Please excuse this unorganized post. I’ve had sacral pain for a few months now, and also neck, shoulder pain which seemed to worsen sporadically after reducing to 8. Bad when waking up, painful to bend from the waist, lie flat in bed.
My GP did X-rays and said the sacral joints had osteoarthritis, recommended pain patches. (Lidocaine, etc). Tylenol did not help much or the topical things either. Lately the pain has been worse in my shoulders and neck when I’m lying down. When standing or sitting and I turn my head from side to side, the pain is worst when turning it and looking down, it seems like my head is not being supported by my neck or something. Pain is interfering with sleep. A heating pad helps as long as I’m lying on it!
I tried upping my dose from 8 to 11, I’ve been on 11mg for 6 days now, and the pain is somewhat better but still there. Tends to get better as the day goes on. I’ve taken ibuprofen a few days which helps the sacral pain but the shoulders and neck not as much. Not sure if the pain is coming from the spine in the neck area or the neck muscles. I do have mild scoliosis
I last saw my rheumatologist in early June tight before she left the practice and I haven’t found another one.
I saw my GP last week who spent most of the visit going over a wellness form they do every year. I’ve only seen her a few times, she listens but when I mentioned the pain and I wondered if I was having a flare of PMR/GCA she said no because PMR is in the joints, not muscles?? She examined my shoulders, said the muscles were tight, and prescribed a muscle relaxer which I haven’t tried yet. Also Zoloft for depression. She Also didn’t seem concerned that my sed rate and CPR had gone higher.
Sed rate: 5/29: 25mm/hr. (0-25)
7/6: 36mm/hr
CPR: 4/27: 0.6mg/dL (<1.0mg/dL)
5/29: 2.9mg:L. (0-9 mg/L) this is a different scale?
7/6: 1.4 mg:d/L. Marked H high
I’m not sure how to proceed. I don’t want to stay on the higher dose if it’s not doing any good and it might be something else other than PMR. 8 is the lowest I’ve gotten in 2 1/2 years.
I thought I could just work with my GP as she’s willing to prescribe pred for me but not sure how experienced she is with PMR thinking it’s in the joints. Not sure if she’d go along with increasing pred. I had such trouble finding a good rheumy and then when I finally did find one who listened she left the practice, it’s so discouraging to think of starting that search again in the middle of a pandemic that’s getting worse by the minute in the US.
Should I have my GP check for other things? She will order physical therapy if I want it. I know my posture has gotten terrible.
I just don’t know what to do at this point. I have a lot of family stress which isn’t good either.
I appreciate any advice.
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Mstiles
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I am so sorry that you are struggling Mstiles. It must be so hard to get better when the stress you are under is so relentless. I am glad that you are being treated for the depression too. I know the feeling when a doctor makes a fundamental mistake about our conditions - joint pain!
Sorry that you lost a good Rheumatologist after all the trouble you had finding one. Under the circumstance I think your best bet is to work with your GP ( increasing her knowledge with your extensive knowledge). It seems to me that your PMR is still rumbling along and it has been joined by a flare up of arthritic pain. I think your GP should leave no stone unturned in getting to the crux of what is going on with you. It is good that you got to 8 mgs Pred and is understandable that you don’t want to take more if you don’t need it ( it does seem to ease most things a bit). Until times are more normal this is the best you can do. Also ensure that a tweak of your anti-depressant is not called for. Wishing you well! 💖 Jane.
If I were you I would try 13mg for a few days, as those rising blood tests could be suggesting this is a flare of PMR. And the pain you are getting is very typical of PMR.
The perceived wisdom re dealing with a flare is to add 5mg to the dose...ie 13mg....for a few days. 11mg helped a bit so 13mg might help more? If this works you could then go back to the last dose which worked. Was that 9 mg or 8.5mg?
Then, as SJ suggested it will be a matter of educating your GP.
Well the first thing I woud attempt to do is find another GP who talks more sense! Or teach her the truth!
Where on earth do they get this idea that PMR affects the joints? Other than some effect on the synovium (joint lining) it affects the soft tissues SURROUNDING the joints - the joints are stiff but because of the supporting structures limiting movement not the joint itself.
Looking at those numbers they are clearly showing a rising trend for inflammation - to me at least and she should be concerned. It is a typical finding when you have overshot the dose you need or if a flare in disease activity is starting up. It sounds as if you have myofascial pain syndrome making your back muscles tighten and that causes pain. It is not uncommon alongside PMR. it is caused by the same inflammatory substances but they are concentrated in knots of hardened muscle fibres and in the muscle fascia. But either it makes the PMR flare or it is an integral part of some people's PMR.
I think you have let it flare a lot and the MPS has also built up - so you need more pred, adding 5mg to the dose where the flare happened is standard and you haven't gone that far up. Even 1mg can make a big difference being enough and not. Under the circumstances I'd hope a GP would help out with pred provision - because that is where you have to start.
Thank you for that information about the fascia and joints. You’ve mentioned the myofascial pain syndrome before, I’ve not had that looked at by the right therapist yet.
I upped the pred to 13 today, how long do you think I should stay at this before coming back down?
I guess if it works I should feel better pretty quickly?
I dread the “educating my doctor” struggle again, another stress I don’t need!
Dear Mstiles, what you describe ("it seems like my head is not being supported by my neck" ) is how I described one of the most persistent symptoms of my PRM when I saw my osteopath before I was properly diagnosed. In fact, if I ever get any pain that is where it starts. I hope you get swift relief when you adjust your steroid dose.
So hard when you can’t get to see anyone that seems like they know what they are talking about. Do try that increase ( you may need to check with GP if you haven’t got enough pred for an increased dose of a week) Let us know how you get on.
Personally I would follow the advice offered by PMRpro Mstiles. The type of neck and shoulder pain you describe is a definite sign of a flare for me. I find it hard to even hold my head up in those situations.
Dear Mstiles - the lower back pain is very wearing - I have it right now. When in UK I went to an Osteo who massaged/micro-stretched all the muscles in that area, plus gave me some exercises, and it worked well and went away for a few weeks. This chimes with the spasm/tightening wisdom above. I can't do that now because I am worried about close contact till (at least) after the Vaxx. The wider worry is - if you/I are getting this pain is it a clear indication that the ongoing Pred dose is insufficient? Thanks. T
Not necessarily - it is a different component of PMR and can exist as myofascial pain syndrome even without PMR. Oral pred rarely deals with it effectively - as you have found targeted manual techniques work well but it often needs ongoing management. Steroid injections locally can achieve far longer-lasting results. I'm currently sitting with a hot water bottle over the worst points - left sacroiliac joint and mid-buttock
Thanks predderman. Yes I’m also staying away from docs until after the vax. I’m scheduled for Friday, thank god. The pain is worse in the morning and better after some stretches. Seems worse when stressed and not sleeping well. I’ve got mild scoliosis which might be a factor.
Misalignment etc. hopefully not a flare, I will be watchful. I think getting the vaccine will lift a lot of worry and stress and pain. That’s my hope.
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