Confused as to what is going on...
Posted , 8 users are following.
I remain confused as to what is going on with me. I know that many of my PMR symptoms are well controlled by the prednisone, but the stiffness and pain I have on each side of my spine from below my waist to my shoulder blades puzzles me. At first I thought it was something other than PMR, then thought it was PMR. Now wonder if it truly could be a flare of PMR. Am on 15 mg of pred and afraid to go down. My doc has given me 1 mg tablets so I can reduce by .5 mg to 1 mg when I decide to. Even just sitting typing this post has my back starting to stiffen and throb. Don't see my doc until July. Yesterday just picking spent blossums off my petunias had my back aching. Can't seem to do much at all involving any bending. Sometimes just walking makes my back muscles, ribcage muscles stomach and abs tighten and get stiff and I get out of breath easily. Yikes!!
4 likes, 17 replies
ptolemy linda82701_USA
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linda82701_USA ptolemy
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tina-uk_cwall linda82701_USA
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linda82701_USA tina-uk_cwall
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tina-uk_cwall linda82701_USA
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12.5 mg for 6 weeks
10 mgs for anything up to a year (I was on this dose for 6 months)
from then on its following Eileen's go slow and almost stop regime.
however, many sufferers cannot take the tapering regime pre Eileen's go slow and almost stop. Therefore only reduce by 1mg every 4-6 weeks. Personally I stay on each dose for 6 weeks and now I'm on Eileen's go slow and almost stop regime only ever reduce by .5 and not 1 mg. I achieve that by cutting my 5mg tablet down the centre ridge line, and obviously make whatever dose I'm on by juggling the 5,1, and .5 tablets to make my dose.
many patients start on 20mgs but you still apply the same principles.
20, then 17.5, then 15, but as I said you may have to reduce by 1mg every 4-6 weeks as it looks as if your body doesn't like the big 2.5 drops.
personally I would up my dose back up to dose were you felt the least amount of pain and stay there for 6 weeks then reduce in line with the 1mgs drop. I think you haven't got all the inflamation under control and you are forcing your reductions. Remember the dose of prednisolone has to be large enough to cover and keep under control the level of inflamation you have in your body, because you most certainly cannot take a lower dose and think that the inflamation will fit into the lower dose of preds, it just doesn't work like that.
If your GP attempts to rush or force your recovery you will simply experience unnecessary pain, pain that could possibly be under control at a higher dose, and or a flare which means that because you haven't been taking enough preds to keep the inflamation under control it simply flares up, because it can, and trying to get them under control takes even longer and in the end, you'll be on a higher dose for longer. All the best, regards, christina
linda82701_USA tina-uk_cwall
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jean39702 linda82701_USA
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Due to a strike, our local pool has been closed for 3 months and it's not looking hopeful that it will re-open any time soon. Within a couple of weeks of not going to the pool my back began giving me grief. The angle of packing a suitcase, making a bed, dead-heading blossoms garden plants, etc. is the most aggravating. I also feel that my shoulder and arm muscles have weakened and are less tolerent of exercise. I have had some relief with Bowen therapy. I expect things would also improve if I did some easy back stretching and strengthening exercises.
It's so frustrating trying to decide the best way to react to the variety and intensity of aches and pains that pop up off and on, sometimes for a few days or longer. :-( I don't know how many time I've asked muyself "Is this a flare? Should I increase?" ! So far I haven't increased more than .5 mg a couple of times for a day or two.
linda82701_USA jean39702
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pat38625 linda82701_USA
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pat73046 linda82701_USA
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linda82701_USA pat73046
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Thanks for your responses. No doctor or nurse told me anything about PMR let alone that I should take it easy. The only things I know about PMR I have learned on this forum from all of you!
EileenH linda82701_USA
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However - there are a couple of other things that are often found along with PMR which may also respond to higher doses of pred and tha tis the primary reason for using just this moderate dose of pred - use very high doses and all sorts of things may be masked.
One that would fit with your description is something called myofascial pain syndrome (MPS) - I've written about it all over the place on all 3 forums. Where PMR is caused by inflammatory substances called cytokines being released into the body in the early morning and getting all over the body, MPS is concentrated spots of the same substances which often form hard knots in the muscles, especially at trigger points alongside the spine: in the shoulders just between where your bra strap sits and your neck, alongside the spine about level with the ribs and in the lower back where your dimples are on your butt! These inflamed areas can irritate muscles and nerves, leading to referred pain. Your back muscles often respond by going into spasm to protect your spine from damage - and it is VERY painful! It is often aggravated by leaning forward - an action that puts enormous strain onto your back muscles, as does the activities of sweeping or using a vacuum cleaner. Walking also aggravates it.
When I first had PMR with no pred, I used an osteopath every so often which helped - but the best help I got was with Bowen therapy. Quite a few ladies on the forums have tried it (at my recommendation) and it has helped them a lot.
When I had a really bad episode here in Italy 3 years ago I ended up in hospital and they used pred/painkillers/diazepam in infusions and it worked fantastically, just one lot made a massive difference. However I reacted badly to the diazepam and I was handed over for slower manual therapies. I had cortisone injections into the hard back muscles and the pain specilaist also did manual mobilisation of the trigger points - slower but also effective. It took a few months but it's almost all gone. What's left I manage with Bowen therapy.
Do consider trying it - it looks wierd but it is very effective for this sort of thing. I call it a "PMR add-on" - it is quite common.
linda82701_USA EileenH
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EileenH linda82701_USA
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Lodger on this forum was stuck in bed for about 6 weeks - could just make it to the bathroom next door using a zimmer frame. A friend managed to get her down the stairs and to her car and drove her to my therapist, Joanne Hewitt, where she got to the room with the friend on one side and a walking stick in the other hand. After a single 1 hour session she walked back to the car on her own and had to go back to fetch the walking stick she had forgotten! If you google "Joanne Hewitt Bowen" you will get a link to her website which is a bit less esoteric than Mosher's ;-) but his videos are good.
I recommended it to one gentleman and he said he thought it looked a load of hooey - but he had happily accepted the concept of using acupuncture! Didn't see the logic myself! There is to be a trial in the NE of England of using Bowen therapy for patients with back pain that hasn't responded to conventional therapies - in the same way acupuncture is offered.
linda82701_USA EileenH
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EileenH linda82701_USA
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Look for American Bowen Academy Bowenwork - with a search function by zipcode.
linda82701_USA EileenH
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