Hi everyone. I got diagnosed with Erythromelagia officially about 2 months ago. I have been having symptoms since this past January. Let me tell you my story.
It started out one day I was sitting down in the evening and my left foot turned red and was swollen. Very hot to the touch. Nothing like this had ever happened to me. Every day after this, around the same time 5-7 PM The foot would swell and turn red and hot. Shortly following during the day, my right foot would build heat as I would be active. My left foot would follow shortly after with it. When I would elevate, the swelling and redness would slowly dissipate. If I got up again and walked, the redness and swelling would come back right away.
It is pretty much the same present day. I had to stop most my duty’s at work because after walking for about an hour or 2, my right foot would start heating and other follows it. They get sweaty with the heat if kept in my shoes. Then in the evening, my left foot is most prominently red and swollen if I don’t stay off my feet. If I’m laying on the couch elevated, it will go away. I can’t say I have “pain”. Just discomfort and burning sensation. Like someone attached a air pump to my foot and is blowing it up. My veins pop out during swelling and is very uncomfortable.
I have other symptoms that may not be related and wonder if anyone else experiences it. Example… If I work on my feet for 4+ hours and just soldier though the heat and discomfort, I will experience stiffness in my muscles. Mostly in my calfs/legs. But also in my arms, cheeks/face. Following morning will be hard to get out of bed and hard to take full steps. (I’ll loosen up during the day.) If I am to lay on the couch for 2 days with little activity. The stiffness will go away mostly. But always come back if I repeat too much activity. I’ve had every blood test under the sun from the rheumatologist and all has been normal, also nerve study and brain MRI from Neurologist and all normal.
Just wanted to share my story and see if anyone else has these symptoms.
Here is a post of mine from a few days ago. All of my blood tests and MRIs were normal, however, a skin punch biopsy that I pushed for was positive form small fiber neuropathy in my left foot where my symptoms started. Obviously I am not cured yet, but I am going to Mayo Clinic in 2 weeks where they will hopefully be able to put it in remission. I would push for this biopsy test as most EM has been recently shown to be a symptom of small fiber neuropathy which always has a underlying cause, it’s just a matter of finding it which can be difficult.
Treatment for small fiber neuropathy consists of managing the underlying cause when identified. For instance, controlling blood sugar in individuals with pre-diabetes or diabetes. If the neuropathy is idiopathic, treatment can only manage symptoms. There is no treatment currently that can reverse small fiber neuropathy.
I’m afraid Joe may have unreasonably high expectations if he thinks the Mayo Clinic is going to be able to reverse his small fiber neuropathy. Unless Mayo has an unpublicized experimental treatment Joe is privy to, they’re not going to be able to reverse it.
A significant percentage of small fiber neuropathy cases are idiopathic with no identifiable cause. Johns Hopkins says it’s 20%. A 2008 study found it to be 40%. If you’ve had a battery of normal blood tests and still have neuropathic pain caused by small fiber neuropathy, the chances of you being in that idiopathic group are likely high. But maybe you’re pre-diabetic and its just not been identified yet? I saw in your profile that you have high blood pressure. You may have the beginnings of metabolic syndrome and its cluster of conditions.
My medical record so far with all the blood tests, nerve study’s, leg ultrasounds and brain MRI show me to be in shining perfect health. I guess the Erythromelagia is a primary at this point. I am getting a Lyme’s disease test today to rule that out as it can cause strange neurological symptoms and burning feet from what I read and from what one of my family member experienced.
Not identifiable does not mean there isn’t one, there is always a cause of nerve degeneration. I also don’t appreciate you bashing on my hopes as that’s what keeps most of us afloat with this, it seems very contrary to this group. My hope is sound as my symtpoms started out after left knee surgery and we’re only on my surgical foot for the first few weeks and then spread to my other foot and my SFN test was only positive in my surgical foot. Based on plenty of research and studies, there is a high likelihood that it was caused by some response to the surgery which Dr. Oaklander and some other studies have shown that immunotherapy can be beneficial. I am 24 and start medical school next year where I’ll be on my feet alot so I will continue to stay hopeful or else I will have to consider a career change which I don’t want to do, especially this young.
True, but unidentifiable by current medical techniques precludes treatment of the underlying cause.
I also don’t appreciate you bashing on my hopes
That certainly wasn’t my intention. You won’t be the first community member to visit the Mayo Clinic for erythromelalgia. We’ve not heard reports of Mayo using immunotherapy to cure small fiber neuropathy induced erythromelalgia, but they are a leading research institution. The medical literature is replete with instances in which Mayo provided symptomatic treatment of erythromelalgia that offered a functional cure or something close to it.
or else I will have to consider a career change which I don’t want to do, especially this young.
There are individuals who have attended and graduated medical school with greater health challenges than the one you currently face. It’s nonsensical to even think you would have to change your career path as a result.
just a note for the “idiopathic folks.” i was one until i pushed for a b6 test and discovered i had b6 toxicity. there are facebook help groups that have informed all of these conditions/treatments/medical approaches for me…one on b6 toxicity, one on em, a couple on small fiber neuropathy. overall, conventional medicine really let me down on my diseases and conditions (from autoimmune pancreatitis, to the neuropathy i now have), so i’ve learned it’s up to me to keep digging even when no cause is easily identified. there is a reason (or reasons) why our nerves became inflamed…we just have to keep looking. I got em before i realized i had sfn…turns out it was there, but low level but then came on loudly 2 years ago. My internist had me on a prescription b for elevated homocysteine, and it was slowly poisoning me. I’m incrementally improving now that i’m working the functional medicine side to detox from b6 and other neurotoxins (and btw, i work in conventional medicine; it has it’s place but less helpful for mysterious, rare and chronic conditions). I’ve analyzed my genes, and through use of emerging epigenetic solutions, have improved all of my conditions without pharmaceutical intervention (the prednisone was killing me). It takes time, discipline, persistence and patience. No magic pill. Good luck to all in finding answers. Keep looking
Just one thought I have, it might be wise to have a 2 hour glucose tolerance test for idiopathic SFN. I think doctors might overlook this in younger/“healthy” folk, but it is simple enough to do.
“Oral glucose tolerance testing is much more sensitive than measuring the hemoglobin A1c and fasting glucose levels in detecting diabetes and prediabetes. These two conditions were detected by oral glucose tolerance testing in more than 50% of patients with otherwise idiopathic sensory-predominant peripheral neuropathy and normal hemoglobin A1c and fasting glucose levels.13,14 Therefore, every patient with small fiber neuropathy without a known history of diabetes or prediabetes should have an oral glucose tolerance test.”
from -
Mine was normal, but hey, glad I could rule that out!
Pain is a different creature. Some disabilities can be worked around but a job that requires standing, there are no accommodations for that. Even a sitting job is difficult with erythromelalgia, because I could not stand the pain of them being dependent. Also it’s an invisible disability, so people are less understanding.
While pain is an invisible disability, erythromelalgia is not. The pain and visual components of EM are inextricably linked. Pharmacological treatment that stops the visual component (erythema) also stops the pain.
We normally have shoes on when we are out in public, I meant. We are not in wheelchairs, or have any kind of handicap aids unless we are in a wheelchair, even my famous neurologist thought it was funny, seeing his patient with burning feet out in the waiting room with his feet in water. He laughed as he told the story. It’s feet, people think well everyone has foot pain, so it’s invisible to most people as a handicap.
I agree hayley3, one look so normal, except for the strange shoes or flip flops in winter while wearing a thick jacket! I didn’t realize just how agonizing and disabling live become when your feet hurts all the time.
Hi RD
I just wanted to reply that I as well have similar symptoms. My feet sometimes feel stiff and swollen though they visibly aren’t. I get cramps in legs as well…feels like I might have a “Charlie Horse” but usually stops before progressing that far. So you are not alone with these.