I am a 57 year old female living on a smallholding in the Welsh hills. I have historically suffered on/off back pain that tended to travel between my lumber and thoracic regions, the last three years being more on than off.
I finally have a diagnosis, of quite frankly, a condition/disease that I had never heard of.
I have gone through a number of mood swings in the last 3 days, from feeling relieved, then angry and now low again. In the main due to reading about the symptoms and it being patently obvious that I fit every descriptor, that I had repeatedly queried the Menopause diagnosis and there being no difference despite HRT!
Anyhow, it's time to move on, I have joined the group and will be having a good read of previous posts to understand more about Polymyalgia.
I would just like to say hello and thank everyone, for what I am sure will be, invaluable information and support.
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Hopeful66
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Welcome to the group! Your living situation sounds idyllic but I bet it means relentless hard work. I wish I had taken HRT now that we know it’s safe, you may feel the long term benefits once the PMR symptoms are under control with Prednisalone and that should be within days. Have a look at FAQs to gain a bit of knowledge ( accessed from this page). At least you have been diagnosed with a condition that goes into remission. Ask your questions as they arrive, this is a very supportive and knowledgeable forum, that will improve your experience and management of the disease. Keep hopeful, Hopeful66. 🍀
Your feelings about the diagnosis are a quite normal grief reaction. Eventually, most of us come to the acceptance stage and get on with taking the tablets and hoping one day that the PMR will go into remission. The fact that you are already "moving on" sounds great.
No doubt you will have to pace yourself on the smallholding. If you have already started on pred, it should give you relief from the previous 3 years of pain, but don't overdo it!
You are right, this forum is invaluable to all of us.
Thank you, we moved to the smallholding in the summer of 2015 - semi retirement, self sufficiency, ideal lifestyle etc..... This was fantastic for five years, growing our own fruit/veg, rearing poultry, (rare endangered/breeds for the most part), working as a part time self employed H&S Consultant - we loved it, it was everything we had 'knocked ourselves out for'. However three years ago my husband suffered a major stroke, I had to drop the consultancy work to care for him and take over 100% of the outdoor work too - still, we managed, Covid hit and we were happy in our 'hermit style' existence. I developed Sepsis in 2021, closely followed by Covid and that's when the real pain problems started - in hindsight now I realise that the pain I was experiencing preventing me from doing much at all in the early part of every day was actually PMR .......... upshot is that for the last year, to cope we have downsized our stock to a handful of breeding groups, my husband opens up in the mornings, we share the tasks of feeding birds & cleaning sheds - depending on who is most able by the afternoon! Our veg plots, greenhouses and polytunnel are mostly put to bed - to prevent weed ingress. On the upside I can see that my treatment should mean that I'll be able to better cope now and maybe next spring will have a better quality of life around our 'holding. I look forward to having a look at the FB page
We are just outside of Lampeter - up in the hills - remote and peaceful, the pace of life is slow compared to our previous life, (Essex & London). Funnily enough I noted that one of the Consultants from, what was our local hospital in Southend, (now Professor), DasGupta is very well versed in PMR diagnosis and treatment - I saw him some 20 years ago in Southend!
If you haven't already got it, buy the book by Kate Gilbert on Polymyalgia. I was diagnosed in April this year. The book and this forum have helped enormously.
Hi. I lived in Southend many years ago, used to work at the airport (Cabin Staff),. I don’t know why/how but I remember the name Dr DasGupta 🤔. I shall be puzzling that all day now!
Sounds like a huge amount of physical and mental stress. Sorry to hear that and about your PMR diagnosis. I was the same...depressed about having a weird disease (!) but relieved it was something that improves with treatment and will hopefully go away eventually. I have almost got used to it 15 months on from diagnosis. More rest, very slow reduction of Pred., taking the Vit D and calcium (I also take vit K and magnesium) are important. It took me a while to accept I couldn't just take the drugs and carry on as normal but I'm pretty much living how I did pre-symptons now (being mindful of signs of overdoing it!).
This site has been a lifeline....look after yourself and all the best to you.
Welcome Hopeful! The above replies have said it all but I will just add that I think you have been very sensible in downsizing as much as you can.
I am English born but live in Tasmania. I have a large vegie patch and keep chooks plus we run a very popular holiday cottage.
I have had PMR for 6 and a half years and I am now in the stage of "deathly fatigue" where I have dropped the steroids to too low a dose to supply my adrenal needs but my adrenal system (dormant because of artifically supplying cortisol via prednisone) has yet to wake up. This wonderful forum has coined the phrase "deathly fatigue" and believe me it is apt!
I have learned to cull just about everything from my life at this stage: if the vegies don't get planted then they don't, we simply buy what we need. I am surrounded by wonderful supportive family who will come to my rescue if need be and a great husband. We block off the holiday cottage to ensure a few days in between each guest so that takes some pressure and work off.
This forum has been a life saver! You may be one of the lucky ones whose PMR is over in a year or two but many are not so fortunate.
I have a brother who lives near Welshpool who also has PMR.
All the very best. Remember the words of the Desiderata about accepting the things you can't change.........
Welcome Hopeful66! I was diagnosed in May this year and can relate to your emotional highs and lows at the beginning. This forum is wonderful, with so many knowledgeable and supportive people, and so much information. It is very overwhelming at first, but the key mantra seems to be to accept your diagnosis (which you’re already doing) and to take things very steadily. Although this condition is very debilitating, if you take the pred and don’t overdo it it is manageable, and there are much worse things out there. Take care.
So sorry to hear that you had to wait so long for a diagnosis but glad for you that at least you can get the treatment you need. You will find this site so helpful - such a great go-to place - with all the comments of those with loads of experience and those who are at more or less the same stage as you. I hope that you will soon be feeling better.
Hello and welcome to the club we’d all prefer not to be in! I was diagnosed in April this year and luckily discovered this site fairly quickly and it has been invaluable. To be honest as soon as I was started on prednisolone I haven’t had much pain apart from the one time I tried to rush my tapering and had a minor flare. My main symptoms have been the tiredness and frustration at not being able to be as active as I used to be, also the steroids have increased my pre diabetes so I’ve had to drastically cut my carbohydrate intake. Good luck on your PMR journey
To be fair, I am a fellow sufferer. I was diagnosed with pmr and gcq just over 1 year ago, and it has been a journey for sure.
When I was first diagnosed a friend suggested I read the following 2 books, Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide 2nd edition by Kate Gilbert and also The Anti Inflamation Zone. Both worthy books that really make you understand the disease and what you can try to do to help yourself.
Then of course read the forum on a daily basis. you get to see that you are not alone, and what you experience, other are too.
My story is I have gone from 60mg of Prednisolone down to 7mg per day. Alas, I have just had a flare and gone back to 9mg, but hope to reduce soon.
In my own case, I am also learning the importance of being kind to yourself, and I have taken up yin yoga and also dancing. 2 total indulgences just for relaxation.
Good luck with your journey, let me know how you get on.
Seriously though one thing that hasn’t been mentioned on our initial welcoming advice is don’t be pushed into taking AA without a Dexa scan . Your HRT will have helped to protect your bones and AA is very often not necessary but is on the “ tick list “.
I too farm sheep in Welsh hills.....I too have this problem but I'm a bit Older! My problem is exacerbated by GCA so essential to have been prescribed Prednisolone. I am down to 4mg a day now.I wish you well...this illness makes practical work a challenge.
welcome to the group, everyone has been so helpful when I’ve posted queries, hopefully you’ll find the group supportive. I had never heard of PMR either before my diagnosis and still have days when I feel cross about it or down but mostly get on with day to day working full time, running after children (even the older ones!) and elderly parents, hopefully it won’t be as bad as you think from reading up about the condition x
Welcome to this fantastic forum. It really is a lifesaver. Every morning I have a word with myself and make a decision as to whether I will be having a good day or a bad day. Sounds slightly mad but I find it works because I’ve made the decision to have a good day no matter what. Good luck on your journey and it helps to know that you are not alone.
Hi, may I join all the others in saying I am sorry you have developed this illness.
My husband started with this totally out of the blue in 2009. We were baffled for 18 months and he refused to go to a doctor. Instead he paid a fortune to a chiropractor (hope that’s correct) as he kept saying it was just a bad back. They made it 100% worse.
He ended up crying in agony, bedridden and lost two stone. We thought that was it, until I got madder than mad and insisted he saw a dr. He saw a wonderful guy at hospital who immediately put him on high dose pred. I came in from work the next day and I was shocked as he stood up from his chair and walked up and down the room unaided. He went from strength to strength.
Take heart from this please. He is 74, goes to the gym every morning, cuts down trees when I nag, puts me to shame as I’m the sick one now. His dose has remained at 4 for years and the gp never even reviews him.
I know everyone is different but staying active and healthy seems to be the key.
Welcome to the group ...it was very scary when I suddenly woke up unable to move about two and a half years ago ......now I am back to a normal active life and hopefully in remission...stay strong and informed it will get better and we are always here x
Welcome to a fabulous forum. I have learned more about PMR and GCA from this group than my medical specialists. I tell all my doctors about this informative group. You are so fortunate to have found this supportive community early on in your diagnosis. Only the best to you.
Hello Hopeful 66! I was diagnosed with GCA & PMR last month, after over a decade of being told I had fibromyalgia. Like you, I experienced a mixture of relief and apprehension, plus a kind of grief. I love this group - so much sound advice and humour. It's just me and the dog at home, so I look forward to my emails - often at 4 in the morning as I sleep badly on steroids. I was brought up in Cardigan and am trying to regain some of my Welsh language (which, by the way, is wonderfully expressive to swear in.) Enjoy your beautiful surroundings, and I wish you well on your PMR journey.
Hi there Hopeful. I too knew nothing about PMR, not even what the acronym meant. This group has been my lifeline - literally. After 5 months of agony and being diagnosed with "old age", I finally was able to have bloodwork done for RA at the suggestion of my pharmacist. It had been PMR all along. Diagnosed Jan. 2022. After a couple of days on 20 mg. of Prednisone (I'm in Nova Scotia, Canada), my life returned, albeit ever changed. In spite of the fact that you feel like Super Woman after just a few days, do not overdo anything. That's the Prednisone kicking in. Mine has been a roller coaster ride since Jan. 2022. I've learned more from this forum than any doctor. Ask questions. Can't stress enough how knowledgeable and kind fellow members are. With this PMR acceptance is key. It's a disease with a mind of its own. Rest is not a dirty word, but a necessity. What you can do, do it. Even if it's small steps. A positive intention set daily goes a long way.
I was thought to have polymyalgia a few years ago but they finally realised that it was the statins that I was on stopped me taking statins and I was fine although I do have other issues but at least a lot of my pain improved in my legs and arms so if you take statins it may possibly be that god bless
I can’t praise this forum enough, I have had so much helpful information from them. I’m one of the lucky ones as far as PMR is concerned as diagnosed in Dec 22 and just going down to 1mg of Prednisolone. Unfortunately also acquired Hyperparathyroidism and waiting for surgery, so pain is a continues nuisance, Do wish you lots of luck in the process of recovery, it will happen
Hi there - I hear ya! I am 58 now and it does goes eventually - I was started 20 months ago on 15mg and am now between 1.5 and 2 a day. Also have arthritis in hips and disc damage in lower back and sciatica pretty much constantly so those other things we suffer from often overtake the other aches and pains, I HATE steroids, my hair is thin and my skin I have lost the weight I put on and I wish they sorted out all the other aches and pains,
I know its crap but there are worse things to have like lupus fibromyalgia etc that do not go away and hopefully it won't stay around long. You are a busy person and too busy to be like this but the steroids really do help and it will get better.
I also put the HRT on my bum when I remember - good luck and by the way I am a spinner and weaver and work with wool 7 days a week I bet you have sheep! Good luck xx
Welcome to this great forum Hopeful66. When I got my first prescription for Prednisolone I wish that the GP had told me to watch my carbs! Not everyone puts on weight, but a lot do, and I certainly did. I've been taking pred for 2 years, and it's only relatively recently that it dawned on me that I was wasting my time trying to lose weight by just reducing calories. Lower carbs are key, and of course low carb also reduces the possibility of steroid induced diabetes. Once the penny had dropped I started to lose weight, without actually doing anything too drastic. Good luck, I hope that your PMR journey is short.
As you can see from the multitude of kind, supportive and informative replies to your post, this forum of folks “get it” more than most given our shared lived experience with PMR/GCA.
What you’ve described regarding your emotions make sense given you are experiencing the grief of your old life while trying to adapt to your new one. Many of us have felt denial, anger, sadness as we worked toward acceptance. I was so relieved to have a diagnosis and treatment after 6 months of increasingly painful mysterious symptoms at age 55, only 18 days after early retirement. This was NOT what I had planned as a new wife in my soon to be renovated home. Alas, acceptance took some time.
In the last 5+ years I have learned the importance of making adjustments along the way as need be. I’ve learned to listen to my body and advocate for my health. My focus has turned to what I can control (activity, rest, diet, whom I get support from), rather than what I can’t control (knowing exactly what caused PMR, how active it will be, when/if it goes into remission).
You have already made some lifestyle changes (downsizing), and are self aware (in tune with your emotions), and found us (which is valuable, especially in the early months of diagnosis). You are not alone. Please feel free to ask us anything, or simply vent or reflect. Take good care.
Welcome Hopeful66 to the club that no one wants to be in!
I'm 58 and newly diagnosed too (20th Oct) like you range of emotions, my overriding one being thankful its not going to kill me! My symptoms were so severe and rapid I seriously thought I had some awful degenerative disease that was going to finish me off. I'd never heard of it either and it was only because of 2 very good friends, one a nurse, the other a Physio who told me I had PMR before the Drs diganosis. I was put on 15mg initially for a month and already I'm tapering, I'm currently on 12.5mg and in one month I'll be on 10mg (all being well) and then I'll slow right down, my pain has almost gone, just my shoulders/ triceps remain but nowhere near the pain level and I'm feeling good. I've switched my diet to anti-inflammatory and organic .... I'm treating it like a challenge. My Dr is brilliant and we have agreed my treatment plan which I'm happy with.
If you want any advice this is the right place to be, I was overwhelmed with the wonderful support here, you're certainly not alone.
Your story sounds just like mine, and I was diagnosed 2 years ago aged 57. I'm sure you'll find this group really helpful and hopefully you'll get it under control and learn how best to manage it.
By extraordinary coincidence I was also living very close to Lampeter when I was finally diagnosed with PMR in January 17, having been treated for about 9 months for pain and increased stiffness with larger and larger amounts of powerful pain relief and opiates. When my doctor finally tested for inflammation markers I googled the symptoms and self diagnosed at the same moment as the doctor.Like you we were living the good life in Wales and I rode and drove a pony. I do honestly believe that the physical demands of that lifestyle kept me well then (once the pred had done its thing) and for the past seven years of tapering. I left that life to care for my mother in kent but kept the pony and have managed the PMR to make that possible. Only now, trying to deal with adrenal recovery, have I had to give up my pony and my outdoor life.
I hope you will soon be feeling so much better and that you and your husband will continue to enjoy what you have created in Wales, just take it steady.
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