Could this be PMR???

[Sofes]

Hi. I am just enquiring to see if I am barking up the right tree. I am 52, female and for the last 3 weeks have had terrible searing pain in my lower back, both hips and less so in both shoulders. I have had a 'bad back' (nurses back) for years on and off but nothing I can't cope with. The pain in my back, hips and knees in the morning is so severe I can hardly get out of bed and have to go down the stairs one at a time. I feel like 100!, As the day goes on it improves but painkillers don't really help. I have an under-active thyroid. I go to stretch classes x3/wk (always have) The pain is very different to my usual back pain. Does this sound like PMR? Feel I am a bit young although am over fifty. Fit and well otherwise. Have appointment next week with Doc. Just thought I'd do some research first. Thanks in advance

[suzy1959]

I will not diagnose, but it sounds a lot like how my PMR started. I was 52 and also have under active thyroid! I had been having a lot of undefined back pain beforehand too. A word of caution- it took me 2 years to get clear diagnosis as I was constantly being told I was too young-don't be fobbed off by Rheumatologists who don't really know that they are talking about. I am on my 4th Rheumy because others were not really experts on PMR/GCA

Good Luck!

[Sofes in reply to suzy1959]

Thank you Suzy.

[piglette]

It sounds very much like I felt before I started steroids which acted like a miracle. Have you had any blood tests, particularly ESR and CRP? Do you think your doctor would let you try steroids for a week to see if you do have a miracle result?

[Sofes in reply to piglette]

Thanks for this piglette - I haven't had any yet as first appointment is next Weds. I was just wondering what other peoples experiences were when they first got symptoms.

[piglette in reply to Sofes]

My GP kept saying I had a virus. I could not get out of bed or dressed or even move my arms without awful pain in the end I was in agony. I did even suggest PMR to the GP and he gazed at me in a dazed sort of way. In frustration I saw a rheumatologist privately who diagnosed PMR in about two seconds. He gave me pred and in fifteen hours and twenty two minutes the magic happened.

[DorsetLady PMRGCAuk volunteer]

Hi,

Yep, certainly COULD be PMR.

But as Suzy says you may not get a quick diagnosis, doctors will tell you you're too young, that's untrue. They may well look for other things first, which it may well be, but hang in there, and be prepared to nag a bit until you get a diagnosis.

Hope it's not PMR, but you do need to know one way or the other.

[PMRpro Ambassador]

Like the others I will say it COULD be PMR - and I was still 51 when mine started although it wasn't diagnosed until I was nearly 57. "Too young" was never used - but the normal blood levels were! Younger patients tend to be more "atypical" with other differences besides the "atypical" age! I had also had back problems for years - which were due to myofascial pain syndrome which is quite common alongside the more general PMR symptoms.

However - PMR is only the name given to a constellation of symptoms which can be similar to the presentation of a lot of other things so your GP should do more than just ESR/CRP to rule some of them out.

In my experience, painkillers don't help PMR, they do help some of the other possibilities.

Here's a reading list to help the research:

patient.info/forums/discuss...

It's a post on another PMR forum where all the good reading is listed to save repeating oneself over and over.

Out of interest - where are you?

[Sofes in reply to PMRpro]

Hello. Thanks you for this. Sorry its taken so long to reply. I am in Wincanton, Somerset. I have my first appointment with GP on Wednesday, so hopefully he will listen and request a range of blood tests. I am very aware that there are all sorts of things it could/couldn't be, its just the longer it goes on the more I feel the symptoms are more like pmr than anything else. I am hoping not. I will read the link you sent this evening. Many thanks.

[HighlandCat]

I have just been diagnosed with PMR and this came only 2 days after my 50th birthday, like yourself fit and healthy attending the gym and running 10k's etc. I was shocked to get my diagnosis. I have been on Prednisolone now for two weeks now and started feeling better within a day of starting. I do still ache when I over do it but I am back to the gym a couple times a week and intend....fingers crossed to get back to doing what I was doing pre diagnosis.

[Sofes in reply to HighlandCat]

Thank you for this, HighlandCat. I am getting really frustrated with the morning pain now. I have just signed up for a 25mile charity walk along Jurassic coast in July and am determined to do it! First appt with Doc on Weds. Glad you got a diagnosis promptly, unlike a lot of people on here and that you are on the mend 😀

[PMRpro Ambassador in reply to Sofes]

Sofes:

No - not "on the mend". Pred does NOT cure PMR, all it does is manage the inflammation due to an underlying autoimmune disorder that causes the pain and stiffness and allow you a reasonable quality of life in the meantime. The actual illness is still active in the background, new inflammatory substances are shed every morning and a new batch of inflammation is caused - which is why you will need a (hopefully lower than the starter) dose of pred for some time to come until the autoimmune part burns out so no more inflammation is being caused. There is little or nothing you can do to speed that up although for some people diet helps a bit - but it won't replace pred. For 75% of patients that happens in between 2 and 6 years - you are in this for the long haul I'm afraid. Men often get through it faster than women - no-one knows why, it is just so. People who are well-trained when it starts seem also to be able to do far more than people who weren't athletic beforehand - but even for them it is a slow process and if they try to carry on as before with no modifications at all they can end up very sore and unhappy.

It is all about pacing and lifestyle changes - and accepting a "new normal". Do that and the entire journey becomes far less frustrating. Don't fight it too hard - use the energy that wastes in living to the best you can. Despite PMR.

[PMRpro Ambassador in reply to HighlandCat]

HighlandCat:

Keep it gentle - or rather, build back up slowly. Just because you feel better does not mean you are cured, the pred is only managing the inflammation and your muscles remain intolerant of acute exercise and will take much longer to recover after activity than you are used to. I'm NOT saying DON'T, I'm saying be careful and break sessions up into shorter periods of each activity, alternating with something using different muscles.

But good luck.

[HighlandCat in reply to PMRpro]

Many thanks for response it is very helpful. I must admit after dancing all night at a rock gig on Saturday I am feeling rather stiff so it was making me realise that I will really have to take things slowly and that I really am not going to be able to behave as if I was still 22 anymore.

Thanks again for reply

[Sofes]

Thank you, all of you, for your posts. My bloods have all come back normal which is great news. My doc thinks it may well be viral with normal inflammatory markers (I agree with this) but to go back in 3weeks if no better. Fingers crossed that won't be necessary.

[PMRpro Ambassador in reply to Sofes]

Having normal blood tests does NOT rule out PMR. That was what delayed my diagnosis by 5 years - "your bloods are normal, there can't be anything wrong" which eventually became hints I was depressed or menopausal (which I certainly wasn't to start with at 51). Approximately 1 in 5 of patients don't have ESR/CRP that outside the accepted "normal range". It goes up to 20 (some doctors accept even higher) my normal is in low single figures.