January 2017

We have had a lot of people complaining of pain in feet and\/or hands due to cryo lately. I’m getting the impression that people are often not sure which is which. Cryoglobulinemia is clearly and easily described by Meltzer’s triad, having core symptoms of arthralgia, purpura, and weakness.

Many of us DO experience arthralgia, the pain, swelling and inflammation of rheumatoid arthritis (not to be confused with osteoarthritis). This very often starts in the feet and ankles. Cryoglobulinemia is a vasculitis, and it can cause circulation problems in the extremities, which also causes pain and swelling. On top of all of that, about 70% of us also have problems with neuropathy, usually in the feet, sometimes the hands as well, but it can happen elsewhere too. (I have neuropathy it the left side of my face, for example). I have had issues with neuropathy in my feet, and that has slowly improved since I have been in remission. Even my face is better and is now mostly just annoying instead of painful.

About 25% of people with cryo have symptoms that are identical to rheumatoid arthritis. In very few cases it also includes erosion of joints, just like severe erosive rheumatoid arthritis. This means that sore, stiff, swollen feet, hands, joints are to be expected for many of us when flaring.

A flare is more complicated than just inflamed joints. There is vasculitis which can cause circulation problems in the hands and feet, and it will cause inflammation and swelling there too. At the same time, the breakdown products of the immune system reactions to cryoglobulins can lead to damage to the myelin coating in the very small nerves in the hands and feet, which results in neuropathy Some of us will experience damage to larger nerves in the lower legs which can result in “foot drop”, a partial paralysis of the foot and lower leg (I have had this before). Fortunately, IF the flare is halted, the myelin coating on the nerves can eventually regenerate and things improve. But if the cryo is not kept in remission, the neuropathy can only get worse, and likely won’t be getting any better. Even if remission is established, the neuropathy will continue for months, or even years before it has healed sufficiently for things to improve.

Neuropathy commonly causes a tingling sensation, sometimes sharp pains like a pinprick, or an itchy sensation that is somehow impossible to scratch in the right spot… sometimes one can have odd sensations that are hard to describe. At times it can be downright maddening, and at other times it is not so bad. It varies. Some people with cryoglobulinemia have neuropathy as the only presenting symptom.

Arthralgia… this term is used to describe arthritis-like pain, stiffness, and swelling. Among those who have cryo, some of us never really get this, others of us are plagued by it. Like rheumatoid arthritis, it basically involves stiff, sore, inflamed joints, usually starting in the feet and ankles, and many report that it seems to work its way up the body as a flare worsens. There is always some swelling, and it is always symmetrical… that is, if the left ankle is affected, you can expect that the right ankle will also be affected. One interesting indicator is that when the hands and fingers are affected, the very last joint in the fingers is never affected by the swelling and stiffness.

Vasculitis: You are likely to have a rash when flaring, but some of us never have a rash, at all. But purpura and echymoses are commonplace, and in some cases, you might have necrotic skin lesions, skin ulcers, and even gangrene that develops rapidly. You can expect to have some swelling in the feet and lower legs at times. It varies a bit, but the basic problem is inflammation of small and medium-sized blood vessels.

With the above in mind, it can be hard to sort out what is causing pain and swelling in the extremities because we can have all of these things going on at the same time. With that in mind, we need to pay attention to our bodies and learn to understand exactly what is paining us.

by Glen Gardner