I struggle with my fatigue. Its not really a sleepy feeling. Its more like I need to tidy up a room. I pick up a couple of clothes and all of a sudden I'm extremely weak. Exercise sometimes makes this weak feeling worse. Yet its all my previous doctor recommended. If you deal with weakness and fatigue, what else have you tried besides exercise?
Answer Summary
Members shared deeply about managing the profound weakness and fatigue that comes with fibromyalgia, with many emphasizing that pacing... Read more
I'm with you @A MyFibroTeam Member. There is no way I could exercise that long, I'd never walk again.
I deal with the fatigue and the need to do things by pacing myself. At the beginning of the week I write a list, in my journal, of all the events and chores I need to do. I then share it out over 5 days, obviously if it's an appointment I have to stick to it. I try to make sure that I don't overload myself each day. I highlight it when I have accomplished it. Makes me feel better and more useful. there are days when I cannot even begin to attempt things on my list so I just carry them over to the next day, next week or even next month.
Like you I cannot nap during the day. I can't even stay in bed of a morning, I have to get up.
@A MyFibroTeam Member I have been on steroids for the past 18 months due to sarcoidosis induced hypercalcemia which has resulted in CKD. Steroids do awful things to your body - weight gain (10kgs); Hypertension(220/110); osteoporosis; cataracts- to name a few which I now have. As a consequence I have to take a real cocktail of meds which in turn have their own side effects.
BUT ......... I am still here!
Awhh I feel that so much. Extending compassion to you. In addition, laundry is one of my most hated chores- it involves sooo many steps. People without pain and fatigue don't have to think about it, and it feels so unfair.
I pace myself throughout the day, and put away one or two clothes and then lay down. Then repeat. Put laundry in and then lay down. And then repeat.
In general, I made an excel spreadsheet of my daily tasks and daily demands of life and how much energy they zap from me, as well as an estimate of how much time they take me (longer than other people) so I can plan out how to get stuff done. I'm trying to learn that it's okay if I can only get to the absolutely necessary ones throughout the day (the urgent urgent ones)- we're allowed to have priorities.
As far as other resources, the main thing that has helped my fatigue is medication. I am on two pharmaceutical medications that help with orthostatic intolerance (not being able to stand) and fatigue.
I take naps everrday. Further more I do 1thing a day. Laundry on Monday vacuum on Tuesdays etc. My teenager do their own.
We alternated lectures with the exercise . Didn’t do all at once . Also different forms - 41 stretches started the days . Then lecture , then soft independent exercises , another lecture , lunch , then recumbent step machine . Then afternoon lecture and OT and distraction therapy which ended the day . Everything highly monitored and charted so we could see our progress and endurance build .
I saw almost miracles happen .
People came in wheelchairs and graduated with occasional walkers . Start small and work up .