Question about GBS symptom: extreme fatigue
AnonymousFebruary 15, 2007 at 7:52 pm
Hey all, I am new to the forum. I was diagnosed with miled GBS on 1/29/07. My worst symptoms to date have been extreme numbness in my legs below the knees and numb fingertips. After a 5 day hospital stay for treatment with IV-IG I was sent home. I have been on short term disability ever since (I have a lot of trouble walking and typing).
My physical symptoms have been lessening over the past few weeks (numbness is now only in my ankles and feet, although my hands have shown no improvement). Despite being essentially physically inactive, however, I am finding that I am getting extremely fatigued. I used to average about ~6-7 hours of sllep after a very active day (work full time, go to school at night) and would wake up rested. Since I have been home from the hospital, I have been averaging 11-13 hours of sleep per night, and I have to force myself out of bed.
Is this type of fatigue normal to GBS? I feel as though I am getting steadily better except with respect to fatigue.
AnonymousFebruary 15, 2007 at 9:02 pm
Nik, keep on reading through the past threads and posts and you’ll find that fatigue is one risidual that hangs on a long time. Sounds like you are progressing well other wise, especially since you were diagnosed in January. It takes a long time to get used to the “new” stuff; numbness, tingling, fatigue etc. Read on…this site is like home.
Take care, listen to your body when it’s tired, be well.
AnonymousFebruary 15, 2007 at 11:05 pm
I was Dx 1/8/o7 and my main problem is FATIGUE also. It is improving but I can’t drive yet so can’t go back to work. But there is no way I could work an 11 hour day on my feet yet. I’m just now able to take care of myself and help with my small children. My husband had to take a Family Medical Leave. From everybody, and what I have read we have to be patient with our bodies while we remylinate and gain back strenth. I’m sorry this happened to you too- I too am frustrated. But I am alive and improving and so glad I can live to see my children grow up. Please let others help(hard for me too). Dr. Shawn
AnonymousFebruary 16, 2007 at 9:39 am
Nik I have a mild case CIDP and now just found out I have Raynaud disease. I work 39hrs a week and some days find it tougher then others depending on the job I am given (production line worker). I have people really pissed because I had to change jobs sometimes and that means taking a easier job away from them. Also with so many employees working there I get lots of people giving me dirty looks or bad mouthing people on lighter duties. I tell them I ran out of steam but people are not to happy.
I have very high seniority there but it doesn’t matter to some. Now this week I found out I have Raynaud disease and when other people find out my hands are giving me trouble to do my job they will say the same thing they said when they found out I had CIDP. Some people think I am making this up but I have DRs telling me this. So I am not making this up.
It’s so frustrating somedays to keep a positive attitude. But I am trying to hang in there.
Fatigue is not lauging matter and I sometimes would sleep 11-13 hours before I got CIDP.
Rest is very important and a chance for your body to heal.
Don’t push yourself to please others. Think of yourself and what you need to help your recovery.
AnonymousFebruary 16, 2007 at 10:15 am
Welcome to your new home and new friends. I am 10 years post – yes, that is a long time, and I still deal with fatigue to this day. Somehow, I work 40 hours a week – basically not a very physically demanding job, but toward the end of the week, like today, I am exhausted and so look forward to sleeping through the weekend. It is hard emotionally to deal with this, but with the help and understanding of friends here, I get through another week.
So take care of yourself physically and emotionally. Rest, rest and more rest is sooooo important.
Looking forward to hearing more from you!
AnonymousFebruary 16, 2007 at 10:52 am
Chrissy hit the nail on the head. Rest, rest, rest …… oh, and did I say rest? It is so important for you to realize that you cannot push yourself too hard, this could be counterproductive. Fatigue and pain are the worst residuals of GBS. Unfortunately fatigue has been my number one residual for 21 years now. Dont let that discourage you, because you are still newly diagnosed and are still in the first month, so things are still at their worst, in your case fatigue. Important thing to remember is that this is not a ‘normal’ illness, and the fatigue is there as a reminder that you [I]need[/I] that rest.
Are you doing any physical therapy at the moment?
AnonymousFebruary 16, 2007 at 10:28 pm
I simply add my voice to what others have already said.
By the way, you had a ‘mild’ case of GBS but were hospitalised and had IVIG? Oh, that is not a mild case. Mild cases of GBS don’t get IVIG.
You were diagnosed on Jan 29th? Seriously? Do you know that GBS ordinarily hits its worst in 3 to 4 weeks from onset? So you were diagnosed less than 3 weeks ago.
I am actually amazed that you are here now asking about residual fatigue because I think that you are doing brilliantly for GBS.
You wondered, having been diagnosed on Jan 29th, if after 11-13 hours of sleep, the fatigue you feel is normal? Personally, I don’t think so – I happen to think you are doing really well and may need to rethink things. What I mean is, if you slept a long longer than you do and woke with the same fatigue that you are experiencing now, I would think that that was fairly normal.
That you can manage to force yourself out of the bed in the morning is amazing. Like Suzanne, I don’t think it’s a good idea but I do think it is amazing that you can do it.
Pushing yourself too hard when you’ve had the flu is not a good idea. Pushing too hard after GBS is a really bad idea. I’m not trying to be a smarty-pants – I speak from experience and from reading these Forums. Forcing the issue will usually get you one outcome – back in the bed, big time.
We are always hardest on ourselves. Why not try treating yourself as you would treat your best friend? Be a bit good to yourself and remember that GBS also stands for Getting Better Slowly.
To put it another way – take it slow, and get better!
AnonymousFebruary 16, 2007 at 10:44 pm
I had a mild case of GBS in August 2006. I was hospitalized for 5 days. Overwhelming fatigue was a big factor for me for about 4 months. Now I need 8-10 hours of sleep every night, but the overwhelming fatigue that hit me at first has gradually subsided. You will know when you need to rest. Be sure to take it easy!! 🙂
You must be logged in to reply to this topic.