Sarcoidosis Support Group

Sarcoidosis is an immune system disorder characterised by non-necrotising granulomas (small inflammatory nodules). Virtually any organ can be affected, however, granulomas most often appear in the lungs or the lymph nodes. Symptoms can occasionally appear suddenly but more often than not appear gradually.

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Lungs & Respiration
/ Sarcoidosis Support Group

Anyone with similar symptoms?

ReloadJoe
ReloadJoe

I am new to the group. I was diagnosed with Sarcoid in 2002. I have developed severe Small Fiber Nueropathy (SFN) which is a manifestation of Sarcoidosis and has been diagnosed via muscle biopsy. Within the last several months I Have developed muscle pain in my legs, feet, arms and hands.  My finger joints lock up and I have to manually bend them to get them fuctioning again.  The pain is bad enough to limit function to the point were it hurts to type this message or lift a cup of coffee.  My joints crack or snap when flexed.  My legs pain limits walking.  Is there anyone out there experiencing the same symptoms???

sonnycamehome
sonnycamehome
Hey there...welcome to the group. I'm sorry you're struggling. This group isn't very active at the moment, so I don't know how many responses you'll get.

For me, sarcoidosis has affected my eyes and my skin, so I've got some different symptoms than you. It sounds like you have a good Dr though and that is key to treatment and management of this disease.

Wishing you all the best....
kpj300
kpj300
Hello. I only check here occasionally. For three years or so, I felt really bad, and then finally in 2012 I was diagnosed with Sarcoidosis. My skin and lungs were mostly affected. I did get small lesions on the eyelid and foot and I've had some problems with arthritis, but I was told that mine is Osteo-arthritis. I have problems with all the joints of my body though, including ankles. Sometimes my test results will reveal I have low levels of inflammation, yet higher than it should be. My doctor doesn't seem too concerned though. I do hope you get responses from others as it could be very helpful. This particular group has always been slow, but who knows, it could become active once again. Keep watching.
cableman
cableman
YES I have! But no body have gave me a explanation for my pain. They did x-rays and other test but I never get a answer. All they say is test was negative. I seems like the pain moves. Some times I can't move my arm. And my ankle just gives out for no reason. I tried to change a part on my car and my whole body felt like laying on the ground, I had to go take pain pills and take a nap. My energy gets so low sometimes I don't even take a bath for days. And so on so on so on. I was suicidal at the beginning, but I snapped out of it and start accepting the pain and fatigue. People see me and can't tell nothings wrong. But under the skin it a broken rock. As men get older their testosterone gets lo, and they lose energy. The sarcoid makes it 50 times worst. They tried all kinds of meds. But the only one that helps is the one that is most bad for you and that is prednisone
Simply_Exhausted
Simply_Exhausted
Hey, I’m new to this group. I was diagnosed with sarcoidosis 15 yrs ago and I can definitely relate to what your going through. Sometimes I’ve felt like giving up, but I keep fighting and you can too. Wish you all the best.
Alud429
Alud429
Hi there yes i have the same problems with the pain all over my body as well i have good days and bad days i wish there was a cure for this I'm so use to being active now I'm very limited to what i can do.
Citipixie
Citipixie
I have been diagnosed with sarc since 2010 but not SFN. I have had severe leg pain and weakness. I have been having the same issues with my hands lately. It is causing eye issues but no pulmonary manifestations. I moved from Texas to South Florida and so far haven't been able to find a physician that will treat my pain and weakness.