Dercums Disease???

[Christinemt1964]

I was shoddily diagnosed with "dercums Disease about 10 years ago(basically this crappy dermatologist removed a fatty tumor from my back and had his assistant photocopy a page out of a medical book and handed it to me and said you have this). OK, I have looked up Dercums Disease and my lumps do not really fall into dercums category...Dercums sites say they mostly on the sides,back and stomach and can be large pendulous skin folds...well I have them all over my back,,,stomach...arms and a large one on my inner thigh...none are "pendulous" . I have other symptoms that I think have been blamed on CFS and Fibromyalgia such as tiredness,weight gain,dry skin,depression,extreme joint pain,etc.. Does anyone else know of anything else this can be or do you or anyone you know have this?I do not have medical insurance so I can not afford to keep going to the doctor and have them always blame things on my weight...I can stay on a 1000 cal diet and still not lose weight(and no nothing is wrong with my thyroid supposedly)...please...i would appreciate any info you may have...Thanks.

[Friday60]

Have you found a specialist ?
I think it may be possible my mum may have dercums.
Tahnks kindly,
Jacqui

[Kazza636]

Hi, I am in Australia and looking for people who have DD. Are there any Drs in Australia who understand this disease?? Thanks Karen

[anbuma]

i too think i have dercums disease.altho being diagnosed with fibro in 2005 my symptons gto worse-over last few weeks have small hard lumps in and around abdomen  and ecruciating  pain and aches ove rmy whole body.went to Dr today and he says i dont have dercums just because he couldnt feel the lumps and said the pains i have (which are not muscle pain)are fibro.when i said that to my Dr taht i have dercums he said he had never heard of it.if drs havent heard of it how do they knwo what symptons are.i have pain and swelling in my face,neck,left shoulder and around left shoulder,ahcy knees an pain in tops of my legs.
pain and thickened skin in my hands and feet.

[Diannne]

Hi there Di from Australia here. Wrongly diagnosed with Christian webber disease for years..now finally a new specialist has diagnosed Dercums and fibromyalgia. Such a relief in a way to understand why my feet feel like I am walking on glass. so painful. My stomach is mostly affected. I went and had "body sculpting" where they vacumn the lumps and freeze them ..Used for people who want to reshape their body. But I figured if it "disolved" fat lumps then why not try to dissolve my fat lumps (Dercums). Worked on a few lumps on my left side and under my breasts.. but not on rt. side. Expensive. but it gave me relief on areas where it worked. When I save enough will go back again.

[Dolly1956]

Hi, I too am in Australia and was diagnosed with type iii about 4 years ago. I do  not suffer from pendulous lipomas but multiple smaller chains which seem to  follow along muscle, nerves and bones. My rib cage/breasts were first affected followed by knees, thighs, soles of feet, Achilles tendons and now upper and under arms and stomach.
I am not obese, although my weight has become problematic causing  me to  have to  constantly diet and exercise (even though painful) to maintain some sort  of normality. I also  suffer from a lot of the other associated symptoms, so fully sympathize with anyone who suffers from this hideous disease.
Good  luck..
Dolly

[placidcharmer]

Hi, I am new to this forum.  I noticed your question about dercum's disease.  Are you currently on one of the other large dercum's websites?  There are about 3 or 4 of them out there to find out more information.  I am a survivor for most of my life.  I have the pendulous folds.  They say that these are from the heaviness of the lipomas and fluids that in there.

[MrsRobbo]

Hi, I am new to the community, but I have to agree with the others it really does sound like DD. I am a different case again to many. First of all I live in Australia and not many people here know anything about DD. I am not over weight at all and I am only 26 years old. I have had it for 6 years. I got it because my father has it. All I can do is say its great to be in a group that you can relate to. I have tryed to find out if there is any support with this disease and so far there is none in Australia.
Its great to not feel so alone with Dercums and I hope I can meet and help some people here.
Looking forward to getting to know you and being here to help each other.
Kind Regards
Mandy

[lumpylady1948]

Hi I have gone on Google and put in everything I can think of about Dercums and believe it or not have found some very interesting articles, I just put in "dercums and skeletal pain" and it came right up, I have just begun to have terrible skeletal pain along with all the usual, most of what you describe too so I feel you have the typical symptoms too, I don't have pendulous folds either but have many lipomas. Best wishes, Bev, R.I.

[dercumlady]

Hi - I hate to say this but you do sound like a typical Dercum's patient. Not everybody has large pendulous folds of tumours - but we all have exactly the symptoms you are describing. Find a good doctor who will help you manage the pain and then go to www.dercumshope.org for more information on the disease where we can help you answer any questions. You are lucky that the doctor actually recognised the disease - most have never heard of it!
Good luck, Cx