Just joining you

Lilymary

Hello, Here's me: I'm 60 and just diagnosed with OA, so feeling a bit shell shocked.

Looking at my xrays I've had this coming for years, but as it's only just started hurting, I guess I should count myself lucky. It runs in the family (my sister has 2 new knees, operations on her shoulders and now has polymyalgia rheumatica, and my Granny was really crippled with RA for the last years of her life in the days when there were no treatments on offer). I've had rheumatism since I was tiny - I just thought everyone's joints ached when it was cold. I was 12 when I found out it wasn't normal.

I've been a keen fell walker and trekker all my life (even if I was always the one lagging at the back of the group), but I'd started finding my knees giving me gyp, and my left hip would feel sore after a long day. Recently I've had random pains down my left leg, a slight limp and reduced mobility in my hip. My physio gave me some exercises to do, but it wasn't bad enough to xray.

Then I tripped over about 6 weeks ago and landed on my bum. It really didn't hurt at the time, just a few scrapes on my hands, but 3 days later my left leg, then my hip, started hurting more and more, and I had pretty much zero rotation. The doc prescribed a raft of pills and sent me for an xray, which showed my right hip was bad, but my left hip was really awful. (Right hip has never hurt). It's been a rapid ride downhill ever since then. Now it's agony, it keeps me awake at night, I'm never without pain despite pills, and can't walk anywhere without limping badly and wincing a lot. Even walking round a supermarket is a struggle. Tbh it's coincided well with the lockdown cos I couldn't work anyway it's so bad. (I'm self employed, and have a very physical job.)

The pain got so much worse in the 4 weeks since xray that my MSK doc sent me for another one, but it's showed no change, just that I've been overdoing it. So that's been a steep learning curve.

I'm particularly hacked off because I've just recovered from 3 years of ME, which severely restricted what I could do (that's another story), but now I find I STILL can't go out on the fells, or even for a walk round a field, even though I now finally have the energy, because of my wretched hip. Hoping for a cortisone injection to tide me over before hip replacement, but not sure given what the NHS is having to cope with right now, or how long is the wait for a new hip. By the time I'm up and running again, I'll be too bloomin old to go out on the hills. My mother is 91 and while she has awful balance issues and muscle weakness, so needs walkers/wheelchairs to help her about, she's still got better legs than both her daughters.

I've read some posts from others in this group, and my problems are so lightweight compared to many of you, so you have all my sympathy and admiration for what you have to endure. I'm still coming to terms with this - by comparison I've been so lucky up to now, and at least I can say I had great fun while I wrecked my body. I just hope that time will come when I can be well enough to risk wrecking the rest of it. I suspect if they xrayed my knees they'd find a whole load more horror stories, but they're holding up for now.

Personal stuff? Not much to know but I'm self-employed, married, no kids and love my two cats, my garden and Nature - that's me in a nutshell. I know there's a wealth of info and experience on this site. I'm so glad I found you.

Brynmor

Hi Lilymary and welcome to the online Community, its lovely that you have found us 😃

I'm so sorry to hear you are in pain from osteoarthritis in your hips. It can be very debilitating and exhausting having to cope with it constantly. We do understand and if you need to unload on the day's difficulties, then you won't be alone.

We have a great website with information that might be helpful for you. Here is a page on Osteoarthritis (OA) of the hip which might be a good starting point. It has information on exercises and managing the problem, plus a link to information on hip replacement surgery:

https://www.versusarthritis.org/about-arthritis/treatments/surgery/hip-replacement-surgery/

If you need to talk to someone in confidence, you can call our free Helpline on 0800 5200 520, or email helpline@versusarthritis.org (Mon - Fri 9:00am – 8:00pm).

Do join in across the forum and ask any questions you may have.

All best wishes

Brynmor

Lilymary

Thanks so much, it’s all come as an awful shock, I’m still taking it in. But I’ll have a look at the links you’ve suggested. Does this leave people exhausted? I slept for over 16 hours the other day, which I didn’t do even when I had ME.

dreamdaisy

Hello, I recall my shock when my OA was diagnosed back in 2011 (when I was 52) because it came on top of my other auto-immune arthritis which had started back in 1997. I thought you either had one or the other so to discover one could do both was a setback. I got my first rollator when I was in my mid-forties and I am so thankful I did because things are better now than they could be. In pain 24/7 yes, unable to sleep well because of it yes, cannot walk without pain yes, but I am still very mobile, still reasonably and sensibly active because I have to look after the rest of this rancid body. I do not dwell on what has passed, it does me no good and gets me nowhere, it is what it is and it will do what it will do no matter what. It is a case of mind over matter: we might mind, that doesn't matter.

Of the two I prefer the OA because it is predictable, I know when it will be aggravated and can take steps against that causing more trouble than it could. Yes, I can no longer dance, cycle, play tennis and stuff but I can still lurch about, at a reasonably steady pace. The rollator helps me do more, go further - I discovered I could queue again so no more leaving a shop without what I wanted because I couldn't stand! I am sick and tired of people telling me that their elderly mothers either have one or refuse to use one, to be frank I couldn't care less about that. I use one because it helps and I need it. James is my Rolls Royce rollator, he takes me to festivals (he's a sports Veloped, built for cross-country even if I am not).

My OA doesn't leave me exhausted but my auto-immune does. I began 2020 by spending nine weeks in bed, sleeping for England, because my psoriatic arthritis was flaring. Any inflammation that arrives with the OA because I've overdone stuff is localised to specific joints and goes with rest. Any inflammation that comes with active PsA affects the whole body and doesn't go with rest. Have you been tested for an auto-immune arthritis? I think I am right in saying that it has been thought that ME has an auto-immune aspect. DD

frogmorton

Hello Lilymary

Lovely to meet you and gosh i do not think your problems are lightweight at all and seriously bad-timing with thsi COVID going on and little chance of getting things sorted in the short to even medium term.

No-one should beat themselves up for walking and think they have wrecked their own body. It's just some genetics (in your case from what you say) and bad luck. Drs would probably be far happier with us moving too much than not enough!

I have one cat a HUGE garden (luckily a automower) and a husband too. I hope your business isn't suffering too much during this crisis ours is doing ok..ish! about 50-60% down so not too bad.

Please do come along in and join us all we are a nice bunch of people who understand each other 😊

Take care and yes pain is exhausting!

Lilymary

Hi Dreamdaisy and Toni, thanks so much for your replies. I had ‘t realised the doc could test me for auto-immune arthritis. I might look into that. I’m pretty much convinced that going on anti-inflammatories for my OA is what sorted the ME. It came on very suddenly after a severe bout of colic (I’ve since found I’ve got gallstones) after a very hectic few weeks, and was diagnosed as ME bout a year later. But it went just assuddenly about 3 days after starting on Naproxen. I’m still a bit tired, but it feels a very different type of tired and for the first time in years I feel I could go back out on the fells again, but now my hip is anchoring me to the house!

Dreamdaisy, you mentioned that your OA would settle down if you rested it. How long does that usually take, and what is your definition of “rest”? Would it mean me staying in the house avoiding working my joints at all, or would it be ok to gently potter in the garden or walk into the village for the papers etc? I’d love to believe I can reduce this pain, and this isn’t “it” until I get a new hip 🙁

Good to hear your business is still afloat Toni, mine has ground to a halt for the duration, but OA permitting, it should pick up again when the economy comes back to life again, in whatever form that takes. In some ways this has been a good time for the OA to show itself, as I wouldn’t be able to work in this state anyway, so if there’s anything I can do to put myself in better shape for the Grand World Reopening, now is the time to do it.

Lilymary

https://community.versusarthritis.org/discussion/comment/666576#Comment_666576

At least I had fun while I wrecked my body

dreamdaisy

I have never really timed anything I do, this has been going dor so long it is now just a way of life, my way of living. I know it isn't a case of a ten-minute sit down then I am back up, faultily firing on what cylinders remain, it is much more do a little, rest for twice as long, then do a little more, this stops the OA being aggravated but, when I have been really stupid and got completely absorbed in what I am doing then it takes days for stuff to ease. This is happening at the moment, I am spending far too long sitting at the dining room table making greetings cards and I am in real trouble knee, hip and wrists-wise due to OA and knees and fingers due to the PsA. Serves me right for enjoying myself and not following my own simple rule. 😁

A GP can do blood tests for an auto-immune arthritis but may not be knowledgeable enough to interpret them. Given your family history - was it all OA or was rheumatoid (for example) involved? - I would hope he would refer you to rheumatology anyway. GPs know a little about a lot, my gut feeling is you need a rheumatologist who knows a lot about a little. DD

Lilymary

Thanks Dreamdaisy. My grandmother had RA really badly, knees, hips and hands. My ME was mercifully nor accompanied by any pain, just bone deep exhaustion. My sister has OA, (both knees replaced) and now polymyalgia rheumatica, treated with steroids. I think I’ll raise it with my GP though.

This “flare up”, or more properly, emergence with all guns blazing, has lasted over six weeks now and is getting progressively worse at an alarming rate. I’ll admit I didn’t realise what it was for the first few weeks of moderate pain before the X-ray, but as the AIs had relieved my fatigue so dramatically I overdid things by miles (literally). But since then, other than a bit of light gardening and a short trip round a supermarket, I have done very little but it doesn’t seem to be easing. I do hope this isn’t going to be “it” until I get a new hip. Do flare ups last this long? Or. Am I doing something wrong?

dreamdaisy

As far as I am concerned only one of my arthritises flares and that is the PsA. Despite taking the meds my immune system does, occasionally, decide to fight back and that is me wiped out for weeks. My OA does not flare, it merely worsens then returns to its usual level of dross within hours. The OA is predictable, cold and damp weather aggravates it (not under my control) as does eating too much acidic food (which is). I aggravate it by overdoing things so that is also under my control.

I spent January and February in bed due to the PsA having a go, managed a week away at the beginning of March then have been shielding ever since. Some year this is turning out to be. 🤔 DD