Fitness

[Narcc]

I was diagnosed with polymyalgia in March and put on prednisolone. I am struggling to get back to fitness , lack stamina and get out of breath very quickly. Has anyone got back to fitness? how?

[DorsetLady PMRGCAuk volunteer]

Now you have written you can see related posts - and this -

healthunlocked.com/pmrgcauk...

[Understanding22]

I am with you on this. I have been on pred for 3 years and am now v unfit- but not just due to pred. I plan to start v gently as I am lacking in energy a lot. .

[PMRpro Ambassador]

Not usually in the first 6 months of the illness. The pred has cured nothing - it is combatting the inflammation created every morning by the underlying autoimmune disorder that causes PMR and so relieving the symptoms. That underlying disorder is continuing in the background, attacking your body tissues and in some ways making you feel unwell and fluey. Would you expect to be able to get fit while actually suffering from flu? It is particularly bad in the first year or so of PMR though in general it does reduce in activity over time - but that isn't in days, it is months, sometimes even years.

In the early stages of PMR your best approach is to rest and pace yourself so you don't overdo things which can cause a flare and make you worse not better. In some ways it is similar to the fatigue and malaise experienced in ME/CFS and they have recently realised their graded exercise approach to ME actually made patients worse, apparently causing long lasting damage. You cannnot do exercise regimes without risk - but identifying your limits and sticking to them doing walking and possibly aquafit AT YOUR LEVEL may keep you from deteriorating too much, Never try to keep up with others - learn your pace and stick to it.

[Koalajane]

I walk and I started walking 6 months after diagnosis. I started walking and have built it up to doing 13,000 steps a day. But I walk and then have a rest, so am able to go out a few times a day to walk. I also walk to help keep my sugars low.

[yogabonnie]

Before PMR I was doing triathlons and biking quite a bit. that all stopped..but I continued teacher yoga albeit more gently and walking. It does take some time to gain strength again. In a few months try lifting 1lb -3lb weights.. to keep your bones strong. and most of all read about the SPOON THEORY *search on site. You have to pick your battles. At first taking a shower exhausted me!! so I started taking them every other day so I could do other things. Be patient with yourself. Rest when you have to. I am down to 1mg after years.. and now lifting weights still only 3# and swimming and walking a lot! Feel good! I am 77 next month. Started this business 5 years ago. BUT felt better early on. So do not despair when you see that yearly number!! Best of luck to you. Ask all the questions you like. this forum is AMAZING!!!!

[PMRpro Ambassador in reply to yogabonnie]

healthunlocked.com/pmrgcauk......

This links includes the Spoon Theory as well as other Very Useful Information ...

[agingfeminist]

we are all different but some of us really can't exercise. And all of us need to be very careful and gentle with any form of exercise. I got severe steroid induced muscle myopahty at high doses of pred. (muscles rapidly dissolved) and exercise is disastrous but I do keep moving (even if only pottering round my home with a duster for a few minute or doing some cooking). Someone on this forum recommended qigong and I can manage most of this video (only 3-4 minutes at the time).

youtube.com/watch?v=cwlvTcW...(Not working as expected?)

Moving is really important...try to move arms and legs in some way every hour (even just standing up and stretching arms up)

and do follow the expert advice here about pacing

[Merryfield]

wouldn’t say i am back to fitness but am working on balance and strengthening arms, legs and abs. and i walk a little. balance seemed to have improved the fastest. can’t miss even a few weeks without losing ground. do what you can without pain or breathlessness. had yr heart checked out?

[GrandmaPirate]

I am 76, 3 years of PMR, wasautomaat on prednisolone 20 mg/day, biedt and hiked a lot before PMR. I used to do pilates and although I diminished somewhat I never stopped pilates. In fact it became a way to monitor my progress in movement capabilities while tapering. Now I am on pred. 1 mg/day, try to do 14000 steps in several walks with my dog, love my bicycle again (25-30 km/ride, 2-3 times a week) and every day (except sunday) 50 minutes of pilates. It strengthens the muscles and helps me to monitor e.g. a flare. Once you make exercise a habitat, you will discover how it can help you to overcome tiredness and stifness. I have to tell you that I am on DHEA 4mg/day with helps to cycle uphill or against the wind .

[Paul76]

I used to go walking every day but now not so much. I’m slowly realising that I have to rest. I do go to aqua fit 3 times a week and find this really helpful.

[Bessyg]

Hello Narcc. I have been going to hydrotherapy and exercise with my pysio weekly and this is helping with my fatigue and fitness levels

I have only been doing this for about 4 weeks but noticing the difference already.

[pmr_nikola]

It is possible. Best to start as soon as possible the same activity that you have done before at very low intensity level and short duration at the beginning. Be patient. Also keep in mind that we are all different and you have to find YOUR way to get back to fitness. Here is what I have done:

1.Stretching should be done every day, preferably combine with walking to warm up/cool down.

2. Walking/swimming/biking or anything that floats your boat is fine as long as you do it at low intensity. After few weeks you will get better understanding what you can or cannot do and then you can adjust your exercise plans accordingly. This will in a long run help your recovery and take care of being out of breath. Increase time/distance and maybe in a year you will be able to do the same distance as before PMR albeit at the lower intensity level.

3.Avoid strength training because muscle recovery is very hard while on prednisone. Prednisone changes metabolic processes on how proteins are processed, and they are essential in muscle recovery.

I kept real time record and posted progress over several years at sister -site. Here is the link if you care to read...

patient.info/forums/discuss...

[PMRpro Ambassador in reply to pmr_nikola]

That brought back some memories!!!!

[pmr_nikola in reply to PMRpro]

hopefully good ones

[PMRpro Ambassador in reply to pmr_nikola]

Lot of famliar names ...

[pmr_nikola]

I was trying to upload sample of my exercise log , screen shot in jpg file format, but it did not work. Not sure why. It would show how often and how long I exercise 3-4x per week, alternating biking in the mountains and swimming. My biking session is usually 80-90 minutes and swimming is 2.5Km in 60-65min ( 100 laps in 25m pool). I wish I can also post sample of an exercise, because I record it with polar HR monitor which tracks speed, altitude, distance and HR every 5 sec so that I can analyze progress on my PC.

the error is:

"There was a problem. Please refresh the page and try again." very helpful

[DorsetLady PMRGCAuk volunteer in reply to pmr_nikola]

Doesn’t always like jpg.format - think it might be which device you used for screen shot…

..but agree it is a pain.

You could always ask the help desk…😳

[pmr_nikola in reply to DorsetLady]

Thanks for comments... I have actually tried png and jpg format and neither of them worked. Those are the most common image formats. Something else is going wrong , will try help desk.

[DorsetLady PMRGCAuk volunteer in reply to pmr_nikola]

If you do get anything like a sensible answer please let me know - not just for personal reasons, but for my post about HU issues and how we can help ourselves before contacting help desk...

Thanks.

on a similar subject, was with son this morning - and we discussed my issues the other day... and we found out that HU platform doesn't like VPN - so maybe something, or possibly nothing at all, to do with that?

[pmr_nikola in reply to DorsetLady]

Thanks for the suggestion. I do use VPN. I just tested posting image without VPN and got the same error.

Edit: I was trying to add image in this thread, but could not. However I started different post and I had no problem posting image there.

Here is the link to the post..

healthunlocked.com/pmrgcauk...

[pmr_nikola in reply to DorsetLady]

Just to get back to you on image upload... I have contacted help desk and provided them with detailed information and they were able to replicate the problem, so it is a bug.

[DorsetLady PMRGCAuk volunteer in reply to pmr_nikola]

Thanks for reply...gal you've got it sorted....