26 and living with OA in hip

Daisyjune

Hi!

I'm 26 and found out 2 years ago that the pain/lack of mobility in my right hip was due to OA because of damaged bone.

I'm a very active person, climbing mountains, going to the gym and doing different sports with my friends is my entire life, so I'm not coping with the fact that I'm continually losing the ability to do what I love. The doctors just tell me to 'do less' and 'accept and adapt' my life. But to me that just isn't an option. I've had a couple of steroid injections but the second one has only lasted about a month before the pain is coming back and I already feel like I'm out of options as its 'not bad enough' yet for the consultant to consider surgery.

I'm scared of losing my 20s/30s to constant pain. I want to travel but I don't know whether I'll even be able to walk very far in a few months or years as its just so unpredictable. It just feels like I've constantly got a huge weight pressing me down and I'm struggling with the depression and anxiety of trying to live with this.

I watch my 'normal' friends go about their lives and just get so sad and jealous that they can do whatever they want and I can't.

Has anyone had experience of having surgery this young? Is it worth trying to push for it or is life after a hip replacement going to be worse?

Thanks! x

YvonneH

Hi @Daisyjune

How lovely to meet you, it's great that you have found us. Since Lockdown we have seen our younger adult members increase but still it isn't a huge number. I'm also sorry we don't have anything specific for those too old for young persons services but still very young.

You might like to have a look at this site, it has been going for years now and is specifically for young adults,

https://arthursplace.co.uk/?msclkid=6907e716d06511ec903236a8eea76912

Volunteers from Versus Arthritis run this online social chat group. You have to book a ticket but it's free and then just join on the day for a virtual cuppa and a chat

https://www.eventbrite.co.uk/e/too-young-for-arthritis-tickets-259468395957

I do hope these give you somewhere to ask your questions and get help from others in your age bracket.

Keep posting here as well, we have loads of experience of living with arthritis and can help find solutions to any problem and we are really good at listening too!

Take care

Yvonne

HipHipReplacement

Hey there,

I believe I can offer my thoughts from a similar position.

Basically I had bilateral AVN at around 16, which after the bone matured turned into osteoarthritis in my late teens. Like you I was incredibly active, playing a number of sports. Even at 18/19 one of my cricket team mates noted I ran like an old man between the wickets if I'd been bowling first. (He didn't know I had OA, and it was funny anyway)

Other than that I put off my replacement for over a decade whilst I still played football, pretty much loading up on painkillers before the same and then literally crawling to my bedroom that night, and suffering for the days following. That was until I was about 32 and the hips (especially the right) completely seized up. It took a lot to admit defeat because football/sport is my life, and knowing I couldn't play again after my operation was truly brutal. People said they understood, but they didn't. No one really got how big it was. Then of course you'd have the people that said "it's just football, it's not a big deal", those people were very frustrating. Nothing like a fully able person dismissing your turmoil.

So after finally giving in because my right hip completely collapsed and I was mostly in a wheelchair, my surgery got delayed another 18 months due to COVID. Not too much fun.

Now for the operation. My muscles had atrophied horribly. The rehab is long if you leave it as long as I did. I'm one year to the day I got my first bit of metal and there's still a way to go. Sadly I'm hindered by the fact my left hip is rotten and needs the chop too, not much rotation or bend in it at all. So a ton of rehab on the right and prehab on the left currently. That said, I've been going nuts at the gym, which is wild to think 14 months ago I was stuck in a wheelchair unable to move. It's definitely helped my mental health too being able to get back to sport. I did also play a game of football for my old yeah (not that I'm supposed to) and it was amazing, especially managing to score one with my bone leg and I've with my metal one. Was grinning for days!

I don't really see any reason why you can't still climb, or do non contact sports. The gym you will have no issue with at all. The only problems I have stem from my bone hip that causes me a lot of pain and won't bend much. I go five days a week for 2-3 hours a time, and besides muscle fatigue I do not experience issues.

Of course it all depends on your pain levels and mobility but I think I was offered my hip replacement around 25 which would have saved a bunch of issues. Just make sure you don't let it progress as much as I did, the quality of life is not good and the fifteen years of strong painkillers every day definitely caused me a lot of problems too.

I rambled a bunch here trying to be thorough, and still probably missed a lot, but if you have any questions I can answer whatever. You're definitely not alone.

frogmorton

My daughter also had AVN at 18 (due to chemo and dexamethasone) she had it in one hip and the opposite shoulder (not so comfy in bed) she had core decompression in her hip (at 18.5) which has bought time, but the shoulder was replaced (at 19) and YES we had to push for it. She limps a bit, but has minimal pain and her shoulder she has full range of movement.

The shoulder is a big potential issue for her longer term future as revisions are not so easy and will be less successful over the years, but she had no life now at 24 she is very active doing anything she wants pretty much😊

Best of luck both @HipHipReplacement and @Daisyjune

Toni x

Molly_Elizabeth

Hi!

I can’t give any advise on the surgery as I have not had any, but I am also I’m my 20s (22) and have found it really difficult adapting to my new life. I was 20 when I was diagnosed and half way through my nursing degree. I managed to finish the degree with great difficulty however since finishing it I have not been able to start my career as a nurse due to how active my RA is at the moment. And I can really relate to seeing all of your friends achieve great things while your just stuck in a rut! If you ever want to chat and rant about how frustrating it is being young and having arthritis give me a message! I always rant to me partner and dad but they don’t fully understand how hard life is being this young and so limited to what you can do.