Strategies to manage fatigue

[Knoesel]

Hi guys

I have been diagnosed in April and been on Ursodiol since. No idea yet if the medication is working since I switched insurances and my first appointment with the hep specialist is still two months out. (What a system!) Anyway, for the most part I am doing ok but the fatigue and it’s unpredictable pattern is getting to me and seriously affecting my work life. (I am trying to finish an academic book and simply lack the bandwidth for sustained intellectual engagement)

I just read that the fatigue we are experiencing is not peripheral, i. e. brought on by let’s say muscle fatigue or lack of sleep or any other extraneous event, but rather centralized due to neurophysiological or chemical messages from liver to brain. Hence, no matter how often you sleep, the sense of exhaustion does not diminish.

This realization has gotten to me since my regular lifestyle ( eating healthy home cooked meals, lots of fruit and vegetables, working out daily, no alcohol) does not seem to make a difference.

Before I slide into depression I am wondering what are good strategies to deal with what seems to be the status quo. The fact that I am coming of HRT does not help either… thanks in advance.

[rderezin]

I know what you mean...I was diagnosed at 46 and am now 71...my job then involved lots for travel ..work...stress..never less than 80 hour weeks...after trying many things this is what worked.Movement... forcing myself...if home ...in morning would throw on clothes ..put coffee on ..walk out door for 10 -15 short walk ..come home ..coffee ..zone out for 20 minutes..then shower...during day...get up and move..take drink of water..fresh air and bsck... if needed give yourself 10-15 minute zone out time then force yourself up and moving....I did retire at 60 but increased my volunteering seasonally to almost a full time job...the hardest is to force yourself up after a 10 min timeout ....

Hope it helps..a routine works well..I also was a big swimmer and always belonged to a health club.

Rita

[Knoesel in reply to rderezin]

Thank you Rita.

Funny, I have been doing something similar almost instinctively: allow myself to take quick naps (which never seem refreshing but inevitable) and try to walk or work out when feeling really low.

I am struggling to still wrap my head around the new normal, and just don’t want to accept the diminished me. That part seems the hardest but I am sure it will happen sooner or later. I seem to resist the idea of a permanently changed sense of self, yet we’ll know that resistance will not change the facts.

It’s the intellectual work that seems particularly hard at this point, focus, concentration and sustained attention are almost impossible.

And then there are days when my energy level is good and I am grateful that the symptoms aren’t constant pain or more unpleasant or debilitating things.

Will try to keep moving.

Warm wishes

Susanne

[OdinsMom]

Some try provigil if they can get it covered. Nothing worked for me (I wasn't adding my drugs) but the good news is it comes and goes. I lived with chronic fatigue and pain everyday for 4 years -actually had to go ssdi. Then it lifted some to general tired. Post tx and the tired hasn't gone but now is a combo of aging a decade, post tx meds, just doesn't go for some and recurrent PBC

[Nellies47]

Hi.I was diagnosed dec 2020.

I too find the fatigue very hard to cope with and the thought that I will have it forever.

I have had to reduce my working week to a 3 day week. This has helped.

I also find I need a nap, I usually take at least 1 hour every day. Some days I need it earlier than others, and sometimes 2 naps. I still sleep at night even though I nap.

Also I also force myself to move, a walk or a yoga class on utube.

I am learning not to plan much in the day and to be proud to get to through the day instead of beating myself up when I can't do what I usually could in a day.

Hope this helps.

Nelly

[Tzarboy]

All the thoughts on fatigue were so encouraging to me. It was hard when I came to the realization that the fatigue would never go away and this was the new me. I still have people in my life that don’t totally understand, but thank God, I have a husband who does. He does so much for me. We must all continue to share our thoughts and encourage each other. Thank you so much.

[vballgoddess11]

Hi there. Have you tried Cryotherapy? I’ve been doing it 2-3x/week for the last year or so and I do think it helps. The place I go to also offers Red Light Therapy and I believe it’s been helping me as well. I’m sorry. I completely understand, I’m 41 years old, Stage 3/4, with 3 school age kids and used to be incredibly active and fit. My life has changed drastically and some days it’s hard to accept, I still grieve for the “old” me. Hang in there, if you have Cryotherapy in your area, it’s worth a try. I’d also give it some time, 3-4 weeks, before making a decision on whether to stick with it.