Living with Dercums Disease in the 21st Century!

Really,,, I thought this was more common in women??

So sorry to hear this, Ron.  I'll be praying that the pain managment works out for you.  One day at a time, kiddo.

Can't say I know anything about this one Ron, but I do know that there's an gal I know with Lupus, her name is Tanna, and its an inheirted genetic factor also..tied in with high tryglcerides. Drinking does nothing to help high trygycerides by the way, or drinking regular soda pop, or eating anything with an lot of sugar in it. For the young set....it's the "wine festivals" I think these days doing them in. No more then 4 ozs an day, not four bottles...or four glasses. 4 ozs. is moderation, anything over that is calling for trouble. Pain is caused by nerve endings, accupunture can deaden pain permanently. It literally klls all sensation of feeling anything. It may not stop the disease, but it will the pain. It makes morphine or any other such type drugs unnecessary to take. It can be used in the accute stages of cancer also.

I think it is a great idea to share this Ron - there may be people out there with unexplained symptoms who it will help. I am sorry you have to suffer with this awful disease.

I really don't believe that we are much farther forward with medical research as they would like us to believe. Indeed as Shirley recommended above I have found acupuncture a great help. I have always found my acupuncturist much better than the doctor! He initially found out about my gluten intolerence which the doctor had completely missed. He sorted out my chronic sinusitus when the doctor could only offer a long waiting list for a painful operation which only gave two years relief. You can also get acupuncture on the NHS these days.

Thanks for sharing your thoughts and suggestions regarding this one friends. I guess it's the only way to get people involved, talk about it and people say, what, whats Dercums Disease?

Having endured this for nearly four years since I was diagnosed I can tell you things get no easier, but it does seem to me now that there could be various types of Dercums disease, which incidentally is not infectious.

In some women it appears as widening of the hips for example, almost to the point of being described as 'flaps of skin' but in me it shows as fat lumps (lipomas) that is to say loose, rather than attached, and so not like a thrombosis might be.

I have also noticed that these lipomas seem to take it 'in turns' to deliver their painful blow. For example for 3 to 5 days they will be horrendously painful (dibilitating so in fact) making me gasp for breath as if a trapped nerve in my back (to the left of my spine) and after said period the lipomas in my arms, legs, spinal area, backside, neck, shoulders, stomach have 'their turn'. It continues like this day in, day out and is always painful.

The lumps can be as small as a grain of rice when I first notice them a twinge, an itch as if you have broken a blood vessel, but during the next few days to weeks these things develop under the skin in me, whereas my understanding is that some women as mentioned above will suffer externally so to speak and therefore more visible.

The lumps once formed never disappear, they just sit there making a painful nuisance of themselves in turn. Interestingly, or not, they have the ability to attach themselves to any muscle so if you think about that for a minute your heart, lungs, brain etc. Makes me wonder how many brain tumours that suddenly reduce in size are actually down to Dercums disease. Worth considering by the professionals.

There is very little known about this disease and no known cure so any update from those suffering can surely only help matters. I am still on heavy duty painkillers including slow release Morphine twice daily, Oramorph (liquid Morphine) for a quick fix, if and as needed, 2 x 500 mg Paracetomal every 4 to 6 hours, and Codeine Phosphate 30mg x 2 as required....a nightmare that has to be controlled differently almost every day!