Living with Dercums Disease in the 21st Century!

Thanks Edward I can tell you I have honestly cried with pain until the Morphine was introduced. The condition really is unbelievably painful and there is no respite, it's every day, every night!

It will be interesting to see if my weight loss gives any relief. Anna has me on a diet that has allowed her to remove in excess of 75 pounds of fat, she looks wonderful. I hope to replicate that, we shall see.

One visit to hospital was to remove a lipoma for tests. The yellow lump of fat (about an inch or so in length and maybe three quarters of an inch in width) was 'popped out' from under the skin like a boil, but came back 'safe' after tests and non-malignant. Having seen it with the naked eye so to speak, the lump didn't show any visible signs of blood going through it (when blood goes through them, they are referred to as 'angio-lipomas') and this is when they are at their most painful with the ability to grow for 3 to 5 days and then shrink back to the original size, but once they appear, they don't disappear!

The hospital considered cutting them out, but when they started counting them up throughout my body they changed their mind saying we would have to "cut you to ribbons". 

Your last sentence hits the nail on the head Edward. To look at me (whilst sedated with painkillers) you wouldn't know that I have such a painful condition.

Well Ron I really did not realize what you are suffering, and yes your avatar gives a very different impression, it must be really terrible for you and I am amazed you keep up the world interests and the Poe banter as you do, quite an inspiration.

All the people I know who have taken Morphine say it makes them muzzy headed and they feel they are not   with-it,  but it seems to suit you thank goodness.

You certainly have my sympathy and you too Edward.

Thanks for your comment Peggy. In truth I have aged 10 years or so since that avatar picture, but it's the only one that I have with Anna.

As for the Morphine, I am on slow release tablets twice daily, whereas I think the Oramorph - liquid Morphine (might) have a tendency to make some people 'muzzy headed' as you say, depending on the dose. Where's Jason he'll know the answer to this one.

Inspiration? Don't know about that, but was referred to by Pastor Nigel James travelling with American Rock Band 'Third Day' as 'Legendary'.

Our dear friend Peter Evans was quick to call me Leg End Harry! lol

Got back from the hospital who want electrocardiogram to see if the heart chambers are pumping as best they can and a CT scan to see a 3d version of these painful lipomas.

One thing I have learned is that achohol affects them within a few minutes. A social 'Grouse' becomes a painful 3 to 5 days until they choose to relent.

Seems very little is known about this condition still so any input from anybody suffering the same disease is welcome.

I'd actually never heard of Dercums prior to you Ron. I've just Googled it read through the information, it sounds truly awful, and the fact that there is no cure !

I had no idea one Grouse would produce such painful results, I assume that it's not just alcohol that can bring on the pain ?

I can understand your need to know more about this horrible disease. 

Ron, I'm so sorry to hear this.  I'll be praying that your pain will be eased.  Did you ever think of keeping a journal about what conditions or situations are going on in your life that causes it to flare up?  Maybe if you do, you'll notice a pattern and can take steps to avoid whatever might aggravate the condition.  Just a thought.

Hang in there kiddo. xoxo

Yes, certainly have Ruth and that's how I noticed the alchohol. Apart from that the hot weather doesn't help because those of us who suffer it have a body temperature higher than the average person apparently.

Anna says I glow like a radiator in bed, meaning the heat from me radiates to her, she loves it, but I am always looking for the windows open and fans going.

Such is life and there are others worse off.