Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: tracy, 45-54 Female (Patient) Published: July 26

I have had 12 surgeries in as many years and now have staph infection all over my skin. It started 2 years ago and traveled from my legs all the way up to my arms and back and breasts. I am sick most of the time and get sores in my mouth, nose and private areas. I am allergic to sulfa drugs so many antibiotics have been tried. I am sick of this! My multitude of problems range from cancer to hernias and removal of 7 feet of intestine. I got turned down for disability. I am going to die from this! I moved from Florida to Ohio and my new doctor's answer is to cut my pain medications to about a third and trying to take me off. No hope left for me, my pain is unreal!

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Comment from: MickieD, 45-54 Male (Caregiver) Published: June 07

I received a diagnosis of irritable bowel syndrome (IBS) in my late 30s after finally seeing a gastroenterologist. He did a colonoscopy to rule anything else and diagnosed my pain and diarrhea as IBS. Before exams in graduate school I usually had bad flare ups. My family doctor said it was just how I dealt with being nervous. I used to make a joke about how where other people popped Valium when they were nervous I popped Imodium!

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Comment from: LE, 45-54 Female (Patient) Published: March 15

I am 51 years old and was diagnosed 5 months ago with sarcoidosis. I thought I had Lyme disease due to all the join pain, swelling, and night sweats. The most noticeable pain was in my legs, upper and lower and a day later, red bruises appeared on the underside of my forearms; my wrists were swollen and painful too. My primary care doctor diagnosed it very quickly, not so much due to the swelling and pain, but due to the red bruises on my arms and around my ankles. She ordered a chest x-ray which showed something on my right lung so she then ordered a CAT scan which she confirmed was sarcoidosis. She put me on 40 mg of prednisone and referred me to a pulmonary doctor to monitor me since it was on my lung. I was on 40 mg for 2 weeks, then 30 mg for 2 weeks, then 20 mg for 2 weeks, then 10 for 2 weeks then 5 mg for a month. I felt great on 40 mg of prednisone, I didn't have one ache or pain! I did have trouble sleeping on that dosage so I took melatonin. It took 10 days for the swelling to go down in my ankles. I have been off of prednisone for 1 month. I walk 2 miles a day and try to drink lots of water. I am going to try taking fish oil based on what I read here and I do take an extra dose of vitamin D but after reading here that I shouldn't with this disease, I will ask my doctor about that. I am also going to increase my vegetable intake. I have no idea what caused it, something in the air I guess. I work at home and live in upstate New York where the air is pure. I am starting to think it was from leaf mold since I got it in the fall after the leaves all fell and we do have a camp in the woods. It seems to be at bay but every time I get an ache or pain, I think oh no! I will visit this site regularly for support.

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Comment from: Jenn, 45-54 Female (Patient) Published: March 08

I was officially diagnosed with sarcoidosis after a blood test revealed I had a high calcium level with severe dehydration which was exacerbating already present stage 3 kidney disease. At first I was diagnosed with cancer (so scary) due to what appeared to be metastatic lesions in my lungs which were visible on a CT scan. But blood tests revealed I had a high active form of vitamin D which was causing the calcium spike and a high ACE level which confirmed sarcoidosis which was causing the high active vitamin D level even though my regular vitamin D level was low. I had been taking high levels of vitamin D prescribed by my nephrologist too which is a big no-no when you have sarcoidosis but I didn't know I had it at the time. I believe I have had this disease for most of my life with intermittent bouts of various symptoms. I've had gastrointestinal issues, dry cough, rash under nose, sores in nose and mouth, hearing issues, eye issues, asthma, migraines and neck pain, back pain, joint pain, foot and toe pain, numbness in fingers, sinus issues, heart palpitations with chest pain, cold/night sweats, weight loss, chronic anemia, fatigue and now the worsening chronic kidney disease that I have been experiencing for the past decade has been determined to be caused by sarcoidosis. Prior to the diagnosis I had taken myself to many doctors including naturopaths explaining that I felt awful and no one was able to make a diagnosis, not even my internist of over 25 years could put the pieces together. The naturopaths all made it worse by putting me on vitamin D supplements. I have been misdiagnosed with several disorders including IBD (inflammatory bowel disease), plantar fasciitis, hair line fractures, gluten intolerance, hypertensive kidney disease, etc. I have always been sensitive to strong smells like moldy, musty odors and dust. Also, a lot of my symptoms would occur during times of emotional stress. Since my diagnosis in 2014, I avoid vitamin D and limit high calcium foods. I was on prednisone for 9 months and it helped slightly. I have been off of it for the last 8 months and I am experiencing ridiculous pain in both feet, neck, and finger joints. Just searching for a natural way to kick this into remission and trying to stay positive. This too shall pass.

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Sarcoidosis - Describe Your Experience Question: Please describe your experience with sarcoidosis.
Sarcoidosis - Treatment Question: What kinds of treatment, including medication, did you receive for sarcoidosis? Did they help?
Sarcoidosis - Coping Question: How have you been able to cope with your sarcoidosis?

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