new to group and hello to anyone in the uk

[Guest guest]

I have had FMS for many years and in the last ten years I have

developed RSD in my hands and left side in general. I work from home

as a piano teacher! and struggle to keep spirits up and to keep

positive. Its only pain is what I tell myself and I try to keep busy

doing crafts and reading and stroking my cats (cat-therapy).

Nevertheless, come the night comes the moment of truth. You can run

but you can't hide! I take a raft of medication - arthotec

antiepileptic drugs for rsd anti depressants etc etc....... I am

surprised that I can still stand somedays. The hardest part of

managing this condition is getting the balance right between doing

nothing and doing the amount that will not wipe you out for the next

three or four days. Its that balancing that is the worst part about

it to me. I am lucky in that my hubby helps as much as he can and

also that I am not at all houseproud anymore. If things are left then

they are left. If I am wiped out by doing too much then I allow

myself to rest until I begin to feel better and that has become a way

of life. Last night I fell asleep sitting on the edge of the bed

before I get undressed a record even for me!

My main regret is that my kids don't remember me as a young and

energetic woman. I am in constant pain in my neck shoulders and

hands and now more recently in my hips, I am gaining weight and it

would be great to find a cure. It will happen!