CIDP excerbation

    • Anonymous
      March 21, 2007 at 1:16 am

      Hi, I have had a dx of cidp for over a year now. i had been treated with ivig biweekly, neurontin, cellcept, and cymbalta to keep the severe symptoms at bay and 2mg of klonopin at bed time.
      However, my question is to those of you who have notice an increase in symptoms when under stress.
      I have a very demandy job and have been mandated to work between 50-60hrs. a week. i tried my best, but my body was unable to keep up.
      So, two weeks ago i submitted to my employer for a FMLA leave and i took the plunge to begin plasmapheresis exchanges. I am current in the hopital now. I will receive my 5th and finally treatment tomorrow. i must say i do have a different sensation within my legs and my hands have totally recovered. i’m very grateful that this seems like this may be helpful for me, however it does come with a price, such as the five day hopitalization and a shiley (temp. dialysis cateter) inserted into my right jugular. (by the way, the replacement of 5% albumin is cheaper than the 50 grams of ivig i was receiving.

      any how, my point…. exacerbations……..stress??? fatigue??? working too many hours??? strained relationships??? is it all part of the baggage we have to be cautious of??? my neuro wants to return me to work with a few restrictions, such as a 50% reduction in having to take the grave yard call and to exempt me from having to work extra mandated shifts.
      i’m very happy that he is willing to go up to bat for me, but i feel that my immediate supervisor is a sociopath and would make my assignment miserable for me.

      ok, enough whining from me….. exacerbation…. tell me your experience, flag some websites you are aware, anything that may put my mind at rest.

      thank you so much family.

      i know i don’t write often, but i do try to keep up with the posts…..

    • Anonymous
      March 21, 2007 at 11:26 am

      Hi Flower ~ from what you have described, your body is screaming for rest – from everything! This is not an unusual response from pushing your body to far. Many of us have had to remain unemployed for that very reason. I do hope that you can find several options to reduce this huge load on your body that is wanting to heal. Have you checked out “temporary disablility”? It just might give your body the break that it is needing and asking for. I wish you well.

    • Anonymous
      March 22, 2007 at 6:35 pm

      Hi Flower,

      Since I returned to work I work less hours. I used to work 16 hour shifts 2xs per week call and another contingent nursing job. Anyway since I have been back to work I have been working with restrictions from my neurologist. They are that I work no more than an 8 hour shift at a time (so no call), and that I work part-time hours. I just went up to a full-time status, which is only 32 hours a wk. but only 8 hour days and no call and I quit the other job. I am just trying the 32 hour a wk schedule out. The less I work or stress myself the better I feel.

      I just returned from vacation. I was not on my feet all day but was active all day, I had a minimal amt. of pain and numbness. As I sit here and type this I am having a great deal of pain and numbness in my legs but this is the 4th day in a row I worked and I am on my feeting all day. So I do think there is a direct correlation between hours running around working to hours not worked especially if you have a job that requires you to be on your feet.

      Pam K

    • Anonymous
      March 23, 2007 at 2:09 am


      You have heard it all from everyone else. I used to work 55-60 or sometimes quite a bit more. Although the work was not overly physical, management can be stressful. People look at the physical side, and wonder why you can’t deal with the “stressful”.

      The problem is the constant demand on your body without time to re-charge. CIDP is unpredictable, and different for everyone. And CIDP is different for each of us day to day. You could do three flights of stairs today, but three flights of stairs tomorrow could put you in bed. Or maybe you can do 4 if you feel good. It is just different, where the “line” is. The “line” of where you can’t cross. You just have to take care to avoid closeness to the line.

      The more you cross the line, the easier it is to cross the line. The more you hammer your body, the more your body will deteriorate. Do what you can, but protect yourself.

      Now, with that said………

      Practically in life, we all make trade-offs. You have a couple of choices, and I think you really know the answers. If you are good at what you do, your employer will appreciate your situation, and work with you.

      I am now on disability, and struggling with what i can do, day to day.

      If you can still do things, take care of yourself so you can keep on doing things. What you do today can affect what you are able to do tomorrow.

      I hope you can work it out

      Dick S