Question about overdoing it
AnonymousApril 16, 2009 at 11:42 am
Hi, I would greatly appreciate if people would answer. I had something like GBS/CIDP two years ago (there is controversy still) which came on over two weeks and is associated with bilateral foot drop, trouble walking, pain in the feet and tingling in the hands. It is atypical because I keep brisk reflexes, the NCV tests while abnormal in most nerves, were not severely abnormal–not enough to meet the “definition” of GBS, my vision is affected, etc. All these are atypical manifestations that many of you have, but the number of atypicals has led to questioning what the process really is. This is just background. The question is about fatigue. I get really, really tired if I walk more than my usual amount a day. This is cumulative fatigue in that if I walk more than usual two days in a week, I still feel badly the next week. I have tried to ask this before and was not clear, but do others have cumulative fatigue? It is hard because there is discussion that I need to train myself to do more, and yet I do not train. I was able to advance from 1200 to 2500 steps a day by slowly increasing, but whenever a day requires 4000-5000 steps (which my work sometimes needs), I feel like I have been run over by a bus and two to three days in a row make me feel like I have been run over by a caravan of busses and it is so much harder to walk and my gait is a lot more abnormal. What I really do not understand is why I still feel awful a week later? Anyone else with this or have suggestions?
WithHope for a cure of these diseases
AnonymousApril 16, 2009 at 11:56 am
Hi WithHope: I had exactly the same issue about a year after GBS. I had stopped improving and my neurologist urged me to walk through the pain and have a mental goal of what to walk, no matter what my body did. I tried that for six months. My fatigue was so bad after walking that I found it almost impossible to walk the next day. Later my pain doctor told me I had actually injured my muscles, tearing some and putting pressure on weakened muscles so pain would occur. He distinguished between fatigue and fatigability-fatigability is the time it takes for the leg to recover from exertion. My recovery time was 24 hours and that is way too long. That is when he said I needed to go back to the wheel chair and not push any more-pushing after GBS he said is the wrong advice.
So when you do too much you are hurting both muscles and nerves and that might account for the residual fatigue lasting a week. It certainly lasted several days for me. It is a sign you are doing too much and if you listen to other people rather than your own body it may be harmful. My suggestion: listen to your body and if your recovery time is so long, and the fatigue lasts such a long time, you are doing too much. Jeff
April 16, 2009 at 2:00 pm
Hi With Hope,
Sorry you are not feeling well. When Kevie over does it, which is often, he needs about 5 days to recover. I especially notice the fatigue hits him in the shoulders, it is as if his entire body tenses up so bad that his shoulders appear to be lifted as if he is shrugging and they roll inward. Kevin’s major complaint is his feet, especially the bottoms. To make sure that it is not just an orthodic issue, we are going to go to the peds pod. to see if orthod are in order. Even something like overdoing typing results in pain in his hands and a tremor results. In my miniscule brain, the way I see it, for example, feet are not getting message from brain to move muscles, so now there is weakening of the muscles and the next group of muscles that is taking over the job gets over worked doing their job and the job of the feet. Then I think the chain of events just works its way up as Kevin continues to push therefore resulting in his shoulder fatigue and ultimately his all over fatigue and headache. Honestly, Kevin has felt like such crap lately and no one is giving me any answers so this is just my own observation. I also believe depression is playing a roll in his pain and fatigue.
I guess on one point I see the benefit of trying to build up the muscles as the doc suggested, in logic you would think it would help to build endurance. But in theory (my own of course) if the message does not transmitt to those areas, because of cidp or residual damage from gbs the extra work seems counterproductive as it is only overdoing those muscles that do still work. Have you contemplated a scooter on the long days? maybe with more energy you could focus on completing more of what you would like to complete. There just comes a time when we have to give in, we all do it in our own time! If you think about it, it is not actually giving in or falling to submission, it is realizing you need the aide of something, assistance.
Being that the dx is still questionable, has ivig been resurrected again? If you did do a few rounds and saw improvement, the improvement could not be disputed. It seems a small price to pay to be sure if in fact it is cidp. Then any additional damage could be stopped. If there is not improvement, I guess your immune system will be boosted and ready for a trip to the Amazon??!! Any thoughts of going to Dr.L to solidify a dx? Regarding the eyes, does the doc think Miller Fisher? Good luck to you, or thoughts and prayers are with you!!
Dawn Kevies mom
AnonymousApril 16, 2009 at 7:05 pm
I’m going to talk about my fatigue issues rather then overdoing it, because I can push myself to overdo when it is necessary. I’ve gone through three moves in nine months time, packed, unpacked, packed again and I’m now unpacked from my move on April 1st, but will take my time getting organized. This time I was smart instead of saying “ME DO”, I hired myself a housekeeper to help.
I wish I could explain what my fatigue does to me. It is draining. I’m a morning person, that’s when I have the energy to DO and to GO, but by afternoon I’m like a clock winding down. Around three or four o’clock, I want to end my day. I want to sit, take off my ankle boots that work like AFO’S and not get up anymore, not even to answer the phone. That’s when I’d like to be queen for a day.
I wish I knew how to explain what they feel like, but rather then bones or muscles, I feel my fatigue in my eyes. My eyes always feel so tired.
AnonymousApril 17, 2009 at 9:18 am
I am at 18 months with GBS and fatigue is a big issue with me. Every movement and everything I do takes a physical toll on me. If I push myself to much one day I am able to rest the next day or longer if I need to.
Yours may be more cumulative due to you working and not being able to get the rest your body needs on those days you have pushed to hard. A week later when you are still feeling awful your body has not had the rest it needed to recuperate and as jeff has said “listen to your body” you may be damaging those muscles and nerves.
Hope you can take a few less steps and feel better.
AnonymousApril 17, 2009 at 1:55 pm
I suffer from fatigue too if I overdo it then it takes me a few days to recover. Sometimes when I overdo it ( = being very active, sleep and rest less, not eat properly) I get a cold, then it takes me about 10 days to get back to “normal”. When fatigued, I feel a tiredness all over my body but in particular in my eyes and temples. I had the Miller Fisher variant, my throat was the most affected part, it got paralysed, I also had double vision and facial muscle, feet and hands weakness. I found that diet and mood affect my energy levels considerably.
I did a lot of yoga for months after GBs and it really helped me with the fatigue. I haven’t done it regularly for a while now and I feel more and more tired. In my case, if I don’t do enough (gentle) physical exercise I feel more and more tired.
What sometimes depresses me is that I look ‘normal’ and people don’t understand that I’m not the person I used to be. I cannot do as much as I used to before GBS, I have to rest in between activities and pace myself. Sometimes even I forget about the fatigue and I behave as if everything was ok but pay a high price later on. I am stll not back to full time work, I used to do 35 hours a week, now I’m on 20 and next week I’ll start doing 25, I hope it will be ok.
best wishes to all of you
AnonymousApril 17, 2009 at 8:21 pm
Hi there, fatigue is still a big issue for me, almost 2 years after mild GBS. I do not think I could yet work a full time job. The strange thing is that I have an energetic day and feel great that day, then realize the next day that I over did it and the fatigue lasts two or three days. I have found that after a busy day I get many muscle spasms at night which keep me from sleeping well. That might be what causes my extreme fatigue. I end up taking it very easy (and feeling awful) for those fatigue days, and then I’m gradually up and about again. I am still have trouble judging how much I can do without “hitting the wall” and ending up on the couch for a few days. I look pretty good and I am getting more muscular, at long last. But fatigue is a real problem for me.
AnonymousApril 17, 2009 at 9:03 pm
Thanks to all of you for your replies and for sharing your experiences. I think I probably am still trying to do too much–but it hard to know how hard to push to keep going and when to rest. My work is such an essential part of my life. I would shrivel up and die if I could not do this–so I push and so I will keep doing so. These kids did not ask to be sick and they deserve the very best that each one of us can do even if it is hard. Dawn, I do use a scooter at work and, at times, a walker or a cane. It was hard on pride, but if it helps me to keep being here, I am okay with that. And maybe, just a little, it might help the kids to see me with assistive devices to keep going. My heart goes out to these teens who need them also.
Thanks to each of you for your support and for how much it helps to not feel alone in this path. It helps to hear that this fatigue and this struggle are part of GBS from people that know. WithHope
AnonymousApril 18, 2009 at 2:54 am
Those of you that have lived with this for awhile–Do you think that the fatigue gets better over time or do you just think that one eventually learns to adjust to the new limitations in life? Does the fatiguability/fatigue ever settle down or do people just give up hope for the previous normal and accept a new and much smaller definition of “normal”???
AnonymousApril 18, 2009 at 9:39 am
Hi WithHope: As with everything in GBS fatigue issues are variable. Some people get better for a time, then get worse or get better and stay better and some people get worse. I can only answer for myself and say that I had to learn to live within my limitations and let go of any expectation of being able to do what I used to do. If I stay within those limits I do pretty well, and when I go beyond them I always pay the price a day or two later. Fatigue is a mystery, though there are theories about why we have it, there is no known correlation that I have seen between fatigue and degree of nerve damage or severity of GBS. In fact, some studies showed people with mild GBS can have more fatigue than some people with severe GBS, so there are a lot of unknowns. One would expect that as nerves heal fatigue is less, but there is no known correlation between the nerve conduction tests and fatigue. People whose tests are normal may still suffer from fatigue. The only thing I have learned is that if we ignore our fatigue too much we are likely to make it worse. Our body is that best teacher-it does not lie. We can deny it, ignore it and pretend all kinds of things, but when we are tired we are tired. I have worked a lot with the issue of fatigue with myself and my clients who have autoimmune diseases and the best advice I can give is listen to your body. If you push past what it needs you will pay later. If there are any aids, like the scooter, that can help your body go for it. We are people who can no longer afford to let our egos get in the way. Good luck. Jeff
AnonymousApril 18, 2009 at 1:30 pm
Hi WithHope, I am different, in that I am areflexic in all my extremities. I do gentle exercises using 3 lb. weights. On a good day, where I wake up feeling strong, I’ll overdo, and the doctor told me to do light stretches in my feet to avoid contractures but to be careful not to do too much, or I may rupture my tendons. When I get my ivig now I find that sometimes I am really fatigued the next day, but sometimes not for a few days later. The pattern changes. Jeff is right about the ego; I finally started using a scooter in the big stores, like Walmart or my grocery store this winter, and it really makes a difference, and I have found that people are more helpful. Once I learned how to drive it 😀 I’m doing ok-isn’t it surprising how much energy you use doing simple things, like dishes, laundry, etc.? This comes from a woman that used to work 60 hours a week and then come home to a sick hubby and do all the rest-a real supermoman, until one day the neuro diagnosed me with cidp and my whole world stopped-went from superwoman to superdisabled. Not really that bad, but after 9 years I am working on just maintaining. The neuro told me last week what I have lost is permanently gone, so we will try and maintain and not lose anymore. On a good day I continue to overdo and accept the bad days-those are my pajama days. You have a stressful job with the kids, WithHope, but maybe they are what is keeping you going. All my best to you.
AnonymousApril 18, 2009 at 4:48 pm
[QUOTE=WithHope]Those of you that have lived with this for awhile–Do you think that the fatigue gets better over time or do you just think that one eventually learns to adjust to the new limitations in life? Does the fatiguability/fatigue ever settle down or do people just give up hope for the previous normal and accept a new and much smaller definition of “normal”???
I feel that the initial GBS fatigue has increased due to getting older and other health related issues. As I stated on another post, the bottom dropped out last year and it shocked me as I’d “coped” quite well for so many years.
I’ve now realized that I may no longer be able of going non-stop without taking minor breaks throughout the day (or week). I’ve adjusted my life and schedule accordingly and accept each day as my new normal (for that day). 🙂
I hope that made sense.
AnonymousApril 18, 2009 at 11:12 pm
Thanks to all of the replies. Emma is right in that my job keeps me going. When I am working with the kids, I forget everything but trying to take care of them and help them to be better. I turn off pain and pride and get into a “mother hen” mode. Maybe adrenalin keeps me going; I don’t know. I just know that most afternoons after this, the pain and achiness hit with a vengenance to state that I should have done less. I also know that I deny that something is wrong to myself and everyone else a lot and try to pretend that life is normal. I’ve said “I’m doing better” so much that even I have trouble accepting reality. I am so worried that I will be asked to quit my job and this would break my heart. I am worried that I will not do it adequately. I was able to take a position temporarily for 18 months which had less walking involved and when I did not walk as much, was much better. I have resumed my previous job activities a month ago and am discouraged that the additional walking makes me feel as bad as before and walk as badly as before. I had hoped that there was some training–some strengthening. There is probably some, but I am as stubbornheaded as before. I wish I could learn better. WithHope
AnonymousApril 20, 2009 at 5:19 am
Hi WithHope, my symptoms began nearly 1 year ago, May 1 208 and one of my biggest issues has always been the fatigue. For me it does seem to be slowly improving. I believe part of that is because I have ‘given in’ and finally in January began the process of starting to accept this as a limitation that may come and go and that I need to take care of myself if I’m hoping for it to improve. I can push myself when I need to but I pay for it later too. I need so much more sleep than I ever used to and I need to take physical and mental breaks in the day and that allows me to go longer than the 3pm -that’s it I’m done. This seems simple but I was really amazed how much difference it made for me at work. I never used to take a lunch break but now I have to make a point of a 30 minute break to read or do something that is relaxing and restful and then I can usually make it through the rest of the day. I’ve started making a point of 2-3 days a week going to bed really early because I find when I get a lot of extra sleep I feel so much better through the day (but I’m not willing to do it every day!!). I know exactly what you mean about it being frustrating that people don’t really ‘get it’ I feel that way too. I have to remember that even I forget sometimes so how can I expect them to remember? lol I’m working on how to explain it better so that people can understand.
Anyway, I echo the comments above that you need to listen to you body and provide it the rest it needs. If you can recognize what you need and plan your week as much as possible to accommodate your needs, you will be better able to manage. After all, even though we all often try to sprint through life it’s really more the marathon approach we need to take – slow and steady.
Wishing you all the best.
AnonymousApril 20, 2009 at 8:16 am
I’m sorry to see you down and worrying right now. You’re always so supportive to all of us.
While you have the kids at work , I have my Connor. It’s like you just never want to let them down, never let them see you sweat, or hurting or discouraged…we must be strong, we must be the hero that they depend on, and no matter how bad a day is, they are the ones that lift up our most saddest spirits.
I’m glad you have that.
I just wanted to reply and say, I’m sorry for what you’re going thru right now…and, that I understand all of it.
I wish I had more. “Tomorrow is another day”. Chin up 😉
AnonymousApril 20, 2009 at 11:25 am
With so many responses to this original thread it’s clear fatigue is a common denominator with most of us. I read the posts hoping that one would give me the answer to overcoming the fatigue and daily battles we face. But I know that isn’t going to happen.
I read an article recently that really hit home. Although it was written by someone dealing with a family member with cancer, we can all relate to the author’s comment on her “virtual family in cyberspace.”
As with this author, we seem to find consolation coming here and using the site as a sounding board for frustration and celebrations that everyone here understands. Here we can discuss the good news and the bad and know that someone understands. We expose our hearts to friends we’ve never met who are in many ways closer than some people we’ve known for years.
We check in after posting knowing that someone will respond and understand even if there aren’t any definitive answers but will somehow pick us up knowing that somebody cares and feels what we feel.
When we hear “but you look great”, and we know it’s what our family needs to see and hear, we can come here for real support because we know someone feels just like we do. And there lies the comfort.
Better health and better days to all of you,
AnonymousApril 20, 2009 at 3:22 pm
wOW. I just posted about this before reading this and it has helped so much to read this post. I am in that awful place of fatigue taking over my entire being. Stacey described it perfectly when she said it feels like some one poured cement down your throat. JayDee, your wisdom is so reassureing and spot on. Thank you to all who contributed. I guess staying in my jams and going back to sleep isn’t so bad. This is also the day I take my chemo drug and that usually knocks me out.
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