Does Stiffness Count as Pain?

[Louisa1840]

Hello All,

I will have had PMR for eight years this May and am currently taking 2 mgs of pred daily. I really have no pain anywhere but I am just so stiff. If I meet friends for coffee or lunch I can hardly walk when I get up and have to lean on chairs to get out of the cafe. When I get up first thing in the morning, it feels as though my legs won't hold me up and I manage to get to the bathroom by hanging onto our brass bed.

I seem to remember stiffness starting in my fifties (so that would have been soon after menopause). I was working as a tour guide at the time and was on my feet all day. I did a lot of stretches prior to going to work or I couldn't cope.

I am interested in the idea of this stiffness being associated with hormones rather than PMR.

Your thoughts lovely people........?

[DorsetLady PMRGCAuk volunteer]

Unfortunately many of the aches etc we had before PMR/GCA resurface once on low doses of Pred..so if they are similar could be that. But adrenals struggling sometimes give same issues, it’s very difficult to know what’s what when you get to very low doses..

Plus you are a few years older than when you start this journey so that has to be factored in as well. Did those exercises you tried previously help at all?

[Louisa1840 in reply to DorsetLady]

Thank you, Dorset Lady, that's all very much as I expected. Yes, I do the stretching exercises plus others I've picked up along the way and they help enormously.

[PMRpro Ambassador]

Not that I am suggesting you buy their shoes - but I thought this article from Kybun shoes was interesting.

kybun.com/advisor/health-co....

and also this one about myofascial pain syndrome which goes beyond articles I have seen before on MPS and which I found very interesting - including the confusion with fibromyalgia which they mention. Sorry about the English, bit hard work!!

pathos-journal.com/2020_3_2...

There are a lot of reasons for stiffness, even without PMR.

[Louisa1840 in reply to PMRpro]

Strangely enough, Pro I was checking out theKybun site only a few days ago. I'll look at those other links when I'm back on the P.C Thank you......

[Pixix in reply to PMRpro]

Very interesting article, many thanks! S x ps will look at the shoes next, but I have such good individually made orthotic insoles, that I’m not sure buying good shoes helps. The first thing I have to do with a new pair, is take out their insoles!

[PMRpro Ambassador in reply to Pixix]

And with those shoes it is probably as much the insoles as anything else that is important.

[Pixix in reply to PMRpro]

That’s just how I feel! I’ve taken apart a fair few pairs of trainers in the past 5 years (now I can’t wear anything else…I need shoes that come up round the heel well, too), & it’s fairly obvious to me that the shells are the same quality (except some plastic & others excellent leather), but it’s the insoles that you’re really paying for, & they aren’t always that great, either!! The profits must be huge, I think! S x

[PMRpro Ambassador in reply to Pixix]

More than likely ...

Mind you - my M2M insoles cost a tidy 180 euros!

[Pixix in reply to PMRpro]

My insoles are £150 to buy, I’m just grateful I get them free! I get a new pair each year, so I’ve got a few now. It’s a pain when they change them, though, a bit like starting again with low quantity!!

[PMRpro Ambassador in reply to Pixix]

You can set them against tax here ...

[Pixix in reply to PMRpro]

Great, if that makes a good difference…I’ve no idea here, I just like to get them free…could be a benefit when you move to Scotland…but their benefits aren’t always the same.

[PMRpro Ambassador in reply to Pixix]

I assume you get the VAT back ...

[Pixix in reply to PMRpro]

No idea, I don’t pay anything at all!! I guess if I wanted, for example, 5 more pairs I would have to pay, perhaps. Each time there’s a change I can get two pairs free, & often I can take others back to be modified, also free. They are so strong I’ve yet to damage one in any way! I have a six monthly checkup meeting/appointment, but can phone any time I need them. But I guess if anybody pays for them, they can reclaim the VAT, but I don’t actually know!!

[PMRpro Ambassador in reply to Pixix]

I meant here! But only those who can't walk without them get them paid for by the healthcare system

[Pixix in reply to PMRpro]

Oh, good! Sorry, I was very tired & I'm living in acute pain from 4 week old knee injury (& crutches & rest for next two weeks), & it seems to have fried what was left of my brain! I understand ‘your’ system now! Thanks for your patience!

[Body_bonkers]

Your question is something I am also pondering at the moment. I’m feeling far too stiff and yet the rheumatologist says it cannot be PMR flare due to the absence of pain and apparently I have not been on steroids long enough to have adrenal issues either so therefore hormones are to blame ! My HRT consultant says nonsense and I’m inclined to agree based on my journey to this point.

Perhaps you should try an increase in steroid dose and see what happens as a process of elimination. A lot of ladies are helped by HRT but it does nothing for my joints and actually helped getting to my PMR diagnosis.

[GF62]

Hi Louisa I was interested in your post. Sorry to hear you’ve had PMR for 8 years I’ve had it for 5. I can totally empathise with your stiffness when I too was on 2mg per day. I had to get Ibuprofen into my system asap each morning to ease the stiffness and muscle pain. It truly helped but I was constantly aware of the physical limitations I was experiencing. However I recently had a flare up and had to increase my prednisolone to 20mg pd and begin yet another taper towards zero. My rheumatologist told me that my kidneys should have started to reproduce their own cortisol below 4mg prednisolone pd but I had no evidence that that was the case. I was so stiff and sore, exactly how you describe. I will ask him at my next consultation if it is more likely the maintenance dose of steroids for me personally, should be no less than 4mg pd . Thank you again for sharing your experience.

[PMRpro Ambassador in reply to GF62]

Not your kidneys - your adrenal glands, which are close to your kidneys, hence the name.

[Louisa1840 in reply to GF62]

And thank you, GF62. I feel for you having to go back up to 20mgs and having to face another taper - but sometimes needs must...... There have been so many suggestions on this site that some of us will never get off pred entirely but that a low maintenance dose it is for life. If we recognise that, below 5 mgs daily, is not so very terrible perhaps we can live with that?