Please..... You experts! Is this the cause of this bloody awlful curse known as Polymyalgia.?
I am at my wits end as to why ?
Is it Stress?: Please..... You experts! Is this the... - PMRGCAuk
Is it Stress?
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Stifffingers
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44 Replies
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PMRproAmbassador
Stop puzzling your wits - give them a rest!!! It isn't worth it. Acceptance that you are where you are is a first step - and an essential one - to living reasonably well with PMR. It is possible! I think I do 
PMR is the name given to the set of symptoms which can have several different underlying causes, it isn't the disease itself. They include some nastier reasons, such as cancers of various sorts, and other inflammatory disorders such as rheumatoid arthritis and lupus. In our case it is probably an autoimmune disorder that makes the immune system unable to recognise body as self and so it turns on the body and attacks various tissues, causing damage to the cells which react with inflammation. That leads to swelling - which causes the pain and stiffness. Pred relieves the swelling - and so the symptoms. It does nothing to the underlying illness which chugs away in the background until it decides to burn out and go into remission - which it does for 95% of patients sooner or later but can take anything from 2 years to into double figures. The "average" is about 4 or 5 years, officially the median time on pred is about 5.9 years. And that makes it a better, or maybe less worse, autoimmune disorder to have - very few go into remission like PMR.
No-one knows what it is that causes the immune system to malfunction - probably years of different stresses on it eventually mount up and finally a straw breaks the camel's back. and it flips out. Having a Scandinavian heritage makes it more likely - but it isn't an inherited disorder. The stresses can include environmental and chemical factors, infections, physical and emotional stress and possibly other things. But no single one is responsible. Nothing you could have done or not done would have made a significant difference.
DorsetLadyPMRGCAuk volunteer
Stress is certainly a factor for many pre and during PMR and GCA.
As PMRPRO says the sooner you accept you have a long term condition - which can be managed quite well if you are sensible - the better things will become.
It is a nuisance and sometimes very demoralising, but it is not terminal and you will recover - just accept, take life in the slow lane for a while and enjoy the good days. Over time they do increase.
Take care.
Literally driven 1 mile , had a haircut.
Come home wiped out. My arms are burning! Is that taking it in the slow lane?
Some days the slow lane comes to a standstill! Especially this time of year.😉
You will get better, believe me...been through it! And came through it relatively unscathed- apart from loss of sight in one eye.
I’m sorry
Thanks. But no need to be ....doesn’t stop me enjoying life to the full!
I remember feeling just like you are in the early stages. I had so many (unanswered) questions, and was angry, frustrated, depressed, shocked and for a time denied that I even had PMR. How could this be? I had just retired a month before symptoms started and felt like I was robbed of the retirement I dreamed of and planned for.
Once I was able to accept my new life with PMR I went from focusing on why (as we may never truly know), to what I could do in the here and now to best live with this condition. I could take action and control of certain aspects of my life like my nutrition/diet, activities, and when I rested. I could also work with my GP to put in place a healing plan. My therapist and this forum all played an important role helping me process my sadness and frustration.
I’ve been diagnosed since May 1, and will say, it gets better as you are able to manage the condition (whatever parts are manageable). The rest is beyond my control and I have accepted PMR is going to chug away in my body with its own timeline I have no control over.
Having hope is imperative, and being part of this forum of well-informed folks brings me a sense of hope, strength and resilience to make it through the challenges I’m presented with.
I feel for you Stifffingers, this whole thing can feel very overwhelming! Please remember you are not alone, you have found us, who have a lived experience with PMR/GCA, and we “get it” in ways other folks don’t. Try to settle your mind, utilize all of your resources, and feel what you feel. You are not alone.
Leslie
Thank you all for taking the time & trouble to reply.I hear what you all say individually.
Like PMR Canada , I do feel robbed of my retirement , which I was enjoying. I too am frustrated , depressed, angry. I’m also feeling guilt ( i’m Sure I have brought this on myself), despite what everyone says.” It just comes”.
I hear you all “manage” it. I’m only exercising 10 mins s. It hardly seems worthwhile. If I go for a walk , it’s short , and I’m home and asleep. How slowly can one take this? I’ve put on 14 pounds.
I’m becoming a couch potatoes. Oh dear .....sorry to moan . I know, I know, there are people far worse off.
Merry Christmas to you all . I wish you all a Healthy New Year
Please try not to blame yourself. As you’ve read, they are not sure what causes PMR/GCA - stress, genetics, an infection or flu shot/immunization?? I too spent some time in the early days blaming myself for not taking better care of my physical health (weight gain, hypertension, lack of exercise). This mindset made things worse. Then I cut myself some slack as I realized I had prioritized my mental health, as I addressed my PTSD.
None of us “deserve” PMR/GCA! Neither are we prepared for it. But we do have to deal with it and the accompanying fallout. Baby steps.
It will improve - you are in early days. You can do 10 mins exercise now - that is 10 mins more than some people manage - and you will be able to build it up but you MUST do that slowly. I skied most days for 2-3 hours once I had got back into training each winter. Michdonn who is on both patient.info and here occasionally, was in a wheelchair and fuming after a flare about Easter last year. H
We coached him to start with 5 mins walking and built it up a minute at a time. He skied the entire winter season, teaching children, and gained an award as the best ski instructor in some class. He has spent the summer cycling with his friends. He lives at 2000m or so in New Mexico - and is 80 years old. It does work - I promise.
Thanks for the encouragement
That's why we are here - to pass on the ways we have got around PMR and pred. Come back in the New Year with your resolution and tell us what you do and like to do and we'll show you ways to achieve it.
Ha: Been asleep since.... Done nothing . 10 little minutes on a sit down bike. 1 Haircut, Ate some soup. Tv on ...Crash!
All I seem to do Eat & sleep, woke up ravenous again !
What do I like to do?
Used to do 90 Minute Hot Yoga Sessions, twice a week at least.
Body pump in the Gym . Swim , walk , general exercise.
Had a Personal Trainer twice a week to stretch me ( always was stiff!!)
What I do now is my daily 10 mins ( unless feeling poorly) . That’s it!
Hello Stiffingers, We can all relate to how you are feeling right now! Well done for having a rant in spite of Christmas Eve! It is bl**dy unfair, it is robbing our last smidgen of youth, and it could be a lot worse. I thought so, didn’t you? I mean thought it was something that might not get better?
Well it does and it might be a wake up call. There are a lot of selfless, workaholics on here. Stick with us! There are a bunch of wise bricks on here, they pull you through. Happy Christmas - pace yourself! X
Hi Stifffingers, I am sorry you are feeling bad right now. Good advice about accepting that PMR is now part of your life, but not easy to do at first. After a few years and lots of side effects. I started imagining pain and flares as a wave I was riding for for a few days when it was bad. Somehow made me feel in control as eventually the wave reaches the shore and pain settles down. I hope you feel better soon.
Thank you
What’s wrong with 10 minutes??? If that’s all you can manage at the moment, so be it. It WILL improve!
PMR is life changing, so we have to rethink what we do. In fact in my case it has slowed me down which may not have been a bad idea as I always said yes to everyone and I have now learnt to say NO, also I never asked for help and now I have been thoroughly demanding and act like lady Muck, what amazes me is that people are incredibly helpful. Learn to pamper yourself makes a world of difference.
Hey I have to give you my perspective. If I wasn’t careful I could slip into victim mode and I refuse (not saying YOU are by the way). I had a hideous abusive childhood and a first husband who beat the living daylights out of me. Years of trauma then fibromyalgia for 28 years cancer and meningitis. Constantly battling. Then six months ago I got this. I was super active as a kid. Swam for England at age 13. Strong despite everything and ran cross country. My health is now fragile to say the least. Been on hospital scores of times with frightening infectious needing iv. But I have decided that what the others say is spot on. This is the only life I am gonna get. It’s bad enough to have PMR I will not make things worse by being droopy about it. I’ve battled depression since the pred. I now have steroid induced myopathy but I am bloody well still gonna spray my hair crazy colours and dress up.
You are in a period of mental transition. It will pass but I beg you to work with it.
It’s been hard to write this and I am afraid it will annoy you but it comes with my love. Xxx. Linda xxxxxxx
Fab response brave Linda xx
Oh thank you. I guess some might say it’s over sharing but it’s my truth xxxxx
Btw. We all get the DF. ( deathly fatigue). I often can barely shower. I can’t make a meal. To walk ten mins seems an impossible fantasy. But it’s not always like that. The bad times are really bad aren’t they cxxxx
Hi for what it's worth, I'm not very good at accepting the limitations put on me by pmr so I keep doing too much the minute I feel some energy and get bitten on the bum by flares which is all pretty difficult to bear. I too have the guilts when I'm a total veg and cannot do anything, even having a shower is difficult and as for drying myself afterwards, I have been known to jump in bed wet and wriggle until I'm dry 🤣 When I'm ok I make a big point of making memories so that when I'm back in veg state I have something to throw back at the depression voice that tells me I'm useless, because like you, I'm not useless, just a bit restricted at the moment. I also know the bad times will pass if I can concentrate on getting through the next five minutes. Hang in there, it does get better and you will laugh again. Xxxx
Omg Angie. I thought I was the only one who does the wet bed wriggle!! I get out Of the bath all weak and faint and get in bed all wet until I’m not!! I haven’t told anyone that!! I also EVERY SINGLE TIME overdo things. I’m like a lunatic let out of jail. Xxxxc
Well at least you can get out of the Bath!
I get stuck . Can only shower now
Are you upset at my reply? I went out on a limb because you are worth it
I think this was a chuckle reply Linda, not an upset one xxx
No way! .. I was being serious, I’ve had 3 baths , got stuck every time.Havent got the strength in my arms to push myself up. , hence I can only shower!
No not upset at all. All advice & help gladly accepted.
Me too - haven't been in a bath for the best part of 14 years since I nearly got stuck. I could just manage our corner bath - it had a seat in the corner bit. Showers rule!!!
When I could take a bath, I had to turn over, on all fours and get up and out like that. Also used an anti-slip mat in bath. I have a lovely wet-room now.
Yep : done the all fours. Still got stuck !
Showers now
Although the shower is quicker, I do miss lazing in a bubble bath!
I couldn't kneel without a thick cushion which isn't too practical in the bath - even worse now!
That's awful!
Don't mind not lazing in the bath - never was a fan! Brought up in the 50s with a limit of 4in water and no top-up!!!!!!
Never quite understood how some people READ in the bath! Growing up in S.Africa, we have had our fair share of drought weather. I remember sharing the same bath water with my sister, and a brick was in the cistern of the loo. No car wash/topping up pools, no hosepipe use. Had to use 'grey' water for garden.In SA the ground turns to dust, whereas in England, everything is still green during a drought.
That’s a very sensible idea Karools xxxx
Get yourself a towelling dressing-gown, then you won't battle quite so much with drying. I have 1 as difficult to get my back dried, and on my own. x
Brilliant suggestion karools thank you! Xxxx
I absolutely think it is stress related... and also in my case trauma related. (bike car accident on top of bad virus. Lots of things cause the stress...Even Hot yoga is a bit stressful. I was competitive doing triathlon and running and biking a lot up until a couple months before PMR.. have had to learn to lie on the couch.. and find, lucky for me, I take to lazy bones quite easily. Not everyone does. But since you have done yoga this link to my relaxation-yoga will be easy. Hope it helps. sites.google.com/a/apps.hop...
Yoga Bonnie bless you for the wonderful link!!! I will be using it for sure. How are you doing today sweetheart?? Cxxxxxxx
Wow Bonnie how amazing. My sister used to be president of yoga Australia so I am very connected to it all. I am so impressed with your attitude well done!! How are you finding the poses with PMR? Xxxx
Stiff fingers did you see bonnie’s Wonderful link? Cxx
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