Greetings to all on this forum, and the many of you with whom I have connected happily in the past 12 months.
As I write this, I welcome your hoots of derision, ‘told-you-so’ remarks, and any other helpful comments…
Ok, here goes: I was diagnosed with PMR about 12 months ago after being very fit and active for most of my life so far. I played squash regularly into my early 50’s, am a DIY ‘demon’, and have always pushed my physical limits. This isn’t for showing off’s sake, just for the pleasure of being able to stretch myself physically and mentally. Generally, it’s been a positive thing for me.
Just after my diagnosis and on a ‘high’ with the preds (and in denial?), one day, showing-off to my friends about how fit I really was ‘despite PMR’ (my faulty rationalisation..), I ran-up a short hill at my normal full- tilt as is my defiant character for better or worse.
Result: a strained Achilles tendon which took a month to heal and slowed me down nearly as much as the PMR had done for several weeks prior to going on the preds.
Lesson learned? Well, not exactly. 12 months later, and doing / feeling pretty-well on the process overall with PMR / steroid withdrawal symptoms, today all seemed well with the world (and my body): and today I sprinted about 50 metres in the open-air having totally forgotten about my vulnerability to injury. Ironically, I was trying to help a colleague who had left something behind at a meeting, and wanted to save them some time and inconvenience… but at my own expense.
Result: second-degree Calf muscle strain and in agony, hobbling around for the rest of the day, and almost unable to drive home from the meeting due to the excruciating pain. Prognosis: 3 weeks of resting-up the injured leg, the ignominy of limping around at a snail’s pace (not good for the Action Man image), and feeling a bit daft as a result of my well-intentioned ‘heroics’. Mmm…
The moral of this story? With conditions like PMR, even (or especially?) the ‘fittest’ of us previously still have to be aware of our limitations: even when feeling so much better. As PMRpro mentioned in one of her posts about an experiment with a short, enforced lay-off with army-trained athletes: it takes a long time to regain the same level of fitness as before, if we can at all.
So, take it easy, everyone. Don’t rush the process, even when feeling relatively good. It’s good to give ourselves little ‘challenges’, but remember to take ‘baby steps’ in managing your physical recovery - not great leaps. The process of the Mind that can often drive us to achieve great things in better times can also deceive us when we are ‘one wing down’. And, pacing ourselves mentally, as much as physically, is key to this with PMR especially. I know, from personal and painful experience…
As I rest-up with a very sore leg and a (well-deserved, in my opinion) glass of wine, I’m planning my strategy for negotiating my normal shopping route around Waitrose (or wherever) tomorrow, with some dignity. Maybe I’ll adopt a ‘John Wayne’-style swaggering gait to distract from my temporary disability? Maybe I’ll just pretend that, when I can’t walk easily or quickly, I’m waiting for someone / something? Maybe (if it matters), I’ll just explain to strangers that I’m a bit slow on my feet because, despite looking well, I have a rare and ‘invisible’ illness that slows me down physically and mentally.
It’s amazing how others can empathise with this open-ness and honesty - and how many can relate to the stuff of the human condition and illness in one form or another.
That’s it folks. Keep positive, and keep contributing your thoughts and experiences around PMR and the Journey.. .
Mark B
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markbenjamin57
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Oh dear. Not going to say anything (rare, I know) - except we've all been there at some time or other. And you've chastised yourself enough - and hopefully won't do it again! That's the important thing. Trouble is, as you rightly say, there are times when we forget we have this illness.
In fact, it's well known that in our hearts and minds we are all young!!! (Just the body lets us down at times)
I just found your letter so funny. No I am not laughing at you but at the thought that most of us have done something similar. I know I have and regretted it. Like the time when I was coming out of a cinema with my grandsons and walking faster than usual so as not to appear 'old' and tripped on a rough pavement and the end result was two walking sticks and a lot of pain.
Unfortunately it doesn't take much to upset our bodies with PMR but the healing time is lengthy and painful.
Enjoy your glass of wine and do be careful when you shop. Push a trolley and read your shopping list often for a rest!
Thanks, and so true, Patricia! I'll try not to drink the wine at the same time as shopping - might get me banned from ASDA ;-(.
As you suggest, we are all on a similar journey and it's good to have a bit of a grin about it as well as sharing some of the more challenging experiences in the process.
Laughter can be the most powerful therapy of all..?
As some may know I've finally bought Nordic walking poles. Tried them out yesterday and thought, this is a breeze. I'm a natural! But it was a five minute walk out and three hours later a five minute walk back. So today I thought, I'll go around the block (that would be about fifteen minutes). Felt great so thought, I'll do two blocks, oh maybe I'll walk all the way to the trail and come back that way. Well! I was exhausted by the time I got home. I can nowadays walk much further than that on a regular basis, but the walking poles require a different motion of the body. So I totally relate to these accounts of overdoing physical activity.🚶🏃💃
Re the shopping just be careful.......I am on two crutches with the busted femurs which doesn't help with the PMR in the shoulders and upper arms. Shopping in Waitrose in Cobham I have become a target.....I stand back for people to pass me and they ignore me and stop in front of me, cut me up with their overloaded trollies and are generally hateful. Contrast that with M&S in Weybridge where a lovely lady sent her little girl last year to get me a trolley without even asking me (I had only meant to pick up one garment at first )and it was like living on another planet. I can now understand how disabled people become bitter......thank goodness for on-line shopping, although there isn't a lot of interaction with the rest of the world involved that way......maybe for the best?
It's the way you tell 'em, Mark!! I hope your leg is much better tomorrow but, if not and you find it isn't up to tackling Waitrose, then why not do what I've been forced to do this week.....order online?
Thanks Celtic, 'the way I tell 'em' is my professional work as a People and Change trainer / consultant - and the story of my life (for better or worse!).
I don't claim to be any kind of expert in the PMR context, but if I can bring a smile to a few faces along the way, I feel that I've done my bit.
Mmm... as for ordering online? Thanks, but I think I'll practise the gammy-legged John Wayne (or other) strategy in- person in the shops and get some comedic mileage out of it. Watch-out Waitrose tomorrow...
To quote an old proverb: 'a smile is the shortest distance between 2 strangers': and (for me, at least) one of the greatest pleasures in life is in helping others to laugh even if you are struggling to laugh yourself ;-).
PMR has resulted in a longer recovery from any illness or injury it seems to me, especially when I have over stretched myself with exercise. I find it frustrating that my muscle power is so limited especially when gardening. As posts here indicate, it's good to keep positive, and keep smiling!!
Your last sentence - no I don't agree - you should be active but not beyond the stage where you suffer and do more damage to already under pressure muscles.
Don't blame everything on PMR I've had it for 4 years but another thing is happening as well, we are getting older and that does not help with running etc sad but true. But it looks like you are enjoying life generally so no need to give up yet. I being tongue in cheek like your letter. Cheers re wine.
If you haven't used your leg muscles much for a long time they are bound to be out of condition. Does anybody have any experience of getting physiotherapy as they start to get better and have advice on this?
Love your Ethos Mark, I've been limping along with a flared up Achilles' tendon since November and now my other one is joining in. Tried going for a walk with two sticks but kept getting tangled up in them. Decided to just go with the flow and rest them which is easier said than done, used to be so active. Learning all about Patience lol.
Thanks Pebble-Sue, life can seem so unfair! But when I read some of the other posts here, I realise that things could be so much worse. I know what you mean about patience..
I try to get out once a week (leg lymphoedema as well as PMR) for some exercise. Thought I was doing well a while ago:-" I can walk around this supermarket,easily" How wrong can you be- not only did I struggle back to the car in the car park but also had 3 hours sleep as soon as I was home. As I like to do the shopping for my wife ( she works in a shop!) I am fortunate the local venues (ASDA, Tesco & Morrisons have Mart-Karts ( and helpful staff). How the mighty have fallen!!
I'm still waiting for diagnosis of my problems. I've just had a nuclear med bone scan and noone wants to touch me until I get results and in the mean time Im Just deteriorating.
Like you I was extremely active to my own detriment. I used to play badminton about 8 hours a week and did body pump and body attack classes and also took up waterskiing. I haven't been able to do a thing since the first week of November last year! I cannot use either arm so can no longer drive.
If I have no diagnosis and it turns out I just am very unlucky to have 2 frozen shoulders, it's still going to take at least 18 months to 4 years for me to get properly mobile again. The pain is excrutiating and as a consequence of not even a Physio wanted to touch me, my whole upper body has locked into spasm!
I feel crap most days and try to get out as much as possible. I can't dress myself or wash my hair and feel like crying especially when I try to do anything. I can't get clothes out the wardrobe and have to use a step just to reach the first shelf of the kitchen cupboard...
I feel trapped in a body that doesn't belong to me! Try to remain positive but sometimes very hard!
If it helps, before I was (eventually) diagnosed with PMR, I had what I thought was frozen shoulder after doing a lot of physical work. Like with you, it got worse and worse until I could barely function. It was hell.. A visit to my osteopath didn't make any difference, and it was only a prescription for steroids (prednisolone) that relieved the symptoms. After a few months of crippling pain and stiffness, he effect was startling and almost immediate.
If indeed you have PMR (I am not a medic, but it sounds like it from how you describe your symptoms..), the steroids have a miraculous effect in managing the symptoms and give you back your mobility: albeit that there is a trade-off further down the line (see the various posts here on steroid tapering and withdrawal symptoms).
All I can say is Push, Push, PUSH your GP for an urgent referral to a rheumatologist who will do the appropriate tests and confirm things one way or another. You also have a massive amount of expertise and support available to you via this site. PMRpro is especially knowledgeable, and I'm certain she will be of much help.
Try to stay positive in the meantime: with an accurate diagnosis and treatment, you can get back to something nearer to 'normal'. But you may-well have to take the lead / be assertive with your GP since many don't understand PMR fully or know how to treat it effectively (as you will see from many other posts here).
Two frozen shoulders? Maybe, but more likely to be PMR, or even more seriously GCA especially with all the other symptoms you describe.
I was being treated for a frozen shoulder for almost 18 months before GCA was diagnosed - in hospital A&E dept AFTER losing sight in one eye.
I think you need to go back to your doctors and specifically ask if you have GCA, and impress upon him/her the implications if not treated. That usually gets some action.
There have been discussions about Bowen therapy before and sambucca will sing its praises too. One of the things it has a particularly good reputation for is frozen shoulder - so it might be worth a whirl. It will almost certainly help you relax if it doesn't help the shoulders. It won't do much for the PMR itself - but it does often help a lot with the "add-ons".
Great post from Mark and followups. I am not running anywhere or even walking much anywhere unfortunately these days bur can honestly say it wasn't my fault. :-). I just realized that it's been almost a year since I developed severe pain in my right hip. Doctor of course thought AVN but an MRI showed a large tear in the tendon of the gluteal muscle, Prednisone induced probably nonetheless. Some days I am unable to put any weight on it and use a walker. On a good day can walk slowly with quite a limp. I've been told this will heal on its own but I doubt it will until I can get the Prednisone decreased which is difficult going due to GCA flares frequently. It's a worry. Wonder if there's anyone else out there who has had to deal with this. Perhaps I should start a thread on it.
Well first I'm so sorry that this happened but I really enjoyed reading your post for several reasons the most being so informative and the humor bringing some light to this illness.
You are so right in all you stated and yes at times we feel like we can resume all of our activities and yet we really need to be careful and not push ourselves.
I myself having been a very active female, speed walking every day and enjoying hiking with the grandkids & gardening realize that it may be a long while before I can resume doing this. Each day I try and introduce a bit more into my schedule.
I'm still in the process of getting a positive diagnosis and now going to the Cleveland Clinic in a few weeks for a third opinion.
My only hope is to take a new approach, I plan on telling my current Rheumy that I insist on his treating me as if he is sure it's PMR until I see the Neuro Opthmologist on May 18th, that he should follow the guidelines for tapering me with the slow method and to see if this proves beneficial. I cannot let him keep running uneccessary tests that are proving nothing, just showing arthritis which I already knew I had from previous tests. He mentions injections and I dont feel that this is the answer as I already had some with no satisfaction.
Well you take care, hope you have a speedy recovers and please keep us posted!
Thank you so much Shastring. Well, humour helps me to see the lighter side of my (relatively minor, in the big scheme of things) ailments and it's nice to be able to make others smile too.
I know we all have differing contexts, but it's good to be able to off-load here and share experiences as well as advice. As you and many others say here, we often have to lead / educate the health professionals in the process since so many either don't take us / the condition seriously or simply look for the wrong things.
Now, the gammy leg's already twitching and wanting to get moving so I might just give it some gentle (I stress, gentle) exercise later. It's not in my character to sit around unless I absolutely have to!
If you don't learn anything else when you have PMR it will (eventually) be patience!
I spent 9 months on crutches a few years ago - not the PMR but an inflamed achilles thanks to a doctor (and the pharmacist) not registering that Medrol and a particular antibiotic are NOT a good mix. It was a real nuisance! Crutches with PMR are not easy...
No supermarkets here have electric carts - bring your own wheelchair! But if you do have access to a supermarket with them, ask to use one. I was told that if customers don't use them during the day and run the battery right down then one of the staff has to drive around in the evening to do it. You'll be helping them!
Keep your feet up and rest that poor muscle! Pain is a sign you need to stop doing what it is that causes the pain - perhaps not altogether but a lot less of it.
Yes PMRpro, although I like to think I'm very patient with others, I'm the ultimate Impatient patient myself - 'could do better' :-(.
Re. Achilles problems, yes, I 'got away with it' last year (only a strain) at the same time as a similarly fit pal of mine ruptured his doing more gentle exercise. I put it down to being fit, active and supple for most of my life - I am fortunate.
This reminds me of my old Mum (rip) who, at age 82 was 'got' by cancer after a long, active and healthy life - she was a very robust woman to the very end. In her latter stages in hospital, she would complain about (q.) 'being stuck in here with all these old, sick people'! I think I have the same constitution as well as a (sometimes, but not always) healthy sense of denial.
That's my story and I'm sticking to it, but I do take your point about pain and rest in any context. There have been many times with PMR when I haven't even had the energy to get depressed, let alone leap around in the supermarket!
Now, let's practise the John Wayne 'swagger' and fiendish grin before I set-out for Waitrose... very gently.. before resting-up again tonight. While I'm there I'll eye-up the disability aids - but only when no-one's watching ;-).
They didn't have such things in the UK when I was in plaster for 3 months as the result of a skiing accident 20-odd years ago - just the old fashioned wheelchairs. I'd LOVE to have a go with an electric go-cart - as I say, they don't have them in shops here. Not that I have any desire whatsoever to NEED one - just WANT...
Ha! I should be so lucky (Egyptian cruise etc). Ok, I'll snaffle a cart for you when no-one's looking. Can send by FedEx. Do you want the basic or go-faster model with spoilers and racing stripes?
Off into the wide world of retail, will report later.
This is me - I too have learned to pace myself. Been fit and active all my life doing all sorts of sports into my 70's. Now approaching my 80th birthday I still try to do some sports and keep myself active and fit. It takes a lot of discipline to train yourself not to overdo it. I am in remission now but I'm still careful because you never know when the "beast" will strike again. Enjoy your life to the fullest and make the most of every day. We are all in this together.
Mark B, you are the man! No matter what we were before, PMR makes us all humble. But as we may still do the things we want, we need to go at a slower pace! We certainly know what each of us are saying 😎
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Any advice for first Rheumatology Appointment please?
