Wasn't sure where else to put this, as it's a bit of a downer, and as you know, I do try to stay chirpy and positive most of the time.....
most...
The last week or so has seen some significant increase in spread for me, to quite a shocking degree. I'm feeling very down right now.
The CRPS in my left side had got to a definite line I could almost draw at the base of my neck about an inch above my clavicle. The last two days I have felt it creeping up my neck to just below my ear. The classics are all there now, the sudden sharp stabbing pains, the odd aches, the sensitivity, the stiffness.
My right hand has suddenly joined in, and I saw my pain doc the other day and had that confirmed. It's been so sudden I can't get my head around it. I'm struggling to know which hand to try to use for things like cooking and opening doors etc. it's mainly my knuckles, but also my finger pads (typing this is not fun).
In my left leg, it had reached the top of my thigh, but has now crept round to my left buttock and right round my hip. My hip joint is painful every day all of a sudden. Everything round there is scratchy sensitive and sore. It's also reaching up the left side of my back to join...
...my upper arm and shoulder area has now enlarged to include my underarm area, my upper left side round to my upper back, and my left breast. I've had quite a few more of the chest pain symptoms, mainly the sharp pains in my breast. They make me gasp and stop. I know it's not my heart in a clinical sense, but of course being in my chest it frightens me. My left breast is now out of bounds
, it's just too sensitive, and not in a good way. Poor husband.
I'm generally feeling crappy. I've had some sharp abdominal pains at times, my left heel is suddenly more painful, my foot pains have intensified, I ache all over and I've found myself wondering how many more walks with the family I've actually got in me.
I know it's winter, it's cold and damp, it's a stressful time, etc. I've been trying to stay positive, relaxed and occupied, but I've got no energy, and I'm in a patch of wanting to sit and cry at times. I think seeing my pain doc the other day didn't help really, because although she is lovely, I always come out feeling a bit desperate because I seem to have so few options, and there's not much but opiates as a pain relief option. I can't do that yet, once I do I won't be able to do my job.
There's always a bright spot
She thinks she has got me into an IVIg study that I asked about months ago, so that's positive, and hopefully even if nothing comes of that, I'll maybe get access to other trials and treatments.
I just feel I've lurched ahead a few years in the space of a week. It's scary and depressing. The pain is so much higher, and of course just when I need to do things and get about. Typical.
Sorry to drop this on you guys, but I just need a small pep talk...
Bram
