Coping with Cryoglobulinemia Flare-ups
by Dr. Diane Dike
Have you ever run a marathon?
I use to be a runner. I did biathlons and triathlons. As runner, biker, hiker, skier, swimmer, hang glider, coach... I planned to be active all my life. But when cryoglobulinemia began terrorizing me 25 years ago, the life I knew slipped away.
Now I feel that same soreness I use to feel from exercise for the simplest things like getting out of bed, taking a shower, walking or other activities that a 47 year old woman shouldn't need to lay down to catch her breath about. Don't get me wrong. I'm thankful to still be alive.
Cryoglobulinemia (kri-oh-glob-u-lih-NE-me-uh) is a rare blood disease that develops when the presence of high levels of abnormal proteins, called cryoglobulins, are found in the blood. The name literally means “cold antibody in the blood”.
In stress and cold temperatures, these protein antibodies precipitate clumping together forming a thick, gel-like glob which blocks blood vessels, potentially causing a wide range of complications. There are three types of cryoglobulinemia, based on the type of abnormal protein found in the blood.
Cryoglobulinemics have flare-ups. What are flare-ups and what can be done about them? A flare-up is a period when symptoms are more intense. An occasion where pain, swelling, discoloration, itching, burning, tingling, nausea, abdominal pain, hemorrhoids, headaches and a feeling of un-wellness intensifies.
Many patients with cryoglobulinemia experience flare ups which can lead to depression, irritability, weakness, bloody or black extremities, amputation, gangrene, days of non refreshing sleep, exhaustion and death.
Sometimes cryo patients can identify what triggers a flare-up and can then lessen symptoms. At times, a patient can do everything just right and still have painful flare ups. For me flare ups were intensified during my menstrual cycle, so in my early thirties I had a full hysterectomy. It helped.
What causes flare-ups?
1. Eating cold foods.
2. Exposure to cold in the form of drafts, air conditioners, fans, or any temperature fluctuations causing a disruption in homeostasis.
3. Processed, packaged and sugary foods that lower or stress the immune system or cause constipation or IBS can possibly contribute.
4. A stressful day or event.
5. Overexertion, too much activity even positive events.
6. Poor sleep.
7. Standing too long or sitting with your feet dangling. Wearing pantyhose.
8. Chemical sensitivities, food allergies, nutritional deficiencies, heavy metal or mold exposure can also possibly contribute because it causes stress on the body. Generally, it's an issue with dropping temperatures but many patients have even noticed a flare up upon catching a flu, cold or a flare up of other overlapping medical conditions.
How can you recuperate from a flare-up?
a. Soak in a hot tub or take a warm bath for at least 20 minutes with dead sea salts or Epsom salts. Along with lavender and other essential oils could be helpful.
b. Use coconut oil to sooth skin after and get into a warm bed with lots of blankets to rest (read a favorite book, watch a relaxing movie, listen to soothing music, snuggling with your warm dog).
c. Try different natural products to see what works best for you: A healthy smoothie, acai juice, a cup of relaxing tea, a piece of dark chocolate, magnesium, vitamin D, MSM, healthy fats, and cannabis has many medicinal qualities that can calm an overactive immune system.
Hopefully you'll sleep better after any of the above because sleep is SO important.
d. A specifically trained service dog can save your life, alert you to trouble before you have a life-threatening problem, help you participate in life more safely, retrieve things for you when you are unable to, provide you emotional comfort, they can be trained to stay on your person creating life-saving and consistent heat, and support and help you do what you couldn't have done.
Remember to take care of yourself. Listen to your body when it is telling you something. Usually the flare-ups will calm down quicker and clear up faster if you take precautions and act quickly.
Always bring an emergency kit. It should include the above listed items along with a sleeping bag, microwave able hot packs, and an identification card listing your conditions along with the direction NOT to apply anything COLD in the case you should black out and be unable to express yourself. Also include an emergency phone number for a loved one who understands your condition.
Stay connected with a support group that understands your rare condition and challenges. One that you can bounce questions around for ideas, strategies and to just simply remember you are not alone!
No matter your health challenge, don't give up! Everyone needs encouragement from time to time because we feel discouraged or feel like no one cares, needs or wants us anymore. This disease causes us to feel so broken, misunderstood, confused, and we feel our life is slipping away but I'm here to tell you that your brokenness can become the place where your mess becomes your message and your test your testimony!
It's never too late if you don't give up! You have more to offer than you know especially while you persevere through the tough days not only surviving but thriving. You can overcome your challenges to live a life of impact, purpose and victory!
Facebook support group for cryoglobulinemics, those who love them or want to learn more.
Tissue from the kidneys and skin should be examined for ultra structural abnormalities. Skin biopsy is less invasive than renal biopsy and should be performed first. Kidney biopsy most often provides the diagnosis if it is not established by skin biopsy. Pictured is an electron micrograph of a kidney biopsy specimen from a patient with cryoglobulinemia. The kidneys filter wastes and extra fluid from the blood and direct them to the bladder as urine. Cryo patients often have:
- hematuria, which is blood in the urine
- proteinuria, which is excessive protein in the urine
- impaired kidney function, which causes excessive waste products in the blood
Common symptoms of cryoglobulinemia include fatigue, muscle pain, joint pain, difficulty breathing, skin ulceration and death of large patches of skin cells. These symptoms are quite general and can develop regardless of the specific organ or organs involved. Kidney disease and liver disease are relatively common consequences.
These organs are the most likely to be affected by levels of blood cryoglobulins because they are the bodies filtering system. PREVENTION is key to not only surviving this complicated, confusing and overwhelming disease. According to most research available more than 90% of cryo cases are associated with Hepatitis C infections. Hepatitis C is acquired by tainted blood products, injection drug use (needle sharing), and possibly sexual transmission. Treatment of the underlying hepatitis may be put cryo into remission.
I do not have Hepatitis C. I have the orphan cryo. Doctors have no idea why I have it but watch for some type of cancer that is possibly "hibernating" until it decides to appear. My mother died from Multiple Myeloma (a rare blood cancer) which is closely associated with cryo.
Stay Strong and Courageous!Diane
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