Still suffering - update

[jessiem]

I’m feeling a lot better. Started taking pred before I go to bed and side effects are much reduced by morning - I would say reduced by 70% by the time I get up.

My question now is the fatigue. I know pred helps with the pain, which I have none of at the moment - but after doing a few things I feel so tired and have to sit down and rest. This morning I made beds, showered and pottered in the garden for half an hour. This completely took it out of me, is this the character of the disease? How do others manage. I feel like I’ll never be able to take the dog for a long walk again! Any advice appreciated.

[alvertta]

Slow but sure. Plan to

Do 15 minutes. Then rest. Gradually you will get back to longer times. But keep planning rests. When I started prednisone at 60 mg I could only do one thing a day that was active. Now at 10mg I can go all day with much shorter rests between activities. Yesterday I kayaked two hours. Sat for lunch one hour. Then a little garden work. Then an hour nap. Then ready to enjoy dinner.

[SheffieldJane]

So glad that you are feeling better. I am afraid the deadly fatigue is a big part of most autoimmune diseases. I, like most people, manage it with regular naps - proper going to bed naps, at the same sort of time each day. This will enable you to get the most out of the inbetween times and have a bit of an evening as well. The day you describe sounds like a good, productive day to me. Don’t upset your dog by lamenting over the long walks you are not able to have right now. Try to live very much in the moment. Walks on the flat in particular, can be increased gradually without much adverse effect. In the middle of my PMR my Fitbit was recording 10,000 steps a day, pushing a pram. I felt very motivated.

[jessiem in reply to SheffieldJane]

Thanks Jane - that’s sound advice. I’m running before I can walk! I will try and live in the moment.

[PMRpro Ambassador]

Most of us would have been floored by the shower alone at that stage! Never mind the rest As for making beds??????

Read all the links here:

healthunlocked.com/pmrgcauk......

The pred deals with the inflammation - but has no effect on the underlying autoimmune disorder. It chugs along in the background, attacking your body like an infection and making you feel as if you have flu. You are still ill - it will come but you may be stuck at a low percentage of your old normal for a while yet.

Leave the beds - take the dog for a gentle walk. Far better for you

[jessiem in reply to PMRpro]

Thank you so much - you’ve made me feel better about it all.

[Purplecrow]

My method of handling severe fatigue was to recognize it as part of the disorder, and plan accordingly. .. that means refusing most invitations for activities where I would be unable to stop and rest intermittently.

I also gave myself permission to take a nap every day, (some times two!) That means lying down for a specific amount of time. I limit naps to one hour, or less. Any more time cost me sleep at night.

It is hard to accept that PMR will rule your life for a while...but the sooner you wrap your head around that reality, the easier you will find your journey.

Kindly, J

[jessiem in reply to Purplecrow]

Thank you.