PMR Timeline

WOW!  Your are amazing!  You started with PMR roughliy around the time I did.  I admire your tenacity!  Keep up the good work!

Thanks Nick for the information about your exercise regime.  You have done well to get down to 9 mg in only three months. I wish you luck with the slow tapering from here. I have wondered about massage therapy - I have not had a massage since dx until this week. I do think it has helped the minor flare up that I've been experiencing. Hard to know if it's the massage or swimming the past three days in a row that have eased the stiffness. 

I definitely want to increase my walking and group fitness classes.  I know I need to.

 

Nick,  I'm getting tired and breathless even reading about your activity level !     Did you say you were 16 or (typo) 66??

    

( Jealously, I'll say, well done,  but DON'T overdo it.  PMR will take it's own sweet time - and you could wear yourself out . . . )     J

Believe it or not, I get depressed reading Nick's posts.  I feel so guilty that I can't excercise- I try, but pain always stops me.  If I carry on, the next day I'm practically bed ridden.

Poor old soul!😢

Oh Constance don't feel guilty, just do what you can, theres no point pushing yourself and ending up in bed.

Keep smiling

from another poor old soul xxxx

Me too Constance!   I manage the (mean)  30 min. daily walk and am also supposed to do back-strengthening exercises - which I've been putting off for a few months now. I'm even a year younger than Nick!

Don't be too demanding of yourself. Everyone's different. You'll recover at your OWN rate and I'm convinced that overdoing it is worse than underdoing it where PMR is concerned. And pain is your body telling you this. . . . Keep within the limits of comfort at the minute, it'll change as time goes by.     Kind thoughts,  J

This is a forum that is  meant to be supportive, so I hate to hear of anyone feeling bad in comparison to what others are dealing with.  We all have very different experiences with PMR - some are more debilitating than others. I wear a fit bit and there have been many many times where I have been unable to move much; days when my legs felt 75 pounds each; many days (still) when my husband had to hook my bra; days of great discouragement, just when I thought I may be close to kicking PMR out of my life, it would reappear with a vengeance.  We do the best that we can. The last thing we need is to feel like we're not doing enough.

 

Don't feel like that Constance - apart from the fact that Nick is a few years younger than you, he is also male! That does often make a massive difference. Men really do experience PMR differently and they also tend to respond differently to pred. No-one knows why - but it is probably a combination of hormones and muscle bulk.

If you are getting signals to calm down, be grateful - because one of the problems with PMR is that your muscles can't tell you they've had enough. If you have pain - stop. Rest. And then do a little bit more - but making yourself bed-ridden is doing no good at all.

Constance, also, don't forget that there is often a difference between the way men and women journey through PMR.  I've been getting this light therapy, and the physiotherapist, when I asked her, told me that a patient she had been treating was off pred completely after a year, has been for some time, and no relapse.  But this patient was male, so I decided I could not hope to keep up.  I'll do what I can.  I actually am finding exercise harder than when first on pred, and I think it's because of this myopathy, which was a side effect I did not expect, especially as I had maintained a fairly good level of activity even through the worst days of pre-diagnosis.  So the secret for people like us is to take it easily and slowly.  But you must do what you can.  If ten minutes is too much, then do five.  That will be a measure of success, just doing something.  And if Nick, or whomever, can do his interval training for however long, well, that's his measure of success.  I couldn't have done that when I was younger!  My physiotherapist actually advised me against high intensity training of any kind, said it would be a bad idea!  

For some people massage seems to cause a flare of the PMR - this is possibly/probably because they have something called myofascial pain syndrome (google it) which is also caused by the same inflammatory substances (cytokines) as PMR except instead of being systemic they are concentrated in hard knots of muscle fibres in the large muscle groups in pairs on either side of the spine, in shoulders, about rib level and in the lower back. Massage releases these substances into the system - result flare. If you are expecting that it isn't a problem - it will get better, but in the meantime you may well feel far worse. 

Movement DOES ease the stiffness - once the blood flow is increased the muscles are able to function better. The trick is to find the happy medium where you can move better without having severe muscle soreness the next day (and for days after). 

Boy, does he ever make me feel guilty, my thigh muscles have become so weak ( was once the strongest part ofmy body) and I do manage to walk, But....      Yes, he is male, and quite a bit younger than  me, but it does give me some incentive!  Ha!  I wonder how much pred he is taking since that has caused a tole!  However, good for him!  hurray!

Hi Sheila, I thought I  was  being  supportive,  albeit in a more humourous way.  The last thing I wanted to imply was that Constance( or anyone else) wasn't doing enough.  Really sorry if it came accross wrong . . . ..  

Take care,  J

Thank you for this information Eileen. I had no idea.  

Agreed!    J

You WERE being supportive!  I was simply referring to the fact that comments in this forum should make people feel supported,  not guilty or less than because they may not be as active as someone else is. I was not referring to anything that was said, just that I hate to think of someone not feeling good about themselves.  you did not come across wrong at all. I need to be more clear about what I mean to say.

More than one of us has desired an edit button on this forum usually for typos, but sometimes to make things clearer!

Does me good to have a moan every now and again.😄

Feeling vulnerable at the moment.  On Wednesday I twisted my OA hips, it was agonizing!  Since then I've been house bound.  Still, tomorrow is another day and I'm determined to have a short walk (which, unfortunately will probably be in the rain - the weather has been awful this March).

Don't you get exhausted sitting around all day??

Didn't come across wrong to me!  In fact I found it supportive.

A lot is due to the format of the forum where you think you are replying to someone specific or alternatively making a general reply but it isn't obvious.

I've been slated for a reply I've made to someone particular that someone else took exception to because they didn't look at who the reply was for. 

No, you're fine!  I think I've been looking at a screen too long (with my other eye watching the TV news!!) and my brain in the middle!!    

Kind thoughts,  J  x

Phew! I'll get the hang of this before long - haha.

Ouch! 

I won't mention our weather then - sat on the balcony this afternoon to watch the rugby ... Having had the cleaner in to sort oout the FILTHY state of it 

Been an exhausting day - 2 different sking races in the morning and 3 different rugby internationals since - with shopping in between.

Just as well it is the end of the winter sport season... 

if you read on this forum, experience with massage is mixed. Some are lucky to find good massage/therapy place that is aware of PMR and it helps. Others have bad experience.  Hope you are one of the lucky ones.  As long as you focus on stretches and increase of range of motion, therapy will help. I would be reluctant to strength exercise, especially in the beginning.

For me either swimming or massage are relaxing and I always feel better. 

When I got PMR and was laying in bed not able to even turn without pain, I was asking to myself - Do I want this kind of life? being dependant for basic things on others... That is when I decided to do whatever it takes to regain independence.

Besides, I have to... to keep up with my wife, who is 16 years junior to me, and my daughter, who starts junior high this year... That is what keeps me going...

Even before PMR, after heavy massage to "knotted" muscles, I felt like truck run me over. This must be the case you are describing - "myofascial pain syndrome".  It usually goes away day after... Now (after PMR) my therapist  is gentler to me and never does deep muscle massage as intense as before.

I'd think so yes - if you had knots in muscle they were almost certainly concentrated pockets of the cytokines that lead to the muscle fibre inflammation. Set them free and they make you feel rubbish even without PMR. If you use cortisone shots to deal with them the inflammation will be reduced - but to be honest, really good deep massage does a better job in the long run. 

Same here, I wonder what I`m doing wrong....we do what we can I tell myself, we are all different...and men somehow seem to fare better than females....

No-one should ever feel pressured to come up to anybodyelse's levels - whether it is a low pred dose that works or an amount of exercise. 

Hormones and muscle bulk especially differ greatly between male and female and even between very fit and less fit people of the same gender. As we age our muscles atrophy anyway and pred probably contributes to that. 

Think I would be happy to get to 5mg and just stay there....(on 11mg, can`t lower with out lots of pain) an article in the paper last year said many people have to, and doctors are happy with that as a maintenance dose....

Yes, Eileen I thought the dreaded hormones would come in it somewhere.  I have come to the conclusion....all my life, I`ve never been the right age...due to the H word!

I was at 5mg - and happy to stay there but PMR seems to have had another view! I can only assume it was an infection that messed up my immune system again and I'm back to square one. Trouble is, I find it difficult to remember what it was like back then - was I dizzy and breathless as well as being exhausted??????

Or maybe I just couldn't do enough fast enough to get to that state 

I am beginning to wonder...is there many people that have actually got off steroids....seen the back of PMR....and stayed that way for several yeras...or is it not possible to know that info??......

Perhaps the struggle and what has happened to you is the norm for us...what do you think...or know?

Oh yes, I think so. You have to bear in mind that on the forums we meet the others who are having problems - if they are on pred but reducing steadily without problems they don't need support in the same way. There are a lot of people who appear on the forums, hang around for a few months and then disappear when they are back to near-enough normal because they have better things to do getting on with looking after the grandkids, working or whatever, or don't want to be reminded of what can be a quite dark period for many and are active enough to not want to spend time on the computer/internet. Some are lucky in having GPs or rheumies who realise that a good way to go is leaving their patient on a low dose of pred long term - I know quite a few who have been told by their rheumy/GP that 1 or 2 mg can't be doing anything only for the symptoms to reappear within a short time of trying to stop altogether.

On one of the forums there are 2 ladies who had PMR, had several years pred-free, had a second episode and are now off pred again and - so far at least - are well. One is in her mid-80s and has had a hip replacement - in fact, that seemed to help the pred reduction. Does the pain of other problems "feed" the PMR? I wouldn't be surprised.

There are several others who have stuck around - we have become friends through the forums and they like to keep up with each other, a PMR-generation facebook maybe? Without the people who have recovered it would be difficult for some of the support groups to keep going - most people who need the groups are not well enough or active enough to do the footwork that is ineveitably needed to run one.

I also know people who have had GCA and are off pred successfully - sometimes more quickly than is the case with PMR. Not everyone with GCA develops the PMR symptoms. 

I find that DEEP massage is helpful, espec. concentrating on miy back.  I always tell the therapist to concentrate onliy on my back.

The various techniques my physiotherapist uses on me are all centred on my spine - light therapy, dry needling, some sort of deep pressure on my vertebrae (she jokes that she's giving me back some of my lost height  ).  All seem to have helped with generalized pain.  I do apply pressure to bits of me that are painful which I can reach, and that seems helpful too.  I wonder if the latter is something to do with encouraging the lymphatic system to get on with its job and remove stale fluids. 

Thank you once again for the reply....it is reassuring to know we can battle this......I realise we are all different as well.....and if you are well, you wouldn`t probably need the forum.  There are many days like others I`m sure, when I`m housebound and the forum helps me by knowing others are sadly doing the same battle....and I`m not alone (or doing it wrong!)....

I do have Bowen therapy about every three weeks....sometimes more benefit some weeks than others...it may sound strange, but I also feel I`m doing something about the PMR and not just letting it take over my life.....and of course it "my relaxing" time........

I and I`m sure others are very grateful to you and those that can manage to run the forum....Thank You

Anhaga,   You referred to  your physio putting 'deep pressure on my vertebrae'  That would worry me a lot if there is any degree of OP in the spine - could be very  damaging.  . .    J

No, she's really gentle.  She has my x-ray report, and my definition of "deep" is probably not what you are thinking.   She's gently increasing mobility of the facet joints.  It causes me no pain at all, nor any discomfort later.  As far as I know I have no OP in any of my joints - just some OA in a few vertebrae particularly my neck and these are not the areas she is working on when she does this.