the word. Larry in Oklahoma where I guess I am fighting a uti, I feel horrible! Larry Throne, MSW From: [EMAIL PROTECTED]To: "TMIC List" tmic-list@eskimo.comSubject: [TMIC] fatigueDate: Sun, 24 Jun 2007 17:17:51 -0400 It is probably too late to be writing this since my neuro appt. is in the morning but I wanted to ask: has anyone had any type of meds that actually helped with fatigue? I read on this list from several still talking about their fatigue so I know it is a problem with many as it is me. I am still working and, as my Dr. says, I am in "limbo" (still o.k. enough to work yet having a hard time doing it but not bad enough for disability). Prescriptions I have tried have only been for spacisity and didn't help with fatigue. Any ideas I could present to him? Thanks, Gary in Michigan (hot weather!) Make every IM count. Download Messenger and join the im Initiative now. Its free.
RE: [TMIC] fatigue
I take 2 B comlex vitamines plus 2 L-Carnitine and 2 Surper Guarana tablets 2X aday. They have helped but the fatigue is always present, expecially after feeling good and then overdo it! It now only takes half the time to recoup - usually a day where before the above it would be 2 or 3 days. I do believe that fatigue is just another symptom of TM. Candy K. -Original Message- From: Larry Throne [EMAIL PROTECTED] Sent: Jun 24, 2007 6:42 PM To: [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] fatigue I take 100mg provigal 2x daily. Works fairly well but is not a magic potion by any stretch of the word. Larry in Oklahoma where I guess I am fighting a uti, I feel horrible! Larry Throne, MSW From: [EMAIL PROTECTED] To: TMIC List tmic-list@eskimo.com Subject: [TMIC] fatigue Date: Sun, 24 Jun 2007 17:17:51 -0400 It is probably too late to be writing this since my neuro appt. is in the morning but I wanted to ask: has anyone had any type of meds that actually helped with fatigue? I read on this list from several still talking about their fatigue so I know it is a problem with many as it is me. I am still working and, as my Dr. says, I am in limbo (still o.k. enough to work yet having a hard time doing it but not bad enough for disability). Prescriptions I have tried have only been for spacisity and didn't help with fatigue. Any ideas I could present to him? Thanks, Gary in Michigan (hot weather!) Make every IM count. Download Messenger and join the im Initiative now. Its free. Candy K.
Re: [TMIC] fatigue
Gary, The thing that was mentioned earlier was L-Carnitine. I've been using it for a few weeks, but it's hard to tell since I've got some other things going on right now (pain) that is keeping me from being very functional. But there have been a few days when I thought it might be helping. I had asked my Pharmacist (he does 'pain management' for my health plan) about it when someone on the TMIC first mentioned it and this is the email he sent me: As you know Amantidine is a drug and L-carnitine is a natural supplement. I prefer Acetyl-L-Carnitine in that it gets into the brain much better than L-carnitine. A good starting dose for Acetyl-L-Carnitine would be 500 mg twice a day 30-40 minutes before meals. It is harmless and will not interact with any meds you are on. Try vitacost.com, I like the Jarrow brand but NSI is ok. Betterlife.com is another cheap place to order name brand supplements from. Also, I personally need extra B vitamins in order to have a reasonable amount of energy (I use Solgar B-Complex, Stress Formula) - but everyone's different. If you're working at all, you're ahead of me! :) Good luck, Sally
[TMIC] fatigue
Title: AOL Email The fatigue is caused by many sequela of the demyelinating of the nerves Hi Frank, I was speaking of fibromyalgia being an immune suppressing disease...must not have been clear enough. What is "sequela"? Sequels?? If so, I thought that TM was mainly known to "hit" us only once. Am I wrong again??? Jude
Re: [TMIC] fatigue
I sure don't know--but I am going to the Symposium---I'll try to find out--You going? Cora in OKla. I noticed that this summer at the 2nd International Rare Neuroimmunolic Symposium there is going to be a session on Fatigue in TM and similar disorders. In the meantime I just wondered if someone can explain it or has any information on it. I take many vitamins and supplements, and they may be helping, but still battle fatigue daily. Thanks, Gary in Michigan
Re: [TMIC] Fatigue
more than one doctor has told me that the fatigue is brought on by the immune deficiency part of the diseases. T.M. is caused by an auto-immune process, where the immune system attacks the spinal cord. To my knowledge there is no immune deficiency associated with this condition. The fatigue is caused by many sequella of the demyelinating of the nerves. hope this helps F
[TMIC] Fatigue/Devic's vent/Frank
Exactly Frank---demyelinization (sp?) is demyelinization. Overactive immune sytem---not immunodeficiency. You know it amazes me whenever I go to some of the Devic's sites---relapsing Devic's having such a poor prognosis---that people truly have no idea of the nature of their disease. There's always all of this talk about immunomodulatory drugs---such as used in straight up MS---that don't work for people like us. Our immune systems are in overdrive, so an attempt at suppression is the route that most neuros take. I will read a post from someone who has just finished their umpteenth course of Solumedrol, with a dash of plasmapharesis thrown in just for good measure, who actually thinks that they've been *cured*. (Wrong, once you've got the NMO autoimmune antibody, it's there to stay, no matter that it may or may not be detectable in the serum test. Also, you can have an extremely low titre and suffer horrific problems, or have qn extremely high titre with no symptoms.) Meanwhile, they're recommendingeliminating necessary *toxic*medications,downing a handful of herbs, doing such and such an exercise (Might that be standing on one's head in a corner whilst juggling bottles of echinacea and munching on root of dandelion?) owning one's feelings, and handingthe whole sorry messover tothe the Higher Power. And oh, the poor women who are actually consiering additional pregnanciesnever mind that 2/3's of us die. IT both saddens, and infuriates me. Meanwhile, here I am, strugglilng to keep myself alive, doing everything that is recommended by the neuro team, and making it on a wing an prayer. Grace---who is feeling extremely digruntled todaymust be the humidity.
Re: [TMIC] fatigue
FATIGUE IS A CONSTANT PROBLEM. I AM ABLE TO DO ALMOST ANYTHING I COULD DO WITH THE EXCEPTION OF SPORTS AND RUNNING. HOWEVER EVERYTHING I DO REQUIRES SO MUCH MORE ENERGY THAT I FATIGUE VERY QUICKLY. I GO TO THE GYM AT LEAST 3X A WEEK AND WORK OUT FIR 90 MINUTES DOING BOTH CARDIO AND WEIGHT EXERCISES. I AM ALWAYS EXHAUSTED AFTERWARDS AND THIS HAS NOT CHANGED IN OVER 8 YEARS. I HAVE FOUND THAT NO MATTER HOW HARD I TRY I CANNOT IMPROVE MY ENDURANCE OR FATIGUE LESS. ROB IN NEW JERSEY PS: THAT IS STILL NO REASON NOT TO EXERCISE. WE STILL HAVE TO KEEP THE WORKING PARTS OF OUR BODY IN GOOD SHAPE.-Original Message-From: Krissy Z [EMAIL PROTECTED]To: TMIC List tmic-list@eskimo.comSent: Mon, 29 May 2006 17:58:32 -0700 (PDT)Subject: Re: [TMIC] fatigue but i thought myelin was our nerve insulator? we have loss of myelin so hence we react to colddidn't think it was fatigue as wellI had fatigue at first but no longer have it, and I take my vitamins and herbal supplements and also my rehab at home exercises. Sure I get stiff and achy in my legs, but the fatigue is no where near what it was if at all.[EMAIL PROTECTED] wrote: I was wondering if someone can explain (in "laymen's" terms) what causes fatigue from TM? I noticed that this summer at the 2nd International Rare Neuroimmunolic Symposium there is going to be a session on Fatigue in TM and similar disorders. In the meantime I just wondered if someone can explain it or has any information on it. I take many vitamins and supplements, and they may be helping, but still battle fatigue daily. Thanks, Gary in MichiganKrissy ZoddaTri State Support Group Leaderhttp://www.geocities.com/tmladyk/home.html~I'm In pretty Good Shape For the Shape I am in~ Do you Yahoo!?Everyone is raving about the all-new Yahoo! Mail Beta.
[TMIC] Fatigue
Title: AOL Email Having had fibromyalgia and CFIDS for so many years before TM, I am used to the overwhelming fatigue. For me, it is nothing new that came with the disease. Over the years, morethan one doctor has told me that the fatigue is brought on by the immune deficiency part of the diseases. The immune system turns on when we are first violated by disease, but in our case, does not turn off the way it normally would when one recovers from being ill. The amount of work involved in fighting disease takes up enormous amounts of energy, and some of our systems are overworked, sometimes to the point of giving in and that's when other viruses, etc take over, taxing our bodies even more to the limit. Does this premise sound like any other that has been voiced over the years on this TM site? Is it medically incorrect? I have always wondered. Any other viewpoints? Peace to you all, Jude
Re: [TMIC] Fatigue
Hello Judy, You have voiced exactly what my own neuros have told me over this last year. Recently at one of the Devic's sites, someone mentioned Provigil as a possibledrug forfighting fatigue. The thing is, with every drug there are side effects. and unless you are willing to bear down and grit your teeth and cope with them, taking the drug is pointless. I personally hate all of the drugs that are necessary for my survival, butwould much rather live with the side effects than the alternative. If my hands tingle---so what, at least I'm still alive. If my hair falls out from the chemo---I'll wear a doo-rag. It's a trade off that one has to be willing to accept. Like you, my fatigue is overwhelming---but thus far I haven't found a solution. Maybe someday. Grace On 5/30/06, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: Having had fibromyalgia and CFIDS for so many years before TM, I am used to the overwhelming fatigue. For me, it is nothing new that came with the disease. Over the years, morethan one doctor has told me that the fatigue is brought on by the immune deficiency part of the diseases. The immune system turns on when we are first violated by disease, but in our case, does not turn off the way it normally would when one recovers from being ill. The amount of work involved in fighting disease takes up enormous amounts of energy, and some of our systems are overworked, sometimes to the point of giving in and that's when other viruses, etc take over, taxing our bodies even more to the limit. Does this premise sound like any other that has been voiced over the years on this TM site? Is it medically incorrect? I have always wondered. Any other viewpoints? Peace to you all, Jude
[TMIC] fatigue
I was wondering if someone can explain (in "laymen's" terms) what causes fatigue from TM? I noticed that this summer at the 2nd International Rare Neuroimmunolic Symposium there is going to be a session on Fatigue in TM and similar disorders. In the meantime I just wondered if someone can explain it or has any information on it. I take many vitamins and supplements, and they may be helping, but still battle fatigue daily. Thanks, Gary in Michigan
Re: [TMIC] fatigue
An explanation in an MS book (recommended for TM people to refer to for exercises) talked about the missing myelin which made nerve transmission slower, which therefore required more energy (since the myelin on the nerves makes nerve transmission more efficient). Although I'm not sure if in TM the myelin has actually deteriorated, or if it's just damaged, my assumption would be that it would similarly affect the efficiency of nerve transmission, which would also affect how much (extra) energy would be required to do simple tasks, and therefore cause fatigue. To me, this is one of the most frustrating things about TM, b/c when you get a bit better, and can walk a little, people think that means you're healed and should be back to work. They can't 'see' how much energy it takes you to do simple tasks, norunderstand that by the time I got myself up and ready for work, I'd have to lay down and rest from the exertion of getting ready- to say nothing of if I actually worked for a few hours! :) Oh well - at least we understand each other, which is one of the great things about TMIC! Sally
Re: [TMIC] fatigue
but i thought myelin was our nerve insulator? we have loss of myelin so hence we react to colddidn't think it was fatigue as wellI had fatigue at first but no longer have it, and I take my vitamins and herbal supplements and also my rehab at home exercises. Sure I get stiff and achy in my legs, but the fatigue is no where near what it was if at all.[EMAIL PROTECTED] wrote: I was wondering if someone can explain (in "laymen's" terms) what causes fatigue from TM? I noticed that this summer at the 2nd International Rare Neuroimmunolic Symposium there is going to be a session on Fatigue in TM and similar disorders. In the meantime I just wondered if someone can explain it or has any information on it. I take many vitamins and supplements, and they may be helping, but still battle fatigue daily. Thanks, Gary in MichiganKrissy ZoddaTri State Support Group Leaderhttp://www.geocities.com/tmladyk/home.html~I'm In pretty Good Shape For the Shape I am in~ Do you Yahoo!? Everyone is raving about the all-new Yahoo! Mail Beta.
