Is there anyone on here who has Dercums Disease?

[Gingerapple]

I am looking for fellow sufferers of Dercums Disease ....Anyone?

[hypercat54]

I have googled this and found this link. I don't know if it any good to you. x

dercums.org/

[Gingerapple in reply to hypercat54]

Hi hypercat54. That is so kind of you🌻however, I do know what is my is I have had it for quite a few years. I was actually wondering if there was anyone else here who has it, just to not feel isolated and wanted to exchange thoughts or information. Thank you so much for taking the time to answer me and the thoughtfulness in sending a link.

I hope you have a lovely evening 🌻🌻❤

[hypercat54 in reply to Gingerapple]

Thank you. You are very welcome. I thought there was maybe a forum on the link which is why I sent it to you. x

[Gingerapple in reply to hypercat54]

There are a few places, forums, but they are in America and some of these links are very old. It is an incurable disease and people don't communicate or probably aren't interested. Thank you anyway! 😊

[hypercat54 in reply to Gingerapple]

How about fb? x

[Gingerapple in reply to hypercat54]

Facebook? I wouldn't try there....but it's ok, at least I have friends on the British Lung Forum.....thats always a nice place to chat. Thanks very much, youre very kind 🌼🌼

[Elle2701]

Hi, I’ve had dercums disease for a number of years as well as Sjögren, Raynauds, peripheral neuropathy, fibromyalgia & others ☹️. Just dealing with my rheumatologist to try & get the lumps that are causing me significant pain removed. Hope you are doing ok x

[Gingerapple in reply to Elle2701]

Hi Elle, thanks so much for replying. I just needed to know I wasn't the only one on the Forum who suffers from it. I have a cross-over Dercums to Fibromyalgia. It's pretty hard having such a lot of physical pain coupled with breathlessness. Do you exercise at all? I go to the gym every day and also swim as best I can. I hope you are having a good day today 😊🤗Hugs to You, Bev xx

[Elle2701 in reply to Gingerapple]

Bev, yes I work full time from home, which is a huge struggle, but the bills need paying. I am very lucky that I have a hydro pool 5 minutes down the road so do 2 hour hydro circuits sessions there & walk the dog as much as I can. It’s not been good recently & ive had some bloods come back that may indicate more things wrong ☹️. They are retesting next month & am hoping it’s just one of the diseases having a funny 🤞. I’ve been getting a lot of headaches, dizziness & exhaustion do not trying to do too much. I don’t think the weathers helping. Am off to hydro tonight so am hoping to feel better after that. Have a great weekend x

[Smoggy19]

I thought that l was alone with this, I'm so glad that I found this Group.

[Gingerapple in reply to Smoggy19]

Hi Smoggy,

Yes, there are people n the forum generally who have everything..:)) but maybe not at the same time!

Have a good weekend, let's chat when you have time, love Bev xxx

[Smoggy19]

I'm new to this, my GP has sent me for ultrasound tests and said that they are Lipomas but they hurt and feel like they are flipping on the bottom of my ribcage causing when I move a certain way.

[Gingerapple in reply to Smoggy19]

Hi Smoggy,

Yes they do that. Dercums disease is incurable, there is no research going on because too few people have it. Let me know what your GP says....🤗🌹❤

[JTA7]

Hi there, I went to see a private consultant on Monday and I’ve just been given this diagnosis. Good to have found a community here and not feel so isolated. I don’t think much is known about this condition in the UK, all the resources I’ve seen are from the US. I just got back from my GP today for another matter and I told her about the diagnosis (she’s never heard of it). I’m in the process of doing some research about it just so I know how to make lifestyle adjustments (seeing as there’s no cure for this) and just to understand it a bit more (to stop my brain from freaking out).