Could this be PMR?

[Claribel55]

Hi there. I have been lurking in the background for a while. I have OA and in fact had both hips replaced-2014 and 2021 to great effect!! However for the past 2 years or so I have had various rounds of physio to try and resolve a stiff neck and sciatic pain. No real relief and Ibruprofen doesn’t help either. In the end at the start of 2023 I paid for a private rheumatology appt and they did an MRI. He also tested for AS which was negative. The MRI showed bulging discs- one in my neck and a more severe one at L4/5. His view as my blood tests were negative was that the pain in my leg was related to that and the tingling/burning/pain in my neck was also linked to the disc so he recommended more physio. This helped a bit but since the end of 2023 there has been a marked increase in pain- TBH this is at its worst first thing in the morning. The arms and neck remain very tight and the “burning” in my arms is very uncomfortable. But the sciatica is excruciating. I am now getting it not just in my left leg but also a bit in my right and it takes me 2-2.5 hours before I can properly move around. The GP did more bloods- still “normal” so has referred me to NHS rheumatologist and the appt is for September. I did ask the GP if she could give me a try of pred despite the low markers but she said she was unhappy doing that without the usual raised bloods. Not sure I can manage as I am til September. I do exercises for the sciatica (later in the day when I can move!!) Is it worth pushing her at least for stronger painkillers for the leg pain to get me through to see if they help? I also often wake in the middle of the night these days boiling hot (not menopause as am on HRT for that!!) I am also much more tired generally than I used to be (although sleep at night OK- I wake when I turn over as stiff but do seem to get back to sleep thankfully.) Sorry for the ramble….😃

[PMRpro Ambassador]

Hmmm - tricky one. It MIGHT be but it really doesn't sound typical

My immediate thought is it sounds less like PMR itself than your back muscles being in something of a mess and tight/spasmed, possibly as a result of the way your walking will have changed after both hips being done. Keeping upright requires an amazingly complicated balancing act by your trunk muscles, especially back muscles, and altering anything can have a bad effect, even a trip that jerks them can cause havoc.

Have you got a really good osteopath or sports physio somewhere near you who could assess the state of your back muscles? In my experience, the NHS MSK system is pretty useless - one of their "specialist" physios informed me there was nothing wrong with my back since I could touch my toes and he couldn't! Even I can see the scoliosis on an x-ray and he obviously had never heard of the hypermobility that the rehab people here see at a glace! That was in the early stages of PMR with very similar problems to what you describe - which is why I say it is POSSIBLE you have PMR, but if it is, it is with add-ons.

[Claribel55 in reply to PMRpro]

Thanks so much for your reply which sounds logical!! I’ll do a bit of research locally about osteopaths/sports physio and give that a go!! TBH any relief at all would be fantastic- it’s already 11.30 and I’m only just getting going today!!😳

[PMRpro Ambassador in reply to Claribel55]

That does sound PMR-ish but I doubt many doctors would bite without bilateral everything and raised markers (which aren't conclusive anyway but they think they are)

I used to struggle out of bed and went straight to aquafit and after that I could move. Stretching in a hot shower helps a bit too - after switching the electric blanket on sometime before you are ready to get up.

[Claribel55 in reply to PMRpro]

Yes- a hot shower helps!! When we are at home if my husband can help me on with my socks and shoes (!) then a short session on our exercise bike also seems to loosen everything up (except the arms- where oddly the tingling seems to increase as the blood flow improves!!) I have found a local osteopath surgery that has 5* reviews so will see if they can fit me in!! Thanks again.😃

[PMRpro Ambassador in reply to Claribel55]

The other thing that helped most was a glass of wine with dinner. I never tried it with breakfast though

[Claribel55 in reply to PMRpro]

😂😂Now there’s a thought….

[sidra1968]

Just my story, but I demanded a trial of Pred after a year of physio for my neck after noticing I was always much better almost overnight after a Medrol (6 day) Packs. Then overnight hip pain and then barely being able to walk after a plane ride got me that last Medrol Pack at Urgent Care in Las Vegas. I felt 80 % better 13 hours later.

When I came back I demanded the Pred after googling and finding this site. I also had "normal" bloods. Kind of high, but not high enough to appease the GP at first, but he did relent when I politely refused to leave the office without the script to try. I was desperate. He was only truly convinced when my bloods went UP months later while on 30 mg a few months later.

Only one way to find out, in my opinion. Please keep us updated.

[Claribel55 in reply to sidra1968]

Thanks for your reply. And yes of course I’ll keep you updated.😃😃

[Bramble2000]

Hi, the way I describe my PMR is it’s like you’ve run 30 marathons back to back but never trained for it. If you’ve ever had a vaccination injection that made your arm really sore and difficult to move, it’s like that but way worse. It’s tricky to diagnose these things as they often mimic one another. Sciatica is horrendous though so you have my sympathy there! All the best to you.

[Claribel55 in reply to Bramble2000]

Thanks for your input. The burning in my arms can certainly be bad- but perhaps not quite that bad- poor you!! Hopefully pred keeps the worst of the pain at bay for you? I have an appointment with an osteopath for next week when we return from Northumberland so fingers crossed she can work her magic- at least with the sciatic pain- which really is a pain in the a**e!!😳😂😃

[Bramble2000 in reply to Claribel55]

Actually I don’t take the Pred because of the effects, I have Ankylosing Spondylitis too.

[Claribel55 in reply to Bramble2000]

Oh gosh- they did test for that last year but it came back negative. A friend of mine has AK which he takes meds for. Best wishes to you.😃

[Bramble2000 in reply to Claribel55]

How did the test for AS out of interest?

[Claribel55 in reply to Bramble2000]

I had an MRI and they did a blood test to look for the HLA-B27 gene.😃