Quick question

[Tiggywoos]

Has anyone been treated for Erythromelalgia please and if so who did you see ?

Thank you 🙏

[honeybug]

Hi Tiggywoos 🌿🌸🦋

I have. I saw the #1 Rheumatologist at the University of Michigan. It was confirmed via a double DNA testing.

I have the rarest form of inherited erythromelalgia. The worst flares involves billions of pins/needles stabbing my head which causes intense heat and impairs my breathing.

I’m taking Paxil 20mg at night.

I also have to avoid salt as it is a trigger too.

For burning feet I was given lidocaine ointment. It was too greasy and didn’t absorb well so I switched to Aspercreme with lidocaine which works great for me.

I hope this is helpful…it took me 64 years to get diagnosed.

Best wishes Tiggy.

EJ 🤗♥️🥰🙏🕊🌿🌸🦋🤝❤️‍🩹

[Tiggywoos in reply to honeybug]

Thank you so much EJ you’re so kind 😊😘🙏xx sending you healing hugs

[honeybug in reply to Tiggywoos]

You’re most welcome sweetie. 🤝❤️‍🩹🥰🙏🕊

[redmaggie]

Hi Tiggywoos, I have erythromelalgia, I live in Uk and was diagnosed formally 3 years ago at the age of 62. I had self diagnosed before that as I had 5 years of symptoms and had to do my own research (GPs had no knowledge of EM and misdiagnosed). The EM affects my hands the most, then my feet, sometimes my faceAs for treatments, I currently use lidocaine patches in the evening/night time. You can only use for 12 hours on/12 hours off, plus they can be a tad inconvenient in the daytime. I also take a prescription cocodamol in the evenings as the EM makes by joints painful too. Its not generally recommended but it helps me. I can reduce pain somewhat, not remove it. I have tried gabapentin, but it just knocked me out and affected my thinking. Attitude of mind and acceptance are important for me - as anxiety will increase pain.

Understanding your triggers, pacing activity and cooling down the affected parts is probably the most effective way to tackle flares. However, we have no control over some triggers, eg. the time of day, hot and humid weather.

You can find a load of info on the TEA erythromelalgia association website or join the erythromelalgia warriors private facebook group. lots of helpful advice there.

[Tiggywoos in reply to redmaggie]

thank you so much for taking the time to reply. Is yours primary or secondary if you don't mind me asking?

The TEA website is great and I printed off lots of information for my rheumatology appointment and she just looked at me blankly and said try tiger balm . I also tried gabapentin and pregabalin but they made me feel really low in mood and also affected my thinking.

I have made an appointment with Dr Cregg who is based in London and has an interest in Erythromeylalgia .

Thanks again

[redmaggie in reply to Tiggywoos]

Hi there, Tiger balm is just crazy!! it's good to hear that you have an appointment lined up with an expert. Are you going privately? I went to the Royal Free, only had to wait a couple of months for the first visit in 2019.....but it's taken 2 and a half years to have the follow-up (just last month). I have almost despaired with the cancellations and wait, and saw a private Dr in between. I'm not sure what my EM is categorised as, but it arose in middle age, ontop of an acute illness. I seem to have other issues as well so possibly it is secondary. Let me know how you get on with Dr Cregg- I've heard about him, it will be interesting to hear how helpful he is. Good luck!