Hi all. Please can you describe your PMR pain/aching? Is it different to other pain you've experienced? I've never experienced anything like this - it feels as if everything is draining downwards in my arms (and legs to a lesser extent) and the aching in my upper arms (always bilateral but may be in one of 3 different places) feels as if I'm carrying something very heavy. On bad days my shoulders feel as if I'm also carrying a heavy rucksack & on the worse days I also have piercing pain much lower down in my shoulder blades. However, I never feel stiff even when I've just woken up and I have burning hands and feet, sometimes almost pins and needles. Following advice from this excellent forum (thank you!), I have been tapering from 15mg Pred by 1/2 mg per fortnight since April. I saw eminent rheumatologist end of June (when I was on 12.5mg) who was thorough with physical examination (full mobility all joints) & referred me for chest & hand x-rays, blood & nerve function tests. In follow-up on Friday all the above were normal so he thinks I may not have PMR & that it could perhaps be fibromyalgia. Any thoughts would be welcome. Thank you.
WHAT IS YOUR PMR PAIN LIKE?: Hi all. Please can you... - PMRGCAuk
WHAT IS YOUR PMR PAIN LIKE?
"In follow-up on Friday all the above were normal so he thinks I may not have PMR & that it could perhaps be fibromyalgia"
Not sure I'd expect any of them to be abnormal in PMR. I wonder what he expected to find? In an exam I had full mobility of all joints but I couldn't move them easily myself - I could do Pilates and yoga given time though.
Did your pain originally improve with 15mg pred? If not - why did they not try more?
Thank you. I think he thought that the burning hands & feet plus lack of stiffness might mean it was an inflammatory arthritis rather than PMR but now no evidence of this. In answer to Piglette - 15mg of Pred reduced my symptoms by up to 75% mostly and I was on this dose for 4 months however I was unable to sleep without zopiclone so, with the additional risk of increased covid morbidity on that dose, my GP encouraged me to try very slow reduction - I'm now on 10mg.
Does my description of this particular pain resonate with anyone?
If 15mg pred reduced your pain by about 75% then whatever it is - it is NOT fibromyalgia. Fibro isn't an inflammatory disorder, it is a fault in pain perception, and it doesn't respond to pred. Lack of stiffness IS unusual - but the stiffness in PMR doesn't always resemble what they think it should.
Wonder how long this fear of pred because of Covid will last - now they have established it is a key defence medication! Is the pain relief maintained on 10mg? If not it is probably because you would have been better started at 20mg but the dose then reduced after a month or so.
We recently had a sore throat. Mine disappeared in 24 hrs, hubby's went on to a cold, sneezing and quite chesty cough. He ignored it as felt fine and never gives way to anything. Hook honey and lemon (and I secretly put dissolvable paracetamol in too... grounds for divorce) and he is fine after 10 days. But I'm convinced pred is protecting me as not one cold or infection other than the odd sore throat for the last 6 years. Used to be prone to bad chest infections, antibiotics etc. Not complaining one bit. Hopefully won't get covid in spite of hubby out and about thinking it's all a load of rubbish and carrying on as usual. Masks in shops, no masks in pubs (diddicult). Self isolation travelling from Spain, but not for rest of household etc etc. No continuity with regs.
Burning hands and feet make me think of inflammatory arthritis. Those were my initial symptoms, many years ago, and the reason I first went to the doctor. The aching is also a symptom, but then, other diseases have that as a symptom. In the early days of inflammatory arthritis, I was not stiff at all and wondered why specialists would always ask me how long it took me to get going in the morning. I know now! Pred would certainly help the arthritis symptoms, but if indeed that is what you have, then a proper disease modifying drug should be prescribed for you to hit the disease hard and send it into remission and so give you a fairly pain-free, active life.
If you are taking enough pred you should not have a lot of pain if you have PMR. Either you are on too low a dose or your rheumie is right.
My pmr pain was like nothing I have experienced. Legs felt like logs and it felt like my muscles were stuck together with heavy duty cloth plasters and I had to rip them apart to move. Awful burning sensation around pelvic bones, felt like I had a dragon inside gnawing at my bones. Pred gave 80% relief within about a week and - cross fingers - have never felt so bad since.
I can concur with Arflane97G that the pain was nothing like I had ever experienced before. I had a lot of bad aches and doc and I both thought CTS might be making itself known, but most of it I put down to my OA being grumpy. I then got hit by what was a PMR flare when, it felt like, every single joint in my body seized up and I was in total agony. Couldn't move arms, legs, anything. Ended up in hospital for the night and the Pred had me, in real terms, out of pain in a few days.
Mine started with what I thought was sciatica. Then it moved to a hip. Then suddenly one night the pain....felt like a girdle of fire. An intense burning pain that didn't stop. That sent me to the doc...I was in France at the time, living in the middle of nowhere but this doc already had 2 patients with PMR and diagnosed me immediately.
I think for all of us, the pain is different. Mine is enormous stiffness and it has been for years even before I was diagnosed with PMR three and a half years ago. It is also the feeling that I have just done a huge workout at the gym (which I never do!)
Mostly I call mine a deep aching..pre pred..heavy as lead legs walking or stairs agony....then not able to bend down properly to pick anything up.could not dress myself properly and Dont go there with the on and off the toilet!
Not to mentions your arms not being long enough when finished on the loo!!!!!
Oh my goodness!!! I struggle with that too when at worst!! First getting down onto the loo and then your arms feeling like they shrunk and really difficult to do what is required because it’s so painful!! This forum is amazing, I am reading up on all sorts and coming across others who suffer the same symptoms...
And being unable to reach up to take a mug out of the wall cupboard, and bras and socks being complete no-go areas, and nothing helping (and believe me, the GP tried everything including codeine, Naproxen, Meloxicam, etc.). And no driving - I couldn't turn my head to see past the "blind spots". If I had been living alone I would have called an ambulance (or starved to death). Thank goodness for a helpful OH.
Might have been a better option - the ambo not the starving to death ...
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