Posted , 8 users are following.
Hi All
This is a really great site and has a lot of useful stuff for a newbie like me so many thanks to all the contributors and fellow sufferers.
I have lots of question I want answers to but the main one is have I got PMR? because my consultant and GP seem to disagree on the diagnosis or the treatment and I am feeling like piggy in the middle right now. I have outlined the progress of my complaint below and would be very interested in hearing how these fit the experience of others.
Background. I am 62 years old, been fit and active all my life and up to 4 months ago regularly ran 10 miles, went to the gym, played competitive bowls etc. At end July/Aug 09 I developed a severe chest infection and cough that lasted for most of August and September. In mid Sept the first signs of my current complaint started with a strained feeling in the inside of my left leg from the hip joint to the knee. This was so painful that I couldn't lift my leg off the floor and sleep was difficult. I hobbled around for a bit and then a week or so later my right leg started to play up and both legs felt as though I had just run a marathon. I saw my GP who said it was muscular and put me on a course of Ibuprufen. A week or so later my right shoulder started to hurt really bad and then another week later my left shoulder. The most recent development is my right wrist and hand which are so painful in the morning that I struggle to butter a slice of toast. I ache all day but nighttimes are especially bad and the aches and pains in my shoulders/arms and hands keep me awake. My legs though are still achy but much improved and whilst I still can't run I can walk 2 or 3 miles without too much problem which I don't understand given the state of the rest of me. In the morning especially I am like an old man and so weak I would loose in a fight with my 18 month old grandson.
My GP and consultant disagree with the diagnosis because my blood tests do not confirm it and my GP took me off the 15mg dose of steroids the consultant prescribed after a couple of weeks even though I was much improved. The past 3 weeks, since I stopped taking the steroids, have been really bad and my quality of life just above zero so I am seeing my GP later this week to sort it out because I can't go on like this.
Apologies for rambling on like this but any advice would be most welcomed.
Many thanks
Bob
0 likes, 44 replies
Guest
Posted
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
MrsO-UK_Surrey
Posted
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
mrs_k
Posted
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.
Lizzie_Ellen
Posted
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
Bob_the_Builder
Posted
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
Mrs_G
Posted
Guest
Posted
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
Bob_the_Builder
Posted
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
Lizzie_Ellen
Posted
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
Bob_the_Builder
Posted
And there was me thinking Saints supporters couldn't read or write!
Only joking.
Have a good one
Bob
Lizzie_Ellen
Posted
Lizzie Ellen
Bob_the_Builder
Posted
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
Guest
Posted
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.
Lizzie_Ellen
Posted
Lizzie Ellen
MrsO-UK_Surrey
Posted
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
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