1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Pacing in chronic illness - some useful links that explain it and how to do it

Posted , 15 users are following.

EileenH
EileenH

I hope the moderator will allow this post with its links but they are very appropriate in GCA and PMR especially as one of the difficult aspects of both is the chronic fatigue that the medication cannot and does not address. That is something we must do ourselves by lifestyle and attitude adjustments - one thing that rarely works is to work it out by exercise. Although exercise is very useful in PMR and very probably does improve the disease state, increases must be adapted to suit the individual patient and to ensure not causing a "boom and bust" state where you feel good and do a lot only to become excessively fatigued as a result. Then you rest a lot - and start it all over again. By pacing you can enjoy a much more even lifestyle and know that you can plan to do something and have a fairly good chance of it being successful.

Every month on the Lupus UK forum they publish a "topic of the month". This month it is about going on holiday - and how to enjoy it! One of their points is about pacing yourself so you don't run out of steam - important any time when you have a chronic condition, not just on holiday. They include these two links. They weren't aimed at PMR and GCA patients but the concept is the same - and they are well worth reading:

To learn more about pacing techniques and how to apply them, here are a couple of great resources available online;

South Devon Healthcare’s Patient Guide, ‘What is Pacing?’ – http://www.torbayandsouthdevon.nhs.uk/uploads/24053.pdf

Action for M.E.’s booklet, ‘Pacing for people with M.E.’ – https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf

The second is particularly good - even if it is designed for ME or chronic fatigue syndrome, we too suffer chronic fatigue due to an autoimmune cause. Dealing with it is no different whatever the illness concerned.

11 likes, 24 replies

24 Replies

Next
  • Anhaga
    Anhaga EileenH

    Posted

    Very interesting.  I shall bookmark these and take time to read them properly later (gotta pace myself!  wink  ).  I could have used a bit of this advice when I was first diagnosed with PMR, but I did learn through time.  Have you read The Spoons Theory?  (Google it)

    Have a great day! 

    • Anhaga
      Anhaga

      Posted

      Of course you've read the spoons theory - I thought you were the "other" Eileen on the bones forum I also follow.  Sorry!  redface
    • louisa85653
      louisa85653 Anhaga

      Posted

      I have read the spoons theory too - I just took a while to realise how many spoons I have (or should I say don't have!)
  • Guest
    Guest EileenH

    Posted

    Once again Eileen, many thanks for your info. My husband understands my fatigue issues but my grown children and grandchildren do not have a clue!! I have had to learn to say NO...difficult but necessary. Please keep helping us! Ann11195
    • louisa85653
      louisa85653 Guest

      Posted

      Am right with you on the saying NO front - it is so very hard to do and my consultant - along with my close friends and husband are great with support on that.  It is still hard though.... especially when I used to be the person running around doing 101 things!  Same story for many people I guess!
  • louisa85653
    louisa85653 EileenH

    Posted

    Thanks so much Eileen.  I can't tell you how helpful this is right now.  I am having huge problems with fatigue and general lack of energy- partly exacerbated by a large amount of family stress currently.  However, I am doing all I can to pace, exercise and am having to put a PhD on hold which is heartbreaking but I am finding it so hard to concentrate and have to keep all my available energy for dealing with the pmr and family things which are essential!

    Anyway, I am being put on methotrexate now to alleviate the pred side effects so am hopeful that things may improve soon on the steroid side effect front (though I am aware that it probably won't help the fatigue - oh well!).

    • EileenH
      EileenH louisa85653

      Posted

      Don't build your hopes up too far and be disappointed if mtx doesn't "alleviate pred side effects" - it doesn't work for everyone and comes with downsides of its own. I do know 2 people for whom it has worked well though - hope you'll be the third.

      What side effects in particular? And at what dose?

    • louisa85653
      louisa85653 EileenH

      Posted

      Hi Eileen

      The main side effect is 'likely glaucoma' which has resulted in some small sight loss which we don't want to increase.  There is of course the usual weight gain which I am trying to alleviate by reducing carbs and exercise (though have been feeling so weak that exercise is quite minimal ie about 4-6 lengths very slow in a pool once or twice a week, some walking and a yoga class once a week.  I am currently on 7mg pred and have been fluctuating between that and 8mg since before CHristmas.

      The rheumatologist is apparently keen to get me below 5mg as I have been on pred for 2.5 years now...

    • louisa85653
      louisa85653

      Posted

      and also I am still quite sore and stiff at the 7mg dose so I am concerned that maybe it might be something other than PMR - or perhaps I need to be on a higher dose and maybe that is why he is suggesting the mtx?  This is all very confusing but I do know someone who has used mtx and found it useful and I did have one or two positive responses to the post I put up about mix. I do know that everyone is different though!  I just want to get back to my normal active self - here's  hoping! Thanks for your advice - it is much appreciated.

       

    • EileenH
      EileenH louisa85653

      Posted

      I've been on pred for nearly 7 years, 2 of them at 5mg but otherwise above oe a lot above - I haven't crumbled yet! I assume you are on eye drops for the "glaucoma" - raised eye pressures are common along with pred but that isn't the same, there are more criteria to fulfil for glaucoma. That by the way is why a visit to the optician (in the UK) is worth every penny an annual test may cost you.

      As for the weight problems - a lot of us have succeeded in either losing weight (38lbs in my case without exercise as I had other problems at first and was on crutches for a long time) or avoided putting on much/any weight by cutting carbs drastically. Pred changes how you process carbs, remove them as far as possible and it does seem to help a lot.

    • louisa85653
      louisa85653 EileenH

      Posted

      Thanks Eileen

      Yes, I have been on eye drops for about a year - though it has only taken until this last visit to my rheumatologist for him to raise it as an issue (I had raised it myself earlier though!).  I will go back to the optician for another test - in fact the opthalmologist suggested that too.  Sometimes it feels like I am bothering all these people as I do have to keep asking - eg my rheumatologist appointment last week was the first since the end of September (I had been scheduled for end March but for some reason it was put back until May).  I do keep seeing the gp every month or so after blood tests to discuss tapering and now I will have fortnightly blood tests with the mtx so I can ask the nurse questions (she is extremely helpful).  And will keep using this forum!

    • louisa85653
      louisa85653

      Posted

      Oh and I am glad to say I am now seeing the rheumatologist in 3 months time rather than 6 so at least he can help me monitor the effects of the mtx.  I am mainly keeping hopeful and positive though sometimes that is easier to do than others!
    • EileenH
      EileenH louisa85653

      Posted

      i wouldn't worry aout bothering them - it's the only way you get taken seriously in some places! A good rheumy wouldn't just leave you to the GP - especially if you are to be on mtx, it's a specialists only drug as far as I know. You should have a specialist rheumaotlogy nurse at the very least - though my experience trying to contact one wasn't very speedy!!!!
    • Silver49
      Silver49 louisa85653

      Posted

      I realise it's difficult to let go sometimes but your concentration will come back. I recently took up the piano again as an adult and was doing well until PMR arrived. My concentration went out the window so I was struggling with my lessons. I didn't want to give up but chose to follow an easier lesson and it still gave satisfaction but didn't stretch. Now that concentration has returned I am back on track and making progress again. Hang on in there it will improve.
    • louisa85653
      louisa85653 Silver49

      Posted

      Thanks for the encouragement - much appreciated! I will get there - hopefully soon !....
    • Elijo
      Elijo Silver49

      Posted

      Hi Silver,  Glad to hear your concentration came back.  Mine is NOT good, unlike the old me.  Maybe I'm older than you?  Maybe mine is age?  I can't wait for my mind to improve.  I belong to a Piano Friends group and I goofed up my presentation last week and felt horrible--I was  the Moonlight Sonata which I normally play with ease, but .....   I'm on 6 mg. now and SLOWLY tapering more slowly than the MD recommended.
    • Silver49
      Silver49 Elijo

      Posted

      I can understand how you felt about your piano presentation. I play Moonlight Sonata but haven't played it for a while. I must dig out the music again and play it. I am now in my 69th year so I don't know how that compares. I don't feel my age until I pass a mirror and see my grandmother in it since I gained weight with the steroids. I hope your concentration returns soon.
    • Anhaga
      Anhaga Silver49

      Posted

      Hi Silver49, we are almost the same age.  I just turned 69.  Quite horrified as I am now in my seventieth year and I can't believe it.  Three score and ten, the traditional lifespan....
    • Silver49
      Silver49 Anhaga

      Posted

      Age is only a number even if it does feel like 100 some days, though not so much now. We are only at middle age now😄😄 as people live so long nowadays. Well, perhaps just passed middle age and certainly not past it.
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.