I have just, well a month ago, been diagnosed with Waldstrom’s macroglobulinemia. While searching the web for information on it I came upon a web site that listed Cryoglobulimia as a disease that could be symptomatic of WM.
I wanted to ask some one about my feet and ankles. When I get outside and my feet start to get cold it’s like I get an ice cream headache in my bones. Once I get it, it stays with me for hours even after my feet are warm. I am becoming more and more intolerant of the cold. I live in a mild climate here in the Seattle area. It seldom gets below thirty-two degrees.
Does this sound like something that you have experienced?
Hi
My husband also has cryoglobulinemia type one and this causes the same problems in his feet exactly as you describe them. His feet also ulcerate in the cold weather. None of the treatments have worked yet and he is at the hospital today. He has had chemotherapy but the cryos and the paraproteins in his blood have increased , not decreased. They thought that the low grade lymophoma in his bone marrow might be the cause of the problems but so far things have just got worse, especially now that the weather has got colder. He is also on steroids as well as the chemo that he has had.
Hi, these are some of the symptoms of cryoglobulinemia that I experience. For me it has gotten worse the more I am exposed to cold. It can take minutes for the cold in the bones to start and hours for it to go away.
My experience has been that I first have symptoms a lot like rheumatoid arthritis; fatigue, weakness, joint stiffness, and pain. It is symmetrical and the last time it it happened it affected my feet, knees, wrists and hands. As the cryoglobulinemia progresses the cold eventually causes raynaud’s phenomena and then the purpuria and lesions start. From there it is pretty much a visit to the hospital for me.
the progression of the cryo is rapid. The last time it happened it only took a few minutes in the cold (about 20 degrees F) , for the cryoglobulinemia to flare up. Yes, I was properly dressed for winter, in an arctic parka and and gloves.
I cant’ stress enough how quickly it can go from being a minor problem to a serious situation. It is very fast.
At present I’m symptom free. the steroids keep me in remission. Cold still makes my hands and feet hurt. It is not the pain of arthritis, but my skin hurts due to the cold.
ME 
Thanks for sharing this. Have you tried any physical exercise since you have
been treated - (your foot condition probably means no). If so, what are your
experiences post exercise and cooling down - are your symptoms exacerbated?
What happens when you rapidly heat up say after a hot bath?
-----Original Message-----
From: alcyon73 [mailto:cryoglobulinemia-fft-7738@lists.fireflyhealth.org]
Sent: Friday, 27 March 2009 10:53 a.m.
To: adrian@lush.net.nz
Subject: Re: [cryoglobulinemia] Waldstrom’s macroglobulinemia and
Cryoglobulinemia
The wound on my foot is nearly healed. I’ve gone back to wearing a regular shoe on the foot and I stopped using a cane two days ago. So I’ve not had much experience with exercise. I sweat profusely at times. I think it is due to the steroids. If I heat up it takes me a while to cool down, but I feel no ill effects. At present, my life is slowly returning to a sembalance of normalcy…or at least to one of regular routine… I think normal went out the window when I was diagnosed with this.
Me