Food and Exercise to help PMR

Has anyone found a special diet and a certain exercise that's helped them. We all know we shouldn't eat inflammatory food, but for those that no longer do has it helped ?

[PMRpro Ambassador]

Really everyone is different - some find not eating nightshade veggies helps. others don't. For some it is dairy, others alcohol, others sugar. In the same way there appear to be several versions of PMR, there are multiple things that may - or may not - help you. I've tried most things at one time or another - the only thing I notice is more carbs than usual makes a difference but not a massive one. In the first 5 years my evening glass of wine seemed to help! Probably vasodilation.

There are also no exercises that help everyone. I managed PMR pain and stiffness for 5 years by doing aquafit in the morning and was then able to do a Pilates or Iyengha yoga class - and overall they helped the stiffness and mobility. Nothing relieved the pain but I could move more easily. Warmth helps the back muscle spasm - and overall that helps but it doesn't relieve the PMR problems.

Only pred at the right dose.

[Hidden in reply to PMRpro]

Several Versions ?? Please enlighten PMRpro. I remembered to use your correct name this time...apologies again for my last post calling you the Moderator. I thought you were in charge of the Forum.

[Hidden in reply to Hidden]

It's the terminator!

[Hidden in reply to Hidden]

Ha ha...maybe that's what we all need !! Good to have a sense of humour on here.

[PMRpro Ambassador in reply to Hidden]

As volunteers - the Admin people are the paid helps in the charity but they do other things and only do forum stuff when we shout for their assistance

I am quite sure - and rheumies are beginning to agree - that there are several versions of PMR. It is a fact that PMR isn't the disease in its own right, it is the name given to a set of signs and symptoms that tend to have a similar overall effect. There are well recognised alternatives which must be ruled out first before the decision is made that the diagnosis is PMR of the variety we discuss here. Forms of inflammatory arthritis may present with PMR-type symptoms long before joint effects can be identified so a proportion of people may have their diagnosis changed later. Thyroid disorders can cause similar symptoms - and most concerning are a couple of forms of cancer should be ruled out. But the vasculitis that underlies PMR and GCA may have different causes for the inflammatory process - which complicates treatment. Pred works more or less for them all - but beyond that it gets more complex.

[Yellowbluebell in reply to Hidden]

Very brave scoopsxx

[Hidden in reply to Yellowbluebell]

I held my breath for a minute... Then remembered there's lots of miles. Its a compliment... I will stop digging now. 🤢

[Yellowbluebell in reply to Hidden]

We dont run the forum, we are members in our own right because we have pmr but we moderate the site for Health unlocked and pmr/gcauk.

[GlynisE in reply to PMRpro]

Totally agree. Eat and drink what you like. If something flares you up cut it out but I haven’t found anything that makes a difference. I do eat a lot of pineapple though and cherries in season. I do swim once a week though. The thing that does cause a flare is anxiety.

[Hidden in reply to GlynisE]

Hard not to feel anxious with this disease GlynisE

[GlynisE in reply to Hidden]

I know.

[Pirnilla]

The day I started my Pred journey I cut out as much sugar, fast carbs and wheat as I could. I didn't want to gain weight or get the moon face. I started exercising in the gym which I couldn't do in the pain period before diagnosed. Of course I was lucky because I was mainly pain free on Pred. Started on 30 mg though!

Maybe it's because of this or maybe I am lucky because I didn't have so much side effects. Some tapering pain that passed in a few days and some days of fatigue.

I find exercising is really important for my physical and mental strength. Sometimes I have had pain after a tough gym class but that's normal!

I believe my tapering has been a smoother journey due to my diet and way of living but I can't know that for sure.

[MRSKI in reply to Pirnilla]

What exercise do you do ? What diet are you on ? Have you not gained weight on the prednisone ? I don’t wNt to get the moon face !

[PMRpro Ambassador in reply to MRSKI]

Then we recommend cutting carbs in general, especially processed carbs, added sugar and fruit.

You will find lots of threads discussing weight management when on pred. A few lucky people don't gain weight - some lose but they seem usually to be the ones who really don't have a problem with weight in the first place! If you can't find such threads put up one of your own and you will get lots of replies.

[HamishPMR]

I am to the gym for an hour Monday thru Friday and definitely feel better for it. My routine is quite simple with 30 minutes cardio, 15 minutes mat exercises and 15 minutes weights mainly on shoulders. I keep an ongoing record of how I feel morning and night and looking back over these records it is noticeable that often after a bad start I have added "Feel better after gym".

[PMRpro Ambassador in reply to HamishPMR]

I was never able to do any of that - unless Pilates with a lot of adjustment counts as "mat" and I couldn;t even think of that now. But an aquafit class did leave me feeling much better - even in the no pred days.

[Hidden]

Lummy, the very word gym makes me ache all over!!

[HamishPMR in reply to Hidden]

Really you shouldn't think of a gym like that. There are lots of 70 yr olds like me. The thing is that you should start slowly, not 30 minutes cardio, start with 5 minutes. After a week you will feel like doing 10 minutes and so on. Go on, try it!

[Hidden in reply to HamishPMR]

I do agility with my dogs, not as much as I used to as my body protests, also walk with them getting further but more than a mile floors me, prefer to use the limited energy I have doing things I enjoy.

[Noosat]

My diet is no sugar in any form, lots of green vegetables, small amounts of carbs, unprocessed, and small amounts of protein. It works well for me as it keeps my weight manageable and gives me energy. I do, like yesterday, occasionally have a glass of wine. The stretching exercises of yoga, even in modified sitting posture, and some free weight exercises seem to help me. I have tapered to 4mg and this morning feel surprisingly well, with little or no stiffness for the first time in over a year.

[Hidden in reply to Noosat]

Brilliant !!

[Hellyowl]

Exercise has always been key to my recovery. It has helped mentally and physically. Weights, Pilates and walking at different levels at different times depending on health. But never stopped entirely.

[Hidden]

Hi Staplehurst,

Cutting the carbs helped me, in particular eliminating the starchy-carbs. It helped me hugely.

Regarding exercise, the muscles would not allow me to do anything with any speed, but getting out in the fresh air to do some gentle walking or gentle cycling, I think that was good because it stopped my muscles completely atrophying while I had PMR. I wish I'd done more arm and shoulder exercises because now that I am over my PMR, I can tell that my arms are not as they were - they'll need some more work over the months to get them back to normal.

As well as diet and exercise, the other two good things for me were sleep (being very protective of bed time and a good night's sleep) and relaxing (not getting stressed or worked-up).

In summary for me, 5 things were helpful :

(1) no-starch diet,

(2) daily gentle exercise or gentle stretches ,

(3) plenty of sleep,

(4) relaxing/de-stressing and

(5) a little prednisolone in the morning, with the Adcal-D3 a little later in the day

I'm over my PMR now. I've updated my profile and this may very well be my last post. The more experienced people on this forum are very helpful - use their knowledge and follow their tips and advice. That's what I did.

Best wishes to you - good luck in your journey.

[PMRpro Ambassador in reply to Hidden]

Please don't disappear altogether - we do need your help.

That is an excellent points summary of living with PMR well.

[Hidden in reply to Hidden]

I'd probably struggle to find your post Cycle as I'm a newbie. Good advice what you've written. Would you mind answering a few questions ?

1. when were you first diagnosed.

2. what was the mg you started on

3. how long before you started to taper and at what rate.

So happy that you're in remission

Anne

[PMRpro Ambassador in reply to Hidden]

If you click on someone's name it takes you to their profile page where you can see all posts and replies they have written and can scroll through and read them.

[Ebn49]

Hello there! Like others who have posted, I cut the refined carbs drastically as soon as I was diagnosed, although mainly for vanity reasons (I didn't want to get fat around the middle, the one thing the GP was adamant would happen). I haven't given up carbs completely - I still drink wine and occasionally eat savoury crackers or red/brown rice, but smaller amounts than before. I also sometimes have ice cream as a treat. I've been following the guidance in a book I saw recommended on this forum, The Diabetes Weight Loss Cookbook theworks.co.uk/p/healthy-ea... - although I haven't followed it as a weight loss diet. But I have lost weight (around my middle mainly) and feel generally very good. I haven't thought about avoiding the nightshades (I do avoid potatoes though). Maybe that would help, as I do still have some soreness in neck and shoulders from time to time, although that may be down to my tapering. I started at 15mg last July and and currently at 8.5mg, doing a dead slow nearly stop taper since 10mg. Like many people here I was quite active before I started to get what I now believe was the onset of PMR, although that was two years before I was diagnosed. I'm 59 and still do some desk-based freelance work, so I do try to do something every day to avoid being too sedentary. This can vary from a short gym session and a swim, to some gentle yoga or just a stretch and a walk. I'm aiming to slowly build it back up to the point when I'm getting aerobic exercise. At the moment I'm not working hard enough for that, and I know I need to be. Also I need to be doing more weight-bearing exercise (not just swimming or strolling) as I have opted out of bisphosphonates (or 'bone therapy' as it's euphemistically called.) Hope that's useful and good luck with your journey!