Hi All - If I was a horse they'd have shot me by now !

Toffee1970

Hello All,
I am a 45 year old fat fed up female with OA.

Five years ago I was referred due to hip pain.
Dad has had 3 hips his Mum and Dad were immobilised for the same but pre hip treatment.
Mum had both hips done. Several family members with the same. Family HIP joke as you can imagine.
Well they dragged their heels with a confirmed diagnosis of my pain as my mobility got worse, at this point I am 40 and as they constantly said 'too young for hip replacement'.
Backwards and forwards for between physio (private) , orthopeadics and GP over the next year or so. Getting progressively worse. Pain increase and less and less mobility.
Throw into this a stomach issue due to NSAIDs - so no longer allowed them
Oh and how about incomtinece and constant UTi's ......go me !!!
All this with a home (3 teenagers and hubby) and a full time job.

GP had some time off maternity leave and when she returned was horrified to see I had not had an X-ray for 2 years. So this is now 2 and half since I first under hospital.
The results showed severe OA in both hips, by this time I'm on one stick ALL the time. She tried to refer me to another hospital, but it didn't work I ended up back at the same consultant as they all work with each other.
So by this time, I am unable to do any of the exercise I used to do, and once I have got through a day at work I am in no state to do anything so the weight piles on.

I now find myself in the situation where I am on 2 stick and can manage about 10 metres before I collapse and have to use a wheel chair to do anything. Constant pain , I can only sleep properly if I have had oramorph which I limit as I know i will end up addicted. I am sustained by pain killers, then laxatives and as they make me constipated. Proton blockers for stomach and Vit B12 tablets. Tablets for incontinence but still keeping Tena in business !
With NO replacement in sight because I'm too fat !! I have managed to go from too young to too fat.
Solution ? A gastric bypass !
All of this makes no sense to me at all - if they had just fixed me right back when I wasn't TOO fat they would have saved the NHS a fortune. I have been told by many Doctors my family history meant it was likely to happen to me. But sadly these are the nice ones that don't make the decisions as opposed to the horrid ones that make you feel to blame and let you sit in their room crying and feeling suicidal.

Still only got low rate care and nothing for mobility on my claim for PIP a year ago.
Any help advice with regards pain management or how to force them to fix my hips please let me know
As my mobility has got worse in the last year should I reapply for PIP ?
I am still working but it's a struggle and very draining. I'm lucky I park very close to where I work and limit walking as much as possible but mentally everything is a lot to cope with.

Sorry about the long winded rant - I feel a bit better now

[Deleted User]

Welcome to the forum Toffee1970, I am sure you will find support, advice and light relief.

I am one of the moderation team, we all have one or more arthritis conditions or look after family with the same. If you need help with the technicalities of the forum just get in touch via a personal message.

Best wishes
Mod B

stickywicket

Hello and welcome from me, too

There does sound to be a family – or actually, both families – hip problem but, as people are living longer they do tend to need more repair jobs. There is some indication that there might be a genetic factor in some sorts of OA but I think it's all got a bit of a question mark about it still.

There is a problem with replacement joints. (I've had RA for 50+ years so two hips and three knees) and that is that they wear out. Revision operations constitute a much bigger op than initial replacements and carry more ongoing risks. And, unfortunately, those with weight issues put more strain on the replacement joints so they don't last as long for them. I was warned before my knee revision op that, if it all went pear-shaped I could end up with an amputation. Thank God it didn't but I still exercise daily to keep all my joints in as good working order as possible. (Can't do crutches because of the RA in shoulders and hands.)

How do you feel about the gastric bypass surgery? You don't sound too happy about it but might it mean you could then have a THR? I know someone who had it – a lovely lady with a teenaged son with learning difficulties – and she has never looked back. I didn't recognise her when I first saw her after her op.

It's very good, and to your credit, that you still manage to work but, if that leaves you too exhausted to exercise, it will be making your joints worse and more painful. I understand the 'no NSAIDS' thing as they did for my stomach many years ago before stomach protecting meds were offered with them. Arthritis Care have a good section on pain management https://www.arthritiscare.org.uk/managing-arthritis including their chair-based exercises DVD. Exercises really do reduce pain so are worth persevering with.

I see no reason why you shouldn't re-apply for PIP. It seems common practice to refuse it first time round. We also tend to recommend that people get help with filling it in eg from CAB. Good luck with it all

dreamdaisy

Hello, I was refused new knees due to extreme youth (aged 52) and being overweight. I am now heading towards 57, and lost some of the weight, but have decided not to have them done because I won't gain much benefit; during the intervening years my ankles have gone and my hips are joining in. I've been using two crutches for years (since a synovectomy in 2002) and have invested in other aids since: love my seated rollator because it offers better support, I can walk more upright with it and can sit down for a rest (I can queue in shops again, hurrah!) I have a wheelchair but that's for holidays / days out where I may need to walk much further than I can manage - it also gives the Spouse a useful aerobic workout.

I admire you for carrying on with work, it is important for our self-esteem and morale for as long as we can manage to do it. Losing weight is a challenge, we had a wheelchair-bound member who lost over five stones and like me she had a creaky foot in both camps (an auto-immune plus OA) and numerous affected joints including wrists, toes and fingers. It's finding the resources and the resolve to rise to the challenge and to keep going which tends to defeat us, yes? We have members on here who are doing either WW or SW, I preferred to do it the old fashioned way in eating more of the better things, less of the naughty stuff and moving around more to help burn things off but the occasional treat is allowed otherwise what's the point?

Living with ongoing pain is far from pleasant and, at first, frightening. I'm nineteen years in and can no longer remember being pain-free which has made life a deal easier. I did the trammy/oromorph route but now I stick to 30/50 cocodamol (usually four per day) and ensure I drink plenty of water and eat helpful foods to keep things 'moving'. I find that they take off sufficient an edge to allow me to get on with life as best I can and I can feel when it's time to stop for a rest. It takes time to develop our individual coping strategies, I'm still adjusting and making changes as my situation alters (usually for the worst ). My GP deals with my OA, my rheumatologist the PsA and they each ignore each other while I still do my post-op exercises to keep my muscles as strong and flexible as possible so they better support my rubbish joints. It's not easy but has to be done. DD

barbara12

Hello Toffee1970
I really do feel for you, we have had so many people deemed to young to have a THR or TKR..in my eyes pain is pain
I had my first THR over 2 years ago now and while I was in hospital they were replacing a young lady's hips..one at a time that is, she was in her 40s
I am alot older at 65 but understand the weight issues after being active..Im not sure were you live but if its anywhere near the North west, you could contact the hospital I went to..Wrightington...its an hospital of excellence in joint replacement..and I do know that some people contact them direct..
I do hope you can get some help very soon...