Some advice needed from those who are long-diagnlsed

Hi everyone

I recently popped a post in the introduction section but thought it would be good to say hi here too, and see if I got some replies.

I’m 38, I had my hip replaced in October due to hip dysplasia causing secondary severe arthritis. It’s been a rough road due to complex surgery and a very long build up towards it due to Covid delays. I’ve found it very difficult, and it was a hard decision to make. Not to put anyone off a hip replacement as it’s certainly significantly better than before, I’m just not on the usual recovery pathway.

I was really hoping for a break and to get my health and fitness back after six long years from diagnosis to surgery, but now I have a lot of concerns about my knee. Its the opposite knee to my op leg and took a lot of pressure when I couldn’t walk properly. It’s been crunching and crackling for ages (crepitus), X-rays are normal and I was discharged twice as I didn’t have pain or stiffness. I still don’t, and they were hoping it would level out now my hip is done. It’s quieter, but the noise/sensation is still there and I’m very worried it’s indicative of cartilage breakdown. I can’t have a MRI until next spring when the hip is stable, and they’ve agreed for me to chat to a knee specialist then too. I get the feeling they think I'm worrying too much, but they didn’t find my hip until it was end stage (I was initially told I was too young for it to be a hip problem) so Im (perhaps unfairly) suspicious of medical interventions and diagnoses. I have a very good physio who is helping me strengthen the knee as well as the recovering hip, and he’s confident that we might be able to keep whatever damage there pretty static, especially as I’m only worried about a noise. Still, it frightens me and hasn’t felt ‘normal’ for ages. It’s probably worth mentioning I’m in private healthcare as I waited for ages for a NHS op and couldn’t get one, so I can insist more on appointments/scans as I’m paying for them (through gritted teeth!)

Perhaps my biggest issue is that I’m very depressed about this all and struggling to come to terms with the replacement, and also terrified/anxious about the possibility of needing knee treatment/replacement/being diagnosed with OA there too (due to the dysplasia in my hip, the progression was incredibly rapid and painful and that’s my only experience of an arthritic condition).

I’d love to chat on here to people who have developed skills to deal with having arthritis, both mentally and physically. I’ve really struggled, having previously been very active and then spending years on crutches trying to get a diagnosis. I feel like I’ve lost a lot of myself and I’m so anxious about the future and what I may have to deal with next if my knee has OA too. I’m also upset as I feel ‘walking wonky’ for so long has caused the knee damage, so I suppose I’m blaming myself a bit for that (I don’t know why).

Apologies for the long ramble!

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