Hello all, I’m really just beginning my journey of PMR. I had never heard of this before. It came completely out of the blue. I’m a very fit person, doing lots of yoga, rambling & cycling. Never smoked, have drank a little in my past but very little these days. Usually a healthy diet also. So doing mostly what sounds to be good certainly doesn’t mean we don’t become unwell it seems.
So I am here to learn & try to understand what this PMR is.
Many thanks for allowing me to join. Many thanks 🙏🏻 to a lovely new friend I have just made who has had this for over 2 yrs, she has already been so helpful to me & introduced me to this forum
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Winnie311
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Welcome Winnie. I came down with PMR a year ago last July. I also knew little to nothing about it. I joined several groups, but this one is by far the most helpful. There are dedicated people here who have a breadth of knowledge that will help you very much. Feel free to ask questions because they are always willing to come alongside and support and answer.
Like you, I was very fit when PMR hit me. Active with daily yoga, walking, and/or hiking, and a healthy diet. At 64 years old, I felt I was in the best shape I’d been in in many years. And then one morning: bam! Could hardly pull myself out of bed.
Listen to the wise, experienced advice here about everything, but particularly about tapering Prednisone carefully. It will save you from flares and potentially from developing GCA.
Thank you Lenore58, I was away on a 2 week yoga retreat & started with a low back ache. Filled by going to stay at my daughters to help her with her 2 tiny children & noticed a few pains developing & thought I must be overdoing things. By the time I arrived back home, severe pains began & as you say couldn’t move in bed. The following 2 nights I was trying to sleep with excruciating pain. I couldn’t easily move to turn in bed etc. Decided l probably should ask to speak to a doc, was given blood tests & almost the next day was put onto steroids. All quite a whirlwind
Welcome to the club no one wants to join! During the months I remained undiagnosed I plugged my symptoms into some website and it came up with PMR which had to be treated with steroids. Not believing I could possibly ever have anything serious enough to need such treatment I dismissed the idea. By the time a new doctor finally diagnosed me I could hardly wait to get home and take my first pills! It takes a while to adjust to: having to pick ones battles, pace oneself, say no a lot more often, allow yourself to rest when you need to, or take a walk instead of doing something more vigorous. If nothing else we learn patience, and in my case I hope I've learned to have more compassion for others.
Hello HeronNS, thanks for your reply. I think I know what you mean now about picking one’s own battles, things are definitely changing. I was amazed after taking my first 2 days of steroids, it was like a magic wand had been waved over me!
Don't be fooled though - it doesn't mean you are cured, just that the inflammation is under control! Don't go mad and try to catch up on what you hadn't been doing - especially at this time of year.
Welcome to this club. It does hit you by surprise. Whoever heard of PMR? I thought it would be over and done in a couple of months. Harhar. It’s scary and up and down. You will learn so much! My only useful tip at this point is to lose weight if you need to and eat low carb. Enjoy friends and family and laugh a lot.
What a lovely reply Merryfield, yes laugh a lot & be happy 😊 fortunately I’m not overweight but have noticed an extra kilo pop on so fast, so yes I will watch the carbs better now.
Oh I was fine. This doctor was the person who diagnosed me after a year of repeated visits to a useless one and she always let me taper at my own rate, after starting me off. She may not have realized that I didn't know anything about PMR! I learned a lot from another forum, a bit like this one, and I got enlightened fairly quickly.
Morning Winnie311 and welcome to the forum. You have a diagnosis of an illness/disease you had, like most of us, probably never heard of and which will most likely last for a number of years. There is a lot to get your head around and there is lots of very useful information and help in the FAQ's. Dip in and out and don't try and get your head around it all in one go. Don't hesitate to ask questions there is always someone around to listen and help.
Thank you Bcol, so right it seems there is too much to know right now (definitely for me) I will definitely be asking questions soon. Thank you for helping
At least you have someone to talk to F2F about PMR -many don’t have that luxury at the beginning… and to be honest, PMR isn’t a diseases that naturally goes for those already unwell, in fact the very opposite.
Just a bit of advice when you ask another question [which you will 😊] if you mention that in the title it will bring up related posts…
Thank you DorsetLady, that’s good advice that I would have thought of mentioning in a title. I will definitely find the FAQ’s also. Wow, so it’s not unusual to have gained this PMR while being a well person 🤷♀️ …. I am already learning
Not in the least -most seem to have been very busy people one way or the other…. It’s not the disease that “little old ladies get” as portrayed in many articles…. 🤣😂
After reading all these posts from people who have lived a very healthy lifestyle, I now question why I was so nutrition-conscious. Many of you amaze me with your active lifestyle and attention to health. I guess that means we shouldn't blame ourselves for being overly-stressed or whatever. Wouldn't it be wonderful if they could pinpoint the cause of our disease?
Both genetic and environmental factors are involved along extreme stress which exceeds the normal stresses of everyday living [be it medical or physical]. That over time puts your immune system under extreme duress, which eventually goes haywire and attacks itself.
Unfortunately you cannot do much about the majority of those factors. … and there is not one simple answer.
welcome. Honestly after reading so many openings from new people, yours could have been from any one of them; it’s a familiar lament. It’s a blow when one does everything ’right’ but one’s body still goes into self attack mode. It does change your life and a lot of the challenge is getting one’s head around the vagueness of its trajectory.
You’ve come to the right place. Great to hear you’ve got a buddy too.
Pred does tend to make the mind race. It’s not permanent it doesn’t help settle oneself down to assimilate the mountain of information that comes your way.
so glad already to have joined onto this amazing & helpful group SnazzyD. Yes I feel so fortunate to have met this new buddy (via a friend) My head is buzzing at the moment with the realisation of what is happening . Thank you for helping
Hi and welcome - education about PMR is why we are here. Why leave people to learn the harder way when we can explain and encourage? We don't do woo or sensationalism, we may be a bit direct sometimes - never meant personally - but are here to help in any way we can.
PMRpro, thank you & I am so glad that everyone is being honest & straightforward. I will soon be popping up with many questions eventually. Still just trying to get my head around it all
Hi from a fellow newbie. I came down with PMR in August this year and had never heard of it before. It was all rather sudden and because of that, I found it very bewildering. It is certainly an awful lot to get your head around. I have found the adjustment of going from reasonably fit to not fit at all a bit difficult. Best advice, listen to the experts and read the information here on this forum and don’t try and force your body to do what you think it ought to be doing based on your previous fitness. I also got Kate Gilbert’s book, which was very helpful. All the best.
I forgot to say as well, be aware that you are more vulnerable to infections. 2 weeks after starting Prednisolone, I picked up Covid, which pegged me back a bit further. You have to learn to take care of yourself a bit more. I have gradually learned that you have so much energy in your piggy bank for a particular day and you have to decide how to spend it. On another day, you might have more to spend or a bit less. It varies and you work things out accordingly and its a learning curve.
thank you Indigo, yes I am definitely feeling bewildered right now & confused about my head getting round it. I’ve already cut down on my 10 mile ramblers to just walking 4 around where I live. Just concerned of being out of reach in the hills if there is a problem.
I haven’t done anything like 10 miles for quite a while. I was feeling quite pleased earlier this year when I did two walks of 6-7 miles, as I’ve also got Trochanteric bursitis. Then, it all changed at the start of August, practically overnight. I was fortunate to get a diagnosis fairly quickly and got on Pred. mid September. As I said before, it was a steep learning curve and I’m still learning, as I managed to taper to 9mg from 15mg without too much difficulty. I know it’s going to get trickier the further I go. Taking note of the tapering advice on here, thanks to all the people who have already been there.
welcome Winnie, I hope you have a smooth journey with your PMR.
One thing I would like to add is that your doctor should check your blood sugars as prednisolone can spike your sugars. My doctor apologised to me for not checking them as I discovered 3 months after my PMR diagnosis that my sugars were in the type 2 diabetic range. A change in my diet to low carb sorted this and I have been in remission since the next blood glucose test.
I am so glad you have found someone to talk to with PMR and this forum helps so much. There are also Support groups around the country.
Thank you Koalajane, yes I already am pre diabetic & so my doctor says she is keen to lower my steroid dose asap. At the moment I’m not sure I could cope with more forums at the moment, this group is obviously so helpful & so fast I have lots of replies
If you aren’t already on a very low carb diet, do yourself a favor and go on one. It can seriously help your pre-diabetes. A “healthy keto” diet (healthy fats, no processed meats, lots of veggies) can really help.
thank you Lenore58, I know this is good advice, Thankfully I am already a lightweight & eating an extremely healthy diet of vegetables, salmon & sardines . Yours is a good reminder for me to always carry on.
Pred can have an impact on diabetes-but as KJ says restrict carbs - I was pre diabetic on very high dose for GCA but bloods sugars soon returned to normal as I dropped Pred. And I’m talking about 60-80mg Pred, some doctors get a bit too twitchy about lots of things.
As you have met someone nearby who has PMR they may well go to a local group, if so tag along - it is helpful to talk to others in same situation - and a list of local groups can be found here -
Yes I’m sure you are still trying to take it all in… and give yourself time it’s a big change in circumstances.
As I said, there is always someone about if you just need a bit of reassurance or a moan [that helps a lot at times] - we’ve all been there…and understand.
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