AnonymousDecember 27, 2009 at 8:14 am
Hi Guys, Been a couple years since I’ve shown my smiling face around here, but I’ve got a question that I’d like to ask.
My backround: Contracted GBS mid-November ’99, age 45, male. Within a week of onset I was bedridden. At peak I was almost completely paralyzed below the waist, had only gross motor functions in my upper limbs, and was very close to being put on a respirator. Was back to full-time work as a cabinet-maker in six months and a week. At about two years after the only residuals I had were some numb spots on my upper arms and upper thighs and some tingling/numbness in my toes. Those have largely disappeared in the intervening years.
The question: I’ve recently begun to experience some sharp, transient pains in my feet reminiscent of the nerve pain I had in my feet and legs during the early stages of recovery. Does this sound familiar to anyone? Has anyone had returning residuals years after? It is by no means debilitating, but I prefer to be cautious if it can avert worse future problems.
AnonymousDecember 27, 2009 at 10:08 am
I had GBS in 1963 when I was 24 years old. For at least 25 years I thought I had recovered completely and that everyone else did, too. I ran in several short, fun foot races, learned how to wind surf, and did several very tiring vacations. The I began to experience numbness in my feet, and ankles, and fatigue (which came earlier but I didn’t realize it was connected to GBS). Now, 46 years later, I have all of this and more. As you siad, it isn’t that you can’t deal with it. In fact, once I knew that what was going on was likely related to GBS it removed, for me, the worry about it being something else – or another bout of GBS. Like you I was close to being on a ventilator, except that in 1963, it would have been an iron lung, which sat in my hospital room like a threat – “if you don’t behave, you get to go in the respirator.” Thankfully, I never had to use it.
Now, at age 70, I get fatigued quickly with any physical activity, more quickly yet, if I get warm at the same time. I have the most energy in the morning, and wear down as the day progresses. Whenever possible, I try to have only one outing in a day; I rest for 30 minutes every day, to straighten my back and just relax. I have three different back problems so I use a wheelchair to go anywhere where I have to walk far or stand for very long. For shorter trips – such as into and out of one store – I use a walker and, in summer I walk every day for the exercise. I was up to 14 houses and back when winter arrived.
My husband does all the cooking and shopping as I find it wears me out, especially if I have to stand at the stove to prepare something. I think the up-side of all this is the ability we gain to adapt to changes in our physical abilities and limitations. I also think that we learn to appreciate things we can do that others take for granted. I enjoy every day and can hardly wait to get out of bed – which I do, usually by 5:30 in the morning. Today I slept in until 5:50 and felt like I had missed something more than 20 minutes on the clock.
We have a support group here that has been meeting for almost 20 years. I would say that what you describe is very common among the members of our group. All the best in the future and for the coming new year.
AnonymousDecember 27, 2009 at 9:23 pm
Hi Tom: Sounds like you made a great initial recovery which is a great blessing. I have done a lot of research on residuals with individuals as well as studying the findings researchers have posted and, unfortunately, residuals certainly can and do come back years later. Not for everyone, but for a great many people. It may have to do with overdoing things or it can have to do with the aging process, as nerves sometimes seem to loose the healing that they have gained, or other nerves which have worked twice as hard for years to make up for damaged nerves finally begin to show the effects of their efforts. Some people argue that there is a post gbs syndrome like the post-polio syndrome. But whatever the reason people who have had no residuals for years can suddenly get them. If it is disturbing enough or you show increasing weakness you should probably see a neurologist just to make sure nothing new is going on, but sounds like residuals to me.
Maureen-I know where you are coming from. I will be 64 shortly and had GBS 5 years ago. Fatigue is very bothersome and I have to be careful what I do. I spent five days with my son in California last week and the day after I flew back did nothing but sleep-same the next day. I am recovered but the fatigue can get very upsetting. I have another autoimmune disease that adds to it as well, so I work very hard at enjoying what I can do and enjoying the rests I must take to keep going.
AnonymousJanuary 1, 2010 at 7:33 pm
I too went for 25 years with only a few residuals, then I began to get the tingling sensations in my feet, terrible fatigue, muscle pain and weakness, etc. The neurologist ran many tests and said I had nerve damage from the GBS I had in 1976 and that I was suffering from a post-GBS syndrome. It has only been in recent years that some doctors have acknowledged a post-GBS syndrome. Many people on this site have suffered residuals many years after their initial attack.
AnonymousJanuary 14, 2010 at 2:29 pm
I, too, just returned to the forum after a couple of years. I contacted GBS in 2001, and I have residuals of numbness and pain from the knees down, and some in both arms. I was actually hours from being put on a ventilator. I was paralyzed from the neck down, and I was in the hospital 9 weeks. I choose not to take medication for the residuals. The discomfort never leaves, but sometimes is worse than the day before. I, too, believe that residuals can get worse with fatigue and simply overdoing things. I probably have a 90% recovery which is wonderful, but I am still very cautious . The nurse who administered the plasma pheresis(she works only with that) reminded me that stress is a huge factor in GBS recovery, and I personally feel I have more problems when that is a major stress factor in my life along with overdoing things. Awareness is so important with recovery and every day life. Good luck! elayne
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