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

Let’s talk fatigue.

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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Tina

OMG, insomnia has been my life since forever. I am 63 years old and I just found out a little bit ago that I have msk I’m trying to research and read as much as I can about it and now my life makes sense because I always had urinary infections as a child I was always sick and I continue to have them all the time as an adult Amazon daily antibiotics but they told me it was because of my MS which was diagnosed in 1987 and I’ve also been told that is where the fatigue and the 24/7 searing, burning pain comes from. However, now I’m beginning to wonder because none of the MS meds I’ve been prescribed throughout the years has helped everything that is supposed to make me sleepy does the opposite in pain medication is not relieved anything. I was told in 2004 that I had hundreds of kidney stones in both my kidneys.
I passed several large stones in 2013 and had lithotripsy surgery then on both kidneys. I just had a ureteroscopy because of a 9 mm Stone that was blocking almost an inch and a half to 2-inch worth of stones backed up behind it and also just had surgery on my right kidney with plans to do the left kidney.
however, no one ever told me that I had medullary sponge kidney disease in both kidneys until recently. I was just told back then to avoid spinach and beets and was given no other direction.
this time I was just told that I needed to stop eating almonds and drinking almond milk I’ve been doing all the other research on my own. I was told that I again have Brazilian stones in both kidneys and if they had tried to take them all out in my ureter during the first surgery I would have been in surgery for 8 to 10 hours!
Any advice?
It is very confusing because some sites say that I should not eat certain foods because they are high in oxalates while other sites state that they are considered low in oxalates so I don’t know food is giving the proper information.

Tina

Forgive me for all the errors above. Accidentally hit send before I was able to finish editing it, and now I cannot edit it anymore.

It should have said, I’ve been on daily antibiotics for my urinary tract infections as a preventative measure almost my entire adult life, but it was always blamed on the MS, which I was diagnosed with in fall of 1987. Officially, after MRIs were taken in January of 88.

I don’t have Brazilian stones, it should have stated that I have a gazillion stones according to my urologist in both my kidneys. She told me I am what they call a storm former. I had never heard that description before.

In the end it doesn’t seem to matter where am I pain and insomnia are coming from because no one has been able to give me anything that will take away the pain or help me sleep.

And now with the opioid crisis, apparently my insurance company didn’t even want my doctors to give me sufficient pain relief after the surgeries.

Leeann

In order to try and prevent kidney stones, you must know the composition of them. Most common are calcium oxylate which you can follow a low oxylate diet for. However some stones are calcium phosphate, Uric acid or some combination. Unfortunately there’s not a whole lot dietary wise kne can do for calcium phosphate stones. Increase fluid intake, reduce sodium, reduce meat consumption, and dark colas I’ve heard are bad for any type of stone.

Sharon Hunt

I have had kidney stones since I was 18 when it took them 6 months and repeated trips to the ER to diagnose 2 stones. I have regularly passed and/or had surgery approx. every 2 years to remove stones…..I just turned 50 and I was finally diagnosed with MSK on January 31 of this year. But the last year and a half I’ve had 2 stone removal surgeries and countless CT’s & X-rays due to pain. I have been fighting insomnia for several years and in the last year have been fighting extreme exhaustion and fatigue. My Urologist & Nephrologist are wonderful but I still am trying to find a pain treatment that works for me. I have seriously thought multiple times over the last 2 years that maybe the fatigue, pain….everything was all in my head….Iam so thankful I have found this site. The pain is changing and sometimes I have good days and then I have really bad days where I barely can get out of the bed and I never know when the pain will start or the exhaustion will hit and it’s so hard to make plans and live a some what ‘normal’ life anymore. A lot of Dr’s have told me ‘a stone is not moving so there is no pain’….well…. That’s just total bullsh**!!! Sorry but I’m so tired of being told I should not be in any pain. I have a fairly high tolerance for pain because it’s something I just had to do over the many years of passing stones but the last 2 years have really become hard and the last 8 months have become even harder with the almost constant lower back/flank/groin pain and the never ending circle of insomnia/exhaustion and fatigue. I’m so glad I’m not alone in this new MSK world. Thank you!

Leeann

You are definitely not alone that’s for sure!! And the pain and exhaustion is so very real for many of us!
I started having stone issues at age 19. (1998). It wasn’t until end of 2015 that I finally got diagnosed with MSK. Like yourself, many doctors had me convinced up to time of diagnosis that the pain had to be all in my head and/or I was just displaying drug seeking behaviours. Even after diagnosis, many doctors, nurses, and other healthcare professionals (some of whom had been my co-workers for 15 years as I used to work as a registered nurse). accused me of not having as much pain as I was saying (isn’t pain very subjective?!). Or that it was impossible to have pain if I wasn’t actively passing a stone or obstructed by one. It took a long time to finally have my voice heard and believed! In fact it took like 3 years of trying various opioid medications, a couple different pain doctors, tried lidocaine infusions, before I finally found the best long acting pain med for me! The methadone took/takes care of the chronic pain quite well, but I still was struggling with breakthrough pain, especially after any type of activity, or when passing a stone of course. Last summer, I had to take dilaudid for breakthrough pain, up until I had a ureteroscopy in which they were able to remove and/or blast to very fine stone matter on the right side. My GP, and most specialist had this crazy notion that after that clean out, I’d be fine and could do without the dilaudid… but of course then my left side started acting up. Thankfully after much bouncing back and forth from GP to pain doctor to urologist, they finally agreed that this was going to be an ongoing fiasco for me and that in order to lead any kind of functional life, I need both medications. Because I’m on such strong/high doses of medications, people think that I’m “drugged” out of my mind, drowsy and spending my time sleeping and laying around. This couldn’t be more untrue… because my pain is better controlled, I don’t sleep nearly as much… good pain
control is paramount in leading a somewhat normal life.

Mepel

Reading this gives me encouragement I get so discouraged being so tired. I just found out I have one stone 23 mm and hoping things will changed when it’s removed maybe the tiredness will get better.
Thanks for this

JFB

Wow, I feel like crying reading this. I’ve been struggling with severe fatigue for years. I go to bed at 8pm every night, despite having young children. I feel I can barely care for them, and then feel like a horrible parent/ person. I need to rely on other people to help me. I would nap every day if I didn’t have a full-time job as well. Just exhausted all the time. Have had multiple medical tests done (thyroid, iron, etc.)- everything always comes out normal. So frustrating. I’m at this point I wish a test would uncover something. Anything, at least it could be treated and my fatigue would go away. I’m only 34 years old. The only thing I DO have is chronic kidney stone formation. I wasn’t aware that it could cause fatigue. Which is why I am so amazed at having found this page. Suddenly, things make sense. I’ve had doctors try telling me that depression or other mental issues might be the cause of the fatigue. However, I am convinced the fatigue and inability to lead a normal life are actually what are causing depression (not the other way around). Thank you, thank you, thank you!!

Leeann

Dealing with a chronic illness is exhausting in itself. Having a chronic condition that is rare, is very misunderstood, has little and outdated research makes it even more tiring IMO. If you have the chronic pain component, it magnifies the fatigue. Plus as Mary said, painsomnia is very real… when I’m having a flare up, I always end up dreaming about having pain and nobody will help me… it causes me to wake often during the night, so of course I’m more fatigued during the day.
And if we are tired, we should listen to our bodies… it’s trying to tell us we need the rest.
And you are soo right about the depression part.. having a chronic illness, with no cure and limited treatment options, will often cause depression and anxiety. Hang in there! You have a lot of support in your fellow spongies 😊

R P H

I’ve suffered severe bouts that hospitalized me at least 5 times. This last Stone was est to be 11-12 and was causing weeks of pain and not going anywhere fast.

With painkillers and flomax not working my Urologist was saying surgery was the only solution. But is wasn’t for me, I was afraid of side effects and lacked the best insurance to cover it.

I found a remedy that allowed my body to dissolve and pass a stone that was lodged for over a year that my doctor said I must have surgury to remove.

I have utilized it a second time as upon the first diagnosis of the x large stone there was already another in the kidney just waiting to drop. It is no fun crawling on your hands and knees into the hospital emergency room when your a 6’6” 245 lb male…

I hope to start trials on this treatment in 2018 and would like to contact Dr Nguyen.

Jessica

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

Marta

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..

Suzanne Abbott

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.