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What are your new areas of pain/stiffness you've experienced as you reduce?

Posted , 14 users are following.

danielle_65358
danielle_65358

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

27 Replies

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  • iellen32
    iellen32 danielle_65358

    Posted

    That's it, Danielle, that is where the problem stays when we reduce. The flare ups happen then to do the tapering OMG here is where exactly the problem stays until we have the wisdom do do it right!

    Stay healthy.

    Take care🌸

  • faye______00403
    faye______00403 danielle_65358

    Posted

    My mornings consist pain in legs, butt,    Gets better after pred dose

    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
    FlipDover_Aust danielle_65358

    Posted

    Mine is pretty much the same - I am in pain and I'm soooo stiff in my hips, back and shoulders.

    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
    LayneTX danielle_65358

    Posted

    Interesting observation Danielle.

    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
      danielle_65358 LayneTX

      Posted

      Layne

      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! smile smile

  • karen28161
    karen28161 danielle_65358

    Posted

    Hi Danielle ,as I reduce my PRD I have terrible bouts of siatica ,legs ache ,and all of a sudden my arms really ache ,

    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
    EileenH danielle_65358

    Posted

    I rarely have returning pain due to a reduction - because I do it so slowly using the "Dead slow and nearly stop" approach. If I have returning pain it is usually because of a flare due to increasing disease activity (that's happened 3 times over the last 7 years, i don't count the ones before, I wasn't on pred). 

    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
      danielle_65358 EileenH

      Posted

      I believe my leg pain, which goes from buttocks to calves, is from doing too much. I'm on my feet most of the day as my job requires it. However, the pain is in the mornings and as I sit to rest in the evenings. Lessens throughout the day. It had disappeared with initial dosing.

      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
      Tastyron danielle_65358

      Posted

      I get the butt down to backs of knees pain when I'm in the car for half hour or more. Unfortunately, my Rheumy and Bowens practitioner are both an hours drive there and an hour home again. On the way home I tend to stop half way at the beach for a walk. Helps but I'm rubbish for the rest of the day.
    • LayneTX
      LayneTX Tastyron

      Posted

      Yep Tastyron, me too. My Bowen is also 2 hours away and she said stop half way and walk, that does help a lot.  Also I've put a cushion (smaller lumbar pillow) under my right buttocks to lift the other side so as to not put pressure on that cheek.  It's helps...till the right one starts to complain. wink 

      But my left is the loudest. 

       

  • Anhaga
    Anhaga danielle_65358

    Posted

    I note increased morning stiffness is usually a result of stress rather than extra exercise, but a few times I've overdone it - like when the garden became workable and I was using different muscles.  The further I get into this journey the more I understand that for me at any rate psychological and emotional stress are the major factors.  
    • LayneTX
      LayneTX Anhaga

      Posted

      Funny, I can't figure out sometimes which came first...pain makes me feel stressed, or was I stressed which caused more pain or atleast more over all ugly feelings (for lack of better word).

      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. smile 

    • Anhaga
      Anhaga LayneTX

      Posted

      One evening I was going to post on either this or the other forum about the stressful events in the previous few years that I'd experienced.  By the time I got to sixteen, which didn't even count what had happened that day (wasps in the attic preventing a roof repair and the resulting costs for an exterminator, etc) I thought, enough is enough, deleted the list and have tried not to think about any of the things any more.  Doubt if I could even remember many of them now.  Sometimes I turn off the radio, I refuse to watch tv news, stop my husband if he starts to go on about something we can't do anything about ("developers" tearing down yet another historic building in our city to make way for "progress" for example) and generally try to stay in stress avoidance mode.  If I haven't been able to solve the problems of the world by now, it isn't going to happen and all I can really do is try to solve the riddle of my own existence.... 
    • danielle_65358
      danielle_65358 LayneTX

      Posted

      Layne

      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
    nick67069 danielle_65358

    Posted

    In two weeks after being put on pred  (15mg) all the pain and stiffness was gone.  I went to 12.5 and then 10mg with no problems or pain.  Over that period, I was steadily increasing exercise ( mountain biking, swimming and walking) and for the most part got back to decent shape for my age.

    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 usualconfused  ). 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
      Oregonjohn-UK nick67069

      Posted

      Nick, I know we are all different BUT - It might help to stop at your current dose for a few weeks to let things settle down?  I tried pushing my reduction down and found different aches and pains appearing so slowed down even more. I started at 30 mg nearly two years ago and am currently sat at 2.5 mg, and have been for a couple of months, as I 'felt' I had been reducing, even using the DSNS method, a little too quickly.   Read what you body is saying?I would rather be at this low dose for a longer period than relentlessly trying to get to zero and then have a flare and have to start all over again - it a bit like the Tortoise and the Hare?smile

      Regards, John

    • EileenH
      EileenH nick67069

      Posted

      I agree with John - that you are having increasing problems as reducing does suggest you are nearing your "lowest effective dose" for the moment. It doesn't mean you won't get lower, just not yet. They may be steroid withdrawal, if they are going eventually almost certainly so, but slowing down a bit might actually speed up achieving the end game.
    • Anhaga
      Anhaga nick67069

      Posted

      Nick, do your symptoms get better as your body adjusts to the lower dose?  I hope so....
    • nick67069
      nick67069 Anhaga

      Posted

      yes they do. Symptoms are there only in the first 2 weeks when I start transition, then they slowly fade away.  I don't start next transition until I feel that most of the symptoms are gone.  There is another subtile effect of reducing pred. It seems to me  that I feel more energetic, more alive with every reduction. I am starting my old projects around the house and although I feel tired ( landscaping , masonary work, garden, etc), it is a good kind of tired that goes away after a nap or next day.
    • Anhaga
      Anhaga nick67069

      Posted

      I found that for a while, but now I'm below 5 adjustment also involves dealing with fatigue, which is I suppose the result of lazy adrenals, so now I have to wait for them as well....
    • nick67069
      nick67069 Anhaga

      Posted

      I am at 7mg, and probably starting to involve adrenals at this level ( mainly because of exercise, I think).  Dose it change so much below 5mg?
    • EileenH
      EileenH nick67069

      Posted

      It did for me - I was really well at 5mg for 2 years but every time I tried to go lower the fatigue increased. 4mg was livable with and I did for a lot of that two years but tried 3 times to go lower and had to give up at 3.5mg (alternate 4/3) as I couldn't function, twice returning briefly to 5mg to get to feel really well before the next attempt at reduction. The last time was shortly before the flare in January - was that the cause? I don't think so, but who knows!
    • nick67069
      nick67069 EileenH

      Posted

      live and learn... One never know what to expect next...

      Thanks...

    • Anhaga
      Anhaga nick67069

      Posted

      Nick, I'm lucky to have been able to get to 4, I think.  It's going to be a while before I can taper further, pretty sure about that, unfortunately, and I think it's only the light therapy which is helping me stay at 4 and not have to increase a bit.  
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