I went to a fantastic Rheumatolagist when they were not sure what was wrong with me in the first place - they thought it might be lupus or some weird arthritis. They were tossing around RSD, Fibro, neruoma, various things. I'd been to a neuro, a foot surgeon, a pain management doc. The Rheumatologist was next. She diagnosed me with Fibro **AND** RSD. That was 10 years ago, and I still see her. She doesn't really help the RSD, but she gives me trigger point injections when the fibro stuff gets tied in knots really bad. She was very much in favor of me stopping working and was great with my SSDI application. She is board certified. If you go to a good one, I would say it cannot hurt.

I've had symptoms of Fibro since I was very young, and definitely since I was 17. I'd say the difference is Fibro = stubbing your toe, RSD is like having a truck pinning your leg. "They say" most people with RSD develop Fibro. I have also heard Fibro is in the muscles and RSD is the same but in the nerves - but since we think I had Fibro for at least 20 years before I got RSD - to me it hurt - a LOT - but is not even in the ball park of RSD. So I don't buy that one.

But then I have not found any pain med that has helped me with the RSD, so that may color my judgement. I can take Aleve, Ultram, or Vicuprophen and it will help the ache from the Fibro I had when it flares up (the pain I have had since my late teen years) but none of it touches the RSD pain. The two feel different. Same as Epsom salt soaks, trigger point injections, TENS unit, etc. will help the Fibro stuff some - not the RSD.

I don't know if Mayo would be better than Cleveland for RSD. Cleveland has a lot of experience. I've PM'd you the doc that I have seen at CC and been happy with.

daylilyfan, I too have RSD and Fibromyalgia, I would like to know who in Ohio treats yours? I don't think my doctor is very aggressive in her treatment. I am desperate for help.
Thank you

I don't put Dr. names in the forum. Only in Private messages. Once you have posted more here, you will be able to get private messages.

If you contact the RSDSA, they can put you in touch with support groups in Ohio. That's a good way to get a doctor reference for the area.

Once you are able to get PM's, send a message to me and I'll give you more info.

daylilyfan

I, too am wondering if I have both. After being diagnosed fibro sept 2012...MVA 08 and cervical fusion July 2012, that's what my rheum ruled it out to be. I am not the typical "tender spot" person but more other symptoms and severe nerve and bone pain especially in my hands and arms. Now swelling, temp changes, inflammation and redness, drastic increase in pain in which pain meds and lyrica won't touch, and heat/cold sensitivity. Sometimes in my legs and severely tender to touch. Does this sound like fibro or rsd to you? Desperate for relief...I understand wasting your life and time at doctors ...I have a rheum appt tomorrow. Any thoughts welcome. My hands are my livelihood

Patti, I have private messaged you. Check your notifications.