Has anyone been ultimately diagnosed with RSD instead of Erythromelalgia? I just saw a new doctor who is familiar with both and feels that it is RSD. I have a lot to research and am cautiously optimistic that we have landed on the correct diagnosis. It seems he felt that it was RSD because of my widespread systemic symptoms which include a lot of generally inflammatory or immune-like responses. I also showed abnormal autonomic nervous system testing on cardiovascular function (which was all he tested). He says the EM symptoms are a result of the RSD. Does anyone have experience with this? Thank you all for your help!
I was previously diagnosed with RSD after a car accident. I saw so many drs. I even went to a RSD specialist in think he was in South Carolina. He said I didn’t have it. I also have lupus, fibromyalgia and Raynauds. Do you have it on both legs, feet? What kind of dr. did you see?
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This was a cardiologist who specializes in autonomic dysfunction. I have
actually had system-wide symptoms including autonomic symptoms of
temperature and blood pressure instability, flushing, sweating, eye dryness
and blurriness, etc. I have swelling (edema) and redness in my feet, lower
legs and hands and forearms off and on all day. And, of course, burning.
Sometimes mild, sometimes awful. I have also had episodes for several weeks
where I have had swelling, burning and redness in other areas, such as my
face, ears and back. I have also had joint/bone pain and stiffness (perhaps
just a result of the swelling), but not always with the swelling. There
have been times where the pain has been stabbing (particular in my ankles
and wrists), but it is mostly achy and sore or as if the bones in my hands,
feet, forearms and shins are loose and crushed. It’s so hard to explain it
all, isn’t it? Anyway, I never looked at RSD because it always talks about
such severe pain and I have only had brief episodes of severe pain. It’s
usually distracting, but not horrendous.
Karrick, how can you be certain you have EM and Raynaud’s when there is not a definitive test for either and both share similar symptoms? How do you know where one ends and the other begins?
My doctor tested me for Complex Regional Pain Syndrome (formerly Reflex Sympathetic Dystrophy). Like you, I never thought I had it because CRPS patients typically have A LOT of pain. They rate a very high pain score, usually constant, and I don’t fit that profile. Nonetheless, my doctor ran a three phase bone scan to look for abnormalities that would suggest CRPS. He didn’t find what he was looking for.
This link explains how bone scans are used to diagnosis CRPS:
http://rsds.org/how-are-bone-scans-used-in-the-diagnosis-and-treatment-of-crps/
I’m also a little puzzled why your doctor would say CRPS is more likely because of systemic symptoms when CRPS is typically confined to a single limb. That’s what I’ve read and that’s what my doctor told me. My doctor said because I had bilateral symptoms it made CRPS less likely.
Hi Carterdk,
I agree… My symptoms do not seem to fit. Namely because I do not have the
constant, high levels of pain and also because my symptoms are symmetrical,
despite my left side symptoms always being worse. I am only guessing how he
came to the conclusion that it is CRPS and was thinking that the
system-wide symptoms and autonomic dysfunction which was evident in the
cardiovascular testing, led him to tell me that EM is just a symptom of
that. When I questioned the fact that I was not in the type of pain I had
seen associated with CRPS, his reply was that it will likely get worse as
time wears on and his plan of treatment was to attempt to “re-wire” my
autonomic nervous system in an effort to prevent worsening symptoms. May I
ask what your current diagnosis is? Is it idiopathic EM? This is all so
confusing. I think the only thing I know for sure is that I have autonomic
dysfunction, but then, isn’t it likely that most people whose EM is not as
a result of genetics or a myeloproliferative disorder suffer from autonomic
dysfunction? I’ve seen the articles on Small Fiber Neuropathy, which is
connected to both… So, maybe it’s just that. Idiopathic Small Fiber
Neuropathy. I have not had the genetics testing, but since the burning and
swelling began in my middle age years, I don’t think that’s necessary (if
I’ve correctly understood the limited information I’ve read so far).
Just from what I’ve read, I would think bilateral pain, redness, stiffness, and swelling in multiple joints would make an auto-immune arthritis more likely. That was one of the major reasons my diagnosis didn’t line up well with arthritis. My symptoms were confined to one large joint and absent from my hands/feet. X-rays didn’t show any cartilage erosions in my hands/feet, either.
My diagnosis is currently erythromelalgia, but I still have some doubt. My symptoms began and remain confined mostly to my knees. They began after an injury (which is the primary reason my doctor thought it likely I had CRPS). My doubt arises from the fact that erythromelalgia is a rare condition and I have a presentation that is unheard of. There is no documentation in medical literature for anyone having it only in the knees. No one on this site has it primarily in the knees other than me. I am the only person out of 7 billion to have this unusual presentation of a rare condition? I have doubts. It seems too extraordinary.
Yes, my symptoms do seem to point towards an autoimmune condition. I’ve
been tested for them a few times over the course of the last year. There is
no clear picture yet of any particular diagnosis, so I guess it’s a wait
and see. I hate the not knowing, as I’m sure you do, too. I can definitely
see why your doctor was leaning towards CRPS. So, it started in one knee
after an injury and now is in both? That would be the progression of CRPS,
if it were that. Well, according to the link you posted above, it is
possible that a bone scan would not confirm CRPS. And, if the doctor I saw
is correct, it does not always start as dramatically painful as is often
described. So… Maybe it is CRPS? By the way, I have had swelling and
redness over my knees, too, but it has not been as frequent and hasn’t
burned or been achy like the other areas. Have you attempted any
treatments? Perhaps that gives a clue as to a diagnosis? And, yes. You
would be quite exceptional if you were only to have it there. I guess it’s
not impossible, though, right? Have you seen someone who specializes in EM?
I know that is very hard to find, but perhaps that could help shed some
light.
I responded to a drug named Mexiletine, which my doc said would exclude CRPS.
Do doctors know enough to know what will work and not work? I’d imagine
that anything that helps neuropathic pain might help either EM or CRPS
since both can involve neurological dysfunction.
I have no idea. There are some articles in medical journals that have shown Mexiletine helping people with erythromelalgia. He said he had treated EM 5 times before and seemed pretty knowledgeable.
I think I might throw out a question in discussion about Viagra. I had been given a prescription for that one time before all this started and have avoided taking it since on the idea that a vasodilator would make EM worse. However, I decided to try it and it surprisingly seemed to have no affect on my knees at all. I don’t know if they were any better, as they often don’t bother me, but they certainly weren’t made any worse. I would think a powerful vasodilator like Viagra would almost certainly make EM worse.
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My thoughts exactly. I’ve only very recently started taking 25mg a day. Prayers for any success!