Dentist suggested SSRI (antidepressants) to relax jaw muscles and just wondered if this is something anyone has tried (or any other type of muscle relaxant) perhaps in conjunction with painkillers.
These steroids are slowing killing me - all that has happened is life debilitating symptoms are being replaced by life debilitating side effects and I've only been on them 3 months. Tried NSAID and they did absolutely nothing for the stiffness. On the advice of the NHS and private rheumatologists I am still lowering dose despite rising inflammation and will be on 30mg tomorrow.
This hot weather is not helping but I am so utterly exhausted - go to sleep as soon as head hits pillow, getting 6+ undisturbed sleep and yet nodding off in the day. Just half an hour of light activity and you can hear it in my voice and my limbs feel like jelly. My bladder is completely out of control - urgency and frequency 1/2 - 1 hour in the middle of the day in particular. I look like a cross between a buffalo and the Michelin man with horrendous water retention and hair. I've also become sweaty and suffer with acne. Optician says vision is fine but things are blurred a lot of the time. Brain fog was a problem previously but steroids have taken it to a whole other level and work is near impossible. At least I can still laugh about the time I nearly left the house without trowers on, smeared toothpaste instead of cream on my face and the other scary incidents are now consigned to memory loss !
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Body_bonkers
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NSAIDs and painkillers in general are pretty rubbish at helping PMR, it is steroids that work. NSAIDs are not normally recommended to be used with steroids. 30mg is a very high dose, it is normally 15mg starting dose and really 25mg tops. It does look like whoever you have as your medical practitioner is not managing your illness very well. Are you seeing a rheumatologist?
Agree. I understand that some people have a load more problems than I have had but the state Body-bonkers is in sounds to me like totally mismanaged disease, as though everything's out of control and nobody is making any effort to get it under control.
To which I'm adding I worked in Cancer Services for 20 years. I was in and out of the clinics doing stuff like 'negotiating' urgent MRIs, in and out of Day Care. Apart from the obvious effects of chemo, patients looked OK, because they were being properly looked after. QOL is also paramount.
Spot on Mayadill - my whole experience lacks any patient care and it is so distressing when the medical establishment don’t seem to know what they doing
Do you live alone? just wondering what the care situation is in your area, practical stuff, when the bladder goes crazy, it's necessary to clean up which is not what you feel like doing, when you feel terrible everything is toil, and not what you feel like doing
Thankfully still able to look after myself but local facilities are not fit for purpose. People in far far worse condition have to rely on family/neighbours/friends or end up bed blocking hospital
Great! Care has its downsides, however wonderful the carer. Had it after I came out of hospital. If you haven't eaten/washed/dressed by the time they think you should have they get all worried! No sweat, guys, it doesn't mean I won't...
Tried NSAID before the steroids but unfortunately ‘management’ has been entirely left in the hands of the GP’s. They dropped dose too quickly and gradually increased to 50mg but never got back to the initial improvement. I saw a NHS rheumatologist couple of weeks ago (only because of GCA symptoms) and was told drop 2 x 10mg and see you in a month but here’s a telephone number in case weeks go by and you haven’t heard from me !
If you are on high dose steroids then it is arguable that you shouldn't be even attempting to work since they affect judgement and thought processing. You have a serious systemic illness - it isn't to be taken lightly. And if it is PMR/GCA, pred is the mainstay of treatment in the UK, nothing else works to suppress the inflammation except RoActemra which isn't easily available in the UK.
Thanks PMRPro - I know this won’t last (nothing good/bad does) but work is essential financially and keeps me sane. I have already made significant adjustments however and trying to find a balance
I'm so sorry you're experiencing these symptoms. I'm also off of work and on Prednisone, due mainly to brain fog and lack of patience with my customers. I have back issues in addition to PMR issues and find that I have to take Ibuprofen/Tylenol together to even touch the back pain (which manifests in muscle spasms from hips up to rib cage). I also sleep as soon as I hit the pillow. It's fatigue from fighting the pain ALL DAY and trying to stand (and now can't sit), for about 2 minutes at a time. I'm not sure what Rheumy will do next week, but hoping she actually DOES SOMETHING THIS TIME. Yes, I'm salty. No proper care and my body is taking the brunt of it.
Thanks Missus835 and hope things improve for you soon. I’m fortunate the steroids alone deal with most of the pain but less successful with regards stiffness
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Fatigue
Hooked on prescription painkillers
Any ideas? 
Why do I have more pain in the morning after taking my steroids
