Adiposis Dolorosa

Adiposis Dolorosa aka Dercums Disease is listed as a rare disease for which there is no known cure. The disease is painful, at times totally debilitating and reveals itself as fat lumps (lipomas) under the skin in my case all over my body. One website describes it as No 2 for 'rarest disease' and No 3 for 'most painful' on the Earth! I am unable to agree or disagree those figures, but the pain is relentless and each lipoma can 'fire up' at any time, without it following any regular pattern.

Yes I have this condition, syndrome, disease call it what you will that was identified more than 130 years ago. Nothing has been done to find a cure it seems and in the UK there appear to be just 22 people who suffer with this equally weird sounding 'thing' called Adiposis Dolorosa.

The benign lipomas can appear anywhere on the body, at any time and once established never go away. In any area, limb, muscle they can grow for about five or six days and are very painful whilst doing so, and then shrink back to a non regular size, but they never disappear once established.

Many in my back (flank) are linear and seem to attach themselves to the spine and/or wrap around nerves, which I guess is where the pain comes from. Medication in the form of MST (slow release morphine) twice daily, Oramorph (liquid morphine for a quick fix as required) and 2 x 500 Paracetamol 24/7 help to make the pain bearable, but the bottom line is get used to it, there is no cure!

If you have lipomas on your body (and most of us do) you might want to consider this post, especially if they are painful areas that initially you might dismiss, but over time are recurrent.

By all means do post a response here in the forum.

Have I found a connection I wonder?

During my 21 years plus in the pest control industry I have been bitten and scratched by Cats many times and thus am now wondering if Cat Scratch Fever or CSD as it is also known could be responsible for my Dercums (Adiposis Dolorosa).

See http://en.wikipedia.org/wiki/Cat-scratch_disease if you are interested in seeing what might have 'triggered' my Dercums.

My friend has mulitple scerosis was told it may of been picked up from an sick dog when she was an kid also.  Last time I saw her she was having weekly shots from it...to try to help her in walking. You just never know...about the only thing I've ever caught from an cat was "ring worm" when I was an little girl...and it was taken care of by the doctor. But getting the case of shingles here an couple of years ago was super painful for me, and I have occasional set backs from it from time to time. Caused by the chicken pox virus... I had them very bad when I was an kid. My aunt had polio...but surprisingly it went away and as an adult she was normal again. Had five kids of her own also.