A patient’s perspective: Dealing with Fatigue as an MSK Patient

Let’s talk fatigue.

Fatigue sign

More often than not, I’m completely exhausted. Even healthy people get tired at times, so they think they know what we mean when we say we’re exhausted. It’s when I have to nap for several hours a day that it becomes a problem. I can’t control it, and I never know when it’s going to happen. My body just shuts down and I have to go to bed. I literally can’t keep my eyes open, even if I’m in the middle of doing something. It’s like I have narcolepsy, but I don’t. At least, I’ve never been diagnosed with it because any time I bring all of this up with my doctors, it’s completely dismissed.

I do my best to fight it, and I set my alarm so I can wake up to take care of the things I need to during the day. I homeschool my daughter, so we have the flexibility to work around my symptoms and still get the work done. I know a lot of you have little ones or older kids in public school and can’t do that. Homeschooling isn’t for everyone for a variety of reasons, but it works for us.

The battle between needing to sleep and insomnia is real. Sometimes I can’t sleep because of painsomnia, a term we all know well. Other times, my brain just refuses to shut off and no matter what I do, sleep doesn’t come. After a couple of days like this, I’m operating in zombie mode until my body completely gives out again. I’ve tried everything over the counter I can think of over the years to help. One PA told me, “If you go to bed at the same time every night and get up at the same time every morning, your sleeping pattern will correct itself.” It sounds logical when you hear it, but it’s easier said than done when your body refuses to cooperate and you lay there staring at the ceiling for hours at a time, willing yourself to go to sleep. I can’t just lay awake in bed for hours on end. I have to get up and do something.

I’m as active as I can be without being overactive and putting myself in the hospital. I’m not depressed. I have a pretty good attitude about life, all things considered. I eat healthy. I take Vitamin D, B6, and Melatonin; all of which are supposed to help with sleep. Just like with the other OTC sleep medications, it’s hit or miss as to whether they work. I only drink one cup of coffee a day, and I either drink water or decaffeinated drinks for the rest of the day. I don’t take any prescribed medications that cause sleep issues. My thyroid and parathyroid have been checked multiple times and are fine, so none of that is the cause.

I think for me, this is just another one of the mysterious symptoms that I must work around, and I do find ways to work around it. When I need to sleep, I sleep. When I’m dealing with insomnia, I do my best to get things done around the house if I’m not in too much pain. Granted, I still have to rest multiple times because being too active ramps all of my symptoms up, but I do manage to make progress. I also spend time with my daughter if she isn’t sleeping, research or write, or just veg out with Netflix during these times.

As frustrating as it is, we have to learn how to take these trying times and turn them into something positive. If we don’t, MSK and everything that comes with it will drive us insane and I’m not going to let it do that to me. Although I will admit, it does get the better of me at times. I know those of you who work or have to follow set schedules have a much harder time than I do, and I really feel for you. What are your tips and tricks for dealing with fatigue?

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3 Responses to A patient’s perspective: Dealing with Fatigue as an MSK Patient

  1. Jessica says:

    I am a 42 year old female and I can completely relate. I passed my first kidney stone in my 20’s, just as described in the traits of this disease. One kidney stone a year changed to 2 a year, then 4 and this year has broken every record I had with myself. This year has been terrible for kidney stones. I have been hospitalized 3 times (3-5 days at a time), had surgery twice and also had hydronephrosis (both kidney and ureter were 5 times the size it should have been), but everything changed August 11, 2017. That was the day I passed a kidney stone…and then another, and, well, I still have yet to stop! I have currently passed just over 100 kidney stones and saved nearly all of them in case my doctor can help figure our what I should or should not be consuming/doing/etc. (even though I have had stones and urine analyze multiple times before). My record was passing nineteen stones in a single day. My urologist just called to inform me that I have left kidney hydronephrosis and a three mm stone that has just begun its long, excruciating journey down to my bladder. I have been cancelled on, turned away, shrugged at, lied to and even had a urologist that told me to take 2 calcium citrate and call him in a YEAR. What?! (It would have been hilarious if I wasn’t in so much agony). And then, 3 weeks ago I finally met with a second urologist and it was then that one of my CT scans was read properly and I was told I have MSK affecting both kidneys. I am in pain, or the fear of pain, every day; all day. I tell those closest to me that I think I have PTSD from passing these stones, when even the slightest twinge of pain now ignites fear, especially if I am out of the safety of my home. Yes, my social life is nearly nonexistent. I have passed my share of stones in public over the years and humiliating/mortifying doesn’t even begin to describe the helpless act of pain on display for all to see. I have some pain meds, but nothing completely cuts the pain, the tearing, the ripping and the enduring. Nor does it prevent the vomiting and nausea. I have been so sleep deprived from active pain, residual pain, or just a lingering pain (I was told that no kidney will hurt if it isn’t actively releasing a stone. I full heartedly disagree) that my family and I thought I had dementia or Alzheimer’s. I am still working on improving my memory.

    Often we look to instructors, nurses, doctors, and even the library and internet for answers, confident that an answer will be found. Now, however, my trust has been broken and with it my confidence, because even with the final diagnosis, there isn’t a person among those we are supposed to trust that UNDERSTAND what we have. If a provider of care cannot understand, then how are we supposed to fully understand, accept, treat and grow as part of that knowledge? It is difficult.

    I appreciate reading about fellow MSK survivors (because with what we endure, we truly ARE survivors!)! Thank you for taking the time to read about my story as well.

    Sincerely and Prayerfully,
    Jessica

  2. Marta says:

    I am in tears RIGHT NOW AND I’m shouting ‘YES!! I AM NORMAL!!! I HAVE THIS TOO..and sweetie its driving me & my family nuts!! I fall asleep sitting up..I lean over almost in my food..when I’m talking I fall out for only a moment at a time and I EVEN DREAM!! MY Husband gets mad and says You SHOULD SEE YOURSELF.. Sometimes he grabs me pulls me up saying Thats IT!! You are going to bed.. What in don’t get is..WHY I FIGHT IT.. WHY dont I just get up at 1-2am and go to bed.. Other times I can’t sleep for days..I’m sharing this and I’m READING TO MY FAMILY!!! DR’S Can’t figure me out either…Oh SWEETIE I’M SO SORRY..I KNOW THE MENTAL, EMOTIONAL PAIN ALONG WITH PHYSICAL.. Thank you for sharing!! The FIRST time I’ve seen this addressed!! Love and hugs..a MSK SISTER..

  3. Suzanne Abbott says:

    Thank you so much. This is exactly what my life is like, everyone thinks I do this to myself and I always know it isn’t a choice, it’s just what I deal with and I don’t understand it. Thank you for putting into words what I can’t explain.

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