Have I got PMR?

Hi Bob,

I wish I could help but being new to this myself, all I can offer is some sympathy.

Your story is very much the same as mine. I started with a chest infection, I am in pain, sleepless, waiting for a bloodtest, medicating myself with Ibruprofen and scouring this site for answers.

I just wanted to say hello and hope someone else can help you.

All the best,

Tilly

Hello Bob and welcome. I'm sorry to hear of the trouble you are having in getting a proper diagnosis, and can so sympathise with how you are feeling as I was in the same position for a year before diagnosis.

Firstly, your pain areas do sound classic of PMR, although there are many other arthritic conditions with similar symptoms. For instance, have you had a blood test for Rheumatoid Arthritis? I ask this because when I went for a private second opinion I was told that if I didn't have rheumatoid arthritis then I had PMR!

Although it is usual with PMR for CRP and/or ESR blood tests to show raised inflammatory markers and this is then how a firm diagnosis of PMR is usually made and steroids prescribed, there are some sufferers who are diagnosed with PMR even though they have normal blood test results.

Secondly, if the steroids relieve the pain within a few days then that is usually a sign that the right diagnosis of PMR has been made.

However, if this is PMR, then I am surprised that you are able to walk 2/3 miles \"without too much problem\". It does sound as though the severe chest infection may have triggered some inflammatory condition and you need to be referred back to a rheumatologist to get to the bottom of it. Sorry not to be able to be more helpful but hope this has been able to answer some of your questions. Good luck and do get back to us and let us know how you get on.

MrsO

Bob

Yes, it could be PMR and yes you could still be able to walk 2 - 3 miles, as some of the men in our support group have been able to do this as well as having PMR. And yes you can have PMR without a raised ESR rate.

However you did need a diagnosis. Visit www.pmr-gca-northeast.org.uk and read the Guidelines issued by the British Society of Rheumatology in June 2009. These guidelines are also to be found of the NHS website.

Check also to see if there is a support group near you.

I hope this is all helpful to you. Keep on coming back to this site as there is a wealth of information out there from patients.

Hi Bob,

Sorry to hear you feel so rotten. When I first started having symptoms I went to the Doctor and she ran loads of blood tests. My ESR never was and never has been raised. My CRP was very slightly raised but not enough for the Doctor to consider PMR or to put me on steroids. I could barely move, in a lot of pain and at my wits end, so I telephoned a Rheumatologist privately and she said it was not entirely unusual for the bloods to contradict the symptoms, she put me on 15mg Prednisolone and said if there was a marked improvement then I had PMR and if Prednisolone made no difference then it wasn't. I felt better in hours. My CRP did eventually catch up with me, which again, my Consultant said wasn't that unusual. My advice would be to get back to your Consultant ASAP. They're dealing with our type of illness on a daily basis, GPs are in general medicine and cannot be expert at everything. Do hope you get sorted out soon - don't be afraid to contact your Consultant for an emergency appointment, mine's a brick and always fits me in if I need to see her. Good luck.

Lizzie Ellen

Many thanks for all your replies which have been extremely helpful and lead me to believe that it most likely is PMR. I am seeing the Dr on Thursday (if the snow stops falling) but armed with a lot more knowledge on the subject than I had previously so thanks again.

Tilly - I hope you too get sorted out quickly. As others have said on this site the steroids are like magic and relieve the symptoms very quickly. I noticed a difference in less than 24 hours so there is hope.

Bob

Hi there as the others say it does sound like PMR symptoms The first time I had PMR My ESR was not raised and even my CRP wasnt that high but my Doctor was convinced I had PMR but the Practice said I couldnt have steroids until I saw a Rheumatologist I saw one privately as I was in agony He was very thorough with my History and did 17 blood tests !!!! and confirmed PMR I responded so well to 20mg and was off them completely in 2 years ( I was 54 on diagnosis ) and very active I have horses went to Aerobics and Gym and managed to do most of this with the help of steroids in this time I managed to live a normal life until 60 till it came back This time I had raised ESR and CRP and my steroid reduction certainly hasnt gone so well and I have had recent wrist pain and more muscle pulls and general aches I have tried at least 4 times to get below 5mg What I am saying really in one person the illness has shown 2 different variations so we are all different I dont think blood tests alone show everything my Doctor always says you know how you feel and she has been wonderful The other thing is dont push yourself too hard I feel I might have helped my PMR return by overdoing it I have land with my horses and was doing loads of physical work just before it returned I notice now if I overdo it my aches are worse I think you did a thread on another post about this happenning to active people ?? Well a Practice Nurse did say to me once that she thought I was young to have it at 54 but a Rheumatologist had said to her it seemed as if the younger people it attacked were very active ( I dont think that was a scientific study just an observation ) Good luck with your blood tests but insist on a Consultants opinion if you arent happy As far as I am concerned life is very precious and an active life is more precious ( I keep records of everything that happens and blood tests etc as we all have to help ourselves also Cant wait for spring to feel warm again !!

Thanks Bob.

Being snowed in has been good for me as it has forced me to rest, sleep in when I have a bad night (like every night!) and take stock.

I have had time to read more posts on this site and get more information about PMR.

More heavy snow is forcast here tonight, light snow each day until Sunday when we have heavy snow again. With minus 6 degrees tonight, it won't be pleasant out there.

Good luck for Thursday. I hope the snow doesn't stop you getting there.

Tilly

Thanks Tilly and Mrs G

Mrs G your experience and advice is really helpful because I know that at the first sign of an improvement I will be wanting to run marathons again which is likely to do me more harm than good in the long run. Being active is my life so I just don't know how I am going to cope with a forced level of inactivity but hopefully I will still be able to participate at a reduced level if I am sensible about it (that will be a first!).

The snow down here is deep, thick and even which is very rare in this part of the country where we only see snow every 10-15 years so its a real novelty. I can't get off my drive so no work today which is a bonus. Hope everyone else is coping ok.

Regards

Bob

Hi Bob,

I know how you feel about taking life at a slower pace! Until PMR decided to pay me a visit I was very active. Travelling a lot, going to the gym at least three times a week, walking every day and generally whizzing around my day to day life. I've had to slow down considerably but decided that if that's what PMR wants, then that's what I'll give it, in the hope that it will go away quicker. So far, so good. Already reducing the Pred and that's going well. Have a bit more energy now and not getting the awful fatigue that plagued me to start with. I'm 8 months into this now and seeing a little improvement every day. I was going to start swimming again this week, but the snow says otherwise. Can't even get down the drive at the moment, but hope that swimming will be a start back to fitness. I sympathize with your snow situation, same here in Basingstoke although we often get it when you don't. Hope your football team sorts itself out, although as a Saints supporter I shouldn't be showing any concern should I :lol: . I'm trying to look on my enforced slowing down as a way back to good health, trying to turn a negative into a positive. Hope it works for you. Good Luck.

Lizzie Ellen

Hi Lizzie

And there was me thinking Saints supporters couldn't read or write!

Only joking.

Have a good one

Bob

You have to be a bit mad to support Saints but as my Dad and my brother insisted on it when I was young its sort of stuck with me. Still basking in the glory of winning the cup all those years ago (but haven't done too muc basking lately!!) Keep well.

Lizzie Ellen

Hi All

Thanks for your support but I saw my GP today who said that my blood levels are not raised so I DON'T HAVE PMR. She wouldn't listen when I tried diplomatically to point out that 20% of cases don't have raised levels according to the Patient UK website and insists she knows best. Anyway, I now feel so much better knowing that all these aches and pains in my legs, shoulders, arms and hand and sleepless nights tossing and turning are no more than a figment of my imagination.

Anyone got a spare gun!

Bob

Oh Bob, I am so sorry.

It must be devastating for you to be dismissed like that. I think you are entitled to a second opinion.

From reading this forum, I know that it isn't that easy to dignose PMR but surely your doc has given you a reason for your symptoms?

Please ask for a referral to a consultant.

I am sure that the other more experienced and better informed folks will come along soon with their sage advice.

I do have a gun but I am not going to lend it to you! Well not yet! LOL.

Poor you Bob. Its exactly what happened to me. Get to a Rheumatology Consultant, quickly! I forked out privately but its was the best investment I've ever made. After just one initial consultation she transferred me to the NHS. I find it very frustrating when just a 5 day course of Prednisolone will confirm whether you have PMR or not. Do not dispair, get an expert opinion. Wish you the very best of luck Bob.

Lizzie Ellen

Hi Bob and so sorry to hear of your experience with your GP today -how can she be so arrogant and dismissive of your problem and send you home continuing to suffer without any help or advice? At the very least she should have suggested further tests or referred you back to the consultant. If I were you I would ring the consultant's secretary and, as Lizzie Ellen has said, get a private consultation with him if necessary.

It does seem that your prolonged chest infection was the trigger in your case for all your pain. Did you have antibiotics at the time of the chest infection? I ask because I was once talking to a man who had suddenly experienced all the same painful symptoms as me...his GP treated it as a virus/infection and put him on a week's course of antibiotics together with 8 weeks supply of steroids and he completely recovered. Unfortunately, as you have experienced, it seems not all GPs are so clued up and helpful.

I do hope you achieve some satisfaction on the 'phone tomorrow - it's your body and they have a duty and are being paid to look after it! Good luck and let us know how you get on even if it's only to let off steam - lots of us have been in a similar boat and we all understand.

MrsO