What is Cryoglobulinemia?
A systemic inflammatory syndrome. Cryo=cold; globu=clot; nemia=blood. I have a blood clotting disease that intensifies when I get cold, stressed, stand or sit with my feet hanging down. The blood gels and gets thick, straining and damaging everywhere the blood goes. These proteins can be deposited in small and medium-sized blood vessels, which can lead to restricted blood flow to joints, muscles, and organs. It is a rare autoimmune disorder that seems to affect twice as many women as men, usually not apparent until middle age. I was one of the youngest known cases at 26. The onset started at 23 but it took a while to figure out what I had because it requires a special blood test.
Cryoglobulinemia has many painful, scary symptoms. Vasculitis refers to inflammation of the wall of blood vessels that include the veins, arteries and capillaries often called the "hurting disease." I have a high tolerance for pain but this exhaustive list of sensations can get the best of me. I find it difficult to concentrate, follow directions, and I can overtire easily. On an average day I experience, some or all the following symptoms:
• Skin - Purple & bloody spots (blueness, white blotchy achy hands
*Swelling of hands, ankles, legs and feet
*Scaly sores on head & face
*Hives, itching & Bleeding when exposed to cold, known
*Ulcers in nose (w/ bleeding), mouth, skin and slow healing
*Hemorrhaging internally and through the skin
*Weight loss, muscle loss, poor appetite
*Ultra sensitivity to temperature changes
• Joints - Swelling in joints, connective tissue & esp. hands, legs,
*Joint aches (arthralgias), Polyarticular Arthritis
• Gastrointestinal tract - Stomach pain, nausea,
*Gastrointestinal pain, irritable bowel with periodic bloody
*Episodes of cryoglobulinemia colitis with intestinal bleeding
*Abdominal pain and gas
*Overall flu like Weakness, Fever
• Blood - Low White Blood Cell count
*High Cholesterol (293 Low HDL-High LDL)
*Low blood pressure, high heart rate, cardiac spasms
*Vasculitis (inflamed blood vessels)
• Brain - Depression (mild to severe)
*intense (migraines) headaches, dizziness,
• Sinuses and nose - Allergies (stuffed up ears & nose), ringing in my
*Swollen Glands in throat, arm pits and groin
• Nerves - Numbness, tingling, or weakness in the hands, arms, legs &
*Leg & Arm Heaviness
*Intense Muscle Ache, Joint, Connective Tissue, Neck, Throat
• Eyes - Floaters (black spots in eyes), halo & blurry vision esp. at
I was diagnosed by observation, battery of lab tests, biopsies, blood tests,...
Did you know…. most people with Vasculitis don’t look sick?
Vasculitis Awareness Week
How do I explain how this feels. I have no words.... It is just something I have to deal with. We all have challenges. It is the way that we choose to perceive and respond to them that makes the difference.
Comfort and prosperity have never enriched the world as adversity has done. Out of pain and problems have come the sweetest songs, the most poignant poems, the most gripping stories. Out of suffering and tears have come the greatest spirits and the most blessed lives. -Billy Graham
The illness is not predictable. Kidney damage can be serious and result in failure. Death usually occurs from heart disease, infection or brain hemorrhage. Because of the thickness of the blood, stroke, blood clots, and blood clots in the eye-leading to blindness can occur. Vasculitis of the arteries can result in blockage leading to damage in the organs such as in the skin, kidneys, and bleeding in the lungs. Ulcerated sores can lead to gangrene because of a profound lack of blood flow especially to the extremities. The vessels shut down as if a tourniquet was applied.
The first line of treatment is staying warm-wear mittens, even to open the fridge! This is of utmost importance and a necessary preventative measure. Seems simple enough--well, if you are challenged in this way, it is not quite that easy. For instance, I lived in warm, sunny Florida; seems like that would be a good place to live in health and warmth. Well, try going into a grocery store, restaurant, or anywhere the air condition runs after being out in the heat. I need to wear full ski mountain gear to make it through a grocery or any shopping experience in a cold store. Have you ever seen anyone in a grocery store in Florida with full ski gear on? You really stand out--get looks of judgment. People whisper, make fun and even say hurtful, insensitive comments. So you begin to think it is easier to just stay home. But now that I have Gracie trained to stay in the snugli against my heart creating heat for me that I can not, it is a whole new world! She helps me to participate in life more safely. She is more than a dog, she is a medical device of necessity.
Eating is difficult. I must keep it simple: no ice in drinks, no sauces, spices to a minimum, etc. It either goes right through me, hurts or makes me feel nauseated. I get tired of chewing. I utilize liquid nutrients daily to supplement. I avoid going to the hospital since there is little that can be done, I would rather suffer at home.
For educational purposes, since the disease is rare and few have seen what it can do to the body. Here I share what a manifestation and painful episode can look like on the outside. This episode started in my feet and worked its way up my legs. Amazingly, my Service Dog, Gracie did try to warn me over 30 minutes before the onset. It was the first time I realized she had the intuition gift. She has been right on ever since as I have encouraged her gift and try to listen. They think some dogs are sensitive to a chemical or electrical change. My friends dog alerts him before he has a seizure. They are called, “medical alert dogs.” Because she alerts me, I am able to get to a warm place, elevate my legs and hopefully keep the damage to a minimum. I have not been hospitalized since I rescued and trained Gracie!
To read more go to: http://dynamics.org/~altenber/cryo/COLD_GEAR/ take a look at the necessary clothing-I have much of it. I even have battery operated heating gloves and boots. Yet, nothing works as well as Gracie. She offers consistent heat (any change can be deadly)--She helps to maintain a life saving homeostasis providing regular, consistent and necessary temperature regulation and feedback. She was trained to stay in a carrier against by body, specifically my core. I’ve trained her to be a constant alerting device to such changes in body temperature which can result in loss of life or limb. This a very difficult disease and its unwelcome roommates that move in with it, maybe the pictures can help just a little. Think of the symptoms associated with MS, Lupus or diabetes. The disease is similar. Cryoglobulins are antibodies. It is not known why the abnormal proteins become solid and thicken gel-like at low temperatures. But, when they do, they can block blood vessels throughout the body leading to complications ranging from skin rashes to kidney failure to death.
Click here for a detailed fact sheet on this condition.pdf
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