Fatigue: Any way to tell before totally exhausted?

[katiewalsh]

Does anyone know how I can notice I’m becoming fatigued before I’m totally exhausted? I’d really appreciate suggestions as I currently end up so exhausted I have rest for the remainder of the day & sometimes the following day. Thanks, Katie

[Tico]

Hi katie, I can tell when i'm on the way to exhaustion easily as I start becoming clumsy and my memory becomes poor to the point I can't think straight and I do not trust myself to make reasonable judgements. It as been happening a lot lately due to medical issues with my young Grandchildren and the obvious stress that brings but also trying to shrug off what appears to be a permanent cough and cold. Their is really nothing you can do than but rest when you feel like that but rest before you drop! Atb,tina.x🤗

[katiewalsh in reply to Tico]

Thanks, Tina. I have the exact same symptoms of fatigue: clumsy, memory problems & poor decision making. But I don’t get that way until I’m totally exhausted which is how I know I’m exhausted. I also will get confused in the sense of wondering what I’m starting or am in the middle of doing. But until you described these things I hadn’t even realized that happens to me. Maybe with practice & looking for these things, I can catch it early. Have you seen your doctor about your cough & cold? S/he could make sure it’s nothing more serious and also possibly help you get rid of it faster. I’m fortunate with those. I catch everything like we all tend to but I’ve found the product Airborne knocks it our within 1-2 days if I take st the very first symptoms if I take the maximum dose. I used to have to get onto Prednisone & antibiotics immediately or it would cause serious respiratory problems. This is much better. Might work for you? Hope the grandkids health problems improve soon. And thanks again for answering!! Katie

[Tico in reply to katiewalsh]

Thanks katie for advice ref:cough & cold, but I refuse to see Dr because I know he will try to prescribe antibiotics as i've still got a bit of a raspy chest but as i've got asthma, I believe its par of the course and I try to avoid the antibiotics because I believe we can become too resistant to them. I hope you find a way to to spot the signs of you becoming exhausted but at the end of the day, you can't really prevent it unless you rest more,sometimes easier said than done! Atb,tina.x🤗

[katiewalsh in reply to Tico]

Hi. I understand completely your position & I was the same way. It’s my asthma and the fact that upper respiratory infections always went to my lungs which led my docs to put me on antibiotics & Prednisone right away because the infections were damaging my lungs. Every lung infection I get makes them worse. And if I dodn’t get completely better right away from the Airborne I get on the drugs immediately to be sure it doesn’t damage my lungs more-or become pneumonia which would be worse. I know this makes them less effective over time but numerous experts have advised this be done. So at least consider checking to see if your lungs are being harmed before the damage is permanent. Another member of this forum who, like me, has Common Variable Immune Deficiency, is on a constant low dose of antibiotics for prophylactic protection. Just some thoughts for you to consider. Take care, Tina, hope you’re healthy soon! Katie

[Tico in reply to katiewalsh]

Hi katie, will do, looks like I will be attending my asthma review after all which was booked in for next week and i've been avoiding or rearranging because i've been to busy. I hope you also start feeling better in yourself soon katie. Atb,tina.x🤗

[Cja1956]

I’m still working and this is my busy season so after a particularly busy week, sometimes I don’t get out of bed at all on Saturday. Sometimes on weekdays, I even take naps between appointmentsand I am actually turning away difficult clients. You just need to pay attention to your body and you will figure it out.

[katiewalsh in reply to Cja1956]

Thanks CJA, I am so lucky I’m not working and feel bad that you still are. It must be horrible at times. Thanks for the boost of confidence. I wish you all the best! Katie

[Cja1956 in reply to katiewalsh]

Thanks, Katie. I’m self-employed so luckily I can make my own hours. My income is way down this year since my progression to Myelofibrosis. But, honestly, I don’t know what I would do all day if I didn’t have work to occupy my time. And full retirement age for me is 66 and I have a little over 2 years to go. So I take one day at a time.

Thanks again for your kind words.

Best wishes,

Cindy

[ksos]

Hi Katie -- this is something I'm still working on, but my doctor suggested that I take a few minutes at the same time every day (morning or evening) to rate a few reliable indicators of fatigue. For me, that includes my general level of energy, clumsiness, mental fog, and trouble finding words. I'm visual, so I usually chart it and can sometimes see when the symptoms are starting to increase.

Of course, I have to have the energy and remember to do the tracking, so there's a real catch-22 here... but the idea of a daily mental check-in has been helpful.

I don't always catch an increase in fatigue because so often, it just seems to arrive full blown instead of building up over time. But when I do see it increasing, I can rest more and/or plan my activities at least some.

Good luck. Would love to hear of anything you find that works.

Best,

Kim

[katiewalsh in reply to ksos]

Thanks, Kim. Your method makes a lot of sense. I often realize at the end of the day (these are my good days) how tired I am & that I’m only realizing it because I’ve stopped & stopped concentrating on what I’m doing. Once I’m not distracted I notice how I feel. I may start setting my watch alarm to remind me to follow your suggestion. Charting makes sense because it lets you review & understand more clearly any patterns of fatigue, time of day, etc. I’ve been taking Ginseng at my MPN doc’s recommendation. I’ve not noticed an improvement yet but a study showed American Ginseng helped fatigue in MPN patients. He also recommended Yoga so will try that soon. If I find something that works to reduce fatigue I’ll be sure to post it. Thanks, again, for the good suggestions and good luck to you. Katie

[ksos in reply to katiewalsh]

Thanks, Katie. What I love about this forum are all the little things we get to share with each other that can make all of this easier -- like setting a watch as a reminder to check in on how I'm feeling -- that's brilliant! I've also heard/read about yoga helping and am beginning to do that. I'll give ginseng a try. Take care - Kim

[katiewalsh in reply to ksos]

Hi, Kim, while answering Bobthecob I remembered two helpful things I do. It doesn’t change the fatigue but let’s me live better with it. I sit as much as possible & carry a cane chair so if folks stand to talk I open it up to sit and the same if in line at the market. I don’t need the cane, just the chair. Second, If I limit what I do to one brief activity a day I’m usually ok. But I’m talking about things like a 1-2 hr bookclub meeting, sitting and painting a few hours or having lunch with friends. More than that wipes me out and even with this there are days I can’t do anything. I can’t do a full day painting workshop without being wasted for 2 days. But if I need to buy groceries, I ride one of the stores carts & then that’s my only activity that day. Cooking (meal prep & clean up) is impossible unless it’s something like making a sandwich or cereal. And I sit on a kitchen stool whenever possible. I hope this helps. It certainly doesn’t give me more energy but does allow me to be active without a full day of fatigue after. Katie

[ksos in reply to katiewalsh]

These are useful tips, Katie, and thanks. I really like the cane stool idea; there are so many times when I'm in line that I just want to sit down. And I've been finding I can about one focused thing a day as well - shop, or make a real-baked meal, or have lunch with a friend. Then it's off to rest.

I also had to give up painting workshops as well as a weaving class I was taking -- they were just too much. I've switched over to embroider and hand needlework, which thrive while sitting, and that's helped alot. It's wonderful to be able to do something creative. But I do miss the companionship of the classes -- too much for me any more. Kim

[Inca in reply to katiewalsh]

My prob is unable to sit,have 'severe osteo arthritis' in right hip ...so keep upright long as poss!!!!! Then of course must lie down for rest.

Nuisance is a mild word to describe it.

[Cja1956 in reply to ksos]

That’s a good idea, Kim. I’ve often thought I should be keeping a journal so when I visit my doctor, I can refer to it. Every time I see her which is now weekly, they give me a questionnaire but it’s hard to remember everything that happened that week. So I think that maybe I’ll start that journal. Thanks again.

[Wyebird]

Like wise, sometimes even a week. Learning the signs now.

Breathless, anxious and feel as if I’m shaking inside.

Also I’ve cut sown on my weekly schedule. The occupational therapist helped me a lot.

[katiewalsh in reply to Wyebird]

Thanks. Yes, breathlessness to. Good luck! Katie

[Bobthecob]

Hi Katie, I tend to have a bit more energy in the mornings so try to get jobs and seeing people in the morning. I work just one day a week, I try to rest the day before and the day after. I seem to hit fatigue in the afternoon in the past when working more hours I tried to ignore it but this left me shaking, trembling and so exhausted having to go to bed for days. I just accept it is part of the disease, I used to try to hide it. Hope you manage to pace yourself, it isn't easy

[Wyebird in reply to Bobthecob]

Wow that’s me to a tee!!

[Tico in reply to Bobthecob]

Hi Bob, thats me, more energy early hours in the morning, then start to flag, I wish people around me were the same like me.Like my Grandchildren who are still going at it full throttle! Lol,only joking, wouldn't change them for the world! Atb,tina.🤗

[Cja1956 in reply to Bobthecob]

I always get up in the morning to make breakfast but right after breakfast the fatigue hits me again and I’m back in bed. Every day I say to myself that this is the day I will feel stronger but it’s always the same. I do work so sometimes if a client calls me, I have to push myself and sometimes I have meetings to go to, but all in all, the fatigue is always there.

[Bobthecob]

It is good to know we are not alone with these symptoms isn't it

[Mwalimu]

I suddenly feel very tired and notice I often 'go white'. I usually fall into bed and tend to sleep for a couple of hours.

[katiewalsh in reply to Mwalimu]

Hi. By ‘go white’ do you mean your face turns white? That’s what my face does when I’m severely exhausted & barely able to speak or move. Katie

[BloodZero]

For me I learnt from experience. Over the years I paid attention to how certain activities impacted me and now I can plan ahead. Things like how much sleep Ive had, the quality/type of food Ive eaten. My activity, what ill be doing during the day and I have a pretty good idea of how i will feel the next day and I plan head. Or plan to rest.

As for symptoms, for me there is no real warning. I can have achy muscles and joints but energy is good. Other days I could be free of brain fog, dizziness muscles aches but have severe fatigue. But the fatigue is the easiest for me to predict in my case.

[katiewalsh in reply to BloodZero]

Thanks for sharing. It’s clear I need to start paying attention to all these things. Katie

[tracey13]

My husband has realised his diet effects him massively with fatigue and exhaustion. He tries to eat more protein and less sugary food . He has to eat little and often too. This keeps his energy levels up.

[ksos in reply to tracey13]

That's interesting, Tracey; I've found the same thing. Sugary foods will lay me flat; protein gives more energy. I'm going to try the "little and often" approach and see if that helps, too. Thanks, Kim

[tracey13 in reply to ksos]

My husband always thought it was his MF causing the exhaustion until he made changes in his diet and he's noticed a big difference . He gets tired but working full time is probably adds to the cause of tiredness .

[Marossi]

I try not to plan too much on any one day. I know I need to slow down when I start feeling nauseous. If I try to press on regardless I end up really paying for it so try to pay attention to signals my body sends me now. Sometimes lying down for just half an hour to 40 minutes can give me the boost I need to get through the day.

[Anag]

I usually start feeling a nervous type of energy. I’ve usually done too much, haven’t taken any breaks during the day and am satisfied that I was able to accomplish so much. I wake up the next morning and I’m absolutely exhausted and it takes me days to recover properly. I’m fine when I do what I need to do at a comfortable pace, keep breathing properly and staying positive. As soon as I feel a bit psychologically taxed I must stop and lie down, feet up, for 20”-30”. Then I’m fine. If I do that 2x a day, I’m fine. If I go an hour over, then it’s tough getting back up. Better to stay on the couch longer. Hope to have helped Katie, Anag

[Inca]

Feel the same as you and replies.I work as prof sculptor ,get so weary takes ages to do ,frustration and tears ,then I need hubby to help me out of studio and then sleep.Now on Rux so my consultant tells me I will become even more tired as the disease progresses....Happy working tho ,it helps the mind.

Lots of water and exercise (not too energetic) is essential.Best to All.

[katiewalsh]

Thank you everyone for your very helpful replies. I’d reply separately but actually am exhausted now & heading for a nap. (Really) Katie

[ksos]

Katie, I'm so glad you asked this. It's been great to read all the replies and see how everyone is dealing with fatigue; I got good ideas from every post. Thanks, as always, everyone. Kim