I am having trouble getting any kind of diagnosis. I have been dismissed as somatising by 3 neurologists, a rheumatologist and two GP’s now. My pain levels are quite debilitating . How do people get diagnosis and treatment? All my tests have been clear so now I’m being treated as if I’m malingering. Confused and distressed.
That’s absolutely horrid they are treating you this way. I am so sorry to hear you are medically left untreated. I was diagnosed after showing pictures to my podiatrist and suggesting EM and he agreed. He then sent me on to a neurologist whom stated he could do nothing for me. I left that appointment and sat in my car and cried out to no one, to myself really. I then decided no matter what I would find someone who would help me. Have you shown pictures of your flares? I’m not sure what your options are there but do not give up, keep trying to find someone to help you!
Hi. Sorry you are still suffering so badly. Suggest you try to get a recommendation or advice from the authors of the Erythromelalgia dermatology website in Australia. The two authors are Dr.Cathy Zhao (University of Sydney Dermatology), and/or Dr.Tanumay Raychaudhury 0288333000 or info@skinhospital.edu.au
Hopefully you will be able to get a good local recommendation of a specialist or gp who understands Erythromelalgia.
All the best.
Seeing is believing. If your doctors are not convinced by pictures, you must elicit symptoms while directly in front of them. Use some sort of heat source to provoke a flare while in the office.
Have you tried the Erythromelalgia Association’s physician directory? These doctors have at least seen the condition before.
Keep going to doctors. With pictures. And don’t stop. I did and finally got diagnosed by a rheumatologist and am being treated properly. I wasn’t taken seriously either. It’s so rare and docs don’t like to feel like they don’t know things. Show them erythromylalgia websites. I’m sorry you are going through this. It’s a shame it has to be so hard sometimes.
Hello , most Md.'s have never seen EM . Best to take a picture of your condition or better , to make an appointment when you are showing the condition. There ARE treatments that really help !!
I’m so sorry you are being treated so poorly. It sounds as though you are dealing with a bunch of morons. Clearly, you have EM. The unfortunate thing about this disease is how few medical professionals know anything about it. My buddy who is a rheumatologist summed it up quite well. For everyone of us with burning hot feet, there are at least 10,000 people with frozen extremities. They get all the attention and research funding. So far, we are stuck trying to find ways to manage the debilitating pain.
Are you sleeping? It took me 3 years to solve this problem. The lack of sleep almost killed me. If you need some pointers, just let me know.
In the mean time, your condition is real and you are justified in your frustration. You definitely need to find a GP who has some semblance of decency and compassion.
Lastly, give yourself permission to have bad days. Being kind to yourself (and learning to meditate) has helped me mentally.
Stay strong 