muscle weakness with cryoglobulinemia

Posted by zebra2022 @zebra2022, Dec 26, 2022

I've been wondering if anyone else has had issues with muscle weakness when you get colder. The colder it gets from the weather, Because of the Cryoglobulinemia, I have been dealing with difficulty to take deep breaths. I've also noticed muscle weakness.

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Hi @zebra2022 with your cryoglobulinemia there proteins in your blood which clump together if your body temperature falls under 98.6. These gelatinous protein clumps can impede your blood circulation, which can damage your skin, joints, nerves and organs, muscles… So basically, when it gets cold, the reason you’re feeling more fatigue with muscle weakness is the lack of oxygen to your tissue. It’s similar to what we talked about with your finding it difficult to breath when you’re cold.

This has to be really challenging for you when winter hits. Not sure what part of the country you’re in but it’s been brutal here in the Midwest trying to keep warm. From our other conversation regarding your breathing, the idea of wearing a gator at work is great. It would be less constricting on your face than a mask so hopefully would lessen the asthma triggers for you. Also, I’m wondering if a little personal warm air mist machine might help you breath better? I have one from Vicks. It’s small, very easy to keep clean and sits on a desk with minimal footprint.
Have you tried fleece lined leggings? Or tights under your pants? Cuddleduds! Those would add another layer of warmth to keep your body temp up.

I did a little more research and found 2 articles that are worthwhile. This is from the Vasculitis Foundation on cryoglobulinemia. You maybe have seen it already but if not, it’s a good source of information on the condition, causes, symptoms (including muscle weakness) and how to cope.
https://www.vasculitisfoundation.org/education/forms/cryoglobulinemia/#1545061445202-657df321-5002
There’s a patient advocacy organization for patients with Cryo that you might find of some additional help.
Alliance for Crypto: http://allianceforcryo.org/

Since my bone marrow transplant, my hands are always cold. So my daughter bought me this cute little hand muff that’s has a battery pack to keep it warm! Think that’s something you might like?

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Thanks for the additional information. I'm still learning more about these new flares (if that's what you call them). Everything this winter is new to me so I have lots of questions and no one around here can answer them for me.
I live in Washington state and it's getting colder here. Not terrible bad but it is cold enough to cause me issues. I have been wearing layers – 2 pairs of socks, fleece lined leggings under my pants, thermal tops under my work shirts plus a fleece vest and my fleece jacket. Then I wear fingerless gloves at work too. My daughter is getting me things that will help keep my body temp up so that helps. She's looking out for me.
I just started looking into like a portable sauna that I could periodically use during the course of the day to see if that can help melt the proteins (even if I can't tell if it helps). But it could help raise my body temp since it normally runs between 97.3 to 98.4 on normal days. I went to a home and garden show today so that got the idea in my mind. Found a few on amazon. Found a few I could possibly get.
Thanks again for the information and suggestions.

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Your body temp is normal. That's not the place to look for problems.

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