New day - new aches and pains!: This is my first... - PMRGCAuk

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New day - new aches and pains!

Mapamundi1 profile image
6 Replies

This is my first post after joining 3 months ago. I am an avid follower of the website .As you can see on my profile I am travelling along the steroid Road and am learning it requires patience and a sense of humour! I have now decided to do slow taper from 14 mg rather than one step forward and two steps back after several hiccups on the way. My main concern is that no two days are the same - I never know how I am going to feel when I wake up. Some days I feel normal energy levels and enthusiasm and then next day it will be the complete opposite- fatigue and lethargy with aches and pains. Today I have had to cut my usual daily walk short because of terrible burning and cramping in my ankles, shins and calves and was really struggling to walk- this is a first! Is this all part of the journey or should I report it to the rheumatologist - I would appreciate your feedback. Thanks

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Mapamundi1 profile image
Mapamundi1
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6 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

And welcome…

Not only do you need patience and a sense of humour, but you need to learn how to pace yourself …. that may help with the boom and bust days you seem to be experiencing. ..which is not uncommon in chronic illnesses.

This post explains why you need to learn to pace your activities-

healthunlocked.com/pmrgcauk......

This also gives general overview of illness - if you haven’t seen before -albeit that you are not particularly new -

healthunlocked.com/pmrgcauk...

Muscle cramps may be helped by magnesium supplements or sprays.

Mapamundi1 profile image
Mapamundi1 in reply to DorsetLady

Hi thanks for your welcoming reply. I have recently started taking magnesium supplements so fingers crossed they will help. I was concerned it could be a circulatory problem as so low down in my legs, really weird - I always automatically blame the steroids or the PMR for most aches and pains that occur.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Mapamundi1

We are apt to blame Pred for most things - sometimes it is, sometimes it isn’t.

As you mention GCA on profile - do you have that as well or not?

Leg claudication can be a less common symptom of both that and PMR, so don’t discount it completely - it might be sensible to discuss with Rheumy.

Mapamundi1 profile image
Mapamundi1

I was initially diagnosed with GCA but that seemed to respond well to the Initial high dose of Prednisone.Now I seem to have more classic PMR symptoms. Will contact Rheumatologist just in case if it happens again.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Mapamundi1

Okay- let’s us know what rheumy has to say please,

PMRpro profile image
PMRproAmbassador

"I never know how I am going to feel when I wake up. Some days I feel normal energy levels and enthusiasm and then next day it will be the complete opposite"

Probably because on that good day you use up all your spoons and the next day is pay-back time! Then you rest more - and the next day is better! Try keeping a diary of activity and how you feel.

And have a read of the links here of you haven't seen it before:

healthunlocked.com/pmrgcauk......

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