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.
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.
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
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
I have had durcums for many years and my lumps can be very painful I have been to see my g.p about this and have been told that I cannot have these lumps removed as the nhs do not consider this to be an emergency.
The fact of the matter is I have had to live this this for a very long while and am begining to find it very hard to live with.if anyone from the nhs in cornwall reads this I help some lumps removed any help would be great.
hi, im 57 years old developed lumps in 4 to 5 years base of my c spine both arms and have recently been diagnosed with durcums,its very rare hence not much is truely know by many doctors and or rheumatology clinics,i was lucky i saw a private clinic specilist and had the bigger 4 lipomas removed ,unlike the normal fatty lumps that they say look a bit like a small breat implant as in soft spongy sphere shaped and pop out like shelling peas mine were in fact quite dark ropey they had grown around my biceps and took a lot of cutting to remove,im left with scars large dents where i once had filling and although i no they are out its un sightly on a females arms for life.the difference for me is that a ct has shown i have a great deal of it inside my liver my pancreas and around kidneys,which they cannot get out i understand without great risk to life.its a long drawn out process for me several years of wrong dianosis and no treatment other than painkillers,truth is it attacks us all in different ways many people have illness connected to it ie erlos danloss,madelungs,adrenal insuffienstsy and the links are still being found to similar diseases,its a genetic issue so genetic testing is a way forward ive been told its linked with dementia as it causes depression low mood personality changes and or physcotic behaviour none of which i am suffering as of yet ,the specilists i no of personally are at royal free hospital london whittington which im under and doctor wong,and a professer kidd at royal free who are endocronologists and have knowledge of durcums.the best at present for me is pain relief ,a knee replacement as bone is soft.pain injections ,morphine based pain relief is avail if needed and a mental health team ,and physio .im also in pain and weakness of legs knees and joints throughout my whole body.for many years i was just told i was obese dispite diets and never ever getting anywhere i was told its just arthritis and swollen joints truth is doctors dont know about it its a very rare disease ,often mis diagnosed so look at all links to it before you decide its what you have is my advice if you can say it fits in everyway then press for specialist treatment asap,there is no cure and it is shortening lives ,so get it looked into properly and look for a pain treatment poss operation to remove painful lipomas and its just be as fit as possible to get weight off swimming or light excersise as it proves to help with mood and dementia links.my only advice is to control weight keep mobile for as long as you can see a doc who knows his stuff and look for a good quality of life,enjoy what we have for as long as we can.good luck to all of you who like me feel a bit lost and a bit scared.im looking to join a durcums forum for more info than just my own .
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