I am a new comer to this illness so very much feeling my way . Symptoms started approx 3 months ago waking up with chronic stiffness in hips, shoulders, neck , you all know the story ! Unable to move, get out of bed etc etc . I have had this more or less consistently until 3 days ago when I felt like I had flu, much more general aching and exhaustion but strangely less pain and stiffness than before in hips, neck, shoulders, knees, upper arms . I took to my bed exhausted but am now up again and although I still have PMR symptoms they don’t seem so bad . Also I haven’t started on Prednisone yet as I am waiting to see the Rheumatologist in a couple of weeks so only taking NSAIDS. However my doctor was pretty sure it was PMR and blood tests showed inflammation . Can PMR come and go ? Will symptoms come back as before ? Any advise so much appreciated . Thank you all , amazing group !
Can symptoms of PMR come and go ? : I am a new... - PMRGCAuk
Can symptoms of PMR come and go ?
It isn't uncommon to hear people say that when they were ill with something else the PMR seems to be less obvious. Probably because the immune system is occupied fighting off the cold/flu and forgets to play PMR!
Yes that’s just what I was wondering, it’s certainly what it feels like . Thanks for speedy useful answer,very reassuring 😊
Also, bed rest can be really healing sometimes. We all overdo it.
Yes you are right ,hard to do sometimes but I can see so necessary for this illness
My gosh, I don’t know how you managed with no pred. I could hardly get out if bed and fid not bother to get dressed in the end I was in such pain. NSAIDs had no effect in helping the pain at all.
You case sounds really bad . It does take me a long time to get up and moving and sleeping in bed is often horrible , tossing and turning with pressure on shoulders, hips, neck etc . I did wonder if I could sleep standing up like my horse does as lying is so painful !!I definitely start to get better though once I start moving and have tried walking in the morning and also gentle yoga . I am also not doing very much at the moment , just resting . I shall be so interested to see how things change on Prednisone, but also nervous to start taking it . How long have you been on it and what do you feel are the worst side effects ?
What you are decribing is typical of another inflammatory disorder - back pain for more of the night and it is rapidly relieved by movement on getting moving in the morning. It too can present looking just like PMR so it might be an idea to make some notes of when and where the nighttime pain occurs and how quickly it improves with movement.
Hi, it’s not just back pain it’s shoulders neck, can hardly move it , hips knees and upper arm pain . The pain and stiffness continues during the day but eases with movement . Also had massive fatigue . What other inflammatory disorder were you thinking of ?
Ankylosing spondylitis - I know a couple of people whose original diagnosis was PMR but it turned out to be AS. It isn't always immediately apparent but the pain tends to be earlier in the night while PMR pain is worst after about 4-5am and eases once you get moving while PMR stiffness and pain can take much longer and movement doesn't really help a lot.
When I was given steroids, within 24 hours things had totally changed and I felt alive again, a real miracle.
Yes , it seems to be the best solution and I am so ready to give them a go now as am feeling like a bag of pain right now . It is so hard as there is so much negative information about steroids you end up feeling afraid of them which is crazy if they help you to feel alive ! I’m glad to hear you are doing well on them 😊
There are a lot worse drugs around than steroids. They are a wonder drug, but sadly the side effects put people off a bit.
What are the worst side effects for you and the most likely and to watch out for on 15 mg ?
Weight gain first and foremost for most people. Don't wait - take action from the start and it may not be a problem. Cutting carbs, especially processed carbs and added sugar, is proven by many to work.
I had hot sweats which were dreadful. Dry, fuzzy, uncontrollable hair, fluid retention, gritty eyes, purpura, starving hungry all the time, sensitive teeth, insomnia, bruising. I did not actually put on weight though.
Urggggg sounds horrible !! How long for and did it change at all ?
Once I got below 10mg they improved no end. I do seem to have problems with anything medical though. I went yo have a hip replacement a two or three day hospital stay. I was in hospital nine days with visits from a plastic surgeon and a cardiologist, two pints of blood and a dislocation of my new hip. I was on drips and they kept waking me up in the middle of the night to flash lights in my eyes as I had fainted three times. It was a nightmare nine days, but the hip was fine.
Thank you for clear and useful info
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