@anon16865673 That’s great that it’s helping you then. My onset directly correlated to a knee injury (so, pretty similar) and I wasn’t exactly pushing up daisies when it happened. I was in my early 30’s and ran 50 miles a week, every week. I also lifted weights, so I was no stick figure. I’d run 15 miles at a 6 minute 30 second pace just for fun because I was bored. I was in such impeccable physical condition that when I had an echocardiogram the tech asked me during the test if I was a professional athlete. Once when I went through the full body scanner at an airport the TSA agent awkwardly remarked, “you have like no body fat.” (She wasn’t wrong.) So yeah, I wasn’t exactly old and decrepit when it happened. 
@CarterDK I was making no marks towards you, I’m sure you’re in great shape! I remember you saying that you were a personal trainer at one point. I was just referring to dr. Oaklander and Mayo Clinic’s findings that a younger cohort following trauma or surgery tend to respond best to corticosteroids. And I had a ruptured patellar tendon and lost 20 pounds in 2 weeks after surgery and my body was really feeling exhausted and like it went through a lot and then my EM started. That’s all I was saying 
. Sometimes I feel like my body hates me.
@anon16865673 No, no, I didn’t take offense. I was just pointing out that if being young(ish) and fit helped, it never should have happened to me 
and/or the prednisone should have worked. It was obviously correlated to the injury. I injured my knee and ended up with erythromelalgia at my knees, a very unusual presentation. I have only minor, markedly different symptoms that occur at my feet, which perhaps only occur because it’s downstream from the autonomic dysfunction at the knee.
@CarterDK Maybe its common for a trauma to make the body more likely to develop certain mutations or for autoimmune conditions to surface. Regardless, you found something that works very well for you and quickly. I should mention though that I was given prednisone pills with a high dosage (80mg) and that did next to nothing for me but when I received 1g IV daily for 5 days I got worse temporarily, but exactly one week after I started improving rapidly and am now on week 3 and keep improving.
Joe , Carter - wondering why you guys weren’t diagnosed with CRPS? My understanding is that CRPS is usually induced by trauma? Thank you
I find it interesting that both of you had trauma on one side, and then it spread to both sides (?) I think I read somewhere that this “mirroring” can be because the central pathways that get signals from both of the sides, can also be sending outward signals to both of the sides (something like that … that it gets jumbled up centrally).
Joe, glad you are improving. Am i right thinking you are doing 1 gram / week now (instead of daily) with no loss of benefit?
@standing_cat I had absolutely no tenderness and no sharp pain, it was only the blood pooling and heat that caused discomfort. I had crps ruled out nearly instantly by a few physicians, including Mayo Clinic. And crps is usually constant and I had clear flare ups with heat and exercise, that’s what the pain clinic doctor at mayo told me.
Thanks for clarifying!
The anesthesiologist who treats me did order a radionuclide bone scan as a diagnostic tool for CRPS. The results were normal and did not show a pattern typical of CRPS.
He did a differential diagnosis between CRPS and erythromelalgia. He said, on the one hand, that symptoms were at my knees suggested CRPS because erythromelalgia usually involves the feet. But on the other hand, that symptoms were bilateral suggested erythromelalgia because CRPS is typically unilateral. So he simultaneously ordered the bone scan to diagnosis for CRPS and wrote a prescription for mexiletine as treatment for EM. When mexiletine was successful and the bone scan was negative, it was presumed I have EM.
For the record, he thought I had CRPS initially.
EDIT: Incredibly, that all happened at my first appointment with him. My follow up was a month later and I haven’t had to schedule another doctor’s appointment for my EM since. The good people at Kaiser Permanente found him for me. (You don’t just normally go to an anesthesiologist.) He also practiced just 10 minutes from my home, which made it super convenient. The guy who I ended up working with to find a doctor was himself a pediatric brain surgeon. So I had some really smart people working to get me well.
got it, thank you for the details. glad you had such great treatment.
So I thought that I would update. I have finished the 3 months of prednisone and saw benefit during the trial, however, it turned out to be due to the addition of cyproheptadine which reduces the frequency of flares. Since then I have found a knowledgable neurologist who has added mexiletine which helps reduce sensation, severity, and longevity of flares. In the past 2 weeks I have also added feverfew, which like cyproheptadine drastically reduces flares. Between these three medications (cyproheptadine 3x daily, mexiletine 2x daily, and feverfew 1x daily) I have found relief. I now can walk as much as I please (feet get warm but there is very minimal if any burning if flares do occur). I have returned to working out 2 hours a day and to running and playing basketball. I still flare occasionally but there is no sensation and they are very minor. The steroids, however, left me with unwanted weight gain and caused me problems with sleep. Hindsight, wish I didn’t do it, but am glad I did to rule it out.
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Joe - awesome that you are improving.
I’ve tried feverfew before but thought it made me worse (too dilating for me). I am curious how you would compare feverfew and cyproheptadine, in terms of how they feel for you. A doctor brought up cypro. for me recently - I guess I never considered that one based on how I reacted to feverfew, but don’t know if that is fair.
Thanks, and again glad you are improving.
@standing_cat Cyproheptadine and feverfew are not dilating medications. They do the same things for me. I just feel that the combination allows a little more coverage than just one of them alone. If one of them made you worse, it more than likely means that you do not respond well to serotonin blocking medications. So I probably wouldn’t try cyproheptadine if I responded poorly to feverfew. Have you tried effexor or any other serotonin reuptake medications? If you do not respond well to either cyproheptadine or feverfew, you may respond very well to effexor.
Yes, I do well with effexor / cymbalta. Thanks for your reply.
It does not seem to cover everything for me. I am hoping that a calcium channel blockers helps even more for me seeing as my feet feel like ice cubes until about 9pm and then they flare, warm up, and then are a normal warm temperature throughout the night without flaring. I am kind of afraid to try it though.
Interesting in 2014 I injured my foot running and that’s when my EM symptoms mildly started.
Thank you so much for posting this article! I have recently developed EM and having a heck of a time finding anyone to help me. Two neurologists, a GP, and a rheumatologist have all shrugged their shoulders and said, can’t help you, good luck.
I have a new GP now and am hoping to go to her with everything I’ve learned and list of treatments that people have found helpful and see if she’ll work with me to go through the list. Trying to put together that list though has been daunting. There are so many things that work for some and not others. This paper saves me HOURS of research!
If I had one piece of advice for someone trying to find a doctor willing to trial and error treatments with them it would be to print out scientifically reviewed and published papers like the cumulative review paper I posted above. Making a list of treatments on a piece of paper and showing it to your doctor will not convince them to try anything. Make sure to present them with scientific papers, print out a copy for them to keep, they can periodically review it to try new things. This cumulative review paper has referenced scientific papers for each treatment that is mentioned in the paper so any doctor should be able find everything they need in this paper alone. Taking pictures of your EM during flares to compare to figures in papers is also helpful. Best of luck in your search for an effective treatment!
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Good advice! I have hopes for this doctor. I also have chilblains and no one around here has ever heard of them. (Started with Raynaud’s, then added chilblains, now EM too.) She is the ONLY one who went and looked up chilblains between my visits. This one may be a keeper!