autonomic neuropathy

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autonomic neuropathy
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    Community Voices

    Feeling lucky

    I have a handful of chronic Illness and I’m also a nurse. I recently went back to work part time after being out on medical leave for 10 months. It’s truly kicking my butt, but I’m so happy to be back. I got called bad ass and and inspiration, but In reality I just feel lucky. I’m one of the lucky ones who can still work, albeit part time but I’m working. I don’t feel deserving of being called these things. Yes, I have daily struggles but so doesn’t everyone.

    #ChronicIllness #TPN #EhlersDanlosSyndrome #Intestinal Dysmotility #AutonomicNeuropathy #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Nurse

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    Community Voices

    Nervous 😟

    <p>Nervous 😟</p>
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    Community Voices

    Neutra-Phos or PHOS-NaK

    Looking for anyone who has to take neutra-phos or PHOS-NaK supplements and has tricks to getting it down. It’s disgusting. It’s “fruit” flavored so I’ve tried mixing it in with everything I can think of from juices to yogurt and applesauce, even protein drinks. The flavor is so overpowering I can’t get it down without gagging. I’m supposed to be taking it 4 times per day. I’ve already tried pills (I didn’t absorb them) and I’m also on TPN with an extremely high amount of phosphorus (my body just wastes it) so it’s pretty much my only option. Any advice is welcome! SN: I’m allergic to citrus/pineapple, so OJ is out. #MultipleSclerosis #AutonomicDysfunction #Malabsorption #TPN #Portacath #AutonomicNeuropathy #AutoimmuneDisease #Gastroparesis #SmallFiberNeuropathy #PosturalOrthostaticTachycardiaSyndrome #FanconiSyndrome #OrthostaticHypotension #Hypoglycemia #hypophosphatemia

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    Community Voices

    If you have ehlers-danlos, you should probably read about disautonimia #AutonomicNeuropathy

    All. I put this out to the board at large...but I wish I had saved it in an editor so I could post it directly here.

    A LOT of us Zebras develop disautonimia (I did)

    And disautonimia can mimic just about everything.

    I can only give a link to the post.

    I highly recommend you get the book
    The Disautonimia Project

    My hEDS dr recommend it and it is better than the website.

    For all you folks with Fibromyalgia & Ehlers-danlos

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    Community Voices

    For all you folks with Fibromyalgia & Ehlers-danlos

    Ok I totally believe in Fibromyalgia. Its real and can be really hard to live with.

    I may have been misdiagnosed with it because I definitely have two disorders that doctors are barely aware of (kinda like Fibro was 10 years ago).
    I May even have FM on top of everything but almost all of the symptoms overlap so I just wanted to nention the disorders to you so you can make sure you dint also have them ir havent been misdiagnosed

    Things like exaustion, fibro fog, tender points, pretty much all of it.

    There are some different treatments and also different things you need to to keep things from worsening.

    Again. I totally believe that Fibro is real and legitimate. My hEDS doctor was just talking with me about how a lot of hEDS and Dysautonomia cases get i wanted to share that.

    For those of you with ehler-danlos....Disautonomia often develops in a really high percentage of Zebra's (people with eds).
    It us worth familiarizing your self with.

    Dr Spanos is an experienced practitioner and has started writing articles for patients. Non EDS specialists & EDS spectalists

    hEDS (ehler-danlos hypermobile)

    Disautonomia aka Autonomic Neuropathy

    They also have a book that is even better. My eds dr had me get it
    The Disautonomia Project guide for patients and physicians


    If you do think you may have these conditions...

    Under Community Resources
    The ehlers-danlos society has links to eds aware medical professionals and also online support groups in your area are a great source fir finding EDS doctors and EDS aware practitioners in your are (some drs dont know to register with the society so are not in the physician guide).
    I found my eds and disautonomia drs and PTs and pain specialists by going through local support groups.


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    Struggling tonight

    Having one of “those” nights... My sister, niece and I are taking a little mini vacation tomorrow - Sunday (No worries, we aren’t going anywhere around crowds or to any “hotbed” states” but we still have our masks & loads of sanitizer packed) so I have had an abnormally extra busy past few days trying to prepare. My body is so sore and hates me right now. I was hoping for a good night’s rest, but due to being so uncomfortable I took a dose of pain meds which makes me insanely itchy despite pre-medicating with Benadryl, Zyrtec, Pepcid, Tylenol, & Phenergan. I was able to fall asleep for about 3 hours but woke myself up scratching, now I can’t sleep. I’m also anxious about the trip for several reasons but mainly right now because we typically fly when we travel because it’s faster and easier on me all around. However, this trip we are driving and it’s about a 5 hour trip without stopping. I am so scared it is going to put my body in turmoil to be in the van that long. We are planning to make frequent stops, I have extra pillows, blankets, hot/cold packs, compression socks, literally everything I can think of to keep comfortable but I can’t help but be nervous. It’s been years since I have traveled more than 1 to 2 hours anywhere. I just want to be able to enjoy myself once we get there.
    #AutonomicNeuropathy #AutonomicDysfunction #Gastroparesis #MultipleSclerosis #TPN #Portacath #PowerPort #ivfluids #SmallFiberNeuropathy #AutoimmuneAutonomicNeuropathy #OrthostaticHypotension #PosturalOrthostaticTachycardiaSyndrome #Malabsorption

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    Community Voices

    any conditions you know that cause purple patches? #Undiagnosed

    i know i sound like a hypochondriac with all my questions on here, but i have previously mentioned purple patches on on my knees, elbows, and ankles. they’re blotchy and seem to be caused maybe by a blood vessel problem? i also press down on any part of my skin and it blanches. they’re among other issues, but this seems like it might be characteristic of something. if anything, seems like it might be autoimmune.
    #Undiagnosed #Lupus #LymeDisease #MentalHealth #ChronicPain #ChronicFatigue #MyalgicEncephalomyelitis #ChronicDepression #Anxiety #Depression #MultipleSclerosis #Dysautonomia #AutonomicDysfunction #AutonomicNeuropathy #PosturalOrthostaticTachycardiaSyndrome #Fibromyalgia #Dyspraxia #SensoryProcessingDisorder #PrematureBirth

    10 people are talking about this