Newly diagnosed "younger" age !! 47 years old and confused

Newly diagnosed "younger" age !! 47 years old and confused

Hello everyone.

I woke up one day in January 2013 in quite a physical state.

I was 46 and very fit and active. I work full time in the NHS and I was walking on average 5 miles a day with my dogs.

Bang! Wall hit!

Anyway my GP at the time refused to refer me anywhere, so I changed practice and my new GP sent me to rheumatology. Within a few months I'd had every blood test known to mankind ( all of them negative, including RF, ESR, CRP, antibodies), so I was given a leaflet and told I had fibromyalgia. Things deteriorated and in the last couple of weeks, on a hunch, my GP has started me in 15mg prednisolone and the change is nothing short of miraculous. I managed a five mile hike today without a walking stick. I can't tell you how good I feel. My GP is writing back to the rheum with a working diagnosis of PMR. What I wondered is whether there is a group of younger people in the forum? I certainly felt 110 years old for the past year, but now I feel like a baby!!!

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34 Replies

  • Don't know about here but there are a few younger people with PMR over on the forum associated with the PMR GCA UK northeast support group - plus several of us who are by your standards "older" first had the symptoms of PMR in our early 50s and had similar experiences "You're too young!" and "Your bloods are normal...".

    I personally am interested in your story because I am a patient rep involved in ongoing research planning - and I have been jumping up and down for a few years about the misconceptions about PMR in the context of age.

    By the way - a warning: yes you feel wonderful. But be careful not to overdo it! PMR is a nasty piece of stuff and will turn round and bite! You have not been "cured", the pred allows you to manage the symptoms - but you have to do your bit too and manage your lifestyle.

  • Please could you tell me what your symptoms are ?

  • Hello there! Thanks for the contact. I'm quite often on Facebook so I will go and check that out too.

    Never thought I'd be considered in a "younger" group of anything ever again, haha. Certainly I'd be happy if my experience helps or if I can contribute in any way with your research. And, I take your point about not overdoing things. If anything I have learned in the past 12 months about priorities. Thanks again, and hope to catch up with you soon either here, or on FB. Joy :)

  • Hi Bowler,

    Symptoms have been unrelenting pain and stiffness of upper arms, and arthritic pain in wrists and hands. Pain and stiffness of back, hips and pelvis, and latterly of both feet.

    Worse on rest, remits on exercise to an extent but not fully. Sometimes have been unable to walk without a walking stick. All of this for 12 months. Absolutely nothing on blood results. Joy

  • Hi Fluffyjoy, I have a similar story to yourself. I woke up with the muscle pains in neck, shoulders and hips Oct 2011. Initially sent for lots of physio, one GP mentioned Polymyalgia a few months in but bloods were all normal. So he was reluctant to try steroids, referred me to Rheumy who I first seen in June 2012, and who dismissed PMR because of my age - I was 46. 6 months later after many blood tests and scans she diagnosed me in Dec 2012. After 14 months of pain, like yourself it was miraculous. I also work in the NHS as a nurse, and have managed on the whole to continue. Since March 2013 I have suffered many of the GCA symptoms: burning temples, jaw cramping, tongue spasms and pain, along with tender scalp. I am now on a different battle as temple biopsy taken 10 months after starting Pred was negative, MRI does not reveal much and bloods remain normal. Having trouble getting Rheumys to take symptoms seriously, all because I'm "too young"

    Hope your Rheumy accepts PMR diagnosis and starts you on a realistic tapering regime. Do not reduce too fast or it will come back to bite you. The steroids are just dampening down the symptoms and not curing it, so days when you over do it, will be paid for the next day. Take care, and hopefully you will have a straight forward recovery. Best Wishes, Runrig x

  • Hi Runrig, thank you for the contact. I am sorry to hear of your complications and hope that it won't be too long until you get some resolution and relief. This forum is proving very useful, and strangely, reassuring (bit odd isn't it, but at least I know I'm not unique). Promise I won't overdo it too much - though I have tried to make up for a year of immobility in one day today ;) take care x

  • Hi Joy, I do hope you don't get the same skepticism from your Rheumy as I did. I was diagnosed Atypical PMR because of my age. I do think that those of us on the younger end of the spectrum compensate better than the older person whom the average age is 70. I feel this may be a factor in why bloods are normal in younger patients. Good luck, regards Runrig x

  • Hi Fluffyjoy, first of all i am glad yoyr feeling better, i had same at 56 years old, the steriods made me feel great after a day, thing is be carefull, i was on big doses up and down up to 60 mil for 2 yearss and i had pain in groin which no one could sort out until they found out the steroids had eatan away at my hips, after 3 ops and 2 years on sticks i am now just without sticks and down to 5 mill of steroids, i had a year on methotrexate which helped me a lot and mo side effects and take the tablets for calcium as they help, hope you keep well and soon get down on steroids

  • Hi Fluffyjoy, I started to have nasty muscular pain in thighs and hips/lower back in March 2012,aged 52.I did have raised levels of Esr and CRP but GP thought it was inconclusive. Finally saw Rheumy in August who did a whole raft of tests and mentioned PMR as a possibility, giving me a steroid shot that would last a month as a trial. When I went back he wasn't interested in the relief I had felt but decided that I was "cured". I really wanted to believe him!

    When the month was up a few days later the pains all returned and worse, so I went back to see him. He didn't do any tests, just told me that all that was wrong was my posture and I needed physio. I virtually begged for a steroid shot to give me enough pain relief just to get to a physio. He reluctantly agreed and said if I ever came back he would not give me any other pain relief again! I went dutifully to physio, but after 3 treatments the physio was sure that my pain was inflammatory as it was not responding to treatment and he advised a second opinion. So on to the next Rheumy who agreed I was in a lot of pain and needed relief from it. After many more tests he put me on 15 mgs.pred. in Nov. 2012,and within 3 days I was totally pain free which seemed unbelievable! Since then it has been a very up and down story, but, basically despite the inflammation showing in my blood and the pain relief from pred, this Rheumy never gave me a conclusive diagnosis and gave me contradictory and wishy-washy advice. He seemed to want to give me a drug for every symptom, rather than looking at the speed with which he wanted me to taper the Pred. So, in the last year I have had 3 flares which have been very unpleasent, but were never acknowledged as flares by the rheumy. So, on to my third Rheumy because I felt I needed a definitive diagnosis. I went to the expert- Professor Dasgupta in Southend and he promptly told me I was too young to have PMR and that I did, however have secondary Fibromyalgia . Luckily, he did order up a raft of tests that had bot been done before, among them a PET scan and that actually showed that my vessels were inflamed in the areas that suggested PMR. This means that, finally I have a proper diagnosis and am being treated for the right thing. I am currently on 8 mgs of Pred- I have always found it very hard to reduce, and ESR and CRP always goes up when I do, so I am also on Leflunomide to see if it can help me to get lower on the Pred.

    I know this is a long answer, but when I first started on this difficult journey, I found it really helpful to hear other people's stories.

    I hope that your journey is straightforward and short!!

  • Suzy - do you mind if I take a copy of your post? I am involved in a working group and this is the sort of info I would like to show the experts about how we are repeatedly told we are too young/have normal bloods blah blah.

  • Yes, I am very happy to help in any way that I can to update the professionals' understanding of this condition.

  • Hi . I'm 55 and jan 2013 I was diagnosed with polymyalgia, I had lost a lot of weight an the pain was terrible , I couldn't stand from a sitting position without being in pain, I had loads of tests and then when I went to see my doctor and she saw how I couldn't get up she sent me for a blood test and I was put on 20 mg prendisolone, the pain had gone next day, I got down to 4 mg but I started with pain in jaw and lost sight in right eye for a while , went to hospital and they confirmed I have giant cell artiritis I also had a mini stroke that was in October 2013, I was put on 60mg of prendisolone I've now gone down to 40mg. I must point out that for me to get gca was unlucky and very few people with polymyalgia get it. I wish you well.

  • "I must point out that for me to get gca was unlucky and very few people with polymyalgia get it." - I'm afraid that is not entirely true. Approximately one in six of patients with PMR go on to develop GCA which is a much higher rate than the general population, even if that is restricted to over 50 year olds. PMR is also one of the symptoms for GCA and anyone with PMR should be very careful of any symptoms that may indicate GCA.

  • I am aware that people with polymyalgia will know the symptoms of gca, I didn't want to worry people and I was told by the medical profession that it is rare. When I was told I had gca it was my biggest fear as I had read up on it before I got it and it was on my mind constantly. Every time I go under 35mg prendisolone my gca start up again , the side effects of the steroids are bad and if it wasn't for the fact I could loose my sight I would not be on steroids.

  • Unfortunately Jane, far too many doctors don't know enough about PMR or GCA to tell their PMR patients to be aware of the symptoms. GCA itself is rare - though we suspect not quite as rare as the official figures suggest.

    I am so sorry you have problems reducing below 35mg because that dose of pred is not pleasant I know. It has been noticed that some patients who reduce in the usual 5mg steps have problems - have you tried smaller steps? Two ladies on another forum had problems getting below about 35mg but when they did the drops in 2.5mg down to 30 and then 1mg at a time after that they did well without being put onto "steroid sparers". Good luck.

  • Thank you , I am so depressed as I have been on high dose of prendisolone since October, they have taken some blood tests to see if I can go on a tablet that will help me come down faster on my steroids but I haven't heard any thing yet. I have gone up 5 dress sizes and it's so uncomfortable , I have moon face, buffalow hump, glaucoma, but the worse is the breathlessness when I do anything, I seem to feel sorry for myself which I hate to do but even though I have a great husband, children and friend I still feel so alone with it, sorry for moaning but I'm having a bit of a weepy day.

  • I think you are allowed a moan and a tear - I had the buffalo hump and no clothes and a daughter's wedding at a point where I couldn't get to a shop never mind find something that fitted! I was tempted to take up her offer of "come in jeans". It would have saved a fortune and a lot of heartache! I've never had eye problems or breathlessness but I've also never been above 20mg. I was really ill nearly 2 years ago and spent 3 weeks in hospital - coming home with another diagnosis on top and a suitcase full of drugs. I was at the GP or the hospital every week and felt awful. I couldn't walk without crutches either. My lovely GP promised me it would pass - it did, it does, but not in a week or two.

    The only place you won't feel alone is at the forums - where do you live? There may be a real live support group near enough to get to. Only those who have walked in the same shoes really get it - the rest can't and also don't understand why the pills don't make you feel great. I broke it to a research consultant rheumy a few weeks ago that, no, we DON'T feel fine again as soon as we take pred. I wish!

  • I live in lancashire, I'm going to my first meeting in June to the charity event, there is one in march but I'm unable to go to that one.Im at the hospital often, I seeing the eye specialist next week and the rheumatologist week after, I have my blood done every 2 week. The cramp in my hands is bad and I have a terrible taste in my mouth all the time. 3months on such a high dose of steroids is taking it out on me. I do hope you are soon feeling better, talking to you has made me feel better, thank you.

  • Hi Jane, I was diagnosed with GCA last December and instantly put on 40 Pred with very severe side effects. The severity is due to having had severe M.E. for the last 20 years. The hyper effect overcame some of the chronic M.E. fatigue but now I am down to 20, thats gone and the mental effects are truly dreadful as well as digestion problems and dizziness. What I would like to know is once one is down to say 5 do those side effects stop ? Or are they always there to some extent ? I have noticed that each day for an hour or two before taking the preds again my mind clears and the headaches gone.

  • Hi merlinscot1. I was put on 60mg of pred in October , I'm only done to 40mg now as I had to go up when I came down to 35, I hope to come down 5mg every 2 weeks depending on my blood. Before that I got polymyalgia jan 2013 and started on 20mg got down to 4mg then got my gca. I didn't have many side effects on 20 , I couldn't sleep and I put a bit of weight on , but since I've been on the higher dose the side effects have hit me like a steam train as I have wrote in previous notes. I sometimes get the headaches, I think when we come down off the steroids the side effects will go I think while we are on them we will always have some, I hope you continue to come down on your steroids as I know they do the job but I hate the side effects, we can just take one day at a time, look after yourself and I hope you are soon off the steroids.

  • Hi Fluffyjoy, (Poly at 45).... I kept active all my life too, ate healthy, haven't smoked, glass of wine occasionally and where as it got me, Poly at 45 & Crohn's disease. There are plenty people worse of than me so I am so so grateful for the health I do have. Poly at 45 was a shock, but like you started the steriods (20mg) and it was a miracle after two hours I could finally walk after 6 months on crutches. Now down to 5mg, predisolone kills two birds with one stone, Poly & Crohns. 45 is very young for Poly, but I think they need to re think the minimum age for it as I reckon there are quite a few out there now living with it below the age of 50. Love the photo, keep walking and keep positive and you will eventually get there I'm sure x Angie

  • Hi -- I was diagnosed at about 51. My GP immediately referred me to a rheumatologist after doing a huge range of blood and other tests (I thought I had RSI from computer use but she recognised something more was going on). I researched online and despite the anomaly of age, PMR was the only thing that exactly fit what I was going through. My GP had not considered it a likely option because of my age, I found out later. I do wonder at times how many younger cases are misdiagnosed as fibromyalgia.

    I will give one word of caution: on the initial dose of prednisone you will feel you can do your old exercise routine but this will almost definitely change as you start to drop in dosage. I too was very fit (a fitness swimmer who often walked long distance with my dogs too, and a daily cyclist about town) but soon had to be very careful though keeping up moderate exercise is very important and does help the pain. I found swimming worked far and away better than every other type of exercise. You do need to be careful, as too much exercise may create more pain that can take days to settle down.

    Most of us find we do need to manage a balance between getting exercise in and not overdoing it to a point that creates more problems. I was able to go on long walks but could be very very slow.

    I remember when I was told I'd be on preds for two years or so, I was filled with disbelief. I also remember how fast the pain went within a few hours on my first 15mg dose, and how I was totally wired and marched off on a long walk -- but that's typical prednisone at higher doses!! :) Once I did my first drop, that 'back to normal' passed.

    Three years on, I do have osteoarthritis (hip) but was taken off preds last April after two years on it. What I find strange is how stiff other parts of me feel -- because although i had far more pain with the PMR-related pain, the preds given for the PMR wiped out the low level osteoarthritic pain and my RSI. Now that the PMR pain is gone and I'm off preds, I have the return of the other pain back. :) The frustrations of getting older!!! But it is nothing like the PMR, when I struggled to get up and down stairs or get onto a bicycle.

    Be careful in managing the exercise and be ready for that ability level to decline. The hardest part of this condition I think is the initial mental adjustment. Part of that will be accepting you cannot do what you have been doing and need to be gentle with your body, which will tire more quickly and struggle at times to recover from pushing too hard. It can feel like a betrayal but just as your body supported and enabled you to do so many things up to now, this is a point where the mind now has to support the body -- to recognise the body needs help and kindness and be allowed to gradually recover. Pushing too hard can definitely set back recovery rather than support it. Recovery takes time.

    Just one aside: PMR doesn't generally tend to affect hand, wrists and feet -- pain in these places is often used to make a diagnosis of rheumatoid arthritis. So perhaps there is something else going on? I assume your rheumatologist will have considered this though.

  • Hi all, I'm 56, I was diagnosed at the beginning of January with PMR, and like a lot of you up l had been very fit, running 5k three times a week, walking and swimming regularly with very good muscle tone until I started with sciatica back in September 2013 and was diagnosed with spinal stenosis in November after having an MRI scan as I'd kept returning to complain of the pain being so severe and being unable to walk upstairs properly. I had gone in to see a GP to discuss my dose of drugs, as soon as I sat down he could see I was no better in fact much worse. I told him the pain in my arms, neck, bottom and thighs were so bad I couldn't cope with everyday things anymore. I explained the loss of strength in my upper body, he immediately sent me for blood tests, that was on the 23rd December, on the 27th I was re-called to the surgery to discuss my results. I saw another GP and he asked if I'd heard of polymyalgia rhuematica, I said I had as my mother in law has it, she was diagnosed with it at aged 74, she's now off the steroids and is 77. He said he suspected that I had it but needed further blood tests to rule out bone cancer and rheumatoid arithitis and only when they had been ruled out could I start on the prednisone. So on the 7th January I started on 15mg by the end of the week I was feeling 70% better and four weeks after felt as I did before! My bloods had come back and the doctor just said wow the inflammation was almost gone. Then I started cleaning as if I was cured and back to normal but after three days of heavy cleaning, I've got my sciatica back! not the PMR symptoms thankfully. It has taught me a lesson though I need to pace myself. I have one more week on the 15mg then I'm cutting back to 12.5. Thanks to this website I have realised how common PMR is and that it's not only confined to the over 70s.

  • I'm guessing we are all learning from hard experience to take it easier! Stay well x

  • Hi Fluffyjoy

    I was 51 when diagnosed last October. Luckily my GP was convinced something was wrong (other than longstanding calcific tendonitis) even though my blood tests were fine and a rheumatologist dismissed the Doctors suspicions of PMR because I was too young! When I mentioned jaw pain / tender scalp / blurry vision he immediatley started me on 40mg of pred a day and made an urgent referral to another Rheumy who also looked at the symptoms, not my age, and diagnosed PMR and GCA. THIS FORUM IS GREAT and I have learnt so much from the fellow sufferers on here. I too felt fantastic within days of starting the pred but after 12 months of pain and fatigue am finding it difficult to follow the advice to not overdo it! Getting the balance right between exercise and rest seems to be trial and error and what works for one person is no good for another. Hope you carry on feeling good

  • hello to all of you on here. i have just read your posts and would just like to wish you all well and hope you all feel a bit better soon. i do have pmr and im sure we can all relate to each other. this is just a hopefully cheer up message to all of us sufferers xx

  • Hi everyone.

    Wow, thank you all for the input and sharing your experiences and tips.

    Well, I have crashed. As you experienced peeps knew I would.

    I reduced to 12.5mg on GP advice and I feel worse than ever. Wonder how a seemingly shall dose reduction can have such a dramatic impact.

    However, the advice is to go back up to 15mg for a couple of days and then see.

    I hope to see the rheum again soon, as my hands are puffing up and looking suspiciously like there could be inter phalangeal problems. Oh dear. Keep you posted! Lots of love to you all xxx

  • Hi Fluffyjoy - I don't know if I qualify as "young" but last January 2013 when I was 52 I was waiting for my 5th knee op (18th March) brought about by sporting activities over the years. I'm a Fire Officer (ex-PE Teacher) and have run 22 marathons around the world, ran well over 100 1/2 marathons, climbed some of the world's highest mountains and completed lots of weird and wonderful challenges. After my knee op I went downhill very fast, lost over 2st and was diagnosed with PMR in May and put on 25mg Pred. I'm now on 4.5mg and have returned to work, manage to swim up to 100 lengths, run only 30mins at a time and also complete the Saturday national 5km Parkruns. My 'Fire & Ice' team have raised over £93,000 for charities and last September my son raised over £2,000 for PMR-GCA NE Support at the Great North Run. I've got my place for this year's GNR in September and that's my target. Take care x

  • My Facebook is John Robson (and live in Durham) plus try Fire and Ice Expeditions on Facebook. Chat soon

  • At my worst I was confined to bed, couldn't raise my arms at all or switch on a light. I was in a wheelchair last April-June and the pains were worse than climbing a mountain at high altitude in white out blizzard conditions not knowing whether you were about to go down a cornice or crevasse! I had so many good friends (Mountaineers, climbers, runners, colleagues etc) plus my inner strength and positive attitude to work with this thing (PMR) and one day will return to the Himalayas, the Andes, the Caucasus mountains. I dream of the Snow Leopards in the old Russian Federation - now that would be something :-)

  • Wow John, you've come on in leaps and bounds and your attitude is amazing. I don't doubt that you will be seeing those Snow Leopards very soon! :)

  • Hi to everyone first of all,I got PMR when I was 48. The hardest part for me is that people at work think I'm lazy when I have bad days. They don't understand because PMR is not that well known.

  • I found being very open, talking to as many people as possible, spreading the word and using social network such as Twitter and Facebook. As a young-ish 51 yr old man who regularly ran marathons and climbed mountains I had to research PMR, joined the PMR-GCA NE Support Group, spread the 'gospel' with a wide range of friends, family and work colleagues. Kate has written about me in her book (a must for any Kindle) and I intend to purchase several paperback copies when produced and give to friends, family and colleagues. This will advance the awareness and understanding of PMR - especially as I have returned to work as a Fire Officer and running again (4.5mg at present). People will understand - help to open their eyes :-0

  • Hi all,

    Well I am down to 11mg now. Had a week of flare up whilst I adjusted to the drop from 12.5mg, but finally got up feeling good today. I guess that will be the way it goes with each decrease? From tomorrow I should be on 10mg for a week and so on, until it no longer works. In the meantime, my rheum does not seem to be in any particular rush to see me again. My friends and colleagues say I haven't looked so well as I do now in a couple of years. Staying positive! Jonny, I looked for you on Facebook, but could not determine which was you. :)

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