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Living with Polyneuropathy CIDP, GBS, & CMT

Nothing stops


#1

I was diagnosed with GBS 2 and half months ago and feel the same feelings and thoughts run through my mind. My wife and two kids had to move into her moms house due to financial hardships and I was the only one working due to her heart and other problems. Then I got GBS and my worst fear came true of me not being able to provide the little financial support I did. About 2 months in I was seem to be doing good and recovering well and then bam relapse and hospitalized again and it came with a lot more pain and spasms and uncomfortable twitches. My brain tells me I have to help my family duties and I try and then I am down for the count shortly after due to weakness and pain. I have to lay down in the bedroom and listen to my 3 and 11 month old cry want attention and throw fits knowing I can’t physically help and it tears me up and I breakdown to myself. I am on antidepressants but that does not make it all go away cause thoughts race through my head all the time. My wife and mother law get onto to me for trying to help and it makes me feel helpless in my heart and head. I can relate to you and feel the same pains in a sense. It is not what people think that it is something you can turn on and off, give it gas and brake, or push a happy button. Some people are good at pretending but it is still there on the inside. Iit helps discussing it on here and I have found that reading these stories help a little. I am feel alone even though I am not.


#2

Hi Chris - I just wanted to let you know that I hear you. I had GBS as a teenager, and made a nearly full recovery. Then, 2 years ago, at 46, I was diagnosed with CIDP. The worst part for me is not being able to help as much - it is really difficult to be told to stop trying to help, but realistically, in the long run, pushing yourself too hard can be damaging. It sounds like you are a very motivated person who is struggling to get back to normal as soon as possible. I also struggle with feelings of depression and anxiety - major fear of the unknown with regard to recovery, relapse, etc., I wish I had better advice for you - as you said, hearing other people’s experiences have helped me, and getting support from people who know what it feels like is also helpful. If you haven’t gotten in touch with the GBS/ CIDP Foundation, I highly recommend it - they have given me so much helpful information. They may also have some local support groups. There is also a Facebook group I belong to called GBS/ CIDP Exercisers. People on that page tend to be very uplifting and caring of one another. So sorry you are struggling right now.


#3

Hi Chris. I had GBS back in June of 2014. I was doing great after a few months then had a pretty tough relapse of symptoms 7 months later following a sinus infection. It was not as bad as the first but pretty close especially since I thought I was on the road to recovery. You can only do what you can do with this and you have to understand and forgive yourself. You didn’t ask for this and it’s so limiting at times. My hope is that you continue to heal but give yourself a break along the way. Children that small can’t understand but they will know you were there even if you could not participate like you wanted to when they get older. I just know down the road you will be stronger and able to step back in to support others again. This happened for me and I would have never believed it then. Keep moving forward even when you have to step back and know that others have made it and you will too! Good luck to you! You are definitely not alone!!