PMR blood test results due tomorrow

[Pym1]

Hello

I'm 72 and until 4 weeks ago was cycling regularly, mountain hiking, swimming and visiting a trainer weekly. I skied 7 weeks last season.

Over the last few weeks my joints and muscles have become very stiff and painful, starting with pelvic area, hips, shoulders and neck. I can't believe how I've deteriorated from a supple, fit mature bloke to the wreck I am at the moment in such a short time.

I'm pretty sure it's PMR as my wife has had it for four years. My doctor kicked me off on 20mg Pred yesterday and tomorrow will ring when the results of bloods come back.

Stories on this site are very familiar but I will need guidance in coming to terms with this and getting back to my sporting activities as soon as I can.

[jinasc]

Might be an idea to take a look at this website and see if their is a support group near you and also refresh your memory on the details of the diagnosis and treatment.

pmr-gca-northeast.org.uk.

[DorsetLady PMRGCAuk volunteer]

Hi Pym1,

If it is PMR you have to accept that life will change for you, although exercise is good both mentally and physically, your body won't let you do it to the same level as previously, and you need to build in time for rest and recuperation.

Have a look at this -

healthunlocked.com/pmrgcauk...

[Pym1 in reply to DorsetLady]

Many thanks, very useful information. I've already been in touch with my trainer and told him we'll have to review my routine and concentrate on gentle exercises and stretches. Just see what happens when the steroids kick in ( only started yesterday)

Thanks again.

[PMRpro Ambassador]

For the first 5 years of PMR I continued to ski - even though I wasn't on pred. I skied for another couple of years after being put on pred but then gave up for various reasons - not really the PMR. The only difference was I had to build up the amount I did much more slowly.

There is a forum on patient.info where we have several men who are all very sporty. The skier is in a similar position to you - the next season isn't here yet - but the others cycle etc. You might benefit from their experiences.

patient.info/forums/discuss...

Where are you?

[Pym1 in reply to PMRpro]

Broadway, Cotswolds.

Thanks for your helpful and encouraging reply.

I'll look at that site immediately. 👍🏻

[PMRpro Ambassador in reply to Pym1]

My aunt lived at the top of Fish Hill - where you turned off to the prisoner of war camp except by then it was a turkey farm or something...

When you are in good fettle when the PMR starts it is far easier to continue exercising than if you aren't particularly fit. One guy on patient reckons he has been able to do 50-70% of what he did before. You have to know your limits - and stick to them! You can't cheat - PMR bites back

[Pym1 in reply to PMRpro]

Coincidence! Think it's a tanker waste depot now. Cycle past it often (or did!)

Thanks for your post. Think I'm just going to have to go with the flow. I'm not cancelling my flight to Geneva in December yet!!

[PMRpro Ambassador in reply to Pym1]

I wouldn't either - but do be prepared to do short runs and rest between them! Being up the mountain does help though

[Pym1 in reply to PMRpro]

Thanks! The prospect of even managing a modest blue seems a forlorn hope this morning. Patience required 😊

[PMRpro Ambassador in reply to Pym1]

Believe it or not, I had a major flare of my PMR in the days before pred and was stuck at home because for a totally unconnected reason I had, wrongly as it turned out, been stopped from driving. I couldn't cope with busses, couldn't even get in one, and was beside myself. At my husband's suggestion, I managed to get here to our flat in Italy - how I don't really know but it wasn't too bad in the end! I went to bed for 3 days and slept and then decided to try skiing - I'd skied just 8 weeks earlier so knew it could be done. I took all my ski stuff to the lockers at the bottom of the lift and then went up each day using the bus - low slung for people in ski boots so I could get in wearing ordinary shoes.

After a few days I realised that while I was dreadfully stiff going up at 9am - by the time I came home on the 11.30 bus I could walk fairly well. I was fine on skis. The hip movement of skiing is the best movement I ever found for loosening up my PMR-ravaged hips!

I couldn't ski as normal - but a couple of hours on short blue runs before the grottels chewed them up was as good as drugs.

[Pym1 in reply to PMRpro]

So many thanks for your responses. Well done you for persevering. Just received my results which confirm PMR as I expected. 20 mg of Pred for 3 days hasn't kicked in yet. Keeping moving, even at a hobble, seems to help.

Thanks again.

[Polywotsit PMRGCAuk team member]

Hi and welcome to the forum. How rotten that you have PMR as well as your partner. Could you please tell us a little about yourself on your profile (this kind of info that you have put into this post) - it helps us to support one another by giving suitable information!

In terms of 'coming to terms' I would say that it's really important, at least at first, to cut down the intensity of your physical activity and double your recovery time. Then gradually as you adapt to the condition, you will get to know what's the best level of activity for yourself.

We don't have a support group very near you at the moment, unfortunately. Probably the nearest would be Bristol or Taunton. But do go to our website pmrgca.org.uk for info and events. There's also a link to get a copy of my book "Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide." Join the charity and you'll get a regular newsletter and updates on research.

Good luck and hope you have a reasonably easy journey through PMR!

[Pym1]

Thanks for the contact. I'm still waiting to speak to my doctor later, as results not due til today. Based on how I feel this morning I'll be surprised if they don't confirm PMR, though.