autonomic neuropathy

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I Didn’t Eat Enough Today - I Could Use A Hug

I didn’t eat enough today. That was one of my goals. Five days in a row of eating enough and I’m going to miss day six.

It doesn’t help that the ala I added to my shakes makes them super gross. (I’m gonna need to go back to capsules.)

I did take all the probiotics I’m hoping will fix my dysbiosis. I did take the supplements I’m hoping with heal the nerve damage. And I drank the juice I’ve added to my diet for nutrients.

But I’m at half the number of shakes I’m supposed to drink today and I just want to go to give up and go to bed.

How do you eat enough when you’re almost never hungry? When even the one time a day when you are hungry, you’re not interested in food? Or when you usually really don’t want it. And when you do eat, you often get sick?

Eating enough is supposed to help you sleep better. I can’t sleep most nights. Really high cortisol.

I left off the idiopathic part and looked up “autonomic neuropathy,” and it’s either reversible/treatable or I’ll lose this battle in 6-9 years. I already feel like I’ve lost so much over the last year and I know there are people who have it worse than me.

I just could really use some support tonight. And maybe someone who would be willing to eat and sleep for me because I really need that. (Though I’m depressed too and the limited sleep I get is my only reprieve from reliving this same day over and over.)

I’m just so tired. And I’m tired of everything being so hard. And I’m tired of having to go through all this stuff alone. And not having anyone to talk to about it.

I’m tired of trying stuff that doesn’t work. Tired of spending hundreds to thousands of dollars on stuff that doesn’t fix what needs fixing. Tired of doctors not knowing what they’re doing. Tired of their bandaids. Tired of forcing myself to eat all day. Of not being able to sleep all night. I’m tired of my brain not working as well as it did even a year ago. Even six months ago. I’m tired of losing functionality in general. It feels like it’s happening so fast.

Two summers ago, I could be outside. Not anymore. It’s too hot. A year ago I was hiking regularly. A few months ago, I didn’t have to wonder if I’d be able to hike today. Now, it’s a question. I aspirate more. I sleep less. Part of my foot is numb now and I can feel the neuropathy all along my left side. I can’t always breathe. Sometimes for what seems like no reason. I have tachycardia that just started one day and never left. My hr jumps up to 120-155 for reason every day. And apparently drops down to like 55 when I’m awake. (But it’s average is in the 80s when I’m asleep.)

Eating has been hard for a long time but it’s harder now. I get hungry like once, when I first wake up. I never really want food. I don’t remember it. I get hypoglycemic, but can’t tell because my hands don’t shake anymore, I just get tired. But I’m always tired, so I don’t know what to do with that. I can’t eat much real food. My body just won’t accept it. I have to thin out my shakes to trick my body into thinking it’s just a beverage. No need to reject this.

Tired of doing this all alone. Tired of people really not getting it.

I’m just really tired. Really overwhelmed. I could use a hug.

#Dysautonomia #AutonomicNeuropathy #NeedSupport #tired

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It's me, hi, I'm the problem, it's me!

I often find that no matter what I’m going through there’s a Swift song “taylored” to what I’m going through (yes I did a Taylor Swift pun, because I’m punstoppable—sorry, not sorry 😜)

But today I really feel like the Anti-Hero because I publicly declared feeling a bit better here, then I did some things, which quickly became too many things, and now I’m crashing big time. It’s true, I have this thing where I get older but just never wiser but in my defence; when it comes to chronic illness, hope is a back biting beast.

More times than I care to remember or could possibly count, I start to feel better and try to do some muggle sh*t, like trying to live a normal life and stuff—then the rubber band snaps back, and hits me in face. It’s like when Steve Martin’s character from Father of The Bride says “It was like that old joke, "All those who think they have it made take one step forward... not so fast George Banks!"

So for the moment, I’m taking two steps backward, and Midnights have become my afternoons again. I’m spending some time with darkness my old friend. Fortunately I’m quite comfortable with the Sound of Silence.

#MyCondition #AutonomicDysfunction #AutonomicNeuropathy #Dysautonomia #DistractMe #ChronicIllness #ChronicFatigue #MyalgicEncephalomyelitis #MightyMusic

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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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Nervous 😟

Just venting my anxiety. I’ve been in the hospital for almost a week. I was forced to come in to the ER when I woke with a 102 fever and palpitations much more severe than my usual POTS flutters. I was diagnosed with #Sepsis and #SIRS - scary. It took a while for the cultures to come back, but they finally narrowed the infection down to my #Port . Tomorrow I have to go down and have the port removed and have a #PiccLine placed so I can continue getting my #TPN . I’m not usually a nervous person, but I am so anxious about the removal. Could be some #PTSD related to IR and my j-tube days or just fear of the unknown (pain, sedation, etc.). Local anesthesia is not always effective for me so that’s one thing on my mind, plus I don’t like not having all the details ahead of time. 😟
I’m sure I’ll be fine once it’s said and done but this on top of not feeling well has me 🤢
#Disability #Hospital #AutonomicDysfunction #Gastroparesis #TotalParenteralNutrition #Malabsorption #FanconiSyndrome #MetabolicCondition #MultipleSclerosis #Hypoglycemia #AutoimmuneImmunodeficiency #SmallFiberNeuropathy #OrthostaticHypotension #Anxiety #interventionalradiology #AutonomicNeuropathy #PowerPort #Portacath

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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


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

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


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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Feeling desperate

I don’t think I can make it through another day. My heart is broken. My brain is not working well. I feel so unloved and the pain is too much to bear. There is no one I can turn to. I feel so overwhelmed and I wanted to share. #Depression #Anxiety #unloved #Lupus #AutonomicNeuropathy #lonely #chronicdisease #alone



I am so tired of being told that I like being thin
#no i actually am chronically ill KAREN and eating maks me feel sick!
Sorry my #AutonomicNeuropathy makes you uncomfortable! #mad #hurt #ChronicIllness #sick