RSD or Fibromyalgia?
 

Well, I saw my primary care doctor yesterday, and she is questioning the diagnosis of RSD now. She is sending me to a rheumatologist, and would prefer that I go to the Mayo Clinic as opposed to the Cleveland Clinic. I sent an email to my Nurse Case Manager to get her thoughts on this.

I am almost done with my 6 weeks of therapy. It has really been hell. I don't see an improvement. The only thing I really noticed was that after using a walker for almost a month now, it does make getting around a bit easier. When I don't use my walker though, I think I am more unstable then before. I hope its just a different feeling and I'll get used to it soon.

It is so weird, but we never got to the "water/pool" portion of the physical therapy. Previously, I had a doctor write out a prescription for water/pool therapy, but never got to that point either (I had to go in for surgery). The therapist is checking with the pain management doctor to see if he wants to continue with therapy, to start the water/pool part or if he wants me to see first in May.

I just realized that April is almost over. Another month of my life has gone by, and my time has consisted of therapy appointments and doctor appointments. I want to have fun. I want to laugh. I want to enjoy being outside, I want to be human. I guess I just continue following the path the doctors are recommending, hoping that there is an answer somewhere.

So, is there a noticable difference between RSD and Fibromyalgia? Is it possible to be suffering from both? I hope the rheumatologist is someone that might help, or even offer a true diagnosis. I hope that she isn't just another appointment to pass a few more hours of my life.

First of all, I wanted to say I'm so sorry you are feeling that way. I can relate all too well. Some days, especially lately, I wonder why I'm even bothering with the therapies since I see no noticeable benefits.

American RSDHope has a page comparing and contrasing RSD and fibromyalgia, if you've not already seen it.

I'm not sure I'd go with a PCM's recommendation over the specialists, but then again, with my particular PCM, I might, since she is so involved in my day to day care. Did your PCM mention why she wanted you to go to Mayo as opposed to Cleveland? I guess I can see that it would make sense if you are still trying to find a diagnosis.

Aquatic therapy is nice. I'm not sure whether it's actually helpful or not, but I'm not sure that anything I do helps. Then again, who knows how bad it would be if I stopped all of the meds and therapies. Hard to say.

Have you told your PCM about your feelings re: life in general? Depression and anxiety are both common in RSD patients. She might be able to help with it. :hug:

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.

I'm sorry that you are going through all of this and I can totally relate to feeling like you want to have your life back...the fun. My boyfriend has been a blessing for me in giving me a sense of normalcy even with all the problems and the pain. He makes me laugh...and these days that is just priceless.

I find it odd what you said about the pool therapy (ie not making it to that part). When I was told to do pool therapy that's where we started. It was much easier to do most of the exercises and walking in the pool...stuff I couldn't do out of the water period. The temp of the pool was the most difficult part of that pool therapy since it wasn't very warm. But we started out with 2 days in the pool and 1 out of the pool each week, then after a few weeks went to 1 pool day, and then were totally out of the pool. There was a progression with that and it worked for me to get me walking again (until this new set of problems started).

I've always sort of wondered about fibromyalgia too...but I have always thought that the biggest difference was the level of pain with the RSD is so much higher. I know a lot of the medications are the same.

I hope that no matter where you end up going, Mayo or Cleveland Clinic, that they are able to help you. Things will get better...we have to always have faith in that. Good luck!

Could it be that you have both? Many of us like myself have more then 1 dx. Sometimes that can add confusion to treatment too. I went to Cleveland Clinic for RSD and did not have the best results there. I know someone though who did have good results so everyone is different. Mayo I think I heard will have different specialties look at your case which may be good in terms of ruling out condition and dx. I am not saying not to go to CC just my thoughts. I would ask the treatment people you have now why you have not tried pool therapy? Hope you feel better

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

Interesting...
 

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.