I have finally reached that point where my symptoms are beginning to effect my quality of life. I’m 21 years old, undiagnosed but I’m seeing my dr about it very soon… I’m just afraid that he’ll tell me there’s nothing to make it better. All day I have to worry about flare ups, no matter the climate (although external heat is a big trigger… Summer is rough) the only thing that makes them somewhat bearable is a cold compress. I even made a case for my ice pack so I’m less embarrassed with it. My nephew was born the other day and while I was holding him I had a flare up In my fingers and had to cut my time with him short because I was in pain. I feel like people don’t believe me when I say that it hurts, all they can see is the redness. I finally just stopped trying to explain it because I feel like they think I’m being dramatic. Anyway, I’m relieved that this is a place where I can ask questions and speak with people who might finally know how I feel and believe what I say as well. Nice to meet you all:)
I find the hardest part is explaining to people what the pain is like. They ask is it a sharp pain or an ache and it’s neither of these. The nearest I have come is to say it’s like the pain you get if you burn yourself.
Nice to meet you as well, and hope it helps yo being able to talk.
Welcome. I first started having full body pain and fatigue about 3 years ago. The Erythromelalgia started a few months after that. I personally haven’t gotten any better since then but I can say things are easier now than they were then. This is because I have had time to learn ways to live with my disability. It is especially hard at first because it is something new and scary. Some people will believe you and some won’t. I find that over time the people that care about you start to realize you haven’t just been the word’s greatest actor and start to believe you. The ones that don’t, go away. So it’s all good either way.
For now try to do wait you can not to aggravate it. Mine is on my hands so I avoid cooking on the stove and instead use a slow cooker, oven or microwave. I night 2 of those gloves used for grilling. I stay out of the heat and avoid using hot water in the shower. Also there are special mitts you leave on the freezer and put on at night, though I find they only stay cool for 15-20 mins.
Anyway, I know it’s tough right now. I can’t say if you’ll get better or not, but it will become easier to deal with.
The oven mitts sound like a really good idea. I sew things and I’m sure I could find a way to rig them with pouches for cold packs. It’s really taken a toll on me socially as well recently. Discomfort coupled with the visible and highly noticeable redness makes me pretty anxious around people when I have a flare up.
So sorry to hear you are struggling with EM, but please know you’re not alone. I’m newly diagnosed, and I’m still trying to get my doctor’s to understand how painful this condition can be. I finally got in to see a pain specialist familiar with EM, and even he didn’t address the pain
I have found this group to be SO helpful. It offers me treatment options as well as support. Unless you have dealt with something like this, it is really hard to understand. Hopeful that your next doctor’s appointment goes well.