first posting day at the forums
AnonymousJanuary 19, 2009 at 9:33 pm
Hi there, this is my first day to post something here. I was hesitating to join because my story sounds so mild compared to what so many of you have been through. My symptoms started May 1, 2008, numbness, muscle weakness and intense exhaustion progressed over a couple of weeks. My neurologist said I had a very rare strain of GBS, mild. I spent 1 week in hospital with IVIG treatment. Spent a couple of months in bed and then was sent back to part time work which now seems like it was way too soon.
When I saw my neurologist in September, she said I was recovered-amazing -and it was a joyous day. However, when I described to her the intense exhaustion and related symptoms that I was still experiencing intently, she didn’t really offer me any information. I was recovered and so she didn’t need to see me again.
I am still really struggling with getting back to ‘normal’. I have some times when I think I’m ok and other days when I don’t know how to make it through the day. I have 2 little boys (2 & 4) which makes every day busy. The doctor just said to go back to normal life and I just can’t do what I used to do. I’ve been travelling this road alone for several months and have realized I need some help to gain some peace of mind.
I see from some other posts that this exhaustion is not an uncommon thing. Does everyone go through this? Why does it seem strange to the doctor?
Looking for someone who understands, 🙂
AnonymousJanuary 19, 2009 at 9:46 pm
I can totally relate to what you are saying- it sounds exactly like me! I was diagnosed in September of 2008 and have made an amazing recovery as well (we are blessed!) except for the lingering fatigue. I, too, have a little one (22 months old) and I am definitely not the person I was. My neurologist is wonderful, but thinks my complaints are “small potatoes.” He had another severe patient call me to remind me of how well I am doing…..
My advice to you is to rest whenever and whereever you can- If your kids are napping, then you nap. This helps me alot and I NEVER had napped in my life before this. Also, I have found the natural Emergen-C drinks helpful. They seem to give me a little “boost” be it psychological or not….
Try to remind your significant other that you are not back to normal yet too… I think this has been another problem at least for me… since we look “normal” everyone expects us to resume to our pre-GBS status and that is a difficult act to follow, when you feel as fatigued as I do all the time. Good luck to you and your family… Reading all of these posts really makes me feel fortunate to have recovered the way I have and I am sure you feel the same… Tracy
AnonymousJanuary 19, 2009 at 10:24 pm
Thanks so much for your post. It is so great to have someone understand what you are describing! You are right I do feel so fortunate and I know that I am and sounds like you are too. We are so very blessed. I can’t believe your neurologist had some one call you! That doesn’t sound like a good thing to me…
For so long I’ve been thinking, I’m so much better than I was, I’m so fortunate, just get on with life type of thing. But you are so right, everyone expects you are just back to normal and life is just not the same as it used to be.
AnonymousJanuary 19, 2009 at 11:24 pm
Fatigue is one of the least appreciated, but most significant consequences of GBS. It does not affect everyone. A lot of neurologists (including mine) do not believe that fatigue is part of GBS. There are a number of good medical papers on the subject and more and more doctors are coming to appreciate it. The medical papers state that the amount of fatigue does not match up with (correlate) with the degree of severity of the GBS. I also had a “mild” case, but tremendous fatigue. Now almost two years later, the fatigue is easing up it seems, but it was really, really tough for a long time and still is not easy. Please look at the notes from the Symposium about fatigue (in the Main Forum under Notes on GBS and CIDP).
WithHope for a cure of these diseases
January 20, 2009 at 11:02 am
Glad you posted, you will find many kind people here to help you medically and emotionally. My 12 y/o has cidp so I am limited with gbs knowledge, (as this was our second dx and we were later re dx with cidp) Keep positive and rest when you can. Best wishes1
Dawn Kevies mom
AnonymousJanuary 20, 2009 at 11:57 am
So sorry you felt alone with this, you are not alone now.
Fatigue is a big issue with GBS. I have had GBS since Oct. 07.
I would sleep hours during the day and evening and still go to bed
and sleep at bedtime.
I gradually started sleeping less and less. I am now able to go some
days without sleeping or make do with a nap of an hour or less.
I don’t know how you could be getting the rest or sleep your body
needs with two small boys and working part time.
Google “The Spoon Theory”, But You Don’t Look Sick.
I don’t have the link for it but it has been discussed on the forum.
You may want to print it and give copies to family and friends.
This might help them understand your fatigue.
My family understood my fatigue as I had a Dr. that said to
[B]REST [/B]as much as you can.
AnonymousJanuary 21, 2009 at 8:40 pm
Thank you all so much for your comments and encouragement. The spoon theory is a good explanation to share that’s for sure. It’s so hard to explain that feeling to people and yet it can be so frustrating when no one seems to ‘get it’. It’s hard enough to get it yourself let alone figure out how to communicate it where others can really understand.
I’ve also read the notes on fatigue from the symposium. Thanks to such a kind hearted soul for sharing all that information. I found it helpful and alleviated a couple of my concerns as well.
Thanks for welcoming me here. I really appreciate your encouragement and kind words. God bless each one of you. Julie
AnonymousJanuary 21, 2009 at 10:43 pm
My first bout with GBS left me exhausted although it was a mild case. I continued teaching but had to take one or sometimes two days off to get my strength back. When I did go in, I had to teach and make the plans for the substitute. The students did not suffer because of this. However, my superintendent gave me a poor review because of the days I missed. When I showed him my diagnosis, he said that if I weren’t in the hospital, then I should be at work. Grrrrrrrrrrrrrr…….maybe someday GBS will be well-known so we can get the empathy we deserve.
I took adrenal extract and that took the pain away and brought down my blood pressure. I think that GBS is when we overload our body – whether it be with an immunization or stress. The adrenal glands are important in this instance. So I supported them with the glandulars I took. I took them during my second bout of GBS and I am pain free. I healed alot faster this time although it was alot worse than the first time.
AnonymousJanuary 22, 2009 at 6:13 am
Hello Stilltired and welcome to the forum
I had the Miller Fisher variant of GBS in May 08, my neurologist told me that I had a very good recovery, the only residuals are fatigue and my voice not being back to normal (the throat was the most affected part of my body and my voice is slowly coming back).
About the fatigue, I agree with the others, rest whenever you can and get plenty of sleep. Also, try to have a healthy diet and do some exercise if you can, yoga gives you more energy and swimming is also very good (but you’re likely to feel exhausted after a swimming session!), walking also has lots of benefits.
January 22, 2009 at 11:14 pm
Yep fatigue is awful. I am almost 3 years post onset and still have bouts of tiredness. Although it is so much better than when I was first sick. You are still new to this and mild or not, the exhaustion is still there. It will ease with time, how much time no one knows. Give yourself time to heal because you may be “recovered” but your body is still healing. Some days will be better than others, and you will quickly learn your limits. Those limits will change as time goes on and there will come a day when you realize you didnt need that long afternoon nap, or it is shorter than it used to be. It is a slow process but things will get better.
AnonymousJanuary 26, 2009 at 9:08 pm
You guys are awesome! I can’t tell you what a difference has happened in my life in the last couple of weeks and the people here at the forum have really had a part in that. I have been pushing myself and expecting myself to be what I was pre GBS and feeling so guilty and really stressing myself that much more because I wasn’t keeping up (at all). I’m going back to my doctor this week to explain to her what I wish she could have explained to me 5 months ago and hope that she supports me. In the mean time, I’m going to refocus my life so that I can take better care of myself and learn how to tell people what is going on with me. The spoon theory was so helpful – even my husband wasn’t really understanding what I was going through and that story helped him so much. I’m planning on sharing it with others to help them understand why things are different now. Thank you all for your encouragement and support on this journey.
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