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Had fibromyalgia and chronic fatigue syndrome. Which doctor should I consult for adiposis dolorosa?

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Gastroenterologist, Surgical
Practicing since : 1989
Answered : 883 Questions
Hello, I need a doctor in Canada or Ontario would be better. My family doctor and I believe that I have Dercum's Disease, or Adiposis Dolorosa. My family doctor and I cannot find a doctor who specializes or even knows about this VERY RARE DISEASE. Could a doctor please help me. I have also had Fibromyalgia and Chronic Fatigue Syndrome for 18 years now. I am a 50 year old female.
Posted Mon, 18 Feb 2013 in Bones, Muscles and Joints
Answered by Dr. Ketan Vagholkar 4 hours later
Thanks for writing in.
Dercum's disease is XXXXXXX rare problem. The lipomas contain a significant amount of nervous tissues which cause severe neuralgic pain all over.
The ones which increase in size rapidly are the ones which need to be removed surgically. This can either be done by a orthopedic surgeon or a plastic surgeon preferably both working as a team so that no damage is caused to the major nerves.If the lesions are small but painful then just consuming painkillers would be harmful for health. I would then suggest that you seek the services of a pain clinic as that would be the best option for pain relief.
I hope this answers your querry.
With regards
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Follow-up: Had fibromyalgia and chronic fatigue syndrome. Which doctor should I consult for adiposis dolorosa? 20 days later
Thankyou for you response Dr. KetanVagholkar. I'm sorry I took so long to respond. I ended up in the hospital two weeks ago, yes I did try to take my own life for the first time as I could not stand the pain any longer. Thankfully God decided it was not my time. I am not proud of what I did, but I DID GET MY DIAGNOSIS OF ADIPOSIS DOLOROSIS IN THE HOSPITAL.

I have many large lipomas and hundreds of rice size ones. I have some low dose morphine 15mg. 2 x day and percocet 5mg. 2 x day., also iv lidocaine? every 2 months,
I'm still in pain, this progressing quickly, I am falling now, need a hospital bed and wheelchair, I emailed Red Cross for this help, but I STILL NEED A QUALIFIED SURGEON IN TORONTO OR ANYWHERE IN CANADA. I dont know what stage I am at. Please help me. My cognitive is not great and I'm declining and alone God Bless you. XXXXXXX
Answered by Dr. Ketan Vagholkar 49 minutes later
Thanks for the feedback.
The best way out would be to contact the surgery department of a state runned university teaching hospital in your region. Such hospitals are very well equiped with all specialities. What you now require the most is a pain specialist rather than a surgeon. Pain clinics are usually managed by the anaesthesia department.
i hope this advice provides you with road map for resolving your problem.
Above answer was peer-reviewed by
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