Not always Polymyalgia!

[Thelmarina]

I am lucky with my rheumatologist. At a recent appointment I mentioned that turning my head from side to side was painful. She set me up for an immediate neck x-ray, saying that if the stiffness was due to another cause it would give me confidence to continue reducing the steroids - I’m currently on 7.5mgs and have been with PMR for over six years. Sure enough it’s moderate to severe osteoarthritis in the cervical spine. So onwards and upwards as I work on that and continue reduction. Just thought this might be helpful to others as we battle on! 😀

[123-go]

Well done to your rheumy! Best wishes for a successful journey to PMR remission.💐

[Thelmarina in reply to 123-go]

Thanks! X

[PMRpro Ambassador]

And if you had mentioned it to a GP they'd probably have found any reason not to send you for an x-ray!!!!

[Longtimer in reply to PMRpro]

I agree that’s why I am grateful to Max for sending me in two weeks for an X-ray!….two months minimum with GP!

[Stills in reply to Longtimer]

My GP thinks x-ray is a fish dish for the over 18s 😜

[Longtimer in reply to Stills]

Sounds about right!

[Thelmarina in reply to Stills]

😂😂😂

[Knip in reply to PMRpro]

Sadly, that seems to be the case these days, PMRpro!

[Mfaepink1973 in reply to PMRpro]

I’m very lucky with my GP surgery. I live in a rural area and they give you a card to take to any of the 3 nearest hospitals which all have walk in X-ray departments

[SheffieldJane]

It does clear the muddy waters for dosing. I have Cervical Spondylosis that gives me neck pain and stiffness. Confusingly extra Pred can feel helpful, but I’ll never get off it at this rate.

[Longtimer in reply to SheffieldJane]

The lesser of the two evils. I don’t think of getting off it, would stay at 3 mg if QOL was ok. Long way to go as yet!

[SheffieldJane in reply to Longtimer]

Me too. Quality of life matters. How are you?

[Longtimer in reply to SheffieldJane]

This week have been able to leave the house a couple of times with OH for a coffee yay! Saw Max Yates on Monday so got a bit of a lift. Have had big stress fiom gas workers in the road, redoing gas pipes, couldn’t find where our gas was coming from?? Dug and dug garden, no luck so put a “worm” down to look for pipe….lost the worm!! Had to get a digger, very clumsy worker ripped up garden, awful, one was alcoholic! Rolled his van…..I could go on! They are self employed from the gas company, worrying. We don’t need it! Sorry for the ramble. Hope you enjoyed your break away.

[SheffieldJane in reply to Longtimer]

Not a ramble at all. Good grief, what a nightmare and you are still standing. Glad you had some cheery moments - they really help.

Our anniversary was lovely - a beautiful meal in a restaurant in London with famous actors dining - Derek Jacobi for one. A moving play “ Hamnet” that made me cry.

It did however, take me days to recover and I seem to get a heavy cold whenever I go out, but it was worth it.

[Longtimer in reply to SheffieldJane]

Lovely dining with actors wow.

[SheffieldJane in reply to Longtimer]

No I just saw him sweep in darlings! 😉

[Longtimer in reply to SheffieldJane]

😂

[SheffieldJane in reply to Longtimer]

Just a thought, you may be able to claim compensation for the gas fiasco. I claimed for tripping over on a roughened road surface once as an out of court settlement. I got £200.00. Yours was far worse. What about a newly landscaped garden? X

[Longtimer in reply to SheffieldJane]

We have been onto them all the time, taken photos ect. Yesterday, they sent two good gardeners after we told them exactly what we want done.......At the start OH told them where a water system was und er the ground....they ignored him!....so we are alert to what the rough damage the digger, or rather the driver did!OThanks for your advice, fingers crossed, we just d on't need this stress.......

Have a good weekend...x

[SheffieldJane in reply to Longtimer]

You too! X

[granofthewest in reply to SheffieldJane]

My recent claim to the council for injuries from fall caused by loose paving has been rejected. Explained PMR makes walking more difficult on uneven ground but still said no. Probably because of the £100m deficit in the council budget!

[SheffieldJane in reply to granofthewest]

Small claims court? They may settle.

[Polygolfer]

Great point!!!

[CavalierKC3]

What do you do for osteoarthritis, please

[Gimme in reply to CavalierKC3]

Depends where the OA is. Very simplistically, lose weight if you need to, physio to correct any postural issues that are putting extra pressure on the affected joints, look at lifestyle factors that might be irritating the affects joints (e.g. driving position, hobby activities etc), chat with GP about appropriate medication for pain and inflammation in the joints, and most important of all, keep moving to keep the bearing surfaces of joints free and to keep the supporting muscles in tip top condition. Some people find that pilates is helpful as it strengthens the core and the tiny muscles that support the joints. I would say that the GP would be first stop, but you may need to fund your own physio.

[Gimme]

I'm in a similar situation, pretty sure that most of my neck issues aren't the PMR now. No x ray, but have been told enough times by osteos and physios that I have OA in the cervical area, and in any case, I an hear the joints creaking when I move my head. A 3 week holiday from the computer and my neck is enormously improved. First step now that I am back is to get a new computer chair.

[Viv54]

I have the same problem, it really hurts , its hard to know sometimes what bits of your body has what ! Great to have a good rheumy , mine would not even bother to check !

[GrandmaPirate]

Indeed, it is useful to mention that other causes can exist besides PMR. A couple of months ago I suddenly had severe lower back pain. I feared for a flare, but my rheumy, who saw me before normal appointments started at the hospital, told me it was a lumbago and I could just stay on my pred.1mg/day. She prescribed me a gel to apply locally and within a week it was gone.

[Longtimer in reply to GrandmaPirate]

That’s interesting what was the magic gel??

[GrandmaPirate in reply to Longtimer]

It's Fastum(ketprofen). You can not expose your skin to sunlight during and after stopping for 2 weeks an you have to wash your hands carefully after applying, BUT it helped !

[Longtimer in reply to GrandmaPirate]

Thank you, so long as it works!

[Telian]

Similar happened to me. I was still with Professor Dasgupta at the time and he did an ultrasound across my shoulders which showed Osteoarthritis.

[BadDancer]

Snap! I posted a while back about pains in my thighs on walking. When I saw my excellent rheumatologist he said it didn’t sound like PMR and sent me for a Doppler ultrasound ( to check for claudication) and MRI of hips and lower back. Turns out I have severe degeneration, bulging discs, impingement of the nerves, stenosis etc of the spine and also severe degeneration of one hip. Think PMR would have been better! We’re trying ‘conservative management’ before deciding whether I need to see a spine / hip surgeon. Not a great Christmas present …

[Thelmarina in reply to BadDancer]

I’m so sorry to hear this pile of symptoms - it must have come as such a shock! Amazing you were just feeling your thighs hurt. However, at least you will be able to get help for some of this which will hopefully ease your symptoms and stop them from getting worse. Do let us know how it works out. I will be thinking of you ❤️

[Karendeena]

I am in the same position. Dreadfully painful neck and into shoulder. Having physio, got spondylosis of the cervical spine. On .5mg of prednisolone, don't think it's doing much but afraid to stop taking it completely.

[BadDancer]

Thanks so much Thelmarina for your encouragement and kind words. It was a huge shock. Let’s hope we both get some relief. Seeing the physio this week and will hopefully be able to do exercises and some other physical activities (swimming, Pilates…) which will help and will just have to cut down on the walking. Sadly walking is my favourite activity - after dancing which was abandoned since PMR. But reading the posts on here I realise I’m lucky compared to so many others and there’s still a great deal in life to enjoy.

[Thelmarina]

👍❤️

[JudithWarrior]

Thank you for this. Wow what an amazing rheumy you have. I've not been so lucky on that front. But good to hear that there are some good rheumys out there!