Hey there! Hope you’re having the best day ever. My name is Lori and I’m an alco…no wait, not that, hehe, I have Dercum’s Disease (I’m not an alcoholic btw, never have been).
I was Dx last year, but my symptoms began, gosh it’s hard to say, I first started noticing the lipomas probably 6 or 7 years ago, but by then I’d already had 2 hip replacements and been struggling with a Fibromyalgia/Chronic Fatiguie diagnosis since 2000. I wonder if it was really Dercum’s all along and it was only tiny little buggers so I didn’t notice or realize? I’ve had rather, what I’d call “fibrotic” tissue areas for tons of years, my breasts were already so bad that I was getting yearly Mamo’s by my early 40’s. So maybe it’s just been DD all along and no one realized. Especially since it seems to be so poorly known. When I started realizing that it might be what I had, I went to the Endocrinologist at the group practice where my PCF is, and she said “I’ve never heard of that disease and I went to a really good school.” UGH!
Of course I found all Dr. Herbst’s info on the web and gathered the diagnostic materials and headed to the Dermatologist, who concurred with me and sent me to Emory (I’m in the Atlanta area) where I see Dr. Arbiser. He is “treating” me, if you can call it that, I get Diclofinac 75 ER and take 3 turmeric 3x a day. Nothing else. So I feel like there is more that could be happening here but not sure where to turn, back to and Endo? Another Derm?
I am in pain management, was already, so I have that going for me. But when I have a flare, omg, nothing seems to help - and that’s where I am right now, in a flare, for about the last 3 weeks. Last year it went on, this time of year, for 3 months, right about the same time the CDC came down on pain mgmt docs and I got my pain meds cut right in the middle of that one - I wanted to just go into a coma till it was over. Yikes!
I’m working on the idea of starting a Youtube channel for folks like us, chronic disease, chronic pain, just chronic. I do everything I can to stay positive, keep going, plaster that smile on my face and try things that will help, from medication, to vibration, heating pads, hot baths, etc. And want to find out if anyone would be interested in seeing a channel about how to stay up beat when you have all these chronic problems, treatments to try, how to talk to your doctor, yoga poses that might help, using meditation, and so on, having live conversations to commiserate with each other. Stuff like that.
What do you think? Would you watch something like that? Would you want to participate? Contribute? Work together to help keep the DD community happy, share resources, talk about where you hurt, ask questions, and so on? I sure would love to do it, I’m one of those empathic co-dependent types that loves helping others, and when I do, it makes ME feel better. So, yeah…that’s where I’m coming from.
I know I’ve rambled a lot for a newbie, but I’m really happy to have found this community and hope that I’ll find it’s still active and there are like minded folks to chat with.
Thanks for having me!
Positively Painful Lori