PMR

[rose1962]

Hi, I'm new and I have just been diagnosed with Polymyalgia Rheumatica and have started a course of Prednisolone, 15mg as well as continuing taking amitriptyline, 20mg per day. I am 54 and up until this last 8 months have been very active. It has taken me 8 months to get this diagnosis. Can anyone recommend a good exercise regime and healthy eating plan. My pain centres around my my upper thighs front and back, across my buttocks, into my groin area, both of my upper arms hurt as well. I am seeing a physiotherapist later in the week. I would be grateful for any advise.

[PMRpro Ambassador]

Welcome to our happy band - the club no-one wants to join! But we're quite harmless really

First of all - make sure your physio is aware of PMR and the problems it can cause. Very many of them have no idea at all - even when they claim they have. Some have been known to ask the patient repeatedly why they are on pred and one even told someone she needed to get off pred!!!!! Physio per se will not help PMR - so if you can't cope with it it isn't the end of the world.

Despite the pred the underlying cause of the PMR, an autoimmune disorder causing vasculitis, continues to chug along in the background. It leaves your muscle intolerant of acute exercise. That means any exercises that require repeated actions will leave your muscles suffering from delayed onset muscle soreness and it can take days to recover. Exercise is good - but it MUST be gentle and within what you personally can manage. Walking is good - not hiking up mountains! But be careful - it is all too easy to set off on a walk and hit the brick wall of fatigue! Do 2 or 3 short walks rather than 1 long one at first until you find your limits. Even massage can cause a flare of pain if it is too enthusiastic.

Diet - a low carb diet has helped many of us either lose pred associated weight or avoid putting it on in the first place. It also helps some with the PMR as sugar and white carbs are felt to be inflammatory substances - and we have too much of that in the first place!

Why have you been left on amitriptyline? It does nothing for PMR - I assume your GP assumed it was fibromyalgia did they? It is possible the pain in your groin is a sign of bursitis, usually trochanteric bursitis. I find that steroid injections deals with mine far better than oral pred - it is common in PMR and is regarded as part of the clinical picture.

And final instruction for now: DO NOT GO RUSHING AROUND DOING WHAT YOU COULDN'T DO FOR THE LAST 8 MONTHS!!!!!! You will hurt all over and feel awful - and think the pred is doing nothing. You have to do your bit in chronic illness by pacing:

healthunlocked.com/pmrgcauk...

[Hidden]

Hi Rose

Welcome to our group, you'll find a lot of help & guidance here. Your story sounds very familiar however, but the thought of Physio fills me with dread!

Our wonderful PMRpro has given you lots of excellent advice & information, I was a similar age to you when diagnosed & although l have no proof, l believe mine was triggered by over zealous physiotherapy & that's an understatement!

I've recently cut down on sugar & keep a lowish carbohydrates diet but I'm not over zealous, however it does help as steroids love to lay down fat in places we'd prefer not to have it!

Reserve you newly found energy from the Prednisolone & as PMRpro says take two walks rather than one long one! My lovely husband would take me to Garden Centres we have a walk round, have a coffee & then if I felt up to it, I'd go around again; then M&S built the largest store in Europe very close to us & I did all my walking around there when it was cold or raining!

A recommended read is Kate Gilbert's Book on GCA/PMR a Survivors Guide

My Very Best Wishes 💐

Mrs N

[piglette]

Hi Rose, I am sorry you have been diagnosed with PMR. The others have given some excellent advice. Particularly be careful of physios who think they know all about PMR and don't! I go swimming, which I love, but weight bearing exercise such as walking is supposed to be better.

Not exactly healthy eating, but have you been told to take vit D with calcium by your doctor? It is recommended as a side effect of steroids can affect bone density. Also at some point soon you should be offered a Dexascan to check your bone density.

I do hope the pred had the magical effect it had for me.

[Rugger]

I was diagnosed with PMR in May 2016 and had been going to a PIlates class for 8 years. I missed 6 months from April to September, but then resumed. So I continue with the classes but miss out one or two of the moves which involve repetitive movements - always listening to my body. You may know that Pilates works on core muscles and balance and is more gentle than some other forms of 'exercise'. I saw a physio last summer who just asked me questions about what I could and couldn't do and told me I was doing all the right things.....!

Agree entirely with piglette about calcium and vitamin D and a DEXA scan. The first GP I saw failed to mention bone health and so 9 months down the line a blood test showed a low vitamin D level in spite of my having taken an OTC supplement and a DEXA scan revealed I have osteoporosis. I'll never know if I had it before the PMR, but the pred and PPI won't have helped and may even have caused it.

I try to walk for 30 minutes a day, but sometimes it's only 15 minutes - again, it depends on how I am each day.

I eat what I consider to be a healthy diet - virtually no added sugar and small portions of carbs, with a modest amount of protein foods and 5-a-day or more veg and fruit. I check my weight every month.

Take care and pace yourself. You will learn lots from this site, as I have done.

[rose1962]

Thank you all for your very very helpful advice. I have a GP appointment next week so I will ask about continuing with the amitriptyline as it hasn't ever really helped with pain control., the only thing it seems to have done is bloat me out! I will also ask about vitamin D and a Dexa Scan bursitis as this is a very sore area. I have a dog so i am a keen walker but I have been pacing myself, no loner the hour and a half walks. If anyone has any advise about the pain i get in my arms and how best to deal with it i would be grateful, trying to find a comfotable position to sleep at night is impossible!!

Thank you all.

[PMRpro Ambassador in reply to rose1962]

Don't stop the amitriptyline overnight - taper it off to avoid the withdrawal symptoms. That no doubt no-one told you about!

If you are lucky the pain will fade slowly - it took me a few months for most of the worst pain to go away but it did go.

[Patience_1]

Hello Rose, sorry to hear you have joined the club. It's a long haul and bound to be discouraging at times, but I've found this forum so helpful; it's good to be in touch with people who understand exactly what I'm dealing with, and there's great advice to be had.

I've been suffering since about February 2016, diagnosed and put on pred in September 2017. Previously, having had dogs all my life, I would walk lots; my other exercise was swimming and using a nordic walker. Now, I still dog-walk but in shorter bursts, and I've ditched the swimming as it isn't weight-bearing exercise and that's what really helps in maintaining good bone density. I use my nordic walker very sparingly, as I find I get fatigued easily, and I don't want to overdo things.

A while back I posted on this forum asking about the benefits of Tai Chi, something I'd never tried before, and got lots of helpful replies encouraging me to try. Having tried a local class, I'm now practising exercises from a DVD programme in the comfort of my home, and I'd echo what others told me: it helps with toning, balance and mobility/agility, and is gentle and doesn't over-strain muscles. It may not shed weight like jogging, but I think it has lots of benefits, including relaxation.

Now, as to diet, I really struggle as I love my carbs - but I know they're not good for me! So, I limit them as much as possible, and incorporate all sorts of seeds as much as possible, to slow down absorption. Often I use pulses, make mash out of beans, etc; and sometimes I'm really good and just have protein and green veg - and I find that gets easier in the warmer months. If you check out the list of other forums linked to Health Unlocked, there's a health eating group that you may find useful.

Good luck with your progress.