Looking for reassurance!

    • Anonymous
      May 13, 2010 at 10:16 am

      I was diagnosed with gbs Nov 2007 spent nearly 2 months in hospital/physio wing. Had a “relapse” (?) last February and spent another 2 months in hospital. Dr’s tell me gbs should not reoccur. I am walking again normally and try to live my regular, busy life (I have 6 children) but I am plagued by constant fatigue, muscle pain and pins and needles sensations in my hands and feet. It takes me a long time to recover from infections and I seem much more prone to them. Some days I feel completely overwhelmed and frustrated by my symptoms and the fact that I don’t get many answers to my questions. Is this a normal part of recovery? Will I always have these issues? Has anyone else experienced these symptoms? Any information would be much appreciated. Thanks.

    • Anonymous
      May 13, 2010 at 3:21 pm

      Welcome Mariel!
      One thing about this forum is that you will get warm, supportive folks who are willing to share their experiences. I worry so much that I will relapse. The doctors claim we won’t relapse but then again these are the same men who tell us we will be “over” GBS in a year. I am now 5 months into this journey and the best part of it has been this forum and the open honest responses we get here. I was diagnosed on Dec. 25th and spent 2 months in the hospital – first on the neuro ward, then in a rehab hospital. I learned humility there and I am trying hard to remember those lessons. Today, for the first time in several weeks I had to lie down and take a nap during the morning. That upset me – I thought I had moved past needing morning naps. But then I remembered how excited I was when I was able to put my own shirt on for the first time. I’ve come so far in 5 months. It is easy to get angry about what we’ve been dealt. I tell my Mom that this is supposed to be character building, but I was enough of a character before – didn’t think I needed to be built! Ah, well. I am concerned about your relapse. Never, never do I want to do this again, but I salute you that you were able to do it. Hold on, share your ups and downs here and know that there are a lot of people here to support you

    • Anonymous
      May 14, 2010 at 10:54 am


      I am a mother of 2 under 4 and working full time and I was exhausted before I had GBS. 😉 If you have 6 children, that is probably contributing. Your body needs a lot time to rest and take it easy and life does not allow this. Your body and you have been through a lot. It is totally normal to have these issues and feelings. This forum has been a lifesaver for me because people not going through this cannot relate and they think that we are “normal” because we look normal. My husband just told me yesterday that his family was asking last weekend, “well, what is going on?” “shouldn’t she be done being sick?” He tried to tell them it is like having the flu, morning sickness and carpal tunnel for 6 months. Pretty close. I told him he should have thrown in jet lag for the fatigue for good measure.;) 6 months out and I expected to be good as new. I am a lot better than I was in the beginning, but I am plagued with various issues daily, and I have come to accept that this may be the case for a long time. Don’t give up and keep up the fight. And try to rest as much as you possibly can….

    • Anonymous
      June 1, 2010 at 10:46 pm

      I will start this off by wishing you all the best!
      everything everyone on here has said is true, this forum is the best thing iv found since i got GBS back in 2006.

      everything ur experiencing is normal im 4 years in to my recovery and i still nap in the afternoons, have alot of residual pain and i often get infections that seem to hit me like a tone of bricks! some days will be easier then others and u need to smile and enjoy the easy moments..keeping positive is hard sometimes when ur looking for answers and feel ur a dog chasing ur own tail in circles…

      Never give up because the answers are out there somewhere and someone will eventually be able to point u in the right direction. i hope i can help. if thers anything elce ud like to talk about one on one or just a friendly chatt id loveto here from u 🙂

      take care of yourself, ur kids need u too