Hi everyone, I'm new here and was just diagnosed with sarcoidosis in August. My question is has anyone experienced rib/side pain with this disease?
I'm not sure how long I've had sarcoidosis, but I've had left side pain for over 3 years now. It's a sharp/stabbing pain only on the left side when i make certain movements such as bending over and standing back up. It also is painful to the touch on the lower "floating" rib. I'm worried maybe my spleen or pancreas is enlarged, or it's something worse and unrelated to the sarcoid.
Any input would be appreciated!
I suffer pain in my rib cage most mornings! At its worst I feel as though someone has taken a baseball bat to my ribs overnight and rammed it between at the front. I also have a couple of points that if touched leave me hanging off the ceiling! Hope this helps!
Thank you for your reply! It makes me feel a bit better that maybe it is related. Ever since I had my daughter a year ago, I've been increasingly worried about my health. I can't help but think the worst, but as annoying as the pain is, I'd be happy to know it was just another symptom of the sarcoidosis.
Hi Gwens,
Before I was diagnosed with pulmonary sarcoidosis I had excruciating pain on both sides lower lungs. Stabbing pain, like somebody was sticking a knife in me. They thought it was renal colic. After a ct of lung and abdomen they diagnosed pneumonia. That was December 2015 and I wasn't diagnosed until March 2016. Just moving in bed or any little movements at all caused it. When I was diagnosed I did have spleen and liver enlargement and that hasn't really improved since my last ct in June. It may be part of the sarcoidosis. Once I went on the steroids the pain resolved.
Where do you have the sarcoidosis? Hope you get relief from the pain.
Regards,
Polly.
I was diagnosed in Oct 2016. I also have rib pain, so pleased you have mentioned it as no one else has. My CT scan showed my pancreas is enlarged but looks normal. I am not on any treatment.
Hi Gwen,
Yes it is the sarcoidosis, I have had serious pain for 2 years I have been on steroids for a year it was a last resort for me. My spleen had doubled in size I also had it on my liver and lungs. The steroids worked and shrunk it down to size however I had been weaning off them and now because I had gone to low the sarcoid came back.
Hi Polly,
I also have pulmonary sarcoidosis. I am currently taking 20mg of prednisone daily which has helped with my joint pain, but the pain on my left side has not improved. Besides joint pain, I was luckily symptom free. The nodules on my lungs were found by accident after an xray (to try to figure out the rib pain) so I then had a ct scan and then a biopsy. The ct scan was of the chest but I'm not sure if the spleen or any other organs were visible.
Thank you for your reply, I'm glad your pain has resolved!
Thank you for replying! Did you feel any pain on the left side because of the spleen enlargement?
Hi
Yes I did, when the steroids started to work which took about 5-6 months the pain eased I was on 40mg a day and then weaned off however I got to 3 mg a day and was delighted but I was suffering really bad from headaches and the pain became worse so my specialist said because I had been weaned off too quickly chances are my sarcoidosis had come back and upped my dose again.
That's a shame that it came back! I go to see my pulmonologist on Thursday to talk about how treatment is going so far with the prednisone. At my last appt he had mentioned switching to methotrexate but I really don't want to take that.
Maybe I'll see if he will allow me to continue the prednisone for a while . I've only been taking it for 2 months so far.
Yea it is but if it did come back the way he has told me that it has then this is my 3Rd time.
Maybe have a chat because I believe it takes a couple of months before they really start working. My bloating and weight gain didn't start coming on for at least 2-3 months my appetite grew and my mood and tiredness changed but the positive side is that they worked and shrunk it down to a save normal size. I may need to stay on them for much longer and will prob suffer with the pain for longer but it's just part and parcel of it, I just hope it doesn't get worse or last forever.
Thank you for all of the info! I've really been watching my diet and trying to exercise more to avoid gaining weight so I was thinking I was just lucky that I haven't really gained any yet. But I guess maybe it's still too early 
I'm so torn because I also hear all these bad side effects that the steroids can have after long term use. I guess it's just one thing or another. Thank you again, and good luck to you. I hope it goes away for good soon!
Was your CT scan of the chest that showed your pancreas? I'm wanting to get another CT scan of my abdomen to try to see some other organs in hope of figuring out what exactly is going on with my left side.
But maybe some of it was visible on my chest CT. I don't know exactly what they were able to see besides my lungs.
Thank-you gwen I wish you luck to, just try stay positive sometimes it is hard but think of how they are going to help you. I didn't have a choice it was steroids or nothing. But the weight gain and bloating I can deal.with.
Hi Gwen,
My side pain resolved but I'm now left with pleural thickening which causes pain too but not as bad. I feel it when I sneeze, cough, yawn. Unfortunately, that doesn't go away.
I too gained weight after a few months from the steroids but they help and it will come off afterwards. We need to stay positive. I found a book called Coping with prednisolone and their side effects. It makes you feel normal especially seeing it written down. The authors also give you a healthy eating plan to follow, in saying that I haven't quite got that far in the book.
I have also attended counselling as the effects from the steroids were scaring me at how I was reacting and behaving. I would be short tempered but this was on a whole new scale and I needed to talk to someone outside of my husband and family. I have had two sessions and it has really helped.
Hope this helps.
Regards,
Polly
Am truly shocked by the reaction you had to your steroids. I am so determined to manage without and so far have been able to with my Drs blessing as well! I wish you all the best as it must be so difficult.
Thanks Rachael,
I wish I could have done without the steroids but I don't think I would be as good as I am without them so I just have to put up with the effects.hopefully going back to work next month which I am so looking forward to. It's good to be able to plan and look forward.
Hope you are keeping well.
My sister suffered pain in her left side associated with, what she thought to be a rib sticking out, when she moved her upper body in certain positions. I watched her suffer with it multiple times before and after her diagnosis. It was like she had to hold her breathe to get through it and the rib or whatever it was sticking out would lay flat again. She complained of pain in her side for several years.
And it was related to sarcoidosis?
Apparently. .there seems to be so many undocumented symptoms of this disease.