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cryoglobulinemia and shortness of breath
Now that the weather is getting colder. Has anyone with Cryoglobulinemia had issues with trying to take a deep breath or get shortness of breath in the cold weather or a cold area? I'm not sure if its realated or if its completely separate, One doctor at urgent care has a theory that its the cold weather or body temp that is making the lungs not fill up completely to get a full breath. My lungs were clear on the xray and not filled with fluid like they were in the hospital. Just wondering if anyone else had this issue.
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Hi @zebra2022 From our Mayo website: “ Cryoglobulins are abnormal proteins in the blood. If you have cryoglobulinemia (kry-o-glob-u-lih-NEE-me-uh), these proteins may clump together at temperatures below 98.6 F (37 C). These gelatinous protein clumps can impede your blood circulation, which can damage your skin, joints, nerves and organs —“
From everything I’m reading about your disease, it’s crucial that you take extra precaution winter to keep your body warm because your blood won’t be able to flow as freely. The lungs can also be involved so it would stand to reason that when your circulation slows down, you won’t have as good of an oxygen exchange in the cold weather.
https://unckidneycenter.org/kidneyhealthlibrary/glomerular-disease/cryoglobulinemia/If you have cryoglobulinemia, it's important to avoid exposure to cold — especially to your fingers and toes. You may want to use gloves when using the freezer or refrigerator. Check your feet daily for any injuries, because cryoglobulinemia can make it more difficult for foot injuries to heal.
Two articles worth reading:
https://www.mayoclinic.org/diseases-conditions/cryoglobulinemia/symptoms-causes/syc-20371244
Have you tried wearing a mask outside or keeping a gator/scarf around your face to keep your lungs warm while breathing?
My brother developed cryoglobulinemia in his early 40’s. The term means “cold blood”. The blood just clumps together and the cold weather is very difficult for those who have this illness. My brother was a truck driver and found it so hard to be out there doing his job in the cold weather. He used to wear very heavy socks and gloves and really “bundle up” in the New England winters here. Sadly, he passed away at age 46 but NOT from cryoglobulinemia. He was on vacation in Santo Domingo when he had a cerebral hemorrhage. His doctor in Boston assured us that it was *not* from his cryoglobulinemia. He never had shortness of breath but just felt the cold more intensely than his family members. Wishing you all the best as you go through this illness. The shortness of breath may be due to something else. My brother was with a great hematologist here in Boston.
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1 Reactionmost of the time when I have the issues breathing is at work. Of course its cold in the office. When I wear the mask for long periods of time it triggers my asthma.im learning all sorts of things with this Cryoglobulinemia. i wear fingerless gloves most of the time at work and my daughter got me foot warmers to put in my shoes for work. I'll see if she can make me a gator so that I can functually wear it in the office. thank you
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