Muscles

Can I ask about your shoulder injury?  Do you feel it was related to PMR?  I'm also facing shoulder surgery.  Full thickness rotator cuff tear in the belly of the muscle.  Repair options are not very successful.  

Well, I am one whose arms and shoulders are more capable than my legs.  From what I conclude from these forums, as they reduce the prednisone, some people have more trouble with their upper body and others with their lower body.  I can tell I am having a flare when the arms and shoulders start chiming up again while the legs get worse.

The legs can put up with more exercise than the arms and shoulders for a couple of reasons I think.

First reason is that, even on our bad days, most of us pmr patients will at least have to use our legs, which is exercise for the muscles and tendons. These muscles thus will not atrophy to near as much an extent as will the arm muscles.

The second reason I believe is that using one's arms typically involves a much greater range/variety of motion, which puts stress on inflamed bursa as tendons swing about and cross the bursa sacs, causing pain.

Getting one's arms back into a state of usefulness is of course limited by the range-of-motion limitations imposed by the bursa sacs. As I've mentioned before, this can be smewhat reduced in effect by moving through any painful range of motion extremely slowly on the first motion, thus sparing the bursa from the stress and irritation of excess fluid pressure.  I don't pretend to know the exact mechanism of this in terms of the way the fluid is displaced, but I can try more in the way of arm (mostly shoulder actually) motion/exercise when I start with a very slow first swing, with or without holding any weight.

So that I won't have to make several posts here, let me also add that I recall days when my grandmother was around 90 years old, how I became aware of how her abilities were best in the earlier hours of the day, so I will suggest here that one take on the laborious and time-consuming task of testing various exercises when one's energy level is highest, just as I am typing this between sets of exercises this morning. It really makes a difference in how the muscles respond, in one's energy level and in how well that motions are coordinated, even in my case (and I'm only 55).

Lastly, I've become addicted of late to the humor that some here are able to maintain in spite of your struggles with pmr. I'll try to keep up!

Holly, I had the surgery two days ago - it is interesting.  First, exploratory to see if I had any torn muscles, or other tears - nope, but he did find a TON of inflammation (no surprise).  He buzzed of sharp edges of bone and cleared out scar tissue. Also made more of a space in there which should help.  No issues except I think next time I will skip the nerve block, didn't like that at all but it did prevent pain.  I did not have rotator cuff tear, yeah!  I injured it about two years ago Oct 2014 and simultaneously the same day actually the PMR began.  Oddly enough.  I injured it rowing a pontoon boat with a motor that died, across a lake in high winds - way too much for my shoulder - will never do that again, smile. I'm doing well recovering.

 

Sounds like the rowing emergency might have brought on the PMR?

I myself had to clear the stuffed rain gutters of my house last Friday, prior to a predicted major weather event. I was up at 30 feet above the ground, and lying on my stomach while inching my way across the entire edge of the house. Truly strenuous. The combined stress, physical and mental, left me somewhat fatigued and sore for nearly a week, definitely symptoms of pmr.

Luckily I am getting back into some light running, with no severe localized symptoms, while still maintaining my comfortable 2.5mg/day pred dosage.

If the TaiChi warmup involves slow, sloth-like motion, I would expect it to be very good as a warmup.  I notice that I can do a lot more in the way of a forceful range of motion when I start my lifting with one or two super-slow repetitions through the range of motion of the exercise, which seems to prevent aggravating my bursitis irritation in my shoulder area.

After I had reduced to 10mg I was able to regain strength that I had lost to inactivity.  I had a very rapid weight loss initially, before beginning a regular pred dosage, and I have regained much strength and muscle tone but still maintain that same weight loss so it must be from body fat loss. It takes extra work to regain muscle when one is older than 50, and I was 54 when I got back into working out hard in the hills on the bike. I'm now 56 and at 2.5mg/day and now also doing pull-ups comfortably (in relative terms!).

No rush to reduce your dosage further. I recommend doing all of the exercise that you can do without aggravating anything.  I try to run and jog each day, morning and evening respectively, and tug on the pull-up bar every day if possible.

Please be aware that most of the successfully exercising people on this forum are male.  Women have a tougher time, partly because the disease process of PMR seems harder on our bodies, we seem to react more sensitively to pred, and most of us start out with less muscle mass.  I generalize, of course, but worth keeping in mind as you try to figure out what is going to work best for you.

I feel confident that what I said applies equally to men and women, as I didn't quantify what level of exercise, only that it be at a well-tolerated level and with pred dosage at a sufficient level.

The pred dosage could be quite different for different patients, as could the actual force and range of motion of lifting/stretching exercises, both of which change over time in every patient.

I strongly suspect that fluid is displaced or squeezed out of inflamed tissues during the first SLOW push or pull, as even the second repetition is much, much freer moving and with less pain. It is the nature of pmr to cause stiffness when the patient sits stationary, so frequent restoration of motion is required.

Each patient must use some imaginative effort in determining what kinds of exercise are best tolerated, which is going to be much more challenging for those who are not in the habit of exercising, but it gets better over time, especially when exercise is done with greater frequency AND at a still-good comfort level.

Hopefully, all will understand that exercise is best done at a certain number of repetitions, depending on how slow that one does them and how much force that they are applying. Also that it is best to start out with very light weights or resistance level, and to warm up with a few pulls (or pushes, or lfts) before doing a full set of perhaps ten repetitions. That is how muscles are most comfortably stimulated to grow and become stronger.

Also, I stated "...I try to run and jog each day, morning and evening respectively...", but I meant to say RIDE and jog, since I go for a bike ride in the morning and jog to the store in the evening.

Well, Dan, your reply does kind of prove my point.  I know you are intending your comments and advice to apply to all, but from the other side of the gender divide I have to say we do need to be aware many of us have limitations which are less likely to affect men, or perhaps I should qualify that by saying, men who were previously fit and active.  There are many women on this forum who were fit and active before PMR onset.  Some were far more athletic than I ever was and yet they have trouble now doing as much as even I can.  I suppose I should find it inspirational not discouraging when I read of someone who can bike mornings and jog evenings when many of us are having trouble getting in 10,000 steps of walking!  I simply made the point I did so as to make sure the other readers don't get what may indeed be unrealistic hopes up.  I think it may take longer for many of us to recover to the point where you are.  And don't get me wrong, I'm very pleased that you are doing so well.  

 

Dan, I do agree with Anhaga, you may find it possible to continue a fitness regime, but PMR does in general seem to have a different effect on females, a lot of whom were ultra fit before hand and get very frustrated they cannot continue. The trouble is by encouraging people to do certain exercises can exacerbate the PMR and cause pain. It is important that we appreciate we are not all able to do the same things in the same way when we have PMR. 

Dan, thank you so much for your timely suggestions. I've just reduced to 3 1/2 mgs of Pred for my PMR and my muscles are feeling more "healthy". Tomorrow I am going to try my weight circuit that I used to do before PMR hit. 

My plan is to go go through it all, about 8 machines/free weights, and do between 5 and 10 reps.  I'll follow your advice to do the first couple very slowly.  I also plan to use very light weight. And then do all my stretches at the end. 

My osteopina was worse last scan scan and I would be so happy to be able to get back to doing weights!!  Hope I can do this as trials in the past have triggered lots of sore muscles so I didn't continue with them.

so far walking and yoga are easy to do, plus some golf as weather allows. 

I'm glad that you seem to have the patience to keep trying to get back to what you've done in the past.  I remember not being able to jog, having to wait months before I could even begin walking much, but I'm glad now that I kept myself familiar with where I was at by testing the waters daily.

And it was when I started going out for a bit of exercise 2x daily that I felt that I was onto something as I was able to get comfortable at a lower dosage.

I somewhat forget now just how long it took for the pred regimen to allow me to have the energy to get moving twice a day, but let's say that it can take a month or three. I remember not really being able to confidently climb a ladder even after a few months into my treatment, seems that my shoulders were the slowest to respond, and of course my muscles had wasted and needed to be re-strengthened.

Really not sure i would start by aiming for 8 lots of up to 10 reps - 5 reps each max would be more sensible. And the other recommendation is to make sure the musclegroups are well mixed - letting a muscle group rest before being used again.

As far as the rest of the discussion is concerned - even the rheumatologists realise that men and PMR is a very different thing to women with PMR! Was mentioned in a discussion I had with a PMR research rheumy the other day.

Hi Dan Ye your right about sitting for any length of time it causes stiffness, I try to exercise a couple of times a day only 5mins at a time, not much to talk about, I feel with this disease you have to be on the move with rest in between of course,

I do like to walk and have tried to keep this up 40 to 50mins, not everyday, and try to do some floor exercises for my legs,

just sometimes I have problem with well it's like tendons pulling at back of leg, when walking, Back of knee, like there going to snap, but it's not always there, wonder if anyone else has this problem?

I've had GCA and PMR most of pain is in my thighs and neck but wears of as day goes on, down to 5mg and keep a check on my bloods,

Great your nearly back on tract, but your younger this stands to you, good luck

Dan, I exercised throughout my undiagnosed year.  In fact I thought the pain might be because I wasn't doing enough so I pushed and pushed myself to do more.  As I've posted before, forgive me if this is repetitive, one of the two things which drove me to a meltdown at the medical practice and being almost instantly seen by a new (and competent) doctor was my growing inability to perform even the simplest longstanding physio exercises.  As soon as I was free of PMR (and happily for a couple of months all the other aches and pains) I resumed my exercises and also started walking 10,000 steps a day as I was completely freaked out by the threat of osteoporosis.  I have not stopped.  BUT during the subsequent 18 months I went through a fairly considerable period of time when continuing these activities became much harder.  My muscles were definitely not as strong.  It's only in the last few weeks, now that I've got pred dose down below 3, that I feel I'm gradually getting stronger again.  

I'm wondering what was going on with your tapering regimen during those tough 18 months(?).

I found myself regaining my ability to increase my activity intensity after a few months on pred, by which time I had dropped to 10mg. Things were very good for a month, then we had some forest fires that kept me from exercising outdoors for nearly two weeks. I then started to have problems with the soles of my feet when I tried to get back into my activities and had dropped further to 9mg/day.

In hindsight, I then suffered needlessly for many months as the rheumy-prescribed taper contnued to 5mg, at which point I realized that I had to take matters into my own hands and hold around 5-6mg for the next full year!

It was when my seasonal activities peaked, about a year later, that I suddenly found myself able to skip a day's dosage entirely, once per week, so I quickly reduced my dosage to 3-1/2mg/day through that winter. I would relapse several months later, upping my dosage to 5mg for the next six months until my seasonal activities increased again and I was again able to quickly taper to 3mg, then to 2mg just three months ago.

I have since gone up to 2.5mg (which is a conveniently-split 5mg tablet that I have a few hundred of), which has got my shoulder bursitis back under control so I can dress more easily.

I am currently forcing myself to adhere to a twice/day exercise regimen, as this allows me to continue at the lower dosage. Taking a day off from my usual duration of exercise quickly brings back stiffness in my trunk, ribcage, shoulders and hips, though with calorie restriction I can significantly offset that effect (by eating mostly just vegetables and meat/chicken/fish in controlled portions).

Elizabeth, I also get tight tendons in back while walking, so try to put a little more bend in my knees and to jog for the first half of my evening exercise, after which my tendons are not so tight, then I can walk home comfortably, sometimes carrying my groceries since I usually jog to the store.

Eileen, you're right about using a smaller number of rep's, especially when resistance exercises are done very slowly.  I increase my reps to make up for my use of very light weights, and for the fact that at my weight, ten or so pull-ups seems about right. I keep going until my muscles feel well-taxed, but not so much that I have discomfort the following day. I can even do these daily if I like, since I am not lifting at such an intense level of resistance so as to require days of recovery time, but each day is a little different depending on what time of day that I do the dumbell and pull-up exercises.

From 10 mg I have followed the DSNS method of tapering.  I was reducing to 7 from 8 about a year ago, and am now at 2.5.  Not all that speedy!  Admit it, Dan, some of us just cannot develop the muscular strength you think we should be able to, at least as long as a certain level of pred is in the picture.  I absolutely do encourage people to get exercise, hopefully in the fresh air when weather allows, but we must treat our bodies with some care.  Also, I don't know how old you are.  I'm currently on the downhill slide of the year towards 70, and I actually think I do very well for my age and considering my condition.... 

Should add that because I developed some of the more serious although invisible side effects from pred (pre-glaucoma, pre-diabetes, probable speeded up bone thinning) I felt it more important to safely taper my pred dose down as far as I could.  That was my priority, not physical strength.  And as we often say, we are all different!

Like Anhaga, during the 5 years I had PMR and no pred I also tried to improve fitness - I had been used to being at the gym most days. I simply could not do it any more. I changed gym to one with a pool and aquaaerobics. That I could manage, followed by heavily adapted Pilates and yoga. But I still could not improve muscle strength.

Please Dan - just admit there is a difference between men and women who did competitive level sport previously. It is almost certainly to do with muscle bulk - and probably mitochondria. The higher level of muscle bulk allows people to do more than those of us who weren't at such high levels - and far more than people who didn't do sport. If you start at a higher level you are already past some threshold. 

And pull-ups? I can't carry shopping bags never mind lift my body weight!

An update....

I did my weights routine with mixed results.  Two of the machines really bothered my shoulders with the first rep so I quit them immediately.  The other machines, free weights and squats were ok to do but I kept to about 5 reps and very light weights.  That night my aches  felt like I had worked out.....and I didn't feel like I had PMR aches.....if that makes sense.

The next day I went to my gentle yoga class thinking that would keep various muscles moving and help with any stiffness.  I must say that I was more achy the rest of the day but not the unpleasant PMR stiffness, except in one shoulder.....and shoulders are my worst PMR spots.  So I'm not sure if going to yoga helped or was a minor set back.....but nothing major came of it.

Today is one day later and I'm pleasantly surprised by how I feel.  I think in another day or so I will try my other weights circuit, again doing things slowly and carefully.  

I must say that I am very sad about the state of my muscles.  I used to love doing my weights and now I struggle to even do them at a very light weight.  But I just need to focus that I think this time I will be able to do them!

I really appreciate that Dan and Nick have posted a lot of detailed info on their work outs.  It inspires me to be more active as my body allows.

If there are any women out there doing some kinds of exercise, please post about it!!  I'm always looking for new thoughts about this!!

I just completed four weeks of physical therapy twice a week for a problem with my knee.  The therapy worked for that problem, but it also revealed some additional issues: some extremely tight and very weak muscles and as a result, a muscle imbalance.  Both knees and hips were affected.  So the therapy consisted of building strength in the weak leg muscles and stretching.  I am to continue the exercises at home now.

There has been improvement in leg muscle strength, but not complete,  and I still am quite stiff and sore every day.  It’s like I went skiing for the first time in the season, but the soreness doesn’t seem to go away.  I still can’t come to a full kneeling position on the floor and can’t get up from the floor without my arms pulling me up, although this has improved a little bit compared to the beginning of PMR.  I also can’t get into a very high SUV without pulling myself in with my arms.

Additionally, I think there is swelling in the back of the knees which is preventing my bending them completely and causing a weird sense of fullness and soreness.  I did have an MRI on the right knee which revealed a Baker’s cyst and torn menisci, both of which the orthopedist dismissed as being very common in people my age.  Regardless, it doesn’t explain the similar feeling in my left leg.  Both my rheumy and orthopedist think I may have osteoarthritis, but if so, how that developed is a complete mystery.  I was perfectly fine, pain-free and active before PMR.  

I am frustrated that it is not the complete answer yet.  Perhaps the PMR has a ways to go or perhaps other medicines and conditions play a part—there is no way to ever know.   I am down to 5mg prednisone.  My rheumy and eye doctor want me to reduce since I have developed high eye pressure, but I don’t think I am reducing too fast.  I did have to reduce from 7 to 6 and then 6 to 5, both somewhat drastic reductions and there was no question, the first week of each was very unpleasant.

So to me, this is good and bad news.  I think the physical therapy was helpful and the therapists understood PMR which is important.  I will just continue and hope there is additional improvement.

" Perhaps the PMR has a ways to go "

All the pred is doing is managing the inflammation of an ongoing underlying autoimmune disorder - even at lower doses it is still managing a lower level of inflammation but the underlying disease process is still making your muscles intolerant of acute exercise and that won't change until it burns out and goes into remission. For 75% of patients that happens in anywhere between 2 and 6 years.

" I still am quite stiff and sore every day.  It’s like I went skiing for the first time in the season, but the soreness doesn’t seem to go away."

I've just been writing about this on another forum with someone who rides. Look up DOMS, delayed onset muscle soreness. Your muscles are unable to recover from exercise properly, DOMS lasts much much longer and if you keep exercising will be there as a permanent thing. Do too much and do enough "damage" to the muscle fibres and it may take months to recover fully, even with rest and not continuing with the activity.

The first rheumy I saw told me I had OA in hands and knees she "could feel it". It wasn't. It was the PMR - nearly 12 years later there is no sign of OA at all. They sometimes have no idea what PMR is and what it can do. Mine was tendonitis, synovitis and bursitis, all due to neglected PMR. It took a long time to get under control using oral pred at 15mg/day. 

Are your occular pressures not controlled by drops as in glaucoma? 

Thanks for this information, Eileen.  It is very helpful and makes a lot of sense.  That is why I am glad the physical therapy is over so I can pace myself on my own.

I don't think the pressure is enough for drops yet.  It was only starting to raise, so my eye doctor suggested reducing prednisone to avoid eyes becoming a problem.  I really think I am at an ok level with the prednisone, but also think the PMR is active as you indicate.

Hi Anne, I too had increased ocular pressure.  My ophthalmologist never suggested I drop the pred dose.  In fact he chatted with me about the dangers of GCA and how it is a medical emergency if symptoms appear.  He actually gave me a lot more info than my GP had although by then I'd filled in the gaps with my own reading.  All I had to do was return for further monitoring.  At the next visit I had reduced my pred and the ocular pressure had gone back down close to my normal level.  Had the pressure continued to rise he would have prescribed drops.

I think that is probably what happened with me.  My eye doctor communicated to me and my rheumatologist about my increasing pressure and the rheumatologist took that as a hint to reduce at my next visit, as did I.  I was ok to reduce in any event, so I don't think it was improper.  I am being monitored by my eye doctor every 6 months.  She is an excellent doctor and also explained in great detail about GCA.   

Well - either way - you need the mount of pred you need or you might as well not take any. And other things need to work around it.

I do appreciate how lucky I am - no raised pressures and no raised BS. Wouldn't object to cataracts - could get rid of at least one pair of specs but that isn't going to happen!

It's entirely possible that my eyes had been even worse earlier as I was already down to about 8 by the time I saw the ophthalmolgist.  My gp was really casual about the whole thing.  Just told me to go to a random optometrist at an eyeglasses store to get pressure checked.  I wanted to be checked for GCA as well and so I went to my own eye doctor who checked me very carefully. 

I'm one of those women who was very fit prior to developing PMR - I was doing triathlons! Once it hit me I could do NOTHING. I couldn't get out of the chair - even with pred - and not just with pain, but because I was so fatigued. I was completely incapacitated. The very idea of walking was too much to bear. I was on 20mg pred 6 months in and still unable to function.

Two years down and I'm *thinking* of exercising! I have no muscle tone or strength. I can't do the physio I was given as it causes pain. I CAN walk short distances now - slowly - on good days - and I think I'm doing well in the scheme of things.

Sorry if I side with Anahaga on this one!

 

On another forum someone has noted his testosterone levels have fallen dramatically on pred - they are still in the upper 200s if I remember rightly - and whether this is anything to do with it (what I'm not quite clear). That is an effect pred can have, don't know if it is universal though.

However - since women have levels well under 100 anyway: is this the difference we note between men and women? Men still have levels way higher than us.