I started suffering bad neck stiffness and then back and eventually hip stiffness about 6 weeks ago (early March 2023). I'm 56 and a very keen cyclist (normally 8-12 hours of cycling a week), and so am not used to feeling like an invalid!
I find cycling OK, although my legs feel very heavy, but walking is uncomfortable, and putting on my socks and shoes is very painful! My sleep is suffering and turning over in bed is very painful. All standard symptoms I think.
But, last week I had blood test results which showed everything normal apart from a erythrocyte sedimentation rate of 14mm/hr (normal 2-10), so the doctor has left me to my own devices apart from some stronger pain killers (Naproxen), and suggested I should perhaps try and come off the pain killers.
Some days, once I get going, I'm ok most of the day, altho I do hobble around a bit and get stiff if I keep still (I have a desk job!), but often its bad in the evening again.
I was wondering if I should just wait and see, perhaps just use the Naproxen when i think I need to only), or whether I should re-contact my GP and get something more done/investigated.
Also, what would you recommend regarding exercise - I think that mild exercise helps, although maybe I then feel later on - not sure!
Looking forward to any suggestions/help/support/advice
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fast_peddler
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If the Naproxen is giving you relief, it may not point to PMR, as painkillers are usually not much good for PMR, it is just steroids that really help. Some doctors offer patients a week’s trial of around 15mg of steroids which can work like magic if it is PMR. You could suggest thus to your doctor. ESR can sometimes not be raised for some people, so it does not always work as a diagnostic tool. Some of the symptoms you mention could be PMR, sadly PMR is diagnosed by discounting everything else, there is no other way of easily diagnosing it.
Hello, have you been diagnosed with PMR and not prescribed steroids but given Naproxen instead? On the face of it your symptoms sound very like PMR and normal blood tests with raised inflammatory markers is usually all you get in the way of confirmation after documentation of your symptom history. Unfortunately, Naproxen is not very effective in controlling the inflammation from PMR which really needs to be taken in hand by prescribing Prednisolone. Do have a read of this which is usually sent to new people by volunteer DorsetLady. It will hopefully fill in the gaps that the GP seems to have left in the explanation of PMR.
Your symptoms sound very similar to mine when I started. But I wasn't diagnosed for about 8 months by which time, the inflammation had built up so much that I was turning down work and wondering if I would be disabled for the rest of my life. I was 59. Then a new GP at the practice put me on 15mg of Pred saying that if the symptoms go, it's probably PMR and if they don't, it probably isn't. They went - within about 6 hours!
It took me 3 years to get down to pred zero but I was able to continue working throughout and now (touch wood) am PMR and pred free.
So if the painkillers don't work, then do ask about PMR and a short trial of pred. If you catch it early, it might make it easier in the long run!
SnazzyD has kindly forwarded my intro post - so please read it. Have you actually been diagnosed with PMR - if so, naproxen will do little for it..my GP tried that prior to my GCA diagnosis- absolutely useless.
This post gives advice on exercise, but if it is PMR, it not just a case if carrying on as usual…affected muscles need more care and time for recovery -
You do need a proper investigation and proper treatment, the longer you are left in limbo, the worse it is likely to get. Plus once you have a definitive diagnosis, your work can make any necessary adjustments…if it is PMR, it ain’t going anywhere soon.
Well if you have the symptoms -as well as familial connection -despite the blood test being okay (although are you sure that was ESR -sounds more like CRP ranges) -you could ask for a short trial of Pred to see if they help. Say two weeks…
..and if it is PMR it is likely to get worse -plus ease up on the cycling - as I said PMR muscle need more TLC and time for recovery
It is possible that you are in the early stages - my first symptoms in the early spring were difficulty in getting my arms above my shoulders when sleeping, that was my favoured position. Later in the summer, about May/June I was finding it increasingly difficult to do step classes, and come late September/October I went to the gym to prepare for the winter skiing season and a couple of minutes on the cross-trainer caused excruciating thigh muscle pain, claudication, it stopped when I stopped. I changed gyms to one with a pool instead and was able to ski that Christmas as usual, and kept going by doing aquafit every day to get moving. That was when the PMR really manifested but it wasn't recognised or diagnosed for another more than 4 years - after I had worked it out for myself after waking one morning unable to move just after having had a TGA (transient global amnesia). The doctors disagreed about that too and I was told to surrender my licence (should just have been told to not drive for a month) and I was housebound in the UK. I managed to get here to my flat in the Dolomites and once I'd recovered from the journey (I slept for 3 days!) I got my skis to the storage facility so I didn't have to carry them every day and went up the mountain most days and did a few very short runs, sat in the sun and then came home. Part of the problem had been the stairs in the UK - we'd just moved from a house with 3 loos strategically placed so I only used stairs once in the morning, once in the evening, not every time I needed to go! Here the flat is on one level and there is a lift! I found skiing the perfect hip and shoulder action to sort the stiffness.
So what I'm saying is - yours may progress. And if it does, Naproxen almost certainly won't cut the mustard. I found evenings were better after a glass of wine.
Normal range ESR is up to 20 - your figures don't fit, as DL has said. But neither my ESR or my CRP were ever out of normal range - my ESR bumbled along at 16-18 at a point where I could hardly move but it wasn't considered out of range. It was, however, very raised for me, my normal ESR is low single figures. That is not unusual in younger patients and I was in my early 50s.
Before I was diagnosed I found that only two things lessened my pain (moving and deep heat aka. hot tub or sauna). If I rested, the pain returned. I was also young (48) and very fit (working out regularly) when it hit me. If it is PMR and you do start steroids, I would caution a slow return to activity. It’s east to think it’s gone and we can return to full activity but it’s not gone. The disease is just being masked or managed by the prednisone. So you may need to work out a new normal for your activity types and levels. If it is PMR, you will likely see that ESR continue to rise and you’re pain increasing or spreading to other areas of left untreated. I went from slight groin pain to not dressing myself and struggling to walk in just a month.
Did you only have an ESR test? The classical definition of PMR is "an auto-immune illness characterised by over production of Interleukin-6". IL-6 causes a raised CRP and I was always lead to believe it is a more reliable marker for PMR than ESR alone? Whilst there are some patients for whom raised ESR and CRP does not occur I think it would be worth talking to your Dr again to see if they would check your CRP. For reference, when I began my PMR journey my GP tested for everything, including Lyme disease, Immunoglobulin profile, Rheumatoid Factor and anti-CCP. I think you need a clearer picture of what is ailing you and then appropriate treatment can be started.
It is all very complex - the IL-6 test hasn't been universally available and ESR and CRP are actually not consistent. My ESR was raised for me but not out of normal range. The only time my CRP was raised was on a day where I was having a severe atrial fibrillation episode. It too is also not very specific and can be raised in a wide range of conditions.
Yes, I agree and having re-read the original post "fast_peddler" does say blood tests were done and only ESR raised slightly but we don't know what tests. Clearly there is something going on....?????
The last few days I've taken much less Naproxen and I'm not on anything else, I havent done any extreme exercise (just a bit of walking around the office and some mild stretching), and each day I've felt less sore and have greater non-painful range of movement in my legs and shoulders.
I'm going to leave it another day and see what happens, whether it continues to improve, and then do some more extreme exercise (a bike ride probably) and see what the result is. Cycling in the hills (Peak District) is really important to me, so i need to know how it interacts with what ever it is I have.
sorry am late to the post. All your symptoms echo mine. I'm now 73 but 4 years ago completed 6 days in dolomites . 550 miles and 55,000ft climbing. averaged 12-13mph . 2020 I did 2 weeks in s.spain mountains. used to do 60 miles in 3 hrs so I know where you are coming from.It took over a year to diagnose by which time I was nearly crippled. Don't delay or you may acquire GCA as well like me. You wouldn't want that. Try pred. for a few days. If it's pmr then you should get relief quickly. I tried everything before and nothing worked
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