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Old 03-11-2013, 04:01 PM   #1
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Location: Milton, Ontario, Canada
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Oasis2013 HB User
ice water sensation in hands, feet, back - not yet diagnosed, scared


I have fibromyalgia (diagnosed 22 years ago). I don't have FM flare ups very often, it has been managed really well without meds for most of the past 18 years or so. I occasionally flare with it, have full body pain for a few days and then it settles again.

Suddenly about 6 weeks ago,, my hands started really hurting. I thought at first it was a repetitive strain injury (I knit a LOT). I rested my hands but it kept changing and no matter what I was doing, including doing nothing, the pain was constant.

I saw my dr who said it sounded autoimmune to her, though it didn't present in a way that was typical of any kind of diagnosis she was aware of. She sent me for bloodwork and I had elevated ESR and CRP, elevated uric acid, and elevated liver enzymes.

I saw a rheumatologist for my inital consult last week (not sure how I got in so fast, was told it would be several months). By then the pain had spread into my feet and knee and I was having lots of sudden stabbing pains that came and went (looking back I've always had that occasionlly but it has been much worse). She has sent me for more bloodwork and I go back again at the last week of March and she said she may send me for an EMG then. She said also that I do actually have carpal tunnel but it has nothing to do with the rest of the stuff, I just happen to have it as well.

Now I keep having a sensation as if there is ice water flowing through my hands and/or feet, part of my back, down my arms, in my elbows, etc... It is more so in my arms if I am using them for something though it also sometimes happens when I'm not doing anything at all, just lying and resting.

I am a little alarmed by this. It feels MUCH better than the pain I was having. I hadn't wanted to take anything for it but I finally caved yesterday and started taking vimovo.. Have looked to see if the ice water thing can be a side effect of that but I don't see anything.

Does anyone know what this could be? I think it sounds nerve related. I am up at my cottage by myself and am a little worried about it, especially being so far away from drs, etc...

I keep worrying if some kind of damage is happening to my body when I am experiencing these things. I don't know what is going on and I don't know what I should be doing about it. The symptoms are new and I know my rheumatologist is out of town anyways.

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Old 03-12-2013, 11:46 AM   #2
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Re: ice water sensation in hands, feet, back - not yet diagnosed, scared

I'm not familiar with that symptom. Hopefully someone one else can shed some light on this for you.

Old 03-13-2013, 06:01 AM   #3
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Re: ice water sensation in hands, feet, back - not yet diagnosed, scared

Hi. I'm not sure whether this sounds close, but when I experience pain along the long bones of legs/arms, if you asked whether the pain feels hot or cold, I'd say "both" or "neither". Or even, "The pain is hot but I feel cold." It's very hard to describe! I've had this kind of pain episodically since age 13, so you'd think I could word this better, huh?

When your labs come back, you should get copies. When ESR and CRP are elevated, and the patient reports pain, fatigue, etc., rheumatologists tend to order ANA (but it's only a general threshold test), PLUS tests for specific autoantibodies seen in various connective tissue diseases like lupus, Rheumatoid Arthritis, Sjogren's, Mixed Connective Tissue Disease, etc. e.g., Rheumatoid Factor, anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, etc*. (*There are a bunch more.)

Did the rheumatologist say how high your uric acid and liver enzymes are? I think those can elevate for many reasons, even certain meds and OTC's. Anyway, let us know how you're doing. Here's wishing you quick answers & help, bye, Vee

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