AnonymousJune 1, 2006 at 3:06 pm
Hello “Post GBS’ers”
As there are many of us “Post GBS’ers” and due to that I’m so curious of what have been said to you by the doctors, if any medications had helped, or other alternative stuff have helped – at least a bit – I wanted to start this thread.
I’m + 20 years Post GBS and after I got pregnant 4 years ago with my second child I have gone into this foggy world. I’m tired, exhausted and dizzie and have different types of pain. I have always at least one type of pain sometimes less sometimes more. When it’s worse it knocks me out completly. I have to put a great effort in every little thing a do and I have to plan my moves a lot. I have tryed to work but it’s impossible. Nowadays I’m staying at home, doing yoga/meditation/massage or short walks and I try not to overdo anything… ( I’m well examined and as the neurologist said : I don’t have any neurologic illness in progress…)
The fact is that most part of us have to deal with extreme fatigue and different kind of pains sometimes depression etc and all this without no diagnos and sometimes even with nonunderstanding doctors/other people around…
The last thing I was told by a doctor is that is that many of “Post GBS’ers” have like Fibromyalgic symptoms or Chronic Fatigue symptoms and sometimes they are diagnosed that even if it maybe wasn’t all correct. And as he sad if you have the right pain treatment and if that only cuts of 10% it has probably helped you a bit as the pain steels a lot of energy.
I can just speak for myself and say that a low dose of amitriptylin(?) has helped me a bit. I also want to try neurontin but I haven’t been prescriped that yet.
I have lately read many books where doctors or patients give there point of view of Fibromyalgia and Chronic Fatigue or what a some doctors call them -neurosomatic illnesses. What many mentiones for example is that the body is stressed by the symptoms so it’s relieving with yoga or other excercises to relax the body, and due to that the body is so stressed it is important with eating proper food and a high dose of vitamines and minerals (the list of them are practically the same…it it so long – but if anyone are interested I’ll write it).
My GP hasn’t got any interest in sending me to an expert of those illnesses as she doesn’t really believe in it. But she has sent me to a pain rehabcenter which there a lot of these patients and very good doctors. It’s going to be interesting…
Have any of you being diagnosed with Fibromyalgia or Chronic Fatigue?
Have anyone taken any suplement of vitamines or minerals and has it helped if just for a bit?
Or maybe you just want to tell your story and share what has/hasn’t helped you …
AnonymousJune 1, 2006 at 4:35 pm
This theme seems to be very prevalent with the last few threads I have read. I took amitryptiline for about 3 years and just this past two weeks have stopped. I’m also cutting back on Paxil. I am just about losing it… mentally and physically. This dog catcher in the neighborhood didn’t know what to think of me yesterday as I was bawling over this stray dog.
I go to my doctor Monday and plan on talking to him about some of the new meds, particulary Cymbalta. Oh, and Neurontin didn’t do much for me. Maybe I’ll end up back on the amitryptline?!? I don’t know… I am so confused today and my body hurts. Ugh.
Oh, back to your question – I was diagnosed about 7 years ago with Chronic Fatigue Syndrome and then I changed doctors. I found out for insurance that this is not a good diagnosis to have – I think you get black listed?!?!
Too tired now for more, but I will check back next week.
AnonymousJune 1, 2006 at 8:29 pm
As you once said to me, we mirror each others lives in so many ways. You may have read my post about what the Rheumatologist said, and I was thinking whether there was any possibility of you getting an appointment with one. I am lucky because I dont actually need a referral from my doctor to go and see a specialist. The Rheum. said that I did show symptoms of Fibromyalgia, and he said it was similar to all the other “post” illnesses out there. I mean, who knows if that is all true, just the fact that he was willing to listen and seemed to believe me was a huge thing .
If you would like to send me your phone number via p.m., I can call you some time.
AnonymousJune 3, 2006 at 5:27 am
It was really nice to hear from you.
When I had GBS there was no IVIG treatment. My dad has a friend who had GBS and he was in a coma for 6 months. He had IVIG treatments and now after 2 years he’s like a newborn baby and doesn’t have any residuals. He’s managing his own gasstation and has a lot of energy to do hobbies like golf for example. It just make me wonder if GBS’ers who have had IVIG treatment has less residuals than others…
For a year ago I took amantadinhydroklorid to see if my extreme fatigue got away. I had to stop taking them as I got a lot worse. I wonder if they have helped anyone with GBS. I heard that they can help some of those have MS. Sometimes I’ve felt like a guinea-pig of a laboratory – so many tests and new medicatione who has been taken during all these years…
I really hope you feel better today.
Why did you stop taking amitryptiline? Did you get use to them so they didn’t work after three years? I hope you’ll be able to get some help on monday. Well now I know why I haven’t lost any weight. Since I haven’t been so active nowadays I have put on weight and after a unusually very long and cold Swedish winter even more. In January I started to take amitryptiline, it gave me some energy and I wasn’t terrible foggy anymore – maybe due to that I slept better. I have been eating very healthy since then (most of the times..) to see if I got some more energy and I have wondered why I haven’t lost any weight. Well at least I’m a bit better in the bowels ( i’ve got IBS).
You wrote about Paxil – what is that? Was it a long time ago you had GBS?
I was so glad to hear that you felt better since visiting the Rheumatologist. I think you have so right in say “just the fact that he was willing to listen and seemed to believe me was a huge thing”. I remener last year when I had my first visit to see my new neurologist. He was a warm, interested person who wanted to listen to me, who had all time in the world for me and he understood everything I sad. This was so unknown to me and it all was so overwhelming and I started to cry… (Six months later when he had finished examened me he threw me back to my GP with a letter and a prescription…) I read that you had been prescriped Cymbalta. What is that? It is something new? I really hope it will help you.
I’m going to a Rehabilitationcenter for pain 13th of June to see what can be done – and I hope I can get some help there. They have had many patients with Fibromyalgia/ Chronic Fatigue Syndrome/ and other people with syptoms of pain and tiredness. I have been talking to a nurse and a doctor and they was horrified when they heard that my GP said that she didn’t know what to do me anymore and that our contact nowadays was she sending me doctors’ certificate of me being still ill and prescriptions.
AnonymousJune 3, 2006 at 10:41 am
I stopped amitryptiline recently to get ready to change to some new med. I’ve cut back on Paxil – which is a seratonine type antidepressant – and that is really, really messing with my mind and everything. Last night was horrible:( I did have a few beers and kept waking up every hour with my feet and calves hurting. I believe that is from not taking the amitryptiline. I’m counting the hours until I make it to my doctor on Monday. Oh but first, I have to go back to my dentist Monday morning for a tooth he fixed a few weeks ago and it is hurting. Major drag. I know I am gritting my teeth some and my jaw really hurts. I have been extremely busy at work the past two weeks and feel I have hit bottom. My boss encouraged me to take Monday and Tuesday off (even though she doesn’t understand and has no sympathy) but she doesn’t want me crying at work. I hope to report next week good news.
I got a ‘mild’ case in Feb. of 1997 and have dealt with neuropathy pain and major fatigue ever since.
AnonymousJune 3, 2006 at 6:45 pm
All our symptoms do mirror each other. Today i found it hard to get out of bed cause I had did 15 min of exercises last night. My PT told me to take it easy because of my fatigue and my muscles dont regenerate as fast as a “normal” person. I do have major pains at times I take Tizanidine(zanaflex) and that helps alot. I was on nuerontin but it made me do some strange things and I didnt quite feel right. I had a set back last week and was in the hospital, but thank goodness I am home. I have alot of help since I returned home. I recently got married and he helps alot. Also my mother in law comes over. The one thing i have a question about is the fact I stay cold. Does anyone have this problem?????
AnonymousJune 4, 2006 at 9:20 am
some stay hot, some stay cold [some like it in the pot 3 days old – lol]. our damaged nerves make each of us unique in how we dispaly our gbs problems. resting is extremely important is gbs recovery. over doing it will slo the recovery process. in reality it is the nerves that need the rest, not the muscles. but since the nerves make the muscles work… take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJune 6, 2006 at 12:17 pm
Crissy, I do also think the pain was from not taking Amitryptiline. I once forgott the med at home when I stayed at my mothers place a couple of days and the pain was increasing every day. Good luck tomorrow!
Hottie, I can just agree with Gene. He is such a wise guy!
I’m cold all the time since I had GBS and it’s not better living here in northern Scandinavia. The cold makes you’re pain increase a lot when the muscles and you’re hole body stiffens up. The last year I have started my days (when I can…) with a energetic whole-body sesamoil massage (an ayurvedic version) before showering/taking a warm bath. First it’s smoothering all your muscles and it makes your warm. If you keep a light cap of it to stay it also helps you keep warm during the day. It is a ancient health thing for reumatics. For me it helps a lot.
Gene as I saw that you lives in southern California… I suppose you’re not very often cold by the temperature…
AnonymousJune 6, 2006 at 1:08 pm
I suppose I did make a mistake in stopping the amitryptiline – I do so because on the info. I read on Cymblata, it said not to take if you were taking this. Anyway, I went to my dr. yesterday and cried my eyes out. He was also my Dad’s doctor… remember my Dad died in February and our family is pursuing a law suit against the hospital. My Dr. (and my Dad’s) doesn’t go to the hospital anymore now that they have ‘hospital doctors’ so this doctor didn’t do anything wrong.
I had a temp of 100.3 and mine normally runs low. He said stress/depression can give you a fever. He started me on Cymbalta – he lit up and said ‘yes this medicine would be great for you.’ He wanted me back on the amitrytpline and no more Paxil. He is having me take the Cymbalta (30 mg.) at night. So I had a better night last night even though I was awake half the night, but I wasn’t in pain. I’m off work again today and I asked for tomorrow off. Also, I went back to the dentist yesterday as a tooth he had recently filled wasn’t right and my jaw and tooth were hurting. He changed my bite and it feels better… although it is cracked so next month I get a crown on it.
I feel like I can see the light at the end of the tunnell. I’ve had diahrea for days and headaches too, but I feel so much better today and I don’t plan on doing anything but watering outside and napping.
AnonymousJune 6, 2006 at 8:45 pm
Bless your heart…being a mom alone can make you chronically tired!!!!
I am going in remission from CIDP. I’d like to say I’m healed and this will never come back, but I’ve been reading a lot of this website and it looks like I better be careful.
I was dignosed with chronic fatigue 18 years before I cane down with CIDP. I think it’s a precurser to many diseases.
I take anitryptline for migraines…it helps a lot. I dont’ feel depressed, but I’m better than I’ve been in four years.
Try B12 shots to help with fatigue. Try resting a inbetween activities. I start dinner early adn warn up when everyon’es home. My best part of the day is 8:00a.m. until,3:00 p.m. Then it’s all down hill.
Exercise will also make a huge differnce in how you feel overall.
Hang in there!!!!!!!!!!!!!!:o
AnonymousJune 7, 2006 at 12:21 am
maybe we should switch homes. yes, it is warm here but that is what does me in. in the summer [just starting] i do my chores in the early morning hours cuz by noon, the latest, the heat has driven me to doing nothing. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJune 8, 2006 at 2:07 am
Could someone explane to me about B12 shots. I talked to my GP about B12 but she didn’t want to discuss the subject as my leves were OK. I have read a little about them but not so much. Is it that you take an “overdose” of those for a treatment in a short period or what?
And yes Gene switch homes seemes like a great idea. It’s the beginning of the summer here in Scandinavia as well – it’s just that they are quite chilly. The lasts days have been horrible with rain, storm and freezing cold. As it should be summer people dress like that but I’m dressed up for winter. Yesterday my daughter was singing cristmas songs!!! and tomorrow her summerholiday begins.
AnonymousJune 8, 2006 at 4:05 pm
My personal experience is that about 25 years post GBS, severe muscle cramps and pain, and fatigue gradually impacted my work, ability to walk, and the ADLs of living. Neurontin and/or motrin helps. Sessions with a pain specialist, yoga, water exercise and learning how to pace myself all helped. I find that the pain and cramps return when I overexert the muscles, and this is very easy to do. As I didn’t have treatment (nonexistent at the time) other than preserving my life in ICU with about 3-4 months of hospitalization, I was discharged without therapy in a complete paralytic condition. Gradually, my ability to stand, walk and return to a normal life returned. However, the residual damage for me was weaker muscles, cramps that would contort my feet, and a strange vibrating sensation running up and down my arms, legs and spine, particularly when over fatigued. My eyes were effected and double vision and print that fades off the page when fatigued is just something I now live with. For people newly infected with GBS today, treatments prevent the same level of damage and promotes quicker recoveries than what was possible in the early 70’s and 80’s. People contracting GBS today are given rehabilitatioin and presumed to be capable of returning to their pre-illness states. The running/vibrating sensations are irritating and combined with pain, wears me down. Rest and pacing is the only way around this. Dr Richard Bruno of the Post-Polio Institute has great ideas for dealing with this type of post-illness challenge, including dietary adjustments such as eating 5 times a day, small protein bursts. He faxed me his dietary suggestions and they are super easy to prepare and this philosophy really works. Best wishes.
AnonymousJune 8, 2006 at 4:16 pm
My personal experience is that about 25 years post GBS, severe muscle cramps and pain, and fatigue gradually impacted my work, ability to walk, and the ADLs of living. I’m now 33 years post GBS. Neurontin and/or motrin helps. Sessions with a pain specialist, yoga, water exercise and learning how to pace myself all helped minimize the need for drugs and improve my quality of life. I find that the pain and cramps return when I overexert the muscles, and this is very easy to do. As in 1971 I didn’t have treatment (nonexistent at the time) other than preserving my life in ICU with about 3-4 months of hospitalization, I was discharged without therapy in a complete paralytic sack of potatoes condition. Gradually, my ability to stand, walk and return to a normal life returned. However, the residual damage for me was weaker muscles, cramps that would contort my feet for an hour or more at a time, and a strange vibrating sensation running up and down my arms, legs and spine, when overly fatigued. Back pain from muscle spasms is another challenge. Double vision and print that fades off the page when my eyes are overused, is just something I live with. The running/vibrating sensations are irritating and combined with pain, wear me down, but resting and pacing better works, and then neurontin can be added, and motrin (in this order) if nothing else is working. Massage has been a tricky option as it can overfatigue the muscles and can easily cause spasms if the therapist isn’t gentle enough for my crazy muscles. Chiropractic adjustments minimize pain levels.
For people newly infected with GBS today, treatments prevent severe damage and promote quicker recoveries than what was possible in the early 70’s and 80’s, so please don’t stress out if you are reading this, thinking it might affect you this way. People contracting GBS today are also given rehabilitation therapy by OTs and PTs, which is additionally helpful.
Dr Richard Bruno of the Post-Polio Institute has great ideas for dealing with this type of post-illness challenge, including dietary adjustments such as eating 5 times a day in small protein bursts. He faxed me his dietary suggestions and they are super easy to prepare and this philosophy really works. Best wishes.
AnonymousJune 9, 2006 at 2:50 am
Yesterday I talked to my GP. It seems like if I haven’t improved after the Pain Rehabilitation Program (which last six months and I start next week) she will report that to the Social Insurance Office which probably will lead me to be a sickness retired. I’m not so sure what to think about that…it seems so final…and an important economical loss. I should be in my prime time! Has anyone recovered from “Post GBS Syndomes” or is it going to be worse? I have thought about that a lot.
Thank you for sharing your GBS history. It is always so interesting to hear about other experiences especially when we all are more or less in the same situation.
The dietary suggestions you wrote about sounds very interesting. I think the food is so important as it is from there we’re get our “fuel”. I have during the years experimented with food. Small portions more often is helping me out – and healthy energetic food. It can be complicated though when you’re fatigue. I’m quite curious about the content in the suggestions. Is it maybe possible for you to attach it here on the board or maybe you could send it to me in an e-mail?
AnonymousJune 9, 2006 at 1:30 pm
assuming it is post gbs & not your residuals acting up, i think not much is known abt it. if you show any signs of getting worse, ask your gp abt getting an emg/ncv & then possibly ivig after that. from my limited knowledge it’s a shot in the dark, but better than doing nothing. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJune 15, 2006 at 12:13 am
Like Gene says, if symptoms reappear, see your doctor for medical advice. Here is a link to New Mobility magazine and an article they ran on the protein diet. I think it explains the ideas behind the diet well, though this article focuses specifically on the symptoms of post-polio syndrome. Dr. Bruno writes for New Mobility, so it might be possible to get in touch with him through the magazine’s site. I do recommend this magazine as a great resource for many of the issues GBS patients often deal with.
AnonymousJune 16, 2006 at 1:09 am
In Sweden a hospital have recently publicated a study where they have been treated post-polio syndrom with immunoglobulin with good results. Is that that IVIG? Sometimes I mix it all up.
Gene, I have had a full research last year with lumbla punctual, EMG etc. It showed nothing. I know I have been talking about residuals as I think in away it is but I have self diagnosed my self to Post GBS Syndrome…
I thought that IVIG was given in acute GBS, is it given as a treatment decades after too?
About summer and heat. I met people in a Rehab center who had MS and they had bought special vests and caps to cool them down (from US) so they didn’t have to suffer from the heat so much…
I have now spent some spent some days in a Pain Rehab Center but unfortunately they thought I was to weak and fatigue to enter the 6 months program for now. I was prescribed Lyrica though to try for 3 months.
Thank you Linda for the Link.
AnonymousJune 16, 2006 at 8:04 am
yes, ivig is immunoglobulin. for residuals acting up you need much rest lying down. ivig is only effective if any bad gbs antibodies are in your blood. therefore, unless you have cidp [chronic gbs] or recurring gbs, it will not help residuals. thx for MS cool down tips. neurontin is safer than lyrica & should be taken over lyrica. [url]http://www.gbs-cidp.org/forums/showthread.php?t=181&highlight=rebuild[/url]
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJune 16, 2006 at 1:11 pm
Thank-you for the [U]excellent[/U] link to the Post- Polio diet info. 🙂
As someone who was dx’d in 2000, and received both IVIG and many sessions of plasmapheresis though, I would like to say that receiving treatments in no way is an absolute of stopping the damage that GBS can do. The treatment is given in hopes of slowing down the progression of the illness, and in hopes that it will shorten the recovery time needed and length of time before a GBS patient walks again. Even after initially showing improvement after receiving PE I had a full and total relapse and was back to square one, totally paralyzed again head to toe. Many of us, (myself included )who received treatment early after our diagnosis have been left with permanent disability and residuals due to our GBS……even with treatment I spent six months in hospital and it was a full five months before my legs moved at all. [U]Thank God [/U]we have treatment but it is most definately not a cure.
best wishes to all,
AnonymousJune 30, 2006 at 11:18 pm
Before I got GBS I was diagonosed with Fibromyalgia big time. Actually I had Fibromyalgia and a problem in my neck that needed 2 operations, a metal piece seated with 10 screws in order for my headaches to stop.
Since I got GBS in 2000, I have been struggling with that pain that you have described. I have been on so many different medications just trying to keep me sane. My neurologist, a dork, decided that I should go to a pain clinic. To make a long story short, it was the best thing that I could have done.
My pain doctor read over all the places and things that were tried and decided to ask me what worked the best. Vicodine ES 4 times a day maximin. I didn’t want to get hooked, but I really needed something to STOP this consuming pain and major discomfort.
She decided to see how it would work. Now for the last 6 months, and changing to Cymbalta, I have relief. I try to use the Vicodine only when I need it; and, since I went on Cymbalta, I have been able to reduce 5 days of pills that I would have used. That’s 20 tablets. It doesn’t sound like much, but when your day is just watching the clock to see when you can have relief of pain with Vicodine, I think I am doing quite well.
I have done more projects in the last 6 months than the last 3 years. I still suffer from doing too much, but at least I can do too much.
This may not be for everybody, but I listened to my body and put the pieces together by watching my medications and what I thought I needed. There are still some bad days, but not as many. Thank heaven.
AnonymousSeptember 1, 2006 at 8:29 am
Better late than never… I have been busy with having the children (4 & 8 years old) at home in a what it seemed a never ending summerholiday. Of course I love them and they give me a lot of joy but it has been rather tough. As for all of you mothers or fathers I can guess.
Interesting what you said about the pain clinic and Cymbalta. I have just been contacted by the pain clinic. They have arranged a program for fatigue persons in October which I’ve been signed up for. I mentioned Cymbalta for them, first they didn’t know about it and later they phoned to tell that it was for depression. I told them about what I ‘ve heard about it (on the Forum)…Well I just have to wait and see until I go there.
One interesting thing (for me) is that my GP have changed my diagnos from about “not having a clue what she have” to Status: Post GBS Syndrome with Fibromyalgi character. I can say that it helps with the contact with the social insurance office and my work.
AnonymousSeptember 3, 2006 at 1:24 am
Actually my Psychiatrist suggested the Cybalta for pain, and it is also advertised over the TV in De Pere, WI. The advertising started about a month ago. It says something like — now there is an antidepressant that can take care of two problems …. and uses two big words and then explains what the two words mean. My memory can’t remember anything over 3 syllables. Those words are 5 syllables.
My psychiatrist said 60 mg is good for antidepressant, but the company has been working with 90 mg to help with pain. They don’t mention the amount needed for relief of pain on TV though.
I have tried it at 60mg after I was at 90mg and I definately did notice the difference. When I told my doctor at the pain clinic he kind of agreed with me but wrote down a note about Cymbalta. I’m suprised that the company that makes Cymbalta doesn’t let the pain clinic know about this advantage of using their product.
I don’t know how you can handle two children with GBS. I give you great credit trying to keep up with them and still having your own problems.
Good Luck with your doctor; and it he doesn’t understand, tell him that the Cymbalta is manufactured by LILLY.
Best of luck, Judy
AnonymousSeptember 3, 2006 at 12:50 pm
Im so glad that FINALLY your GP changed your diagnosis! Its been such a long time coming. Marge started a thread in the Main Forum called Post Polio Syndrome which I think you may find very interesting. It does say that Provigil didnt seem to make much difference in the trials, however, Suzanne and myself have definitely found it does help with our fatigue, but the first week is difficult because it had a few side effects.
Also, Judy mentioned Cymbalta. I know we’ve discussed this before with you in the Cymbalta thead, but you should give it a try.
[B]Judy, I am[/B] so glad you brought this up, because I am only on 20mg, which I didnt think did anything from me, so I stopped, and BOY did I notice a difference. Your post has made me realize I really should ask my doc to up my dose because I’m going through a bad phase at the moment. Thanks for bringing that up!
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