I have been suffering on and off for the last couple of years with mysterious joint/muscle pain flare ups with fatigue The pain has been unbearable and to the point that sometimes even getting out of bed or climbing the stairs has been so painful. My GP tsted my vitamin D levels and they were nearly non existent I was given supplements and my levels are now normal however Im still suffering. I seem to have constant pain in my left hip and thigh which affects my walking. I cannot even begin to describe the pain its so bad, painkillers do not seem to help. Then I get these flare ups , the last one lasting over 10 days. I am hobbling around unable to carry out everyday tasks and I am in extreme pain. I have had bloods done all were normal so my GP has referred me to Rhymatologist as she thinks I have PMR. I am a 48yr old female and feel very low as I used to be very active however now Im dragging myself out of bed due to fatigue, only able to do the minimal of daily tasks in pain before I need to sleep again. Im struggling at work having to take pain killers just to get through my shift and Im beginning to feel really low. Im confused by the information for PMR she has given me and the appointment was so rushed I never got to ask many questions. Does anyone know if this sounds like PMR and how serious is the condition? Is it life long or will it clear up eventually?
Thanks in advance.
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venus07
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It does sound suspiciously like PMR - except you are a bit on the young side (unusual but not unheard of) and your pains seem to be one sided whereas PMR is usually both sides.
Of course one side could be affected by MPS (myofascial pain syndrome) which is often associated with PMR.
Have a look at attached which hopefully should give you a bit more info about PMR. Then please come back and ask more questions if you have them. Hopefully your wait to see Rheumy won’t be too long, but in the meantime we’re here - take care
Thank you for your reply. I will look at the info which Im sure will be very helpful. I am seeing Rhymatologist on July 16th so not too long but long enough when Im in so much pain. The pain does spread throughout my whole body but only when I have a flare up. Thanks again.
Your GP could give you a trial of Pred for say a week or so to see if they work. So long as you’re not on them for 3 weeks you can stop them easily enough. Might be an idea to suggest that before you see Rheumy. If you get to see her that is!
Thats a great idea and maybe I would get some relief from the pain if they work. I will call the surgery in the morning. Thank you so much for your support, Ive been feeling very alone going through this although I think after this last flare up my family have realised how much pain I have been in and that there is something wrong with me.
PS The info you posted was fab. Im going to print it off so I can keep referring to it.
I love it! I may print it off and I can just point to how I am feeling rather than keep grumbling to my family as Im sure they are sick of me moaning lol.
Sounds like PMR which my mother has but also like fibromyalgia which I have. If the rheumatologist starts you on steroids and you improve then it’s PMR. Surprised the doc who suspects this hasn’t tried it. Fibromyalgia does not improve with steroids.
My mother has been struggling for two years now but you have age on your side so hopefully you may find recovery easier. Good luck
Hi Shelly. My GP was reluctant to start me on steroids as she isnt a 100% sure of it being PRM due to my age. Im sorry to hear your mum is struggling with this awful condition. I dont think that unless you have experienced it some people find it very hard to understand. As I understand Fibromyalgia is just as painful and debilatating. I am also sorry to hear that you are suffering from it. Fibromyalgia was my first thought. I will discuss it with the consultant. I have kept a diary of my daily symptoms to take to the appointment with me.
Thank you for your reply, its been a relief to discuss it tbh. I will keep you all updated.
Shelly23 - can I ask have you ever tried steroids for the fibro?? Just wondering if it was something you tried and they didn't work? Only asking this as I was told all my pain (for several years) before PMR was fibromyalgia - but when they put me on the steroids for the PMR all the other pain went - so was it not fibro I had !!?? OR do they in fact help with fibro pain! Would be interesting to see if you have ever been given steroids. Thanks.
I haven’t been given steroids for fibromyalgia - I take two different type of steroid for another condition so I guess things could get pretty messed up. Currently take Gabapentin plus paracetamol and codeine when I need it. Pain gets worse if I overdo things, sleep badly or get too stressed.
yes it would alright - thats what I find strange about them telling me I have fibro - which steroids arent't meant to work for - but they have made such a difference. Good luck with eveything.
I think it does venus07 as I read your post, I kept wanting to fast forward to the bit where you are prescribed 20 mgs of Prednisalone and the miracle occurs. Did that not happen?
This is a really good resource for asking all your questions, so welcome to the site and ask away.
Thank you SheffieldJane. Had I of know that this flare up would had lasted this long I would have requested the steriods. GP was reluctant to start me on them and tbh I panicked when I heard the word steriods as I do not feel I know enough about them and their side effects. But Im still in pain now and just want it to stop so if they work then I'm all for it.
If it is indeed PMR you will experience quite rapid relief of all that pain and stiffness. It is worth a trial run for that alone as a diagnostic tool. We all feel reluctant to take steroids but it is so much better than the pain and disability.
It could be PMR - but it could be a few other things as well which can also present in a very similar manner. Do the pain killers help at all? They usually don't in PMR.
This is a link to a resources post on another PMRGCA forum - it has links to lots of info and other sites with reliable articles about PMR. The NE of England support site has loads of newsletters as well as articles from patients and doctors.
Hi PMRpro thank you for your reply and info. Did you mean to post a link? Painkillers are not helping very much. I have been taking Co- codymol which the doctor has prescribed. These take the edge off it but do not take the pain away. If i sit down for a period of time it hurts whilst I am sitting and is painful when I mobilise. Even getting in and out of the car as well as using the clutch is painful. I cannot seem to control the pain its continuous.
Hi Venus07, I was diagnosed at age 51. My CRP (inflammatory marker) was elevated, but otherwise diagnosis was made on symptoms. Within 3 days of starting the prednisone I was 90% better! Yes, prednisone has lots of side effects, but many can be managed with diet, exercise and supplement support. Managing the side effects helped me feel somewhat in control of a disease I have little control over. Hope you find an answer soon.
I was 59 when it got me and like you I suffered for months before a new GP said try the steroids; if the pain and stiffness goes - it's prob pmr, if it doesn't - it isn't and you can stop them with no damage done. It went in 4 hours. I've had no side effects and am now down to 6mg after 8 months. I realise that I've had an easier ride than several people on this forum but it's got to be worth a try. Good luck!
Yes it does sound like PMR. I was seeing an orthopedic for my symptoms, ended up in er. Had blood work done. That's when my primary found it. It's a simple blood test done to done. ESR & CRP they determine the inflammation in your body.
Best of luck with your Consultant visit and let us know how it goes. Are your arms/shoulders affected at all? At a guess I'd say they will say Fibromyalgia! I do have this myself as well as PMR). I hope you get something sorted at least you will know what you are dealing with.
Hibl, no it seems to be more waist down with my upper part of the body being affected occasionally. I think I will feel a lot better if I can find out what im dealing with. I will keep you all updated. Thank you.
Hi Venus07. Welcome to the forum You're story sounds rather familiar to me. I also have been suffering for 18-24 months, feel like I'm aging rapidly, neck, shoulder pain and just really stiff in the mornings, it seemed to ease after about an hour. I was also tested for Vit D, pretty non-existent, now back to normal with supplements. I'm 53 and was reasonably fit and active, my bloods also came back normal. My long awaited Rheumy app is 06/07/18 so am also working on the assumption I have PMR. I too have had a couple of flairs where symptoms went through the roof, just terrible 24/7 pain, agony to turn over in bed, walking like Frankenstein's monster to get down stairs, not nice. Interestingly my initial muscle pain was tops of arms, shoulders, neck and back, after the first (And worst) flair I then had lots of issues with my thighs, sometimes pain going into my hips. My GP did agree to try me on Pred, it made a massive difference within 3 days. If it is PMR, BE WARNED!!!!!! it is truly a nasty and unpleasant thing. You will have to make some pretty significant changes to your life, at least for a time, something I gloriously had no real understanding of. My 2nd flair was caused by me, I just refused to believe I was ill, I felt better because of the Pred and had decided I was now going to go back to my life, wrong! I have had so much support, advice and encouragement from the lovely people on this site, please take heart YOU CAN learn and get through this. Kind regards, Mike
Thank you so much. Your case sounds pretty simular to mine. I did feel better with the pain when I woke up this morning. Dragged myself out of bed at 10.30 as i was so fatigued and tried to start my day as usual but no it was not to be. The pain started and hasnt stopped. I hope your appointment goes well on the 6/7 let us know how you get on. Mines on the 16/7. The support from the people on this forum has been fantastic and just being able to taalk about things has really helped me. So glad the steroids are providing you with some relief .
Hi Venus. I forgot to mention I've also been having major issues with fatigue, this only really started after my 2nd flair where I just pushed myself too hard. I'm sure if diagnosed and started on Pred you will have an excellent initial response, as I said in my earlier post just please be careful, as much as you want that to mean all is fine and you can go back to "Normal" it sadly isn't. Are you working? I am, but the chronic fatigue got so bad that I had to reluctantly go to my GP, she was very understanding and signed me off for a month, some days I was so exhausted from getting up and walking downstairs that I just had to sit in a chair for 2 hours to recover, not nice. I'm still off, almost at the end of my 2nd month, there was no way I could have worked with this. I guess the biggest thing I have learnt through this is the PMR is in control and not me, not a lesson i learnt easily! I'm sure my journey thus far would have been easier if I hadn't have been so pig headed (Sadly a story of my life Wishing you all the best, Mike.
Hi Mike1964 so sorry to hear that the fatigue has affected your life so much. It is terrible that we have to live with this. Will you return to work?
I do work 12.5 hour night shifts ( 3 shifts a week), I work in a Maternity unit in a hospital and I am really struggling. I take pain killers before I start the shift and through out the shift. I am also able to take frequent breaks and to sleep on my main break although I am starting to do a few days a month soon as well and I am dreading it as the work is heavier, I will only have 1 hour break and even if I take the pain meds when I get up they wont kick in until after I start. I dont even know if I will be able to get up in the mornings due to the fatigue. At least with the night shifts I can get up a couple of hours before I start and try to mobilise. I am also finding driving an issue too.
Hi Venus. Certainly it sucks! I think for me as I said, upon reflection I've had issues for 18-24 months, went to GP multiple times, lots of blood tests but no answer as to why I feel as I did. I too was taking pain killers, Dihydrocodeine 30mg, I started at 2 a day, at the end was taking 2, 4 times daily. It certainly didn't stop the pain, just took the edge off. I really struggled with work, as I got worse after my last flair found I was taking more and more holiday just because I felt so ill, I just couldn't work. It was a big step to speak to my GP but boy, did I feel better once I had and was signed off. It was almost bizarrely like I needed somebody else to validate how ill I was before I could accept it. The relief of not having to drag myself into work is frankly beyond words. If I had tried to carry on like I was I would have made myself (Even more) seriously ill. Please, please, be kind to yourself. You can and will get over this but only with time, self-love, rest and as lack of stress as humanly possible. I will go back to work, I'm very lucky I love my job (As I'm sure you do) but I must get well enough first. Please may I give you permission to speak to your GP? I'm so sorry but you can't fight PMR like this, It is a beast. Your not being weak Venus, you are very ill. Kind regards, Mike.
My GP has just called me as I emailed her about maybe starting the steroids as I have been unable to get on top of the pain. She discussed my case with her colleagues at her weekly group meeting and they have said it may be PMR or could be Fibromyalgia. So she wants me to hold off of the steroids until I see the Rhymatologist and wants me to up my pain killers. She also wants me to have more bloods done asap and if things get worse then to go in to the surgery as an emergency patient. Im disappointed as I feel that the painkillers are only taking the edge off of it and its 4 weeks until I see the consultant. I think one of my problems is that I haven't accepted the fact that I am ill despite this awful pain. I have always been an active person and the one to look after other people so I am finding it all very difficult especially without a definate diagnosis. I had no idea that it could be something so complex as PMR. Im glad you have had some relief from not having to go to work and I wish you well.
Thank you for your kind words it means a lot to be able to speak to others that understand how I am feeling. I will keep you updated. Thanks again.
Do you think you could ask your GP to give you say a week or so’s supply of pred just to check if it helps? Talking face to face is probably better than email as it is more difficult for her to say no. If pred does help it is likely it could be PMR. Steroids do not help fibro at all. 20% of people seem to not have any reaction in their blood tests which makes diagnosis even more difficult.
Got that tshirt Venus, I've always been a "Doer" I work full-time (Or at least did!), my poor wife has been very ill so I've been supporting her, have 3 children, youngest with special needs, have been cooking and cleaning and spinning an awful lot of plates. It has taken me months to actually realise I'm ill, and a few more to come to terms with the reality of it. I've always had loads of energy and am very used to just doing it. 4 weeks may not sound long to your GP but with all due respect it's a bloody lifetime when you are in constant pain and really struggling to manage life. My pain meds have never managed my PMR pain, at best they take the edge off for a bit. I would very much agree with Piglette below, make an urgent appointment with your GP and beg and plead for her to try you on Pred. If you have Fibro Pred wont help, if you do have PMR you will feel a massive difference in a few days. Really feel for you Venus.
So sorry to hear you have been going through so much. I hope your wife is getting better it all sounds very stressful. I hope someone is supporting you through this difficult time as you need to look after yourself as well. Yes 4 weeks is too long Im going to see my GP next week I cannot wait until I see the consultant. Im going to show her the info that PMRpro posted for me.
Your GP is being a bit silly. If the choice is PMR or fibromyalgia there is a very easy way to decide which: you give the patient a week of 15mg pred and see if it helps. PMR responds, fibro does not. Seemples...
15mg of pred has fewer serious side effects than the painkillers she happily hands out - and which will do nothing for either PMR or fibro. If a week of pred helps - that puts you at least a week ahead when you see the rheumy. And if it doesn't work - you stop. That's all there is to it.
So after what has been the week from hell with pain again I have seen my GP. Despite being armed with the info that PMRpro posted and a diary of my symptoms she has again refused to give me a trial of steroids. Her reason? She is convinced I have Firbromygalia and not PMR as this week it has been my left hip and thigh area that has been painful. She seemed more interested in my blood results.
ESR, CRP & Liver function normal
VIT D low
IRON elavated- could be due to inflammation
GLUCOSE now in diabetic range despite following weightwatchers flex plan. This seemed to be her main concern and obviously mine however Im still in pain and unable to do everyday tasks. Im awake most of the night with the pain which is so bad it makes me cry and wakes my husband. Im taking Co codamal which are not doing anything. Im exhausted from not sleeping and feeling very run down to the point I now have mouth ulcers. My appointment is on 16th July with the rhymatologist which seems like an eternity away. She has prescribed me Diflafenc for inflammation which I have yet to pick up from the chemist as Im in too much pain to go out. Ive tried warm baths but that doesnt help and getting in and out of the bath is painful. Ive tried walking as exercise but again too painful and have had to phone to be picked up as I cant make it back home. Im really worried that when I do see Rhymy on the 16th that Im going to come away with no answers and be in the same situation. My appt letter says to allow 2 hrs as they need to do tests. Does anyone know what tests they will do? Apologies for the long post
What a stupid doctor - a week of trial pred would give her an answer without doing any harm at all. If it doesn't work then she was right.
Have you tried taking your husband to the GP with you - it seems to concentrate their minds somehow.
I had a physical exam and case history done, was sent for bloods to be taken and an x-ray (showed nothing...). Then 6 weeks later the physical and case history was repeated at the follow-up appointment by a different doctor (non-rheumatology qualified GP with a "special interest") - hadn't a clue, called the boss, who hadn't a clue but wasn't willing to say PMR (wasn't serious enough a diagnosis one got the impression). Luckily I had finally found a sensible GP who cared I was in pain and 15mg pred did the job in a few hours.
And if this is the NHS - 2 hours is in their dreams. Except you may well be in the waiting room that long
How terrible it took so long for you to be diagnosed and given your pred. I honestly do not think these Gp's have a clue about how much pain we are in. I asked about work as well as I work 12.5hr shifts days and nights. I had been fortunate (if thats the right word) that I have had this flare up mainly over my annual leave and then 4 days off due to how my rota fell but returning to 5 nights in 6 days I was very apprehensive. GP told me she felt it would be a distraction from the pain by going to work! 😂😂. I returned to work last night as I did feel a bit better however now I can barely move again and in alot of pain so im going to stay off until I manage to get the pain under control. My husband is coming to my hospital appointment with me hes been unable to get the time off to come with me and like me assumed the Gp would give me the steroids. Poor man has been left to care for me, hardly had any sleep due to me keeping him awake still had to work and take over all the house work etc. Its affecting us all as a family
Im crossing the days off until my appointment on the 16th.
What I didn't say was that I had had PMR symptoms for 5 years before that appointment! My blood markers were always low - so there couldn't be anything wrong according to the GP I usually saw in the practice. That's why I always suggest people try a different GP until they find one who listens and cares.
Ive also had theses flare ups and on off symptoms for around 5 years but Gp has always blamed it on my low vitamin D levels and just given supplements. I will wait until I see consultant and then change my Gp. I cannot carry on like this .
If the supplements are high enough then your vit D should go up - and if the symptoms are due to the low vit D they will improve, even if it takes a few months.But if he just hands out Adcal or the like that will do nothing, barely keep you where you are and not raise the level. For that he needs to give you something like 60,000 IU per week over about 2 months before reviewing - repeat if necessary.
However - he would do well to remember that low vit D is associated with autoimmune disease. These symptoms are typical of autoimmune disease too.
When I saw the rheumie he diagnosed PMR in five seconds. My GP had said on my notes I just felt unwell...... For several months...... He said it was nothing serious. The rheumie prescribed steroids and I had a vast quantity of blood tests. The rheumie checked my movements, blood pressure etc etc.
Sorry you are suffering so much, it took me a while to see a Rheumatologist . The Dr was unsure what was going on with me, tried all sorts of medication which didn't help at all. The Rheumatologist diagnosed me after a few minutes and put me on steroids, which worked wonders. I was glad to get relief from the steroids for the past 2 years. Recently due to new symptoms arising, my Rheumatologist diagnosed a secondary condition, Fibromyalgia. So now have to tackle with both, as well as Osteoarthritis in my spine. I hope you get sorted soon and find relief.
So sorry to hear that you are tackling both conditions as well as your spine I cannot begin to imagine what you go through. Im going to have to try and sit tight until I see the consultant and hope that he is able to sort it out for me.
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You're story sounds rather familiar to me. I also have been suffering for 18-24 months, feel like I'm aging rapidly, neck, shoulder pain and just really stiff in the mornings, it seemed to ease after about an hour. I was also tested for Vit D, pretty non-existent, now back to normal with supplements. I'm 53 and was 
reasonably fit and active, my bloods also came back normal. My long awaited Rheumy app is 06/07/18 so am also working on the assumption I have PMR. I too have had a couple of flairs where symptoms went through the roof, just terrible 24/7 pain, agony to turn over in bed, walking like Frankenstein's monster to get down stairs, not nice. Interestingly my initial muscle pain was tops of arms, shoulders, neck and back, after the first (And worst) flair I then had lots of issues with my thighs, sometimes pain going into my hips. My GP did agree to try me on Pred, it made a massive difference within 3 days. If it is PMR, BE WARNED!!!!!! it is truly a nasty and unpleasant thing. You will have to make some pretty significant changes to your life, at least for a time, something I gloriously had no real understanding of. My 2nd flair was caused by me, I just refused to believe I was ill, I felt better because of the Pred and had decided I was now going to go back to my life, wrong! 
Is it PMR?
PMR
PMR or not?
Pmr
Not PMR
