Feeling Miserable

Thank you Anhaga. My doctor hasn't suggested using a very slow tapering plan just 1mg a month until I get to 6mg then I'm due to see him again. Should I try this and see how I go or would you recommend going slower?

I think 1 mg a month is fine as long as you don't feel any ill effects, like steroid withdrawal.  That's avoided to a large extent, maybe not always completely, by those of us who follow the dead slow method.  You still get down by 1 mg per month using 4 day start stop or six weeks with full 6 day start stop.

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

I found this method helpful after I hit 10, when I had a bit of trouble getting to 9, and it's been great helping me reduce to 3, maybe (still working on it) 2.5.  It's taken about a year.

Well that's what the doctor seems to think it is! I haven't any pain in my wrist as such, it's mainly in my fingers which are so stiff in the mornin I can barely move them. However the worst part is the tingling and numbness which is typical of carpal tunnel apparently. Also I've read that if you have PMR or Diabetes you are more likely to get it but thank you anyway.

I hope the doctor can help you on this.  Mine was my entire hand too, but really hard to bend my wrist.  Once I immobilized it, it was okay, but mostly it was that I need a bit more prednisone, then the pain went away.  Keep us posted.  

I had this pain too and such stiffness in my fingers I used to wake up with my hand in a claw which I couldn't open for some hours.  I needed 2 more mg of pred as I had been coming down too fast so from 13 went up to 15.  After that, all the hand symptoms disappeared. I can only taper half mg a month to avoid fatigue and I am pain free.

 

Will do

That's interesting but the stiffness in my fingers first thing is the opposite to what you experienced in that I can't bend my fingers at all, they gradually loosen up after about an hour.  Did you experience the tingling and numbess too.?  If it wasn't for this I would be more inclined to think that it's the PMR rather than carpal tunnel.  Am reluctant to increase the pred until I've seen the Physio.  You seem to be doing really well, hope it continues.

I think it was because I used to sleep with my fists clenched, hence I couldn't open the right hand (left hand wasn't so bad). I made a conscious effort to then sleep with my fingers straight, increased the pred as wasn't coping in other areas and all cleared up, problem solved.  No, I didn't get the tingling. My pred taper is sooo slow but can't do it any other way. Frustrated...  Rheumy wanted me down to 10mg by Christmas, but impossible so going at my own pace in order to lead a more normal life.   Good Luck....

exercise 

 

Thank you, I will bear that in mind.

I agree.....physio never helped me and caused more pain because of the repetitive movements.

I had the same experience - I was on the floor crying in pain trying to do the physio set exercises before I decided to just forget the whole idea. My goal now is to just move more, do more and forget the 'accepted' way of gaining strength and movement. It just didn't work for me.

I go to a physiotherapist who is helping me in various ways, including low level light therapy to reduce the cytokines which cause PMR pain and therapies like dry needling to release tension in my back.  She gave me a few exercises to do at home which mostly deal with trying to prevent progression of kyphosis.  I have continued with exercises given long ago to keep core muscles strong to protect and support my spine as I have OA.  I have to say none of the exercises I get are specifially aimed at PMR symptoms.  Only the light therapy is for that. I asked her how she knew so much about PMR and she told me she has a good friend who is a rheumatologist and she got information and advice from her.  My physiotherapist has successfully treated other people as they recover from PMR.  Your appointment is, I think, to treat the wrist problems?  It could well be that being shown how to do a little self-massage to release the tensions in the muscles causing the pain, or something similar, may be an appropriate treatment.  The therapist may also have treatments for you like the ones I get for my back. I was really only cautioning you against being given exercises like lifting weights to strengthen muscles. 

i forgot to mention that I now have a weekly massage - it relaxes my muscles and I can then move and stretch more easily. It's made a huge differnce to my mobility, particularly in my lower back and hips.

I plan to write more about kind of exercise that is OK with PMR and what to avoid.  We have two kind of muscle tissue - fast twitch muscle and slow twitch muscles.  Fast twitch muscle are used for power, burst of energy, any kind of activity that is measured in seconds. Slow twitch muscles are for endurance.  With PMR and pred, we should engage only slow twitch muscles.  So any exercise that falls into endurance is good for you, like walking , swimming biking, etc, but it has to be at LOW and medium intensity.  Lifting heavy weights, or high intensity running ( interval training), when you go full power for a short time is accelerating muscle wasting - and should not be done while taking prednisone. It is not repetition, but intensity that makes those exercise damaging.

Okay.  I didn't know the science behind this, interesting to learn more.  Apparently my physiotherapist and I have been doing the right thing then?  I am very concerned about bone thinning and do wear a weighted walking vest every few day, with gradually increasing weights.  Also I do pushups and a couple of other things to try to maintain bones more than muscles but these exercises I brought into PMR with me, not introduced later.

no worry... Your walking with weights would be an endurance activity. The activity to avoid is much higher in intensity, like trying to lift equivalent of your weight, or bench-press the same. In all these cases usually one can do just several reps ( less then 10) and that is leading to muscle wasting - "thanks" to prednisone ihibiting muscle repair/rebuild process.

Prior to PMR, I did coutner top pushups and squats everyday.  I also lifted five pound weights.  I had other activites that I did no the floor.  I was walking about five miles a day.  I could still do that, but live in a very hot climate and am awaitng the cool down that should be here very soon.  I only walked about three miles today, but plan to increase that.  I have been afraid to do the pushups and squats based upon what some have said on here.  Do you think those would be okay.  I am feeling qutei well, no pain and working to get to 7.5 mg down from 10 in a few weeks.  I am doing th one that Eileen posted.  I took 7/5 yesterday and Thursday will do that again.   So fafr so good.  So, Nick, what do you think?   I do not want to tax my muscles.  Thanks, Donna

I do squats and try to do pushup as part of my stretch + exercise every morning.  When I do them I do it in a very slow way, making sure that I am breathing properly.  Just be careful when starting any new activity, since our muscles are not what they used to be.

Pushups can be hard  if done fast and in a burst, which I would avoid while on prednisone.

Repetition or sustained action is probably not damaging per se in PMR - but it will tire the muscles more quickly because even on pred their oxygen supply and lactic acid removal is impaired. I struggled to even hold a phone to my ear, developing claudication pain just from that, and using my arms did much the same. 

We talked about this before but disagreed. Let me give it one more try...

Every exercise is repetitive. Walking, swimming , biking, etc. When I bike I repeat the same motion 70-90 reps/min for an hour or so... What I am trying to explain here is that intensity, not reps are dangerous. For example, on the flat I can easily do 90 reps while biking... come to the hill I will slow down reps, but work harder to propel, and if the hill is very steep, then I get to much higher intensity, while my reps are slower yet. The last scenario borders the anaerobic exercise, which is more damaging to muscles and will cause not only fatigue ( oxygen supply is less then needed, and lactic acid accumulation), but will cause tearing down muscle fibers, and additional inflammation.  While prednisone helps with inflammation, it also inhibits normal rebuilding process of muscle fibers.  Prednisone inhibits muscle recovery , so by exercising hard ( high intensity, in anaerobic zone) we accelerate muscle wasting.  This is why we should not do high intensity training. On the other side, low to moderate intensity exercise will promote recovery and counter influence of prednisone on muscle recovery.

Bottom line is intensity, not reps should be a guiding factor. If you were to bench-press max weight just 2-3 times before being exhausted, that would be more damaging then lifting 1/4 of the same weight 20 times.

 

I merely made a comment based on experience with PMR. I'm perfectly well aware of the physiology - but we are talking about a pathological state. 

Other exercise forms such as walking are not using just one set of muscles on their own and always the same, your posture changes and the way you walk naturally means some other changes - you change speed, you stop now and again. Treadmill walking for example is different in that the gait is more sustained unless you change the speed and inclination very frequently. It also isn't always a good thing in pathological states. 

I guess we'll have to agree to differ - but I will continue to add a codicil because by no means every one could do what you do but people who don't know better will try.

What you said about walking is true, but when you are riding the bike, your motion is determine by geometry of the frame and it does not change. So the repetitions are comparatively the same.

I am not trying to tell anyone what to do, but if they decide to exercise, there is a right way and wrong way to do it. Most of my exercise is at low to medium intensity, I hope you understand that.  I use HR meter to measure and limit that intensity to be under 120BPM. When I want to push harder, I do it for very short time about 5-7 min in a scope of an hour long exercise. Even during that time my target is 135-140BPM. All my exercise are very controlled and with the purpose. I know that my max HR for biking is 152; I measured it during my stress test ( before PMR) .  This is one of the key points in my planning the activities. 

Point of my writing is not to encourage everyone to do what I do, but to explain the right way to approach exercise and use it in PMR recovery process. 

Lastly, I hope you take this as an effort to learn from each other rather then "exercise" in disagreement - pun intended.

Okay, thanks, Nick.  That is what I thougth I had read on here, but I guess I also thought that you had said that this type of exercise would be okay.  I just don't want to be so totally out of shape when this is all said and done.  The pushups that I always did were at the countertop.  I do not mean getting down on the floor for those.  I don't think I could do that type of pushup anymore.  I might just try a very small amount and try to build up.  Since I had done these for years, I hated to stop, but now I have not done them for a few months because of warnings I read on here.  I guess it is a tricky thing.  Thanks!!

If you had been doing exercises before PMR but have stopped for some time I think you could reintroduce them again, but slowly and carefully.  I had been doing physio for my back for years and one of the triggers which sent me off to have a meltdown in a medical clinic which eventually led to diagnosis was a growing inability to do the exercises.  After pred cleared up the pain and inflammation (a couple of days) I started doing all those exercises again, and have had no problems.  Before diagnosis I'd had a terrible time with physio for my poor shoulders, not knowing it was PMR, and I've never tried the new exercises prescribed at that time since - but obviously they had been inappropriate anyway, had we only known.  Since PMR I've taken up tai chi and Nordic walking, and both are fine for me, and seem to help maintain strength.  I think I have some "steroid myopathy" unfortunately so am not as strong as I was before pred even after a year of undiagnosed PMR.

I think I will reintroduce these into my routine.  I have been so afraid to do anything that might affect my muscles, but am feeling that I need to do something.  I was not doing major calesthenics (sp) prior, but in my routine, I was managing three sets of 10 reps pushups, and at the very least the same with the squats.  I was doing stair exercises, leg lifts on the floor along wiht some other exercises, and weights that were only 5 pounds.  I think I will start with maybe only 5 pushups and 5 squats and build up in time.  I do very much enjoy my walking and know that is good for me.  Thanks, I apperciate your response.  Donna

Like everything else in PMR world, pay attention to what your body tells you and go slowly.  But you will feel better once you get the regular exercise safely back into your routine.  

Thanks, I knoiw that I will feel much better psychologically.  The weater is cooling down a bit for fall, so looking forward to a lot more walking too.  It was only 71f 21c today.  That is a bit of a record for September here.  It is often over 100f at this time of year.  I need some cool breezes to energize me.  I will let my body tell me what to do.  Thanks, Donna  Oh, btw, was it shingles with your son?

No!  He had a reaction to leaves of parsnips he was thinning in the garden, which explains why it was on one arm, the one he was collecting them on.  He washed his hands right after bringing them indoors so that's why it was only his arm which was affected.  Rash nearly gone, but his arm will remain photo sensitive for a while so he has to be careful in the sun.  Weird, huh?!  🌿🌞