One year

I'm coming up on my one year mark of being diagnosed with PMR at age 61. I'm at 5mg of Prednisone daily and see my rheumatologist soon for another check in. I just want to say thank you so much for this website!! It has been such a valuable tool & so much help to me. I work full time, help out often on weekends with 7 grandchildren I am blessed with, which includes a 2 hour drive, & try to get a 2-3 mile walk in each evening. I think one of my hardest things with PMR is reminding myself that I have to pace my activities and try not to do too much. Also, because I don't "look" sick, others don't realize I have limits. Again, I can't say it enough, thank you for the support in this site!!!

18 Replies

  • "I think one of my hardest things with PMR is reminding myself that I have to pace my activities and try not to do too much."

    I'm speechless after that list of activities!!!!

  • Ditto!

  • Ditto a few extra times from me!

  • Well, guess what? Ditto from me, too!

  • Ditto 😦

    What's your secret?

  • Today, gorgeous weather day that it was here in Minnesota, and with a whole day free, I weeded half a raised garden bed of strawberries, transplanted 10 volunteer violets and watered everything. I feel stiff, sore and exhausted as a result. My neck was making "cracking noises" towards the end, the sides of my legs ached and lower back hurt too. Light headed from pred too.

    A year ago, I would've weeded 5 or more garden boxes in the same amount of time, and probably planted most of them too. "Pace yourself Joan" I kept saying over and over. It's extremely hard to not want to push myself, even though I feel my body rebelling against more activity. Accepting this extremely low level of activity as the "new norm" is difficult indeed!

  • It just shows the differences in activities that we tolerate. It's difficult to pace, especially on days when we feel much better. I know that if I do too much one day, I certainly pay for it the next day! I've been looking out at the garden knowing that I need to get out there and attack it, but the thought of overdoing it and not being able to move the next day stops me. Meanwhile the garden is having a great time...!

  • Claire, I feel the same.....but just lately, I have found I can do a bit more and I don't get HIT with the fatigue and achiness as I did even a month ago. I'm still failing at the pacing but not quite so much. One day Claire it will all be better. Exciting, yes?

  • I'm so pleased to hear that you're experiencing improvements. That's very encouraging. Every little improvement must feel so satisfying and as you say, exciting! I'm a nurse and have had to go off sick as my job is full on and not currently compatible with how I'm feeling. I look at my uniform hanging up in the wardrobe and I'm longing for the day when I'll be wearing it again!😄

  • Glad to hear it. Gives us all hope!

  • That is, glad about Janell's response of being able to do more than before without aches or exhaustion . Sorry to hear about having to look at your uniform hanging in waiting, Claire. There will come a day when I can tackle my 5 garden boxes in one day (instead of a half box) and you will wear your uniform!!😀😀

  • Well said. They have no trouble throwing their own little parties!😎

  • The gardens, that is. (My replies tend to situate themselves in the wrong place , I've noticed)

  • Ditto from me too! It sounds like you have a very positive attitude in everything you do! Very impressed! 😊

  • Well done. I'm down to 3mg a day after a year of being diagnosed. I am 65 years old and retired. I dance 3 times a week and am following a gluten free diet. I feel really good and hope I can keep reducing. All the best to you. Like you no one knows we have this disease but we have to deal with it. Take care. X

  • Well done you, but be gentle on yourself.

    I too am coming up a year since diagnosis. Im 65 years and Am down to 7.5 mg. from initial dose of 20mg.

    Have had a couple of flares. But thank to this site and the lovely people who give their support and advice flares are becoming a thing of the past. Also my Dr is very understanding and supportive too. I still work full time as I run a boarding cattery but now I have more staff to cover than I used to. And have employed a fortnightly gardener, which actually leave me with the nice easy jobs of just doing my pots, which I love planning what's going in them each season.

    I have just returned

    To yoga again and try to walk at least 2-3 a week.

    We sometimes forget that we have this disease but I find it'll soon remind you if you over do it.

    We are all different and you just have to find that balance.

    So take care and remember you have done extremely well xx good luck


  • Good for you! Hopefully you are one of the lucky ones and are doing well after a year.

  • I wish I could manage half of all that activity :-)

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