Feeling Miserable
Posted , 16 users are following.
I've had PMR for 6 months now and have been doing quite well having started at 20mg Prednisolone and am now down to 8mg. My main problem is the side effects from the steroids and they are really getting me down. My eyesight has got rapidly worse - I'm now awaiting a cataract operation and don't feel safe driving long distances any more. I have also developed carpal tunnel syndrome in my right hand, which, because of the constant pain, tingling and numbness in my fingers makes writing, using a knife when eating and gripping the steering wheel when driving, very difficult and uncomfortable. Even tapping out a message as I'm doing now, is painful. I have a physio appointment booked for the 29th which my GP says should help. Apart from that I am still plagued by extreme tiredness, so every day is a real struggle and a major effort to get things done. I just want to get back to being the person I was a year ago - will that time ever come? I have a colleague who has had PMR for 2 and a half years and is now off steroids completely but she says she never had any side effects whilst taking them, regularly walked 5 - 6 miles each week and generally led a busy active life! I believe this is rare but how I wish I was one of the lucky ones like her. However, it's great to be able to come on this site, have a moan and know you'll be understood, whereas those who have never had the condition don't seem to have a clue! 😦
1 like, 62 replies
Anhaga fran2498
Posted
I'm so sorry you feel so wretched. The side effects of pred are always a worry, but at 8 mg you are also getting into the zone where the adrenal glands need to wake up. Hopefully you are now using a very slow tapering plan so that the risk of a flare is reduced. I think many people who get cataracts are those who would have developed them anyway, but pred speeds up the process. I haven't met anyone who wasn't happy after their cataract operations with their greatly improved vision. Most people do in fact take longer than 2 or 3 years to get off steroids, but even so if we can get our pred dose down to a very small amount so that the maintenance dose is low the side effects pretty much vanish. At the beginning I had increased ocular pressure - enough that I had to be monitored for a few months for glaucoma, and increased blood sugar, same story, pre-diabetes. Both of these side effects diminished when I got down to about 5 or 4 mg and at 3, where I am now, they have gone completely. The side effects most troublesome to me now are reduced muscle strength which I guess is a pred side effect and lack of stamina which I attribute to adrenal glands which are apparently functioning but not overly efficiently yet. The hardest thing for active people such as ourselves is coming to grips with the need to slow our pace.
fran2498 Anhaga
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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?
Anhaga fran2498
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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.
donna60512 fran2498
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fran2498 donna60512
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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.
donna60512 fran2498
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diana21296 fran2498
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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.
fran2498 donna60512
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fran2498 diana21296
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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.
diana21296 fran2498
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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....
Anhaga fran2498
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Oh I should have said - please make sure your physiotherapist understands PMR. Many of them don't although they may say they do. Repetitive exercise, the kind which requires you to build up more repetitions over the days and use and reuse the same sets of muscles is not a good idea. Better suited for PMR are the kinds which gently improve range of motion and encourage relaxation. Building muscular strength through repetitive excercise is virtually impossble for someone with PMR.
Anhaga
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exercise
fran2498 Anhaga
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erika59785 Anhaga
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FlipDover_Aust Anhaga
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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.
Anhaga fran2498
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FlipDover_Aust fran2498
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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.
nick67069 Anhaga
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Anhaga nick67069
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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.
nick67069 Anhaga
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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.
donna60512 nick67069
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nick67069 donna60512
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Pushups can be hard if done fast and in a burst, which I would avoid while on prednisone.
EileenH nick67069
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nick67069 EileenH
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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.
EileenH nick67069
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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.
nick67069 EileenH
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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.
donna60512 nick67069
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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!!
Anhaga donna60512
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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.
donna60512 Anhaga
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Anhaga donna60512
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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.
donna60512 Anhaga
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Anhaga donna60512
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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?! 🌿🌞