The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group


  • By sunshine0314 · New reply 4:32 pm
  • Discussion in Emotional support · 17 replies
  • I come from a family of 8. 6 brothers and 1 sister. I’m the youngest (the baby)!!!! Sorry so long but I’m very detailed……… August 23rd of this year we lost an aunt. I had siblings come to South Florida ...

Ventricular ectopics

  • By david71 · New reply 4:16 pm
  • Discussion in Symptoms · 13 replies
  • Dear friends First post on this forum Had been following this forum from 2011 with my diagnosis of SARCOID I am 44 yr old. from England and a hospital doctor Started as severe headache and lethargy and ...


  • By Nisha1520 · New reply 4:03 pm
  • Discussion in Living with sarcoidosis · 2 replies
  • I don't know what it is but today i feel overwhelmed. My body hurt. I don't feel good. I have one pain pill left. I don't know if i should take it now or wait. My body just feel heavy. I so can't wait ...

Sarcoidosis food and vitamins

  • By Lolamosa · Posted 4:02 pm
  • Discussion in Triggers · 0 replies
  • I am confused on what I can take, what to avoid. and triggers. I want a multivitamin that does not trigger flare ups. Also what about Omegas? Do I take Omega 3 supplements ...

Sarcoidosis is crazy disease!!

  • By Lolamosa · Posted 3:11 pm
  • Discussion in Living with sarcoidosis · 0 replies
  • I was diagnosed with Sarcoidosis in 2012. I was very fatigue, had a weird rash on my jawline, lower back and forehead. Could not walk. Feet and legs were very weak and numb and full of pain. Weird metal ...


  • By KCsarcoid · New reply 3:04 pm
  • Discussion in Emotional support · 5 replies
  • Is anyone plagued with the burning, heaviness and spastic feelings ? I hate to move and I don't know if the position of my spine has anything to do with the feelings. I have Neurosarc and I take Gabapentin ...

Arm against Harm!!

  • By priscurl · New reply 2:57 pm
  • Discussion in Living with sarcoidosis · 17 replies
  • Dear Sarcoid patients. Through patients questions and concerns raised on this forum, I continue to learn and pass on the learning. I am dismayed by the suffering and trauma patients have to go through ...

Cardiac Sarcoid - Cause of Dizziness

  • By Jim911t · New reply 2:53 pm
  • Discussion in Symptoms · 5 replies
  • Hi, I've had a PM since 2009 for heart bock, diagnosed with pulmonary / cardiac sarcoid in 2011 and had a biventricular ICD implanted 2012. I have been on 20mg pred for about a year and things have improved ...


  • By Dave-Kirby · New reply 2:14 pm
  • Discussion in Living with sarcoidosis · 11 replies
  • Just a question for all you fellow sarcoidosis suffers out there. I was diagnosed In May 2014 and started treatment straight away. My question is it possible for someone to be diagnosed with sarcoidosis ...

A Touching Supportive Letter

  • By Spicetalk · New reply 2:13 pm
  • Discussion in Emotional support · 1 reply
  • I think many can relate to this letter to The Suffering Undiagnosed. Many of the issues discussed can also be applied to the Suffering Diagnosed as well. This is a great example of how to be compassionate ...

Tentative diagnosis of Sarcoidosis

  • By melibee · New reply 12:15 pm
  • Journal · 13 replies
  • Wow, that rhymed! :-) I have had a lingering cough for about a couple of years... not even sure how long now. I have allergies and have been treated for those, as well as post nasal drip, and GERD. Lots ...


  • By Nisha1520 · New reply 11:39 am
  • Discussion in Living with sarcoidosis · 4 replies
  • So ? Can you apply for disability since Sacoradosis have so many affects on your body ...

Is it me

  • By Nisha1520 · New reply 10:27 am
  • Discussion in Living with sarcoidosis · 11 replies
  • So since I have been diagnosed with sacoradosis.I noticed alot of change in me but for some reason i feel like my kids father don't want to touch me at all. I don't know if it's me or what. It seems like ...

Gone for a while back on the board needing input on neuro sarcoid

  • By ksina · New reply 8:42 am
  • Discussion in Living with sarcoidosis · 3 replies
  • Hi guys!! I am a current sarkie diagnosed with pulmonary sarc 5 years ago, been on the up and down pred coaster and now after five years I have finally been able to gradually drop it from 60mg to 7mg ...

No Sleep

  • By rossie12 · New reply 8:20 am
  • Journal · 2 replies
  • I cannot sleep. Hot sweats and leg aches. I'm on predisone for 30 years and plaquinel for RA. I also have skin sarcoidosis. Is there something I can take. Ive been doing tylenol PM every night my body ...


  • By mghandajh · New reply yesterday at 11:40 pm
  • Discussion in Symptoms · 1 reply
  • To:kcsarcoid I just went to a different neurologist in the same group I already go to regarding increasing neuropathy in my feet. This started about 10 years ago. I had a neural flare of sarcoid 8 years ...


  • By MZBIGGREDD · New reply yesterday at 10:17 pm
  • Journal · 3 replies · Photos
  • Breathe. You Are Not Alone. There is much you can do to proactively affect the course of your issues, illness, disease and chronic pain. I want ALL Warriors who are fighting with any type of issue, illness ...


  • By MZBIGGREDD · New reply yesterday at 9:44 pm
  • Journal · 15 replies · Photos
  • I wish I could tell you about the depth of my pain. It's almost never ending, and so hard to explain. I wish I could tell you how broken I sometimes feel inside. My body just hurts so much. But it's easy ...


  • By LaiLani · New reply yesterday at 9:07 pm
  • Discussion in Treatment decisions · 3 replies
  • GM everyone, I'm looking for some advice and comfort, both of which I know is plentiful here. Tomorrow I am scheduled to have an echo of my heart. I was hospitalized last April for low 02 levels (ER showed ...

2014 FSR Patient Conference

  • By rossheartchick · New reply yesterday at 6:05 pm
  • Journal · 1 reply · Photos
  • We have been lucky as "Ohioans" to have had the Patient Conference in Columbus and Cleveland. With Dr Crouser in Cbus, Dr Baughman in Cincy & the whole crew at Cleveland Clinic we are very blessed to ...

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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About this community

The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Foundation for Sarcoidosis Research, an Inspire trusted partner.