Still not sure whether to accept PMR diagnosis
Posted , 7 users are following.
Hi all. Not been on for a while, had do much on & takes me so long to do anything.
PMR diagnosed 6 months. All pain from waist down returned, including muscle twitching & tingling. Neck, shoulders etc all fine.
My inflammation is back to a very normal 12 ESR & 5 CRP.
I can't walk or stand for 30 mins without severe pain & needing the loo. I get out of bed fine, my pain starts when I'm on my feet.
I've been back to doctors several times asking for referral & further investigation. Doctors can't refer as PMR is dealt within surgery, here in the South East.
Given me HRT as hormone levels show I'm menopausal & the hot flushes have been coming in droves. I'm 48.
They say alot of other my symptoms & the fact I feel a complete wreck are both PMR & menopause.
If this is the case I will accept that & realise there's a long road!
My other option is to keep on at them like a hypochondriac!
I'm still very confused by it all. Happy to hear your stories & any feedback. Thank you so much.
0 likes, 21 replies
Anhaga Sars77
Posted
Just wondering if you have back issues? In most cases I think people with PMR loosen up once they've managed to haul themselves out of bed and moved around a bit, rather than getting worse after rising. But compressed nerves can do funny things including causing symptoms far from the source.
Sars77 Anhaga
Posted
Hi, yes have back issues. doctors sent me for physio last year & now blame it all on PMR. Thanks for your reply, nerves are definitely an issue in this case I think.
Anhaga Sars77
Posted
EileenH Sars77
Posted
Have you not seen a rheumatologist at all?
What you describe doesn't fit with simple straightforward PMR - and the "I can't walk or stand for 30 mins without severe pain & needing the loo. I get out of bed fine, my pain starts when I'm on my feet." absolutely isn't. At the very least you need someone to investigate the state of your spine as there appears to be something going on that results in a change between horizontal and vertical.
I wouldn't accept a refusal to refer - have you someone to take with you?
Sars77 EileenH
Posted
Hi Eileen.
Not seen a rheumatologist, up to now they've said not necessary as will monitor at surgery. I'm on 20mg Pred daily & they insist as it's PMR they'll watch and increase again as necessary.
My physio thought early degeneration of spine possible. On his investigation he said I had no reflexes below waist. My numb legs & tingling were likely to be nerve damage caused by spine. This report went to doctors & after doing blood tests diagnosed PMR.
Taking a chaperone is an idea I hadn't thought of & an excellent one, thank you!
maggie67878 Sars77
Posted
You kindly replied to my first ever post a couple of weeks ago wherein you suggested my symptoms (severe pain on my left-side on getting out of bed and lasting for a couple of hours or more) might not be entirely due to PMR. I saw my GP and have subsequently had an X-ray, which confirms that the severe pain I am having is due to degeration of my lower spine and referred pain. Over the years I have fractured my coxxcyx on two occasions. I just wanted to thank you for pointing me in the tight direction.
Regards Maggie
Sars77 maggie67878
Posted
EileenH maggie67878
Posted
There is far too much blaming PMR and/or pred for pain we have - it isn't always and when you get the diagnosis right you can manage it better. I'm glad you now have the right answer - though whether it helps a lot I don't know! Can they do anything to helps the pain?
EileenH Sars77
Posted
It's my suspicion too - and the nerve damage needs to be taken seriously. Good luck!
maggie67878 Sars77
Posted
Hi Sars77
At the moment it's still - Tramadol (2 x 50mg tabs 4 times per day plus up to the same dose of Paracetamol)! and of course the Steroid and supporting PMR meds. I've just this past week reduced my Pred from 20 mg to 17.5mg, so it's back to all the clonking noises coming from my joints when I move. I am having blood tests mid next week and when the results are available I shall see my GP. I am hoping that we can then concentrate on alleviating the excruciating pain which I now know emanates from my lower spine. If I could sit or lie down all day I would be fine but immediately I stand up its agony, despite the meds. Quite frankly I feel like a hypochondriac-old croc whose pills aren't working. I hope you get the help and support you need very soon!
maggie67878 EileenH
Posted
Hello Eileen
At the moment it's just pain management with Tramadol, Paracetamol and the PMR related drugs. If I could or would sit or lie down all day I would be fine but as soon as I stand up it's agony... but a least I know what it is now! Thanks for your help.
floramac Sars77
Posted
Sars77 floramac
Posted
Yes, 20mg daily. Initially I responded well to Pred, then was increased every few weeks when pains started to return . My inflammation levels were raised initially & the Pred did reduce so I responded and presented in a typical PMR way.
Anhaga Sars77
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Sars77 Anhaga
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EileenH Sars77
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What an appalling way to mess about with your dose! After the intial week at 30mg you should have reduced steadily and SLOWLY to find the right dose. Apart from any other consideration you were going to miss finding that "right" dose and it is unfair to anyone's body to go from 30 to 10mg just like that. Especially in PMR.