Fatigue vs. Being Tired: What’s the Difference? – by Ashley Boynes-Shuck

To put it simply: being tired is NOT the same thing as having fatigue. The type of fatigue that comes along with chronic illness and autoimmune diseases is unlike any other kind of exhaustion that most healthy people will experience in their lives.

As an “e-patient” and an online advocate for people with rheumatic and other chronic illnesses, I’ve heard many descriptions of the type of pain and fatigue that comes with these types of conditions. When it comes to fatigue, the following are just some examples of how most rheum patients describe it:

  • Coma-like
  • The kind of tired that makes you want to cry
  • Drowsy, almost feeling drugged
  • Like the fatigue from the flu, but worse
  • Painfully tired
  • Wholistic exhaustion (feeling fatigued on the whole: mind, body, spirit.)
  • Being scary-tired
  • Inhumanly tired
  • Zombie-like
  • The whole body feels weighted down
  • Living life through a fog or haze
  • … and so on.

Does this sound like your average tiredness or exhaustion? Didn’t think so.

The crazy thing about fatigue is that it doesn’t matter how much sleep you get, and it sometimes doesn’t even matter the quality of sleep you get. This type of “tired” (for lack of a better term) is bone-deep … you feel it at almost the cellular level, and nothing can shake it. 

I personally have tried it all: B12 injections, other vitamins and supplements, tea, coffee, chocolate, more sleep, less sleep, exercise, acupuncture, energy drinks, juice fasts, and so on. It’s worth noting that regular exercise and a one-day juice cleanse here and there have been the only things that have steadily increased my energy levels, and that even in my periods of disease remission, fatigue is always a part of these illnesses that linger, even when the pain is gone.

I’m not sure that many people would “get it” until they “get it.” This type of fatigue is debilitating, and, for many patients with RA, lupus, sjogrens, ankylosing spondylitis, and similar illnesses, it is sometimes the worst part. The lack of energy to do things (that should be simple) can be maddeningly frustrating. 

Unfortunately, there aren’t many medications or holistic remedies out there that help with the fatigue issue. However, everyone’s body is different, and what works for some may not work for others and vice versa. Most doctors will say to do what you can (within reason!) to manage fatigue. But like everything, caffeine and the like should only be used in moderation.

I would love to hear what your fatigue solutions are — and how you would describe the fatigue monster!

Be Well,

Ashley Boynes-Shuck

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17 thoughts on “Fatigue vs. Being Tired: What’s the Difference? – by Ashley Boynes-Shuck

  1. Thank you for.sharing. I too am an ambassador with af, and have severe fatigue. I have ra and lupus, among many…. it is nice to always hear others talk about the effects of these diseases… from a hands on perspective.

  2. If you are taking high doses of calcium or other vitamins, this IS part of the problem.. Go back to the fifties and sixties to research the vitamin code then. I have deficiency in thyroid. It causes this type of fatigue. Have your thyroid checked. But GET A SECOND CHECK DONE. Not all labs are efficient!!!

  3. I’ve been recently diagnosed with endometriosis and had surgery but I feel the op has done nothing for me. It’s soooooo tough as I just want to feel energised and happy, and I do my very best to be that way and be mentally positive, but it’s so hard when you feel and are falling to sleep all of the time. I have extreme fatigue no matter what I do or don’t do. I’m constantly trying new remedies and therapies which can ease my other symptoms but I’m still left with this huge cloud of fatigue over me. My friends and family joke about it as ‘I’m always tired’ but it really upsets me deep down as I desperately wish I wasn’t so fatigued all the time. It makes everything feel like climbing a mountain! I hope to find an end to this one day but until then I will remain positive and spread the word so as others may understand this more.

  4. I would describe this fatigue as if I am at the end of an evening of fairly heavy drinking, I can’t think straight, I can’t get my words out properly and my body doesn’t co-ordinate very well. Unfortunately this is all before I have even had one drink!

  5. Fatigue is like wearing a lead suit and walking through mud! everything is heavy and such an effort, no matter what time of day….I wake up feeling like this, I go to bed feeling like this and when I cant sleep because of my fatigue I feel like this

    • Good description, Michelle Bennett. I also have described it as gravity pulling me into the ground. I have lived with this for over 20 years. I have epstein barr virus, fibromyalgia and RSD. I also have severe insomnia and can not nap at all during the day no matter how bad my night has been. I wish every day that I find some sort of treatment to feel better.

  6. I would describe it as my body literally shutting down on me – I frequently have to pull over when driving for a power nap to stop myself nodding off – I am powerless against it. If I am at home I will lie down for a nap – without an alarm this will last 2-3 hours :(
    I recently read an article about histamine food intolerance which rang lots of bells – since then I have taken daily antihistamine which has made a massive improvement – perhaps why I always suffer more in the winter as I’m not expecting hay fever?

  7. I have the most severe fibromyalgia any doctor who has treated me has ever seen. I also have Sjogren’s Disease, and am in the process of seeing specialists for three more suspected autoimmune disorders. My rheumatologist tells me that virtually every Sjogren’s patient describes her or his fatigue as I do…the sensation that my head, arms, and legs are so heavy that I will sink through the earth. It is not exhaustion. It is bone deep.

    The only relief I receive is from taking a liquid mineral supplement. It is not a cure but does give me a bit of a boost which lasts for a few hours. I don’t know which of its ingredients to hold responsible for this, but recommend it for anyone with chronic, debilitating fatigue.

    By the way, the fatigue is cellular. Autoimmune issues impact us at the cellular level.

  8. I have psoriatic arthritis and the fatigue is almost constantly overwhelming! I’m tired of being tired all the time! :(

  9. I have Psoriatic Arthritis, fibromyalgia (which was diagnosed nearly a decade before the PsA set in) and chronic anemia as I do not absorb iron. I describe it to others as jet lag after a 15 hour international flight while infected with the flu…except I rarely go anywhere and don’t have the flu. Even watching TV wears me out.

  10. everyone here should get tested for lyme. i had a lot of these ‘diseases’ that are mentioned here and tested positive for lyme after 8 years of feeling horrible. just a thought. get an igenex test or a blood culture test, all the rest have HIGH false negative tests.

    • “Diseases” implies that you don’t believe that what we have is real. And by the way, you can be seronegative and still have autoimmune arthritis.

  11. It is a feeling that your body is very heavy like walking in water. This fatigue is unfightable. You can do things when you’re tired, but whey you have fatigue your body will eventually just say “no!”

    Keeping a regular schedule helps and when I have to change my schedule I must schedule a rest day. This is so hard for people without fatigue to understand.

  12. My fatigue monster description is:
    like wading through chest-deep water
    like dragging yourself out of water after swimming far, far too long

    I have tried pretty much everything out there too. The only thing that makes me feel “better” is more sleep. I never wake rested, but I feel better for having slept. I tend to listen to my body and sleep when it wants to, not when I think I should.

    Over the last several years I have learned the hard way that no matter how I try (more sleep, less sleep, only sleep certain hours, only sleep x many hours at a time), I inevitably end up back in my usual cycle. That cycle lets me sleep “regular” hours for a few weeks, then I’m back at sleeping during the day more than not, up several days (usually from painsomnia), then cannot sleep or stay awake for several days. Rinse, repeat.

    Shannon @ LivingwithFibromyalgia.ca

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