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Thread: Fatigue: my new demon

  1. #1

    Fatigue: my new demon

    Some of you may have followed my other posts, but I've gone through the ringer the past 18 months (relative to my situation of course):


    • Poorly healed pressure sore abscessed all the way to my ischium over the course of 4 months
    • Sore busted open March 2017 with exposed nerve and bone
    • Went septic 5 times total
    • 12 months of IV antibiotics
    • First flap surgery 05/17 (~3 months in bed) surgeon didn't resect enough infected pelvis
    • 45 days after discharge wound busted open again, by the time I found a good medical team half my pelvis was infected with MRSA (had to drop out of medical school)
    • Second flap surgery 12/17 which involved hemipelvectomy (left side) and amputation all the way to what used to be my hip (another ~3 months in bed)
    • Recurrent ESBL Klebsiella UTI requiring 6 months of daily irrigation with antibiotics after discharge in February (just finished last week, very scared it might come back)
    • New sores that formed even with custom molded cushion (now everything is FINALLY healed because I got a custom molded backrest which was needed to seat me correctly)
    • Unbearable nerve pain that increased in intensity after my recent round of surgeries (I was very close to taking my life because of it)


    I got back with a pain clinic and I was failing everything. Buprenorphine made me a zombie and didn't help, 50mcg Fentanyl patch made me sweat, made my heart race, and would help for 2 days before the pain would come back, etc, etc. I finally found relief with Methadone 10mg BID in combination with Trileptal and Nucynta for breakthru. I still have terrible days, but it pulled me out of the torturous pain and depression that had me on the brink of suicide. Nonetheless, I am fatigued ALL THE TIME now.

    My neurologist said he doesn't really have an answer. Of course, it can be the meds (I seem to be very sensitive to meds), or it could just be neurological dysfunction. His explanation was "Your body and CNS have to work extra hard day-to-day to do simple tasks," which seems like a very basic way to explain things, but I guess that may be it. Fatigue is quite common with neurological dysfunction from MS, and it seems through my quick research that it can affect the SCI community as well.

    I thought it was possibly a habit and formed from a combination of extended hospitalization (weird hours of poor sleep), and not having anything like school to keep me on a schedule, but if I think back to other times in my life, especially before my injury, I was never like this. Maybe almost 7 years post SCI is catching up to me. I really hate this though; if I go to bed at midnight (for example last night), I easily slept until 1PM today! It makes me feel worthless and a waste.

    My neurologist prescribed me Modafinil. I hate that I'm going to have to throw yet another medication into the mix. I was never a medication person prior to my injury, and now the increased amounts of pharmaceuticals make me so hesitant. I know they all serve a purpose, but I still dislike them. Either way, on August 21 I restart my second year of medical school. I hope I can make it through and get back to the gung-ho state I was in only 18 months ago.

    I met with my Dean the other day, and told him I somewhat feel like the wind in my sails was deflated a bit. I'm coming back, but I'm not as excited as I was when I first started school, after everything that's happened recently and how it's changed me. He did say that I seemed much quieter and not as outgoing as he remembered me less than a year ago. SCI changes you the more it beats you down, I guess.
    Last edited by paraparajumper; 07-22-2018 at 08:56 PM.

  2. #2
    Methadone I get, tapentadol I get, but is oxcarbazepine really prescribed for pain? That's an antiepileptic drug that has fairly significant side effects, and one of the most common side effects is fatigue. If you've got seizures or depression/bipolar disorder/schizophrenia and oxcarbazepine is being used for something else that's one thing, I've just never heard of it being used for pain, but what do I know... I just googled it and it's used off label for neuropathic pain.

    I'd bet dollars to donuts that your neurologist started the Trileptal. You know the saying "if all you have is a hammer everything looks like a nail"... well neurologists have a toolbox full of antiepilepileptic hammers, and I wonder if that made you look like an appropriate nail. Though I imagine if you've made it to methadone, tapentadol and been through fentanyl and buprenorphine you've probably been through most of the drugs for neuropathic pain on the way there.

    The opioids are going to make practicing medicine inconvenient. I'm pretty sure you can practice while taking opioids (obviously prescribed ones), but in your future you're going to get drug tested a dozen or two times in the next 6-8 years and you're going to have to explain why you're positive for opioids each time.

    I've taken modafinil before (got it prescribed for "shift work sleep disorder" one of the FDA indications). I routinely have to work 32 hours or so in a row, with an overnight period where I might theoretically get some sleep, but generally during which the phone is constantly ringing and I have to do stuff all night. For me modafinil doesn't particularly "feel" like anything, I don't get how it could possibly be abuseable, there's none of the the euphoric high I hear you get with traditional stimulants. For me it just kind of keeps you awake for an extended period of time. Even 100 mg (probably half what you were prescribed) won't really make me feel more alert or like I have more energy, but it will definitely make it impossible for me to sleep for at least 20 hours. I'm not a fan, I'd rather just have a cup of coffee or down a caffeine pill (because I'm not a big fan of coffee it turns out, and it weirds me out a little that I can smell the coffee in my piss afterwards). Might as well try it, I don't think it's likely to cause problems for you, but then that's the third controlled substance you're taking (though it shouldn't show up on the routine drug tests you'll have to endure through residency at the least).

  3. #3
    Quote Originally Posted by funklab View Post
    I'd bet dollars to donuts that your neurologist started the Trileptal. You know the saying "if all you have is a hammer everything looks like a nail"... well neurologists have a toolbox full of antiepilepileptic hammers, and I wonder if that made you look like an appropriate nail. Though I imagine if you've made it to methadone, tapentadol and been through fentanyl and buprenorphine you've probably been through most of the drugs for neuropathic pain on the way there.
    Correct. Similar mechanism of action, but I've tried and failed the first line defenses: gabapentin, pregabalin, tegretol, nortriptyline, amitriptyline. Oxcarbazepine is a cousin of tegretol but supposedly with less side effects. My neurologist bumped me up from 150mg to 300mg BID during my last visit when he prescribed the modafinil, because I seem to be tolerating it better than the other meds. It's really hard for me to pinpoint what may be causing the fatigue, especially with multiple variables introduced.

    Quote Originally Posted by funklab View Post
    The opioids are going to make practicing medicine inconvenient. I'm pretty sure you can practice while taking opioids (obviously prescribed ones), but in your future you're going to get drug tested a dozen or two times in the next 6-8 years and you're going to have to explain why you're positive for opioids each time.
    Yea, possibly. I'm fairly close to my dean (I guess as close as a student can be with one), and have spoken at length about my health, the drugs I take, etc. The school is pretty welcoming and has been there for me through it all, so I'm not all that worried.

  4. #4
    My Dad also has had trouble with fatigue. For him, it was due to a combination of sleep apnea (this improved with treatment), his pain/neuro-active medications, having a neurologic injury that makes everything you do exhausting, traumatic brain injury, and probably some other of his medical problems.

    First, you need to get yourself onto a regular sleeping schedule, and be sure you are getting restful sleep. Try to avoid too much caffeine or alcohol. And if there is any chance you have sleep apnea, ask for a sleep study.

    My Dad was also started on modafinil. It helps him a lot. It doesn't feel like a high at all. It helps keep him awake. He'd rather take it than not.

  5. #5
    Consider getting your testosterone level checked
    chronic use of opiates for pain can reduce testosterone level
    are you on an antidepressant? Fatigue can be a by product of depression.

    pbr
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  6. #6
    Quote Originally Posted by SCI-Nurse View Post
    Consider getting your testosterone level checked
    chronic use of opiates for pain can reduce testosterone level
    are you on an antidepressant? Fatigue can be a by product of depression.

    pbr
    Hi pbr,

    I met with an endocrinologist in June to try and pinpoint this and all labs came out normal. I was also told fatigue is not actually a sign of low testosterone, that's just more of a myth that's been propagated. I'm not on any antidepressants and don't feel depressed.

  7. #7
    I guess if things get worse with the increased dose of oxcarbazepine it will help rule that in as the cause of fatigue.

    Otherwise I imagine you're probably fairly out of shape after several months of bedrest not so long ago. Getting as much exercise as you can manage is going to be important regardless of whether or not deconditioning is the cause of your fatigue.

    OSA is another really good thought as hlh suggested. If anyone has ever said you snored or you're a bit overweight (what am I saying, you're in med school you know the risk factors and signs of OSA) you should see if you can get a sleep study.

    I'm sure your endocrinologist checked everything, but just in case I'd make sure all the following have been done
    CBC with diff (rule out current infection and anemia)
    Iron studies if Hct is even a little low
    CMP to rule out renal and liver issues as well as check on sodium level
    ESR or CRP aren't very specific but they might help point to some cause of inflammation
    Testosterone is a reasonable thing to check as well, even if it's not causing your fatigue persay it can certainly contribute to indecision (if that is playing any role in you staying in bed for so long, not sure if this is the case or not)
    Rhematologic labs would be more of a last resort, but an ANA or RF would be reasonable if most everything else has been ruled out, especially if your inflammatory markers are up

  8. #8
    Don't give up!! Have you considered a Physical Therapist or Occupational Therapist evaluation specifically to develop a daily exercise program for yourself. After all you have been through it's no wonder you are fatigued. I really wonder if it's a matter of re-conditioning yourself, starting with a short daily program and working up to more of a work-out so you can handle your school program as you did before.
    If you don't want this route, how about checking out a gym, but then I would suggest that a PT or OT may be able to design a program based on your physical situation, that you could follow at home or in a gym.
    Be prepared for it to take longer than you may think to get back to your own energy level, but you can do it.

  9. #9
    Quote Originally Posted by funklab View Post
    I guess if things get worse with the increased dose of oxcarbazepine it will help rule that in as the cause of fatigue.

    Otherwise I imagine you're probably fairly out of shape after several months of bedrest not so long ago. Getting as much exercise as you can manage is going to be important regardless of whether or not deconditioning is the cause of your fatigue.
    Cardio wise, definitely out of shape, but I've been weight lifting consistently since I was about 15 years old (one thing I'll never give up). Lost about 15lbs on some lifts while I was in the hospital, but I was doing pull-ups in bed on the transfer bar and resistant band stuff, and I was back in the gym the first week discharged. I am what you consider "jacked" lol. A lot of what you listed I had tested, but I will work my way down the list. Nutrition is on point too (count my macros most days, and had my RMR tested not too long ago out of interest; quite a bit lower than pre-injury I bet but wish I had numbers to compare it to). Thank you. Are you an MD?

    Quote Originally Posted by triumph View Post
    Be prepared for it to take longer than you may think to get back to your own energy level, but you can do it.
    Thank you. As you and funklab mentioned, maybe resistance training is not enough, even though it's my favorite, and I should start introducing some cardio..

  10. #10
    Last suggestion is to have your primary care provider or pharmacist review all your medications and see what could be contributing to fatigue

    agree with above about a cardiac review
    Keep track of all your symptoms and changes- and update your providers -
    keep us posted

    pbr
    Last edited by SCI-Nurse; 07-23-2018 at 12:00 PM.
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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