Help Please, I need to know if this is Post GBS and normal or possibly a relapse?

    • Anonymous
      August 3, 2006 at 10:13 am

      Posted this in Cymbalta also, I took Cymbalta since last September….I’m trying to wean from it. Gained 40 lbs. Down to 30 mg for week now and the pain and tingling is pretty intense. Still at 30 but think I will go back up to 60. I am having no luck in getting a neuro appt. either. Just a little background…I was diagnosed in 1979 at 18, spent 4 months in ICU, put in an iron lung for 6 weeks, as my mother did not want me to have a trach scar and Doc thought it would be “therapeutic”. (Made me severely claustrophobic) Everything paralyzed, couldn’t talk couldn’t eat couldn’t potty couldn’t blink couldn’t move, heart stopped twice (watched myself flat line), pretty bad. At 12 weeks started to get some feeling back, but feeling was intense, what I called, Bone Pain. Gave me Darvocet, made me relapse and stop breathing and heart stopped again. Went to no pain meds, lost mind. Only relief was in Hubbard tank. But at 18, I was in great shape, pre-GBS, so I was determined to get it back. 2 years of PT, OT and ST. Felt like I could take on the world and I did, Married, 2 BA’s, 1 MA, high pressure advertising career. But for the next 25 years, I spent a lot of time telling doctors who insisted that everytime something was wrong it was related to GBS, that infertility, weight gain, phantom foot pain and depression were not related. Even had myself convinced….Well, I did the denial and procrastination thing very well. But last year, I started this weight loss and workout program, needed to lose 60 lbs. Sugar was up, did what I thought was a good thing, Weight Watchers and walking 3-5 miles a day with hands weights, first 2.5 then 5 lb weights. Lost 60 lbs. but started having very severe aches in my arms with hot poker shooting pains from shoulder to fingers, feet hurt too, but they always did so I didn’t think much of it, just got in the hot tub after each workout. Water is still my savior. Here is the rub, went to PC doc after I intellectualized all the pain and self diagnosed (as usual) and explained that I thought it could be a)post gbs b) pinched nerves (bad neck) or c)carpal tunnel. Actually I think it is a combination of all 3. What I need to clear up is whether this is Post GBS? So I can tell what needs to be done to fix the neck and carpal tunnel. Doc prescribed Cymbalta, after NCV/EMG ( Does everyone hate those as much as me? I think they are barbaric and don’t you think that in 20 years they would have come up with a new way to get that info. I think the machine they used was exactly the same kind they used in 1979) Well surprise, surprise, very bad numbers. Nerve conduction is way off. Okay so here’s the rub, Why all of sudden did this get worse! Is it possible to relapse after 25 years? Why isn’t it getting better with rest? And how do I fix it besides Drugs? Help????? Nat

    • Anonymous
      August 3, 2006 at 10:19 am

      Just wanted to let you know that since last year and being on Cymbalta, I have lost more sensation in my hands, all fingertips have that novacaine, tingly feeling that started the GBS and also now my feet and left calf are doing it too…..I thought Cymbalta was doing it. But it actually is worse this past week, with coming down from 60 to 30mg of Cymbalta. N

    • Anonymous
      August 3, 2006 at 11:23 am


      Im sorry, I never did get back to you earlier this week, will send you a pm now.:(

    • Anonymous
      August 3, 2006 at 5:39 pm

      nat, it is possible to relapse. maybe your body is trying to tell you to slow down-now! i have relapsed 4 times, not do to over doing it only, rest is an important part of the recovery period that never ends. i am exhausted just reading what you have been doing, i can’t speak as a dr but my guess is relapse. i have had neck problems, wrist problems and they don’t feel the same as gbs. there is a difference in me anyway.
      i hate to say this but trying to go without the meds isn’t the best thing right now-you need to get control of your body back first then go off the meds. make sure you read the side effects of the meds you take. they can have a little to do with your problems too. the body can become resistant to meds. can you take lyrica or neurontin for the pain? have you had your thyroid levels checked recently? take care.

    • Anonymous
      August 3, 2006 at 5:58 pm

      Yes I have had my thyroid checked yearly as I have a nonfunctioning one. I take 2 and 2.5 on alternate days of synthroid. Remember back in 79, they thought prednisone would help the nerves regenerate. Well I took it for 8 years, at 80-160 mg each day. Took myself off it for a year b4 telling PCP. Then didn’t lose any weight and gained still, nurse practitioner at office suggested, duhhh, thyroid. Yep, burned it out. And osteoporosis too.
      I love my body, I love my body, I love my body. Repeating makes us believe it right?