[BZ91]

Sorry for the length, I'll start with the questions if you dont want to read my novel..

How did your drs determine you had RSD, and how long did diagnoses take? How did it first present itself?

I was diagnosed with raynauds years ago, and I believe i have it but in my hands not my feet/ankles/legs. Idk, it just feels and acts differently. Pain is one of the huge differences..About 2 years ago, i hurt my legs in a car accident. They got all mangled about everything while my head smashed through the windshield. Since then swelling and pain has progressed significantly, with a major decline in my condition over the last couple months.

My new pcp (i only just got insurance back for the first time in 2 years btw) touched on RSD, but wants to basically test and retest everything else in the world first. He didn't even look at my feet, whereas the PA asked to (young peppy thing) and literally freaked out in that ZOMGAWSH way
I spent several minutes arguing with him why it wasnt raynauds, him FINALLY concluding i was probably right and thats when he mentioned RSD. My ex's sister has it in it's most severe and debilitating stage and she says mine issue is exactly how hers was at its beginning )=

How exactly is it figured out if theres no test for it? I see a pain specialist on the 9th so maybe he'll be of more help but I guess I'm just worried.

The worst thing in my life happened the other day, I was walking through my kitchen and everything just swelled and seized up..My feet/ankles were black and contorted and I was stuck on the floor screaming for literally hours. Even though things relaxed I still couldnt walk the rest of the day. Not just because of pain, but my legs just wouldn't work..It seems theyre getting weaker and weaker and more prone to spasms. I hate it because I cant work out any more, and I was extremely fit..

when they flare up they range from lobster red, radiating heat and sensations of being on fire to purple/gray/black and ice cold, its a different kind of burning feeling..almost stinging I guess. A bit like the bones are broken too (having broken mult. bones this is the best I can compare it to). The skin on my toes seems to have...died...too, for lack of a better word. Its all crinkled up and wrinkly, there was a greyish-brown patch on the large toe where the skin is worst, i picked it to death and it just revealed more dead skin underneath..Idk if RSD does the cold thing? even when not swollen and freakishly colored I tend to feel painful electrical sensations and deep aches and spasm-like feelings.


Le sigh...I really hope it isnt CRPS though. based on what I've heard, it sounds like I should hope for anything but.

[Swatgen27]

[QUOTE=BZ91;741388]Sorry for the length, I'll start with the questions if you dont want to read my novel..

How did your drs determine you had RSD, and how long did diagnoses take? How did it first present itself?

RSD is a strange disease, as each case seems varry so I understand your confusion.
First to answer your questions: It took me 2.5 long and painful years to be diagnoised with RSD. My case started gradual and the disease slowly progressed over the last 4 years but got really bad at 2 years, my legs looked normal until the two year mark and then they turned purple and ice cold. I was injured 4 years ago by an intramuscular injection, and the first symptom was sever pain in the right hip and buttock along with numbness. After a month, the pain moved into the thigh, then knee, calf, ankle, and bottom of foot ect. After a year, the disease moved into my left leg, and at year 2 I began having skin and tempature changes. (The first two years they thought I had MS).
There was numerous tests that were done that supported the diagnosis RSD which were as follows:
1) Oxygen Level Test (The Dr. performed and oxygen saturation test in my legs and it came back 68%. My uper body was 98%
2) Nerve Block- My legs were ice cold and purple and before the Dr performed a nerve block a thermastat was attached to my legs. As soon as the nerve block was performed, the tempature of my legs increased to normal levels.
3) Sweat tests- A machine heats up your affected limb in a small area and with a case of RSD the body sweet mechanism (Sorry Im not in the medical field) acts abnormally. I sweat all the time :0(
4) EMG's
5) Bone scans

As for the other things you mentioned, when my medicine regiem was not effective I had:
Severe Spasms that were 24/7
Severe muscle pain (Felt like I over excersiced my legs times a million)
Electric shocks
Numbness in hips and toes (paralysis in my toes)
Severe bone pain (Felt like someone took a sledge hammer to my legs)
Sleep disturbance
Feeling of extreme preasure
tearing sensations.

I wish you luck and I hope that you feel better.

[daniella]

I am sorry about your pain. Welcome to the boards though this is a very warm community.
I do feel it is important to rule out other conditions. Some like myself have multiple conditions going on. Has your doctor suggested seeing a neurologist or have you? I would see one and get in asap. Items like mri,emgs,etc may be needed.
Many doctors have a different view on how tests,procedures or symptoms will dx rsd. Is the pain doctor you are seeing one who deals with RSD a lot? If you do have RSD I feel this is very important.
I hope you get some answers and relief