Hello from my first summer with EM

Hi, everyone. I was diagnosed with EM about a month ago by my chronic pain doctor. I’ve had burning pain in my face (especially when prone) since last December and thought it was the result of a jaw infection. Not so simple. I’ve also been feeling short of oxygen and often flu-like. Pain doc says it’s all due to EM. My feet have been burning at night for the past two years and that may or may not be EM, but is certainly small fibre neuropathy. My feet also burn very badly in the heat of summer and when walking. It seems I am fortunate in that I got the diagnosis rather quickly, but that’s where the fortune ends, I think. I have multiple other pain conditions (fibromyalgia, chronic daily headache, MVA injuries etc.) that I’ve always used heat to treat (I can’t tolerate any medications), so I’m really worried about how to manage this new pain and still use heat for other areas. My whole body is in pain. It’s complicated. I’m rather overwhelmed, frankly.

I’ve had a tough time in the summer with my feet and now that we are having a heat wave here and I realize how bad things can get with my face as well. I am in various degrees of a flare all the time both in my feet and face, but now the hot weather is making it very hard night and day.

Anyway, I am glad to find you, my rare EM’ers, and your knowledge and shared journeys. I’m reading and trying to figure out safe ways of cooling and ways of keeping on keeping on.

Sorry to hear you are having so much pain!
My feet are burning right now, I also get the red burning face too.
The feet and hands have been like this for years, i have tried quite a few things to find relief, but not much luck.
Fans, dry cooling, air conditioning with a fan directed to your feet and in your case, face too.
I live in San Diego, it was in the 90’s last week. I am also photo sensitive, so I have to avoid all sunlight, I have become a vampire, only coming out at night!
If it gets to bad, I take a trip in the car with the AC set on full, directed at my feet and face…
Hope you find some relief!

It's getting hotter in the UK this week, I am dreading it and I used to love the summer months! What has made me comment on this discussion is that just like you Jon I often used to take to the car so that I could have the AC blasting. My problem was that my husband was always freezing so it was hard to compromise.

My fans will certainly be coming out of hibernation this week!

MY facial flaring and headaches are helped by attending to my nose - my nasal pathways are narrow and they get inflamed and congested. My head gets hot, I flare and I get headaches. THIS is miserable. Most of the time I can get round this problem. I have found 2 products that really help - nasal strips and nasal dilators. These increase passage of air through my nose, thus cooling my head to some degree.

I also always allow my face to air-dry after washing - never use towels.

I found out many years ago that I am lactose-intolerant so I steer clear of diary products without going overboard about it. I used to get rosacea, but not since I stopped eating dairy produce. I am clear that the lactose contributed to the poor skin condition (flaring & pustules) I had at that time.

Well done for achieving an early diagnosis. I find coping with EM a never ending puzzle. If you like difficult/impossible puzzles and trying to live with them it need not be so bad. Celebrate little victories.

Hi! Thank you for sending me a FRIEND invite!!! yeah! I am so sorry to hear of all your pains! I totally understand...It is horrid feeling miserable. I wish I could walk! My first summer with EM and just diagnosed and cant find a dr that knows anything. I too have fibromyalgia, neck pain(accident), DDD, DJD, IC, TOS...there is more so I just can say that I know how you feel. It must be awful to have on your face too. I might recommend a product I use on my feet..it is 100% natural and 80% Aloe..I keep it in the refrigerator and it feels soooo GOOD and COOL on my feet. It is from Desert Harvest. You can google it. They have products for the skin (face?) as well I think. I cannot go outside in the heat as I wear a pain patch that comes off with any humidity! I am in the Midwest in U.S. really hot and humid. I hope you find some relief with all the replies and suggestions you have received.

Hi I am so sorry that you are going through this. I find this forum great though for feeling you are not alone and understood. I use a gel cool pillow for my feet at night which isn’t intensely cold but is enough to feel a cooling of my feet.
I hope this helps.