Hi everyone, my name is Karen and i have been having this problem with my feet for almost ten years along with other symptoms, its mostly after dark that my feet become inflamed, red, burning and elevated temp, i actually took the temp of my toes the other night and they registered at 101.0 degrees, it keeps me up almost all night and by morning they are pretty much normal except they become purple but with no pain or heat, then come night its back, my mother has what sounds to be the same condition but nowhere near as bad as mine.
Im really tired of doctors not taking me seriously because they dont look that bad during the day, i started taking pictures and showed my doctor, he told me to stop googling and prescribed me an anti anxiety medication. I did see a dermatologist years ago and she thought it may be lupus intil she ordered a test, and said the test was not positive, i also have had a rash that resembles plaque psoriasis but is on my torso, arms , legs and groin area but not on knees and elbows, my primary is very adamant that psoriasis affects the knees and elbows. Im at my witâs end. I dont know how to post pictures or i would, any information on who or where i could get some answers would be greatly appreciated.
Hey Karen,
My name is Merl, Iâm a member of the moderator support team here on the Benâs Friends network.
Now, firstly, Iâm not a Dr and by no means am I about to give medical advice. I too have temperature issues, nowhere near as bad as yours, but I can fully understand how debilitating these issues can be.
You seem to be having a few issues there and not solely temperature problems. It also seems that youâre also having Dr issues and I have to say when it comes to rare and complex health problems you most definitely are not alone. I have lost count of how often Iâve heard that line âIâm really tired of doctors not taking me seriouslyâŚâ I know because I had years of being written off, my concerns all minimised and I too have been given anti-anxiety/psych meds. It seems that when the medicos donât have the answers weâre looking for, they blame us âIt must be a psych problemâŚâ If this was all imaginary, I should be able to simply imagine it all away, but itâs all too damn real to be imaginary.
Here on the Benâs Friends network we have over 40 communities. One of which is for a condition called Living with Psoriatic Arthritis (PsA) Many of the members have spoken of the differing ways in which their condition has shown itself with differing symptoms, some seem similar to yours. They have also described seeing a specific specialist called a rheumatologist and my suggestion would be that you get a referral to see one. PCPâs are good for your normal medical needs, but anything more complex then ânormalâ, you need a more complex dr. You need a specialist.
Another option for you maybe to see a physician. Iâm in Australia and here we have GPâs (General practitioners) theyâre the same as your PCPâs. Then we have physicians, then we have specialists, then specialist surgeons. In most cases a GP can send you to a specialist, if they know the problem. A physicianâs role is more as an investigator for more complex needs, so rather than looking at the individual symptom for a cause/effect, the physician looks at the whole person. They can refer you on to specific specialist and order specific tests, then collate all of the medical opinions to come to an overall diagnosis for that individual person and not solely the individual symptom.
I hope this may provide you with at least a couple more options and please donât hesitate to ask questions, we are here to assist.
Hope it helps
Merl from the Modsupport Team
Hi Karen. I am not medically trained but I do have erythromelalgia, secondary to vasculitis/sero-negative rheumatoid arthritis. I dont know whether you are in the UK but if so the quickest way to check if it is EM is to be referred to Prof David Bennett at the John Radcliffe Hospital in Oxford. He will do a genetic test to ascertain whether you have primary EM. if it is not primary EM he will probably say whether it is EM or not but a secondary version triggered by many inflammatory condition, in which case the inflammatory condition will need to be addressed. He only treats primary EM.
Like you I had years before I got proper diagnoses
I hope this doesnt mislead you and that you find the support you need
very best wishes
I too have these similar symptoms with Erythromelalgia. My feet are always somewhat red but get brighter red when flaring and also turn purple. When they really get out of control they seem to get so hot that they blister and eventually that will cause peeling so my feet never look normal. Since I simply canât wear shoes comfortably I canât hide the fact that my feet are not normal so I get looks and people commenting that Iâll freeze my feet. I also have Lupus, breast cancer, bracheo radial pruritis, osteoarthritis and restless leg syndrome. Seems that some of these things occur together. I, too, went through the doctors and specialists to find out what was wrong with my feet. I was told it was athleteâs foot, chilblains, neuropathy when I knew it was not. But you canât argue with a doctor. Been there, done that with the anxiety pills, not even being told it was for anxiety. Those pills make RLS worse. Finally, I was given Hydroxychloriquine for the Lupus and it also controls the EM. Doesnât cure it, by any means, but I was unable to get Hydroxy when the pandemic hit and my EM got worse again so I know it helps.