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Walking!

Posted , 15 users are following.

constance.de
constance.de

How is it that most of you say walking helps you get rid of the pain?  If I walk for 20-30 mins I have pain which takes ages to clear up - sometimes into the next day, or even the day after (and it has since the PMR started).  Exercise is good for you!  OK, I know that, but what do you do if you get more and more pain by doing it?  

0 likes, 38 replies

38 Replies

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  • EileenH
    EileenH constance.de

    Posted

    Then you have to consider that the pain you have is something other than the PMR itself.

    For example: I had horrendous low back pain if I walked or stood for more than 10-15mins. It wasn't PMR it was myofascial pain syndrome that was particularly affecting my lower back and making the muscles spasm and that, in turn, was pulling the sacroiliac joints about. They were getting inflamed and that hurt. Eventually it was so bad I literally couldn't move without screaming.

    I assume you are under a rheumy for the PMR. Where is the pain? Back? Legs? 

    Is there a really good orthopaedic doctor in your area? I had a wonderful one in Herzogenaurach (Adidas town in Bavaria) who had also trained in chiropractic - his Chefarzt was adamant it was an essential skill for an orthopod. Ask around.

    Or ask your doctor for a referral to the local pain clinic.

    • constance.de
      constance.de EileenH

      Posted

      It's in my hips and I really can't tell anymore if it comes from the PMR or OA.  All I know is - it 'hurts'!

      What's the difference between a rheumy and an orthopod?  I thought the rheumy would see to all those things.  

      I've thought of a pain clinic but they wanted me to go into hospital for 1O days.  I have an in-patients sojourn coming up soon in a rheumatology clinic, so I'll have to put the pain clinic off for a considerable time.  (Don't know if my insurance would pay for both).

    • EileenH
      EileenH constance.de

      Posted

      I think this covers it:

      "Patients might need an orthopedic physician if they have:

      Joint or musculoskeletal pain that began after an injury

      Gradually progressive hip or knee pain that is worse with weight bearing

      Joint pain that is severe and interfering with function

      Moderate or advanced arthritis of the knee or hip

      Previous unsuccessful treatment for joint pain

      Been told by their doctor they might need a joint replacement

      Patients might need a rheumatologist if they have:

      Pain involving many joints

      New joint pain not associated with any injury

      Joint or musculoskeletal pain associated with morning stiffness, fever, fatigue, rash or chest pain

      Joint pain that followed a tick bite

      Joint pain associated with back pain

      Joint pain and psoriasis

      Muscular pain with or without any other symptoms

      New headaches or muscle aches and are over the age of 50

      Back pain with or without pain in the legs

      Unexplained, ongoing symptoms such as fever, sweats or weight loss"

      It depends what is causing the problem - orthopods do more mechanical things. If you had RA and a joint was damaged it wouldn't be the rheumy that sorted it out, you'd be sent to an orthopod. It was the orthopods at the hospital who dealt with my trochanteric bursitis with steroid injections.

      But actually - an orthopod didn't recognise the source of MY low back problems when I was seeing him after a whiplash injury which probably made the muscle problem worse, he just looked at the upper back for some reason. Does your insurance allow you to see a physiotherapist without being referred? Physios are very sensible people when it comes to muscle problems or bursitis and a good place to start.

    • constance.de
      constance.de EileenH

      Posted

      I can see a physiotherapist, but I don't know how often.  However, it's only €25 for a session so I could easily pay for myself.  How often would you visit one?
    • EileenH
      EileenH constance.de

      Posted

      I would go to see her and ask her to go through all the possibilities - if she can identify something she can do something about or can tell you what she's found and who best to deal with it, then you can decide how often. You have to identify what the problem is first.
  • molly1957
    molly1957 constance.de

    Posted

    I'm the same Constance walking is about the only excercise I get but like you if I do too much I ache and feel exhausted and that's usually after half an hour .
    • EileenH
      EileenH molly1957

      Posted

      Try starting with 10 mins at a time - rest and do another 10 mins. You will probably be able to build it up but like everything with PMR it is about pacing and resting. Do everything in small bites and you will achieve more altogether. And as you build up your fitness you will find you can do more without aching afterwards. It took me about a year to get from almost being unable to walk into the village (about 200yds) to now doing a 30 min round walk - which took me a good 45 min with rests at first. You have to build things up slowly though - try to do too much at once and you'll ache.
  • noninoni
    noninoni constance.de

    Posted

    I recently read that soreness from exercise can last longer in patients taking prednisone, because the inflammation needed to repair the muscles is suppressed. I had just experienced prolonged soreness from some very moderate but new exercises, so that made sense to me.  I walked like a zombie for a few days.
  • reggie92967
    reggie92967 constance.de

    Posted

    I'm hoping to start walking again today. I used to be a,daily long distance walker for years. I guess if I'm stiff, have pain, throbbing inflamation, fatigue, it has decreased with prednisone but creeping back in, & if walking is good, then I'll do it even if I get more soreness. At least, I'll know it's from doing something good for myself. Best to everyone on this great talk-line, anyone else in MI ? Reggie A.
    • constance.de
      constance.de reggie92967

      Posted

      Oooooo!  Aren't you good?  All I want to do when I'm in pain is go to bed.  It's the only place I am pain free - except in the night when pain wakes me up two or three times.😡😡
  • nervebyte
    nervebyte constance.de

    Posted

    Some pain should be manageable however further pain is your body telling you to moderate your exercise.

     

  • JanSP
    JanSP constance.de

    Posted

    I have to walk to develop the strength and lose the weight from the pred. My PMR isn't effecting me now but I'm on three suppressants including 30 mg. of pred from my GCA down from 80 mg. My appetite increases with the pred and I'm depressed and sleep a lot so that doesn't help at all. I put 40 lbs on my short body and I still had 10 left over from my last flare. I put on 40 lbs that time too. My round abdomen is pushing up taking away space I need for breathing and my scoliosis doesn't help either. I get out of breath just walking around the house. It's a good thing we bought a one story place when we moved here to Florida four years ago. When I try to walk outside I am huffing and puffing and my legs feel like wet noodles. My husband comes with me cause I feel light headed sometimes. I am trying to concentrate on the good things that have happened in the last few weeks, successful cataract surgery on both eyes and the pharmacy company paying for the Actemra I just started as well as take my antideppressent. It's a beautiful day, I love gardening but I have no energy or breath to do much. Thanks for letting me whine. Oh yes I can't have wine. One of my autoimmunes PBC attacks my liver so no alcohol for me. Every once in awhile these 6 1/2 years of a totally changed life gets to me. I loved my work and didn't want to retire and give up a 29 year old "edutainment" business I created. Like many of you I was very active. I should be happy the PMR isn't active and I don't have much pain right now. Some of you are having such a bad time.
    • constance.de
      constance.de JanSP

      Posted

      Poor you!  I was on 60 mgs pred for a while because the doctors couldn't understand why my ESR and CRP readings kept rising, even on pred.

      Luckily though I LOST weight.

      Carry on "whining", we all do so every now and again, and it does us good  to know there is someone out there that UNDERSTANDS.

      Try to keep positive.

      All the best fr Constance

    • reggie92967
      reggie92967 JanSP

      Posted

      Jan, I have gained so much stomach weight, it's terrible I was diag. in July, so only been on steroid for 6- months, currently 20mg. I kniw how you feel about weight gain, & I'm gaving effecrs from the gain, but I guess the benefits of the prednisone are worth it I am slowly but for sure having PMR symptoms returning. Especially the upper arm, hand wrist pain/soreness/stiffness, leg throbbing, must be inflamatoin, but the worst for me is the terrible fatigue & lack of energy, no matter how much I sleep or rest. My Rheumatologist. just advised vitamin D, which I was deficient in, so I just started on it. I see my PCP tomorrow who is very knowledgeable & experienced in steroids. He is very helpful between my Rheumatologist 3-month appts. & labs, yet is very respectful of the specialist making the major decisions & handling of the PMR. I also have Waldenstrom's Macroglobulianemia (WM), a non-Hodgkins lymphoma, very indolent, & treatable. I know this plays into my PMR, the immune thing & all, & similar symptons esoecualky fatigue/anemia.. Although, my WM is very controlled now with quite a newly FDA approved oral chemo drug, Ibrutinib. Many of the longer term side-effects of the drug are of course unknown. Well fir niw I'm trying to adjust to sitting still, rest duringbtge day, & acceoting what I cab't accomplush anybguven day

    • reggie92967
      reggie92967

      Posted

      Cont. from Reggie, sorry hit send to fast... For now trying to adjust to not blaming myself or labeling myself lazy because of my fatigue & trying to acceot what I can't accomplish on any given day. I wish we PMRer's could all come together & have one big monthly support group meeting.
    • EileenH
      EileenH reggie92967

      Posted

      Is it just PMR you have? If so, after 6 months you really should be reducing the dose of pred - but if you still have so much pain is the doctor really sure it is the PMR we talk about? 20mg should manage it pretty well and the pain should not be increasing.

      And you should be on both calcium and vit D as a precaution against losing bone density anyway but you should have had a dexascan to visualise the state of your bone density. If it is OK then calcium and vit D may be enough, if it isn't you may need other approaches.

    • reggie92967
      reggie92967 JanSP

      Posted

      Jan, How long were you on 80mg. & how quickly did you reduce to 30mg. & how long in the 30.mg. ? What was your intial start up of prednisone ? Did you go up & down allot & why as high as 80mg. ? I thought my 20ng was high ? Thanks for any further info. you can share.
    • Silver49
      Silver49 reggie92967

      Posted

      No wonder you are so fatigued if you have WM as well as PMR. You say the WM is well controlled but does the combination of that and PMR not add to your fatigue. I assume you have discussed it with your Haematologist. My OH had 2 conditions, one of which is a haematological disorder. Each impacted on the other. He had surgery for one which was successful but the haematological one continues with some but lesser impact. Please  do not even have the words blame and lazy in your vocabulary. There are very good reasons for your fatigue and inability to achieve what you could previously accomplish.
    • reggie92967
      reggie92967 Silver49

      Posted

      Thank you SO much for your kind supportive words. Sometimes we need to hear it from others dealing with similar issues. Much appreciated !
    • EileenH
      EileenH reggie92967

      Posted

      If the PMR progresses to GCA and it is affecting the blood supply to the optic nerve there is a risk of damage to the optic nerve and permanent loss of vision. A very high dose of pred is used to reduce the inflammation as quickly as possible since the risk of blindness is more serious than the risks of high dose pred. Generally a dose of 40mg is used to start with unless there are visual symptoms already in which case 60mg is often used. If that dosen't achieve a result quickly enough they go up. It is even known for 100mg as an infusion to be used. Once one eye has lost vision the other often will follow shortly afterwards so aggressive management is needed.
    • JanSP
      JanSP reggie92967

      Posted

      Reggie, I was put on 60mg when I first developed GCA and for 3 of the flares. One of them I just backed up to 40mg as the flare started when I reduced to 35mg (I think). On my 4th flare in May the 60mg didn't get rid of the symptoms so my rheumy increased it to 80mg. I've been on 30mg now for two months and it's been a straight taper down. I don't know how this is all going to work this time since I was put on the actemra with my second injection on Friday. The only thing that has been reduced since the actemra is .2ml meth. One of the women in my retirement community of 450 houses lost vision in one eye when her GCA wasn't diagnosed fast enough. That scared me. Hopefully her other eye stays safe with the pred she's on now. 

      The highest PMR dose I was on initially and with my one flare was 40mg. It was like magic. From almost not being able to walk to being able to crawl upstairs to the bedroom I couldn't stop saying "It's a miracle." I don't know why my rheumy used such a high dose for PMR but maybe it's because I already had GCA? 

      It seems like no matter how much I sleep and nap (with a CPAP-no oxygen) I still wake up fatigued. I'm lucky my husband does the shopping, cooking and some of the cleaning.

      Good luck.

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