Sacrioliitis and Fibromyalgia Sufferer

ajp20

Hi all,

Im very new to this. Im a 19 year old male who suffers from sacrioliitis and fibro. I was diagnosed last year and when i looked at my xray i was shocked to see the joint crumbling, I had a MRI to rule out AS, so pleased about that. My consultant refered myself to the pain clinic and i have now been waiting eight months, but it is strange that i have never heard anything back from the rheumys, is this common? Everyday is a challenge, my whole body aches and every joint cracks, grinds and pops. I recently was refered to hospital for an ultrasound as i was having pain in the male genital area but thankfully testicular cancer was ruled out. So i am blaming the pain down to my sacrioliitis. I have to commute 20 miles to work everyday and my fatigue is really having an effect on my driving as well as the extreme pain i get from changing gears. I'm not sure whether to claim for DLA or not as having an automatic car would be so benificial. I work as a research technician at the university of st andrews and today i was in contact with a researcher from the uni who is researching AS, so im hoping i will find out more info and also post it on here for everyone to benefit from. I try to keep as fit as i can, yesterday i went out on my push bike, the first time in two years to see if i can manage it and in the first ten mins i had to stop as the pain was too much and my toes and fingers starting tingling and went numb.

Not sure if many people suffer from this combo but if theres any advice out there please help.

Regards,

Ash

jean123

Hi and welcome Ash,

My son got both his first degree and his PHD from St Andrews in the maths department...something to do with weather systems and wave theory :shock: :shock: :shock: He loved it there, married a girl he met there, and is now working in Edinburgh, as he refused to move from Scotland. He is Scottish, but was brought up in England.

BTW I have fibro too. Not much fun, is it :?:

Jean (Forum supervisor)

tillytop

Hello Ash and welcome from me too.

Glad you have found the forum and hope you will find it as helpful as I have done. I have Rheumatoid Arthritis so no experience of your particular difficulties but I am sure others will be along soon with wise words.

Love Tilly xxx

Pherstun

Hi Ash and welcome.

My chiropractor said I have sacro-iliac joint inflammation (ie on both sides) but the rheumy has recently told me I have borderline Ankylosing Spondylitis, not sure if I have both!

I know with my pain that sometimes (as at the moment) it seems to radiate to my groin area but it's probably from the back of my legs, so that doesn't surprise me regarding your pain, but it's good that you got it checked out.

Unfortunately these days it's even harder to claim DLA but it's worth getting it assessed. It's a good idea to go through CAB or if you're a member of Arthritis Care I think they have a department to help. They may be able to help with money towards getting an automatic car.

Re the pain clinic appointment, I would suggest contacting the consultant to chase it up, it may have got forgotten or the letter to you may have got lost in the post.

Keep us updated!