This orphan disease can often create mind breaking pain. Since doctors and pain specialists have not even heard of it it is difficult to get any help other than pain pills and antidepressants. I have seen on line that having specialists in different fields may be beneficial. Finding anyone interested in helping with Dercum’s has been a bust, I am unable to get referrals. I hope to be moving soon and will have different providers available. A big problem for me is that I did not get this disease until I became elderly. Most screenings for diseases are stopped after age 70. Insurances don’t want to invest monies in helping the elderly as they feel since they will be dying soon why bother. Expensive tests are not encouraged. The disease has progressed rapidly and I still haven’t had a MRI. I have hundreds of painful lipomas in my legs, arms, trunk and chest. They are both close to the surface and deep. I am getting large swollen areas in my legs and one below my collarbone. Since they are not hard they have been brushed off as a consequence of arthritis by my doctor. Is anyone else getting these? Thank you for any insight you may have.