I was diagnosed with PMR in July 2022 after 2 months of sudden onset of symptoms. I was very fit & healthy at time of first symptoms.
I am using DSNS weaning regime & down to 7mg & had 2 flares during this time. Currently stuck on 7mg for a month due to slight hip discomfort.
My question is less about managing the pain but more about the other issues I find difficult to manage. I'm unsure if they are symptomatic of PMR or the reaction to diagnosis?
Does PMR cause a lack of volition & ability to pursue meaningful exercise? Not a problem I had pre diagnosis.
Also emotionally "flat" particularly emotional during "flares". I have aged significantly since diagnosis & can't see a way forward. I am unable to accept this is the new me.
Apologies for the mournful tone of this letter but looking for some positive feedback.
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Flinders61
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I think many of us would agree about the lack of motivation and ability to exercise - though I'm not clear what you mean by "meaningful exercise".
Much of it is due to the underlying autoimmune disorder that causes the inflammation and I suppose it is possible that not entirely adequately managed inflammation could have a simialr effect to depression.
There are research papers on the aging effect, the first called "I suddenly felt I'd aged", I believe she did a follow-up but I don't have a reference for that.
Thank you for your response, I will read the article.
By meaningful I mean actually working up a sweat or managing more than 1 Pilates class. If I push it to any degree it seems to lead to an aggravation of symptoms & I am aware that rest & recovery is important when weaning.
There was discussion recently about the role of exercise in PMR and it is very similar to the situation in ME/CFS. If you ask muscles that are suffering from those sorts of autoimmune disorders to do more than they are able. then you risk making them worse not better. If it were a case of briefly worse and then they recover, that is one thing. However, in ME/CFS it can cause a relapse and worsening of the illness and sometimes it never recovers.
It doesn't mean it is for ever. Skinnyjonny was in a wheelchair at diagnosis - within weeks of training for long distance runs and climbing mountains and an active firefighter. Some years later and recovered from PMR, just before Covid appeared on the scene he climbed Annapurna IV. He had to start with hydrotherapy.
I think you may have answered yourself in the comment - I am unable to accept this is the new me.
It is the new you, for the time being, it won’t always be….. but you do have to accept that for the time being you have an serious, systemic illness that means you cannot do all the things you did before - or at least not at the same intensity.
Many seem to think that accepting you cannot do what you could pre PMR is giving in, it’s not, it’s coming to terms with your illness, and taking control of what you can do… and you still can do a lot of things you enjoy.
Found this quote when replying to another member - many feel the same as you, especially if they have been very active before PMR hit
Don’t let what you can’t do, interfere with what you can do.’ [John Wooden (1910-2010), NCAA basketball coach]
Would also say that at your present dose, your adrenals may be struggling to re-awaken - something else that doesn’t last forever, so may have a read through this -
Acceptance isn’t easy for most - you suddenly feel you are not in control of your body, but you have to adapt and learn the “new you’’… and like it as best you can 😊…
I really struggled to understand what was going on when diagnosed with GCA. Sad, mournful - absolutely. It’s over a year ago now and what I found helped was to say ‘this is not me for now, I can’t do x for now’. In the last year with careful pacing (read the Spoons theory) I’ve been on holiday abroad three times and even got to an amazing all day gig in London with friends recently. I took three days to recover from that but it was worth spending the spoons in one go! Gentle exercise when I’ve been up to it and rest, rest, rest, especially in the early months. You’ll get to understand what your body needs. If you struggle with insomnia due to the steroids seek help from your GP. I wish I had done that earlier as I suffered for over six months and became depressed as a result. It will change. ‘This’ is not you forever.
Thank you, I do agree it’s better to be realistic and live in the moment but it’s challenging when you realise just how long this disease may linger. The diminishing of what is possible is awful.
To be honest of the many illnesses you can get, PMR [although a pain in the the proverbial as well as many other places] is manageable and in the main goes into remission of it’s own accord… what many people cannot get their head around is there is no guaranteed end date.
That affects the patients’ morale, especially if the doctors are part of the ‘it only lasts 2 years’ brigade - and not in the ‘it lasts as long as it lasts’ camp.
I disagree here - it may not be the PMR but the preds have certainly done damage to my body, leading on to lots of other conditions that docs say they cause!
I meant in the way RA or lupus cause damage to organs and joints, I've been on pred for 14 years and can't identify anything serious due to the pred - it is quite individualistic, But I did also take evading action - low carb diet, calcium and vit D. My heart problem was due to PMR not pred though pred would often get the blame, my very raised cholesterol is due to Actemra not pred.
I, like so many others, understand your frustration and sadness. I've had pmr for just over 4yrs now and have had to let go of so many things I could do pre-diagnosis....
- I was medically retired after numerous unsuccessful attempts to return to my job teaching nursery children in a primary school.
- I can no longer spend a whole day out walking in the countryside
- I can't stand for long periods
- I can't go out in an evening to the theatre or similar
- I can no longer exercise at my optimum level at my gym
It would be so easy to allow these (and other) losses to drag me down into a pit of self pity and despair. When I was forced to give up the job I absolutely adored, believe me...I felt like doing exactly that....but only for a moment, because I decided to put what energy I still had left (and that wasn't, and still isn't, much!😄) into focusing on all the things I can still do, so!.....
- I can't do a full day's teaching but, I can go in to class as a volunteer helper one morning or afternoon a week...and I do!
- I can't do long walks, but I can walk around the meadow & river outside my house
- I can't stand for long periods, but I can walk to my local library every Thu morning to take my books back and have a chat with the other villagers at the library coffee morning
- I can't go out in the evening but I can enjoy a meal out at lunchtime with the girls
- I'm not as 'capable' at the gym, but I can do some gentle walking on the treadmill for 30mins
I've fully accepted that my new limitations are unavoidable (for now!) so I'm embracing all the things I can still enjoy.
I've even found joy in some new interests, such as stone art, painting, knitting, ornithology, gardening....all things I'd never have considered doing if I hadn't developed PMR.
Yes, your life will have to change for a while. You will have to adapt to your new limitations, and you will probably feel old.....but not for ever.
It won't all be rosy and things will go wrong from time to time so it's ok to have an 'off' day when you feel down. Just try not to dwell on it for too long or you'll end up not recognising & wasting the moments of joy and happiness that can & will still come your way.
Acceptance & patience are the key to 'success' with PMR.
You will always find lots of support here and many, many people who can truly understand what you're feeling right now too,
We've all been there ourselves at some point so hang on in there. It does get better.
I was the opposite in the early months whilst on the higher dose of Pred. At the beginning of the first lockdown I had the energy to spring clean every room and could still walk 3 miles or so when allowed.
Now I have a cleaner and can only stroll. Perhaps that’s where I went wrong 😌🙈
Interesting how we react differently. In 2016 I was diagnosed with Oral Lichen Planus and put on 40mg pred for a week, then shortish taper. Terrible insomnia, irritability, jitteriness but energy like you describe, up at 5.00 am ironing! When I was presented with 60mg pred and told by the eye doc in Casualty, take these NOW, I balked, ‘oh no the drug of the devil’, remembering the 2016 experience. They saved me but I didn’t react the same way as before, having a total wipe out plus chronic insomnia. I’ve muddled through this year but like you got a cleaner and have a better balance of activity and rest. I’m not the Duracell bunny I once was but that’s no bad thing.
Indeed it is such a common lament here, “Before this I was fit and active and now…”. I’m no different, on the Friday in 2017 aged 54 I cycled 8 miles to work, did my job all day, cycled home and was very sporty. By Monday I was a heap on 60mg Pred after a sudden diagnosis of GCA. That was that. As with any life changing accident or illness or life event, you have two jobs; to heal and to grieve the life that you had. I say, “had” because in some way, you won’t be the same, but as to how much you’ll be different requires patience, perseverance and time. The new you, will emerge and it can surprise and be very positive. I certainly found out that I could live a different way and it forced me to drop a load of unsustainable ways of being, mostly predicated on not getting old and never saying no! The most tears seem to come when people try to shoehorn their old lives into the new to reassure themselves that they’ve still got it or trying to keep an income. Yes, many of us are guilty of occasional inadvisable feats just to give ourselves a boost, never mind the consequences. I love the quote from DL from John Wooden.
Firstly, you are just a year in. Early days! Now that can seem depressing, but actually it means there is still room to get better; you haven’t hit top yet. Secondly, you are on a level of Pred that can feel a bit bumpy. It can be a bit high for your adrenal glands to realise they need to make a bit of cortisol to bump up what is no longer coming from Pred. But it can be too low to give you enough cortisol for the day. One can feel depressed, tired for no good reason, fluey, empty and shaky. I didn’t feel much improvement until 6mg when the body started to get the idea. Have a look in ghe FAQ’s for the bit about adrenal glands. However, only a year in, you might be below what you need for the PMR.
You haven't aged significantly or become a different person, you have become ill. You have a significant disease which like most significant diseases causes you to tire more readily and various other things, whether the sufferer is 20, 30 or 60. Why would you think things are or ought to be the same when you are ill as when you are well? You actually say 'not a problem I had pre-diagnosis'. . Would you have said that if you'd been diagnosed with practically anything else, anything from cancer to flu? Some things can be more or less normalized, some not, meanwhile sit back and enjoy the summer or I guess in your case winter.
I believe that low-dose naltrexone, which boosts endorphin production, has been responsible for keeping me (mostly) free of the doldrums. In some ways I find I am more optimistic than I was before PMR (and LDN). But still, sometimes it is hard to get started on a physical project. I know there are others here taking LDN and I wonder if you have found the same boost.
My daughter uses it for autoimmune thyroid problems and credits it as being very good, the antibody levels have fallen to normal. She says there are a lot of PMR patients who post on the UK site.
There have been a few people who posted to say they were starting it - one in Norway where it is used by mainstream medicine but she never came back to say how she got on.
You will get nothing about it from mainstream medicine in the UK! Strictly private proponents. There have been no reputable clinical studies in the PMR field and even Sarah Mackie decided if it sounded too good to be true it probably was. However - it is available and safe so possibly worth the try, I would if I was in the UK after my daughter's experience.
Hi, I was to all intents and purposes reasonably fit I thought pre diagnosis and I think the absolute sudden onset is one of the things that's hardest to come to terms with - hence the depressed 'flat' feelings. I also absolutely feel that I no longer have any 'peace of mind' - there are so many things to worry about with this illness and what it might lead to. It really is a nasty, surreptitious thing!!
Because I believe that worrying about things that I couldn't change was a major influence in my developing PMR, I just have to respond to your final sentence.
Please keep reading this forum - the breadth of experience, both positive and negative, I was able to read about here, was immensely helpful to me - ( I had a consultant of the ' this will last18 months' school and a rigid pred prescription. At the very least, my sanity was saved by my reading, on this forum, about slow tapering.)
and take a look at the Frequently Asked Questions - I believe you will find positive answers to help you deal with all your worries, and advice about avoiding the 'developments' that you fear. One of the slow tapers shown on here got me off Pred in 4.5 years with only one flare (in the last month or so) and the consultant 'signed me off' with a 'prescription' for a maintenance dose of 1 mg a day but more if I experienced symptoms that indicated I needed it. So far that has not been necessary.
Whatever you do, please try to reduce your worrying - especially worrying about the unknown - by taking all the information you can from this wonderful Forum.
I was diagnosed with PMR in April . I have become very slow at tasks & so exhausted . It’s a combination of pmr and the steroids . Which I’m tapering off at the moment . And yes , Unfortunately I feel I’ve aged . But hopefully I’ll feel better once weaned off and flare has completely settled .
It’s all new to me too . I’m so glad I’ve found this forum as it’s a great support . You can definitely feel emotional on steroids .
I, too, was very active before PMR (Dec ‘22). I’m having the same issues that you are and try to remind myself that PMR isn’t forever. I’m stuck at 7.5 mg of prednisone but that’s not forever either.
I try to set one large goal each day - today I’m taking 2 grandkids to a museum in a different city- and try to choose that goal mindfully. Some days it might be something that seems tiny to my pre-PMR self.
I’m a yoga and meditation teacher and highly recommend both for some relief from stiffness and also depression.
I agree it's hard to adjust. Some days I feel blessed when I realise that it might not be permanent. Other days I feel sorry for myself and literally cry at the pain and loss of what i was. The hardest part for me is that I look well and my family and friends just don't understand that some days are good and others not so. What it has taught me is to be more empathetic towards people with chronic illnesses. I feel I am a better person for that at least. I agree with the person who has taken up other hobbies. If you have a new interest then it takes your mind of what you once were. What I do seem to notice is that a lot of the people on here were all active which is why it hurts us more when we can't do what we used to do. I did walk 6 miles a day with my dog in the countryside. Now I walk a mile to 2 miles (on good days) but I still do that in beautiful surroundings so I feel good. I listen to the sound of rain on my phone. It's little things but it's made me feel better and crossing my arms around myself and giving myself a hug. I hope this helps you towards feeling a little better.
It does make you wonder if the kind of person who is always active is also the kind of person who might be more prone to getting PMR.? Or maybe we are just more likely to notice that life just pulled the rug from under our feet? It does seem to be a theme in the conversations. I blamed the amount of long term stress that was in my life and I always pushed myself far too hard to achieve both mentally and physically, so in my case, I almost feel like it was self inflicted. It feels like my body said, enough is enough!
"Or maybe we are just more likely to notice that life just pulled the rug from under our feet? "
I think that definitely has a lot to do with it. And age - many who are older when it starts accept it as advancing age. Which was what my GP claimed at first which I wasn't having as I was only in my early 50s - now in my early 70s with well managed PMR I can do more now without pain than I could then! I'm by no means as fit though.
I've pondered on that too, whether age at onset might make you more sanguine about it all. I'm blowed if I am ready to throw in the towel just yet, if only I could just find the energy. 🙄
I think it depends where you are - my GP was probably going by local 50 year olds in the NE. Certainly - although not from the NE, my cousin is several years younger than me and she and her husband always made me feel very fit and healthy!!!
Interesting when you look around you, isn't it? I keep reminding myself that even though my stamina is not what it was and I find walking very far painful, how many soon-to-be 65 year old women without PMR are able to swim a kilometre in one session, even if I do have to sleep it off afterwards. I don't know many.
I was diagnosed at 56 and felt exactly like you - robbed of my active retirement years. I agree with others it doesn't help when doctors expouse this 2 year myth and also when you look well from the outside. I too suffered with poor mental health and frustration at not being g able to exercise However 3 years after diagnosis I was off steroids, thought I was left with a lingering weakness in my legs which stopped me walking far but this to has now passed. Wouldn't say imback to pre pmr state but probably 80% and, as others have said, I count my blessings every single day
Not a lot more to say really, however I will!I did feel I'd aged about 20 years in the beginning. Now when many of my friends are saying how they're able to do less and less through ageing, I'm saying how wonderful it is that I'm able to do more and more!!
Advice from an elderly friend was :
Accept - what's happening
Allow - it to happen
Align - yourself to your new reality
Advice from a homeopath was find something creative you can do within your limitations. That took me into rediscovering art.
I then discovered singing which has become a huge part of my life. I don't think that would have happened without the PMR.
About a year in I was fortunate to do a course (on the NHS) called 'Living with long term health conditions'. It covered aspects like rest, exercise, pacing, planning your day, morale boosters, how to manage setbacks, how to talk with health professionals ...... I do think it would be helpful if everyone diagnosed with a serious long-term illness could do something like this.
On the other hand - I sang all my life. Until PMR, which totally messed up my breath control and then I lost control of what note came out which wasn't helpful singing in a choir.
Hmmm - that explains my ability to carry a tone and sing in a very low voice is in direct proportion to my PMR symptoms. I only sing lullaby's to my Grandchildren, but I can´t when having a flair....
The emotional and mental health aspects of coming to terms with having a chronic illness are often overlooked and there has to be a grieving process associated with loss. And as we know, grieving is individual and takes as long as it takes. I would expect that how well an individual adjusts depends on how flexible and positive our personality is and what kind of support network, we have.
I am also really suffering the same kind of inertia that you describe. Depression and fatigue are commonly listed as symptoms of PMR, along with the musculoskeletal issues, but it is difficult to tell how much of that is due to being chronically ill and how much is specific to PMR. And I do feel ill, every day, and some days, I feel very ill. I was never in the same level of pain as a lot in the group and I respond really well to a fairly low dose of prednisolone, but the fatigue for me has been overwhelming and I see no signs of that improving yet. It has sapped all my motivation and interest and enthusiasm for anything. I have always been a positive person and could make the most of any situation, but this really has got me beat for the moment.
Yes, there are things that I can do. I can still swim, which is a blessing, but if I can summon up enough energy to leave the house, even to walk as far as the back gate, that is a major achievement for me. If I do get out of the house to go to the pool a couple of times a week, I have to sleep for 2 to 3 hours when I get back. Apart from that, I've not been able to read a book, or watch TV, or do any of my crafting projects, because the tiredness and brain fog means that my concentration is close to zero. There is no way that I could work as I am. I try to believe that that will improve. I'm holding on to the often comment on here about the adrenals doldrums and that I will feel a lot better when my little walnuts kick into action again.
hi flinders. You sound like me: have always done exercise. But I don’t know if it’s the PMR or the fact I’m now 71 has “aged” me and made me feel more tired.
I Think the key thing is moderation and not overdoing things. We came back from a10 day river cruise last Wednesday and it involved a lot of walking tours. I couldn’t believe how tired I was when we got home.
Apologies to inflict my whingeing on you & causing you to snarl. I was reaching out for advice & I guess you gave yours based on your own suppositions. Your response was unhelpful.
If we can’t have a whinge on this site with people who understand our conditions where can we? Whinge away. We’re all at different stages and starting points, many of us with other conditions as well. I’ve whinged when I haven’t understood what the hell was happening to me. I’ve had superb support from people on this site and have learnt a lot about GCA/blood tests/pacing/steroids. I suffered from depression after months of steroid induced insomnia which is a strange ball game that only those who’ve suffered it can understand. Thank you to all who have posted messages and advice that have got me through the tough times. This site as a whole has been a valuable support and I hope I can occasionally offer similar help to others now I’m over a year down the line. PMRpro has said, things will be better in a year when you look back. As ever, she’s correct. I spent the first couple of months after diagnosis in shock and very poorly. Things do change a year on and if I can metaphorically hold someone’s hand through the process then I’ll do so.
I really appreciate your reply. Whilst fully aware there are many more awful things I could be dealing with but sometimes we are allowed to drop the ball & feel overwhelmed. If not on this forum then where? Like you I have been helped enormously by peoples input & have very occasionally been able to give back. Thank you for the hand holding.
I would on top of all the other answers advice you to read about Fatigue and Brain Fog, symptoms seen in most autoimmune diseases, and now in long covid also. For me these are the worst symptoms, because prednisolone usually manages most pain if I do not move too much.
I have a trick question for myself when too tired: If someone was to invite me to do a dream thing, like take a plain to a beautiful beach or go to Rome or Paris - would I jump up and say YES!!? If not it´s the PMR. Then I know that I am not lazy or depressed or whatever...
It is the inflammation in the body. Like recovering from a serious flu: You feel fine, in the sofa or in bed and think you are ready to go back to work, but after your shower you need to go back to bed... completely exhausted.
Try to find a balance (I struggle after 4 years still), so you do not overdo things and worsen the symptoms.
When I was recovering from major surgery I felt like I was past PMR and finally in remission, but it turned out, it was the forced bedrest that was helping my PMR - food for thoughts - is it not
I see many others have commented ref emotional aspects etc but I would add that if you have had 2 flares in the last year it looks as though you are trying to taper too quickly.
It's taken me about 5 years to go from starting dose of 30mgs to current 2mgs pred, with (touch wood) no flares. On the way down I paused at 10 and 5mgs for about 3 months.
Agree with other comments - feel as though you've suddenly become old!
hi Flinders61, I was very resentful when at 60 the PMR was confirmed and I felt would have to give up the things I enjoyed doing, mainly driving my pony in a carriage and actively involved in club activities. I stepped back for about six months and let other people take the strain, attended a well-being craft group, and cared for myself better.
Like you I followed doctors advice and tapered too fast in the first year, butI did get back to being able to drive my pony again after six months and now at 66 still do that and also ride the pony, thanks to my own management of the pred dose.
I was lucky in that the steroid did not significantly alter my general health or weight, so I don’t look much different now and still have an active lifestyle. I stuck at 8mg of pred for over four years which allowed me to live the life I wanted, with plenty of energy and manageable emotions. When I reached the right time, six years later, I tapered to 5mg, which is where I remain now, still juggling my life around the daily dose and doing “my thing”.
I do hope you reach a place where you and your PMR can live in harmony, then you will probably feel you have your life back. Best wishes, Chrissie
So many differing approaches to tapering. Often driven by personality, I wanted to taper quickly, be rid of PMR & back to normal ASAP! Ended badly of course. I’m slowly learning but not quite at the stage where I can relax enough to think 8mg for 4 years. However I will now just stay on my 7mg & go with it. Thank you.
I didn’t expect to be stuck at 8mg for all that time either but PMR is so very unpredictable and, as you have found, cannot be rushed. I fell for the same old ruse about it all being over in two years, haha. But it is mostly liveable with and in the six years I have lost good friends to other illnesses so I guess I am the lucky one. I’m sending positive thoughts and hugs. Chrissie
with regards to feeling “flat”, think that was one of the first symptoms I had before the pains set in! A friend made the comment after my diagnosis that I hadn’t been my usual bubbly self for a while. I do still get occasional times where I feel like I’m just observing life rather than participating, but thankfully, as I’m now down to 2/1-5mg Prednisolone, those occasions are less & less. It will improve!
The flat feelings are unpredictable which can blindside you. Steroids are definitely connected to mood changes but I find lower moods seem to be mirror small flares in physical PMR symptoms. 🤷♀️
I've only just noticed your response and feel compelled to address it as I feel you may have misunderstood the purpose of this forum.
It serves several purposes:-
- to provide reliable information about PMR, GCA and all related concerns.
- to provide regular updated information on new research and any potential helpful findings..
- to answer questions put forward by all who need some answers.
- to offer trustworthy advice
But most importantly
- to provide a network of caring and non- judgemental support.
This is a life changing systemic illness for the majority of people diagnosed with it and it will impact hugely on most people's lives.
When newly diagnosed, it can be a very scary and bewildering time and some people will need more support & advice than others.
This forum provides a safe reliable space to share and celebrate 'successes', but it also
provides a safe reliable space to seek reassurance when things aren't going so well.
Whether the condition affects a person mildly or severely, the limitations it brings (and there will be limitations) will have some sort of an impact on both their physical & mental health & well-being.
None of us have a right to judge whether someone's 'suffering' is worthy enough to post on here and I would personally find it wholly unacceptable if anyone were to feel they shouldn't or couldn't express how they're feeling, or seek advice, support or reassurance on here as a result of them reading your response.
I have read your bio and I can see that the condition has affected you too in different ways. You've definitely had some challenges to deal with but I'm pleased you've felt able to navigate your way through some of these challenging times.
In my experience, this forum has always offered support by working on the premise of kindness and understanding rather than judgement & criticism and although I fully accept & respect that your opinion is as valid as anyone else's, I have to tell you that I personally don't consider the content of your post as a particularly helpful one.
We are all different and the amount of help we need to see us through will vary and be dependent on many different factors and many different sets of circumstances, but just as the forum is here to support you, it's also here to support anyone who needs it's help.
What a brilliant comment. I agree with you completely. I am 5 years and a bit into my PMR and GCA journey, and walking is still a major pain, thighs and hips. Before, I could, and have, walked all day. Now I expect my thighs to explode, sometimes after only 5 minutes of walking. But we have to make the best of what we can do, and as you say, snarl at wingers who think it's the end of the world. It isn't, it's just a new way of life, enjoy what you've still got. Trevor.
I expect we all feel some of the things you mention. 'Aged significantly.....emotionally flat.....can't see a way forward.....unable to accept that this is the new me' - these are the phrases that resonate with me. But I do rejoice at the fact that I can walk, see, sleep, laugh....and there are so many people worse off than me. I don't understand why I've been hit with this disease which has snowballed into worse (peripheral artery disease). But I'm still fighting, I won't give up! You may get over it quickly- some people do, and are back to their old selves! And while you're going through it you will have ups and downs. Try to accept whilst still keeping positive. But feel free to use this forum as your counsellor- it always gives support. Don't take any notice of criticism you may encounter!
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