I am going the wrong way but know it's right!(I think)

[Dewdrop456]

Hello again.I had got down to 5.5mgs of Prednisolone but after an extremely stressful summer...1) I am in the middle of a welcome divorce but the nitty -gritty is taking ages to sort out with and no indication of when it will be finished,2)dealing with problems of having to physically sort out the house being divided into two whilst "ex" still in place ...really stressful and 3)trying to find a different kind of job .

.I have spent all summer chasing various leads and trying to make progress with all three problems and everything I try or follow up leads to a complete blockage . I have got nowhere . Just tied myself in knots with nothing to show for it.

Anyway I have been gradually increasing my dose because I've had various pains. Thes e have been mainly muscle heaviness in the back of both thighs, feeling tired and most annoying and worrying the pain in the base of my skull has returned,it's very sore. I last had it before the PMR was diagnosed when the GP told me to see an Oesteopath! I am up to 8 mgs now . I completely understand ,thanks to good advice on here ,that I have to take the mgs that I need but it's still hard to increase isn't it?I actually feel I should take take even more than 8 because the skull pain is still there.Should I? It seems a long way from 5.5 and the apparently not -so - harmful 7 mgs level.I would welcome any advice regarding the areas of pain( thighs ,skull....no sight problems or temporal pain) upping my dose etc . Also if anyone could stop me running around like a headless chicken that would be a bonus.Many thanks ...sorry to go on and on.

[PMRpro Ambassador]

Did you see a rheumy at the start? The headache bothers me a bit - even if the GP dismisses it. 7mgs is only a nominal "safe" figure - 8 or 9mg is probably just as safe for some people. Doesn't appear to do me much harm!

[Dewdrop456 in reply to PMRpro]

No I haven't ever been referred. The pain has been building up over the summer,it had disappeared for a few months.Its annoying because obviously I have to keep moving my head . Shall I keep upping my dose until it goes do you think?

[PMRpro Ambassador in reply to Dewdrop456]

It needs to be diagnosed properly. If you didn't have a PMR diagnosis I might also say try an osteopath - but it went with pred didn't it? Which makes me think there is something else going on. It could be GCA - but it could be something else. A GP isn't necessarily competent to assess the possibilities. They aren't trained in the field.

[Dewdrop456 in reply to PMRpro]

All right . In that case I had better go back to the GP as a start I suppose.

I have got an appointment with a physio soon regarding the previously mentioned tingling (and sometimes agonising) pains in my arms and fingers .I found the "chin tucking"exercise on You Tube which helped make the pain bearable .I think that the two might be related and although the neck X Ray was "normal wear and tear"there must be something wrong in that area.

Anyway thank you again for your reply and help.

[PMRpro Ambassador in reply to Dewdrop456]

I would go to the physio too - have you had x-rays? Or even better, an MRI?

[Dewdrop456 in reply to PMRpro]

Oh yes ,I will keep the physio appointment .I made a bit of a nuisance of myself about my arms ,they kept trying to make me take various drugs which had awful side affects. I wanted the cause to be discovered not just masked. The chin exercises really helped but obviously couldn't cure but they enable me to cope. Anyway the GP said they haven't the budget to ask for a MIR scan and the way forward is to start with the physio and possibly get referred for a scan through them.So two months on my appointment is nearly due.....

[PMRpro Ambassador in reply to Dewdrop456]

I would hope no decent physio would touch your neck without at the very least an x-ray and, to be fair to the GP, a request for an MRI shouldn't be made without a plain x-ray to rule out the obvious. But that could have been done weeks ago.

[Dewdrop456 in reply to PMRpro]

No no ,I did mention that the Xray just showed normal wear and tear.So I will try to "qualify " for a MRI scan via the physio because I really want a diagnosis which would then hopefully lead to informed treatment and not just guessing!

Thanks PMRpro.

[HeronNS]

PMRpro is right that you need to be seen by a specialist and the sooner the better. In the meantime, tension, as you know, can cause a lot of stress and pain in the muscles. So if you could see a physiotherapist to help you with muscle tension issues that could relieve some of the discomfort.

[Dewdrop456 in reply to HeronNS]

I agree about the tension. It's bad though ,it feels like a solid ball of pain at the base of my skull.Anyway I'll see how I get on with the physio.Thank you and best wishes.

[DorsetLady PMRGCAuk volunteer]

Hi

Can’t help with the headless chicken scenario- sorry!

But as PMRpro says not too happy about the head pains - you really need to check them again.

[Dewdrop456]

Yes I will.Its all very wearying isn't ?

I am used to constantly rushing around ,I could actually be busy in a empty room! But I normally get so much done that's why it's been frustrating being blocked in all my problems by things I can do nothing about!!Hence the flapping about.

Never mind "Deep breath ,this too will pass"(I hope).

Thanks.

[SheffieldJane]

I am sorry that this is such a stressful period for you. My back of the skull pain is caused by Cervical Spondylosis, an x Ray would be a good move. You have also been doing an incredible amount of physical activity in a state of tension. May it pass quickly!

[Dewdrop456]

Thank you ,Sheffield Jane.

(The X Ray showed normal wear and tear.

[PMRpro Ambassador in reply to Dewdrop456]

healthline.com/health/cervi...

The term cervial spondylosis is just the fancy name:

"Cervical spondylosis is a common, age-related condition that affects the joints and discs in your cervical spine, which is in your neck. It's also known as cervical osteoarthritis or neck arthritis. It develops from the wear and tear of cartilage and bones."

[Dewdrop456 in reply to PMRpro]

Soooo ,another question dear PMR pro ,sorry. If the pains in my base of skull and the pain in one shoulder are intermittent (,sometimes I'm clear for a few weeks) what does that mean?

Is there damage or not? Surely the pain would be continuous . It can't be the Pred because I was down to 5.5 mgs a few weeks ago and pain free .Now I'm back on 9 mgs.

[PMRpro Ambassador in reply to Dewdrop456]

There are other things but I'm no expert. But I agree - if it is due to the "wear and tear" you would think it might be more constant. I was told by an orthopod my low back pain was "wear and tear" and I'd have to live with it - which since at the time I couldn't walk or stand for more than about 15 mins without a nagging sick-making pain (you know the sort I mean?) wasn't encouraging. It turned out to be entirely due to spasmed back muscles - and the local pain clinic and physiotherapy sorted it out very well. It still turns up now and again but maybe once a year now.

So the wear and tear in my knees and back that was supposed to be there - isn't! There's more than one cause of these pains and it isn't right to just say it is age-related...

[Dewdrop456 in reply to PMRpro]

PS.Thanks for the link I will read it with interest.