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:
- 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
- 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!
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