How did you become diagnosed...

How did you become diagnosed?

Dermatologist. When em(then did not know what it was) worsened at age 58 I kept saying to them no one is listening Look at my feet! Look at my hands! Already knew I had Raynauds. They listened and sent me to a dermatologist.

That's terrific, that they listened.

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A pain doctor. He was about my 5th doctor. Since then only 2 doctors that I've mentioned it to had heard of it let alone studied it. My new primary doc has never heard of it so you can imagine how much help she is. I had to twist her arm to get a very minimal dose (1/2 of a.25) of Xanax per night to help with sleep. If I ever need anything more for pain I'm not sure where to go to get it. My derm at the time knew what it was also but this was after diagnosis.

I've never considered Xanax for sleep. Wonder if that would help me.

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I was diagnosed by a rheumatologist. I had written down all the symptoms i had been having. I was referred to her for possibly having RA. She found I had a horribly low vitamin d level which is very painful, fibromyalgia and EM.

I do have a chronically low vitamin d level, so do our kids. Raising it has helped tremendously.

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Rheumatologist but he didn't really know anything about it. I found a primary care that's willing to play.

The rheum? He knew when he saw it. I already knew but I didn't say anything wanting to know what he said.

Mine weren't at the time. It was the start of it. At that point it was hands and toes but they weren't red for the appt. now they are always off color but he diagnosed by my explanation of what happened to me

He asked if we put them in warm water in the sink would they flare and I said yes but I'd rather not make myself flare

My story is pretty similar to Laura's. Rheumatologist, he was all out of ideas but a colleague suggested EM. He filled the sink with warm water and asked me to put my hands in. I did. I flared. He diagnosed me. I was eight.

afton780, ouch

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I figured it out by looking online. I showed my pics of ted toes and articles to my derm. " no way!! That is very rare"!! He then tried prednisone which didn't help. He started to doubt himself and tried cytotec and it helped right away!! Now, when I show him my feet pics his response is " textbook EM"!!

jeanne3 yes! At least it did when I first started. Not sure now. I stopped it to go to Mayo and I don't think I was worse. Also not sure if better once re-started. Afraid to stop it!!

I get burning sensations in front of my thighs... wear leggings to help the pain.

No longer wearing denim jeans or pants for about five years helped me. I could wear yoga pants. I could wear dresses. Just last year I found a brand of jeans I can wear a couple days a week so I bought three pairs!

ang8 do you think thighs are EM or a neuropathy? Have you been tested for small fiber neuropathy?

ang8 may I ask if your kids show symptoms?

amy28, yes I think four of them do. The other has CRPS ☹

I talked with our neurologist yesterday. He believes, from our messages, that erythromelalgia fits for our kids and me, excepting our older daughter who has CRPS (similar but different, and worse).

I don't know if thighs can be included in erythromelalgia or not. I've been given Meralgia Paresthetica as a dx for that, about four to five years ago. It's the same symptoms, just in my thighs.

ang8 that occurs on the sides of thighs. My pain doctor tried injecting me with lidocaine to see if that was it. Nope. I'm wondering if we have small fiber neuropathy in thighs or if it's an additional area of pain due to sodium channel mutation? I'm praying I'll be able to try a sodium channel blocker soon.

amy28, my neuro says SFN, yes.

ang8 I keep thinking that is what I must have too except for all testing at Mayo said no.

amy28, they aren't all-knowing. I had a generic dx of Meralgia Paresthetica for my thighs.

ang8 yes, I agree with you completely. My sweat test showed my toes don't sweat but Mayo said it's a normal sweat variation. I don't know why they didn't try to connect the dots! I believe it may be SFN too... going to Hopkins for another opinion.

We are pretty sure we have a sodium mutation and the top of my thighs burn and turn red. In addition to my feet, hands, and cheeks

I think it's just part of the EM

nicole43375 wonder if a sodium channel blocker might help feet and thighs?? Heading to Hopkins next Monday.

nicole43375 seems to be a rare area as others don't get it much. People with SFN seem to get it. Mine started in thighs about a few weeks after feet. I got a livedo pattern in legs and then burning started.

Amy, The sodium blocker helped my thighs too, but mostly my hands and feet.

Good luck at Hopkins! Let us know how it goes.

Amy, I didn't know what a livedo pattern was...I just looked it up. It looks a lot like what my hands and legs do at the beginning of a flare

Thank you! I am very blessed. I am going to message you some more about what's going on with us?

nicole43375 yes, good idea. Sorry I posted here!!

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amy28 what does cytotec do and whats your dosage? Did it stop the redness and flares and pain?

Yes, helped a lot to stop flares. 200 mcg 3/day

See my response to jeanne3

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By a neurologist... The third I saw! Saw some specialists who had no clue...

Isn't that the way of it!

I have looked for years to find what I was dealing with and never found any good answers.

My original neurologist NP diagnosed me, genetically, with Meralgia Paresthetica. That was only in relation to my thighs.

My kids began having issues over the past couple years or so. One had some frightening tingling on her foot for no reason a couple weeks ago.

Somehow, now that I was researching for our children, Erythromelalgia came up. It answers all our questions!

I contacted our newer neurologist (he dx our Dysautonomia) a few times yesterday, via message.

He has replied that he wants to monitor the kids over time but doesn't need to see them right now and won't do an EMG for them. He knows our history of EDS/POTS/MCAD and that one of our kids has CRPS.

He says Erythromelalgia is small fiber neuropathy and makes sense as a dx for us. He says we can continue with Graston Therapy and Low Level Laser Therapy.

The neurologist diagnosed me with dysautonomia, but I feel it's rather SFN. I told me that I "went too far in my research"... Whatever... Ugh. I would like to get a second opinion, but it's easier said than done...

*He told me...

amelie2, SFN?

Small fiber neuropathy!

ang8 Do Graston Therapy and Low Level Laser Therapy relieve the symptoms of erythromelalgia?

lois5700, they do, if that's what is also going on in my thighs and calves.

My neuro gave me the go-ahead to continue them in light of my realization and discussion with him yesterday of EM.

ang8 not all EM is caused by neuropathy. But, given that you all have autonomic neuropathy it sounds likely for you. I bet you have a genetic mutation that causes small fiber neuropathy. What is Grayson therapy?

ang8 can you tell me about your treatment for thighs??

amy28, Graston: Some disagree with it. Some agree.

The point is that I've tried it and it works very well for me. It feels like severe massage, using tools. I bruise with some practitioners; but not with my chiropractor; but I get better relief from the other practitioners who bruise me. I said it /feels/ severe but I've been shown how hard they are doing it, on other parts of my body, and it's just that the parts of the body it's done on are the parts that hurt, so it makes sense it feels worse than it really is.

Graston, LLLT, and raising my Vitamin D have been very helpful for me.

Heat, when it's on both legs, feels good. I like hot stone massages. My legs are calmer afterwards.

lois5700, see above. I don't know if it's EM in my legs. It's at least a similar situation.

ang8 how often do you get Gaston? How about the LLLT? Do you know the laser type? Type 3?

I don't know the laser type. I had it first in England and it was miraculous!

Then our daughter's pt bought one when I told them about it. She gets it.

I just started with that therapy location and had an evaluation and one treatment of LLLT but can't be seen for another month due to scheduling.

Graston, depends.

Used to twice a week. Now weekly but will taper off at some point.

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My cardiologist as her had one other patient with vascular.

That worked to your benefit

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13 years ago, self diagnosed after reading an aritcle in a magazine about a teen suffering from EM, took it to my doctor and he agreed and refered me to hospital

How great. What did you gain from the referral, lorna23?

not much the only good thing was he remebered em because he'd covered it when he was a med student, he was in his 50's and had never actually seen a case in all his time as a doc. it wasnt until about 6-7 years ago i moved to a different city and because my new family doc had never heard if it he posted a post in a forum for docs and someone from the royal free in london said send her here we know all about it. was so lucky, i have had some idiots docs as well, i had one tell me aqua therapy was good for pain and the hotter the water the better

lorna23, where do you live?

sheffield in the UK

lorna23, we lived in Lyne Chertsey Surrey from August 2007 to December 2009. We loved it!

we moved from nottingham to sheffield about 7 years ago, best choice we ever made. the professor i get treatment from now is based at the royal free in london, a bit of a journey but im prepared to do it to see somewone who knoews whats hes doing. where are you living now?

We had two great physicians in Virginia Water. Of course, we used our expat American insurance though, and got more attention, I think, because of it.

None of us knew we were dealing with chronic issues then. Well...I did, but I thought it was all because of a varicose vein. It wasn't. It was EDS and that's what caused the varicosity, the fire, the pain.

i was being treated for allergies for abour 4 years before my diagnoses tried soooo many things and nothing helped. then moved to sheffield got referred to the royal and been there past 7 years, was looking to be under control till last year i know im getting worse, due to go to london next month so will see what they say

lorna23, do you think it is mcad?

not sure what that is. but ive been diagnose with primary EM and raynauds. nothing else fits

lorna23, you need to look up Mast Cell Activation Disorder. It is a co-morbidity with many of our illnesses.

i'll look it up tomorrow...not with it tonight to actually make head nor tail of anything. will mention to prof denton and see what he thinks when i see him next month

lorna23, I've been at it since 2013 with MCAD and MTHFR and still struggle to really own the knowledge of them. If you want group links, let me know.

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Dermatologist and neurologist, they both agreed it was EM!

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I had been gravely ill for almost 2 years and was finally getting well when I started to be grossly symptomatic. Therefore my diagnosis was exclusionary after seeing seven different specialist, and over two dozen tests Rheumatology made the definitive diagnosis. My care is in a system that includes the university healthcare teaching facility, all these visits and tests were within 3 1/2 months.

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My husband found it online and yhen got confirmation by a vascular dr

He's good at research then. Keep him!

When my husband first found it and told me about it and how rare it was my instant reaction was denial. "There is no way I am 1 in 100,000!"......but here we all are!

kayla5094, my denial was in actually finding something! I've looked and looked, unsuccessfully, for myself.

I guess needing to find info for the sake of our kids was all that had to happen.

I've diagnosed most of the things we suffer from. Only one doctor dx one very rare thing for us, so far. I took my research to the proper specialists and was deemed correct.

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Mayo Clinic. I had been gravely ill also steven98242 for a long period of time and then became also grossly symptomatic. Interesting.

Grossly symptomatic? Pain all the time?

Pain all over the place - extreme pain - pain so bad I could barely walk and still this is true...fatigue so bad I could not walk from one room to another without taking breaks....fatigue so bad I had to literally scoot my body across the floor a little at a time - it was ridiculous....now some of that is better but dealing with lots of other stuff...like fainting sometimes....still have extreme fatigue at times, still have extreme pain all the time, brain fog etc...found out that in 2015 I had Rocky Mountain Spotted Fever though in November so I don't know how much was from that, how much was from Fibromyalgia, how much was from Small Fiber Neuropathy, how much was from Erythromelalgia, and how much was from possible Complex Regional Pain Syndrome as an additional diagnosis. So yeah - extreme burning stabbing pain, redness, swelling, etcetera - compounded by osteoarthritis too. Grossly symptomatic....it was a good description that he used I thought. Lots of other symptoms - bladder trouble - frequency, urgency, other issues...

john3 Have you been given tilt test for POTs, sometimes these post viral syndromes or what ever we are multifaceted. So sorry, How about adrenal and endocrine dysfunction.

john3 It sounds like Lyme disease and other tick-borne illnesses (Rocky Mountain Spotted Fever!) Lyme disease can affect every system of the body! That's what my son is dealing with.

john3, our older daughter has CRPS.

The doc who dx that was the only helpful one we had for discovering dx. I had to discover the other dx myself, leave our hmo, and then get us scheduled with the proper specialists.

Christy is correct that you've likely developed Dysautonomia as a result of probably CRPS or RMSFever.

If you're in the Midwest, I know a great CRPS FB group.

Check out Dysautonomia International, also.

A Tilt Table Test by an electrophysiologist or neurologist will dx it and meds can control it.

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Long 18 month tour trying to find out why my body was overhearing. Collasping with heat strokes. Have RA and attributed burning feet and hands to the RA. Diagnosed at a University Case Medical Autonomic Lab with autonomic dysnomia and Erythromelalgia

You could also have Dysautonomia as that includes the regulation of body temperature.

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