Struggling really badly

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I am a 30 year old guy with what I believe is erythromelagia. All the symptoms match to a t I have this is my hands feet and genitals. Its getting worse week by week and the doctors just dont understand.

I have gone from a normal happy life with my partner to not being able to work concentrate and walk around in pain not just in my feet or hands but in my genital reigion too. Sex is just painful… And i just cant believe this rtpe of thing actually exists I have a rhemi appointment in 2 months but I feel it is getting worse and my GP has done an anti body test and it all come back clear…so not secondary?

I really believe there is some kind of autoimmune issue going on as I have had tongue ulcers since I was young And had inflamatory issues my whole life but the antibody test came back normal. This exact problem but alot more mild happend 8 years ago but dissapeared in time…I am at a loss and feeling so emotionally lost feeling like no one understands whats happening. I just dont want to live like this or have to deal with symptoms which will get worse my life was at a peak and I feel like it has just destroyed me.

Please help me I am so sorry I just have no 1 who understands.

Thaank you xx

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If you are contemplating suicide or feel you may harm yourself, you need to dial your local emergency services number. (In the UK, I believe that is 999.)

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For the bigger picture, you’re going to need to get a diagnosis before you can get treatment. In the UK, that will mean marshaling the resources of a bureaucratic system to meet your needs. I would look into how the NHS handles cases where the specialist is unable to provide care. It is very likely the rheumatologist you see in 2 months will be unfamiliar with erythromelalgia. It is a rare condition that most doctors won’t see during their careers. You don’t want to have to wait another 2-3 months to see a second specialist should the rheumatologist be unable to diagnosis you. Are there advocates you can contact who will work on your behalf within the NHS? You may need a third party to help you navigate the system.

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Hi Dave,

I’m so sorry to read your post. I think many of us have felt (if not currently feeling…) similarly. I was 30 at my onset as well (32 now). The first year was the scariest for me I think because of the shock. I didn’t know wtf was going on, and just kept thinking it was a nightmare I would wake up from.

One concrete thing that helped me was, reading all the literature on EM and SFN I could, and just trying to understand it all. Because for a long time, it seemed like I couldn’t rely on doctors to give me direction. It is so hard feeling so out of control. For me at least, reading obsessively about EM, SFN, and just generally how the blood vessels / nerves worked, I felt like I was able to have some control back, and felt less panicky … even if it was all in my head … if that makes sense. Also, I get the feeling that, the better I was able to converse with doctors, the more treatments became available to me … unfortunate that that is the way things seem to work. For example, I had brought up the possibility of lidocaine infusions earlier this year after reading about how helpful they were for EM + some people on here. My derm agreed and referred me to a pain doc who sent the order through … While I’m grateful this is an option for me, it is a very queasy feeling, to wonder … what if I never brought it up?

One thing I’ve noticed – It’s very easy for me to feel defeated/hopeless about my situation. Like … very easy. Objectively, if I try to view my situation from someone on the outside though, I don’t know if the situation is as defeated/hopeless as I feel, if that makes sense. My best doc I remember had told me a long time ago – that he wasn’t sure that my life would be the same, and maybe I would never find out why exactly this was happening to me, HOWEVER because there are so many meds out there to try (antiepileptics, antidepressants, topical analgesics, vasoactive drugs, … ) he was very hopeful I would at least experience partial relief. I for sure did not feel his hope at all at the time, and often still do not … but i do realize it’s hard to look at our own situations in an objective lens. It’s a tough balance, that I don’t have an answer to – to allow oneself to acknowledge feelings + mourn for what this has taken away from them, while remembering that someone else could look at our situation and feel hope. If that makes sense at all!

I don’t know about inflammation + autoimmune stuff at all (doesn’t seem to be an issue for myself) but my sense is that a rheum is the doc to see for exploring that. Sorry your appt is so far down the line. In the meantime I would try to see if your PCP would be ok prescribing any “EM drugs” and monitoring so time isn’t just being wasted waiting for a doc that may or may not be helpful? I also wouldn’t trust just one specialty either – docs in neurology, dermatology, pain, vascular specialties, might each bring something to the table.

In the meantime keep posting here if it helps you. Take care Dave

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Thank you Cat and Carter it does give me hope knowing others are going through the same problem and I so hope you guys are doing ok.

Anyhelp you guys can offer me the better thank you so much maybe it would be a good idea to ask my doctor more about it. However, my doctors are terrible I live in a small town and only deal with your standard issues… Nothing this vast I think they are out of their depths.

I do not want to harm myself…I just cant imagine my life being ‘normal’ again and its just very hard to accept…just giving me alot of anxiety. It is such a shift in what my life was and I can just feel it taking over.

My main issue is this genital problem it is so uncomfortable…and oh I dont know iys just a horrid syndrome we all have. I just need time to adjust and accept whats happening. It is just very hard and I think it is very hard for my partner as I am the one usually taking care of her.

This all seemed to of happened after having a rabies vaccine 5 of them and suffering very harsh anxiety from the event I was bitten while in asia.

I wondered of it triggard something in me like an auto immune condition.

Cat and Carter your my inspirations right now please help me and stay in contact. Are you both from the US?

Thank you guys xx

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Yes I am from the US.

You know, my neurologist asked me (when he was doing neurodiagnostic testing for small fiber neuropathy) if I had a virus or was sick at my onset. (I wasn’t.) He said there is some recent evidence to think SFN (which tends to go hand in hand with EM) might have autoimmune or dysimmune in origin. If this is the case for someone, then an aggressive immunotherapy approach might be beneficial (antimalarials, high dose steroids, IVIG, rituximab, …) I am just passing this along in case it triggers a thought or something to look into.

I really hope you get relief soon. Keep us posted + hang in there

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Thank you Cat. Loads of hugs for you so glad you are around tonight very emotional day for me you have given me some hope x

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Is it possible to go elsewhere? Great Britain isn’t a huge island. It’s geographically about the size of the US state of Kansas. It appears you’re not far from London? You may have to travel to more knowledgeable physicians.

Yes, I live in the United States.

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" I just dont want to live like this or have to deal with symptoms "

Six months ago I said the same thing to myself. I wasn’t suicidal either but I could imagine over the years, with no improvement, I could be. I’ve had EM for 30+ years but it had been so mild, I didn’t know it was a thing. Three years ago it changed my life. Another 2 years to get diagnosed and another year of trial & error on drugs and I’m finally getting some relief and creating a new normal for myself. You have to let your old life go, it’s gone.

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Dave hasn’t tried any treatments yet or even been diagnosed. I think it’s far too early to make such sweeping statements.

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Thank you Carter,

That statement did put a downer on the whole thing. This seems like a second flare for me and the more you read into it the more things it could be… Even MS could be a possibility. All this waiting around is not good I down want ro research it anymore. What is weird is that the first flare I beleive completly went away. Which is so strange.

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Because of your presentation I have doubt it’s EM. This forum has existed since 2011 and there have been 15,438 posts since its inception. The word “genital” only appears 15 times. Your recent mentions of the word account for 27% of that total. Similarly, penis appears 6 times, scrotum 3 times (2 of which are your posts), and vagina 5 times (all from 1 user). Genital erythromelalgia, if it exists, is exceptionally rare.

Remember that EM is already a rare disease, appearing only in 1 out of 100,000 people. To then say you have genital erythromelalgia, the medical equivalent of a four leaf clover at the end of a rainbow, you would fast approach lottery type odds. You would need to be that 1 in millions.

The long odds call for rigorous investigation of every other possibility.

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Thanks Carter your really reassuring. I am just afraid that its irriversable. I guess lots of other conditions can cause red hands and feet although I have noticed my fingertips are pruney and dry flakey…seems nerve related just so damn confused. I might have to look into private healthcare. Thank you Carter

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You can’t hit a home run until you’ve swung the bat. Don’t get too despondent before a single attempt has even been made to fix the problem. You’ve not tried any treatments.

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Thanks mate,

I really need that positivity right now. Gonna try go back to work on wednesday try and have something else to focus on.

Your awesome.

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The mind is a powerful thing. When I initially presented with unusual symptoms, I was certain I had rheumatoid arthritis. My mom has it and I was only a few years removed from the age it afflicted her. Symptoms were focused at my knees, but then I began having pain in my hip, shoulder, and neck. For a time I felt a crushing pain in my hands. My symptoms were spreading and full on rheumatoid arthritis seemed only a matter of time.

Largely on the basis of my reported symptoms, family history, and an inconclusive MRI, my rheumatologist diagnosed me with “a seronegative inflammatory arthritis, possibly diagnostic of early rheumatoid arthritis.” Then a funny thing happened…

No sooner had he diagnosed me, I started believing I did not have rheumatoid arthritis. My focus shifted to a rare condition called erythromelalgia after searching one night online for why my knees would turn bright red, hot, and burn after showering. Soon I became convinced I had erythromelalgia instead.

You might be thinking, what about the pain in my hip, hands, shoulder, and neck? Well, it cleared up. It simply went away once I no longer thought my joints were facing imminent destruction. Was the pain all in my mind? Did anxiety trigger it? Perhaps the pain was a side effect of the prednisone my doctor had prescribed? I don’t know. To this day it remains a mystery to me.

The moral of the story is to remain relaxed and open to the possibility good things can happen. Today my erythromelalgia is well controlled with medication.

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Thanks for sharing that Carter,

I have had a masssive amount of stress which I believe has caused or contributed to this. And I am also wondering how powwrful stress hormones are and what they can do to the body. I also wonder if there is such thing as over active nerves? But I also strongly believe the vaccine I had may of contributed to my symptoms too. I think it is something I will never find out but it has only been 6 months since these symptoms arrived and stress has just got worse so maybe in time it will heal and just go.

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Hi Dave,
We moved in December 2016 and the following day my EM started so I do think it is stress related.
The first meds I was given were 3 x 300mg Aspirin and 300mg Gabapentin ( this was increased as body got used to it) They made a difference and then I went to a pain management Dr who has been brilliant.
If you can take aspirin go get some and see if it eases it. Also send snippits (get his office e-mail) to the new Dr you are going to see from this site to give him a heads up on what others are being treated. I found its a case of educating the Drs and this is where the people on here are so brilliant.

Good luck and keep us informed as how you are going.

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Thanks Iris,

This is all abit overwhelming for me atm, my symptoms match exactly however it seems acute and pretty bad…both hands both feet and possibly genitals. Its just very horrid at the moment. My life is on hold for now and still have to wait for my appointment. I jist cant believe I may not even be able to run witjout burning feet. Its just rediculus.

Sorry to put a downer on this Iris.

Hope your well, and one good thing is that our NHS has a website on erythromelalgia so maybe they will be aware of it?

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This totally summarize my experience. I got exactly the same diagnose, and started with pain on several joints and knees turning bright red, warm and painful.

It was a big relief to me knowing there are people feeling as frustrated as me, even desperate, and little by little finding help from more capable or knowledgeable doctors.

I just want to send you a big hug, Dave. It’s difficult to ask you to be patient, because I was there too and know the feeling, but little by little you will find ways to cope with your symptoms and, eventually, find relief.