Back pain and PRM - and sorry to "go on" but this is my first ever blog ...

[HelenJC]

Having written this, I may have "gone on" a bit, so if you aren't interested the history of my diagnosis bit, skip to the last 5 paragraphs containing the questions I am asking ... and if you read it all, congratulations for your perservence!!

I am 64 was diagnosed with PMR in July and think I was quite lucky to get it done so soon. I had been feeling "off colour" for some time, (not sure if that was anything to do with PMR) but after doing a mammoth spring clean (we had just put our house on the market) started getting back pain in early May, which got worse and worse.

Doctor referred me to the Musculo-Skeletal service and whilst waiting I had some private physio and acupunture. Everyone thought I had pulled something, and no one was interested in the fact that my arms/shoulders hurt, but that could have been because I had surgery on both shoulders. I was told it was because I was using my arms more to get in/out of chairs and move in bed. I went back to the doctor cos the pain got worse and was given anti-inflamatories (which I didn't really want as I have IBS). I saw the Musculo-Skeletal service and was referred for an MRI scan. Middle of June I went back to doctor again as I was desparate to have something which would control the pain and he gave me a 5 day course of Pred, 30mg. The relief was quick and amazing. But, you can guess what happened - within 24 hours of stopping the Pred I was in so much pain I could not get out of bed, and when I did get vertical I thought I would pass out as everything went black with green and purple flashing circles. Had to call a doctor out, and was put back on the Pred and within hours was much more comfortable.

When the Musculo-Skeletal unit rang with the MRI scan results (which, surprise, surprise, revealed nothing to explain the pain levels) I said how the pred had work, what happened when I stopped, and that I could not understand why my arms hurt so much.They said "I wonder if there is a poly myalgia going on" ... and of course, when I then looked it up on the internet, it fitted perfectly.

My own doctor accepted PMR fitted, and also fitted in with some the blood results I had had done.

Sorry to go on so long about my history, and hope I haven't bored everyone to sleep! But, I do have a question to ask:

One of the things was was revealed by the scan was that I have some age related degeneration in my back. Nothing serious, and I am working on an exercise routine to strengthen my core muscles, to reduce the possibiity of needing hip/knee replacments being needed further down the line. WHen I was on my 30/mg a day I had no pain, which was marvellous. I am now down to 17.5mg and to have pain in my back, but not in my arms and very little, if any in my buttocks and hips (and then usually because I have been sitting at my desk too long, working) I am not sure if the back ache is my underlying age-related degeneration, or if PMR also gives that sort of general ache, as opposed to the severe hip/buttocks and arm pain.

Anyone got any ideas?

Also, I SO TIRED! AND my head doesn't belong to me, but that does seem to be improving as the pred is reduced. I don't know if the tiredness is to do with PMR or the pred.

My doctor is very good, and I am seeing hime every couple of weeks, and having regular blood tests. I may have reduced the pred a bit on the quick side, but am rather taking the view that until my arms hurt, the back pain is probably not to do with PMR - but am not sure ...

[trishyb]

Hi Helen I was very good and read all your blog lol I started with the symptoms last August and was finally diagnosed at the end of November. Like you I was started on 30mg with instant relief (the joy of being pain free). I am now down to 9mg since yesterday and so far so good. I find that if I overdo things I get what I call 'flare ups' where I get very achy around the shoulder and neck area and down the arms and legs. I also find that in the early evening I get terrible back ache sort of in the middle of my back and always in the same place. Once I sit down for half an hour it slowly disappears only to return the next evening. I'm not sure if it's related to the PMR but tend to blame it on that as I never had it before but then the ageing process is never far away so who knows.

[Hidden]

Hi Helen,

It all sounds very familiar to me. The high dose of pred knocks the pain for six. Once below 20mg the pain returning and the mental effects etc. Having to pace yourself continually. I had more bad days than good between 20 and 10 mgs. I could only reduce 1mg every 2 or 3 weeks.

PMR effects the major muscles of the hips and shoulders therefore, the pain and stiffness will radiate to other muscles that surround these areas. In my case, the pain can often go down into my chest area and also into my back, especially the area between my shoulder blades. It usually improves with exercise. I also suffer from tendonitis quite a lot. It comes and goes, causing pain in my elbows and knees and numbness and cramp in my hands and feet. Is it caused by the pred or PMR? Your guess is as good as mine. All I know is that it tends to come on when I've reached burn out and the only thing I can do then is pace myself and rest as much as possible.

When I was on 17.5mg my head often felt weird too. That's the pred for sure. It gets better as you drop the dose.

I'm now down to 7.5mg and feel lots better. I don't overdo the exercise. Doing all the housework, gardening and cooking is enough for me. I always take the car when I do the weekly shop - no carrying heavy weights too far. When I was really ill, I couldn't carry my handbag more than a 100 yards. Those days are gone thank goodness, but I don't push it. I did that 20 months ago for the last time and PMR was born.

Pats

[HelenJC in reply to Hidden]

both those comments are really helpful. I am not sure how much my doctor really knows about PMR - he's really sympathetic but when I said I had general backache he didn't seem to think it was the PMR. But I suppose when you have something like this, it is very hard to know what is very much down to PMR (like the pain in my arms) and what is the PMR interacting on pre-existing conditions.

I know I shouldn't push myself too hard - but because I am still working (fortunately mainly from home) doing 3 part-time jobs, and financially not in a position to retire from them until the house sells (which could be sometime never in the current market) I do have to keep trying.

We are going on holiday for 3 weeks, touring Italy with our caravan (leaving 1.9.12) and although I am really looking forward to it, am not sure how I am going to cope - the tour includes a lot of pre-booked excusions. So I might come back needing a holiday!! The doctor has promised to give me plenty of supplies of pred and AA and calcium supplements and goodness knows what else!! Not sure I will be allowed across the border - I might be arrested as a drug dealer!

[Sue8]

I have backache also, My arms are ok today but the back of my neck down is rather achy. I have sat embroidering most of the morning but it is still there.

Have a fab trip around Italy it sounds great but yes you will probably need to rest when home.

[MoiraCT]

Hi Helen

It does all sound horribly familiar. My GP explained the tiredness was clinical fatigue caused by the auto-immune disorder, ie PMR, and also living with pain is very tiring. As I've slowly got better people have remarked that they can't see the strain in my face now. I'm now back at work on a phased return after a 6 month absence, and haven't managed more than 4 hours at a time. My head starts to fizz (don't know how else to put it) and I lose concentration. Most people would say this was pred head, but I'm going the natural route without steroids, so I think it is just fatigue.

You don't say where your back pain is centred. Reading your blog reminded me that the pain between my shoulder blades was awful for months, but there has never been any lower back pain. The chiropracter kept saying how stiff my lower back was and that was apparently also due to PMR. In my experience the PMR pain varies from sharp and excruciating to a more general ache.

Hope this is helpful and wish you all the best. The first thing I remember the chiropracter saying to me when no-one knew what was wrong was, 'You're the one who cares the most about your health, so you have to take responsibility for it.' It sounds like that's exactly what you're doing.

Moira