GBS and walking. Barb (BJH)

    • Anonymous
      May 16, 2006 at 5:48 pm

      Dear Barb

      Following on from your post on the ‘Who’s missing? thread – yes, the walker you use sounds like what I would call a Zimmer frame. You mentioned you also use forearm crutches at times. To get to that stage is, I would think, a sign of improvement.

      You mentioned that endurance is an issue. To be honest, I think it is bound to be, with GBS. Whilst your body repairs itself, fatigue is pretty much the number one (and pain is up there too) and just using a walker and crutches is tiring. Crutches, when you are basically well, are tiring (I was on them when I burnt my foot) but to use them after GBS does, to my mind, make endurance a definite issue.

      Why not post your story – because everyone is a bit different. And everyone here knows what you are talking about – it’s a relief – not having to explain every little thing, simply being: understood.

    • Anonymous
      May 16, 2006 at 6:38 pm

      Hi Barb,
      I have CIDP, but using a walker or wheelchair is still the same. I am still semi dependent on a wheelchair, but I can now use just the walker when I go on short trips like Dr.’s appt. The wheels are for food shopping. No one ever showed me how to use the walker, but I have good instincts and did well learning myself. Ask questions and I’ll try to tell you what I know.

    • Anonymous
      May 16, 2006 at 8:08 pm

      Thank you, Teresa, for your encouraging words. Today was a warm sunny day and I walked outside with the crutches and with hubby Ken (yes, that’s his name) — it felt very good!

      My story started with extreme pain in my left leg. Since I have a hip replacement in that leg, I assumed it was the cause. A trip to the ER proved the hip was okay and I was sent home. The next day the pain was in both legs and I couldn’t walk. This time the ER found that I had a systemtic staph infection, which almost did me in. Drs. didn’t concentrate on the paralysis until after I was stabilized. I remember having a CAT scan, MRI and many lab tests. Fortunately, I didn’t need a respirator. However, I had IV feeding, bags of antibiotics, units of blood, a tube down my throat and eventually more than one IVig. I never did have a lumbar test but had two EMGs. I was in the ICU for 11 days, hospital a month and rehab 3 months. While in rehab I also had Shingles.

      The infectious disease doctor never did determine how I got the staph infection and all my doctors said they had never heard of a connection between this particular staph and GBS.

      The paralysis stopped at my neck. My arms started coming back fairly quickly. At first a hoist was used to get me up. It was such a thrill when I first managed to do a standing transfer. For quite awhile, my left leg needed a cable type device to keep it in line. That is gone now, but I still use a plastice brace on my foot and leg.

      I’ve had both occupational and physical therapy since coming home. Now physical therapy continues twice a week and Ken and I work together on the other days. All of this leaves me with the greatest admiration for PTs because they got me to do what I never thought I could!

      I still have the sharp pains in my legs and feet. Lyrica helps me with that, but there are times when I have to add Vicidin. And, of course, I take a mood elevator! 🙂

      I’m wondering if anyone has a problem with rashes?

      Gotta go. Thanks so much for being there!

    • Anonymous
      May 17, 2006 at 9:36 am


      rashes can be part of gbs. as w all w time they will go away. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • May 17, 2006 at 5:06 pm

      I had rashes about 5years before I came down with GBS, I still get them, but I accounted it to stress. This is the first I’ve heard about any possible connection. I would be interested how many others out there had this problem and when the rash started.


    • Anonymous
      May 18, 2006 at 12:36 am

      I had a rash consistently for 10 months before I was dx. Throughout my illness the rash became a last priority and it semed to go away (I don’t know if any of the treatments I took had anything to do with its disappearance or not). Two months ago the rash came back, which worries me because I really think there is a connection. I have had a number of doctors and dermatologist look at it and noone seems to know exactly what it is.

      I would be very interested to hear others responses on this subject.