Make like an Inuit

make like inuit

Living with Cryoglobulinemia.

I live in the SE of the UK. Fairly temperate. Where snow in winter is rare and in summer maybe high 20’s C. But I’m beginning to understand how people in frozen latitudes survive! It can only be done with 24/7/365 awareness of the dangers around them and for which they prepare. Cold is our common foe. As a Cryo sufferer I too can only maintain a state of wellness by vigilance in not getting exposed to too much cold. Cold which might manifest itself as an almost unnoticed draught indoors, a gentle breeze on a hot summer day or full on winter. Or as a cold drink, ice cream, A/C or the difference in temperature from one room to another.
From a position of being well and able to function normally, one or two small cold washes may not have much initial impact. But without a recovery period, one or two more small cold washes will cause a landslide in my wellness levels. Recovery will take much longer. Days rather than hours.

Wellness means I can run upstairs and down, think straight, have good humor and am pain free. After a Cryo landslide I’m an old man without the energy to roll off the couch to trudge to the kitchen to make a cup of tea. Pain accompanies every move. The Black Cloud of gloom/depression invades my head. I can barely hold a simple conversation, never mind a bit of banter. Panting for hours on end doesn’t help either. It also makes eating a chore.

So I make like an Inuit. Not in furs but certainly with enough layers, head to foot, to keep any chill or draught out. With extra precautions like blankets, scarfs, gloves etc available for emergencies. And I’m always aware of my environment. I balance the probable impact of being outdoors against necessity to be outdoors. But mostly my best survival tactic is ‘Attention to Prevention’. Hoping for a medical solution is valid. Self maintenance is immediate. And much more rewarding than blindly grinding on between Dr. appointments!

Cryo and Arthritis

Cryo & arthritus

Cryoglobulinemia can cause arthralgia (arthritis-like symptoms), less frequently cryoglobulinemia can cause arthritis which is difficult to distinguish from rheumatoid arthritis This includes the erosive form of rheumatoid arthritis. Just like rheumatoid arthritis, the arthritis caused by cryoglobulinemia requires that rheumatoid factor be present. If you have type II or type III cryoglobulinemia , you are positive for RF, guaranteed… This kind of arthritis differs from the simple arthralgia that some people with cryo experience in that it is always symmetrical (both left and right side joints affected), commonly worse in the morning, and will improve , as the day progresses allowing stiff, sore joints to loosen up a bit. In general terms arthralgia involves joint pain, but not inflammation of the joints. Rheumatoid arthritis involves both pain and inflammation in the joints. Lastly, some people with cryo actually have rheumatoid arthritis AND cryo at the same time! Either way, if you have the arthritis, you can have joint inflammation and a risk for joint damage. You need to talk to your doctor about it. Sometimes milder cases of RA can be treated with aspirin or NSAIDs such as advil or naproxen sodium. In general, forcing the cryo back into remission with steroids or immunosuppressants will also force the arthritis to remit…. but once the joints are damaged, the damage is done and there is no remission from that.

Just remember, that joint pain without swelling, is not likely a significant amount of inflammation. If you are having trouble with RA, then you will most likely have pain, stiffness AND swelling from the inflammation. I have had my ankles and feet affected so badly that I could not get my shoes on. Same deal with my knees, but I don’t put shoes on my knees… tongue emoticon It is always symmetrical, that means that if one knee is hurting, swollen and inflamed, the other knee will be much the same. As far as hands and fingers go, I have problems there too, only one clue that it is RA is that the very last joint toward the end of your fingers is never affected. Basically the symptoms of arthritis caused by cryoglobulinemia are identical to those caused by rheumatoid arthritis.. so I guess we call call it “RA”, even though we might not have RA at all… but then there are some of us who do!