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Living with Polyneuropathy CIDP, GBS, & CMT

Setback with New Activity

I have been doing great four months into recovery. Some days now I actually feel so much like my old self that I forget about my limitations. Yesterday, I did the reduced workout on an exercise DVD. Last night, I struggled with back, neck, and shoulder tightness along with lots of muscle twitches. I might not have been ready yet for this activity. How do you decide when to try a new activity? When does this get better?

For me, I simply try things and if its too uncomfortable I know that my body is not ready for it. And for me, I can tell if its merely a stretching of the muscle, or if there's pain involved. If it actually hurts, I don't proceed.

That’s a good question Tarhealing. I’m about as far into this thing as you are and there are times when my hands shake so I can’t close a button or when I walk at a snail’s pace. Other times I’m getting on just fine.

i had g.b. almost 3 years ago. they said i had a mild case of it. i took a month off of work and did physical therapy that drained me every time. i would come home and take a solid 2-3 hour nap. when i got back to work for the first 3-4 weeks my feet would be numb from the ankles down when i left, not to mention the pain down my left leg to my feet on the way in. i have been working out relatively consistantly for the last 8 months or so at a gym. i usually get sore every time and i’m not really using heavy weights. about 40-50 lbs for my upper body. i also get on an eliptical for 10-14 minutes with higher resistance every two minutes. my work schedule used to be crazy, like 11-12 hours every day starting at 4am, but now is much better. 8hours a day starting at 6am and that seems to help. i still get numb feet every day, but not the whole foot anymore. just patches on each foot, but i have been dealing with a lot of pain in my feet also, sometimes severe, sometimes not. my legs are ok but they tend to tire out real fast. with all that being said if i could actually forget about my limitations that would be golden so i would say to you, keep it going and if you wear out then dont do it that day or the next. thats what i started doing about 2-3 months ago. i used to do a 30-45 min workout and now i do a 20-30 min workout. ill try to go 2 days in a row and take the third one off, and only do the eliptical now every 3rd day instead of every time i go. it seems to keep me a little fresher and its helped me lose a little weight that i gained from switching my blood pressure meds. i can still do everything i did before, it just takes me a little longer from time to time. i hope this helps, best of luck to you.

After one year of diagnosis I still am not sure of my limitations. Like you I can feel good one day and enthusiastically try to accomplish many things throughout the day. I will then pay for that for two or three days with extreme pain in my feet, burning in my extremities, and heavy fatigue. My case was diagnosed as being mild as well however the length of time has weakened my otherwise strong and healthy body. My symptoms are actually worse now than they were when I first was diagnosed so that baffles me. I have to keep reminding myself that it is not a competition with myself to keep building up strength as I did when I was younger, but rather I just need to keep moving to keep my body healthy.

Before I got sick, I could push myself to the point of exhaustion. If I felt sore the next day, that was a GOOD thing. Now, if I push myself to that point, I am wiped out for a week....and I mean TOTALLY WIPED OUT. And never mind pushing myself to the point of feeling sore. Besides, feeling "sore" is my normal state these days. If I were to push myself to the point of feeling MORE sore....well.....I am not sure what would happen if I did that, but I am guessing it wouldn’t be good. For me, its a delicate balance. I want to keep improving, but I have to be careful not to set myself back instead. I don't know if its this way for everyone. I came down with GBS about four years ago. I was almost completely paralyzed, spent four days in ICU, spent a month in the hospital, (two weeks in an acute care hospital, two weeks in a rehab) I went to the emergency room seven or eight times before finally convincing them to admit me. I had crappy insurance so I guess they were hoping I would go away and die rather than cost them money? Or maybe they really thought i was faking? (which is what they implied...that, and they asked me if there was a history of mental illness in my family and explained that anxiety can cause symptoms like numbness) They didnt believe that I was really sick and they kept sending me home. The whole experience was a nightmare. I wish I could just forget about it and move on with my life, but I cant because I live with constant pain and fatigue. I am pissed off at the world today....I want to go back to work so badly! I cant afford to live off of disability and I cannot possibly do the kind of work I did before I got sick. I have office skills and I think maybe I could handle an office job because I could sit down, but I have no experience and all the jobs I apply for want experience. I am not sure how they expect you to GET experience if all the jobs want experienced people. But...I am getting off topic.Forgive me.... I am having a really bad day today.

My advice to you would be to push yourself a teeny bit at a time. Be careful not to hurt yourself or set yourself back....easy does it and pay attention to your body and if you start to feel pain or exhaustion, stop.

So sorry for your ongoing disability Qweens. Maybe you could get representative from your local disability office to help you re-enter the work place. There is a federal program called Ticket to Work, they can send you to classes, school or training and help you. Many places are glad to hire someone in your situation, handicapped needing reasonable accommodations, government jobs will give you extra points. I was disabled from cancer treatments years ago and they paid for me to go to graduate school.

Tarhealing - best of luck with your recovery! If you are breaking out the exercise DVD’s, sounds like you’re well on the way. You’re comments really struck me. I really wish I had asked your question early in my own recovery. For me anyway, the hard work that’s so good for my muscles and cardiovascular system, sometimes isn’t so kind to my nervous system. As an (ex)athlete, I prescribed to the “no pain, no gain” phylosophy. During initial rehab, I probably over did it (with the neurologist and physical therapists’ blessing), resulting another hospital stay, more IVIG, and a new neurologist! While the second hospital stay may have happened anyway, I have had to learn to balance effort with rest, which has been difficult for me to accept. But now after 8 months of recovery, the lesson has sunk in, and I’m getting pretty good at listening to my weak legs, angry feet and tingly hands when I’m reaching my limit. On bad days, I stay off my feet as much as possible, and limit heavy use of my hands. Typically, after a day or so of limited activity, I’m able to resume a more normal exercise routine, which includes core strengthening exercise, upper body work, and stationary bike work.

I guess for me anyway, learning to listen to what my new body is telling me has been the key to recovery. But it took me 3 months to begin to understand the new language my body now speaks!

Tommy-I was quite the runner before all this happened 4 months ago. I never paid much attention to pain. I just ran through it until it got too bad then I would have the problem fixed and run again. Probably not the healthiest way to be but it worked for many years and races. This problem, however, has not been easy to fix and I have also learned my lesson along the way. It's so strange but I just don't know what to expect from my body now. I could run a marathon before and my legs would be exhausted after but better each consecutive day until I was jogging again by the end of the week. Now, I can over do it and not realize it at the time other than being tired. That night and the next couple of days, I might have strange numbness in different areas of my legs, shaky hands& face, achy back, weird pains in my feet, or not. It's so unpredictable to me but always predictable that I will have some kind of problem if I push myself too much. I think you are onto something with this more normal exercise routine. I do so much better when I am doing core strengthening exercise, limited running or walking, or stationary bike work. I have had trouble working upper body work back into my routine. My back got so weak during all of this and I am having to go extremely slow with any weights. I am okay with never running another marathon or long distance race but I dream of running a 5k even if it is slow. It's just so much a part of what I love and who I am or was. And I don't want to lose myself. But you are right, I need to listen to my new body. I am grateful for my recovery so far and I don't want to jeopardize it. I am lucky to be making it through a couple of work days now and all my activity in between. I have come a long way. I keep trying to understand something so misunderstood. I really appreciate all of the responses and feedback.

I believe I am dealing with this right now. My hands get fatigued very easily and then will feel clumsy and weak. It makes it hard to work all day because I use a mouse and eventually your hands get sore just from moving the mouse around. My hands also get really shaky after using them.

Thank you for your question, as I have been asking the same things. And because i needed the answers you got. After just seeing a new neurologist and he is now transferring the diagnosos of my GBS (SIDP a more subacute 6-8 week onset vs AIDP the typical GBS) to CIDP (chronic inflammatory demyelinating neuropathy), the so-called cousin to GBS. Im thrilled he decided to ive me more IVIG, as my muscle cramping is becoming more commmon and widespread working its way up and already to my hips. Ive been listening to my body too, like the others have said they had to learn, and like them, Im a rock climber and just not used to laying around or fitting recovery time into ky schedule like my body is clearly demanding of me! So again, thank you, because you All reaffirm what I know I need to do, and Im going to try to be better.

I'm not sure if any one of us that has had GBS ,can say when anything is going to happen...I know I cant ...As soon as I think I'm getting better...My feet and hands remind me that I need to slow things down...My mind is willing B U T T !!!!!!my body is telling me no...It's hard for me because, I'm a get up and go kind of person....Every case of GBS is different and getting better is a slow process...I have to remind my self of this every day when I get up and put my feet on the floor for the first time and I go in to orbit......So try to take it slow...slow...slow...

I will give you my take on the working out from going through it with my wife. The therapist told us not to over do it as this could lead to a relapse. The thing with gbs is it is not like working out in a normal life. It was explained that you just want to work your body not strain it or push it like you would if you never had GBS. You only have so much energy in your body and It has to be conserved. Or put another way you are like a battery, you start the day fully charged and everything you do takes a little bit of that energy. When you use all of that energy up It may take 2 or 3 days to recharge. It is not like someone who has not had this where they take a nap for an hour or two and they are ready to go.. Most time times in the sessions with the physical therapist my wife would tell that she could do more or more weights but they did not want her to work that hard. They kept reminding us that we are not building muscle just stretching and toning it. It has been a year and a half now since she had this and was paralyzed from the shoulders down. She could talk and move her fingers and that was it. After we got out of the hospital I would do all of the small things for her not because she could not do them but to let her have the energy to do the things that were fun, like enjoying our grandson or going outside for walks. It was a tough sell for her as she new that she could do the things I was doing for her. She is almost back to where she was before GBS hit. She does comment that her endurance is still not what it was but she is swimming and working out on the machines like always. The therapists hammered into me to watch for certain signs as we were doing things. Like how she walked and her body posture as this would tell me that it was time to pull back. I would see this and we would stop , if we did not she would be sore and wiped out like some of you are describing and the next day would not be fun. The thing is with this by the time you are exhausted it is to late, you have over done it. Last bit of my advice would be to find a therapist or a trainer that has had some experience in GBS as in working with people that had it. I know that I may seem like I have all of the answers but we had very good. doctors and rehab people and I am just telling everyone what we were told.

Wow, that's a lot. thanks for sharing.

My story is very similar to Queens Gambit so I won't go into detail. I will say I am a 57 year old woman and I received multiple doses of antibiotics for a chest and sinus infection I could not kick for over 5 months. This led to GBS. Suffice it to say I made it through the diagnosis, IVIG, the tests and all the embarrassment of being unable to care for myself in the hospital. I am exactly one year from release (11/1/13) from the neurology unit and sent to the physical therapy unit. I was hospitalized for about 6 weeks all together. I had no insurance and in the US that means no additional therapy. Even my neurologist wouldn't see me outside of the hospital. I went home with the care of my son and friends. They built me a balance bar so I could exercise by myself. My son walked me up and down the stairs of my townhouse. I got better quickly. I had no choice. I incurred almost $500,000 in medical bills. I was called back to work 1/1/14. I travel to every job and pull a 5th wheel to live in. I sit at work which helps. The days are VERY long. I work 4 12 days and an 8 hour day week in and week out for usually 5 months at a time. I work and sleep. Period. I climb stairs for exercise. It's all i can handle. If I go out to eat and I have drinks and eat red meat, I pay for it for a couple of days. For me diet is the key to handling the pain. I try to eat very healthy (fruit, veg, fish, nuts etc). I can tell you with all honesty I am 70% back to normal. I have pain every night and every morning. During the day not so much. I am beyond tired. I don't know what it feels like anymore to have energy. Having said all that negative stuff, I will say I am thankful I am mobile, not in severe pain anymore, and I am working. Even if work and sleep is all I can handle today. I know the day may come that I can't, but it's not today. And if I have anything to say or do about it, it won't be anytime soon. I refuse to let this "syndrome" take over my ENTIRE life. Remember that you have the control. If you push yourself you might pay dearly. Take it easy on yourself and go slowly and stay positive. You never know they may develop something that will help or even cure this.

My diet is not that great any more. I mostly live on cereal because its easy to make and cheap. Good food is more expensive than crappy food, and I have been out of work since I got sick and cannot really afford good quality food..I am about to try working again, at a job where I wont be on my feet, but it is a full time job and I am afraid I wont be able to make it due to the fatigue. Sadly, like you, I have no choice. I cannot live on the amount they give me for disability, and I am about to become homeless if I don’t do something....but back to diet, I am wondering if maybe improving my diet will help my energy level. ..Thing is, preparing healthy foods for energy requires the energy which I don’t have. It also requires money. You need to work to earn money, and that requires energy., I don’t have energy or money, I am too exhausted to put the effort into cooking, too broke to afford decent food, too exhausted to earn the money to afford better food, but the better food might give me energy to work.. Hahaha its like a vicious circle! ..

I guess I will just grit my teeth and force myself. But I will try not to push myself too hard. I know that usually ends up being a terrible idea...and I pay for it if I do. I think I will probably just work and sleep like you do. I can totally imagine that....because I am sooooo tired all of the time and everything hurts..

Hi Qweens,
I’m glad you mentioned that they thought you were having anxiety and didn’t really believe you. I had a similar experience and was pretty much devastated when, upon my first admission (because my small-town doc new it was serious) the specialist decided to send me home with the diagnosis of anxiety despite the fact I couldn’t walk when I left. To this day I am both pissed and relieved. I’m am pissed because they called it anxiety when I was in terrible pain and couldn’t walk, also had heart rate and blood pressure changes. I’m relieved because when I was readmitted, I was lucky enough to get a different Neuro group, who diagnosed me by just reading my history, then confirmed after starting the IVIG. So disgusting that when someone can’t put a label on your symptoms, they assume it is psychological. I see it too often in health care, I am a nurse.



QweensGambit said:

Before I got sick, I could push myself to the point of exhaustion. If I felt sore the next day, that was a GOOD thing. Now, if I push myself to that point, I am wiped out for a week…and I mean TOTALLY WIPED OUT. And never mind pushing myself to the point of feeling sore. Besides, feeling “sore” is my normal state these days. If I were to push myself to the point of feeling MORE sore…well…I am not sure what would happen if I did that, but I am guessing it wouldn’t be good. For me, its a delicate balance. I want to keep improving, but I have to be careful not to set myself back instead. I don’t know if its this way for everyone. I came down with GBS about four years ago. I was almost completely paralyzed, spent four days in ICU, spent a month in the hospital, (two weeks in an acute care hospital, two weeks in a rehab) I went to the emergency room seven or eight times before finally convincing them to admit me. I had crappy insurance so I guess they were hoping I would go away and die rather than cost them money? Or maybe they really thought i was faking? (which is what they implied…that, and they asked me if there was a history of mental illness in my family and explained that anxiety can cause symptoms like numbness) They didnt believe that I was really sick and they kept sending me home. The whole experience was a nightmare. I wish I could just forget about it and move on with my life, but I cant because I live with constant pain and fatigue. I am pissed off at the world today…I want to go back to work so badly! I cant afford to live off of disability and I cannot possibly do the kind of work I did before I got sick. I have office skills and I think maybe I could handle an office job because I could sit down, but I have no experience and all the jobs I apply for want experience. I am not sure how they expect you to GET experience if all the jobs want experienced people. But…I am getting off topic.Forgive me… I am having a really bad day today.

My advice to you would be to push yourself a teeny bit at a time. Be careful not to hurt yourself or set yourself back…easy does it and pay attention to your body and if you start to feel pain or exhaustion, stop.

Hi 2dogs3catsandthekids,

I got the initial anxiety diagnosis too and it was so upsetting. I told them that any anxiety was secondary to what was happening to me but the primary doctor didn't believe me. He didn't understand why I couldn't walk if I "looked so good." He would understand if he had experienced something so devastating but I couldn't make him understand and at the time I didn't understand it either. It was in my record and plagued me every time another doctor referred to my records. Still hurts me. Luckily, I turned away from all negative doctors and found positive understanding and knowledgeable ones. I just wished I could have landed in the their hands initially while I was at my worst. It's hard after time to show them how it was and you really have to know the history to proceed forward because it follows you for quite a while. I had heart rate trouble too at one point and was told to "breathe in a bag." That's my favorite! While breathing in a bag may help if you are hyperventilating, it does not help Guillain Barre symptoms improve. I am a pharmacist so I'm in the health care field too. Sorry you had this happen to you too. Glad to know I'm not alone in this frustration. Suffering with Guillain Barre is bad enough, but being dismissed while you are suffering with Guillain Barre is even worse! My hope is a better understanding for all involved.

After 5 months away from work, my boss contacted me near the end of January about coming back on a limited schedule. I started back the first of this month and after the 2nd week, I had a weird attack that was pretty similar to a heart attack, but apparently was not according to EKGs. Right after that, I began experiencing the classic jittery/tingly/not-quite-in-control feelings in my arms. It had never affected my lower arms before, so this is a new phase and I don't know what to expect myself.