Hello Everyone, I’m on week 2 of Dorsetlady’s tapering plan and all is going well. In the past I have attempted to resume my light weights exercise and have had significant pain the next day and so have stopped. Feeling really good this week, I decided to put my foot back in the pond and embarked on a really small round of weights, just 4kgs, 2 x reps of 10 and just 2 different exercises. This is significantly less that what I used to do before PMR, but always, if I had left it for a while, I would experience stiffness for a couple of days afterwards. I’m having trouble distinguishing between this normal stiffness with new exercise and something that might be caused by PMR, since what I am doing is really not that much. Does anyone know if PMR means that weights are out? I need to do some kind of resistant exercise to maintain muscle strength, and walking is not enough. Hope you are all surviving the fun and games in Parliament up there.
Light weight training and PMR: Hello Everyone, I’m... - PMRGCAuk
You are probably suffering delayed onset muscle soreness. OTC painkillers can help and if they do you know it's not the PMR. Perhaps spread the weights across the day so you don't do 20 repetitive movements in a row.
What a great idea! I’ve never heard of OTC and I don’t know what painkillers they might be, but I can find out! Very encouraging response, thanks Poopadoop!
Over the counter....sorry we just get into the short hand and it can get confusing. Paracetamol will usually do it. It's just a question of building muscle slowly and you are on the right track with smaller weights. I also use a stretch band several times a day to slowly stretch the muscles.
Oh, ok ... thanks. Yes, paracetamol. I never need to take it for stiffness under weights circumstances, just enjoy the idea of muscles gaining strength, but now with PMR, I am more cautious. Xx
I’m half way through a 6 week pulmonary rehabilitation course at a local NHS hospital. Although the course is primarily to help improve my breathing and stamina ( I have pulmonary hypertension
as one of my chronic conditions) I’ve been pleasantly surprised at how my body has responded to the exercises. I had an assessment with senior physio before starting and we discussed my multiple conditions including PMR. I do bicep curls with just 1kg weights but not the lateral exercises as that seems to aggravate the shoulder muscles. I do 10 reps x2. The aim
Is to build up the weights slowly as well as increase time and intensity on all the other exercises eg exercise bike, walking treadmill and using the step. The sessions are held twice weekly.
Previously when I tried attending an exercise class, I had a flare up of PMR symptoms and tendonitis in both hands and forearms. So perhaps it depends on how active the PMR symptoms are at the time....
Thank you. I know weights are really important and that is why I persevere. Just wondering how to tell if it’s more severe with this horrible condition. I think I’ll progress slowly with weights, and see.
You have hit the problem that many of us do when we were very active and exercised regularly before PMR/ GCA and how to cope with doing the exercise we need but in the ' New Normal' , and often what we think of as nothing at all based on the ' Old Rules' is either inappropriate or too much with your current condition.
Weights , are not always essential or appropriate to exercising with Chronic Pain Conditions and can often increase the amount of pain or damage we experience while exercising , provoke a warning if a F!are , and actually reduce the amount of positive work we can do to maintain our muscle strength and mass.
While taking steroids long term your collagen receptors are effected and your tendons and ligaments can become more lax , so weight related exercises can actually increase this laxity and cause more pain. The same is true for certain other exercises that cause excess pressure on the joints from repetitive motion beyond that which your current condition can cope with , like running , tennis , horse riding , biking outdoors , aerobics and certain types of yoga or team contact sports.
It is also something that we all have to accept that our energy levels have reduced and we need to do less exercise in one session , take rests in classes , reduce repetitions and not take part in full classes or certain exercises that we know overburden or overextend the joints that our PMR/ GCA flares in the most. This doesn't mean you are doing nothing ( although I know at first it feels like that when you have been an active exerciser) but that you adapt what you do and how you do it to prevent the tiredness, flares, or pain popping its head up after we have done too much and then stopping us doing exercise each day at a beneficial level.
Some of the best exercises to maintain strength , flexibility and mass are Pilates , Tai Chi, and moderate swimming and Water exercises.
Aqua exercise has double the resistance with far less pressure on the joints which makes it ideal for Chronic Conditions that mean you cannot exercise so intensely in a gym or outdoor enviroment. You can add in equipment like pool noodles and floats , and in time flippers for hands and feet for extra resustance. The warm water of the pool also helps keep the muscles warm and flexible.
All exercises you do should also be built up in tiny increments , not so that you feel you have pushed to get further , but that repetitions on a lower level begin to feel so easy that it's worth adding just another one , seeing you feel fine with it and then adding another. Hydrating constantly during exercise and before and after it and taking more time to slowly warm up with joint rotations and cool down with rotations in a shower afterwards is even more essential to your exercise regime than it has ever been before.
If the gym is for you learning resistance exercises using Yoga Balls and resistance bands of various sizes is far better than using weights to prevent tendon and ligament stretch pain. Using the cycle is also good closed knit training , it's not the action of cycling itself that is bad for Chronic Pain Issues but the outdoor enviroment and terrain that makes cycling outdoors hard .
Walking with Nordic Poles and increasing the length and terrain also gives a full body workout and improves muscle strength without causing extended pressure on the joints.
The key to it all is to be aware that you exercise ability has altered and accept this change and find a balance of exercises in much shorter , less intensive sessions so that you can maintain activity each day of a regular level , rather than pushing it and making your physical therapy become erratic.
Hope this helps .
Thanks Blearyeyed, it does help, a lot! I’m not actually pushing myself, quite the opposite, but just need to continue to maintain strength and flexibility and fitness. I will take your words to heart, thanks again.
Just seen you are 9mths in so could be at too lower dose of pred and be in a flare.
I am into my 4th year and up to a few months ago, everytime I did a repetitive action I literally had arm shakes for up to 5hours and then couldn't move them for a couple of days. It did get better I finally spent half an hour cutting with clippers and didn't get the shakes around May. They did come back a couple of weeks ago when I painted one side of the garden gate.
You have to be careful about ligaments as bee says. I had housemaids knee in previously injured knee in year 1 and 2, and golfers elbow last year by repetitive action throwing the ball for the dog. This year I walked on a sideways slope for 5 mins in trainers instead of walking boots and overstretched tendons in my ankle which are still dodgy. I now always build in a rest day when I get the aches after activity.
I do 30mins of stretches for my shoulders, arms, legs and back before I get out of bed and just to ease the stiffness. I use a narrow stretch band which I use to stretch legs and arms. It about being gently and doing different muscle groups so you don't get too repetitive day after day.
Thanks for your interest. Fortunately I am not in pain. I have low level stiffness for a couple of days after weights. I am hopeful that I am not tapering too quickly, I guess I’ll find out in a couple more weeks when it’s time to drop 1/2mg. Doing the slow DorsetLady taper ... fingers crossed.
Not sure how long you have up weights for...but I dropped from my usual 4kg for bicep curls to 1kg and am now at 1.5kg. I used to be at 8kg for chest press but can only manage 2.5 right now. Any more, I get pain in shoulder cuffs and forearms.
It's important to keep our muscles from wasting away. But please listen to your body and adapt accordingly. For what seemed like the longest time I simply reverted to yoga and stretching before slowly moving to pilates.
We will all have different thresholds. I'm sure you will find yours!
Thank you for encouragement. I’ve been doing weights forever ... mostly 6kg but has varied. Yoga is difficult but I am persisting. It’s great encouragement to hear that others are doing weights and working it out. Thanks for your input.
Do a half session of yoga.
Hi. It’s not just muscle strength, but weight training (even very light weights) is also an important contributor to bone density. Some of us have been very lucky coming in to PMR with a high level of fitness and have been able to maintain it. Others haven’t and have had a long slow road back. That said, I’m still not sure whether a recent spate of muscle injuries (all resolved) were due to Pred, or doing things an almost 80 year old body shouldn’t attempt. The trick seems to be to find the level you can cope with, and then very gradually increase the weight and intensity, although not both at the same time. As with all things PMR it’s essential to listen to your own body and adjust accordingly.
Thank you. My question is really around whether or not we are more sensitive to weight training than we were before PMR. I have had years of weights and used to be able to read the muscle response. I am confused now, especially since I am tapering. Is it the normal twinges or is it the PMR? With high doses of pred there were few reactions to training, but with the taper, it’s more prevalent. I have read on here about pred withdrawal and whether we are feeling that or PMR, so it can be a bit difficult to work out what is pulling the strings. Thanks everyone, for contributing your experiences.
What we are more sensitive to is - repetitive exercise. The muscles take longer to recover than pre PMR - so as others have suggested - lower weights, fewer repetitions and give yourself a day off in between sessions.
You may have been able to take these in your stride pre your illness, but you now have to build up again , SLOWLY! Just imagine you are starting again, and build gradually - it will come, but because of PMR your body is much more sensitive to any changes.
As for not noticing problems on the higher doses - that's because you had all that extra cortisol sloshing around your body - now you are getting lower - there is very little 'spare' and if you aren't below the physiological level (around 7.5mg Pred) your own adrenals won't be adding anything extra to the mix to get you through the activity.
It is my experience that weight ( intensity) is the problem, not repetition. Every sport, every activity has repetitions. You need to pay attention to intensity to not injure your muscles. For example, at the moment I am trying to recover my strength and flexibility in my shoulder. I use water bottle and put in 250-300ml in and do 50-100 repetitions, several sets. Why? To recover from muscle injury one needs very gentle exercise that would increase blood flow to the muscle and speed up recovery without causing additional stress (damage) to the muscles.
With PMR, our muscles are "injured" and starving for oxygen and nutrition. Gentle exercise with LOTS of repetition is the way to go.
Could you please explain more about that ... what is cortisol and the 7.5mg level. When do our own adrenals take over and how do we know?
Have a read of this then if you have more questions please ask...
But more info -
Once you have been on steroids for more than 3 weeks and at a dose higher than 7.5mg (which is equivalent to normal cortisol production by your Adrenals- called the physiological level) they temporary stop working because the artificial cortisol in your body (Pred) means they don’t have to.
That’s means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena!
You tell medical people you are on steroids so they don’t suddenly stop them - that could cause a steroid insufficiency problem and your body would really struggle.
That why when we get low levels (around 7.5mg) we need to reduce very slowly to nudge the adrenals into working again.
There is no need for them to work until you get below the level that your body would normally produce cortisol.
For the majority of people they do start working again - although it’s not like switching a light on - one day they’re asleep next day they’re awake! It takes a little while to recover all function. But there is a test (Synacthen test) to check if they are capable of working - not if they actually are, just if they are capable of doing so.
Hi on my recent visit to rheumatologist he said now the thinking is that we produce 3 mg of cortisol naturally not 7.5 mg have you heard this?.
No - From what I’ve seen the figures quoted are between approx to 5- 10 mg Pred which is why we usually plump for the average of 7.5mg. Not sure how up to date the figures are though. But of course, they do vary from person to person as well as through the day - so he may be correct. Would be interesting to know where his information came from.
Actually I didn’t feel mine were really working above about 3mg - so he may have something!
Hi yes thanks for replying how could you tell the difference going below 3 mg?? Am struggling at the moment a bit on 5 mg but 2 paracetamol make me feel so much better so cam resisting increasing yet again!!
From about 6mg down to 3mg I got random bouts of fatigue - very frustrating because they didn’t relate to any extra activity or stress - or anything!
Fortunately I’d never suffered from fatigue before - apart from pre diagnosis - so I didn’t really understand at the time why it suddenly hit me.
Very slow taper (0.5mg every 5 or so weeks, maybe longer sometimes) and no other symptoms whatsoever so know it wasn’t GCA related (didn’t have PMR), but once I reached 3mg all fatigue disappeared. So I can only assume it was the adrenals.
As for you, just make sure it doesn’t get any worse, you may find even just an increase of 0.5mg might make the difference.
Cortisol and pred are not the same. The body normally makes about 30mg of cortisol per day though measurements of 300mg have been measured in patients undergoing surgery. 30mg of cortisol is approximately equivalent to 7.5mg of prednisone.
Think of cortisol as nature’s built-in alarm system. It’s your body’s main stress hormone. It works with certain parts of your brain to control your mood, motivation, and fear.
Your adrenal glands -- triangle-shaped organs at the top of your kidneys -- make cortisol.
It’s best known for helping fuel your body’s “fight-or-flight” instinct in a crisis, but cortisol plays an important role in a number of things your body does.
Prednisolone replaces the normal amount of cortisol made around 2am as more is needed at a higher level to reduce inflammation. Two weeks at high doses, your adrenals have nothing to do, so they go to sleep.
You then don't have any 'fight of flight' which is why you try to avoid stress as much as possible. That only comes into play when you adrenals are working and can quickly produce more when needed.
At about 7.5mg and below, (although some Endocrinologists like it lower) you can have a Synacthen test to see if they have woken up.
You always have to carry your Blue Steriod Warning card, for two years after you have stopped taking pred. The reason why, it can up up to one year for your adrenal glands to become fully functional.
That is the best answer I have ever had. Thank you for explaining this to me. So do you think that at 4.5mg pred my adrenal might be kicking in? I have been on this for about 3 months. Struggling to reduce but now on Dorsetlady’s tapering plan. Hopefully I’ll manage ... what do you think about my cortisols?
They should be, but sometimes they can be a bit sluggish. That’s why you need to reduce really slowly - it’s helps the adrenals as well as enabling you to taper off the Pred (PMR permitting of course).
See my answer above as well.
Does anyone on the panel wear a Medic Alert bracelet as it would be difficult to carry a blue steroid card all the time?
My chemist gave me 4 one for my purse and the other for 2 handbags - so one spare, which I covered in a little plastic case and put on my key ring.
I could not wear a bracelet, never good stand anything jangling - watch OK, bracelets not for me. I also looked at the necklace type, but the only one I liked.......too pricey.
I could not resist this, given to me by a Support Group leader many moons ago.
EXERCISE FOR PEOPLE OVER 50
Begin by standing on a comfortable surface, where you have plenty of room at each side. With a 5-lb potato bag in each hand, extend your arms straight out from your sides and hold them there as long as you can. Try to reach a full minute, and then relax.
Each day you'll find that you can hold this position for just a bit longer. After a couple of weeks, move up to 10-lb potato bags.
Then try 50-lb potato bags and then eventually try to get to where you can lift a 100-lb potato bag in each hand and hold your arms straight for more than a full minute. (I'm at this level.)
After you feel confident at that level, put a potato in each bag.
Sorry if I have wasted a few precious minutes. 😊
🤣🤣🤣 my back couldn't take the tatties nevermind my arms.
I tried to help my 84yr old friend by grabbing her new boxed tiny microwave and carrying it 25yds from my car to her house and then installed it. I had severe arm and back pain for 2 weeks. I think it weighed about 10lbs and I rested 3 times on the garden wall on the way in.
The exercises recommended relate more to the ones I did at 17yrs old which included having 30lb medicine balls dropped on your tensed stomach as well as holding it in front of your for as long as possible. 😜🤪🥵😠
I have also started adding excercise and weights back to my routine. And I have the same trouble. I am trying to take it slow. I want back to the beginning on the weight machines and am not pushing hard. I go to the first setting that is not easy but also not hard. I too have soreness the next day or two. Yes, it is hard to tell... is it the prednisone taper? Is it regular soreness from being sedentary for the past several months? Is it the PMR reacting to the lower dose. I don’t have answers yet! I try to take it easy, allow my body to rest and recover after by only walking or stretching until the soreness is gone and the. I try again. I hope one day I will build my strength back up and am just thankful that I don’t have the debilitating pain I had before treatment!
Weights aren't out altogether - but starting at 4kg with PMR is!
I'd suggest starting at a much lower level and, as already suggested, don't do all the reps at once. Stretch bands, starting with less resistance would be good too. But you must build up very slowly: do a day with lower weights and a fewer reps. Have a rest day and see if that was OK. If it was add a SMALL amount of weight and try again.
I actually found that aquafit was a good start - the resistance of the water makes it easy not start very low as long as you are careful. More is not always better ...
I didn’t start at 4kg ... I’m not completely stupid! I dropped back from 6kg to 4, a considerable reduction from what my body has been used to.
But it is still too much for a PMR-ravaged body to cope with. We have a couple of athletes who have had PMR for some years and kept on their exercise programme - but say they had to drop to 50% or less of what they had been doing to start with. Even after re-training (which is what it amounts to) they still found they had to accept about 70% of their previous peak for a long time.
No-one is suggesting you stop altogether, but I am suggesting that you need to start from a much lower level and build up over perhaps a couple of months to where you were if you can - no guarantees there either I fear.