Morning all I can't believe it but I am sat here smiling over a bowl of porridge
It is the first time for I don't know how long that I have been able to make my breckfast and a cupa without at times ending up crying with pains
I had pains on doing it but I could cope with them thinking what it would be like to do these things with no pain I know this isint going to happen I upped my steroids from 8mg to 10 mg have sent a letter to doc asking her views as I'm sure my spinal stenosis isint the problem causing my biggest problem at moment Since doing this the back pains are showing themselves so I do believe I know the different in the pains Has anyone had similar problems and what do I do if one of the docs seem to say it's not pmr when the renal when picked it up apologised for not picking it up earlier that was a year and a half ago
Great when I had higher dose in beginning then when got told to lower it I did and no one has mentioned it again so you can imagine pain I have been in so please keep fingers crossed for me I don't get told to lower it again
Sorry for the rant
Porridge was good lol
Written by
Rusty8
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Rusty, I feel I can almost see you smiling over that bowl of porridge! It's amazing how one little positive sign of light on the horizon can boost our morale. Well done!
I do so understand the complications of having something like spinal stenosis thrown into the mix alongside PMR. For me it was spondylolisthesis and it could at times be so difficult to know which pain was due to which condition. However, somehow along the journey, I did find it easier to recognise which was which, for instance the sciatic pain on and off down one leg would rear its ugly head from time to time and, in my case, I knew this was spondylolishesis-related. I found that donning a simple support girdle for a couple of days at such times was very helpful. Some people get relief by using a TENS machine.
As for you being concerned about being told to lower your dose again, only you will know how and when to do that, simply by your symptoms at the time, especially if you don't have ESR and CRP blood test markers to guide you together with those symptoms. Certainly, if increasing from 8 to 10mgs has made you feel more comfortable then that is the dose you need for a little longer yet....and so that you can keep smiling over that bowl of porridge!
It was good to read that others have been in the position of having a condition that made it difficult to spot which pain was due to PMR and which was due to the other. Especially as I don't haveESR or CRP markers. I don't mean I'm glad it happens to others just that it's given me confidence to sort out all the pain. My trouble was an undiagnosed fractured sacrum. It meant I walked my dog for a couple of hours each day in real pain and cursing the PMR. It was all a mess with me being on 40mg of Predict a day with little relief. What a mess. I'm 72 and have always been active. Felt as though my active life had gon for good. Think I am getting back to better health now. Thank you for all your help all of you.
Sorry forgot to say it was 9months between the fall that caused my injury and when I had an MRI scan that showed it. By then I'd hurt my back and could not walk without elbow crutches.
There is a lady on another forum who developed pelvic fractures about the same time as the PMR - the original doctors made a right mess of deciding what it was, blaming pred. She now has a sensible doctor who says it couldn't be the pred, she hadn't been on it long enough.
The point is - if you have one diagnosis, many doctors will put everything down to that. But if a high dose of pred isn't dealing with your pain - the chances are it ISN'T PMR. The trouble is - you need a doctor who will accept that and turn detective.
My new doctor is much more thoughtful and has helped a great deal. My excellent physiotherapist recognised it was the broken sacrum giving me the pain in my back and legs. That is well on the way to healing now. I'm now on 15mg of Pred. a day and the stiffness and pain is much less. Even my shoulder is easier and that has been very painful. I can mostly dress myself now and get in and out of bed myself. The effects of PMR are difficult to understand unless you've suffered from it yourself so sharing it with other sufferers is enormously helpful. So glad I started to use this site.
Tell your doctor quite firmly what has happened - and enjoy the relief. I still remember that first day originally when suddenly it didn't hurt to exist!
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