Pain Common in Systemic Sclerosis
Posted 15 March 2010 - 04:17 AM
Pain symptoms are an underappreciated issue in systemic sclerosis. Only a few small studies have examined the prevalence and severity of pain in this multisystem disorder, and none has considered whether pain and clinical variables differ between the limited and diffuse cutaneous subtypes of disease. Nancy Walsh, MedPage Today. 03/09/10. (Also see: Pain and Scleroderma)
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Posted 15 March 2010 - 10:12 AM
A couple of weeks ago my pain doctor put me on oral pain medication (I'm allergic to pain medication), and I have had a hard time with side effects. I got really sick after 4 days, so he decreased it to 30 mg. Even that has had side effects, so when we met today he said to try taking it every other day. I hope I can take it and avoid the side effects because I have to say the pain has been minimal. Has anyone else had experience with pain in that area and/or with pain medication?
ALSO, and this is what I'm really concerned about, I have had numbness and weakness in my right hip/leg/foot for a week. When I mentioned it to my doctor today he was quite concerned and said it is NOT a side effect of the pain medication. I have to have an MRI. Has anyone else had that type of pain? I've had nerve compression in my wrists and elbows, and I think that is part of the problem with the neck/scapular pain, too. (My doctor said that pain has its roots in nerve and muscle.) I can't find any research addressing peripheral nerve pain or nerve compression in systemic sclerosis. Thanks!
Posted 16 March 2010 - 10:56 AM
Does anyone have pain in the chest area and lungs? If I happen to take in a quick breath it will hurt to breath out and for a few minutes afterward.
Posted 16 March 2010 - 01:21 PM
Posted 18 March 2010 - 02:07 PM
Thanks for writing back. I had an allergic reaction to one of the new pain meds they tried, and the 2nd one caused such severe side effects we had to stop it. Now we're back at square one. You mentioned your neck pain. Have you also had the numbness in your leg?
Posted 18 March 2010 - 03:40 PM
As it happens, we have some articles on Neurological Involvement in Scleroderma. The National Institutes of Health has this to day about peripheral neuropathy:
Connective tissue disorders and chronic inflammation can cause direct and indirect nerve damage. When the multiple layers of protective tissue surrounding nerves become inflamed, the inflammation can spread directly into nerve fibers. Chronic inflammation also leads to the progressive destruction of connective tissue, making nerve fibers more vulnerable to compression injuries and infections. Joints can become inflamed and swollen and entrap nerves, causing pain.
Has your doctor referred you to a neurologist? The MRI sounds like a very good idea. The symptoms you describe sound pretty alarming.
I have similar issues but my neck pain is completely unrelated to scleroderma and is due to some vertebral/bone spur issues and disk degeneration. I am also intolerant of most narcotic/opiate pain medications, so the pain in my neck was, well, a pain in the neck! One thing my doctor did was refer me for physical therapy. Keeping the supportive muscles strong and improving my general posture has helped as did breaking myself of the habit of loading everything I possibly could fit into a large shoulder purse and carrying it on one shoulder. (My husband says the weight I used to lug around has contributed to my being the 2nd shortest person in the family. Our 20-month old grandson is #1!)
Hopefully your doctor will get to the bottom of this and get get you some lasting relief. Best wishes,
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Posted 18 March 2010 - 09:54 PM
When mine flares up really bad no pain killers seem to work & I just don't know what to do to try to relieve it, I don't really want an op but would like to know if there is some sort of exercise that I could do to try to ease it.
Posted 19 March 2010 - 09:50 AM
Posted 19 March 2010 - 10:04 AM
Posted 20 March 2010 - 11:22 AM