Does anyone else feel a change in their leg conditions when a storm is brewing??? I have intense throbbing and tingling when there is a storm coming and wonder if it would be related? I have CIDP and finished my round of 24 treatments in February. Thanks for any input.
Sounds like you need to continue treatments. If you are still having those symptoms you need treatments once a month for 2 days. Are you still taking prednisone?
Absolutely…YES!!!
I have had the leg ache thing since I was a child and I’m 61 now. I remember crying during storms and my grandmother rubbing my legs until I would fall asleep. My GBS status was downgraded to CIDP two years ago. I wonder if my childhood experience was a foreshadowing…
I get intense foot pain in the winter time only and only one foot at a time thankfully. It seems cold weather is a triggering mechanism for me. I don't get any pain in my feet during the spring/summer when rain storms arrive
I don’t think from GBS to CIDP IS A DOWNGRADE GBS IS NOT CHRONIC. CIDP IS
DocMac said:
I have had the leg ache thing since I was a child and I’m 61 now. I remember crying during storms and my grandmother rubbing my legs until I would fall asleep. My GBS status was downgraded to CIDP two years ago. I wonder if my childhood experience was a foreshadowing…
I can forecast the weather with the pain in my hands and feet before it rains. Cold does not seem to bother me.
I could forecast the weather before CIDP because I had fibroid myalgia but now it’s no muscles there to hurt.
Oh yes! I can tell when a storm is coming because my legs feel like they are heavier and like I'm walking through cement--and that's with getting my IVIG treatments twice every 3 weeks! Something with the barometric pressure in the air I guess...?
DocMac said:
Absolutely....YES!!!
At the airport an UPGRADE means better seats. In my vernacular, a downgrade means much worse seats on this CIDP flight.
Well put, DocMac, sometimes I feel like I am flying on the wing, but I guess I could have worse things happen to me. At least I wake up every and that is a good thing.
I have been dealing with CIDP for over 2 years. Weather changes absolutely makes my leg and hand symptoms worse. Since I can't work at my profession any more, maybe I could become a weather girl. Lol
Yes ! Weather absolutely affects my symptoms.
Thanks all. I am glad to know I am not the only one!!!
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Absolutely. I find I can’t tolerate the cold. Damp weather seems to aggravate my symptoms also. On another note, I’m frustrated as my insurance doesn’t cover therapy in my Dr’s clinic and I’ve been left to do almost all of the leg work in finding a covered medical supplier and someone to administer the meds. In my case the insurance will only cover in home treatment. I’ve been at it for more than a month and have yet to receive a treatment
Bobby said:
Absolutely. I find I can't tolerate the cold. Damp weather seems to aggravate my symptoms also. On another note, I'm frustrated as my insurance doesn't cover therapy in my Dr's clinic and I've been left to do almost all of the leg work in finding a covered medical supplier and someone to administer the meds. In my case the insurance will only cover in home treatment. I've been at it for more than a month and have yet to receive a treatment
when I need to find something I google it.
Bobby said:
Absolutely. I find I can't tolerate the cold. Damp weather seems to aggravate my symptoms also. On another note, I'm frustrated as my insurance doesn't cover therapy in my Dr's clinic and I've been left to do almost all of the leg work in finding a covered medical supplier and someone to administer the meds. In my case the insurance will only cover in home treatment. I've been at it for more than a month and have yet to receive a treatment
I have had CIDP since 2011 and i was told that in colder weather that the impulses from the brain to the nerve receptors was easier than in hot weather.That in hotter/muggy weather that its slows down the impulses considerably and its constantly hitting the nerve or the lack of the sheath covering the nerve causing it to cause constant pain as it tries to connect the impulses to the nerve.