Exercise - how much can I do and what types are best?

[Littlejan22]

Exercise?? I am a 56 year old lady pending official diagnosis (tomorrow at Little Aston Spires Hospital) of PMR or GCA (or both) and since developing the symptoms in September last year I have been doing virtually no exercise for fear of more discomfort - that said I have been doing marathon housework and laundry sessions throughout the night since not sleeping above 3 to 4 hours? Please can any fellow sufferers advice me on how much and what is the best exercise? I love Yoga is this allowed? Thanks Janet

[alvertta]

My therapist recommends swimming for GCA people. I swim 3 or 4 times a week for an hour when covid has not closed my pool.

[Purpleazalia]

Hi littlejanIf you scroll down to 'related posts' you will see quite a few previous posts and their replies which may be useful to have a look at whilst you wait for more replies.

I still work full time and find I have little energy for anything else. I'm quite out of condition and housekeeping is carried out in short 10-15 minute sessions with rests in between!

On a good day I tell myself I'm going to start taking a short daily walk or search out some simple chair exercise videos on the Internet, but I haven't yet ...perhaps when I retire later this year!

Lots of people on here mention walking, pilates or yoga as part of their exercise routine. It's a matter of trying it out and starting small (duration and complexity etc), seeing how it goes, and building up very slowly.

Others will be able to give more specific advice and tell you what to search for on the Internet. Good luck with it, and let us know how your appointment goes tomorrow.

[Bcol]

Good morning Littlejan22. Like many of us you have probably been surprised by being diagnosed with an ailment you had never heard of. It is a disease that affects different people in different ways, so what works for some is not the same for others. The chances are though that you will have to change your previous lifestyle due to the effects of the disease and the Prednisolone (steroids) you will be taking. Whether you have PMR &/or GCA and the Steroid dosage you are prescribed will also have an impact on what you are able to do. Others far more qualified and experienced than me will be along later to help and advise on that. Exercise is good for you, but with care. Marathon sessions of anything are probably not the best way to be heading. It may well be a case of doing some housework one day and resting the next. Walking is good but do not push yourself further than your body wants. There is no target or race to do tomorrow more than you did today. It may help if your exercise uses different muscle groups with rest days in between. Could be walk one day, rest a day, some housework, rest a day, swim ( if allowed/possible), rest a day etc. You will need to find what works for you and with always remembering that, assuming it is officially diagnosed, then this is long term chronic illness and there is no rush to achieve possible goals. As Purpleazalia (I do love the fabulous variety of user names we have on this forum) has said there are many posts about exercise, some fairly recent to search for. I will warn you though, the forums search engine is, putting it politely, not the most efficient. You have come to the right place here and do feel free to ask any questions you have, nothing you ask will be regarded as silly.

[PMRpro Ambassador in reply to Bcol]

I think using the word efficient, even qualified, in relation to the search engine here is a travesty!!! Google works better and that isn't saying much ...

[Bcol in reply to PMRpro]

🙂

[Littlejan22 in reply to Bcol]

Thanks just feeling lost and confused never in a million years expected to have this, didn't even know what it was, appreciate it Jan

[Kendrew]

Hi Littlejan22. There are really no rules as to how much exercise you can or can't do other than let your body be your guide. It's important to incorporate some form of exercise into your daily life if at all possible, particularly if you're osteopoenic. However, PMR/GCA can cause you so much fatigue, that there may be days or periods of time when exercise is impossible and rest required. Different people will have their own levels of capability, but even these will fluctuate from week to week or day to day depending on the status of your condition at any given time. Exercise can help to keep you moving, lift your mood, contribute to maintaining healthy blood pressure, lower your risk of developing secondary conditions such as diabetes and help maintain a satisfactory weight, however, it's really important that you pace yourself and don't do more than you're capable of...... Too much and you could cause a flare. This condition can knock the stuffing out of you and leave you with no energy and completely fatigued and at these times , rest is the key.....I can't emphasise that strongly enough!

It doesn't really matter what kind of exercise you do but 'slow & gentle' should be the consideration.....certainly to begin with.......so something like gentle yoga or pilates is often the exercise of choice to begin with for many people. Walking is always good. It's easy to increase the speed, distance and duration depending on your capability at any given time. But as mentioned earlier.....any form of exercise is ok as long as it's not going to overtax your body and aggravate your symptoms.

Only you will know how you feel on any given day and some days you won't feel capable of any physical exertions at all. That's ok. Just listen to your body and be guided by it.

I hope that has helped, and expect others will be along to add more thoughts and considerations on the matter.

[herdysheep in reply to Kendrew]

Great advice. Once you start walking don't go too far to start with. I had quite a while before learning I had gone out too far and still needed to get back. That included much shorter walks than I could do pre pmr! better to do 2 shorter walks well spaced than 1 longer one.

[herdysheep in reply to herdysheep]

oops, sorry just read pmrpro's post below - didn't mean to repeat

[PMRpro Ambassador in reply to herdysheep]

What does it matter? Reinforcement!

[herdysheep in reply to PMRpro]

Reinforcement - fine. Not so fine - me not reading things properly. I used to be a stickler for that - something else going with age?

[PMRpro Ambassador in reply to herdysheep]

It is more difficult on a phone if that is what you are using. I use a small laptop - I don;t have a phone but don't fancy using one to read the amount I do.

[herdysheep in reply to PMRpro]

No excuse for me, sadly. Was using pc with full screen!

[PMRpro Ambassador in reply to herdysheep]

[Littlejan22 in reply to Kendrew]

Thanks all and this has made me feel more understanding of the illness, totally get the fatigue part, I seem to sleep way more than before thanks Janet x

[Littlejan22 in reply to Littlejan22]

PS I am using the mac laptop and my phone when I am on the go x

[SnazzyD]

Hello. As others have said, no “marathon “ anything be it housework or exercise is not good. Try a little of something first and see how you go. The effect of steroids can build up so one level of strain on the muscles is ok for a while but then not. Listen to your body though don’t respond in kind to any mad bursts of energy that can come from the steroids; that’s not really real. I was 54 and very fit before GCA popped up but I stuck to walking. Too much stretching and strain injured my muscles quickly, even carrying a bucket of water.

[Constance13 in reply to SnazzyD]

"carrying a bucket of water".😂😂

Coooo - it must be five years since I've done such a thing!!

[Littlejan22 in reply to SnazzyD]

Thanks listening more to my body now x

[PMRpro Ambassador]

The best exercise? Something you like doing and, above all, can manage without payback. Generally walking is popular - but even then start with a short walk you know you can manage without feeling exhausted or sore the next day. If you don't know or it is a long time since you walked, start with 5 mins out, 5 mins back home. Rest and assess the next day - you don't have to be inactive but do something using different muscles. If that was OK, next day add a minute out, which adds a minute back. Always have a rest day between exercise days to assess how your body coped. Once you get to the time you want OR the time that leaves you feeling it next day stop adding time and just keep doing the same until you feel you have improved - maybe you are doing the same distance faster or any uphill bits are easier. Eventually you will feel up to doing it more than on alternate days but rest days remain important to allow your muscles to recover.

And as someone else has said - DON'T do marathons of anything. Even with walking, you may find it better to do 2 shorter sessions at first - I could walk much further in a day if we walked to a restaurant, had a long leisurely lunch and then walked home.

With PMR swimming may pose problems - I really couldn't manage it because of the shoulders. I did do aquafit at the same level as everyone else - but I did the same as with walking initially, I did everything at a low intensity at first and left things I found too difficult or tiring and even cut sessions short if I started to feel tired. It does you no good to push through fatigue - it makes it worse and it is very embarrassing when you need someone to rescue you because you hit the brick wall of fatigue where you can't move.

You might find the links in this post useful and interesting:

healthunlocked.com/pmrgcauk......

[Littlejan22 in reply to PMRpro]

Promised myself to slow down last week, and I am feeling better for it thanks x

[piglette]

My gosh, I got to the point where I could hardly get out of bed let alone start doing any housework at all, let alone marathon ones, even during the day. I am amazed they have left a possible diagnosis of GCA nearly four months. I thought it was supposed to be treated like heart problems or cancer. If you have got PMR it is life changing and you will need to take things slowly and build yourself up after you start steroids.

[Littlejan22 in reply to piglette]

You seem to really understand this condition, thankful for the advice x

[Littlejan22 in reply to piglette]

Hi officially diagnosed on 11.1 as just PMR low suspicion of GCA which is good news, just need to learn to manage diet, sleep and the condition in general that I had never heard of until the symptoms started in October, so much to learn I have a book now on survival of PMR plan to focus on it now, really appreciate all your support

[piglette in reply to Littlejan22]

I got an app called mynetdiary which shows the various vitamins etc I have eaten. I suppose it depends how interested you are in diet. It is quite useful in planning my menus ahead too and the basic version is FREE. I am a bit of a nerd on nutrition though.

[HeronNS]

It's important to maintain as much as possible the level of activity you enjoyed before, however be aware that pred can weaken muscles so you may be more prone to injury. I believe that moderate exercise helps prevent a lot of the potential muscle -weakening effects of pred. But as the others have said if you have lost fitness while waiting for diagnosis start slowly and build up sensibly! Not being athletic myself my go-to until recently has been walking and I hope it will be again. Plus various physio exercises, tai chi and a little yoga.

[Littlejan22 in reply to HeronNS]

Thank you x

[Janstr]

When I was first diagnosed & asked the same question of my rheumatologist, he said “Listen to your body” . This has proved to be very good advice. If you start to feel tired doing something, don’t persevere as you are possibly over doing it. You’ll gradually be able to do more & more.

[Littlejan22 in reply to Janstr]

Thank you x

[PMRpro Ambassador]

This was posted on the lupus forum yesterday:"NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance"

Now they say that "patients should be encouraged to remain within their “energy envelope” so as not to worsen their symptoms,"

PMR and CFS have some things in common - especially the fatigue aspect. Overdoing it and going past that "energy envelope" can result in a long period where the patient struggles to get back to where they were before. Prevention is better than cure ...

meassociation.org.uk/2020/1...

[Bcol in reply to PMRpro]

Thanks for this, it makes interesting reading and I'm in full agreement with it.

[piglette]

I love swimming but Covid has put paid to that for a while.