What does PMR feel like for you?

[Curlacious]

Hello everyone, I have had two months of GCA-like symptoms (head pain, jaw pain, eye pain) but remain undiagnosed for now (clear bloods and ultrasounds and MRI).

However in the last few days this pain seems to have spread down into my neck (it FEELS like the carotid arteries are swollen and sore) and my shoulders which are relentlessly achey and exhausted and painful. My hip area hurts too, but less severely.

In the last 24 hours I feel systemically unwell, nauseous and flu-like but no fever.

Is this PMR-like?

I have read that PMR can be a 'morning thing' but this seems to be all the time.

I'd be interested in hearing about your experience with PMR, before you took medication.

Thanks!

[PMRpro Ambassador]

Sounds suspiciously like PMR -type symptoms. But could be symptoms of other things too.

I know - they go on about morning stiffness, but I have lost count of the number of patients who, like me, said it was all day stiffness and pain!! Needs a few more doctors to develop it!!!

[Curlacious in reply to PMRpro]

Yes, it certainly feels that way. I am rapidly accruing all the range of symptoms. Is it common to have systemic symptoms of exhaustion and fluey feelings?

[PMRpro Ambassador in reply to Curlacious]

Yes - though also more so in LVV or GCA,

[Curlacious in reply to PMRpro]

Interesting, thank you. This is getting extremely hard to live with, I'm hoping for a diagnosis soon.

[PMRpro Ambassador in reply to Curlacious]

We know - but sometimes it can take a long time when it doesn't fit with the image the doctor has of what it SHOULD look like!

[Curlacious in reply to PMRpro]

Agreed! I hope to have a PET scan this week and that might take me forward.

[Broseley in reply to PMRpro]

I agree. My GP was surprised when I said it was all day pain, only relieved slightly in the evenings by red wine!

[PMRpro Ambassador in reply to Broseley]

I found the best pain relief pre-pred was my evening wine with dinner - which in those days was usually but not always red!

[123-go]

Hi. I admire your stoicism and patience, Curlacious. Lack of diagnosis must be so frustrating. I’m probably way off the mark here and at risk of being shouted at but has fibromyalgia been mentioned?

[DorsetLady PMRGCAuk volunteer in reply to 123-go]

You’ll never be shouted at…and it’s a possibility of course 😊

[123-go in reply to DorsetLady]

I can take it…..I think 😉.

[Curlacious in reply to 123-go]

Thank you, that's very kind. I'm hiding a lot of distress (I cry regularly) and feel unsupported outside this space. I'm so grateful to have found everyone here. No one has suggest fibromyalgia, but I will look into it.

[123-go in reply to Curlacious]

Consider yourself hugged by all your friends here 👩‍❤️‍💋‍👨.

[RunnerJoe]

I had undiagnosed PMR for about 8 months before developing symptoms of GCA. Like you, I had stiffness all day, but especially after sitting for a while. When I was sitting it was hard to get back up. I had a lot of stiffness and pain in my shoulders. There was a couple of weeks where I physically could not sneeze, because the muscles in my shoulders along the top of my back were so tight. I had trouble dressing, mainly getting my arms into sleeves and also putting on socks and shoes, due to stiffness in my back and legs. I did run a low grade fever for a period of time. Also, I couldn't lift my arms above shoulder height - it was just too painful.

[Broseley in reply to RunnerJoe]

Gosh yes, I'd forgotten about the sneezing thing. It was so painful to sneeze, I had to push myself backwards into my chair, or bend double in advance, because the sudden jerky movement the sneeze caused was agonising.

[PRL1957]

Before I was given steroids, my PMR pains lasted all day. I also had periods of emotional distress, which I think can be part of PMR.

The suppression of my PMR symptoms after taking prednisolone (15mg) was remarkably fast - I felt much better within 3 hours. That can be regarded as support for the PMR diagnosis.

[Gimme]

Stiffness and pain on movement in the large muscles of my body that would last all day without pred. More stiff after rest which eases a little with movement. Morning stiffness on pred that eases after taking my morning dose. (Though I think that the morning stiffness idea might come from the fact that the inflammatory cytokines kick off in the early hours).

I have the classic signs when I move; difficulty in rising from a sitting position, more recently difficulty in raising my arms above my head or reaching behind me (don't mention fastening bra straps), the John Wayne waddle when I try to walk after being seated, and the toddler stomp down the stairs first thing in the morning.

It all started with increasing stiffness in my lower back/hip girdle area and thighs. Not being able to reach my feet or put socks and shoes on. My shoulder involvement has been less than most people until recently. I have had the kind of neck problems that you describe on and off and when I am flaring the large muscles down my back give me trouble. It is bilateral, but the rhs is always slightly worse and a flare always starts on that side for me. Maybe postural, I guess.

The clincher for me was the immediate and miraculous response to pred. Overnight, I went from moving like a 150 yr old to walking normally.

I've also experienced the flu like symptoms without fever periodically, just as you describe. Though I believe that I have had PMR symptoms on and off for over 20 years, undiagnosed and following an exacerbating/remitting pattern. The flu like stuff seems to precede an exacerbation. Though I have never had raised inflammatory markers throughout. Viral infections and stress seem to make it all kick off for me (anecdotally).

You mention the possibility of fibromyalgia. Remember that fibro is neurological and that PMR is autoimmune/inflammatory, so look for differences in how the pain presents. And it is possible to have both. There are people in this group who have both. Fibro doesn't respond to pred.

[Poetryb]

I am sorry you have no diagnosis. My worry is that you could potentially lose your sight if the temporal artery doesn't let enough oxygen into the system. I am not medical and don't want to be alarmist. Jaw cloudification is when you can't eat because you can't open your mouth wide enough. Other symptoms I had were tenderness of the scalp and ears. If you experience these you should in my opinion get yourself to hospital. I have recovered from GCA and no longer take steroids.

[PMRpro Ambassador in reply to Poetryb]

Claudication isn't due to not being able to open your mouth - it is the muscles becoming unable to function because of poor blood flow to the muscle when it is working.

[Poetryb in reply to PMRpro]

Yes, not being able to open the mouth is the result of insufficient oxygenated blood working the muscles, sorry I explained it badly.

[PMRpro Ambassador in reply to Poetryb]

Inability to open the mouth wide tends to be a joint problem, The claudication only appears while using the jaw and it gets tired and aches.

[DorsetLady PMRGCAuk volunteer in reply to Poetryb]

My worry is that you could potentially lose your sight if the temporal artery doesn't let enough oxygen into the system

For your info, it’s not the temporal artery that affects sight -it the ophthalmic artery that feeds the optic nerve . Albeit that they are both sub branches of the carotid artery.

My temporal artery was never affected by GCA, but my ophthalmic one most certainly was -hence sight loss.

The temporal artery is the one most talked about - that’s because it’s accessible to biopsy -the ophthalmic one is as it’s much deeper in head. (In picture you can see it’s much paler)

Head arteries

[Curlacious in reply to Poetryb]

Thank you, I have all these symptoms of GCA - jaw claudication, scalp pain, temporal headaches - had that for 2 months. But been to hospital twice and saw a few rheumatologists but they all said it's not GCA because my bloods and ultrasound scans are repeatedly normal. Plus I am 45, so they think I am too young. The PMR-type symptoms are new, started a few days ago. The pain is crippling.

[DorsetLady PMRGCAuk volunteer in reply to Curlacious]

Well it’s obviously something so they need to be deciding what it is rather than what it isn’t. Not good enough to leave you in pain..

[Poetryb]

I think Dorset Lady has made it all very clear now. I wish you all the best.

[BooAlan]

Hi I don't have any advice to give but wondered how you are feeling now? I suffer with PMR, on pred at the moment and know how painful and frustrating this journey is. I eventually saw a rheumatologist privately, I don't know if this is an option for you but in my opinion it was money well spent. They suddenly seem to listen to you when you are paying! I wish you the very best of luck.