Quote:
Originally Posted by BellatrixBlack
Hi, I hope you don't mind me replying, my name's Charlotte and I was diagnosed with Sacroiliac Joint Dysfunction a few months ago, I'm only seventeen years old so it's really difficult to keep up a part time job, and college and applying for uni this year whilst getting on with my ack problem. It's apparently quite rare for someone to get it so young. I really struggle with it and was in hospital for three weeks, they told me it was all in my head and they had done EVERY hospital check, but referred me to the pain clinic and within half an hour I was diagnosed, it was really hard for me, being a teenager and taking tramadol like their smarties is horrilble, it really gets me down and even though I try joke about it it makes me want to cry as I can't do normal things like every other teenager on the planet. I had my injections 2 days ago and they have stopped the backache, but i'm really worried because my stomach has bloated and become rock hard and I have a constant ache in it. I'm really struggling and will ring the hospital tomorrow if it doesn't calm down. I was so happy to find this forum as no-one I know has this disease and so it makes me feel like I'm not alone!!!  |
Hi BellatrixBlack,
I know it's over a year since your post but I am hoping you are still checking this forum as I would like to know how you're getting on because your story is similar to mine.
I have suffered with SI joint dysfunction since I was little due to a heavy handed midwife pushing my hip the wromg way when she checked them just hours after my birth.
I couldn't do forward rolls, jump a hurdle etc when at Primary School and like you I was told it was in my head. Luckily my parents pushed the doctors to investigate further because they believed me although when I was 18 I was told to come back when I was 50 for a hip replacement!
I managed with anti-inflammatories and physio for many years until in 2002 my L5 disc became prolapsed (because of the SI joint issues) and I then couldn't walk at all because of the pressure it put on my SI joint.
My hip feels like it doesn't fit properly, abit like if you took the leg off a barbie doll and out it back on sideways...it wouldn't fit and that's how my hip/SI joint has felt for as long as I can remember.
I finally was diagnosed with SI joint dysfunction in 2003 but I was also told had the doctors got it right when I was 18 they could have manipulated it back but due to the disc problems I now have, if they tried to manipulate it there is a high chance my spine will react by unwinding and I will end up in a wheelchair!
I've had injections and tests but I've not found any that gave good enough pain relief.
I now have Fibromyalgia, IBS and a sleep condition (similar to narcolepsy) and a swollen foot all of which are side effects of taking strong pain killers for many years.
I delayed taking morphine for 4 years but I now take 38 tablets a day including Oxycodone.
The Oxycodone does help more but every morning I struggle to get out of bed due to the pain and I struggle with work and with everythng I do. I use a stick when walking and an SI Joint belt but I try not to use the belt too much because I don't want to become reliant on it.
I would love to have SI Joint Fusion Surgery but I've read so many dufferent stories of people still having pain after surgery and when I was first diagnosed by GP told me to be careful of anyone saying they can cure me and avoid surgery unlessy could guarantee I would be cured.
i would love to hear from you or anyone else with SI Joint Dysfunction who has had similar or different experiences to me and if anyone has had surgery and it's been successful, please let me know.
Thanks
Rach