If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Receiving too many notifications? Adjust your notification settings.
ankylosing spondylitis

Hi there I've recently been diagnosed with ankylosing spondylitis and scholorosis of the spine . I'm only 27 and havr been on a infusion called infliximab but unfortunately my body rejected the drug and gave me a bad allergic reaction with tightening of the chest and problems breathing. I've now been offered a new drug called golimumab which is a self inject. Is anyone else on here have the same disedis as me and how have you managed to control your pain to get on with daily activities. I've had to stop horse riding cut my hours down at a farm where I work and having to claim benefits. My partner left me as I wasn't giving him sex any lomger due to the pain.
Replies
Disability Gamechanger - 2019
Hi @J3nny. Sorry to hear of your condition and how it has affected you. Re the last point you made - people can be so selfish. I hope you are managing to keep your spirits up none the less.
You may find our Chronic pain discussion of interest. Our members may be able to provide useful tips for you
My back started aching when I was about 38 and I'm 62 now. I woke up aching, tired and got home aching/tired. Dr said it was spondylitis with no real cure. Keep body moving basically. I tried all the normal stuff that folk with this pain.
Over the years i'm on the floor in pain taking time off work about once every two years then over the last recent years it happens more. My mild cp gave me shorter left leg bout 12mm and drop foot with bit of a curve on my spine.
I was ready to pay up to 10 grand for back op but surgen said might make it worse and refused to do it (at least he was honest and didnt rip me off and do it). So the nhs are going to inject me with nerve numbing pain relief early November. If it works it may last a few months at which point I could go private and ask for a Rhizolysis injection that basically kills those nerves.
Hence I won't feel the pain. Thats the theory anyway.
I have also been to a private limb/shoe clinic to get proper insoles and shoe raise because my walking gaite is not good.
I'm not sure if any of this helps you but thought I'd tell you anyway. Hope you get answers and maybe they will discover better pain reliefs as time goes on.
We held each other and hoped for better times, I’m male if it helps and don’t expect a sex rota from my partner or to be pencilled in for a time and date- should be spontaneous.
Sounds like your better off without them.
🙂