25 tips to manage the crushing fatigue of heart disease

~ Carolyn Thomas

by Carolyn Thomas ♥  @HeartSisters

For my whole life BHA (Before Heart Attack), I can hardly remember feeling real fatigue. Oh, sure, I’d feel sore working long hot days on our fruit farm as a teenager. Or sleepy after pulling those all-nighters in college. Or out-of-my-mind exhausted coping with a teething baby and a sleepless toddler. Or tired at the end of a stressful day juggling deadlines in my public relations career. Or maybe even pleasantly pooped after my running group finished a long road race. But generally speaking, on a day-to-day basis, never ever the kind of severe fatigue I experienced AHA.

I’ve always  been one of those disgustingly perky early risers who leaped cheerfully out of bed the minute one droopy eyelid cracked open to discover the clock showed anything past 4:30 a.m.  Once I finished leaping, I’d hit the coffeepot and then the shower, in that order. Then away I’d go, tap dancing 90 mph to meet the day ahead, rarely slowing down until I hit the pillow much, much later that night.

But after I was discharged from hospital following my heart attack, I was gobsmacked to suddenly experience daily bouts of extreme bone-crushing fatigue that I could never have even imagined existed before. 

I remember, for example, going for a walk one day with my son, Ben, shortly after coming home from hospital. My post-op instructions from the CCU had been to walk outdoors one block a day for the first week, two blocks a day the second week, etc.  Ben and I had barely made it to the stop sign at the end of our block when I had to grab his arm to lean on for support all the way home. I couldn’t believe it! I felt like a frail old lady, barely able to shuffle one foot in front of the other. And when we finally returned home (slowest pace in recorded history), I could hardly make it to the couch to recover from the exertion of this simple little walk.

What was happening to me?!?

It’s hard to describe this kind of relentless fatigue to those who have never experienced it, or to explain fatigue that is not relieved by just resting. And nobody had warned me in hospital that this relatively common reality during cardiac recovery was heading my way. I could find only a handful of research studies confirming what I was experiencing.

A 2008 Swedish study out of the University of Gothenburg, for example, found that about half of all patients who survive a myocardial infarction (heart attack) are still experiencing “onerous fatigue” four months after the infarction.(1)

Dr. Pia Alsén, author of this study, observed:

“Many people experienced the fatigue as new and different, not related to physical effort or a lack of rest; it occurred unpredictably and could not be attributed to any definite cause.”

The elusive cause of the fatigue might also lie in the damage done by the heart attack itself. When heart muscle is damaged from being deprived of oxygenated blood flow during a heart attack, scar tissue is formed on the damaged heart muscle, decreasing the pumping efficiency in the affected area. The resulting reduction of blood flow can produce fatigue, depending on the size and location of the scar tissue.

If you’re a heart patient diagnosed with mitral valve prolapse (MVP – one of the most common conditions that affect our heart valves), your mitral valve is enlarged and unable to close correctly, preventing blood from flowing normally throughout your body. When your organs don’t get an adequate supply of oxygenated blood due to MVP, you can experience extreme fatigue.

Some medications that you are taking for heart disease can also cause fatigue. These include the beta blockers (atenolol, metoprolol, etc.) and statin drugs to treat high cholesterol (Lipitor, Zocor, Crestor). 

And if you also have a sleep disorder like sleep apnea (a condition linked to heart disease), you can feel extreme fatigue during the day.

Weakness, fatigue, and shortness of breath are to be expected in virtually all those recovering from a heart attack. Heart patients being discharged from hospital should be advised before going home that they may find just getting out of bed, taking a shower, and dressing can feel utterly exhausting, especially in the early days and weeks.  See also: Why Taking a Shower Is So Exhausting for Heart Attack Survivors

It’s important to remember that symptoms like crushing fatigue can also be found in thyroid, depression and other medical conditions. It’s possible to have both heart disease and a second condition that is also contributing to your exhaustion.

Kelly Young, founder of Rheumatoid Arthritis Warrior, describes the kind of fatigue so many patients with chronic illness experience. She wrote:

“All of a sudden on Monday afternoon, it felt like it was 2 a.m. and I should be in bed. This is not the same as being tired. It’s more like being sick with the flu. I can remember the ‘good’ feeling of tired after working hard. This is not it – this is being sick. It can come at any time of day or night. 

“This fatigue is not always the result of physical activity. It can suddenly develop for no apparent reason. This fatigue can last hours or days. It makes movement very difficult.

“It is not a psychosomatic condition.”

Here’s Kelly’s list of tips in managing severe fatigue common among those living with a chronic illness (shared by her blog readers at RA Warrior):

  • Budget energy wisely. Guard energy.
  • Have a regular schedule. Or go to bed early.
  • Do gentle modified stretching or yoga.
  • Nutritious balanced snacks such as protein bar and fruit.
  • Get the best sleep at night possible.
  • Get the best bed possible.
  • Use heat to fight fatiguing pain.
  • Eat on a regular schedule.
  • Eat enough protein.
  • Take small naps.
  • Relaxation or meditation techniques.
  • Alternate periods of activity and rest.
  • Check for deficiencies such as iron or vitamin B-12.
  • Treat the disease as aggressively as possible.
  • While resting, plan for what you’ll do when you are more able.
  • Fruit juice & sympathy.
  • Check for side effects of medicines. Take them at the best time of day to avoid fatigue.
  • Accept the reality that the list will not be accomplished today.
  • Caffeine.
  • When the body says “No more” – stop.
  • Watch a movie.
  • Take large naps.
  • Delegate and oversee.
  • Blue Kryptonite!
1. Alsen, P., Brink E. & Persson, L-O. (2008). Living with incomprehensible fatigue after recent myocardial infarction. Journal of Advanced Nursing, 64(5), 459-68.

NOTE FROM CAROLYN: I wrote much more about the surprising fatigue that’s so common among heart patients in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the JHUP code HTWN to save 30% off the list price).

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Q:  Have you had to deal with severe fatigue since your heart disease diagnosis?

See also:

Why taking a shower is so exhausting after a heart attack

Exhaustion: the ‘leaky emotion’ of chronic illness

I need a nap!

Depressed? Who, me? Myths and facts about depression and heart disease

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Published by Carolyn Thomas

211 thoughts on “25 tips to manage the crushing fatigue of heart disease”

  1. I had my first stent in 2010. Second one in 2013 and have battled fatigue every since. I have not felt good since about 2008. I want to feel good again!

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  2. For about two weeks I have been experiencing extreme fatigue after moderate exertion. I am the proud owner of three stents, not new, and am wondering if it’s time for another. For somewhat longer I have had severe low back pain and now some in my neck as well. I suppose these are most likely unrelated to the fatigue.

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    1. Hi Theresa – blue kryptonite doesn’t actually exist (unless you’re in a Superman movie!) It’s a imaginary mineral on the planet Krypton that can drastically improve the health of anything organic, including humans. “Continual consumption of blue kryptonite puts humans in a perfect state of health.” Apparently! 😉

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  4. This so hit the mark. I kept thinking…is it just me? Anything I do exhausts me. Thank you for letting me know I am not crazy. I hope I can find the light at the end of this tunnel soon.

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    1. Hello Pat – I hope you find that light at the end of the tunnel soon, too! Hang in there – and try reviewing Kelly’s helpful list of tips and see if adapting some of them helps you towards that goal.

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  5. Thank you so much for sharing this! I thought I was going crazy. I’ve been trying to explain my feelings of fatigue but couldn’t. This article is me exactly. Now I know I’m not the only one.

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    2. Do any of you have a strange, almost icy hot feeling on your chest and shoulders? Aside from fatigue, I have it off and on. Doctor not sure what is causing it. Had a heart attack 3 months ago and had three stents put in. I am 35. Any comments would be appreciated.

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      1. Hi Lindsey – there are a number of reason that patients with stents might experience weird symptoms long after the procedure, such as stretching pain (fairly common, due to vasospasm or coronary artery stretch during the original procedure) or Dressler’s Syndrome (not as common but can start a few weeks afterwards; can also cause pain when taking a deep breath or when twisting the chest). If your symptoms continue, however, see your doctor. Read more about these and other forms of cardiac pain here.

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    3. It is now 16 months after a quadruple bypass and I am so tired. My arms feel like lead. I am not able to walk for more than 10 minutes before I am out of breath and start coughing, and if I don’t stop and rest I usually throw up. My doctors says surgery was a success and it will get better ….. but it is taking so long. Please does anybody have an answer for me?

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      1. Francine, I’m sorry you’re going through this. I’m sure you anticipated that you’d be feeling much better than this by now. Often the healing process seems like it’s advancing pretty well at the beginning with predictable improvements week by week, so when improvements seem to stall, it can be puzzling and frustrating. I’m not a physician so cannot comment specifically on your case, but I can say in general that a number of my readers have reported a similarly surprising length of time enduring bouts of exhaustion. Some studies suggest that ongoing fatigue is associated with depression, especially among female patients, far longer than for male patients following a cardiac event (although I wonder which comes first: the depression causing the fatigue, or the fatigue causing the depression?) Certain cardiac medications can also worsen feelings of fatigue. Please make an immediate appointment with your cardiologist. This is a quality of life issue. Not being able to walk 10 minutes without coughing, shortness of breath and vomiting is NOT a “normal” outcome, no matter how “successful” the original bypass surgery was, and it may be an early warning sign of further cardiac issues. Best of luck to you…

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        1. I am totally weary of the word “depression”. Being sick is enough without the onus of self infliction! This person is very ill and if she feels badly about it, good for her! She isn’t dead yet! She needs help yesterday.

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          1. Ann, you can be as “totally weary” of the word as you like, but it can’t minimize the very real psychosocial fallout and poorer outcomes associated with cardiac-related depression, nor does the word somehow imply self-infliction. This person is ill, and she needs to see her doctor immediately, which is what I told her, too.

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            1. Part of the stigma of mental illness is the idea that it is something that an individual can cure by themselves. I.e. It is self generated. Understanding depression has puzzled more than you or me. Furthermore it is used as a bandaid for almost everything from bunions to brain tumors. Even in this more elucidated age where Dr. Dyer can say “I’m Ok: You’re Ok.” It is convenient to dose out the Celexa rather than find the root cause of this devastating fatigue. Otherwise there wouldn’t be so many of us floundering in a state of enervation trying to get from one nap to the next.

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              1. Ann, I’ve written lots on mental health in cardiovascular disease here for years (including stigma – here, here, here for example) so I’m not disagreeing with what you say, except that it wasn’t Dyer who wrote “I’m Ok: You’re OK” – that was Thomas Anthony Harris.

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  6. Had aortic aneurysm and valve replacement 2013, haven’t been the same since. Fatigue is horrible, to the point that I sleep or vomit violently, ya don’t get a vote. Getting better now after 3 years of learning how to deal with it.

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    2. Hi Doug,

      Had the same operation as you did in 2014 and feel the same exhaustion still. I force myself to,walk but end up going to bed even earlier due to the exhaustion. I barely make it to 6 pm some days. I did not have this exhaustion before my operation. I feel very limited in life due to almost always being tired. Good luck to you.

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  7. Good day Carolyn and all who wrote,

    My heart breaks to read of so many people having to experience this terrible debilitating exhaustion. I also had it for many years of my life. No one understood, nor did I until I was diagnosed with Poli-Dermatomyositis. Then at least I knew I wasn’t a hypochondriac and the pain and exhaustion was real. Still my husband, friends, colleagues did not believe as you don’t have a splint, scar, wheelchair or anything to confirm your invisible disease.

    Finally I went on a fruit-bread only diet for 5 years for my colon, not knowing just how much I would benefit from it. Today I am much better although I have to control what I do. Now I take care of my Mom (83) and my husband after a quintuple bypass (3 years ago) and a heart attack (2 months ago). I have much understanding of Mom’s pain and husband’s severe fatigue.

    I still have relapses but I thank God for good food and grace. Thank you for your blog and to the others out there – check your diet (raw foods as far as possible), always believe in tomorrow, see every day as a challenge (not a problem) which can be hard, fill your mind with beautiful things, go out in the sunshine and nature, sit/lie under a tree and watch the living things – ants to birds etc.

    I pray for you all. May you also one day have your energy, health and better days back. In the meantime I hope more people will read and try to understand.

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    1. It’s so encouraging, Rika, to hear from somebody like you who can say “it’s much better now”. And excellent reminders for coping with chronic exhaustion – and not just for patients but for everybody! PS a “fruit-bread only diet”? I’m not familiar with that…

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  8. Hello, I was wondering if you also have a conversation for people living with heart attack survivors. About the last week of June 2013, my husband had a heart attack. This was a little under a year after my Mother died of heart failure. I, naively, thought we’d make it through this but things are really bad.

    I only guessed that some of the fighting was coming from exhaustion/fatigue because I have known him so long. If he doesn’t get that nap – all hell will break lose. Our lives have become one march from Sunday to Sunday. Cardio rehab, lunch, naps, grocery store, supper, to bed… repeat. Very little if any room in his life for me or anybody else. Depression? Certainly. Fatigue? Absolutely. Divorce? I hope not.

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    1. DeDe, thank you for sharing your perspective. You have eloquently described an unfortunately common reality for many spouses of chronically ill people. You might be interested in reading this post called “Living With Heart Disease – and Your Whole Family“. And if you can find it (I think it’s out of print but may be available at your local library or used book shop), read Dr. Wayne Sotile’s excellent book called “Heart Illness & Intimacy”. For example, he writes: “…the patient may not be the only one profoundly affected by this diagnosis. Coping with a heart illness also involves spouses and other immediate family members dealing with an endless volley of stressors while trying to figure out how to resume a semblance of normal day-to-day life…” Best of luck to you…

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  9. Greetings,
    Boy, that is enlightening. Thank you for the information. Does that get any better at all? Does it ever go away?

    My husband, 45, had a heart attack 8 months ago, barely survived and is still recovering after a stent surgery and barely above heart failure. Doc said he’ll need a Ventricular Assist Device in the years to come if he doesn’t get healthier. He did cold turkey quit the bad smoking habit, but can’t lose weight and doctor is very vicious about it. We tried walking at around month 3 for about 2 months and he lost 3kg (I lost 6) but then he was hit by the fatigue again. He not only gave up walking, he gave up dieting and gained back those kilos and then some. I’ve been pressuring him to walk again, to no avail, and the irony is that it’s a 150+ person begging a 100 kilos one for action/losing weight while it was the other way around 15 years in a row.

    He is too tired all day yet too energized at night; he gets like a 4-5 hour nap in the afternoon and 3-4 hours per night and he’s up by 6. He’s stubborn, stupid and proud and tries to go on as he used to but fails miserably. He’s unemployed, literally sitting his ass in a chair in front of the computer playing online chess, watching movies, and moping around the house all day, with only doing dishes, taking garbage out and cleaning the pet’s pen as his responsibility, those being neglected too lately. He misses doctor appointments, misses test appointments or any outdoor errands, blaming fatigue all the time.

    I don’t know for the life of me what to do with him. I don’t know if it’s depression causing the fatigue or the other way around, and whether to press or bully him in chores or walking. I believe that the more he stays at home and mope around, the more lazy his heart will become and the worse it would get, but I’m afraid to press him any further and whenever I search on the net about it the information is scarce. Of course he’s too embarrassed and proud to admit anything to his doctor when he visits, and I’m banned on tagging along because I’ll tell on him.
    😛

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    1. Valena, I can only imagine how maddeningly frustrating this must be for you. I’m not a physician so cannot comment on your husband’s specific circumstances, but I can tell you that it is not surprising at all that a person who feels as bad as your husband does might be depressed and fatigued. It’s a miracle he was able to quit smoking – that is an amazing accomplishment in itself.

      As I’m sure you’ve already noticed, “bullying” him about what he should do or not do isn’t working. We don’t make changes because others tell us what we need to change – that motivation can only come from within. You may be banned from accompanying him to doctor visits, but can you speak to his doctor about your concerns? Ask specifically for a physician referrals to a trained therapist and to a supervised cardiac rehab program. And meanwhile, although you are very worried about his health, remember that you have control only over your own behaviour – not his. Try to live the healthiest life YOU can (especially around cooking – as they say, “you lose weight in the kitchen and get fit in the gym”) and invite him politely to join you when appropriate for brief healthy outings. Best of luck to you…

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    2. Dear Valena,
      You cannot do much but to support him positively. You can suggest some things or phone the doctor and tell on him. In the end he is the one to make the decision on living better. Fatigue is a terrible thing which few people understand. But do not let him “bully” you. They don’t mean it but it does happen. Take a stand and let him do things for himself – assist him but do not baby him – you will not survive. Have empathy and support but you cannot live his life for him. Love him, don’t spoil him into becoming a brat. Take careful notes, be aware of his physical and mental state – but also yours. Good luck.

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  10. I have had severe fatigue since my heart attack and heart surgery to replace my mitral valve. Nothing helps me but a nap, and it needs to be uninterrupted sleep of a couple hours. I am 10 months post-op and just want my life back! Will that ever happen???

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    1. Hi Luanne! I’d check with your cardiologist if I were you, just to rule out any cardiac reason for your unusual fatigue. Many of us, however, do live with the kind of fatigue you describe. Best of luck to you….

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  11. Had my first and, I hope, last heart attack two weeks ago. I am 54, not overweight (lost 15 lbs last year), active, eat well, healthy cholesterol #s. Yup I’m the last person you’d guess would have a heart attack but I did. Had a heart cath and stent placed 13 days ago.

    No one warned me about this fatigue. It wasn’t uncommon for me BHA to hit a wall in the afternoon, but a 15 minute power nap and I’m gold. Not anymore! Now I’m okay until the afternoon but then I’m noodled. Just can’t do anything.

    Thanks for posting this because I wasn’t finding a reason anywhere else. Any chance I’ll get some energy back? Any ideas on when?

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    1. Hi Teri – you are in very early days still. This kind of ‘hitting the wall’ exhaustion often comes as a shocking surprise to freshly-diagnosed heart patients. For an explanation, see also: Why Taking a Shower Is So Exhausting for Heart Attack Survivors

      And YES you will get some energy back over time – if your doctor has not yet referred to a supervised cardiac rehabilitation program, insist on a referral. Best of luck to you…

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  12. Thank you for this resource. I’m just at the beginning of being treated for (strongly suspected) heart failure. Almost diagnostic is that the medication regime is working. Fatigue is, of course, a prevalent effect of the medication. I’m having to use my very elementary training in health psychology from my undergraduate days in order to find things out – I’m in Finland and (contrary to what the world gets to hear about this place) things are not great here. I screenshotted the stuff that Kelly send you, since it seems a good list of ideas and would fit nicely on my phone.

    The Spoon Theory thing … not actually a theory in the sense we know theory to be BUT it is probably a very useful metaphor for one’s available energy budget.

    Once again, thank you.

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  13. Carolyn,
    Thank you, thank you for all this information. I thought I was going crazy. I had a heart attack in December 2014 and the blockage could not be stented. I have been exhausted ever since. On the days I work, I am in bed right after dinner. Days I do not work, I take 2-3 hour naps and still have to go to bed early. I am behind in every aspect of my life and am spending much less time with my precious grandchildren. I was very healthy before this “stress-induced heart attack” at 52. Please, please tell me this is not how I will feel the rest of my life.

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    1. Becky, I can’t tell you with 100% certainty how long you’ll feel this way, but what I can tell you is that there may be some effective ways to address this fatigue. I don’t think I felt anything like “myself” for a full year following my heart attack. First, tell your physician that this is a quality of life issue and needs to be addressed immediately. Ask for a medication review; some of the meds you’re taking may be contributing to this fatigue and can be changed/reduced. You might also be depressed (not an uncommon reality for heart patients) – depression is exhausting. You might also want to ask about getting a sleep study done (many heart patients have undiagnosed sleep apnea). Something non-heart-related may be contributing to your fatigue – ask your doctor to help figure this out with you.

      Meanwhile, hot weather can also play havoc with our fatigue – stay cool! If possible, see if you can reduce your work hours, at least temporarily. Follow the tips in this post as much as you can. Lastly, this sounds counter-productive, but try to get a good walk or yoga stretches in every day to balance that crushing fatigue with moving your body in a healthy way. Best of luck to you…

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  15. Wow, I’m late to the game reading this article. I have congestive heart failure and the exhaustion is excruciating.

    Worse, my heart failure is caused from pregnancy so here I am, with 2 small kids to care for, and I can’t get out of my own way.

    You’re so right. This is NOT the same as what others call “being tired” or even “exhausted” – this is a beast you can’t fathom unless it strikes you. 😦

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    1. Hi Carrie and thanks for sharing your experience here. I can’t imagine living with this “excruciating” fatigue while also PREGNANT and caring for 2 LITTLE KIDS!! I sure hope you are able to get some help from others during this exhausting time. I agree – until we actually experience this kind of crushing fatigue, it’s impossible to fathom how debilitating it can feel. Best of luck to you…

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    2. Wow – your comment really made me think. I had my heart attack last October and also struggle with fatigue intermittently. Some days I’m full of energy, others I’m wakkowed from start to finish BUT I am retired. I cannot imagine how I would cope with young children to care for. I don’t know how old your children are but I do remember a wonderful game my daughter used to like playing. She would pretend she was my maid and do the tidying up and dusting – if you’ve got boys perhaps playing a butler would do as well.

      Failing that – prioritize – a bit of dirt is good for the immune system & who cares if things are untidy!

      I wish you the very best of luck. Above all, enjoy your little ones – they really don’t stay that way for long.

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      1. I love that “maid” game you and your daughter used to play, Anna. Never too young to get little ones to tidy up. It’s interesting how fatigue can be so intermittent (and thank goodness when it is, so we get a wee dose of normalcy in between!)

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  16. This fatigue thing has really gotten my attention now! I have had issues with sleep problems since I was in my twenties but have always been able to pick up more than my share of the load literally and figuratively.

    Now at age 80, I find getting up to start the day is more than difficult. I try to maintain a fairly regular bedtime, around 11:00 pm. I usually go to sleep within a half an hour. Then awaken after 2 to 3 hours sleep to urinate. Then it is a crap shoot to see when I go back to sleep. Then after another 2 to 3 hours of sleep, I awaken. I take care of the dog’s needs and take my meds and insulin and eat breakfast. Back to bed for another 2 to 3 hour nap. Even so I feel very sluggish, and doze off to sleep again.

    I have several health issues. Mild COPD, type 2 diabetes requiring insulin, CHF, multiple joint replacements, and two years ago I underwent spinal fusion of L3,4,5, and S1. Each of of the surgeries had its complications of varying severity but the back surgery involved an episode of anaphylactic shock due to an allergy to dilaudid. Each of these surgeries was an attempt to remain more capable of caring for myself.

    As a matter of fact that is almost all I can do. Back spasms are incapacitating and that interferes with much in the way of exercising. I feel as though no one believes the degree of tiredness I experience. There is a sort of intimation that I would be cured of my problems if I got up and moved more! And if I wasn’t depressed. Well, darn it all anyway! I am depressed. As for moving: after one or two pm, I do get some chores accomplished. I recognize that I am my own worst enemy in many ways. But what shall I do about the fatigue.

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    1. Hello Ann – your first sentence leaped out at me: “I have had issues with sleep problems since I was in my twenties…” which likely means sleep has been a problem long before your chronic illness diagnoses (which only make fatigue and sleep problems worse even if they don’t directly cause them). I hope that some of Kelly Young’s list of tips (in this article) might help you, and if not, please ask your doctor for referral to a sleep study. Best of luck…

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  17. Carolyn,

    I’ve just located your blog today, and I can’t wait to read the other articles. ~^_^~

    I’m living in Halifax, and I have a diagnosis of Ebstien’s Anomaly (severe range) and Wolff-Parkinson-White syndrome (unsuccessful ablation). Your article on fatigue, to me, is the most ironic first entry to read.

    This fatigue has been a part of my life since a very young age. Until my diagnosis at 12 (I’m now 32) due to a rather scary passing-out event with one of a series of unsympathetic gym teachers, I’ve struggled with this bone-gnawing exhaustion.

    It’s very difficult to not relent to the additional feeling of depression and uselessness heap additional mental health scars to your already long list of health concerns. It hurts a great deal, I’m sure, especially if you’ve experienced a life of being ‘able’ then rather suddenly, unable. Very few heart ‘traumas’ leave visible marks on the body, and very few people, be it your social circles or your job, will expect nothing less (and usually more) than they would of an average, healthy human. It often breeds feelings of strong disappointment in oneself and being ‘left out’ or ‘sold short’ in life and loads of ‘Why can’t I do this?’.

    I find my body responds quite ‘loudly’ to any of these feelings. (they say depression hurts…hooo boy…) Do you find anyone else with these responses?

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    1. Hello Shara and welcome to my site. You are so right – most ‘heart traumas’ are invisible to others. I often think it would be ever-so-handy if I wore a neck brace or a leg cast or some other type of clear signal to those around us, as I wrote about here a few months ago for National Invisible Illness Awareness Week – did you know there was such a thing?

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  18. Thank you for posting this. I just went through a period of major fatigue following a couple of driving trips…it is difficult to explain that this is not just being tired, this is bone crushing, can’t get out of the chair fatigue….and it seems to take a long time to leave. Not sure all the tips work for me but I have used some of them.

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    1. Hi Judy – I just read your blog account of your 400 mile drive even though you’d been feeling sick. What were you thinking, girl? Well, you were likely thinking how great it would be to spend Thanksgiving dinner with family – which turned out to be true, right?! But it’s always a trade-off. Sometimes, I’ll say YES to something I really want to do if it involves those I really want to be with – even though I KNOW what the resulting consequences will be. Sometimes it’s worth it – other times, not so much, which is why it’s important to be able to assess that risk/benefit ratio ahead of time! (PS I love that photo of your new screen door/gate!)

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  19. I have to comment on the list of 25 tips from Ms Young, Carolyn. I think some are very misguided and conflicting. “Budget energy” and “balance rest and activity” can’t be compatible with “go till you collapse” and “caffeine”. And the latter two aren’t good for you no matter what your health diagnosis. Not knocking the daily cup or so of coffee, but advising caffeine as a fix for this type of fatigue is a joke, I hope.

    When I experience this debilitating fatigue I can’t and don’t want to be planning what I will do when I feel better, I am just trying to remember that this is not for always and I have to accept it in the moment. I think there are many other tips in this list that are helpful and I was glad to see you address the topic. I could never have believed that I could have random and sudden episodes of exhaustion so severe that I sit in the truck in the driveway and cry because I am too tired to get out and go in the house.

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    1. Thanks for your input here, Lauren. Your description of sitting in your driveway crying because you’re too tired to get out of your vehicle sure rings a bell for me, too. I know I have pushed the limits when I find that I’m both crying and shaking at the same time.

      Kelly’s list came from a number of different readers living with the crushing fatigue of rheumatoid arthritis, hence her broad range of suggestions. At one time or another, I’ve tried pretty well each option myself – yes, especially caffeine! I would not personally advise others: “Go til you collapse”, but I have to admit I have certainly done that a number of times depending on circumstances, as many patients do, and then always paid a big price for it after the fact. That’s what leads to sitting in the driveway crying, doesn’t it?

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  20. I haven’t had a heart attack (fingers crossed) but I know all too well what that profound, unrelenting fatigue feels like—– for 15 years—- from Lyme disease but it doesn’t matter what condition or disease causes it.

    Here’s what helps me be kind(er) to myself and, perhaps, to show to friends and family who just can’t understand: Christine Miserandino’s essay The Spoon Theory.

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    1. Thanks, Cave, for that link to the Spoon Theory. It’s a must-read, especially for our family or friends who have never experienced the kind of fatigue we’re talking about here – no matter what our diagnosis, as you say.

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