I think you will find the “trick” is to find the balance of the right dosage and interval that works best for you. Right now, I’m on a relatively low dosage every two weeks. It seems to have slowed the progression. Each of us is different so it may take a little experimenting to find the right balance that is best for you.

Has your husband read the brochure that the foundation put out on CIDP? It’s hard for someone who doesn’t know what is going on to understand what someone with CIDP is experiencing. I know in my case, communication has been the key in helping Carolyn have some appreciation of what my limitations are [it has gotten me out of doing the dishes after supper :), but I still have to cut the grass 🙁 (but now I have a ridding lawn mower 😀 ) ]

I hope this helps. Others will probably be able to give you a additional advise.

I was like you. Have a horrible day and you start thinking the worst it’s just natural. My Neuroligist when I first started told me some days a truck will run over you, She was right. One day is awful but latter it gets better.She says Doctors don’t understand why. I to had shortness with my wife,grumpy anxious and other issues. My Doc gave me Lexapor and I bite one in half everyday and now am doing much better. The bad news is with time you learn the hard way what works better and what to expect. This stuff is not easy and can be very difficult on family members. Ask for help.

Answers to your questions:

The “bad” cells start attacking your immune system before you start feeling symptoms.

I would personally recommend getting IVIG before you start to feel the symptoms. I would not wait! If you are going 18 days between infusions, before symptoms return, I would ask to get IVIG every 2 weeks. That way you are getting another dose before your body starts attacking itself.

How much IVIG do you get a month? The standard dosing is 2 grams per kg for a loading dose & 1 gram per kg for a maintenance. If you do a forum search I’m sure you will find MANY posts about figuring out how much IVIG you should be receiving.

There is some research that suggests it’s not just the amount of IVIG you get but the frequency. So if you were getting 40 grams every 4 weeks (over 2 days) it might be more beneficial to get 20 grams every 2 weeks. (But, I think, 40 grams a month is quite a bit less than what you should be getting)

Anxiety & depression go hand in hand with chronic illnesses. There is no shame in seeking out meds to help you get through this time. I would highly recommend seeing a psychiatrist to prescribe them though. I have a friend, who works in a mental health hospital, & she has seen many people come in who have been prescribed meds by their primary dr’s & the meds are not prescribed correctly. Her & I just had a lengthy conversation about this issue & she has convinced me that a psychiatrist is the only dr that should be prescribing anxiety and/or depression meds.

As far as your husband, you need to be honest with him. I think it might be a good idea to see a marriage counselor or therapist. It is difficult for someone who doesn’t have a chronic illness to understand what it is like. I think it’s a good idea to bring in an unbiased 3rd party to help you two talk through your issues. I’m sure it’s not easy for him to watch you being in pain. And I’m sure it’s not easy for you to be in pain & then to feel like you have to hide it from him. I’ve been married for 10 years & have been with my husband for 19 years. While things haven’t always been rainbows & sunshine, I have learned that communication is key. You have got to talk & really listen to each other. You owe it to your marriage!

Kelly

Now that you have the pacemaker is your heart rate faster?

If it is I would ask for IVIG, even if it is slow you can get it over a couple of days.

If you over do it you will be in more pain, you need to listen to your body and get plenty of rest.

As far as pain I need to take Gabapentin to keep the pain under control.

Warm packs help me but don’t work for everyone.

Take care

Rhonda

HELLO AND WELCOME!

I too have CIDP/Anti-Mag and I have been getting IVIG treatments since ’09, I had a wonderful dr. and I trusted her advice totally. Then, my group insurance changed and I had to change dr.’s….next dr. was a ditz….big mistake, after 6 mths of dr. bozo I found dr. #3. Wonderful man, total trust in him.
I have had my treatments at a hospital (most expensive for insurance to pay)
I have had them at an infusion center (next less expensive)
and now I may be getting a port inserted (don’t know that yet) but I will be getting them at home (least expensive-most comfortable). I have been very fortunate to have wonderful insurance.
You are on a long journey now and you came to the right place to get an education and plenty of support. It is vital you have good communications with your Dr.. If you trust her and she really know’s about this disease(so many Dr.’s don’t) please, try to start over on another foot and listen to her suggestions! Find out all you need to know about your disease and then your dr. and you can work as a team..I take Zonisamide 100mg 2x for nerve pain, Trazodone 100mg 1xp.m. Cymbalta-60mg,2x..when my insurance co. stopped my treatments once I ended up on Morphine at night and Vicodine at day….no more since treatments resumed..

God Bless’
Miss Judy

Gabriel100,

How far apart are your plasma exchanges? Are you doing anything else, steroids or immunosuppressants, as treatment? In many people, plasma exchange needs to be done frequently (every other week or so) to be effective and to level out the highs and lows.

Your relationship with your neurologist seems to be strained. While your diagnosis is likely sound, asking for a referral for a second opinion is still worthwhile and may be a way to find a neurologist more suited to you. If not, you need to discuss your relationship with your neurologist. It will be undoubtedly awkward, but you must get answers to your questions. You are the one responsible for your health, not your doctor. If your health care system has an ombudsman, ask for his/her help.

Godspeed in finding a truly helpful treatment,
MarkEns

Gabriel,
It sounds like you need a new neuro. I finally got the right one because I got myself into the hospital to find out what was wrong with me to begin with. He is my 3rd (technically #2 was the hosp neuro) but the most knowledgeable one in our area (Tampa Bay, FL). Don’t be afraid to ask for a 2nd opinion, most insurances approve this. Ask here for folks to recommend a doc if they live near you. If not, some will have heard of good ones too. I am newly dx as of Dec 2010 and have just had my 3rd IVIg treatment. Am somewhat better but it’s up and down daily. Hope you do well with your treatment.
God bless
Wendy 🙂

It’s cheaper to get a good sense of other docs and also might either get you a diagnosis or save your life.
Gabriel, getting PP or IVIG doesn’t mean you can simply jump back into life as it was before? You’ve had damages to your nerves and body, and it’d be wisest to go slowly to re-establish strength and equilibrium. With this stuff, slow and steady building [or rebuilding] up of strength IS a key to success.
If it’s just your feet for now? BRAVO! Count your blessings! Why? Because it’s hit others far far worse. Swallowing is the difficult one that needs to be fixed first tho! Somehow? It’s needed and also useful.
As for finding a balance in terms of what you can do or not? Be very careful and learn to listen to what your body is trying to tell you.
As to maintaining sanity throughout it all? Learn about body awarness techniques and about chronic illness coping skills. They can help you thru the worst of it all to a degree.
Fight hard to wallk, and to be able to walk without teetering, if you can! It’s the key door to keep open to independance. Hope this helps!

I spent two years in limbo going back and forth to appointments to see a neuro who had a good personality but could not find the reason for my problem. I was so frustrated!!! I was finally referred to my current neuro who was very aggressive in finding the cause and diagnosing me quickly. It really pays to get another opinion. During the two years seeing the first neuro I thought that I was going crazy, but when I was finally diagnosed by the second one I felt validated and thankful.

My thoughts are with you.

[B]I would strongly suggest that you get a new Neuro, apparently the Dr you have now is not very good with GBS/CIDP patients, actually sounds like alot of the problems you’re having other patients have experienced with their Neuros also. You cannot believe how many Drs have never treated GBS/ CIDP in their lifetime. Try someone else, it is detriment to you physical health and your emotional health.[/B]

Hi Istaroaz,
I read this abstract that seems to apply to you. It is about an ataxic form of GBS.
Laurel
Journal of Neurology, Neurosurgery, and Psychiatry 2000;69:136-137; doi:10.1136/jnnp.69.1.136
Copyright © 2000 by the BMJ Publishing Group Ltd.
J Neurol Neurosurg Psychiatry 2000;69:136-137 ( July )
Letters to the editor
Ataxic form of Guillain-Barré syndrome associated with anti-GD1b IgG antibody
The first 150 words of the full text of this article appear below.

Richter1 proposed an ataxic variant of Guillain-Barré syndrome, in which patients have severe ataxia of the cerebellar type at the onset of Guillain-Barré syndrome but no ophthalmoplegia or severe loss of proprioceptive sense. Patients with ataxic Guillain-Barré syndrome have distal paraesthesias, areflexia, and raised CSF protein concentrations. Kusunoki et al2 reported that of 149 patients who had anti-GQ1b IgG antibodies without profound weakness, five had acute self limited ataxia without ophthalmoplegia. The nosology of these patients, however, was not discussed. Of our 340 consecutive patients who had anti-GQ1b IgG, six had no external ophthalmoplegia and one had minimal external ophthalmoplegia. The clinical features of these seven anti-GQ1b-positive patients were consistent with an “ataxic form of Guillain-Barré syndrome” (Yuki et al, unpublished observations). Tentative diagnoses made by the primary physicians were Guillain-Barré syndrome (n=3), atypical Miller Fisher syndrome (n=3), and acute cerebellar ataxia (n=1).

Well,
That is a touchy subject. Kevin was originally dx w/gbs, whe symptoms recurred, we waited it out and did the rest thing thinking it was residuals, which are kind of like a flare up. We did this for about 6 months and finally used a repeat ncv/emg to measure any differences and in fact it was cidp. So I guess if you think it is a relapse, it could in fact be cidp. There is recurring gbs, but I do not believe it is common? I guess the only diagnostic tool would be the ncv/emg comparison??? Not sure???? Trying to figure out the difference between residual gbs and cidp is so hard, I pray for you so that you are strong.
Dawn

I wondered the same thing.. In november they (the doctors told me) you have gbs, and it’ll never come back.. Well they were sorta right, now its come back, but they call it cidp! For you my friend…stress bad, rest good, keep happy thoughts, don’t overdo it, and if you think you are relapsing, seek medical attention… What is the current status for you? deanop

My dr kind of explained that if you have a couple relapses its reoccuring GBS but after 3 they tend to call it CIDP. I know that doesn’t sound very technical but thats it was explained to me. I had 2 relapses within 2 1/2 months of being diagnosed with GBS and at that point she was still calling it GBS, then 3 months later I relapsed again and now she is calling it CIDP.

:confused:

Marjie

I must add that after 2 NCV/EMG’s I didn’t want to have another one – the second one was very painful, and maybe that would have helped with diagnosis. She is talking about doing another one in a couple of months, after we see how the IVIG goes.

Marjie

I would have thought only 2 1/2 months after onset you would still be recovering from the first “episode”. I would think to have a true relapse you would have to have recovered from the original episode and then have another separate “attack” for want of a better word. The rate of recurrence is quoted as 3% which doesnt sound that high but when you think 3 out of 100 of us will get gbs again it is a lot mare daunting. I think at 2 months after onset you would more likely be suffering residuals. Just my opinion.

I think the term relapse is not the best.. But I had new nerve damage or demylination in that short or time, hence I called it a relapse.. I think residuals is the medical term people and doctors are throwing out there too often instead of making sure of a correct diagnosis… This I think is especially true if the original diagnosis is gbs, only later to find out the patient had cidp for example..deanop

Kinney:

Most GBS relapses occur within six weeks of the initial onset. This would suggest that it isn’t a relapse at all but that the treatment for the original onset didn’t turn the immune system off completely and the GBS just waned for a while before flaring up again.

After the first six weeks, the chances of getting another occurrence are about one in 200. This is much higher than the one in 200,000 chance per year of getting it in the first place. recurrence is rare, but it does happen. The causes of a relapse are generally the same things that can cause it in the first place unless you have CIDP instead of GBS.

There is another possibility that you may need to consider. If you do not get proper rest, diet, and don’t take care of yourself, the residual symptoms of GBS can flare up and give you something that resembles and feels like GBS. People on this site call that a ‘setback’ as opposed to a relapse. The cure for a relapse is to get plenty of rest.

With that in mind, if you have any doubt as to whether you are having a relapse or not, get yourself to a doctor today. It is better to be wrong than to let GBS destroy your nerves.

Lee

I was rediagnosed with CIDP when after 8 weeks my symptoms had not improved at all. I never had any periods of “getting better” even after 5 PE treatments & numerous courses of IVIG. But then the progressive form of CIDP is very different than the relapsing/remitting.

I think it is so important not to overdue it during the healing process; I still believe people tend to push too hard & underestimate the importance of resting the nerves so that they can have time to heal. One patient with GBS who was with me in inpatient rehab at Mayo was pushed too hard & he died; just quit breathing one night. As sick as I was, I always wondered what Sanders was even doing in rehab, he had absolutely nothing to work with. He should have been in the ER in my opinion…
Pam

I gewt the weird sensations and the electrical impulse type of shocks on an ongoing basis. These sensations do make me want to scratch and can feel “itchy”. I don’t think any of us can tell you how long they will last. It is different for each of us. I had GBS 25 years ago and other than a bit of tingling in my toes and fingertips , I didn’t have a huge pile of residuals. But as I age, things are returning and I now have more severe tingling, the shocks, creepy crawly feelings, etc. My proprocetion was never that bad so not an issue for me. I do wear orthotics but not the full brace. They are only in the soles of my shoes. This, to, is a more recent development. Hope this helps.

[QUOTE=istaroaz]
does anyone have any suggestions on how to make feet less painful & is there any exercises i can do to help gain the proprioception back without buying expensive equipment to do at home by myself safely? or does the proprioception just come back in time? does anyone wear or had to wear orthodics up passed ankle to keep ankles from moving latterally and for how long? also does anyoneone itch expecially on legs and feet because of weird sensation? and does anyone get short circuits through their body & how long will this happen for? does anyone know how to start a new thread outside of theads you been already posting in?
apprieciate any input
istaroaz[/QUOTE]

Hello! I’ve got some suggestions on what worked for me but they were not prescribed by a doctor – just something I “stumbled” upon (pun intended.)

For the proprioception go into the smallest room in your house – for me that’s the downstairs bathroom. Sit in a chair in the middle of the room, or stand if you can. Turn off all the lights and close your eyes. Now reach out and touch where you think the wall is. Keep doing this until you get it exactly – not banging into it by going too far, or easing into it by not going far enough – keep changing your position and doing your best to exactly touch the wall. Turn around, tilt your head, lift one leg up etc. etc. This is a quick and dirty way to reorient your body to where it is in space. It’s also pretty convenient since most people have to go into the bathroom and sit down at least once a day.

One of my college biology teachers gave us a lecture on drinking too much and what to do if you get the bed spins. If you, like me (:rolleyes:), have never had too much alcohol to drink here’s what happens… basically if you drink enough alcohol the fluid in your inner ear that is responsible for your proprioception becomes the wrong density thus misleading your body into thinking you are spinning around. So… the cure, assuming you haven’t completely polluted yourself, is to put the palms of your hands and the soles of your feet on a solid surface. They have more sensation nerves than say your back and so having all the nerves from your hands and feet say “we’re not moving” will overwhelm the inner ear sensation that is telling your body it is moving. That’s the theory anyway – of course I’ve NEVER had to test it out due to alcohol but I did find it worked pretty well for the proprioception – putting my palms flat against the walls as I stumble along and walking barefoot. Interestingly, even though I could not feel the bottoms of my feet at the time it still seemed to work out pretty well. My problems with proprioception are pretty much gone except for the occasional bout here and there.

I don’t wear orthotics, I should but I don’t. I do get the itchies and sometimes lotion helps with this though I’m not sure why, maybe it dulls the sensation? I still get short circuits, that just takes time and healing to get over – the myelin has to grow back before you’ll stop getting the short circuits, and even then if it doesn’t grow back as strong you might still get them. And it looks like you started a new thread but in case you can’t remember there is a little button at the top left of the forum main pages (near the top) that says “new thread”. 😀

Take care,

Julie

Yes, I had feelings like getting zapped or short circuit sensations, but alot of this happened early on in my healing one to two months post gbs/cidp.. I have spent alot of time, and therapy including an ent balance test, to correct/diagnose balance issues… Some things you may want to try, is like standing on a pillow: I use a balance disc now… I used to have my wife or kids watch me as I’d stand with eyes closed, standing on one leg etc…. And for me I’ve made the exercises progressively harder… I remember how it was a big deal for me to walk in the shower and close my eyes without fear of falling…I don’t know what you can do for the ankle pain.. I never took pain pills or had ankle bracing, although I probably needed both at one time… Maybe you need to rest those ankles more, and think about neurotin…. I still rest my ankles/body every day a lot.. My legs and ankles buzz/throb/ache pretty much all the time as well… Good luck.. deanop

[B]Hi and welcome to our family.

Ask your Dr to prescribe either Neurontin or Lyrica for the pain. That is what most here take and there are other drugs on the market for neuropathy pain.

With Neurontin you can go as high as 3600 -3800 mgs for relief. I don’t know the dosages for the other meds.[/B]

I do not know if you are gbs or cidp, my 11y/o is cidp, and DID have urinating issues as well as constipation. Nausea plagued him as well. Now that we get ivig regularly we no longer have these problems.
Dawn Kevins mom

kinney,

re the nausea – are your bowels moving regularly? i think you should see a doc abt this. take care. be well.

gene gbs 8-99
in numbers there is strength

I threw up every night for over a year. I would just fall into sleep and start throwing up. some people say it was possibly a form of seizures, others day it was due to the weak muscles that control the stomach and esophagus still others day it was because of the neurontin. Regardless of what caused it, it was awful and I hope it never happens again. After a little over a year it finally went away. Just be careful and try to keep track of when it happens and possibly if there is anything that triggers it. good luck

Don’t know if this is possible, but could it be an allergy?

I have celiac sprue which affects my upper GI system rather than the lower GI, which is more typical (or so I’ve been told). So I get horribly nauseous and vomit when I have something with gluten in it.

Dear Jan:

Welcome to the GBS family. I’m sorry that you ever had to hear about GBS.

Fatigue from GBS, for me, is an ever pervasive thing that you feel whether you work out or not. It always feels like the next day after partying all night. About 15% of all people who have GBS don’t get fatigued.

GBS symptoms and residuals seem to ebb with time. This means that your feet probably will get better, but how much better and how soon is anyones guess.

Any exercise is better than no exercise at all. The rule of thumb for GBS is that if you don’t recover 100% of your normal base line energy within 12 to 18 hours of a workout, then you overdid it. There aren’t any hard and fast numbers about how much exercise you can do before you start hurting yourself. You just have to use trial and error to see how much of a workout you can tolerate.

Good Luck

Lee

Jan you will learn to listen to your body, when you get tired you have to REST. Your eyes might feel like they want to close or your eye lids will droop. Your legs or arms might feel heavy as you get tired. I always told friends fatigue is worse than being tired, worse than being exhausted. fatigue is not being able to do it at all. When you start back to work you might have to cut back on the amount of exercise you do or the type of exercise. Water exercise might not be as hard on your body and will relax you also. Yoga might help with movement, balance, strenght and range of motion. Also chaning exercise routines will keep it fresh and keep working different areas. Count the different motions in your job and see where you are weaker and work on those body areas. With exercise you will accomplish more with less. Give yourself credit for those extra steps you take walking from the house to the bus stop or from the car to your desk. You will find a good balance that will not wear you out so you can not enjoy your evenings or weekends. You might have to back down on hours you work a day too. I hope you find a good balance in your routine. Don’t be afraid to tell your Doctors that you need help with rehab to do your job correctly. Also keep the communications open with your work place. Adjustments will have to be made somewhere at first. Stay possitive and remember be patient with your body.

Welcome, Jan. The good news is that you had a lite case! Just listen to your body – when is says rest, then rest! No more going for the “burn”. The extra sensitivity on your feet may ease – or not! You are getting some good advise from the above posts. Just read everything you can get your hands on.
Alma
GBS-MFv 1993 and 2004

Jangray, welcome to the forum.

Regarding recovery from exercise, Lee gives the standard advice. It might be best to start with stretching and range of motion at the gym and make sure that this is recoverable in the 12-18 hour range, then add more.

I had severe headaches on the left side at time of diagnosis of GBS. the Rehabilitation doctor said that it was myofascial pain because there was point tenderness and visibly tense muscles in my neck. This was because my muscles were weak and my posture changed as I tried to cope with the GBS. He injected the area with lidocaine and this helped tremendously. The pain did return after a few weeks, but not nearly so bad. It slowly resolved for me over the next month or two. You might ask/consider if you have something similar causing the jaw to neck pain. You might also think about if how you hold your head has changed and also if there are ways to help relieve tension in the neck muscles (like changing monitor height at work, how you hold a phone, how you hold a book/papers to read, etc. Taking time to stretch the neck periodically might help if it is due to weakness, even subtle weakness since GBSers seem to have trouble with sustained muscular activites.

On the feet issue, I assume you mean that you are hypersensitive to touch with bare feet. Do you do okay with shoes on? Some people need solid shoes/socks to protect against the hypersensitivity. If you have trouble despite this, it may mean that the nerves of the feet are annoyed enough that you might eventually benefit from neurontin or similar. This is standardly used for pain, but people’s definition of pain varies. Saying that you could barely stand to walk is an expression of pain, it just is fortunately circumstantial enough that maybe you can be okay most of the time, I hope.

With Hope for cure of these diseases.

Jan, the headaches may be because with the Miller Fisher variant your cranial nerves are affected…I never got headaches before but now I can almost trace the path of the pain directly to the various cranial nerves. Honestly I’d rather have nerve pain in my feet than my head – OUCH! But there is a good chance that given a little more time those nerves will heal better and the headaches will stop, or lessen. I’ve noticed that the headaches are worse when my senses are overwhelmed (too much light, noise etc.) so you might try paying attention to what’s going on with you when you get the headaches so maybe you can modulate things better. When my face is zinging I know I shouldn’t be trying to listen to music or watch TV as well…

Good luck and I can sympathize!

Julie

Please click one of the Quick Reply icons in the posts above to activate Quick Reply.

I wanted to answer your question about walking outside and then provide some other comments. I had GBS last year and didn’t walk unassisted for 7months. In fact, I ended up having to have heal cord surgeries and was in casts on both feet for 1 of those months.

What I realized when I began to walk, is that your skin renews itself and without activity the normal toughness on the bottom of your foot goes away. Don’t worry as you continue to walk the toughness will return.

I am amazed in reading this site the variability in GBS. My case was medium, but it took me long time to walk … I had severe pain and fatigue, but they both were gone in 6 months, others have these for years. I count myself lucky that I have no residuals that are directly related to GBS … the only thing I am working on is building muscle mass back, which is directly related to my not walking.

I am a gym rat, good luck on your work outs. I am 100% back in the upper body and moving in that direction with my lower body.

pgilroy, lucky bastard *LOL*:D Im a gym rat too but Im still dealing with all kinds of residuals, but Im getting more and more strength, but pain and heavy legs and arms are well comon in this home. I try to exercise at least 3 times a week at the gym I have work out things here at home, I have not used that much since my last relaps, My time to recover between exercise is around 24 hours and that is too long, Im very stubern and I go always out in the limit, when I want to throwup up then I know Im on my eged. And that heppens alot, why I want to get better and I know if I dont keep on nothing will gain. But this is too much and I would not say this was the right way, and my body says this is more enough. My hubby is very cleaver when comes to keeping me home when I have over done my self, then I sleep alot, and he dont wake me up until my time with the therapy is over, and say sorry dear I just forgot you had a session today *LOL* so he save me.

Jangray,

I, too, was diagnosed with Miller-Fisher Syndrome. For me, it was at the end of September. I was in the hospital for 2 weeks. I consider myself very lucky. My initial symptoms were double vision, and some tingling in my hands and feet. I was diagnosed immediately, thanks to an excellent neurologist and by the 5th day of my symptoms I was beginning plasma treatments.

I had horrible headaches, right from the beginning, and extreme sensitivity to light. I do think the Miller-Fisher variant does bring with it more head pain, because the cranial nerves are hit the hardest.

When I got out of the hospital, I went to a physical therapist. (In the hospital, as my symptoms were progressing, I lost the ability to move the muscles on the left side of my face.) In addition, I had sensitivity all over my face – I think due to the inflammation caused by the MFS. I had/have a tremendous physical therapy doctor, who is also an accupuncturist. For 4 months, I have been going to PT three times a week. Each session, I get electronic stimulation for my face, laser therapy, and accupuncture. Within about a week of starting accupuncture, my headaches went away completely. I myself couldn’t believe it. I would wake up with such head pain, unlike any headache I’ve ever had. And they just went away.

And each week, my symptoms are reduced. I believe the combination of treatments has done miracles for me. My double vision was mostly gone by Christmas (just a little double vision when I look extreme left and extreme right – hardly noticeable), my smile has returned, and I’d say about 85% of the muscle movement in my face has returned.

My physical therapy doctor keeps reminding me that my #1 job is to take care of myself. And that has been the key for me. Getting plenty of sleep (but not too much, because that would often make me more tired than if I got 7-8 hours of sleep), eating welll, exercising, not working too many hours. All this is good for my immune system. I was pretty active before I got MFS, and even though I had some of the autonomic nervous system issues some GBS patients get (low heartrate and low blood pressure), all that has subsided, and except for some remaining facial weakness, I feel back to my normal self. I was back to the gym as soon as my cathater was removed (5 weeks into the ordeal!). I had to slowly build up my stamina, something all my doctors emphasized (and apparently yours have, too). So, take it slow. As someone else said, it’s not about the burn right now. But even moderate exercise is great for your immune system.

The key for me was to really listen to my body. One thing my accupuncturist told me once, that sticks with me almost on a daily basis, is that our bodies have a tremendous ability to self-heal. So I try to do things that will support that healing.

And it sounds like you’re doing the same. I’m glad to hear you’re on the mend, and I wish you the very best.

hi tracey & welcome,

you MUST do the opposite of exercise. you MUST do less & MUST rest much more lying down. you will take forever to recover, if at all, if you keep up your present pace. if you have to work only 20 hrs a week, so be it. you may not even be able to work at all, as is my case & many here. it’s your life & therefore your call how your are going to handle this. good luck! take care. be well.

gene gbs 8-99
in numbers there is strength

Tracey,
Welcome to the forums……………………Gene is right…………..doing less is best:)

We all know how frustrating the recovery process is, but the good news is that, you ARE RECOVERING……………..being as slow as it is, you will recover!!!

Take it one step at a time and do only what you can………..things will get better.

Good luck,

Perry

Welcome Tracey,

I was in the middle of a lovely long reply to you last night, when all of a sudden my computer went off line and I lost the post:( . I will be more to the point today.

I think that so many of us have the same problem of ‘looking fine’, and unfortunately its very difficult to try and make our loved ones understand. It took my loving husband years to get it. Only after attending a conference for medical professionals, when he heard a lecture to other medical professionals explaining to them everything I had told him, did he understand on a deeper level. I think its a good thing to go to a chapter/area meeting when there is one (they are sometimes difficult to organize) and take your family with you, there they will be able to see others who suffer in the same way you do – and it may help them understand a little more of what might be going on. After all, this isnt like a cold one is trying to get over, which is difficult for them to understand.

If you have registered with the foundation, you would have, or will be getting some information, including a newsletter – in there, in the middle of the newsletter, you will find a yellow insert with liaison details. If you find your state you can find a liaison nearest to you and contact them to see if they have any upcoming meetings. I hope that helps.

tracey,

many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi everyone,
I’m new to this group too and this is my first post. I’m 45 years old and was diagnosed with GB last April of 07. I had no idea how my life would change after that.

Spent 8 days in the hospital with 5 days of IVIG. PT some of that week then home to be trapped in a my bedroom, It took days before I could even get down the stairs, scooting down on my butt and holding the railing. Everything was an extreme effort. When my 3 month temp handicap placard was nearing it’s term I asked for another one. Well, my doc set me up for a permanent placard, that news just devistated me. I’m not going to be a cripple for the rest of my life I thought.

Well, here I am, back at work after being off work for almost 2 months. Sore tired and exhausted. Yes, this cold winter is hard to take also. Had several more IVIG treatments, infact, have one scheduled for this Saturday. Hope it helps. It used to do more for me but doesn’t seem to work as well anymore.

The nuropothy was so painful, I was taking vicodin just to get throught the day. Finally my doc put me on Lyrica in Dec. It seems to help, only taking 25 mg for now but being bumped to 125 mg next week. Careful with the excercise, you think it’ll help but it requires a lot of energy and time to recover from. Want to talk with someone locally who has had this and get some support.

Some people here at work understand but others just don’t get it. Stress is a big factor. My performance started to slip and my boss wanted to put me on a performance inprovement plan. Well, she put me in a calmer environment and things are tollerable for now. I feel for all of you that have kids and family to take care of, I don’t know how you do it, but keep it up. Well, enough for now.

Peace,
Dexter in Chicago
Hi All,

hey traci,
I am located in southeastern ohio, not sure if we are close or not so send me a e mail or pm me. i’ll see what i can do for you

Sherry Price

I think everyone is right here with respect to you taking it easy. I spent 6 weeks in the hospital (both CCU and rehab) and thought that was the worse. I was so wrong, it took six more months before I felt normal again (i.e., no fatigue). It will come, take it slowly.

Peter

Just a comment on Lyrica… I would agree with Gene to try Neurontin first. Neurontin is a drug for nerve pain that is non-addictive, UNLIKE Lyrica, which is heavily addictive. I tried it for 10 days and it gave me some really bad side-effects (double vision, fluid retention in my ears, burning pain up and down my spine, eye pain, lack of balance, weakness, brain fog, memory loss), so I needed to stop taking it. The withdrawal was utter HELL and lasted for weeks, and I was on a low dose for a very short time. I felt like a junkie going off heroin or something, for real. I never want to go through that again, and I would never wish that on anyone else as well. So personally, I wouldn’t recommend it as a first option to anyone. When I talked to my pharmacist about the withdrawal problems I was having, she was surprised that the doctor didn’t prescribe Neurontin first because it was so much safer, wasn’t addictive, and wasn’t a controlled substance like Lyrica. I think it all goes back to patents and generic drugs, and the drug companies push their newer medications harder than the older ones because that’s where their profits lie, even though the older ones might be time-tested and safer with fewer side-effects. ANYWAY, that was just my experience, so take it for what it’s worth.

Both Neurontin and Lyrica and Antiepileptic/anticonvulsant drugs but have been approved for the use of neuropathic pain. I had some bad side effects to Lyrica, I think because they started me off on 150mg instead of slowly introducing it, was on it for 10 days and had no problem at all coming off it – no addiction whatsoever. I honestly believe that each drug has a different effect on each person, its a matter of trial and error unfortunately.

[QUOTE=dunmyt]Hi All,
I am 43 years old and new to this forum but I was diagnosed w/GBS on Nov 8 ’07. I spent a week in the hospital on the IVIG treatment and then 8 weeks in therapy. I am back to work now but I’m finding myself getting fatigued so easily that some days I can barely wait to get home & lay down. My legs & arms are so tired and most days are throbbing. My question is do you guys think exercise will help build up my endurance level? I’m afraid to start for fear I’ll prompt a relapse. I am getting so frustrated with myself because I’m not as active as I was before. My family doesn’t fully understand my limitations either because for all outward appearances I am “back to normal”. Any suggestions on how to get through to them? I’m also looking for a local support group to attend meetings, any suggestions on how I can locate one? Thanks in advance :)[/QUOTE]
Hi dunmyt, I understand your feelings. I can’t do things I used to do. About my work well I just can’t do warehouse work no more, did that for 14 yrs.
Some days I can do more but some days I do less and thats only staying at home; cause of the fatigue and weakness. About a new job now. I’m going to college to learn office skills and maybe get a light type of job that maybe I could handle.But I’m not sure if I’m going to handle a 9 to 5 job.I don’t know yet and makes me think.
Sonny had GBS 2004

Why is it that I can get Lyrica without a problem but the Provigil requires some special approval which I’m still waiting for? I hope it’s worth is because currently I’m taking the last of my Adderal which I just found out requires special approval now too. It’s the only thing that helps me to get out of bed in the morning.
Damn insurance companies.
Dex

I have been on Provigil just short of 2 years now. To say that it has changed my life is an understatement, and trying to stop has lead to nothing but trauma.

I want to bring to the newer patients attention that when in recovery from GBS, the reason you have fatigue for the first year or two is that your body is healing. The fatigue you feel at this stage is your body telling you that you need to rest because to push yourself to the limit will have consequences. The first year after starting Provigil I was able to push and push and felt GREAT, even though I kept telling myself that I would know when to stop ……….. unfortunately it didnt quite happen like that and I did overdo it drastically. Please, please be very careful when taking the Provigil, remember that having had GBS in the last year or two the natural thing is to feel fatigued. Please dont do yourselves disservice by being lulled into a false sense of health when your body really does need the rest.

On another note, I think (think being the operative word), I may go to the doctor soon and discuss the horrible rash I have had since starting the medication. There is a warning regarding a rash, and since it sometimes bleeds and causes a great deal of stress to me, I think i should see my doc – just scared to take my ‘life saving’ device away specially since i have tried in the past.

Below warding on the Provigil site.
[QUOTE]
[B]Serious Rash, including Stevens-Johnson Syndrome[/B]
[B]Serious rash requiring hospitalization and discontinuation of treatment has been reported in adults and children in association with the use of modafinil.[/B]
[/QUOTE]

It was a year ago that I first stood up for a few seconds. I was down for the count from October 2006 til March 2007 – crawling and scooting on the floor of my home. I had GBS twice and if I were to get it a third time, I would do it the same way. Because I did not push it to walk and waited until my legs felt ready, I did not need pain killers. I seriously believe that getting GBSers to do PT is wrong. If the nerves are damaged, why would you want to do more damage? I started walking gradually over the last year and find that I still need more time to repair. I thought I was ready to get a normal life, but I find that my feet hurt and get numb if I walk too much. (And that isn’t alot.)
So I would recommend that if you don’t need to push it, don’t. Walking around the house is plenty. Wait for the body to repair – and unfortunately, that takes quite awhile. Look inward and see what lesson this illness brings. I am just starting to realize mine. After reading the book AWARENESS, I think that losing my body and my friends and my job awakened me to the ephemeral quality of them. Sartre said, “Hell is other people.” I learned that I could not count on anyone. Sad but true. I am not bitter, but I am more awakened.

Tracey,

I would say that the the rash (or whatever it is) started a couple of months into starting Provigil. It has never really abated, but lies inflamed and red till the next ‘breakout’ of scratching, oozing and blood – because of the scratching:eek:

Thanks for talking me out of taking Provigil ya’ll. 😮

Sonny,

Your “post GBS Residuals” are VERY common!! Don’t stress about them. Myself, (and 99% of all GBSer’s) suffer from fatigue EVERY day. So, just continue on,…………….. life will get better.

Perry Leach

Jules,

Provigil has been wonderful for me, it has changed my life – only that one side affect i seem to have.

Hi,
I sent you a pm.
Dawn

Hi!
Currently, I am faced with the same dilema. Kevin has been extraordinarily week and tired for the past week. We all had some sort of strange flu, sinus issues, extreme dizziness, weak. I was wondering if this is what is causing residuals to flare up, or if we have cidp. I called the neuro and he said to give it a month and then we should come in if we do not see a change for the good.

Do you start out weak in the am and get stronger as the day goes on? I guess I am asking from both your current situation as well as gbs residuals in general. I hope you feel better soon. Have a nice relaxing weekend.
Dawn Kevies mom

Dear Frightened Friends ~ in a word, yes. It is not unusual for residuals to flare when a person is under stress. A cold, flu, virus, etc. are a stress on the body and therefore can exacerbate symptoms (just as emotional stress can do). [I][U]And[/U][/I] it can be very scary 😮 Americans are use to controlling every little thing in their life. FOM ~ you did everything you possibly could to avoid this! And I believe that it is important to do all that we can for prevention. But, you still breath the same air as everyone else and you still touch objects that others have, etc. etc. Early on I would even were a mask during the winter months when I had to be in public areas (I actually became a hermit for several years). But you only need 1 person to go outside of the home to introduce a virus or bacteria. Just remember, as [I]Gene would tell you, rest, rest, rest.[/I] We need so much more than the “average” person because of this disease process. Don’t fight it ~ enjoy it! It’s a great time for reading, watching a movie, writing a letter and drinking lots of herbal tea to stay hydrated. Dehydration will make any illness worse because the body has to work so much harder to stay balanced.

To your health 🙂

I would agree totally with Judy. A neurologist told me that the body is so ravaged by GBS that any disease can cause extreme reisdual flare ups. He told me to get in bed whenever I thought I might be getting a cold and expect to stay there. My residuals always get worse with fatigue, or colds etc. Scary as it is it is something we have to accept. We can control our lives only so much and then we must accept what is happening and deal with it as best we can. Hoping you get well soon, Jeff

I was soooooo ill 2 weeks ago. My child had mono and I thought I might have gotten it. Well my Primary doctor looked at me like I was crazy. I was sooo weak I was slurring my words, limping, and couldn’t even swallow. She asked me if I drank or was drinking. Boy, This pissed me off. I had just left work to see her. She had NOOOOOO compasssion and didn’t even test my muscle strenght or reflexes. I could barely drive home and stayed in bed for 3 days. I finally got over it. Just exhausted I guess, but I was so upset with the doc. They just don’t get it. I wish we could always see a neuro but they always say when your emg is normal so are you. This pisses me off too. Well, I guess you can figure this out by now that I’m not crazy about docs and I’m a nurse. Go figure. I do HATE these RESIDUALS. I’d be a lyer if I said I was OK with it. NOBODY UNDERSTANDS, except you guys. Thanks for letting me vent. xoxoxoxoxoxxoxo Roxie

Roxie, If one said that to me I would have THUMPED her/him up side the Head!:mad: You deserve RESPECT not ridicule! Write a STURN letter to that dr and let loose your pen!!!! You don’t need more stress to deal with! HUGS!!!

Lori, it doesn’t make sense, but than again look what resids you are talking about and from what….nobody knows the answers to this mysterious disease/syndrome. My family all have had the weird flu/cold/upper respiratory virus over the last month and a half. I was number 3 out of 4, even though I wash and eat better than all the rest, I still have the cough along with my chronic cough. everybody else was sick for about 4 days but not me. can’t figure it out. Continue to rest, drink alot;) whatever you wish and eat fruits and veggies even when you don’t want to. The resids will settle down soon as long as you take it easy. take care.

The catheter that you mention, is it for urine? If it is for urine, I’m surprised they havent tried to get him off it unless of course there is another reason he has it in.

With regards to IVIg, it is given during the active phase of GBS, and your dad is out of hospital and moving about so IVIg will be of no benefit to him. I think the posts you refer to relate to CIDP which patients get because they are progressing or relapsing. The best thing to benefit your dad would be to have physical and possibly occupational therapy in order to teach his muscles the correct way of doing things again.

rakshanda,

if he takes neurontin for his pain instead of percoset, it is better plus he will need less laxatives. pt/ot must be recovered from in 12 to 18 hours or it is too much. time will do the rest. take care. be well.

gene gbs 8-99
in numbers there is strength

They say the chances of getting GBS again is 1 – 3 %. One cannot go by statistics though. Chances of getting it again are rare, but there are some people do. After recovery there are chances of the residuals flarring up, but this does not mean that it is a ‘new’ attack of GBS. I dont think anyone can answer if getting it a second time around is worse, unfortunately that is something I think could only be known after the attack.

A great number of us have had children after GBS, I have had 2 healthy children since my onset. GBS as such is not hereditary.

Ann,
I had it in the 1986 and it was fairly mild. I had could still walk, but slowly. When I got it twenty years later, I could not use my arms or legs. BUT looking on the bright side, the stress I was under before my second GBS was much worse. I am of the belief that GBS is like a tennis serve. Stress is like throwing the ball in the air and something like an infection or vaccination slams the ball. I like how they say it is rare to get it a second time. Yeah right. It started coming in September and peaked in October 2006. I am walking now but not fully recovered. I think we need to feel in control so I hope that avoiding stress will let me avoid this a THIRD time. You can read my old posts for more details.

Hi Ann

When I was in hospital with my GBS there was also another gentlemen in rehab recovering from a 2nd bout 25 yrs after his first. The first time he said he said he had the flu, then GBS and all but recovered after 5 mths with just fatigue and weak thighs as his residuals. The second time he had slightly different symptoms following a bout of diarrhoea, ended up more paralysed than the first time and his recovery has been less significant than the first time round and he is now wheelchair bound with limited use of his upper body and after a year he just told me yesterday that he initiated standing up and walking on his own for a few steps so that’s is a major breakthrough and sooooo cool to hear. He is also getting more movement back in his hands, slowly but surely but he’s being very positive and taking it in his stride which is amazing under the circumstances. In my opinion from what I’ve seen and read I think it’s fair to say the more times you get it the harder the toll it takes on your body and the longer the recovery.

ann,

repeative gbs attacks can be like the first or so different that using the first attack as a reference is worthless.

gene [not at home]

I had my daughter almost 2 years after my GBS and although my pregnancy, labor and delivery were by the book, shortly after she was born I began to develope many problems, allergies-to food, medication and asthma. I have worrried and worrried over the years if my “condition” would cause her to have problems or make her vulnerable to getting GBS but she is now 16 years old and she always has been the picture of health. When she was a baby she did not so much as spit up. 😀

Karen

I also had the same question a few months ago. Go the the search section and type in hyperbaric or however you spell it.

Good luck.
Lori

Peggy,

I am posting a link from a thread that was started last year. Just cut and past the relevant link.

[url]www.gbs-cidp.org/forums/showthread.php?t=164&highlight=hyperbaric[/url]

PK,

My case was described as “mild” my symptoms started in March of ’05. I’ve told my wife its like a roller coaster ride, a few days good a few days not so good. For me the worst of it lasted about 6 months, then the good days turned into good weeks. Now, everytime I get sick I have bad days. The feeling you describe in your feet and hands sound the same as I had. You will learn there is no normal with gbs, but the info on this site is powerful.

Todd

PK,

Good to hear you are still able to walk and do things for youself. Your case sounds similar to mine. Based on my experience it is not unusual to have good days followed by bad days. Have you received the results of your spinal tap yet? Wish you well in your progress and you will make progress with time. Don’t push to hard listen to the signals of your body. My phlosiphy was no pain no gain. Which can lead to serious set backs when it comes to GBS. I am sorry to see you here because of GBS or some other neurological affliction, like so many others, I find much support comes from this group and explained in a way that is understandable. Keep us up to date on your progress.

pk,

Like you, it took the doctor’s awhile to dx me. They said at that point the progression had stopped so there was no point in treating me.

Todd