My first post was a question to which I got fabulous response and I thank everyone who helped me. I realized I had not made any sort of introduction so here goes... I’m a registered nurse from CA, 50 next month so not your typical PMR patient. This condition has knocked me on my behind. As another member said “ I don’t have time for this”. I had never heard of this disease and if I had it was probably in nursing school decades ago and I’ve forgotten. I’m still trying to wrap my mind around all the lifestyle changes and the need to slow down, which I admit I’ve not been successful at . I think it may be particularly hard when you are an age where you’re not even close to retirement. At least for me it is. I have to say that I have found more valuable information on this site than anywhere else. The internet would have you believe that you go on some Pred, taper like a good little soldier, and bam! It’s over and done with, go on your merry way. I’m learning it’s not quite that straight forward. So thank you all for this community. It feels like I am among friends.
Hello to everyone!: My first post was a question to... - PMRGCAuk
Hello to everyone!
You have to be a bit selective about what you read on the internet....🤦♀️.. even the so called experts get it wrong.. the patients tell it like it is!
And you're not that untypical - some enlightened sites even mention people in their 40s getting PMR.
It's hard for those of retirement age as well! ---you're falling into the trap that "youngsters" do - thinking that all retirees do is sit on their behind and drink coffee all day. Taint so!
But we'll let you off this time. 🤣😂🤣
Haha you’re right Dorset Lady!
While I agree with DorsetLady's last paragraph, I think it is easier to cope with these ailments when retired. I've always been grateful that I didn't fall ill until I had left the daily commute. The pacing that we all have to do must be so much more difficult when trying to do a job competently. If I need a couple of hours on the sofa, I can lie down immediately as I only have myself to answer to.
I do have to agree about the couple hours on the sofa. While I fortunately have a desk job, I did just return to work and it’s hard not to be able to go lie down when needed. Also, I do know everyone is different. I have a lot more empathy for our patients let me tell you!
Yes, I hope I was always empathetic towards people with hidden ailments when I worked for Transport for London. We were certainly encouraged to be. However I only got a true understanding of what it's like to be ill and finding it difficult to cope with everyday life when I became ill myself.
I agree with that! I always thought I was an understanding sort, but it took me getting this condition to REALLY understand. My late mother in law had rheumatoid arthritis and NOW I understand the fatigue. I don’t think anyone can understand that unless they’ve experienced it.
I can totally relate Richnroo! I was pretty unsympathetic to other’s illnesses thinking if they were on medication and did what they were supposed to do all would be well. This PMR stuff has been an eye opener for me too! And a good learning experience.
Agreed...but you would expect somebody of 50 to be able to cope better than somebody of 70 or 80.
Plus reply was slightly tongue in cheek regarding youngsters v oldies... I think Richnroo got that.
Dorset Lady, I did 
Good...my sense of humour doesn’t always come across in print or across the Atlantic!
Haha it came across! I love someone with a good sense of humor.
Like you, I was relatively “young” when PMR emerged (55 and had just retired early). Besides the physical challenges, it was difficult to come to a place of acceptance that I had this condition. Went through all the stages of grief as I felt angry that I had been cheated out of the retirement I dreamed of. I was in denial for awhile that it was PMR and negotiated with myself promising to adopt a healthier lifestyle.
Once I accepted my fate, it was easier to make adjustments, and I focused on what I could control (diet, rest, activity and support). I was obese, inactive and sweated the small stuff prior to becoming ill. Since then I’ve lost 30 pounds, got off of high blood pressure meds, and enjoy daily deep water exercise in the pool, walking, pickle ball and golf (with a cart). All activities were gradually increased as to avoids DOMS.
My biggest challenge has been to get below 9.5 mgs which I’ve tried 4 times unsuccessfully in the last 2 years. sigh
I feel for you given that you are still working, which, like you mention, provides its own set of challenges. Listen to your body and note your symptoms as you SLOWLY taper.
Yes, we do experience heighten empathy when we suffer ourselves. Ask us anything on this forum as we are likely to “get it” better than most.
Interesting that - it has been said somewhere that 10mg is a difficult hurdle. I wonder if they generalised and meant it was all or whether it is for a select group with one form of PMR? It is beginning to dawn on the researchers that there are several groups amongst PMR patients - Sara mentioned it in her webinar.
Thank you for the excellent advice. The more I read in this forum the more I learn.
Richnroo, I too am a nurse, was diagnosed at age 51 and have worked full time the entire journey, which is going on 9 years. It was not easy at first. The fatigue was challenging. I needed to scale back to no more than 8 hour days, build in rest periods, “let go” of lots like meticulous housework. I was lucky that my OH was able to do most of the cooking and chores and very supportive. I do think continuing to work kept my mind off dwelling on the PMR.
Thank you for your input! I agree it’s helpful to get your mind off the PMR. It’s easy to dwell on it. I’m still at such a new stage that I’m trying to figure out what my new normal is. I’m also so glad to hear from someone who was very similar to me at diagnosis. Besides rest breaks and help with housework any other tips?
Best advice I can think of is listen to your body and plan ahead. I would always keep healthy snacks with me, did not try to “keep up” with others, and got very good at advocating for my needs with family and friends (sounds easy, but very hard to ask for help when as a nurse we are used to meeting other people’s needs). It’s a bit tricky because we don’t “look” sick. So once you get a good understanding of PMR it’s a good idea to take the time to explain it to family and friends. Happy to share experience or answer any questions you have along the way!
Oh I also want to add that when I first got this diagnosis of course I was googling everything about it. Everything I read said “ once the patient starts on prednisone most return to their previous level of activity ”. I thought either there was something wrong with me or that couldn’t be right because a return to “ previous level of activity” was obviously not going to be happening. Who writes these things I’d like to know? Clearly no one who has had this disease. So glad to have found this forum.
Hi & Welcome
Afraid you’ll find that this is not a One Size Fits All Condition, though some of the Medics think it is 😉we are all a bit different but you’ll get lots of support here.
I’m would suggest you talk to Occupational Health or your equivalent about a shorter day or consider some time off until you feel it’s under control, it’s not so easy after the first rush of Prednisone & your body has adapted.
Kind Regards
MrsN
I was diagnosed in December age 63. At the moment we should be exploring CA to celebrate our ruby wedding anniversary (visited one part on honeymoon, back to see others)! Last year we hiked & ziplined our way across Colorado for three weeks. I cannot accept the four letter word ‘rest’, but, boy, do I suffer for my stupidity! Self inflicted injury we call it as I overdo it..daily! I also have OA & fibromyalgia, but a large heap of stubbornness keeps me going! Yesterday.....dug a channel through lawn, laid pipes, 2 hours digging...removal of 4 inches of soil from top of a border to put in extension to our irrigation system. Today we were due to go out hiking in our local forest (we have been inside our front gate since 24 February due to Covid). But my pain is too bad, I am barely upright & the trip is off! We can go tomorrow, it’s fine, just to give you a small story! My husband will continue to put in the water system today while I sulk (not really!) I took early retirement after working 20+ years for an American fine filtration company, so I’m lucky in that respect, good pension, no need to work! After six months I can tell you I don’t have time for this, either, & wont be bending to its ‘will’! Good luck!
But by leaning a bit, even if it is not bending, it makes living with it a lot easier and less painful!
Sorry, should have said, the pain was not related to pmr. I lifted some heavy shopping the wrong way & pulled my back muscles 3 weeks ago. Consulted my doctor & followed treatment & thought it was better! But the heavy digging made my back go back to ‘square one’ again! Mea culpa! S x
Ah yes - but it IS related to the PMR. It happens to me too. The underlying autoimmune disorder is still there, attacking the muscles and leaving them intolerant of acute exercise and actions. They are more fragile than they were and if you have a degree of myofascial pain syndrome as well it compounds the problems.
You are right, oh wise lady, as usual. I will try to do better, & push myself less. In my defence, when we bought this old cottage & a large garden which needed complete design & change, I only had fibromyalgia, no OA or PMR. For the first six years here we did some of the major work, but left a lot of it, too, & travelled a lot & had fun enjoying our retirement. But this means a lot needs doing here & the opportunity of lockdown means we have time to do it. Sadly, this also means I gave myself a deadline of end July & have therefore worked on many projects from complete redecoration of the kitchen to heavy renovation work in the garden. It’s great because I can see the results here now & only have a couple of large projects left, but probably lousy for my health.
Wow!!!!! You must be a dynamo! I cannot even fathom doing that much activity! Does it getter better or are you just pushing through it? And if you are pushing through it, won’t that ultimately make things worse? That’s what I’m afraid of.....
Yes, if you push through it, you will likely pay for it after. You also want to avoid injuries. Combination of PMR and Pred can weaken muscles and tendons. You may notice a loss of muscle mass, I saw it particularly in my calves, so one does have to be careful!
Sorry, as replied above it was pain from a recent back injury from incorrectly lifting stuff..I thought it was mended & I was wrong! Not PMR pain. I find walking helps a lot, but it mainly helps my fibromyalgia, I think, as other pmr sufferers don’t seem to benefit. The fatigue annoys me, but as long as I don’t get the shoulder & hip PMR pain I don’t think I’m doing harm. I have always been very active & still enjoy it all. I find the nights are the bad but, though, & little sleep night after night is what saps my energy levels. Good luck to you, & hope you improve! S x
Wow! That is quite a story! Oh yes I have concerns about the prednisone as well as I’m sure we all do. I’m definitely trying to learn as much as I can about this condition.
Yes and most internet articles I’ve read tend to paint a picture of a straight forward process, as if it’s just a minor set back. “ Be glad you don’t have rheumatoid arthritis!” and the like. I’m finding it’s more insidious that it would appear.
Glad it looks like the biological worked for you. That’s a long rocky road you’ve been down.
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