How do I prevent all night pain? I wake up every hour and a half in terrible pain.
All night pain: How do I prevent all night pain? I... - PMRGCAuk
All night pain
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Maggieart
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24 Replies
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Hello, maggieshively. I’m sorry to hear you are in so much pain. The reason may very well be that you aren’t taking enough prednisolone to manage the inflammation in your body. There is nothing in your bio to tell us anything about you that will help us to help you. To start with, when were you diagnosed with PMR, what dose of prednisolone was prescribed and what are you currently taking.
I was diagnosed in 2020. I started with 60 mg of pred and now am down to 4.5 for about a year.
Could be a flare or adrenal issues. Take a look at DorsetLady’s post found in FAQs: healthunlocked.com/pmrgcauk...
Have you been overdoing things at this busy time of year?
Wondering why your starting dose was 60mg- do you have Giant Cell Arteritis?
I am so touched by the many replies. I will fill out my profile more fully. I have PMR, not GCA (not that I know of). My vision does not seem affected. I am just going through a phase of pain all night and terrible nausea in the morning. I will see my rheumatologist in January.
I don’t know if this is what you meant, but vision being affected or not doesn’t rule GCA in or out. GCA can be in other large vessels or head vessels that don’t supply the eye.
Oh. I thought it was head/temple pain and eyesight. What else is used to diagnose GCA?
This link is quite easy to read -
Good to know you have a rheumatology appointment next month but if in the meantime you can get to see your GP or speak to a pharmacist you may get some help there. Another suggestion I’d like to make- it’s what I would do - is to ring your consultant’s secretary and ask for a call from the clinical nurse specialist so that you can describe what’s going on. Pain is SO debilitating and nausea added in must really be dragging you down.
You’ve been very patient in answering all our questions 👏👏 but as you’ve gathered, more information in your bio will be useful. DorsetLady has written a very helpful post (to be found in ‘Pinned Posts’) suggesting the kind of info you might include when you feel up to it. You don’t have to do it all in one go - no one will be marking your homework 🙂.
Apologies- here is the link to the above post:
DorsetLadyPMRGCAuk volunteer
Sorry to hear that… but it’s a bit difficult to say without a bit more information.
Is the pain the same as pre diagnosis? If so then as suggested it may be a flare…
The pain is not the shooting pain from pre-diagnosis. It is just an intense ache. Last night, after posting, I read about adjustable beds and sleeping with the head raised. I have one and I had forgotten that that had helped in the past. It helped last night. I so hesitate to increase my pred dosage (I take it in the mornings).
Okay well see how that goes - it is natural to always think it's PMR or GCA - it it isn't always...
Well, the prednisone definitely helped immediately and, if I miss a dose, I get a lot of pain. I'm sure there are other things going on too. OTCs help, but I hate to rely on anything too regularly. Thank you for your willingness to share.
Well you need to rely on Pred - at the moment anyway.. but a different position in bed, different pillows may all help. Heat also helps if muscular - before you go to bed, first thing in morning - whenever you need it..
It’s horrible not being able to sleep. Where is the pain and what sort of pain is it? When does it go after the night and does it go of its own accord or after Pred?
PMRproAmbassador
We need to know far more - is your diagnosis GCA or PMR?
Some doctors use such high doses even if the symptoms are only of PMR - and that may not have been the correct diagnosis of the underlying cause. You may well have reduced the dose too far to manage PMR that can be part of GCA. But we don;t know enough.
The high dosage was only for a short while in 2020. I have been under 7 for awhile and at 4.5 for a year. I was hoping to start taper again in January.
That isn't the point - was it for a diagnosis of GCA or PMR? That is what we need to know. It may simply be the antiinflammatory effect of the pred isn't lasting 24 hours and you either need a bit more or shuffle the doses a bit. But you are not aiming relentlessly for zero - you are looking for the lowest effective dose. That is a different matter.
PMR
You aren't tapering relentlessly to zero - you are looking for the lowest effective dose, And I suspect you may have tapered below that dose. However - there are other autoimmune disorders that present looking just like PMR but aren't. One is ankylosing spondylitis and that can cause night time back pain, earlier in the night than is typical for PMR which is about 4-4,30am and it improves once you get up and are moving about. These types of inflammatory arthritis can also involve other parts of the body. I think you need a detailed discussion with your doctor.
Is your pain PMR type pain or is it something else? Where is the pain?
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