have I got PMR or not: it’s me again. Had my appt... - PMRGCAuk

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have I got PMR or not

CavalierKC3 profile image
9 Replies

it’s me again. Had my appt. With Dr Mutkhyr yesterday as his nurse wanted, but of course I knew it would be pointless. Although I have this terrible pain & stiffness in left knee, thigh, hip & across lower back it is NOT PMR because I can lift my arms above my head. I get this every morning once I step out of bed, it will tend to wear off as day goes by. Because I was told by gp I have mild degenerative changes, Muktyar says I have osteoarthritis.Have any of you people got this, if so do my symptoms point in that direction

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CavalierKC3 profile image
CavalierKC3
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

It may be OA (and joints seize up overnight but ease off a bit during the day) rather than PMR -so an X-ray might be useful - was that suggested?

If not, then request one. But keep an open mind 😊

CavalierKC3 profile image
CavalierKC3 in reply to DorsetLady

I had X-rays in June, both knees & hips. The result was as I have said, mild degenerative changes. Seen physio, given 1or 2 exercises but don’t seem to help much.are there any blood tests to determine PMR, osteoarthritis etc. what is normal treatment. I had this awful pain at same time as giagnosed with GCA in aug 22. Put on 50 mg of Prednisolone now down to 5

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to CavalierKC3

Not specific to PMR -only general inflammatory ones -CRP & ESR -but they just show inflammation in body not what from. So based on symptoms and ruling out other illnesses.

The fact that yours is mainly one-sided throws a spanner in the works for some people…

Any chance of GP referral to pain clinic -although waiting lists seem to be much like those for any department.

Is the physiotherapist part of the muscular skeletal team at local hospital? That might be an option if not.

Maybe look st versusarthritis site if not already -

versusarthritis.org

CavalierKC3 profile image
CavalierKC3 in reply to DorsetLady

The physiotherapist is one who works at our gp practice. He seemed to think it was more PMR than anything else. What do most people do for OA. Is it mild painkillers & exercises from physio, that’s what my gp said

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to CavalierKC3

Really depends how bad it is -at the beginning if only mild, painkiller, exercise and flexiseq helps -see link -

flexiseq.com

If you look at versusarthritis they have plenty of exercises and advice, which is why I linked it previously.

As it gets worse you should be referred to muscular skeletal clinic at local hospital-if they have one.

Last option is replacement surgery -been there, done it, got the tshirt.

CavalierKC3 profile image
CavalierKC3 in reply to DorsetLady

May I ask have you used flexiSEQ. If yes, did it work

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to CavalierKC3

Still using it regularly on shoulder which hasn’t been replaced… and fingers crossed it doesn't seem to have deteriorated at all .Whether that’s down to Flexiseq or luck I’m not sure.

But I will say prior to my knee replacement in 2018 where it had got to bone on bone it didn’t work - it’s needs some cartilage and synovial fluid in the joint to actually work on.

It was only introduced in 2011 when my osteoarthritis was very mild… so didn't use, not sure I was aware of it tbh. Then 4 years of Pred [GCA] when pain was masked - so only found it in 2017 or thereabouts when knee was probably too far gone for it to help…. as was hip and other shoulder.

From my experience, I would say the sooner you can start using it the better the outcome.

PMRpro profile image
PMRproAmbassador

I would suspect a combination of degenerative changes and greater trochanteric pain syndrome. I have something very similar and it isn't directly PMR - I'm on tocilizumab. I have sacroiliac joint inflammation which the GTPS aggravates by tightening the joint so it becomes more inflamed with movement. It happens with PMR/GCA but it can also happen in its own right, I have had problems for years, long before PMR. I can control the pain with a relatively low dose of ibuprofen but the Pain Clinic is very unhappy at me using it ongoing because of the long term adverse effects on heart and kidneys. Steroid injections would also achieve a lot for me - not allowed because I am on anticoagulant therapy.

For me, the first thing to do is get the spasmed muscles sorted out - even just that can be excruciating. There are various ways of doing that - therapeutic massage is great I find, the other things I get here probably aren't easy to come by in the UK, A good Bowen therapist is an option or a good osteopath.

I recently decided to take the plunge and went to a chiropractor - have you seen "Crack Addicts" currently on free-to-air TV? Not sure which channel offhand though. He used similar techniques to what you see there and the low back pain has changed, the SI joint pain is much better, But one thing he said has really made a difference - he sleeps with 6 pillows!! I am currently using 3, one of which is between my knees. I take paracetamol before bed and when I sleep well and stay on my left side - no morning back pain. Lying in bed to read, propped up on pillows is poison. My problem had been that it improves through the day with movement - but I was in too much pain to go and walk to achieve that. It was like knives into my low back with every step. Aquafit is brilliant and does make a difference - I used to do it daily in the UK, only once a week here.

The fact it is predominantly one-sided will not wash with a lot of rheumies, especially him. Mine appreciates the PMR makes it worse and does try to help. It is complex and does require a lot of work to find what works for you - and alternative therapies are probably more use than mainstream medicine.

Longtimer profile image
Longtimer

Sorry, I'm so dopey today.........this was meant for PMRpro!.....

I'm desperate to have my xray next week, in so much pain with shoulder and upper right arm.......typing this is agony, tip of elbow has burning pain too.....I take two paracetamol before bed, but wake every two hours.....mt biggest problem is getting in and out of bed.....I have to push on right arm to get out! I two put small pillow between knees, but because of shoulder I have a very flat pillow......bravo to 6 pillows!...think I may try taking Ibuprofen on odd nights just to get some sleep. Still waitng to hear from pain clunic.......all over nerve pain from Fibro and this has got to me now.......You are brave watching Crack Addicts!

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