• Anonymous
      July 18, 2007 at 4:27 am

      My pain level have sky rocketed in the last 4 weeks. I went from IVIG every other week to 3 weeks just once. I crashed big time-couldn’t take a decent breathe/no energy.The home health nurses didn’t think I could do this in the heat but the neuro thought after 26 months of bi-weekly we might give the every 3 weeks a shot.So the nurses had the doctor to put me back on the 2 week schedule.
      I also started oral Methotrexate in March because I felt I needed something more to slow the CIDP.
      My whole body is burning and the nerve damage is trying it’s best to do me in. My sister said I’m better but not that much after 2 years. Just holding my own. It’s been so humid here.
      Any suggestions?? I feel like a house hermit.
      Never thought I’d say where is the cool fall weather ’cause I loved the warm days.So much for building a nice outside deck and I can’t use it””

    • Anonymous
      July 18, 2007 at 9:08 am


      So sorry you’re having such a hard time. I definitely feel worse in the summer – I live in northern VA and the humidity is bad here. I feel more “swollen” in the summer with the humidity so I always attribute it to the swollenness pressing on nerves but don’t know if that’s really true. My solution would be to move west where there is no humidity. I’ve been there and feel so much better. But……my husband’s job is here so here I am!:o

      Thanks for sharing and keep telling us about your problems, concerns. We’re all in the same boat!


    • Anonymous
      July 18, 2007 at 10:19 pm

      I was told heat made CIDP worse- don’t know why- but out here in the drought of Tennessee heat 🙂 my husband is so worse with his CIDP and having so much pain and wekaness, he cannot function and keep our 50 acre farm growing. Of course, the good side is that (since there is a drought) there is nothing growing right now anyways!

      Keep in the A/C. Consider colostrum- look at [url]www.naturade.com-[/url] product called colostrum plus. Seems to be helping us.
      Sigrid and Todd

    • Anonymous
      July 19, 2007 at 8:56 am

      I keep hearing heat is bad on people with CIDP , I live in Missouri which is like Tenn. I have been out in the heat alot , coaching my daughters softball team . Also I have been plowing a plot out in the back yard getting ready for deer season.Yesterday it was between 95 and 100 I was out there for 4 hours working, yes I was a little wore out but I took my shower and I am at work now putting in my 8-1/2 hours of work. It must be the vitamins that I am on, but mostly the power of prayer and beleiving in GOD!!!

    • Anonymous
      July 19, 2007 at 6:28 pm

      Good for you Mudbear. Too bad we all can’t be as active. God knows I’ve tried!
      My husband always said I started warming up about the 4th of July and was thinking about getting cold in August. I still prefer the heat and sometimes comment that it’s not so bad when others are very uncomfortable, but do notice the difference when the humidity is high. My fatigue level is really high and many of the risiduals seem more pronounced.