Diagnosed with PMR Sept 2013. Started on 20 mg pred, and tapered down below 10 mg in first year. Since that time, I have had several flares, most were caused by serious life stressors. Each, in time, settled down, and I returned to slow tapering.
Recently I was tapered down to 3 mg pred, and feeling optimistic that my PMR was extinguishing! After 5 years! Yay! Feeling pretty good, depression lifted, pain Gone, fatigue gone. Generally I believed I was coming to the end of my journey.
Then, Spring came, and I got the gardening bug. Also, I got a new bed, which turned out to be very much harder than I anticipated... So, between sore shoulders from gardening, and the new bed...I think I stirred up a new flare!! Now, how can that be!
If PMR is finally remitting, can it be aggrevated into a flare, by muscle strain? Oh, and there were a few stressful events which came and went during the same time, oh, and some medical problems Too, and maybe pending surgery too....... well, you get the idea, its called Life.
Its been about 3 weeks since I bumped up to 10 mg pred, tapering to 7.5 and 5 over 14 days. Currently sitting at 5 mg., and working hard at getting better. Acupuncture and massage have helped with relaxation.
I notice I am still pretty sensitive to stress, which I expect is related to adrenal function still coming up to speed.
As part of coming to accept the likelihood of a flare, I reduced some obligations, and determined to be very careful with myself, to avoid aggravating what seems a delicate balance.
I think the purpose of this post is just to say how frustrating it is...to think I am near the end...only to find myself back where I was a year (or more).
Ok, end of rant.
Better luck to you all. Jerri
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Purplecrow
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It must be so frustrating. Perhaps you were a little bit too active. I am at 6mg and if I overdo things I know about it. Like you say stress is a real trigger - just the hormones and enzymes associated with increased stress whacks the muscles. Hope you can pick up again....everything in nature coming alive. Maybe we can all take a turn too! 🌻
You are not alone , I’m back the same as a year ago , disheartened .
Morning
I think as soon as we start to feel ‘better’ naturally we start to do more but gardening’s very heavy though satisfying work & a change of bed can be quite traumatic.
As you say ‘Life’ knocks us around & the old Adrenals are lazy boys that don’t want to shake themselves & get back to work!
It must have been hard to have thought you were almost there for it to show you PMR is the Boss!
I hope you do well on 5mg & start to feel better soon, I’m back at 10mg having had a week at 12.5mg as per discussion with GP
Sorry Jerri. There must have been a little inflammation that whipped back into life. I hope the previous signs mean that it is reaching the end. I know what you mean about being incredibly sensitive to stress. I need to hang a sign round my neck. I can’t even take a slightly irritable tone in someone’s voice. Have you ever had your Adrenal’s checked? Some of the deficiency symptoms are similar.
I know just how you feel ,l have a lot of spring cleaning to do but have so little energy.l am stuck on 5mg of pred., which only just keeps the PMR under control .l have attempted to start on the garden,but keep seeing so many other jobs that my husband used to do,although he usually left the gardening to me,he always cleaned out the guttering and washed all the PUVC,thank goodness l live in a bungalow !The only thing we can do is pace ourselves ,or hope we can find a good handy man if we live alone.Best wishes,Patricia x
My brother who has also has PMR ( he lives in Wales and I live in Tasmania) says the thing to remember with PMR is REST, REST & REST. What great advice!
Whenever I have a too busy day I am SO tired the next day. It is so tempting to want to get back to "normal life" and get all those things done.
We need to accept the things we cannot change as the Desiderata says.
I recommend you buy a topper. Cost just over £100 and worth every penny. Makes sleeping on my bed like sleeping on a firm marshmallow and really helps. best of luck.
I can identify with your story. Diagnosed June 2015, max dose Pred was 15mg, reduced down to 8 and back to 15 three times. Then able to DSNS down to 2.5mg recently. Think I’m on the last leg but every time I try to do more than the minimum the twinges and stiffness return. I can solve this with a few days boost of Pred to 5mg per day for a few days then reduction back to 2.5 over a week. My GP seems OK with this.
At present we are on board our new acquisition, a Dutch barge on the French canals in the Burgundy region. We are locked in the marina as lock access to canal is closed. So did a spring clean, big mistake! I don’t do cleaning at home, we have a cleaner. Paying for it now.....we never learn. Boat is great fun though.....can’t wait to cruise. At least weather has been great 23degrees C and sunny.
Hope you solve the bed problem. We had always bought firmest mattresses and a couple of years ago it occurred to me that I found the mattress far too hard and looked into best kind of pad to get to make it feel softer. In the end I didn't buy it but it seemed that sheepskin was best option. Very expensive to get to cover whole surface, but a smaller piece to cushion area to include shoulders and hips should be enough. Oddly enough I sort of got over that stage without needing the cushioning, but when we bought new mattress with our move I overrode hubby's desire to once more get one which felt like a lightly padded board and selected next softest to that. He hasn't complained, and I've been comfortable.
As can be seen, so many of us relate to this slow progress and the fact that even small stresses and what at the time seems a bit of normality can set us back. Can be sooo frustrating but we carry on and have to look,I think, for the positives amongst the many negatives. Xx
I also had a series of flare-ups on our spring trip and am now back to my January dose of 10mg, slowly trying to taper to 8mg by my one year anniversary of pmr...mid -June …
you mentioned acupuncture and so has my massage therapist...has anyone had a lessoning of stiffness/pain from pmr by acupuncture?
Acupuncture is widely accepted as part of pain management protocol. Even my pain specialist (Surgeon, neurologist) supports acupuncture and chinese massage as adjunct treatments to his steroid lumbar injections.
Also, he supports chiropractic intervention as another "palliative" approach.
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