Sarcoidosis pain: Does anyone experience all over pain on their skin?

Hi @tammyak22, I'm tagging fellow members living with sarcoidosis like @jsjaast @sharonp51 @ryman @yturner @martindale @shani @rj4group @ess77 @dsisko @jeanne5009 to share their experiences.

You may also be interested in this related discussion:
- Sarcoidosis Treatment: Tips for an effective path to better health: https://connect.mayoclinic.org/discussion/sarcoidosis-treatment/

Tammy, what do you do to help manage the pain?

I did not know there was a name for this. When first I found that I had allergies to not just grasses, etc., but to pork, beef, eggs, poultry….chicken, too. I was in my early 40s before being able to afford anything other than the usual walk in. My skin would hurt. My boyfriend took it personally. We stayed together but that’s how strange it was and doctors had no clue. It wasn’t constant but YOU are the first person I’ve heard this from! Wow….I’m not crazy, am I? I just suffered until I could find a doctor to prescribe some mild pain pills. It comes & goes but….mostly something stressful starts it up.

Yes, and my body also is so hot most of the time and also itches. Haven’t found anything yet. Not sure what is going on. Have tried phototherapy but that made it worse. Heat is actually heating up my clothes and my bedding etc. took temperature but it was only 97.5. Anyone experiencing this?

I was on narcotics through pain management but I had to stop due to the fact that I was afraid I was getting addicted. Now I have a prescription for medical Marijuana. It helps more than the pills did.

I have the heat and itching too. I attributed that to liver disease though.

@tammyak22, @marilynkay, @colleenyoung, @sharing, and all...Well, my goodness. Thank you all for helping me with these skin issues I've had for so many years. With no help or attention from doctors to this point.

I was diagnosed with pulmonary Sarcoid in 1987, and now at 76 years, I thought I'd pretty well dealt with this illness. I'm currently experiencing painful, burning skin on my arms, at times with a weird rash. The symptoms come and go but are now most often present. It includes heat, itching at times, and deep aching in my wrists and hands which are full of arthritis. Seems to be worsening. There are nodules under the skin and often a deep pain inside my arms, occasionally a searing, severe burning. My PCP referred me to Mayo Clinic Florida, where I'm treated for multiple illnesses. I don't have a doctor who deals with the Sarcoid overall, although the pulmonologist works with me on my lungs. My PCP referred me to dermatology, but I haven't seen anyone to date.

It was late last year when he referred me and appointments were extremely difficult to get, so I'm just waiting. I had no idea this is really what is happening. I'm shocked and will call my rheumatologist at Mayo tomorrow morning for advice.

Geez, Louise...This nutty skin issue has become a difficult challenge for me. I'm also experiencing iron deficiency anemia, with low ferritin levels every few months. I have IV iron infusions after the ferritin levels go down more which help dramatically. But, don't last but several months. I had 2 infusions in Nov. 2022, and now my gums are white, I'm very pale, weak, and dizzy and my balance is worse...pretty much all the anemic symptoms. I'm having bloodwork this week and should begin dealing with this issue again. I expect infusions to be again in my future soon, thankfully. I welcome them...Would like to know the underlying cause of this issue. My intestines don't absorb B12, I give myself shots weekly, nor iron, so my entire body becomes starved for oxygen and all the other goodies it needs. Wonder why and can't something be done to correct the issue.

I'm addressing my intestinal issues with Probulin probiotic colon support and Gundry MD biome supplements. They are truly helping with many issues, but obviously Sarcoid is active again, and the anemia. Is it related to Sarcoid at all??? So many questions we have when we walk this autoimmune journey and have so few answers.

I'm off to rest and enjoy my Bi-pap and oxygen, a good night's sleep is special. Perhaps tomorrow will bring the beginning of the skin issues answers...I wish for you all answers, freedom from pain and anxiety, be blessed as you go through this walk. elizabeth