My neurologist who has tried in vain to help me suggested I see a dermatologist to see if he could come up with a solution. This appointment turned out to be so discouraging I’ve been depressed for two days. After telling me he had seen hundreds of such cases he told me that the pain I was feeling was impossible, it was maybe psycho somatic and that maybe I should consider hypnosis. He also told me to quit all medication, never walk bare feet and give up all physical exercise. Thanks for nothing!
Dominique, sorry to hear about your bad experience with the dermatologist.
I have found help with symptoms by reducing sodium in my diet, changing my physical exercise to less walking/standing and more upper body exercise, lidocaine patches for flares and acetaminophen for general all over body heat reduction.
For me, medications that increase water retention tend to cancel out their benefit by hurting other parts of my body which have EM, so things like ibuprofen, aspirin, gabapentin are mixed blessings.
One of the frustrating aspects of this disease is that different things seem to work for different people, so I would encourage you to continue to do research on your own, on the Internet, etc. The medical profession just doesn't have very many answers right now.
Xenon Pharmaceuticals is in mid-clinical stage trials on a topical treatment and there are others that are in very early stages of testing compounds. If you don't already know about it, www.erythromelalgia.org is a good place to obtain more information.
Thank you for your support and suggestions. It does help somewhat to communicate with someone who knows the pain and distress this disease can cause. I will try to limit my walking and standing although I find it very depressing as I am a VERY active person. The flare ups have been almost constant these past few weeks so I guess it has taken a toll on me, I’m normally a lot more positive and optimistic:)
Be well and thanks again for sharing
I'm really sorry that you had such a bad experience Dominique. I've been there, my pain specialist tells me the same thing. As I've had laser doppler scans that show I have EM, he can't get away with saying my pain is impossible, but does the whole psychosomatic stuff too. He tells me to try and get out more! If you want, I can try and send you the links for some of the scientific papers and articles I've found about EM. Then perhaps you could print it out, highlight the parts about the intense, burning pain and send them to this doctor. I've been under this pain specialist (I now think his speciality is in causing pain) for almost ten years, and it was only in Janurary I found out that he's been treating me for the wrong form of EM. I have primary and he was going on the cases of secondary EM he'd seen. He kept saying "I'm not an expert on EM but..." which infuriated me. Which form do you have, as the treatment can be different and secondary cases are sometimes milder than primary?
It would be worth pointing out that this guy cannot have seen "hundreds" of cases of EM as the incidence is only about 1 in 100,000 (2 in 100,000 for women and 0.6 in 100,000 for men).
Thank you starsmurf :)
My neurologist is great but this dermatologist was the worst! Unfortunately my neurologist has left on maternity leave and will not be back until January 2012, not that she was much help but at least she tried! I believe I have primary EM I liked your comment about your 'causing pain specialist' lol, you made me laugh thanks:)Would love for you to send me the links. Thanks for your support, I don't usually complain but it's gotten a bit too much to handle these days. Be well Take care of yourself and hope you have a painfree Sunday!