Been a while!

[Stifffingers]

Hi everyone

Been a while since I posted. Been doing real good.You May recall I mentioned I have a freind who is a Physio. Kinda got annoyed with me moaning & moping about the pains. Had a long chat with me , told me PMR is a convenient label Drs use , but it can cover a load of things.Get yourself into the Gym !

To which I did . No more than 10 mins on a sit down bike ( not an upright) no tension . Just peddle get your heart rate up. No 20 lengths in the pool( you may remember that error)?

Did that for 4 days felt great, mentally as well .Had a wedding in Belgium over the weekend came back Monday. Today I’ve crashed. Pain s everywhere, struggling to hold a knife & fork legs and shoulders kaput.

Is this one of the “dips” u guys speak so fondly about?

Just took another 5 mg of Pred( can’t get hold of a Dr) guess it won’t hurt. ?

Terrible cramps aswell . Think I may have a cold approaching , is that causing this?

Thanks for any reply’s and advice

[Marijo1951]

I'm no medic, but I'm pretty sure that PMR is a thing in its own right and not just a 'convenient label'. Of course, some other conditions have similar symptoms which might sometimes make it tricky to diagnose at first but - as I understand it - if it responds to pred, then it's PMR and not something else. Certainly the crash after intense activity sounds like PMR.

[Stifffingers in reply to Marijo1951]

Know where you are comming from . However saw a different specialist last week , who kind of said the same thing.

He felt that if was on 15 mg a day I shouldn’t have aNy pain , yet here I was with pain ., and today worse still!

He felt perhaps it was mis diagnosed.Mire blood tests ... here we go again .

Think you are right tho, over indulged weekend , probably too much .

This is a bummer of a disease for sure.

[Marijo1951 in reply to Stifffingers]

I was lucky in that as soon as I was on pred, all the pain and stiffness went (though not the terrible fatigue). I started on 60 mg per day as I also have GCA, but now I'm at 10 mg I'm still virtually free from pain and stiffness. I do have slightly creaky knees, but I know that's a touch of osteoarthritis, because I had it every winter for several years before the PMR started and anyway it goes if I rub in some ibuprofen gel. If you're still in pain on 15 mg per day, maybe you have been misdiagnosed. I hope your rheumy manages to sort it out for you soon.

[Chrob in reply to Stifffingers]

On 15 I still had pain but only 75% in comparison.

[DorsetLady PMRGCAuk volunteer]

Hi,

Have a look at this post from yesterday re exercise.

healthunlocked.com/pmrgcauk...

I’m sure your friend is very nice but is he/she an expert in PMR? As a physio, their mantra is “exercise is good” and whilst I wouldn’t disagree, I would modify (certainly in the case of PMR) to “sensible gentle exercise is good”.

Combination of too much exercise (you need to give the muscles a day to recover inbetween) and enjoyment methinks!

[Stifffingers in reply to DorsetLady]

Thank you for your reply , and your comments are noted.Perhaps my message Read badly. He is indeed nice. He got me into the Gym to crate some form of movement & to raise my heart rate. Only insisted on NO MOREthan 10 mins . Then to text him the next day with how I feel . He did say if I receive any flare ups to miss out a day.& to do no more. Before I went to Antwerp with his guidance we increased to 15 minutes ( wow).

By a strange coincidence the NhS specialist just called me, to see how I was fairing ( mire than the Private man has done) I told him I upped the Pred by 5 mg today as in so much discomfort. Was happy I did so.Told me to carry on like that for 3:4 days to stabilise.

So I guess I’ve learnt : don’t go to Weddings in Antwerp , and take it easy with the Alcohol! Lol.

[DorsetLady PMRGCAuk volunteer in reply to Stifffingers]

Hi, I didn’t mean to imply he wasn’t nice, but they don’t always understand PMR and it’s effects - if he does then you are lucky. Nothing wrong with weddings, alcohol, Antwerp or moderate exercise - just not too close together! 😳

Take care. And hope the increase sorts things out. .

[Stifffingers in reply to DorsetLady]

I know you didn’t.I do believe he does understand PMR.

Is Alcohol a no go with this? The Specialist who rang me this evening made a point of asking if I had been drinking?

Also twice now I have a reaction the following day after Fish & chips. Coincidence?

[DorsetLady PMRGCAuk volunteer in reply to Stifffingers]

Some people say alcohol doesn’t agree with them on Pred, others say it doesn’t seem to make any difference. Must admit for first six months I steered cleared but then I had GCA and started on very high doses, so thought it best. Later on it didn’t seem to have an adverse affect on me.

Can’t say about fish and chips unless it’s maybe the oil they are cooked in, or the batter. Shame though - can’t beat good fish & chips!

[Stifffingers in reply to DorsetLady]

I thought maybe the fact it’s Fried Food?

I wish you well

[sennetta in reply to Stifffingers]

More likely the problem lies in the refined carbohydrate, which doesn't just contribute to weight gain but, and significantly, feeds inflamation big time and is detrimental to the immune system

[prunus in reply to DorsetLady]

That's exactly what I will be cooking tomorrow. Make my own and have beetroot with them. My OH will not eat them when in hospital. Have I spoilt him?

[powerwalk in reply to Stifffingers]

I am appalling with alcohol now - even small amounts can send me into weeks of horror. Everyone differs really. I'm sure your friend is very nice - but her comment has made me sooo mad. Best wishes to you.

[Hildalew in reply to Stifffingers]

Have you ever considered the possibility that your system doesn't like potatoes? I believe intolerance of potatoes and other things within its family is quite common. Before PMR I decided that they were a problem for me but kept forgetting, or succumbing to the seductive delights of chips or crisps. I also, fortunately, discovered many years ago that my system cannot take manufactured MSG (as opposed to the stuff that comes 'naturally' in veg ). One of the most painful reactions I have experienced, before PMR, was the result of consuming the whole of a small tub of Pringles - a mighty combination of potatoes and MSG.

[piglette in reply to Hildalew]

I was told that I should try and avoid nightshade plants such as potatoes and tomatoes if taking pred. I do have the occasional tomato but try not to have too much.

[Nuff1 in reply to Stifffingers]

Re Alcohol - well everyone is going to vary from the next person - e.g. OH is seemingly OK on pattern as prior to diagnosis and pred, i.e. half a bottle of vino twice a week and a pint or two down th pub on Friday nights.

Then the occasion large single malt or small cider at night during week - I daren't sugest cutting down ATM

[PMRpro Ambassador]

"I have a freind who is a Physio. Kinda got annoyed with me moaning & moping about the pains. Had a long chat with me , told me PMR is a convenient label Drs use , but it can cover a load of things.Get yourself into the Gym !"

I'd say your friend has been the cause of your crash and I'd also say they are seriously badly informed. There are several causes of the symptoms given the label of PMR but it is NOT just a "convenient label", the one we talk about here is an autoimmune disorder, just as much as lupus or rheumatoid arthritis or a lot of other things. If he really knew about PMR he would have known that the muscles remain intolerant of acute exercise despite the pred - it just mops up the inflammation. So great care is required at first.

You might find this discussion about fatigue over on the lupus forum helpful. I think it is very relevant to you.

healthunlocked.com/lupusuk/...

Your doctor is also wrong - 15mg does not guarantee freedom from pain and that is now reflected in the starting dose recommendations here

rheumatology.org/Portals/0/...

where they say a range of 125-25mg. Some people need more - and most people who work or exercise tend to need more.

Go to weddings in Antwerp - but DON'T do consecutive days in the gym for 4 days beforehand. There are loads of discussions on the forum about starting to exercise when you have PMR - a basic rule is to start VERY small, 5-10 mins walking, and a day off the next day to see how you feel. The rest is as important as the exercise. You won't remain at that low a level - but you DO need to take a long time over building it up.

[Stifffingers]

I have felt great mentally & physically since he got me exercising for the massive 10 mins.I almost felt it was pointless, after years of proper training. He also made me away of not overdoing it, and to rest if any reactions.

Without a doubt , and this has now become evident. Four days of walking , and attending a wedding was my “trigger”.

Did far too much to quickly , and too soon .

I’m learning. Also now know 15 mg is not enough for me , so I’m upping to 20 mg and take it from there.

Thank you for your response and help

[Longtimer]

On dear, I'M so glad I don't know your friend /physio....he desperately needs educating on PMR.....

Good luck with upping the pred, listen to your body...not him.....

[Stifffingers in reply to Longtimer]

Really? .Dont think he’s done anything untoward.

My Private specialist gave the very same advice., as did the NHS guy.

Perhaps they too need educating then ?

Prior to my weekend away , felt better for it.

[PMRpro Ambassador in reply to Stifffingers]

You WILL feel better for the exercise. But we are talking here about the way to get to the long term feeling better without the shorter term crash you came to the forum to talk about.

The secret with exercising with PMR is pacing and learning your limits - not my limits, not the patient next door's limits - YOURS. So using pacing you start VERY small and NOT every day. Doesn't mean you won't get there, just not yet.

You wouldn't go out and run a 5km race without training would you? It is exactly the same thing.

[Angiejnz]

I get the ups you felt for having done some exercise, my lovely rheumy advised I do 5 minutes exercycle up to 5 days a week and I do feel better the weeks that I remember to do it. On the flip side, when I am busy I forget that I have already used up lots of teaspoons of energy on the bike and get caught doing too much so get flares of varying sizes. Tricky to balance but I agree that I feel better overall if I do light exercise.