Pain management - nhs docs can't seem to help?!
Hi there!
I'm a 39F based in London UK, and was dx with bilateral hip dysplasia in September by a hip specialist after a lifetime of hip pain that has recently got extremely bad. I'm in a general fit of RAGE that it took one basic x-ray to see that I had hip dysplasia and didn't just have "bad posture" as had been suggested countless times. I also don't have arthritis which I see as a miracle and have had a lifelong dx of hypermobility which has recently been "upgraded" to hEDS!
I've been put on an "urgent" waiting list for PAO surgery. Not thrilled about the prospect of PAO surgery... or any surgery tbh! but I won't be seeing the surgeon until the end of January 2027, and until then I can't access anything for pain relief.
I'm taking dihydrocodeine with paracetamol at night, but it doesn't do anything. I can't sleep due to the pain.
I also can't walk as much or as well as I used to and used to be able to walk 20k a day with little to no pain or aches, now I hardly leave the house unless necessary, to go to work (have a hybrid office job, wfh most of the week) or to go to the shops or see friends). I'm just limping all the time, and feel like my hip joint and legs are splintering outwards about to burst out of my skin.
I'm struggling with the pain while walking so much. All I want to do is go on a nice, long walk but after 5000 steps (about 2.2 miles) my hips start to seize up and the pain is agonising. It's destroyed my mental health, I'm so completely drained and feel like a shadow of myself snd the person I was a year ago.
I feel like the Tin Man when he goes rusty.
I was given physio in the Spring but it made it worse (which was when my physio suggested I see a specialist and thus the dysplasia diagnosis) and I was previously a regular gym goer. Swimming is okay, but sadly incredibly impractical with a 9-5 (the swim times for adults is 6-7am and 8pm to 10pm!) and the extreme faff of swimming generally....
I miss being able to stay active, and I miss being able to SLEEP.
My GP can't seem to help. Ice doesnt work. Heat provides comfort but not pain relief. I also have endometriosis (which is managed and not an issue at the mo) and the tens machine I have for that just seems to irritate it. I try and get regular massages (they comment on how stiff my muscles are!) I try and do myofascial release with massage balls, I have an acupressure mat. I'm on the waiting list for NHS Acupuncture and might fork out privately but money is tight!
I just don't know what to do anymore. My mobility has become so restricted and I can't even sleep. I keep begging for help, but it's all so far away and caught up in waiting lists.
Any advice would be really helpful! Thank you.