Dercum's Disease? not CFS or Fibro

I was diagnosed throughout the last twenty years with CFS and Fibromyalgia in addition to being told I was a hypochondriac and that I would feel so much better if I lost weight (in 6 years I gained almost 100 lbs). Then,
two years back, the diagnosis was an IgG deficiency and Vitamin D3 deficiency, and then, Dercums, a rare incurable disease which can be fatal (tumors can grow in your lungs and heart and kill you and behind your eyes and can cause blindness). Could my IgG have made me susceptible to bringing on this disease? There seem to be only a handfull of doctors who will even try to help patients with Dercums, Dr. Karen Herbst in Ca. is the most significant but so far I think that they are saying this is hereditary. But I wonder if treating these other conditions, along with dietary changes may eleviate my problems? I get 3ccs of gamma and B-12 shots monthly.

[PlateletGal]

It sounds like you aren't sure whether or not you have this rare condition. I looked at the symptoms of this rare disease and sheesh.... they sound like what many CFS patients go through. But many CFS patients don't get these lumps all over their bodies.. like Dercum's patients do.

I would think that if you have Dercum's disease, which is an autoimmune condition, then your low IgG could have contributed to your diagnosis. I also thought I would mention that I've met two people (online and one is my friend's wife) who have an immunodeficiency and were diagnosed after having a viral infection and/or CFS diagnosis.

[suzimore]

I have this condition and was dianosed in 11/07, but I wonderabout building up the immune system, if that is possible, may help me to fight it. With my doctor's monitoring, I am following about 80 % of the dietary and pharmaceutical recommendations  This consists of  the meds she mentions, There are omega3s in almost everything I eat including milk,the rest of the food is fish and chicken, eggs ad turkey, fiber everything in breads and cereals and many geen and leafy vegetables and very bright and dark fruits as well as  morning juice regime  of four or five juices, one ounce a piece of acai, noni, resveratrol, mangosteen and pomgranate,   Every morning I use a MCT fluid on top of my cereal and yogurt. I take 3000 units of D3 daily because I have the Viamin D3 deficiency. The money I spend on meds for pain of dercums, blood pressure, thyroid, GERD, Gout, OA   and the juices, the various vitamins (Strovite, Potassium, Glycine, Co OxyQ10, Flaxseed oil, cod liver, lovaza, etc) would make your head  spin.
I feel like all I am doing is working for my meds but without them, I have no energy and am in intense pain.

[PlateletGal]

I understand how you feel. I'm taking numerous supplements as well. There are things that can help build your immune system.... consider googling and reading about:

olive leaf extract
Host Defense
Transfer Factor

If you decide to try any of these products, please consult with your physician first.

[Suziall]

I'm another Suzi, in the UK and have been diagnosed with Dercoms for 20 years.  The lumps are increasing in number and size - from neck to knees.  I've just been reading about somr research re. Vitamin d and ato-immune diseases.  As the medical world don't really want to know about us, I'm wondering if anyone else out there has tried supplementing with Vitamin D?

[susanb106]

Hi I live in UK and have been diagnosed with Dercums for four years, at the moment i am struggling to get a consultant to take on my case i have had various appointments for trapped nerves biopsies and heart disease (I ended up with six stents due to blocked arteries which i suspect could be due to having dercums! I feel un - listened to  by the medical profession as a result and am at a loss to what i should do next, any advice?
Susan

[Caliburnus]

im trev, im in the mids uk, ive dercums as have all males in my family(dads side) have had larger lumps out but now am getting rapid growths on my torso, was always on my arms and legs before,. A lot of onliners talk of other symtems(?) i suffer low afternoon energy and some days can hardly keep eyes open after 2pm. im a little overweight at 14st 2,5ft 10" tall and lead an active outdoor working life.My dad has been ill with pain(trapped nerves ) and thrombosis for 6 months and his health has decreased by 60% this year ..
Is this what i have to look forward too as well, im 42 and a little worried about what people say but dont say about dercums. doctors have never mentioned other symtoms (symptoms) to me..what are they..
thanks
Trev