I was asked for help and referrals to Doctors as one of a group of people with a very rare, crucifying disease: Dercum’s Disease, aka Adipose Dolorosa, etc.
I find it hard to be short. I pray this is edifying. I am going to add a PS.
We all hope for an official diagnosis so that we can understand and be understood. Having DD can be humiliating. There were people years ago who claimed to have DD and were managing its symptoms well.
I cannot recommend a Sydney Doctor. Someone else may? I live out of Brisbane, landed on the MDJunction Dercum’s Disease support group in the early days I think. A person suggested that I have DD based on my having multiple lipomas and inexplicable pain and fatigue that I related to the lipomas – the first back then were just a dull ache as if hit by a baseball/cricket bat behind the kidneys. I would roll on the floor. I took the suggestion to my GP and Psychiatrist. My Psychiatrist already knew of the condition and said he would agree with any medical diagnosis that way. My GP immediately researched DD on the net and said yes. 10 years down the track I still had no idea of how to treat it, and this is far more important.
10 years with a 30 yr growth history. We do not know what to expect next.
The difference between multiple lipomas/ angiolipomas, lipoedema and DD.
As you realize this is hard work answering, doing anything. I live close to insanity and am communicating to Doctors that watching this disease progress is inhumane and traumatizing of a family, made the worse by the lack of recognition, the lack of empathy and support.
May I quote Grant without his permission. He has large, very large prolific lipomas. His diagnosis was scrubbed from medical files. He says he does not want sympathy, just a doctor (someone) who will walk down this road with him – so he is not alone.
You asked a question. There is not much difference in truth between multiple lipomas/ angiolipomas, lipoedema and DD when there is pain. Angiolipomas can only be diagnosed by excision and pathology testing to see if a lipoma is blood filled or has blood in it. The blood indicates nerve entrapment due to bleeding… I cannot explain that. You only need one angiolipoma to establish you have DD to some degree, but you do not need any to diagnose DD if you have any form of pain connected with your lipomas.
Lipoedema/Lipedema is generalized painful, burning fat tissue in the lower leg. I believe that Dr Herbst will likely remove the distinction between DD and Lipoedema. My fat burns from feet to sternum in all limbs.
In 2013 I asked my GP to help me gain a formal diagnosis. He sent me to Prof Peter Soyer, a PA Hosp Dermatologist with other work sites and Professorial duties. He is extremely highly esteemed. Is that enough superlatives. He gave a clinical diagnosis. Around 2015 people who knew me ensured that my local hospital files indicated at the very front that I have this horrific disease. From 2013-2017 I would go to ER whenever I did not feel safe. Surely you know what that means.
I had burning chest pains from 2009. I coped with them, sort of, till 2014. I managed to have a gentle 6 pack, and had no idea that doing physical activity was splitting open my fat cells….???? I fell prey to malicious defamation without recourse – in fact none of those people can look me in the face. That meant I was without income and we inverted a mortgage without regret for the sake of one child. It meant I would bust my tissue cells open doing extremely heavy work and almost have to crawl into the house. I would time it so I could eat evening meal and bed down, so I only did the heavy stuff after 2PM. I also have had lumbar stenosis (L1 to L5 which improved with the help of prolotherapy, but that doctor directed me to do the heavy work and disbelieves that DD can be painful). I had surgery in 2013 for L4/5 fusion with pedicles. I could have been discharged on the 2nd morning after surgery but I asked about coping with the pain in my chest so I was left in hospital over the weekend.
I have knocked on every door, every door. I sat with my federal member and his PA recently. After 20 minutes he stopped the conversation. He said I came in intelligent and articulate, etc, but was beginning to go in circles. He said it was time for me to get home asap in account of my health. I have clawed my way into appointments at our regional hospital and cried my way out not able to walk or talk. I persisted till this week the plastics dept reassured me that there was no one in the hospital who thought I did not have Dercum’s Disease. They will only be able to do band-aide surgery on larger lipomas. Mine are not that gross, but intrusive, and multitudinous.
I won’t go into my symptoms but to say that the family feels the ‘heaviness,’ the helplessness and trauma of watching me struggle to walk and talk.
I was in a better place 6 months ago. I did more physical activity… I am clawing my way back.
Your question? An answer. Answers. A son found a caring social worker who found me a pro-active GP… who will try to find anything she can treat to lighten the load. In the meantime I have my regular GP and a more accessible GP. I am getting my back and pelvic regions examined in two bites: next week and 4 weeks followed by an appointment with Public Hosp Plastics… I pray they do some laparoscopic examination of under my ribs and oesophagus… that’s me.
You need answers that will not change your life but will surround you with understanding. Come to Brisbane. I have been fighting for a reason. I only hope that one day a politician will give voice to our needs because I can assure you that I have totally embarrassed myself telling people, crying. Oh, and some were embarrassed by me, my walking, my going around in circles when talking. I have had compassion from my pharmacists, enormous compassion and many tears as it tore me apart just to get to them at the back of the shop. And shop assistants who would ask me what has happened… they said I was describing everything used in torture. The new GP said there would be something wrong if I did not get depressed at some point. My Federal Member said that I would have to have bouts of melancholy. I always tell every doctor that these are secondary symptoms and cannot be fixed by a pill. I explain that it would be wrong of me not to cry in compassion for my wife, my son at home, my ill daughter and so on.
I want to add these two thoughts about me: I know when I am judged by others, and the helplessness family feels. I was put into my worst place for 3 years by neuropathic pain medications, and very nearly killed by them. That is a longer story.
Write to your state and federal health ministers. Tell them any degree of humanity and compassion needs to be granted in good faith to those who have proven themselves to be good citizens… and suffer in such a crucifying way…
Whatever you do, go gut friendly in your food plan: no sugar, no grains, no seeds. I have fooled around enough with food. There is no magic pill, but as an insurance policy eat turmeric based meals. I am tired of writing bout them. The only insurance policy I can suggest is Advanced Bionutritionals Advanced Blood Sugar Forumla to offset what little sugar creeps in.
PS There is a GoFundMe site in which I really need upwards of $AUD 30,000, not only for myself, but to share some non-medical, but compassionate hope with others as well. It pictures me in better days: https://www.gofundme.com/hope-for-michaels-rare-disease
Goodnight. Michael Uebergang