Its been a while since i've put on a post, but I find myself in a predicament and would value your opinion. I will try and keep this as short as possible.
I am a 57 year old lady, and was diagnosed with PMR 4 years ago. Like many of you I'm sure have had a very bumpy ride! I am currently on 2 mg of prednisolone and have been struggling for a couple of months now. I have had regular blood tests and more so recently, they have all come back within normal levels and I'm told my PMR is in remission. I have built up a good relationship with my Rheumy, and he is quite clear that these pains can no longer be PMR, and I must have some Fibromyalgia.
I am suffering so badly with muscle pains, although worse than when I was initially diagnosed, but now also including knee pain. My knees feel swollen, although they are not. I am a side sleeper and have to use a knee pillow as they are so painful on the inner knee to touch. My Rheumy says this is classic symptoms of Fibromyalgia apparently. I also have awful shoulder pain which goes down the arms and hip pain. If I sit for any length of time, when I get up to move its very slow and painful to walk because of my knees and hips. This gets easier once I'm up and about. I am a keen swimmer and have to use the steps which I have never done, and cannot swim all the strokes I did because of knee pain.
I am really very low and cry a lot. I think this is understandable with everything going on. I have spoken to my GP and Rheumy about this and that I don't really want to go down the route of more meds.
So this morning, at the end of my tether with all the pain and finding it difficult to sleep, I decided to make contact with my GP in order to get some pain relief. He suggested that Rheumatologists are very black & white, just using blood results to diagnose. He thinks it would be a good idea to up my steroids to 15 mg for a few days and see if my symptoms are relieved. If all he pain goes then surely this is PMR.
I am exhausted mentally and physically, and I really don't know which way to turn. As you will see from my chat name, I was never happy about being on steroids, but have come to terms with the fact they are a necessary evil! It does seem like a good idea to up my steroids and see, I even suggested this to my Rheumy a few weeks ago, but he didn't agree. My GP has now suggested it? But this knee pain is not a classic symptom of PMR.
Any advice will be gratefully received.
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I didn't think knee pain as you describe was a symptom of fibro either! Actually, PMR affects the soft tissues around the joints and I did have knee pain at one point, especially when walking downhill. One rheumy claimed it was OA, but 13 years later there was no sign of OA on an x-ray (something she didn't do). As for "these pains CANNOT be PMR" - why not? It sounds very PMR-ish. That doesn't mean it isn't - nor does pred relieving the pain, other things will respond to pred but not usually as quickly or to a low dose.
The question is whether 15mg is enough - it might not be but 20mg for a week would almost certainly be enough to give an answer. Once you know that, you can work from there. No-one likes pred really, even I would rather not be on it, but in terms of quality of life, that has to come first. I had 5 years of PMR without pred and believe me - it is NOT a pleasant experience. I suspect it also has something to do with how long it has gone on now I am on pred - it is a common experience.
If it were me I would work with the GP to start with. You aren't going to get anything practical out of that rheumy at present.
Its strange then that my rheumy said it was a classic symptom. I have also had x'rays to both knees and nothing to report. This certainly feels like inflammation to me.
I have had 4 replies and feel that you all agree, there is nothing to be lost by trying this approach.
I do wonder though, if all the pain goes and the world is a better place, where do I go from there. I was on 15 mg 3 years ago, I guess let's cross that bridge when I come to it. I may be back for more advice!!
One of my replies kindly suggested a Synacthen test, do you think this should be a line of enquiry too?
I see from what Snazzy says it is a trigger point thing - never come across it in that way before. But I will believe someone who has fibro.
If you can get one done before raising the pred it would be great to have a synacthen test done - or at the very least a basal cortisol at 9am. But that would mean a blood test asap - is your GP up for anything that quick?
Ahh too late for the test then, I decided to go ahead and start on the 15mg, just couldn't face another night. But I doubt my surgery would have been able to get this done anytime soon.
Might be worth taking your GP's advice (agree with him on his view on Rheumies), and see if an increase does make any difference. You may have an answer then - the knee could just as easily be arthritis as Fibro.
Blood may be okay, but as we all know that doesn't mean PMR is in remission.
If you are in so much pain, a quick session of 15mg is surely worth it.
We are similar. I was diagnosed aged 54 with GCA in March 2017. I have had fibromyalgia on and off for years, diagnosed way before any of this and it was the correct diagnosis I’m sure. So, on this particular journey I’ve played, ‘is it or isn’t it’ many times. Not having PMR, my confusion has been between flare, withdrawal, new PMR and latterly, adrenal insufficiency. The knee thing, where it just hurts to have them together sounds like Fibro and there is a particular point just below the knee which, if pressed is disproportionately painful. At these various times, I’ve decided that apart from these Fibro trigger points, if it is a vague pain cloud (however intense) AND there is not alteration of actual function it is Fibro, for me. Low dose withdrawal triggered Fibro more than at higher doses and I found sleep was problematic in that I wasn’t sleeping deeply which made Fibro worse. When adrenal insufficiency started, I felt permanently like this, along with emotional frailty and deep fatigue; I couldn’t cope with anything. My lovely GP booked a Synacthen well ahead of time to check for possible adrenal insufficiency (Synacthen test) for when I got below 5mg and sure enough function was possible but not yet being reliably triggered. It is worth asking for one because they also check your early morning cortisol alongside it. It took months to feel better and I got there eventually but it wasn’t pretty . So, you may well have some PMR flare, Fibro and low adrenal function. Well done your GP in not unquestioningly following the numbers like the rats in the Pied Piper. Also, can anyone say you are in remission before you have been off Pred altogether for some time?
Anyway, 15mg will make any adrenal insufficiency better because you are again swamping the body with cortisol again and any inflammation should be dealt with. Fibro pain won’t be affected directly but then it does so anyway, when body stress is reduced. I’m not sure that answered your question, but there often isn’t a definitive answer.
Yes SnazzyD, I can tell we have been on a similar journey, and you also were diagnosed at a young age.
I do feel that there is a point on the inside of my knee that if pressed is very painful, but no pain below my knee.
I understand the 'is it or isn't it" game too, is it a flare or adrenal insufficiency or Fibromyalgia in my case. I have decided to up my steroids to 15 mg as my GP has suggested after the really helpful replies Ive received. Depending on the outcome I will discuss the Synacthen test with my GP, thank you for bringing this to my attention!
Huge thank you for taking the time to reply to me!
If you go back up to 15mg and then do a slow slide down, the test can’t be done until you are below 5mg, though some do it at 5mg. There might be a wait, so some pre-planning in this uncertain game, might be in order if your GP is up for it.
Are you familiar with the Fibro pain points? The knee one is found if you trace round the bottom of the knee cap towards the other knee ie central, then just round the corner, slip down an inch. It is the spot where if you put your knees together while lying on your side and let the top leg slip down slightly to a natural hollow. It’s there.
I agree with the others and your GP, up your dose to at least 15mg and see what the result is. If it doesn’t work then perhaps it is not PMR. If it does work it probably is PMR.
Having just been dealing with severe knee pain (triggered I think by change of activity pattern at the beginning of the pandemic) I thought I'd share a quick outline of what happened to me in case it helps you figure out exactly what's going on with you. I was down to nearly zero pred after five years. Running slightly downhill to catch a crosswalk light I felt a sharp pain in the side of my knee. I have not been quite right since then, which was late April. Owing to a series of unfortunate events (I'm a klutz, say no more) I ended up overusing this slightly sore knee and must have caused more serious damage. I am just now starting to see long-lasting swelling diminish, and the knives which were stabbing me far too often are infrequent now. I have needed the help of a physiotherapist to get this far. Not a rheumatologist or my GP. (Currently taking 2 mg pred. and will probably stay here for a while before attempting another flirtation with zero.)
HeronNS thank you for your response to my post. I can certainly relate to how you had your injury. As a super keen swimmer, and during the lockdown in the UK due to Coronavirus all pools were closed, and I thought I'd try running. This was not a good move and far too high impact for me and my PMR. Fortunately I didn't have an injury, but it certainly impacted on my pain. I am pleased to hear you are much improved now after treatment.
So yesterday in a desperation I decided to up my steroids to 15 mg. Today I am feeling so much better, but only time will tell. I have very mixed feeling about feeling so much better, but having increased to 15mg. As you will understand it has been a 4 year battle to get to 2 mg. But if this does turn out to be PMR then, at least in time this will go, but Fibromyalgia is something you have to live with.
All the best with your recovery and take it easy, you sound like myself and wont give in to this condition!
I'm with PMRpro on this one. I "gave in" right away. Once I had a diagnosis and the treatment was so very successful my next move was, indeed, to live with it, which in my case started with a very uneventful taper to about 2 mg. Since arriving there, perhaps 15 months into the adventure, it has been less straightforward but I don't think I have ever fought the disease although my feelings towards pred remain ambivalent. Some time ago I wrote an account about that ambivalence which you may find amusing: healthunlocked.com/pmrgcauk...
Yes, I agree HeronNS, initially it was a hard to accept I had to take this medication that could have unpleasant side effects on my body. I've always worked very hard to source and eat good food, exercise regularly and generally try and live a healthy lifestyle. I had to work on accepting that it was a quality of life thing, and I couldn't have any without this drug. It wasn't easy, but I did just relax and accept, but also made some other decisions to further improve my health choices. So 4 years later, I can say I have just got on with it, but always when well enough, chipping away at the dose. Although I have to say it's been tough, on a week I planned to drop to 1mg, Iv'e had to increase to 15mg. Oh the PMR journey is a learning curve!
When I said I wouldn't give into this condition, I meant this in the context of sport. You mentioned you had taken up different activities during the pandemic. I have always been a very keen swimmer. During my PMR journey, most of the time I was swimming 2k three times a week, but just recently have been so unwell I'd be lucky if I could manage 30 lengths in a week. For me this has been so frustrating, so that's what I meant, i'm not giving up my pool time. Even if I have to roll over the side and splash about a bit!
I loved your story, thanks so much for sharing HeronNS
I can only imagine what it is like for an athletic person to be unable to properly enjoy their favourite sport. As I haven't done much besides walk that wasn't a problem for me - until I got my knee injuries during the pandemic. But the last few days I've turned the corner and don't feel like such a decrepit old croock any more. I can even go up and down stairs again without whimpering!
You don't have to be athletic for it to hurt! It would be the last descriptor I'd have applied to me but giving up skiing did hurt - if only for the lack of being out in the sun and fresh air. And no, going for a walk isn't the same!
It's all relative isn't it? I squirmed with embarrassment as a cousin asserted to the local guy doing ski hire that he was "an excellent skier". In the UK possibly - here compared to my neighbours who were practically born on skis, not so much ...
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I can even go up and down stairs again without whimpering!
PMR or is this fibromyalgia?
Fibromyalgia and PMR?
PMR or fibromyalgia?
Fibromyalgia or PMR
PMR or Fibromyalgia?
