Hello, I'm new to this community but already learning a lot!

[Purpleazalia]

Hi I'm so pleased to find this community. I was diagnosed with PMR 4 months ago and it has taken me as long searching and reading all the information I can find to come across PMRGCAuk!! I've been busy reading posts since yesterday and really feel I'm learning a lot from people who will understand what I'm going through. It's so difficult trying to explain to family and friends without sounding like I'm whinging all the time!

[DorsetLady PMRGCAuk volunteer]

Hi and welcome.

This might give a bit more info - and maybe help you to explain to nearest and dearest - although they never fully understand - healthunlocked.com/pmrgcauk...

This might also help explain -

PMR easy explanation

Your immune system has stopped working correctly so your body is in effect fighting itself.

In your illness, it causes your blood vessels to become inflamed so the blood doesn’t get around to feed your muscles in your shoulders, arms,hips, legs which results in stiffness, pain and fatigue.

The only way to control those symptoms is to take steroids until the illness goes into remission.

[Purpleazalia in reply to DorsetLady]

That's much easier to take in and make sense of than using wording from the information I've been reading, thank you. I'll follow the link and have a read of that too

[DorsetLady PMRGCAuk volunteer in reply to Purpleazalia]

Well hopefully the link is easy to read as well - it’s written from a patients viewpoint!

[PMRpro Ambassador in reply to Purpleazalia]

Most of that information was never shown to a patient! And doctors have a very different viewpoint!

[MrsNails]

Welcome 🙏🏼

If you have any questions don’t hesitate to ask, don’t worry we’re always happy to help

Kind Regards

MrsN

[Purpleazalia in reply to MrsNails]

Thank you 😊

[Toods]

I know exactly what you mean... I am still waiting for a diagnosis as I seem to fall into that camp of people who have to fight to get heard. My GP won't put me on steroids and the rheumatologist seems confused by my symptoms which are identical to those experienced by most people on this forum. So that means it sounds as if I am just continually whinging or attention seeking. My husband was diagnosed with heart failure during lockdown and is receiving incredible care and support, and I think people feel I am attention seeking as a result and so I try not to talk about it too much. However, that's obviously the last thing I want - I would just love to feel fit, well and pain-free again! The only place I really get any support or information is this forum.

[CLIVE-1 in reply to Toods]

Hi Toods,

just over a yea\r ago ,out of the blue I was suffering terrible shoulder pains in the morning, went through the normal GP checks blood tests etc and none indicated it was PMR I ended up being prescribed very strong painkillers and even they had little effect I attended the surgery more times in one month than I had done in 30 years, the practitioner nurse clearly could see I was in real difficulty, ( and have a high pain threshold ), she told me all the symptoms you have indicate PMR but not a single test corroborates that it is in fact PMR, she telephoned the rheumatologist who has checked me out in the hospital clinic for his opinion, his reply" I have very rarely come across patients where all the symptoms indicate PMR but none of the test confirm that diagnosis,If the patient ( in this case myself ) is on very strong painkillers with little effect and this has been gong on for 4 weeks now,just treat as if it is PMR and see if there is an improvement,I was prescribed Prednisolone at 5Mg, and THE VERY NEXT DAY the improvement was dramatic, now a year later i am slowly reducing the dosage and am down to 3MG there is some pain first thing in the morning i shall carry on for a few weeks and if this level of pain continues will go up to 4Mg this is all done with the knowledge of the GP who accepts I am not a pill popper, for the slightest ache, so I think you need to insist your GP treats the symptoms which indicate PMR good luck, and be INSISTENT

[Toods in reply to CLIVE-1]

Thanks so much for sharing... I am realising that you need to be insistent! Like you, my markers are not raised but I have all the symptoms. Though he did say I had too much pain for PMR... 😧😬Without the raised markers no-one wants to prescribe steroids.... I carry the gene for As so the consultant has arranged an MRI for Weds. Fingers crossed for some answers!! I would just like a diagnosis and a treatment plan of some sort so I can get on with my life less painfully!!

[PMRpro Ambassador in reply to Toods]

I can only hope that one day HE develops PMR and gets the intense pain version - and meets a doctor who won't write the script ...

[Toods in reply to PMRpro]

That would be karma, wouldn't it!! 😂

[PMRpro Ambassador in reply to Toods]

I'm not usually a nasty person ...

We have had a couple of former GPs who have admitted that they do regret their attitude to PMR patients in the past in trying to get them off pred asap!!!

[Toods in reply to PMRpro]

I really do wish they could experience this pain.... (and I'm not usually a nasty person either!!), but then they might understand and show some kindness.

[Purpleazalia in reply to Toods]

Thank you for sharing your story with me. How awful for you. Has your GP or rheumatologist diagnosed something different, or are they still trying to identify what your illness is? It was over 2 years before I realised I needed medical help. I'd never heard of PMR. I thought I had a type of flu which wouldn't go away because I was run down. I hid it from my grown up children because my ex husband had been diagnosed with terminal cancer (he has recently passed). This was partly because I felt they had enough to worry about, but also because I feared they'd think I was competing for their attention. It was a relief to finally know what was making me so ill, and to recieve treatment. I hope you get your diagnosis sooner rather than later

[Toods in reply to Purpleazalia]

I'm so sorry to hear your story, and very sorry for your sad loss.

I relate to what you say about keeping it from your children - my husband is getting a lot of attention with his current (though almost totally recovered) heart situation, and it looks as if I'm saying, 'But what about me?' I can assure you that is the last thing I am trying to do.

[Toods in reply to Purpleazalia]

And in reply to your question, they are still trying to decide what is wrong. I have the symptoms, but not raised markers as, I gather, is very common.

[Daffodilia]

I read forum every day and have learned loads

[Hidden]

Hi and welcome. Like you I am new and have found this group both enlightening and supportive.

We are a mixed bag, some are in an acute phase, I am entering my third week for treatment of GCA, others have been in a chronic or state of remission for years. Whatever your quest there will be an answer from someone here. The most diverse questions always get a response too.

If you haven’t downloaded the phone/tablet app, you might want to consider it if you use them.

Good luck.

[Purpleazalia in reply to Hidden]

Thank you. Good luck with your own journey too. Finding this community is just what I needed. I had been wondering whether there was an app, I'll see if I can find it

[Hidden in reply to Purpleazalia]

If you access this site via the web on a device it should prompt you to take the app. Designed for phone but works fine on either an Android/iPad.

Alternatively, App Store, and the app is HealthUnlocked- green background white H

[Cats64]

Its the same for me, although my sister has been in hospital since I was diagnosed in September with PMR, as she has had major surgery and has been hospitalised for 5 and a half months my PMR doesn't seem as important. Thank god for this site, because I can see from the posts what should be happening and it really does make you fight for your doctors support, because you know what treatment everyone else is getting, and like you Although I knew something was wrong I did not know PMR existed.