Chronic rib/side pain?
Posted , 7 users are following.
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!
0 likes, 20 replies
rachael88657 gwens
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gwens rachael88657
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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.
polly79837 gwens
Posted
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.
gwens polly79837
Posted
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!
joan50264 gwens
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gwens joan50264
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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.
AmandaPC gwens
Posted
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.
gwens AmandaPC
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AmandaPC gwens
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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.
gwens AmandaPC
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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.
AmandaPC gwens
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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.
gwens AmandaPC
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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!
AmandaPC gwens
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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.
polly79837 gwens
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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
rachael88657 polly79837
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polly79837 rachael88657
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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.