I am 57 and have always been active--hill walking, golf, sailing, etc. In 2002/2003 I sailed round the world, and about a year later suffered from an unidentified virus which caused severe headaches over a 3 month period before departing as quickly as it arrived. Early this year I began to feel unusually tired, with tight hamstrings and neck and upper arm pains. I blamed it on my wife's \"to do \"lists but with no sympathy!! When I went to my GP she thought the symptoms unusual and sent me to see a Rheumatologist who immediately said I had classic PMR symptoms, confirmed by blood tests. She put me on a dose of 15 mgs of prednisone, to be reduced after a month to 12.5 and now to 10. Some pain has returned but my blood tests are back to normal so she is advising me to remain on 10 for a couple of months before reducing further by 1 mg per month. I currently get tired quickly (especially with home chores) but can play 18 holes of golf and carry on most of my normal activities, albeit at a reduced level. The only clear side effects from the steroids seem to be sleep patterns--quick to go to sleep, but after 3 hours I am wide awake--and for someone who could always sleep through anything, this has been frustrating.My weight may have increased a bit, but as I am taking less exercise, that may be expected. So, at this point, I should not complain too much, certainly in comparison to others. But of course all things are relative and I would like to be back to full health. Nor do I want to have any lasting side-effects from steroids, so the sooner I am off them the happier I will be. I do wonder, having read some of the experiences of others on the \"Patient UK\" web page how I fit in with other peoples experiences. Most of those writing in seem to be more severely affected than me, and there are few stories of full recovery, and yet the medical view is that \"most\" people suffer for 18-24 months before making a full recovery. Maybe it those with severe cases or poor diagnoses who feel compelled to write, but it would be good to know that there are \"mundane\" PMR sufferers like me, and that they do get better!! So there you have it-should be too young to get PMR, not female, and not too severe--anyone out there in a similar position? But I have been pleased and fortunate with the medical help. David
David
Just a thought: my only experience of really bad sleep was when I first started taking the steroids which had to be done urgently on return from the GP in the mid-afternoon as he had diagnosed me with both GCA (which can cause blindness if not treated promptly) and PMR. I gradually reduced down to an earlier time of day and have been told that they should be taken early in the morning with or immediately after breakfast. If you take them later in the day, they will keep you awake at night. As I said, just a thought in case you were taking them later in the day. Good luck for a speedy resolution.
Mrs O
David M
We know it is more difficult for men to talk about their experiences as they can be quite different to the woman's experiences. Not that much mind you but different.
There are five support groups that we know of at present throughout the UK.
And we also have set-up a group of men who email each other and swap information, as well as keeping in touch, either with a support group and/or pmrfighters@yahoo.co.uk.
Email us at that address if you would like more information and/or join the 'email men'.
In the meantime, go with the flow and listen to your body.
:idea: from mrs K
Thanks for both replies. I have recently changed the timing of my steroids to mornings on the advise of my GP but with no change in sleep patterns. I have also written to PMR fighters and filled out the research questionaire. David M