Hi all this is the only thread I could find on PMC's so I'm just gonna pour it out,
I got the referal to PMC and duly received a huge questionaire which was to be back within a week, none of the questions in it seemed to fit my situation, eg
question 1, when did your pain problem, unjury start, how long have you had this problem?
In my case I could only reply, I am 38yrs old now but it began in my early teens with constant cold aching pain in my legs that was brushed off as growing pains, then I had my first dislocation and it has continued since then, with various gynae issues, numerous dislocations of various joints, fractures, surgeries etc along the way. By the time I got to my early 20's I thought everyone went through life in pain so stopped complaining about it and diverted all my energy into my business, now my body has fell apart, refused to take it anymore, quite literally because of all the years ignoring the problem cause everyone said there was nothing wrong with me, but the pain cant be ignored anymore. Also it isn't post injury pain or a slow progressive illness I was born with it.
How do you answer silly questions that don't apply to your problem? Been sent to this cause my sleep patern is non existent due to pain, getting bout 3 hour max, now n then, not every night. On enuf meds to fell a horse, pick me up n shake me and I swear I'll rattle, on crutches, got various splints, supports etc and a crumbling spine as proved by MRI.
So on reading some of your info on this thread about the excersises etc and some of the responses some of you have had when you've mentioned HMS or EDS I am quite frankly scared about going now!
I'm in Fife in Scotland and if some of you down south in big towns near to Leeds where prof Bird is so the syndrome should be recognised-ish in the surounding areas are getting those responses,,, what hope do I have in the wee clinic in Fife I have been reffered to of even getting someone who may have heard of the syndrome never mind understand and be able to treat??
I am emotionally fragile at the moment, after so long of not being able to admit I was in pain, of having doctors and specialist as well as family do the, 'it's all in your head, your just after attention bit' If anyone does the 'I'm not trying hard enough, I'm letting the pain win bit' I may commit murder or stagger out bawling like a baby.
Wondering if this is such a good idea now?