Index Support Center Forums Living with N Have N w/ cataplexy – but this is isn't Cataplexy-like

  • This topic has 10 replies, 7 voices, and was last updated 3 years, 1 month ago by Former User. This post has been viewed 664 times
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  • #1138
    AvatarOneSleepyDude
    Participant

    I’ve been experiencing increased / regular muscle fatigue – aside from cataplexy’s instantaneous short “hits and gone in mins” and it’s concerning me.

    Background – I’m 39/M in really decent shape physically, I eat a very balanced diet and stay very active, not really a workout guy but I love to Row on the machine and hike/bike/ski. I have Narcolepsy with Cataplexy – diagnosed 2.5 yrs ago. I am on Xyrem – 3.75-4.5mg 2x a night & the usual Ritalin & Adderall routine during the day. I do have to take Levothyroxine for my hypothyroid and testosterone – as that all thise #’s went down 2.5 yrs ago too.

    Recently, I find myself more and more with increased / extreme muscle fatigue, whether it is after carrying groceries in or loading up my car with stuff. Doesn’t have to be heavy lifting at work, but my muscles are really weak. After some rest it comes back and I have strength again…but it’s just like my strength is faded and arms/biceps are tired after carrying a 20# box from the car and placing it in the garage on a shelf.

    Anyone experience this? Thoughts? I’d love to get some discussion on it –
    OneSleepyDude

    #1140
    TheRabbitKingTheRabbitKing
    Keymaster

    It could be the stimmies. They’re notorious for crashing blood sugar, which might in turn deplete muscle glycogen. If you eat something like a cookie, can you tell a difference? It might have been confirmation bias, but when I was on adderall, on the days I took the full dose, it seemed like I could lift nearly as much for nearly as long, despite feeling more peppy. Also, do you have a recent free test count? Long term hormone therapy is known to sometimes lead to paradoxical effects, like the classic hypogonadism in steroid use.

    • This reply was modified 3 years, 2 months ago by TheRabbitKing.

    My current jam: Anathema - Springfield

    #1143
    AvatarOneSleepyDude
    Participant

    I take 10mg of my Ritalin in the AM, then a 10-20mg of Adderall w/ lunch early afternoon – not near the full dose of either – its just enough to keep me alert and avoid the crashing effect.

    As for the food/glucose I’ll have to go grab some Oreo’s and report back 🙂

    Muscles don’t really feel any different after lunch – but I do notice I crave sugar. Wenchell’s donuts…I’d eat 4 of ’em everyday if I could!

    • This reply was modified 3 years, 2 months ago by OneSleepyDude.
    #1164
    AvatarNatdoc
    Participant

    one sleepy dude
    If I may ask what muscles are involved?, How long does the weakness last? What makes it better and what makes it worse? Muscle weakness may have many causes ranging from something very minor such as dehydration or mils anemia to something more severe as in neurological disorders. Hypothyroidism is known to cause muscle weakness as is long term use of steroid therapy.
    You should mention this to your Neurologist at your visit.
    Also you should have a comprehensive panel of blood work if you have’nt already
    Best of luck

    #1182
    Narcoleptic NealNarcoleptic Neal
    Participant

    I have the same thing happen to me whenever I’m carrying things. If I ever have to walk or run a long distance my legs will just completely stop and start shaking.

    #1289
    AvatarWonderfulworld
    Participant

    How high is the shelf you place that box on? When I hold something as high as my shoulders – just for a few seconds – my arms get weak. If I take a box that has to be placed that high my arms will be shaking and feeling really strange – and I’m a farmer and used to carry heavy things all the time.

    #1350
    AvatarOneSleepyDude
    Participant

    Its any muscles that are used during an intense exertion, biceps carrying things, quads during a steep telemark ski descent. Crazy thing is its anytime I nees to exert real force on something that I’m weaker, and Im in good muscular shape.

    Yes, the box was heavy – probably >30 lbs the more I think of it. It had 4 gallons of water and 3, 500-sheet reams of paper. Shoulder / chest height lift to the shelf.

    As for labs drawn I had that some recently and all is good, T numbers in the 550 range if I recall.

    It’s just most exertions leave me feeling funny, weak and they really exacerbate my overall tiredness, just surprised my muscles don’t work like they used to…guess I need to bump up my workout routine – which seems to make me weaker still.

    #1358
    TheRabbitKingTheRabbitKing
    Keymaster

    I’m not a doctor of course, but that doesn’t sound like a neurological symptom, but rather like your muscles are just not storing enough energy. When I had muscle weakness on my left side due to neck nerve weirdness, it was more like my limbs didn’t want to obey me in the first place, rather than tiring quickly. I’d just keep an eye on it, and in the mean, time, try adjusting your diet. Can you pinpoint any dietary changes around when you started seeing these symptoms? Also, I’m jelly of that T level. Mine’s in the low 400s first thing in the morning and I imagine only gets worse as the day wears on. -_-

    My current jam: Anathema - Springfield

    #2788
    AvatarFormer User

    I get all those verions of muscle weakness and such too. After a plethora of testing the docs say it is all related to my cataplexy.

    #2808
    FerretFerret
    Moderator

    Well this thread has been an eye opener for me. I was trying to paint my outside walls and my legs were just shaking going up and down the ladder. I thought I was just getting too old to be doing that kind of stuff.
    I well remember trying to recover from both shoulders being “frozen” at the same time in my late thirties and getting no relief until I went to a Naturopath and she recommended a magnesium supplement. Pain gone and mobility returned in three months. So, after reading this thread, I went googling.
    https://www.bodybuilding.com/fun/peak32.htm

    Guess who’s starting with a magnesium supplement soon?

    #2815
    AvatarFormer User

    My cataplexy muscle issues feel different to me than my potassium/magnesium/calcium muscle spasms. The second feel more tight and painful whereas the first are more weakness and numb.
    What’s your experience?

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