Retraction about Fibromalgia/PMR, see last post

Sorry all, I can see why I hit a nerve. If you thought I was saying a few times round the block will cure all those with PMR, try reading it again. This time where I've written PolyM read Fibromyalgia, it may make you feel less misunderstood.

Note to self - No matter how bright you think you are at 6am, it's your pm steroids talking and your interlect is not the rapier sharp tool you think it is. Read it after 9am then send.

16 Replies

  • Hi SnazzyD

    I didn't see or get involved in your other post, but this one is much appreciated.

    Users of this forum often have strong views on all sorts of things (understandably!), and sometimes no-one's categorically 'right or 'wrong' - more a matter of opinion / personal experience?

    Also, as you say, it can be easy for even the most careful of us to either get the intended meaning wrong / make it ambiguous, or simply make a gaff in haste - especially under the influence of the steroids (or anything else for that matter!).

    Your post is very thoughtful and I'm sure will be respected by others here who might have 'prickled' at it!

    Best wishes and keep posting... !

    MB :-)

  • In this case I'm not surprised. Here's this newbie with just GCA telling everyone to go for a run! 😂

  • Going for a short run wouldn't be a bad idea in my case - feeling like I need to get a bit more exercise now I'm less fatigued! There are a few here who've managed to keep-up a modest amount of running / horse riding etc through the tough bits of PMR / GCA.

    Everything in Moderation..? :-)

  • Part I think is some people don't understand how different experiences of PMR can be. There have been posts on all the forums from people with a born-again conviction that what they are doing will save the world from taking pred. But it isn't "just" other patients - I've lost count of the people who have been told by their doctor to go out and exercise. Which when you can barely crawl to the kitchen to get a cup of tea is hardly helpful!

    I couldn't run - but then, I never could - but I did do aquafit in a warm pool every day Mon-Fri for 5 years with PMR/no pred. I dearly wish I could still do it - but it simply isn't available (no fitness studios of that sort). I can't face the gym and machines plus they costs a small fortune for membership here. And am forbidden to use a "normal" bike. If someone can think of something I can do...

  • I found a warm pool/exercise class from a physical therapy place rather than a gym. I worked with the PT for some sessions and now just pay a fee to continue on my own. They take three patients and a half dozen past patients in each class. Maybe look for something similar?

  • No physical therapy places either - just physios working in an office as far as I know. Relatively little private work done here as the state run healthcare is very good and almost free. There are private trauma units - all at the bottom of ski runs and closed outside the ski season! A private hospital might have a hydrotherapy pool - but it is 70 km to the nearest.

  • Meant to say before - I read your post and got exactly what you meant...

  • I wish I could find your post, I want to be offended too!

  • I'm sure you could be if you tried hard enough ;-)

  • It wasn't mine. Look for How Can You Tell if You Have Fibromyalgia?

  • Thanks I found it. I have a Fibromyalgia diagnosis as well as PMR from the first Rheumatologist I saw, before I went to Dr Mackie in Leeds who hasn't mentioned it.

    There are occasions when I've had an active day with my daughter's toddler when I feel a pleasant buzzing, as if my circulation has really got going. A complete achey collapse follows later, perhaps the conditions compete?

    I have always been sceptical about the Fibro diagnosis though, it felt like a mopping up of the symptoms that didn't quite fit.

    Sorry for the facetiousness earlier, it is one of my many faults. I think we've learned a lot from this conversation and the previous one, I certainly have. Thanks.

  • I wasn't offended so much as worried! Any new member reading that might wonder what they've got themselves 'alternative' forum? Thank you for making plain your meaning, SnazzyD.

    I still can't run round the block and I've got Fibro too - am I doing Fibro all wrong? (Nothing would surprise me, given that my GP refers to me as 'a mystery' in letters to hospital consultants).

  • Fibro and PMR is a challenging combination indeed and from my uneducated standpoint, the PMR/Pred trumps the Fibro because to over do it has worse consequences. I'm a huge fan of exercise and keeping bodies moving, but personal limits vary massively. Although an exercise program is deemed important in treatment of Fibro, it has to be carefully gauged. When I first got Fibro, it occurred to me that although I hurt all over, my muscles were actually fine if I thought about it. It felt like my pain messages were wrong and this was borne out by what I read. The only other real help was a good night's sleep which I now know meant keeping in deep sleep enough per night. Given that it is seen as a neurotransmitter and sleep disorder, I'm not surprised that those with long standing pain related conditions like PMR get it. I expect the nervous system has forgotten what it is to be operating under normal conditions. What does Pred do to deep sleep patterns I wonder?

    You're "a mystery" eh? That's nice. Does that mean you've found the bottom of their fount of knowledge?

  • It has to be said that for some doctors that fount isn't particularly deep ;-)

  • No, I was already there! And as already said, sometimes the fount isn't that deep.

  • Hi,

    Don't worry, as MB says things can get misconstrued easily.

    Combination of medical and non-medical readers/writers, PredHead, personal opinions, mis-reading what's written, automatic predictive text (urrgh!) plus a myriad of other reasons.

    Think sometimes we're all guilty of thinking we know what someone's thought process is - when very often we can't fathom our own!

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