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Durcums more information needed about types
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Durcums more information needed about types

I have had Dercums Disease for many years but this is the first time I have heard anyone say about Type 11 or other types. How do you know the type you have? My consultant many years ago said it was Dercum's and told me to look on the internet for information regarding it, but this can be very hard to find.  Also any time I see a new doctor for anything I have to try to explain. Does anyone know a good site to get info from. I thought I had found one in USA but never heard from then, so think either site has shut or person I e mailed does no longer have the leaflet regarding Dercums.  I have had many lumps removed but only when they get very painful, I also have constant pain in my legs and tendon problems in my shoulders & Ankles.  Does anyone know of any research that I could look into to see if there is anything all us have in common (eg Blood Group) I am now on 5 types on pain killers and I am still in pain.
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Avatar_dr_f_tn
Hi,
How are you? According to an article by Yousefi et al in Medscape, the different types of Dercum Disease can be identified according to the spread of pain- type I, or the juxta-articular type, with painful folds of fat on the inside of the knees and/or on the hips; type II, or the diffuse, generalized type, where widespread pain from fatty tissue is found, apart from that of type I, also often in the dorsal upper-arm fat, in the axillary and gluteal fat, in the stomach wall, in dorsal fat folds, and on the soles of the feet; and type III, or the lipomatosis, nodular type, with intense pain in and around multiple lipomas, sometimes in the absence of general obesity; lipomas are approximately 0.5-4 cm, soft, and attached to the surrounding tissue. There are several references that could be of help at the end of the article. Take care and do keep us posted.
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Avatar_f_tn
Greetings to you both. I have Dercums type III and spend most of my day in pain. I have a wonderful doctor that has several patients with the disease. This helps all of us collectively and individually. I am always searching for help and of course a remedy. Please let me know if there are any breakthroughs for type III. Many thanks...DG
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Avatar_f_tn
Hi, I was told I had Dercums disease about 10years ago but that was it! Basically a blatant statement from a dermatologist ,but he never explained all of the ramifications it would have on my life. In the mean time I have had multiple diagnoses or questionable diagnoses that nobody ever mentioned s Dercum. All of the doctors I have been treated from have treated specific issues but none of them have ever mentioned Dercum's. It wasn't until about 3weeks ago that I saw online how someone was diagnosed with this and had the same multitude of problems I have.I then realized that everything I had been seeking treatment for all of these years was related to Dercum's. I have also been since diagnosed with fibromyalgia,some sort of connective tissue disorder as they put it.possible rheumatoid arthritis,severe migraine headaches causing migraine strokes.severe memory problems,chills,sweats.I lose my balance and fall easily ,get extremely tired and have anxiety disorders depression,panic disorder,and diabetes 2. and am an Rn but have been on disability for the last 6years.When I read about this I called the Dermatologist that diagnosed me 10years ago and asked him why didn't he tell me what it entailed,his response was I knew how to diagnose it but I don't know anything about it,He is 60years old and stated all of his years of practice I am the only one with that diagnosis,so I asked him to inform my rheumatologist of the diagnosis,which he did.My rheumatologist 62years old said he only saw 1patient in his career with it.Then he told me there is no treatment that it is a "glorified fibromyalgia".He said it isn't a disease it is a syndrome ,and I am already on pain meds.
       I am so sorry for how long this post is but my main concern is my pain is extremely out of control and when I read they use methotrexate at times and told the Rheumatologist his response was so I will order it.He asked what dose? Okay so I really need help! I am in CT and need to find someone who treats this that can help me because this is horrible! I need to know what to do at this point and if I need surgery to remove some of the more painful lipomas or if anyone should look to see if they are near any organs.I was also considering gastric bypass surgery and read that would not be very effective because there is a different fat metabolism involved with this.Can someone please help and tell me what is true and what isn't I am only 49 and have already been on disability 6years. Thank You Very Much
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