AnonymousMay 8, 2006 at 4:35 am
This is my first real post here. I have followed your threads with great interest, but I have been shy 😉 about posting. I would like to ask a couple questions to see if anyone else has had similar experiences with Guillain-Barré.
Here is my story:
When I went to my doctor with flu-like symptoms, he diagnosed me with diabetes and said that the tingling in my hands and feet were caused by the diabetes and sent me home.
Two days later, I was stricken with Guillain-Barré. This was on April 1, 2005 and I was in ICU for thirty-four days. Like most of the rest of you who post here, I communicated by blinking and was on a ventilator and feeding tube for weeks. I was given Plasmapheresis treatments and I was awake for six days straight before pain management was able to find the right cocktail of drugs to control my pain. After that, I was in a rehabilitation hospital until the end of June 2005. I had to learn all kinds of motor skills again. Then I came home to watch the walls of my home close in on me for the next six months. I also ran out of visits to my physical therapist, only to find out that my insurance company decides if and when I can go back to therapy. My doctors allowed me to return to work in a wheelchair on January 1, 2006. I have progressed from the wheelchair, to a walker, and finally to just a cane.
I had Cerebral Palsy as a preexisting medical condition before coming down with Guillain-Barré. Is my CP slowing down my healing?
As of now, I get very tired, very fast and have very little stamina. I still have problems with moderate pain in my lower extremities, mostly with my feet. I have a hyper-sensitivity to touch and numbness in my feet and hands. I currently have much lowered sense of feeling from large areas of my skin. I also keep a slight headache most of the time
I know I have come a long way in a year, but will I always have some leftovers from my Guillain-Barré? The doctors seem to have left me to find ways to cope on my own now, but I wonder if I will ever be free of pain or walk unaided again? I can walk for very short distances, but the pain in my feet will force me to stop. There are also times when my muscles will refuse to move, and just quiver. This happens mostly when I have to make “quick” movements.
I feel I should be much better by now and every single time I feel sick, I have this overwhelming dread that it might be my old friend “Guillain-Barré” back for another visit. 😮 I feel like I must not be doing enough, because my recuperation seems to have slowed to a crawl. Am I asking for too much, too soon?
Any suggestions would be greatly appreciated, and thanks for all your help!
AnonymousMay 8, 2006 at 9:36 am
One suggestion I have is to start managing your energy. Keep a budget in your head of energy expended versus rest. Almost every problem you described can be made worse by not getting enough rest. Most people with GBS require 9 to 10 and a half hours of sleep a night. Seven hours of sleep will just burn you out. Avoid overstimulation, like shopping or talking to annoying in-laws. This doesn’t mean you can’t go shopping. It means you go shopping and plan nothing else but rest that day. Your nerves are just leaking energy. You don’t have the energy to live like you did before GBS. You can get real close to a normal life but you need to manage how you arrange your day.
Good luck and let us know how you are doing.
AnonymousMay 8, 2006 at 12:29 pm
Bwalker Welcome to the Family
Around here we call GBS “[B]Get Better Slowly”.[/B]
There just is no rushing this syndrome to healing faster. You will have to manage your energy. You will know when to rest and most GBSERS/CIDPERS
need tons of rest. you wil learn when not to push yourself beyond what you are capable of too. One day at a time, one thing at a time, that’s all you can do for yourself.
Wishing you the best and take care. 🙂
AnonymousMay 9, 2006 at 7:01 pm
It’s getting late for me so can hardly talk about taking it easy and getting plenty of rest. I’ve been on the go since 6.30 this morning.
I was due to log off an hour ago but dropped in to see what’s going on here while us Englanders were supposed to be sleeping.
Anyway, I contracted GBS 1st April ’05 too; well that’s when I was admitted into hospital. I was lucky not to be ventilated but that’s as far as the luck went.
Lee gave some very good advice on rest, I find that gentle stretching initially got me moving, though fatigue would hit very quickly. I tried to do a little more each day, but always stopped after my relapse, before becoming tired. At first I managed 10 reps with a 1lb dumbbell and sleeping for two hours. Very slowly moving on to leg lifts and balancing etc.
Like you, a year down the line, I still have nerve pain in my feet when I do too much or get stressed. Lately I manage my pain by staying calm and doing yoga. Stretching and holding positions, for me, really eases the hot sand feeling in my feet. I still have trouble when I move fast.
I plan my day so that I don’t take on too many tasks in a day. If I’m going to be busy in the morning, I take it easy in the afternoon, and vice versa. I know that life doesn’t always lend a hand when we need more rest than the average man, but it’s very important to keep the work/rest ratio in balance.
I’m sure that the added strain of Cerebral Palsy will take its toll on you, but your determination got you this far. If you keep up the good work and get that extra rest you need now that you are more mobile, there’s no reason why you can’t make that extra mile you’re aiming for.
Well done for your recovery to date. Good luck with your quest for future fitness.
Take it easy.
AnonymousMay 10, 2006 at 5:11 am
Sorry if I’m wrong but there seems to be a problem with the post from Scott J bellow.
I clicked on the link for his Miller Fisher story and at first it looked pretty good.
I only had chance to read the first few lines on the opening page and my screen changed to a not responding page.
I was not able to close this page or go back to the forum. I had to reboot my pc to get back on line.
If this is a problem with my pc and the programme that runs the above-mentioned link, then I’m sorry but if the link causes problems for anyone else, I think it only fair to warn you.
I’ve run out of time now after messing about trying to get back on line, so will post again later.
Take it easy.
AnonymousMay 10, 2006 at 11:36 pm
Hey bwalker, I was diagnosed in late Dec 2005 with GBS and had a 2 week stay in a local hospital. I was lucky to be referred to a nuerologist that seen about a dozen cases before, so he knew what to look for and how to treat fast. I found on the previous forum that a few doctors suggested vitamin B and protein for recovery. I take a Multi B100, fish oil, a Biotin (another B vitiamin) a day and noticed the pain decreased significately. I still get pain in my hands, arms, feet and legs but its not as bad and normally during the evening hours. Cool water such as a pool to soak your feet in helped relieve the pain. I too had weeks on end that I thought I had peeked but remember that if your body is not consintrating on your motor nerves, its rebuilding your sensory nerves but it does take time. Ask your doctor and best of luck.
AnonymousMay 11, 2006 at 2:41 am
Like everyone has said you must learn to manage your energy usage. It will take time to get better. You are only 12 months on and it sounds like you are doing well. You will continue to get better month by month. Keep your chin up and stay positive.
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