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Sunday, June 25, 2017
Can my painful flares be sarcoidosis?
I am a 38 year-old female and I suffer from "flares" of intense pain in my joints and muscles accompanied by extreme fatigue and chest pain/shortness of breath.
My flares began with my first pregnancy. I developed a fever of unknown origin (105 degrees) in my 7th month. Afterwards, I would suffer from flares of severe joint and muscle pain and fatigue and sometimes included low-grade fevers. I had pre-cancer of the cervix (lots of bumps and nudules too) and had to have cryosurgery.
After my pregnancy I developed severe abdominal cramping and pain that was diagnosed as IBS after extensive testing. When I could no longer stand the pain after several years, I begged for an exploratory surgery. At 29, I had to have a hysterectomy due to endometriosis/adenomiosis. During this surgery they noticed several small nodules on my liver, but did not take biposies due to fear of possible uncontrollable bleeding. I also had several adhesions, but had never had surgery before. Needless to say, the abdominal pain eas gone completely (no more IBS) after surgery.
Three years later I had a benign tumor removed from my neck and one removed from my breast that measured 5cm. (fibroadenoma) This trigggered another flare accompanied by numbness and tingling in my feet and hands and severe abdominal pain that lasted two years, (was diagnosed as IBS,again) which later went away on a gluten free diet. (negative blood work for celiac, but my youngest daughter has celiac) All of my flares do not go away without prednisone. We`ve tried so many anti-inflammatories and pain relievers and even narcotics, but nothing helps except prednisone.
I ended up seeing an internist, immumologist, rheumotologist, gastroenterologist, orthopedic doc, neurologist for all of my painful flares. Every test was negative and I lost my private insurance due to a HUGE increase in rates to push me out. Now I can`t get insurance, but I`m still in pain!
This past summer I traveled to Beijing and Hong Kong and came home extremely sick with horrible pain, fatigue and a new symptom; chest pain! The chest pain came and went with shortness of breath and was diagnosed as pluerisy, but wouldn`t go away with antibiotics. It became harder and harder to do anything. Walking through the grocery store left me winded and I had to sit down. I am 5`5" and weigh 120lbs. and I`m generally very active. I couldn`t get out of bed and had a hard time walking it hurt so bad. The doctor did all the usual tests again. The inflammation marker was not elevated at all, everything was negative except the B12 was low, which I get shots for now.
When my doc finally gave me prednisone, the pain went away immediately. My chest pain went away and I had more energy and felt wonderful. When I tapered off, the pain came back and I was miserable. he wants to send me to a rheumotologist, but I feel like I`m going through the mill again for negative tests and I have to pay out-of-pocket for everything.
My mother was diagnosed with sarcoidosis when she was 34 by a lung biopsy. Her family also carries the gene for Celiac. She thinks I have sarcoidosis. Does this sound like sarcoidosis?
This certainly sounds like an inflammatory disease, and I imagine that you have been tested for all of the usual "suspects," like rheumatoid arthritis, lupus, etc. Sarcoidosis can cause symptoms of fatigue and arthritis, but fevers to 105 degrees would be unusual. The only way to confirm sarcoidosis is to exclude all other causes (infections, autoimmune diseases, hypersensitivity reactions, vasculitis, etc.) + biopsy of one or more affected tissue.
If you have enlarged lymph nodes, skin rash or lung disease, it is relatively easy to obtain biopsies from those areas. You mentioned the liver being "nodular," and that is another potential source of biopsy material.
Unfortunately, there is no definitive blood test or exam finding that distinguishes sarcoidosis from other diseases. Furthermore, sarcoidosis can run in families, but usually does not.
Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University