Trying to determine if EM

Hi everyone. I’m trying to determine if my condition is EM or something else. I have an appointment with a Neurologist in a few weeks and would like to come prepared.

Condition: Paresthesia. Warmth, tingling, increased sensitivity & sometimes pain sensations, in both hands and feet. It is now mostly in the left hand–pain sensations along the rim of the palm & thumb pad, and increased sensitivity – and occasionally warm feet. The right hand usually feels “normal” but can get slight paresthesia. When the condition started around 1.5 years ago, both hands started pulsing / throbbing with heat; this occurred at the beginning of a viral infection (maybe Hep A) that lasted for several weeks. I eventually recovered, but the paresthesia remained.

Hands: they are classified as “bier’s spots.” - red on the fingers and palms (not the tops) with tiny white spots freckled all about both the bottom and the top. I’ve attached a photo from wikipedia, which is very similar to mine. My feet are generally pale and sometimes get the bier’s spots, depending on how my legs are positioned. The heat sensations in the foot sometimes go away if I adjust my back. My hands do not flare, they always look this way, even when pain/warmth is not present. They turn paler if I lift the hand up, which is a normal phenomenon of bier’s spots. None of the examples on the internet of EM look like this, though EM seems kinda broad. Looking at photos, I’ve had these spots & redness for at least 5-6, maybe 10 years, though it has gotten more intense. I first really noticed it when I began experiencing tendinitis pain in my hands and forearms around 7 months before the paresthesia (the tendinitis might be the primary cause of this pain, I’m not sure, as I have a lot of pain in several points of my forearm, upper arm and shoulder.)

Room temperature does not seem to trigger or affect these sensations. They do not generally get worse from exercise, from my experience. Most sources of heat do not aggregate or bother the condition–I can run by hands under hot water without feeling uncomfortable-- except computer heat initially (but that has faded). It is soothing to feel cold water or something cold, but the sensations are immediately present again when the stimulus is removed. If I smoke tobacco, the sensations vanish for 30min-1 hour.

Generally, I feel heat in my feet when I go to bed, but do not feel it at all when I wake up at night, and do not feel it for the first hour or so out of bed. The sensations then begin to manifest, and used to ‘flare’ 2-4 times a day (more intense pain/sensations), with low sensations in between. I have started taking some supplements - Vitamin B complex, ALA, and Acetyl-L Carnite - which seems to have made the sensations less intense.

According to blood tests, I am perfectly healthy.

Does this sound like EM or EM related? My skin temp sometimes feels physically warmer but not always.

Thanks, IV

That you can place your hands under hot water and not have symptoms increase suggests you do not have EM. Individuals with EM have substantial problems with heat.

If I lift my feet or hands up, they turn pale/normal again.
My redness was worse when wearing shoes esp with socks, or in a dependent position so I took a picture of them congested with blood. Also warm water on my hands/feet make them turn red, not necessarily burn.
My feet burn worse at night after wearing shoes or standing/walking too much.
If I touch my feet with my hands, they feel no different but if I place my foot against my thigh, I can feel the heat in my feet. I have had it so long, thankfully my brain can focus on other things and I can ignore the pain except when I lay down at night, if I’m not wearing shoes.
Does your Neurologist know anything about EM?

It doesn’t sound like EM, I have to have a fan and ac blowing on me constantly. I got EM in my hands and arms first, and I am always burning but I have intense flares throughout the day.
It kind of sounds like neuropathy, you should see a physitrist to do a nerve study on you. Also Raynaud’s syndrome, my daughter’s best friend has Raynaud’s and her hands look like that picture but it doesn’t cause a lot of pain. I was diagnosed with Raynaud’s at first because I go from purple to bright red because I have to keep cold air blowing on my hands and arms so I don’t hurt. My friend has peripheral neuropathy and her symptoms sound similar to what you are describing. She has problems with heat but not like someone who has EM.
Good luck to you, I hope you figure out what is going on. I was relieved when I finally got my dx of erythroymelaglia, even though it’s a awful thing to have it was better than the frustration of not knowing.

Thanks for the replies, everyone. I suspect Peripheral Neuropathy but the vasoconstriction requires a look at em. I barely get anything beyond mild heat in my hands, mostly just irritation at this point. We’ll see what the neurologist says, I will bring in info from this site with me. -IV

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I got a email with a notification either saying I have a message or someone replied to me. I can see the first few sentences, but when I click on it I am brought to the topic but I don’t see where the person was saying what I already saw part of in the notification.
This is the second time this has happened, so I should probably figure it out.
IVaaa I saw that you asked me if I qualify for disability. So I applied before I had a diagnosis but I have a bunch of other stuff wrong as well, and the state is paying me disability and they helped me apply for SSDI. I was denied on the application and appeal, so now I have a lawyer and my hearing is in November. Now that I have an actual diagnosis I think I will be approved, my lawyer feels I will also because I have doctor’s who strongly back me up. You might be in the beginning stages of EM, it’s different for everyone. My started in my hands which is rare and then started moving up my arms and now my ears are in a lot of pain as well. My cheeks and feet and legs are starting to flare as well. My dermatologist thought there was no way I had EM until I sat in her office for 15 minutes and I started to get warm and she watched and felt my burning arms. She did a biopsy to rule out some other things. Some people wake up one day and have major flares of EM, while others start noticing little areas of heat that gets worse.

I am trying to figure this site out, I don’t see your message in my
messages on the site but in my actual email. I must have a setting on. I
answered your question about disability on the topic. So I have had dvts,
PES, kidney stones, carpal tunnel, anxiety with panic attacks. Well in
December 2015 I started going downhill and quit working, I feel really
dizzy all the time and nauseated. Then I started having burning in my hands
and night really bad and it was hard to sleep but I didn’t say anything to
my doctor about it until April of 2016 because I just thought it was some
weird thing that’d go away. So dshs labled me as disabled just for my
anxiety issues, and I had a SSDI advocate that was helping me apply for
disability. I was denied on intial and appeal. I was just officially
diagnosed two weeks ago, but my PCP was pretty sure I had it 2 months ago.
My lawyer wouldn’t take my case until my doctor filled out a questionnaire
and they took my case and said that’s the most they have seen a doctor back
up their patient and my dermatologist who did the official diagnosis is
also backing me up along with my physitrist. So now that I have a diagnosis
for my main issue I think I will be approved at the hearing. I guess I got
one of the nicest judges in this area and he approves 60% of cases. I am
only 34 and I don’t have a huge work history and they works against me. I
was a stay at home mom since 2006, and then I went to back to work in 2014
and a year later I had PE’s again, and then the dizziness started a couple
months later. If you have any questions you can message me anytime, I hope
your neurologist will find out what is going on with you. Are you on any
meds for your pain? Like gabapentin or Lyrica?

I think the most useful things I have done are to take pictures of my hands and feet both when the condition is calm, and when I have a flare. I also have several articles on the disorder. I put these together in packets that I take to doctors, as most of them do not know what EM is. I have found that dermatologists know most about this as they are often the first people that patient’s see when the skin changes. I also think that since this is a pain disorder and a neurovascular disorder, that the best people to investigate are not neurologists, but rather cardiac docs (because it has to do with vessels) and pain specialists. Stanford has an excellent pain clinic where the docs know of this disorder.
Best to you in this complicated scenario.

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Is it on this site that has the list of doctors that deal with EM? My dermatologist has had her practice since 1989 and I am the first person she has actually seen with EM. But she did know what it was and was just baffled that it was on my hands and arms. She has been doing a lot of research and has been great at trying to find what will work for me. It seems like the main specialists that I see treat EM are dermatologist, rheumatologist, neurologist, and pain clinics. I have a cardiologist and I went to see her about some chest discomfort and she saw me during a flare and suggested it was just anxiety. I think it doesn’t matter as much about what the doctor specializes in but that they are open to researching and helping someone. My old cardiologist probably would have been more interested into figuring out what was wrong with me.
I think my em is secondary though and a lot of autoimmune conditions run in my family so I am hoping to see a rheumatologist soon, and I go in for more blood work this week.
I think it’s key when you are first trying to find answers that you have a PCP that listens to you and is actually doing something to help find answers like referring out to specialists and doing testing. I really hope more doctors will know more about EM in the near future and so many people won’t have to go through the frustration of being in pain and not knowing what is wrong.