Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

4,403 Members
50,123 Posts
0 Online
Muscles & Bones
/ Fibromyalgia Support Group

Change in dx...

mixedupmelly
mixedupmelly
So I finally managed to get in to see my neuro when I was in the middle of a full on flare up yesterday, and after seeing how my feet looked, he changed my dx from fibro to reflex sympathy disorder (RSD). Red purple splotchy feet that are ice cold to the touch, shiny skin, and spasms so bad both feet are turning in and my toes are turning under. Fortunately he said the treatment protocols are almost the same and the tests are almost the same. I've been living with this monster for five years. I've been monitored for lupus because of the face rash which after reaserch I found out is a symptom. I've been told I have transverse myelitis -which as of my last MRI was completely clean praise God- so I'm now in remission, I've been told I have fibro, and it had another doc tell me it was all in my head.
Sorry about the rant. It felt good to finally get that out.
Anyone else have something similar happen?
Victorious
Victorious
I hope now things will start looking up for you.

Best wishes
LeoX3
LeoX3
Nope, but RSD isn't that unusual a dx to be confused with FM or vice versa. (FM is why I'm neurotic and get fifth opinions---five docs means there's a tie-breaker in there somewhere, LOL.)

If it might lead to an effective treatment, then I hope this change in dx will be ultimately for the good.

Rant away. I was told my torn pelvic tissues were my endometriosis. Really? Wow. 5 months of delayed treatment and.... 3 years after the injury, I still am quasi-disabled. *grrr*

Yeah. Docs. Dxs. *headshake*

Big smiles and hugs and be ind to yo and so glad taht MRI is clean!
MAGICpill
MAGICpill
Hope you find the right treatment and get relief.

I am proud you kept searching. I went to many specialist also, I wasn't about to just take a reg dr dx, when it could be something else and I could be getting help.

Wishing you the best.
fibrolizzy
fibrolizzy
Bless your heart! I've researched RSD, trying to discover an answer for my foot pain and swelling. Mine looks a little dis colored, but the skin isn't shiny, I don't think. I am going to ask my doctor about that on Tuesday when I see her. I'm desperate to have a reason for my horrible pain and swelling.

How did it start for you? I wonder if maybe I have the start of it, and the shiny skin could come layer. Any info is appreciated.

Thanks! And good luck to you. I know you're at least glad to have a reason for your pain.
mixedupmelly
mixedupmelly
Fibrolizzy, mine started with very bad cramps in my right leg which is where the bulk of problems are. The cramps were so severe my toes stayed curled under, my ankle almost dislocated, and I had muscles rip in my calf. Then it moved to my thighs and into my other leg and eventually into my arms. When cramps would hit, it looked like someone was shoving their fist into my calf muscle. When the cramps went away I had the overall joint/body aches that are normal for fibro with the fatigue and fog. My feet get ice cold though and turn blue purple or get really red and get very hot. I also have dermatitis that won't go away and gets worse when I flare, and the reaserch I've done says that's normal. I also have the fog and fatigue and tender points, but some of my joints are getting stiffer. I started on Wikipedia and googled from there. It also said that not all symptoms are present in all people. Hope this helps.
sunsetzzs
sunsetzzs
Wow... glad you finally got some definitive answers! I do not know a lot about RSD, but I hope with the dx, there will be some knowledge about how to alleviate your symptoms.