Dercum's Disease Support Group

Hi to you all, thought I'd drop by.

Went back to docs today as my ankles are now killng me and can't walk far. Went a few weeks ago and we both assumed it was cos I was still suffering the after effects of the dreaded flu virus at beg of year (didn't examine ankles) Well decided to 'inspect' my ankles last week due the indescribable pain I was getting and not being able to 'rotate' my ankles. I was shocked to discover more 'aliens' had landed, and as usual I can't have just one, oh no the little critters had to be symetrical and I now have one on the outside and underside of each ankle bone, grrrrrrrr!!!!

I could just about cope with the Dercum's in my life, as I've been living with it and it's pain for too many years to remember before being dxed, I could also cope with having now hundreds of the little suckers invading my body and morphing it into a blob of what it used to be, with the swelling and weight gain, but now, taking away my independece of being able to walk...aaaaarrrrrghh, it's just too much! So we've upped the pain meds, Gabapentin to try to add to the dihydracodeine and paracetamol and some gel to rub into everywhere that hurts. I could go on morphine, but it's my choice not to. I've been on it once in a flare and it was horrible as I was 'out of it' too much for my liking, yes the pain subsided, but I didn't like my independence being taken away from me.

So what next - is it wheelchair time? The thought horrifies me as I want and need to be inedependent!! One of my children needs a wheelchair (we opt for a buggy system) and my other needs one now and then, is there a 3 seater wheelchair on the market for my ever dependent and patient hubby to push (he's my rock)?!! lol! Could we be 'stacked' on top of one another - or is there a way I can push one in front of me whizzing along?! My kids are mentally able to actually use an electric wheelchair (well not without taking out too many people in the process,, lol!!). I guess I have to find some humour in this predicament!!

Reluctantly I've gotten my walking stick out, and I will hobble with that for a bit for the little walking I'm able to. I've been wondering why I've had a clicky jaw these past few weeks, and I've realised it's because I've been gritting my teeth with the pain. So, not only do I now hobble, have a droopy eye and dribble now and then with palsy (sorry, did I forget to mention that bit, yes to add insult to injury I suffer from facial paralysis now and then - not a good look I can tell you,) My jaw now does it's own clicky then when eating, oh the joys of life with Dercum's!! (FYI they don't think the palsy is related and MRI's all OK, but feel 'something' is pinching the 2 nerves in the face, and no we have gotten to the bottom of what the 'something' is yet).

Docs here in UK reluctant to take any of the lipomas out, but if my mobility doesn't improve to some degree think I'll have to shout and try and get at least one removed to see if it 'makes any difference'

Sorry to rant at my first time on here, but like many of you, am having a bad day and wonder whether this disease is not gonna stop until it has invaded every core of my being. I have too may to count, like many of you they started on my thighs, now have them ribs/stomach/arms (especially forearms) thighs - front and back and as well as the sides where they started, knees and even on each on the front of my shins as well as the back of them - arrrrgh

So sorry for a bit of a rant, but just needed to vent a bit.
Will drop by again soon.
Posted on 02/27/09, 01:02 pm