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How does your PMR affect your walking?

Posted , 18 users are following.

kitsalley
kitsalley

The pain in my glutes and upper thighs is debillitating and I feel like I 'waddle'.  After a short ride in the car, for example, I have to 'get my legs under me' before I can even walk into a store.  Sometimes pretending I have to pick something up off the ground (embarrassed!) so I can stretch a little seems to help.  Does anyone else have this issue?

0 likes, 22 replies

22 Replies

  • FlipDover_Aust
    FlipDover_Aust kitsalley

    Posted

    I have trouble walking - my massage therapist tells me my glutes are in appalling shape! Mostly I'm just so stiff I can't get going and even when I do I have to do it slowly - if I try and go at what I consider a normal walking pace I'm forced to slow down as I just seem to seize up. Geting up from my desk at work and getting out of the car are the worst.  I get Mr Flip to help me out of the chair in the evenings on bad days.

    If I hang on to a trolly I can walk around the shopping centre for hours!

    • constance.de
      constance.de FlipDover_Aust

      Posted

      With trolley "walk around shopping centre for hours".  Lucky you, I'm exhausted after 20 minutes!!

    • FlipDover_Aust
      FlipDover_Aust karen81902

      Posted

      Lucky you! Most of us would love to take a pill and be 'cured'. The pred gets rid of the pain, but they don't work on the fatigue and stiffness. Remember, the pred doesn't cure you, it merely masks some of the symptoms.

      I was diagnosed in Dec 14 and put on pred straight away. It's been a long journey but with the help of MTX I'm now down to 5mg. I'm better now than I have been since getting sick.

  • constance.de
    constance.de kitsalley

    Posted

    Hallo kitsalley.  I have difficulty in getting into and out of the car.  I lift my legs in with my arms, swing out to get up, but first I sit and stretch before actually leaving the car (stops your "picking something up"??).  

    I don't know how old you are, but - with age we get stiffer anyway.  Swimming and short walks help.  

  • karen28161
    karen28161 kitsalley

    Posted

    Hi kits alley , yes totally understand were you are coming from , my legs and hips really really hurt when I get up from sitting down , I don't mind so much in the house , every one expects me now to have the penquin walk , BUT if I am out and I get up from a chair in restaurant , car or train ... I stand up feel the pain on my legs and hips and then I pretend to look in my hand bag , like I have lost some thing ! This helps me stretch my legs and prepare for the penquin walk haha , I am 56 yrs old , the joys of PMR x

  • rocketman42
    rocketman42 kitsalley

    Posted

    I find that much of my leg and hip "pain" is under control while on 11mg of Prednisone but I have another issue. When walking I find that my legs, glutes and hip girdle feel very weak as if they are going to "seize up" on me. I find myself walking rather slowly since I am just not able to move them quickly......not because of pain, but because they are just not functioning properly.  

    Same goes for my shoulders. If I'm lying flat in bed holding up a book to read it, I find that I can't hold my arms raised for too long before my arms and shoulderd tire to the point of having to lower them. 

    Anybody else experiencing this ?

  • ann3035
    ann3035 kitsalley

    Posted

    Hi Kitsalley, I was like that for a year before I was diagnosed with PMR but after 3 weeks on 15mg of preds the pain disapeared . Do you think you may need to up your preds.I know as we get older we get stiffer but you should not have to live with pain,  I'm 53

  • judy93591
    judy93591 kitsalley

    Posted

    Oh, yes!  Me also. My arthritic girlfriend has this theory. You stand, and pretend to arrange your jacket...etc. LOL 
  • jo42444
    jo42444 kitsalley

    Posted

    Most of the pain in my legs is on the inside and out side of my thighs plus glutes. When I stand from sitting or get out of the car It reminds me of whatching my Grama. She would stand and lean on the back of a chair for a minute before she would get going. She lived till she was 102. Im 58
  • joey_12298
    joey_12298 kitsalley

    Posted

    I only get the same problem as you if I do not have enough Prednisone.  My suggestion . Once on the appropriate amount of Prednisone, you should start to feel so much better.  Take advantage of that by strengthening your muscles. Stiffness can stay with you all day unless you warm up the muscles with at least a twenty minute walk and then follow up with a short rest. If the doctor thinks you are able, start lifting small weights. Build up your muscles while you have no pain. Just go easy. A light Yoga is very helpful to strengthen and stretch your muscles. Stretching exercises are highly recommended as they help with your muscle mobility and flexibility.
  • mphooey
    mphooey kitsalley

    Posted

    Oh absolutely. Before steroids I told everyone I was a penguin. That puts a little humor into it.
  • LayneTX
    LayneTX kitsalley

    Posted

    Funny, but not really, how we can all relate. Yes, after sitting, I stand up and have to stand there for a bit I guess to get the blood circulating in the legs before I can take a step.  

    I'm back to going to physical therapy and after certain exercises I have to bend over and stretch my hamstrings, the guy said "Layne, your always stretching".  I gave him a polymyalgia book, but he didn't read it,  he still doesn't get it, I give up and just take care of myself, if an exercise feels too much, then I say so. But we are making progress for my hip bursitis.

    But, yes, you are not alone.  And there is light, I'm down to 3 mg and can walk about 20-25 minutes now with much less and sometimes no pain. It's better if I can stop and sit for about 1 minute. 

    And I can finally get in and out of my car pain free.  Those who are pain free from Pred are pretty lucky. I can't wait to get off. 

    Oh, and to heck with people if they don't get it, just do what you have to do, wink just like asking for help, though I still feel like I have to explain why I'm asking... But my hubby said I really don't. 

  • candace1213
    candace1213 kitsalley

    Posted

    Some days, I am great on my morning walk.  Other days, I wonder why I bothered because I feel so uncomfortable.  My dog now has the habit that I walk her every morning.  If it wasn't for her, I don't think I'd get out.  But I know the waddle well.  It's weird how the pain travels.  My right hip has always been weaker and causes more issues.  But then suddenly it travels to my left hip. 

  • kitsalley
    kitsalley

    Posted

    I have been on steriods (prednisone) for 8 months and down to 7 1/2 mg.  Doc wants me to reduce further but I am scared to do that.  Conflicted about risk of pred vs. pain of walking and adding Imuran.  Anyone on Imuran?  
    • Anhaga
      Anhaga kitsalley

      Posted

      Why would your doctor suggest imuran?  For some reason this evening everyone seems to be being offered unusual drugs.  Is this just because he wants you to be off pred?  Frankly, looking at the side effects for imuran and the other drug I've seen mentioned this evening, remicade, I'd be tempted to stick with pred.  7.5 mg is not so big a dose.  If you follow the dead slow nearly stop reduction you will find you can reduce slowly but surely to a lower level, but you do need to be sure your inflammation is under control first.  Please don't let your doctor make you reduce too quickly at this point.  One or even half a mg a month is plenty fast, and some people find they need to go even slower.  Remember "It isn't slow if it works".

      Google healthunlocked dead slow nearly stop.

    • kitsalley
      kitsalley Anhaga

      Posted

      Apparently Imuran is being used to treat auto-immune diseases in much smaller doses than used in chemothreapy treatment of cancer.  Also used in organ transplants . . . to suppress immune system.  But it is linked to causing SOME cancers, especially of the skin.

       

    • Anhaga
      Anhaga kitsalley

      Posted

      But why would your doctor think you need it?  Surely one serious medication is enough, and especially as you're down to a fairly low dose already.  By 5 mg most of the pred side effects have gone away and you can do a lot to keep your bones strong through diet and exercise.  Your adrenal glands will be waking up about now, too, which is also a good thing.  I think it sounds like you are doing really well.  

    • jo42444
      jo42444 Anhaga

      Posted

      I have an appointment with a new rheumy on july 12 and am really nervous about the appointment. My last rheumy was concerned about me taking tramadol for pain in the amount of 25 mg a day which would be 1/4 of the dose prescribed. I have managed to reduce from 20 mg of pred to 3.5 in 18 months. Thought I was doing pretty good but because I wouldnt take methotrexate he fired me told me I should be referred to another doctor. Im afraid the new docor will have the same opinion. It seems like there has been a large shift in the rehumatology feild to prescribe an anti cancer or anti malarial drug with the prednizone to either reduce prednizone quicker or help reduce symptoms. I myself at 3.5 mg and yes I still have manageable pain am not buying it.

      Joanne

    • Anhaga
      Anhaga jo42444

      Posted

      This is very interesting.  I'm not an expert - only have my own experience and what I've read on the internet as well as what I read about others' experiences on here.  My gut feeling is that one avoids medications which are "experimental".  I think if I had been offered these alternatives the first thing I would ask the prescribing physician for some good, recent research information about the drugs.  It really isn't as simple and relatively harmless as prescribing aspirin for a headache.  Some of these drugs carry very serious side effects and the medical establishment can say what they like about how rare the side effects are, if a drug has not been used long for a particular disease no one really knows how common the side effects may turn out to be.  

      It depresses me that doctors are not more open to first of all investigating non-medication treatments - maybe there is something in our lifestyle, maybe we need more of certain nutrients than the general population, maybe we aren't getting enough of something else.  No one ever seems to ask these questions.  

      And in the modern world I'm afraid we have to look to the power of money to influence opinion.  Sorry to be so cynical.  

      I do understand why they'd want you off tramadol, but maybe there is another less risky way?  I really don't know, but your situation raises an awful lot of questions.

    • jo42444
      jo42444 Anhaga

      Posted

      I totally agree with you and I dont think it cinical. I think doctors in general dont really know what to do so they hand out pills. I get that for some conditions like ms rheumatoid arthritis and lupus these medications will help slow the disease down which is very important. For myself I know they are still questioning the diagnosis and it didnt help my case when on my last blood test my ANA went slighty positive. I think I would like to wait a bit longer and just stay on pred until such time as there are definite symptoms of a disease other than PMR. They should spend more money on research to find out why autoimmune diseases happen. I think only then will they find a cure. I dont think the drug companies would agree as it is about money. Joanne
    • FlipDover_Aust
      FlipDover_Aust jo42444

      Posted

      I really can't believe the rhuemy wanted to put you on MTX when you are only taking 3.5mg pred! What a wally!! It seems excessive.

      I take MTX, but ONLY because I couldn't get below 20mg pred and was getting sick from it - I would have done anything to get the dose down - and it worked. But now I'm in 5mg pred I'm more than happy.

      Personally I wouldn't take MTX if I was only taking 3.5mg pred.

       

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