New here Hi

[Glutusmaximus]

Hello everyone- I’ve been suffering with extreme fatigue muscle aches inc knee pain for 2years rheumatologist done X-ray on my knees and hips 2021 and showed mild OA but shouldn’t be causing so much pain.

I have terrible neck shoulder pain recurring shoulder bursitis in both and tendonosis I’ve been worrying as my eyes are blurry and suffering with headaches now - I’m literally dragging myself about and at 51 I feel my life is not what it should be. My endocrinologist has mentioned PMR and to get tests done so another few weeks waiting to see why I am and have been struggling for so long ☹️

[piglette]

Is anyone willing to give you say 15mg of steroids for a week as a test to see if that helps?

[Glutusmaximus in reply to piglette]

Hi- I I had steriods tablets in December for a chest infection after covid and i told my doctor then that the muscle aches were not so bad I’m seeing her today after my endocrine appointment last night so I’ll see what they say

Thanks for the reply

[piglette in reply to Glutusmaximus]

Hope you can get a trial

[Glutusmaximus in reply to piglette]

I’ve just asked the doctor she will prescribe it but after tests as I have to have my cortisol done again for adrenal deficiency as it keeps dropping but hopefully after next week I’ll get to try them 😊

Thank you for your help

[piglette in reply to Glutusmaximus]

Steroids will sort out your adrenals for you!

[PMRpro Ambassador in reply to piglette]

Not exactly - only as a replacement therapy like insulin sorts out pancreas problems!!!

[piglette in reply to PMRpro]

I meant to say PMR test. Brain going.

[PMRpro Ambassador in reply to piglette]

Quick - run after it!!

[piglette in reply to PMRpro]

I managed to slip on my front step recently, fell backwards and split my head open on the letter box. I am definitely whoozy at the moment, so my brain probably is out there having fun without me!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Ouch! Hope you soon feel better🌸

[piglette in reply to DorsetLady]

I am incredibly stiff and my head hurts. Had first responders and then the ambulance team to sort me out!! I did not realise first responders are volunteers. They are given a very brightly coloured car though.

[PMRpro Ambassador in reply to piglette]

I dunno - can't even let you out the door!!!!

[piglette in reply to PMRpro]

😵‍💫😵‍💫😵‍💫

[Glutusmaximus in reply to piglette]

Hope you start to feel better soon 🥰 it’s scary falling and shakes you up .

I worry about falling as I fell down the stairs in 2021 when I couldn’t really feel my legs - I live on my own , thank god nothing was broken and my stairs are not that long as I live in a cottage so old style corkscrew staircase but it hurt I was bruised badly landed at the bottom and just cried, i couldn’t reach out for anything to grab as my left shoulder was frozen and just a wall on the right side , I didn’t get checked out maybe I should of and pushed back then but I’ve been constantly told basically it’s in your head you need to go to the pain clinic learn how to breath to relax your muscles .

I do hope after my tests she starts me on the tablets to see how I am and I get some answers and a diagnosis so I know why I’m like this.

It does help to talk as no one understands they can’t see it by looking at you 😊

[piglette in reply to Glutusmaximus]

I must admit I was shaking like mad afterwards. I live in a Victorian cottage which has steps all over the place! I hope you get support with tablets and some answers.

[Glutusmaximus in reply to piglette]

Snap me too and very wonky steps I never thought when I moved in 2015 that I wouldn’t be able at my age to cope with the steps/stairs but I have to be very careful now

Thank you 😊 I hope so

[piglette in reply to Glutusmaximus]

I am in the same boat. Now I am very aware of steps in houses!

[Merryfield in reply to piglette]

oh my gosh, piggie. i am so sorry yi hear this!!

[Bcol]

Not sure why you should have to wait for this. A quick test of giving you 15-20mg of Pred for a week or two would quickly show whether it has any effect or not. If it does have a big improvement then you/they probably have an answer.

[Glutusmaximus in reply to Bcol]

Hi - I don’t know I’ll ask my doctor today as I’m in so much pain I really don’t understand why they are not thinking out the box

[PMRpro Ambassador]

Ho and welcome!

I'd hardly call this thinking out of the box - it really is textbook PMR BUT I will lay odds they will play the age card and allege that you are too young. You aren't.

And what concerns me most is that you are now getting visual symptoms and headache. Have you any jaw pain when eating? Please emphasise the headache when you see the GP. They are potential signs of GCA, PMR's big sister, and that requires urgent attention.

If the GP prevaricates, find your local UES optician and get your eyes checked as an emergency. If all else fails - head for A&E and be insistent about being seen.

[Glutusmaximus in reply to PMRpro]

I have had my eyes checked 3 times this year, when I had a major flare in February I could hardly see and vision problems floaters . I had a new prescription for glasses long distance and reading - I can’t hardly read the screen on my phone without glasses now and I’ve never been like this , I had another test in august when I had really bad headache and was sick , doctor just gave me migraine tablets if it happens again , the optician done another eye test and I needed a new prescription I’ve never heard that you need another prescription within 6 months, I went again last week to the opticians as my eyes are still blurry sore and puffy in the mornings which is when she said about dry eye syndrome and to use the drops which aren’t helping vision wise just soothing the itching.

No other problems .

My doctors don’t seem to understand or worry but I do - I’ve had a few times where I’ve felt a passing over my head when asleep and wakes me up and when this happens I know the next day I’ll wake with a severe headache again! doctors scratching their heads it’s only the endocrinologist last night said to get checked for PMR .

I cry in pain I cry out in the night when I turn all my muscles hamstring calf and glute muscles are tight and nothing helps physio is hurting more I’ve been put on pregabalin but it does not help at all. I feel like a pharmacist my kitchen cupboard is full of pain killers that haven’t helped.

I just need to be out of pain and for them to look into this now , as I’m locking myself away I can’t cope with interactions or deal with problems my head won’t let me work stuff out.

Thanks for advice about pushing the doctor today for answers.

[Glutusmaximus in reply to PMRpro]

Not ache in my jaw it clicks occasionally when eating but I can feel my teeth scrapping up behind my front teeth maybe that’s where I’m in pain , my dentist on the last check up said I have jaw movement out of line. Is it where you can get lock jaw maybe I slightly remember that.

[DorsetLady PMRGCAuk volunteer in reply to Glutusmaximus]

Have a look at this re jaw - nhs.uk/conditions/temporoma...

.. and is dentist going to do anything about it?

Eyes/headaches - definitely need checking out for GCA - blurriness could also be catacts but would have hoped the opticians ruled that out...

Please follow the advice given by PMRpro re local UES optician, if it GCA, it's not to be messed with -

healthunlocked.com/pmrgcauk...

[Glutusmaximus in reply to DorsetLady]

Ok I’m unsure what GCA is I’ll speak to the doctor about this and find an UES optician what is this

[DorsetLady PMRGCAuk volunteer in reply to Glutusmaximus]

Plenty [probably too much to be honest] in this link -

healthunlocked.com/pmrgcauk....

..but something anyone with PMR [or potential PMR ]should be aware of -

this is from charity's web page - which is easier reading - so suggest you start there-

pmrgca.org.uk/information-a...

Hopefully its not that, but always best to know, just in case....

[Glutusmaximus in reply to DorsetLady]

Thank you 😊

[PMRpro Ambassador in reply to Glutusmaximus]

Use the eye drops LOTS - the more you use them the better and if it is dry eyes then it may take a few weeks to help. I had that problem last summer and was scolded by the eye doctor for not using drops enough. It may help if you ask the optician or chemist for gels for overnight, they are a pest in the daytime because THEY can make things blurry too.

It isn't uncommon for PMR to result in a change in prescription - both SnazzyD and I suffered it and we both solved it by moving our specs up and down our noses to see better rather than spend a lot on different prescriptions - it can change from day to day at times.

[Glutusmaximus in reply to PMRpro]

Thank you I’ll persist with them

[PMRCanada]

I feel for you and the agonizing pain you are in. You are describing how I felt for 6 months prior to diagnosis of PMR (less the headaches and eye issues). I totally understand how it can lead to isolation and despair. Chronic pain will do that.

Hopefully they will do a blood test soon to look at your inflammation markers (ESR and CRP), and prescribe a starting dose of prednisone to diagnose PMR, as you certainly are describing typical symptoms. As others have mentioned addressing your headaches and eye issues is imperative to rule out GCA.

Now at least you are armed with some information to share with your medical team so that a diagnosis can be made and treatment started so you can finally get some relief. Of note, PMR does not respond to painkillers, prednisone is the most effective treatment. Unfortunately there is not a PMR marker per se, so all the tests listed above (along with imaging at times), and a trial of prednisone, is used to diagnose PMR.

[Glutusmaximus in reply to PMRCanada]

Thank you I’ve used the advice on here with my doctor today slumped bk in her chair asking me what I want out of this 🙄 I just need my life back and not to worry it’s causing eye issues or something worse

They won’t do a RTA test too expensive and a consultant needs to do it through nhs I’ve had to go private to endocrinologist and he’s requested tests inc TFT which they won’t do and my cortisol which keeps dropping she said he needs to explain why and what he’s looking for - age did say she’s give me a week on prednisone to see if I get relief but now not until I have the bloods so I’m pushing for next week so I can try the treatment for PMR to see if it helps I just need a end in sight to see what I’m working for no one has taken interest and I’m so grateful for the help on here to push my doctor today as I wouldn’t of had a clue otherwise so THANK YOU to this site and the people who have taken the time to give me advice I really hope I have some answers soon and get some pain relief

I’ll get my eyes checked as advised too

😊 thank you

[DorsetLady PMRGCAuk volunteer in reply to Glutusmaximus]

my doctor today slumped bk in her chair asking me what I want out of this 🙄

Simple really -a diagnosis and then relevant treatment - not exactly rocket science . Something she should be actioning…and getting help for you if she doesn’t know what to do herself.

[Glutusmaximus in reply to DorsetLady]

Thank you - I need to speak up more and stand my ground not be pushed out the door with prescriptions I don’t need.

I’ll push more now with the support I’ve been given - she actually eventually after saying all my symptoms over and over again ! - ya I can see all your points and it looking like possible PMR we can trial for a week after the tests are done.

[DorsetLady PMRGCAuk volunteer in reply to Glutusmaximus]

It not always easy to stand your ground -especially early days when you don’t know what to expect.But hopefully she will decide to trial Pred…and that a week is enough for you to see a significant difference…

[Glutusmaximus in reply to DorsetLady]

Thank you I hope so 🙏🏼

[Sophiestree in reply to Glutusmaximus]

I think they've all been on some therapy training as a lot of GPs do this "how can I help you, what do you want out of the visit" which is fine if you're well enough to have prepared, but actually they need to listen and think about what is presented to them. Now I know they do this I get prepared beforehand.

When I was a Childline counsellor you had to ask the children what they were hoping from their call today - madness, how on earth would a child be able to answer that. They just want someone to hear them and empathise.