Hello everyone. I'm new to this forum and this is my first post. My name is Ally and I am 49. I visited my GP a few months ago, as for the last 18 months or so I have been having unexplained aches, pains and stiffness in my hips, neck, shoulders and base of back (just above buttocks). The pain is more noticeable if I have been inactive for any amount of time. Turning over in bed at night, or getting out of a chair is challenging to say the least, as is putting on my socks in the morning. I walk like a crab going down the stairs first thing, as I am so stiff. I am usually fit and active, a frequent runner and cyclist, but can't do either just now. I feel like a 49 year old in a 89 year old body! Currently, I only work 2 days a week, come home and collapse in a heap, but being a mum to a 5 year old makes resting virtually impossible. My daughter and I both have the same 8pm bedtime, as I physically can't function any later than this. I'm not sure what is more frustrating, the 'hit by a train' exhaustion, or the stiffness and aches. I feel I am merely existing at the moment, instead of living my life to the full. The first GP I saw suggested that it might be PMR, which I had never heard of before. However when I went to get my results and saw a second GP, (as the first one had started mat leave), she said that there were no inflammation markers in my bloods and there was no way it could be PMR as I was far too young. She suggested fibromyalgia, but I really don't think it is this, as I don't have pain all over my body or other fibro type symptoms. I have an appointment with a rheumatologist in December and am concerned that, because I am not 'in the right age bracket' for PMR, I will be misdiagnosed with fibromyalgia. I would be very grateful on any advice on how to approach my visit to the rheumatologist. Apologies for the long and 'sorry for myself' post, I am usually quite upbeat, honest....
Thanks in advance for any advice.
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Hi Ally and welcome to this site, you will find it very supportive and full of real expertise and advice. It has transformed my experience of this autoimmune disease.
The symptoms you present with certainly sound typical of PMR and your age although unusually young, does not discount it completely.
Have you been tried on Prednisalone/ Prednisone?
For a lot of us, a very quick, positive response to 15 - 20 mgs a day of Pred was the deciding factor in our diagnosis. I have learned here that it is perfectly possible to have the disease without your inflammatory markers being raised, I think about 20% of patients fall into this category.
In the absence of any alternative diagnosis I would want my doctors to try Pred to see if I responded, dramatically and positively, in some cases it can be within hours of the first dose. The stiffness and pain is often completely relieved and it feels miraculous.
Your post is not unusually long or disproportionately sorry for yourself at all. Please stick with us so that we can support you. There is always someone who shares your experience and can advise you, however small or insignificant you might think your concern is.
The first thing for you is to get a firm diagnosis and start treatment. For this it is helpful to have a Rheumatologist who can think outside of the box and has a particular interest in this relatively rare disease.
Where are you? We may be able to recommend someone.
Thanks SheffieldJane for your kind reply. I have not started any medication yet as my GP has almost certainly ruled out PMR. I am hoping my visit to the Rheumy will shed some light on my symptoms. I live in Northumberland.
👋Please can someone send a link to Ally for the North East PMR website and the support group details? I'm not sure how to put a link on here using the iPad..
There seems to be a lot of expertise in your neck of the woods Ally.
Hallo Ally, welcome to the forum, we’d rather that you didn’t have to be here, but since you are struggling with what sounds very like PMR, it’s a good place to be. Lots of advice here.
From all that I’ve read, 49 is young for PMR, but not unheard of. PMR doesn’t read medical books, so doesn’t know it should wait for your 50th birthday to strike 😉
I was diagnosed age 56 (but suspect PMR has been hanging around since 55). I felt rather miffed that I had something that usually happens in one’s 70’s....but that is not truly accurate either! Lots of us here in our 50’s!
I also am one with perfectly normal ESR and CRP. For this reason my GP didn’t believe I had it either, but I was able to persuade him to try me on pred, and literally 3 hours after first dose things were easing, and by next morning I was like a spring chicken, bounced out of bed and walked the dog for 2 miles in record time!
Youve been referred to a rheumie which is good as you are atypical (low inflammatory markers and age). I dreaded seeing my rheumie, but she turned out to be very nice, and just stated that ‘normal blood levels happen sometimes’.
I don’t envy you having to bounce around after a 5 year old, or having to work. My kids are now in their 20’s and I’d given up work when I was 55 to care for mother in law with Alzheimer’s and PMR! But I do think that my work was implicit in me becoming unwell, as had extremely high chronic stress in social services. There’s nothing else for it, you have to learn how to eek out your limited energy, and rest, rest, rest whenever you can.
Good luck with your rheumie appointment. Stick with us now that you’ve found us. There’s tons of factual, sensible, pragmatic advice here. Your journey will likely be bumpy, but the clever souls here will smooth you path.
Oh and re fibromyalgia: that won’t respond to pred, whereas PMR does, just like magic. So if that diagnosis is dangled, insist on a week of pred to rule fibro in/out.
Hi Ally and welcome to the club that none of us really wanted to join. I was in the right age group when I started with pmr but everything else was not. Pain and stiffness in my neck and shoulders pain but no stiffness in my hips blood markers were normal. Given pred for a week and within hours was running around like the Duracell bunny 🐰 Don't let them fob you off without trying prednisone for a week. It doesn't help fibromyalgia at all.
Try PMRGCAuk there is a telephone help line number if you want to talk to someone who has or has had this b€**$¥y disease.
Might help to get your point across when you see the Rheumy to have a list of your symptoms and how long they last etc.
Please don't apologise for being ill this pesky disease chose you not the other way round.
Oh another thought to help you while you wait for your appointment: warmth can help PMR pain. Long hot showers or baths (don’t get stuck!) or hot water bottles or microwave heat pads have a vasodilatory effect and help the blood flow a little better. As does my favourite a ‘small’ glass of red wine 😉
You seem to suggest activity improves the pain? And when at night is it painful? Early in the night, say 2am, or more like 5am? Please tell me - it isn't immaterial.
You can't see the first GP again - but is there another choice in the practice who MIGHT allow you a week or two on pred to see if it makes a difference - if it does, it is NOT fibro. It isn't inflammatory.
The second one is making assumptions but there are people your age who have been diagnosed with PMR: contrary to some doctor's beliefs it doesn't read the text books and all too often they don't see it is PMR because they aren't looking for it in younger patients. Up to 20% of patients don't have raised inflammatory markers - and that is more common in the younger patients. I have normal markers, I was 51 when I first noticed the signs but I suspect it had been hanging around for a while. Funny - the practice I went to in Durham had a woman who recognised PMR but SHE was always on maty leave so I never saw her!
You have the link for the NE charity which is based in Gateshead - do call them and ask for advice about good rheumies and is yours one!
And in the meantime - try an electric blanket to warm you up BEFORE getting out of bed and then have a nice gentle stretch in the shower. Keeping warm does help - especially in the frozen wastes of Northumberland. I've never lived anywhere as cold as Durham - I moved from 150 miles further north! I used to sit against the radiator in the conservatory - the only one I could put a foot stool against, I couldnt get up from the floor I used to be in bed at 8.30 given half a chance - and I didn't have a 5 year old.
Thanks PMRpro for your reply and advice. I would say the discomfort at night would generally occur after 2 or 3am, but not as late as 6am. I tend to sleep soundly until then. I will then wake up and try to roll over to get more comfortable, but my hips and shoulder blades (and sometimes lower back muscles above buttocks, don't know what they're called) have 'seized up'. It usually takes some effort to switch sides. Whilst I'm waiting for my appointment I will try the electric blanket, hot water bottles and warm showers approach in the meantime.
Pain that occurs earlier in the night is typical of ankylosing spondylitis - and it should be a rule out in patients presenting with PMR-type symptoms, especially younger ones. So it would be worth mentioning - providing your rheumy isn't the gentleman who told a patient on another forum that AS only occurs in males under 30. Which it doesn't.
Yepp, that was me-3-4 weeks into pmr. Very typical im afraid. And no blod markers. Still i had no doubt by then, i was becoming my own 78 year old mum, whos had pmr for 3-4 years now. So i insisted, after blood test for ra ofcourse.
Please keep an open mind because this might not be PMR and even if it is, you are an extremely unusual case and would need special attention from a rheumatologist. Before you embark on years of steroids, try and get some scans done. A PET scan around your shoulder area will reveal whether you have symptoms of large vessel vasculitis, for example. Another kind of scan might reveal the bursitis which is a feature of 'classic' PMR.
Thanks Kate. I really don't want to take any meds unless I absolutely have to. I was sort of hoping that the aches and stiffness might be linked to the menopause and disappear of their own accord. However, GP has ruled this out as I started HRT a few months ago and according to her, if my symptoms were menopausal they would have subsided once the HRT kicked in.
Hello Ally and welcome! You've comeback to the right place for support, info, understanding, advise, knowledge and expertise. If it helps: I was 54 when symptoms hit i Aug, and there are quite a few people here their fifties, and some your age. Way too young too move like you're a 100 or more and it sure takes some getting used to: the PMR diagnosis, I mean. But as soon as you're on Pred (start on 15 mg) for fire weeks, and your life will be back on track. Even we young people need to get started on the Pred asap, since GCA is luring in the shadows: we don't need that worry (at least reduce the chances og GCA that is). I've worked full time through the first 6 weeks when the PMR established itself with pain, stofness, fatigue- just like you describe, and then continued working, with more ease, these last 6,5 weeks on Pred. Taperen down to 12,5 mg after 5 weeks. First three dans fine, then some soreness, but not a problem at all. I expect it'll stbilize there for another 4-5 weeks before I taper again. I have teenage kids, single mum. You'll be fine with you're and parttime job. Just take life easy, leave hpusework to husband, spent your energi on kids, work, friends (a little bit on husband), and put lost of activities on hold, or just slowmotion - no workouts, but keep moving- no stress. Accept the disease, and work with it, not against it- with the help if Pred. Best wishes and good much from snowy Oslo (Norway)! ☃️
There are always exceptions to every rule. I was 53 when I was diagnosed but probably had it for a good two years before this. I can only reinforce what everyone else has already said. Good luck and I hope you get it sorted. Please keep us updated
Hi Ally, I was diagnosed with PMR this spring at age 47, at first my doctor also didn't think it could PMR because of my age. When I told her my mother also had PMR, she said it wasn't a hereditary disease. But I insisted and she checked my ESR levels, the were over 70, I then started with the prednisone and after a couple of hours I could move again. I hope you'll feel better soon, good luck!
Bad luck. But at least you seem to be getting progress and help from the great people on this site. I’m 73 and started PMR in October. Unfortunately my wife has had it for ages, so we knew what it was. ‘I told you it hurt’ ! Thanks 😉 😊😊
I was cycling 50+ miles a week and spent summer climbing in the alps, where I ski regularly. So PMR I didn’t need really, any more than you do. Started with 40mg per day in October and got immediate relief. Not total, but certainly bearable. Came down by 5mg per week to 20. Markers improved well. Then down by 2.5 a week and go to 10 on Saturday.
Steroids may have side effects. Read the blurb, but in my view the risk is worth it.
Am aware I may have been lucky to avoid a flare, but from 10 will start reducing by 10% max each week.
I’m gently getting back into cycling but restricting myself to the flat. (30 miles this week) Normally love cycling the Cotswold hills where we live, but they’ll have to wait a while.
Also gentle walks, but up to about 5 miles now. Hope this gives a ray of hope. 😊
I have tried to change diet, too. Look on internet for foods that are non inflammatory (greens, nuts, avocados). Stick turmeric in everything you can! Avoid processed foods and oils. Cold pressed olive oil is best. Lots of oily fish. Grilled salmon with salsa on green cabbage may sound odd but is great. Make sauces from whizzing cooked cauliflower florets and adding spices are tomato purée. The kids will say yuk, but it’s better than making white sauce with a roux mix
Hi! I'm sure others will respond with lots of more specific advice about the use of prednisone in diagnosis.
I was diagnosed with PMR when I was 52. My first Primary Care Physician did not prescribe me any prednisone as she didn't believe it was PMR due to my age. It got worse and worse to the point where I could walk only hunched over and with great difficulty. My second physician did prescribe me the prednisone and within hours I had great relief!!! One of the reasons she agreed to the prescription is that I told her my mother had also been diagnosed with PMR in her late 50s. And I had been through a 3 year period of great stress. A few months later when I was finally able to see a Rheumatologist she confirmed the diagnosis, corrected the dosage and told me slow way down in weaning off the prednisone. Anyway, try and give your physician any and all information that may help diagnose this condition including any family history that may not have ever been diagnosed ( if there is any of course.) Also, another potential trigger is if you recently had surgery.
Thank you Rosedail. It's good to hear other peoples experiences and I feel more confident going forward in what I need to discuss with the health professionals. I'm glad that your situation seems to be on the up now
Most of the people in this forum responded to Prednisone right away. It took my wife about 10 days before she felt even a slight improvement. So if you do start on pred and don't feel improvement immediately, it could take longer to take effect.
They will only respond in 48 hours if the dose tested is enough - and the most recent guidelines suggest a starting dose of the lowest effective dose in the range 12.5-25 for exactly that reason. If you give 15mg to a patient who needs 25mg - they are unlikely to respond well. Some experts suggest up to 72 hours and also suggest increasing the dose if good control is not achieved in a week:
"Nevertheless, controversy remains regarding dose and duration of treatment. Dose depends on the patient's weight and severity of symptoms. Expect prompt relief of symptoms within 24-72 hours. Corticosteroid dose should be increased if symptoms are not well controlled within 1 week, and a diagnosis of giant cell arteritis may need to be pursued, especially if prednisone 20 mg/d does not control symptoms. "
Think you might be surprised! It is being regarded as a world-wide problem and ticks are carrying it long before it is realised they are in a region. As Tonylynn says - not aware of a bite, no bulls-eye rash seen. But positive for Lyme.
It is far more common nowdays and I was diagnosed with PMR when it turned out to be Lyme. It is worth asking your GP for a blood test when you are next at surgery. I was unaware of having been bitten and no "bulls eye" rash and low ESR but gereralised muscle weakness.
Ally, sorry you are having a bad time. But hold out for your rheumatology appointment and don't go in with the mindset that you have PMR and expect confirmation. There are other things it can be -like other forms of vasculitis.
Thanks for your kind reply. I'm hoping that my rheumy appointment does prove fruitful, as I feel my life is sort of on hold at the mo, as I'm just too exhausted/stiff to get much done. I hope it's not 'all in my head' and I will start to feel alive again
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I used to be in bed at 8.30 given half a chance - and I didn't have a 5 year old.
and it sure takes some getting used to: the PMR diagnosis, I mean. But as soon as you're on Pred (start on 15 mg) for fire weeks, and your life will be back on track. Even we young people need to get started on the Pred asap, since GCA is luring in the shadows: we don't need that worry (at least reduce the chances og GCA that is). I've worked full time through the first 6 weeks when the PMR established itself with pain, stofness, fatigue- just like you describe, and then continued working, with more ease, these last 6,5 weeks on Pred. Taperen down to 12,5 mg after 5 weeks. First three dans fine, then some soreness, but not a problem at all. I expect it'll stbilize there for another 4-5 weeks before I taper again. I have teenage kids, single mum. You'll be fine with you're and parttime job. Just take life easy, leave hpusework to husband, spent your energi on kids, work, friends (a little bit on husband), and put lost of activities on hold, or just slowmotion - no workouts, but keep moving- no stress. Accept the disease, and work with it, not against it- with the help if Pred. Best wishes and good much from snowy Oslo (Norway)! ☃️
Any thoughts very welcome.
Dr.: You don´t have PMR and PMR is not a disease in the muscles?!
First Post on PMR/GCA
49 and diagnosed with PMR. Cannot take Pred.
