Sorry,I've not heard of it.I'm sure someone on here has or knows something about it. Hang in there. Jan

No sorry, I've never heard of this...............

Oh my gosh, yes dear. I have it. And it is very painful. Started in my feet. Now is in more of my joints. It is VERY rare. I have Hepatitis C and have developed mixed essential Cryglobulemia because of it but even w/ Hep C patients only abt.2% develop it. There are other types that are not connected to Hep C but even more rare. ! The bloodtest is very sensitive and if the lab doesn't do it just right, you will not get an accurate result! They had to re-draw my blood 3 times because the lab kept messing up. Its so rare they seldom do the test. My hepatologist is the one who caught it. I couldn't beleive it when I saw your post. I only know one other person who has it. She is in the Hep C Group!! I feel for you because it is so very painful! Please keep me posted on what you find out.

Thank Nealytee.....im so sorry to hear that you have it and all the pain that you have to go through. I just have a couple of questions for you. What are your symptoms and how quickly did they develop? Because I have had this problem with cramping since my early 20's and sometimes I feel alot better but sometimes worse....these days alot worse. But what is the pain like? I have been tested for Hep C and it came back negative. I have also been tested for any autoimmune diseases and they all came back negative. Also what treatment do you receive for the disorder?

I have not heard of this.

I do think it is a good idea to be tested several times because I think just about all the test out there can have false negatives.

Sending Hugs & Prayers that your doctors can find out what the problem is and have a good treatment for it and you feel better soon.
Mary

It started abt. 10 yrs. ago w/ pain and cramping in my feet, particularly left foot. At first I thought it was my shoes as I wore business clothes and heels almost every day at work. Gradually became worse and developed neuropathy in left foot severe, rgt.foot not as bad. Was dx'd w/ hep c in '98 but no one put the two together and I really had no symptoms from the Hep C back then other than occassional fatigue.
About 5 or 6 yrs. ago began having pain in rgt. hip, and then all over body. Was dx'd w/ fibro but that still didn't explain the prob. w/ my feet. I would test postitive for RA but then when further test were run RA would be ruled out. This went on for several yrs. Very frustrating. Finally, a very good Hepatologist recognized the symptoms and had me tested for Cryo. Took going for test 3 times for lab to get it right!! Blood has to be kept at a certain temp. then tested, and several other steps I can't remember. There are a few treatments for Cryo but I can't have most of them because of my liver disease. The tx. for hep c often resolves the Cryo and I hope to start that tx. soon. For other types of Cryo, sometimes steriods (prednisone) helps, there's another drug (can't remember the name but I think its also used for RA), and a type of blood transfusion. I just lost my insurance or I would try the transfusion. I'm not sure what type of specialist treats it, possibly a hemotologist? The kind I have, mixed essential cryo, causes granuals to form in the blood. Cold weather makes it worse. Try to keep your feet warm. I put hot packs on mine when they get cold, which is most of the time. I elevate them because my foot swells now. Its such a hard feeling to describe. They are numb, tingle, burn, hurt like..... and feel like the tendons are so tight they're going to pop!! My "saddle area" is the same particularly my tailbone and right hip. Cryo can eventually cause damage to internal organs, particularly kidneys and lungs and eyes too, . I think causes shortness of breath too. I hope all this helps. I was just dx'd abt 5 mo. ago and am trying to learn more too!!!

It is a paraproteinemia....abnormal protein production from marrow. It has been associated with pain (correlation). Pathophysiologically, more severe are malignant (Multiple Myeloma), but fortunately, lesser forms are not.

Thanks CC. Very succinctly put! One thing the little info I found does say, avoid cold!! Ha, I live in Western N.C. No avoiding it during the winter so I pretty much hibernate. LOL

I was diagnosed with Cryoglobulinemia 2 years ago. The cold is definitely my worst enemy right now. I wear layers all year around. People keep telling me I should move to a warmer state. That is fine and dandy but it will not matter. I still have to deal with fans, air conditioners, refrigerators and freezers(when I go shopping), even a breeze outside will effect my condition. I have found that it bothers my lungs the most when I breathe in cold air. Not only do I have Cryo but I also have 7 other autoimmune disorders including RA. Every day is definitely different.

Monkeymom12, this sounds like a distressing condition. This post is so old that I guess it isn't all the common. I am going to write down this disorder and look it up. I have Raynaud's and my hands and feet will get very painfully cold. I take a medication that helps it. But like you, I wear warmer clothes and in the hot summer here, I go outside and get way too hot.