What are your new areas of pain/stiffness you've experienced as you reduce?
Posted , 14 users are following.
A reply by Dan38665 on another post prompted me to ask this question
When tapering/ reducing your current dose of Prednisone, if you experience pain and stiffness, is it in the same areas as pre diagnosis? Is the pain symmetrical? What new areas of inflammation have you experienced as you reduce that are controlled by an increase in Prednisone?
For me, bursitis like pain in my right shoulder and left knee are new. Pre diagnosis, I had symmetrical pain in both shoulders radiating down my upper arms but, it did not feel like bursitis.
As for my left knee, this old injury ( that I believe triggered my journey with PMR) had a different pain upon reduction then prior to. It was visibly inflamed and stiff and painful
Both of these issues took about a month to subside. But were absolutely relieved after an increase in Pred.
My biggest complaint now that I'm steady on 11mg (since starting on 20mg In Feb)
is back of leg pain. It's more of a muscle ache really. Both legs from buttocks to thighs. Every morning and every evening.
For now, the rest of my pre diagnosis areas or shoulders, neck, groin, hips are all in check.
Let's compare!
0 likes, 27 replies
iellen32 danielle_65358
Posted
Stay healthy.
Take care🌸
faye______00403 danielle_65358
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and the day wears on. I've had a terrific bout of sciatica and wonder
if that isn't some of my problem. I went up a little in pred but no real
lessening of morning pain. Chiro told me one thing. Physical
Therapy guys had no idea, Primary doc (after MRI) said nothing too
bad on MRI shows normal wear for my age (79) sooooo I never know
what I'm treating on a daily basis. Everyday really is trick or treat
isn't it?
FlipDover_Aust danielle_65358
Posted
But now I get random pain/lumps in my muscles too - my Rheumy thinks this could be fibromyalgia and/or myofacial pain syndrome on top of the PMR, just for good measure. Lucky me.
I couldn't even put my socks on this morning and it's only 5* outside brrrr
LayneTX danielle_65358
Posted
yes, at first PMR was very aching neck after sleep, inside groin, hip flexors (front of thigh), I couldn't lift legs to get in car or put on clothing without pain for such a long time. Now that is gone. I couldn't bend over or lean over with my legs straight, or even squat (top of hamstrings, which I now think is bursa), that is much better, but sitting in my car over 30 minutes is very uncomfortable. So that acts like the butt bursa. So I don't travel much.
Mine still symmetrical, but right shoulder used to be worse, but now the left hurts more after Pred wears off.
Mornings were much better, but lately the pain lifting covers off in morning has been coming back as well as my tight hamstrings.
The elephant hump was actually painful to me, that subsided as hump went away, though sometimes the upper back is tender to touch.
In the evenings, my front hip flexors (near the crease of our upper thigh) gets so tender to the touch, when I palpate it with my fingers it helps, guess I'm getting blood flow in there. This is where standing up and walking around every 30 minutes is helpful.
I've wondered about other's experience regarding this aa well. Glad you are asking.
danielle_65358 LayneTX
Posted
Yes. I think it's interesting how this disease affects us. It seems to know where our weak spots are.
I sympathize with your leg pain. It's relentless.
I just wonder how much if it is PMR and how much of it is Pred withdrawal. Or worse even, the pains of aging!
I'm so glad we have a space to share and compare.
PMR is foreign to my family and friends. As it was to me a few months ago. Now...we're well acquainted of course!
karen28161 danielle_65358
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when I get up in a morning ,like other have said it hurts me to move the quilt off me to get out of bed ,then I have the penguin walk as I go to the bathroom and that lasts for about 1 hour ,as the morning goes I I do get better ,I have notice I am pretty much pain free all afternoon till after tea,when i finally sit down to relax the dreaded pains start to come back .......THE JOYS OF PMR .sending every one lots of pain free wishes xxx❤️
EileenH danielle_65358
Posted
However I DO get pain that is very similar to PMR symptoms that is most likely due to either myofascial pain syndrome or bursitis, usually trochanteric. In both cases I deal with them as a separate entity with Bowen therapy or massage sometimes or I ask the doctor for a local steroid shot for the bursitis.
They will also respond to an increase in oral pred - they are both inflammation - but you reduce the overall extra dose of pred by attacking them locally. Longterm, Pilates-type exercises to strengthen core muscles probably also helps a lot.
A lady on another forum who has had PMR twice and gone into remission twice as well has always said she thinkgs PMR picks our weak spots to make itself felt. The corollary to that of course it - does PMR create the weak spots? Who knows...
Have you considered myofascial pain syndrome or piriformis syndrome for the cause of the back of leg pain?
danielle_65358 EileenH
Posted
Periods of inactivity bring it on as well. It's the same weakness, pain as in the beginning. Getting up from sitting or out of my car is challenging. Stairs are the worst!
Eileen, after googling both conditions, they don't seem to fit but, of course I'll mention them at my next Appt. thx
I need to find balance and I am grateful that it's not dibilitating just nagging. For now, I'll just live with it.
Thanks all for your responses!
Tastyron danielle_65358
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LayneTX Tastyron
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But my left is the loudest.
Anhaga danielle_65358
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LayneTX Anhaga
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Sometimes I wonder if stressing over what foods to eat that I can enjoy that are "listed" as bad for inflammation...but I'll eat them anyway hoping for some enjoyment, then wonder if it will cause a flare. Geez.
I feel now more than before my thinking or state of mind is really felt, though I don't really notice until I say to my self, "relaxxxxx, let go...." Then I feel different, and the tension goes away.
Are many or any of you more sensitive today psychologically? I know the Pred really does that to us, I'm down to 4 mg but still... Or...its just my personality which I'm desperately trying to change.
Anhaga LayneTX
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danielle_65358 LayneTX
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Stress=pain. Pain=stress. I'm guessing it's a bit of both.
I think the uncertainty of this condition can be very stressful. Each day brings new challenges that we must cope with physically, mentally, spiritually and emotionally.
Couple all that with the everyday stresses of life and everyone else's needs. It can be overwhelming for sure. I'm so guilty of stressing over everything. I'm so angry at times! Especially since it seems this disease is controlling us and not the other way around. No matter how well we try to manage it with rest, diet, exercise and proper Pred dosage, it still betrays us. How dare it?!
All we can do is try to put our best foot forward. We can try to focus on the joys in life. Be grateful. Take it day by day. After all, like everything else that causes us to stress, this too shall pass.
nick67069 danielle_65358
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When I tapered to 9mg, for the first time some of the nagging pain in both shoulders came back. Also, during the first 2 weeks of taper, I felt increased anxiety and short temper ( more then usual ). I was using modified slow method. 3-1 2-1 etc. By the end of the transition, most, but not all PMR symptoms were gone.
Reduction to 8mg was even harder. This time besides shoulders, my quads and hamstrings were tight. I was still exercising as usual, but was careful not to put too much stress ( going very slow, doing stretching, etc). I would focus on muscle that were hurting and tried to recover them.
When I reduced from 8 to 7.5mg, besides usual suspects ( shoulders and quads/hamstrings), my wrist and thumb were hurting, and stiff every morning. It required special attention.
I am currently in the middle of 7.5-->7mg taper and have exactly the same symptoms.
Oregonjohn-UK nick67069
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Regards, John
EileenH nick67069
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Anhaga nick67069
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nick67069 Anhaga
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Anhaga nick67069
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nick67069 Anhaga
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EileenH nick67069
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nick67069 EileenH
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Thanks...
Anhaga nick67069
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