#dysautonomia probs

[quinnfebrey]

me when my disability is disabling

[allenkleinofficial]

Got a new doctor and she’s taken care of all of my referrals so fast <33

[chicago-geniza]

Would not say that I have medical expertise in general but would say that I am pretty attuned to my own body. Correctly predicted what my doctors' differential diagnoses would be this time (adrenal issues, specifically re: cortisol; worsening GI dysmotility; potential small intestinal pseudo-obstruction)

[micah-has-fallen]

October is Dysautonomia Awareness month and Vitassium has a 31 day challenge. And I want to participate but lack consistency so I’ll prob do them in clumps. Anyways here’s a screenshot of the list :)

See y’all in a few days!

(I’m probably doing Inktober too but that won’t be posted here lol, it’ll be the month of consistency challenges)

[docbe]

Getting new doctors is always an adventure bc on the one hand, could mean finding something new, but on the other, you gotta wait so looooong….I have a new gp appointment coming up, and her profile online seemed v promising so I’m looking forward to it, but like. It feels like forever til then, and I’ll prob need new specialists around here too so that’s even longer

I’m hoping to maybe get some other opinions on autoimmune stuff tho bc like, health has been making No Sense but is p strongly in the “bad” category lately…thought it was just sinus issues but it’s branched out to muscle/joint/dysautonomia, presumably? I can’t get my shoulders to unknot and my heart rate keeps dipping and is also lower while I’m awake which makes no gd sense

I’ve had a list of shit I’ve wanted to get done and I haven’t been able to do ANY of it and I’m so frustrated about it >:( but, it’s just….waiting

[chronicforlyfe]

No one:

Not a soul:

Nothing in the vast emptiness of the universe:

My body: PUKE!!!! FAINT!!! FEEL GOOD BUT KEEP PUKING!!! CONFUSE DOCTORS!! SLEEP!! SNAP CRACKLE POP!! NO FOOD FOR YOU!!! CONFUSE MORE DOCTORS!! EVERYTHING IS FAILING BUT APPEARS NORMAL!!

And most importantly,

KEEP FUCKING 🎶PUUUUUKING 🎶

[mypotsielife]

LIFE UPDATE:

So, I have had a headache for three weeks straight now. Always constant. Never gone. However, varying severity of pain. Sometimes it's only a 3. Other times... well. I have my new definition of "10". It makes me shake and puke from it hurting so bad.

My CT came back clear. So my primary sent me to a neurologist. Who at first thought viral meningitis. But. No fever, my white count was fine. Then during the initial examination he thought he saw papilledema, which made him think maybe it was psuedotumor cerebri/intracranial hypertension. Too much spinal fluid.

So.

He sent me to an eye specialist. Who said "well. One eye measures a 3 and the other a 3.5 so maybe that's why he thought he saw papilledema, but I wouldnt classify it as that".(also fun fact I have a hardcore phobia of eyes and eye doctors and had a panic attack and my mom had to hold me in a headlock like I was 5 just so the guy could examine me 🙃🙃).

So back to the neuro. He scheduled me for a spinal tap. I'm like okay 😎 I've got this. I work in healthcare. Ik what's gona happen. This will be fine. However, my anxiety didn't play night and I cried so much before I even got on the table 🤦‍♀️ the lidocaine hurt, but honestly I've had dentists cause more pain 🤷‍♀️ BUT WHEN THEY WENT TO ACTUALLY INSERT THE SPINAL NEEDLE my bro hit a nerve. Intense sharp pain shot down my back into my toes and then both my legs went numb 🙃 it only lasted for a bit but long enough for me to be convinced I was paralyzed. Then, my spine wouldnt release the juice 🤦‍♀️ my nurse said she had been doing this for 20 years and it was literally the longest tap shes ever had to do. it's only supposed to take like 20 mins. 30-45 if it drips slowly. MINE LASTED TWO HOURS. Two hours worth of spine in needle, my arms going numb from the position I was in. And finally they were like okay well we are going to have to roll you to your side to see if we can get more fluid, because you've stopped dripping.. I'm like 😅😅 kay 😭 by this time the majority of the lidocaine had worn off and I could feel a great deal of it.

Lemme tell you. Tryna roll with a huge freaking needle in your spine is not fun 🙃 however, it did the trick. Then. He was like "I'm not gona lie. The majority of your anesthetic has worn off. But I need to take this needle out. Dont tighten your muscles just relax." And my bro pulled that needle and I screamed like a baby 😅😅😅😅 I felt so bad for acting that way cause I know it was probably a bit excessive but. Fudge a fudge. It hurt like a bad word that I dont use 🙃😅 then they get me back in bed. For the whole "lay flat for 4 hours" goes fine and dandy. I sit up to go home, and my legs go numb again 🙃 at which point they told me the nerves were angry from being poked with needles. So ya know. That's cool.

Also I learned a lot because 2 hours of not being able to move, induced boredom. And I work in healthcare and find it fascinating. So I made them show me the manomometers (measures opening spinal pressure). They showed me my spine xrays and how to read it. Then the doc was like "okay so if you were the doc and trying to determine with csf sac to aim for, which would you pick?" And the one I chose was actually the one they had used. So. A+ for me. Haha anyway.

My opening pressure was only an 8? So. Probably not the psuedotumor cerebri / intracranial hypertension. But that also leaves me with???? Why the heck does my head hurt so bad???? My next neuro apt is Monday so hopefully they find something out with all the labs and csf tests they ran. Also. Enjoy my hospital selfies, a pic of my spinal fluid, and my bandage (I told them I was severely allergic to adhesive. So they were like "okay no bandaide" and instead used gauze and tape. Which is still adhesive 🤦‍♀️ which I realize they still had to bandage but gosh dang. Hives around the insertion sight is not fun).

[spoonie-swiftie]

Tw: eating disorder and self harm

no specifics, no numbers.

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I’ve been thinking about my “journey” with my eating disorder since I read the article through a steady flow of tears last night. I usually HATE using words like “journey” and “warrior” and it still doesn’t feel like it fits right or natural in this context even though its the truth. It’s been a very long, very wind-y, crappy and treacherous road that started and stopped many times over the past 28 years and while I wish I didn’t have to ride this very shitty, low budget, rickety ass roller coaster it’s mine and I’m proud to have made it as far as I have. I’ve wanted to talk about it and I have in bits and pieces for years. But between the article coming out last night and seeing so many of my swiftie friends talk about their struggles with body image and disordered eating and seeing a ton of my chronically ill friends coming forward and sharing that they, too, have struggled with the same issues as well (unfortunately most of us have since chronic illness takes a lot of body autonomy away and eating disorders give us a very false sense of control) I really wanted to open up and share, Just to get it out of my brain, even if it gets buried by algorithms or nobody cares reads it.

I read this article written by Variety on a snippet of @taylorswift new documentary Miss Americana as soon as it came out. In it she explains how the unsolicited comments and opinions of people in and out of the media about her appearance ended up putting thoughts in her mind of what her body “should” look like and subsequently what she should or shouldn’t eat. Thankfully it sounds like she’s doing better but as I know all too well it’s extremely difficult to kick those self critical thoughts out of our brains once and for all. The thing that I think hurts my heart most is that after her helping me through years and years of my eating disorder and listening to Tied Together With A Smile on repeat so many nights and hating everything about my body, or lyrics like “and it’s a sad picture, the final blow hits you, somebody else gets what you wanted again. You know it’s all the same, another time and place. Repeating history and you're getting sick of it But I believe in whatever you do, And I'll do anything to see it through. Because these things will change” or “Wish I could make it better, Someday you won't remember, This pain you thought would last forever and ever” or “Ten months sober I must admit just because you’re clean don’t mean you didn’t miss it. Ten months older I won’t give in, now that I’m clean I’m never gonna risk it” i sang these lyrics like they were prayers I was sending to God and they were some of the few things getting me through and making me feel better. It felt like she opened me up like a well loved novel and took excerpts of my life and made them poignant and purposeful. I just hate that she has had to deal with the same feelings and it makes me wanna drop kick all the people who put their two cents in on her appearance. Repeatedly. With spikey steel toed boots.

If you’re unfamiliar with my story, here’s a tiny snippet of my life and my experience with the crappy brain monster that is disordered eating and it’s best pal body dysmorphia. I went from being tiny (thanks to growth hormone deficiency) and twig like my first 14 years, being a cheerleader and never even thinking about how I looked and then I got injured, (which kicked my genetic condition Ehlers Danlos Syndrome unbeknownst to us at the time into high gear) went from being active every day to being homebound and spending most of my time on the couch. My muscles that I worked so hard on left and everything got soft and squishy and between years of different doctors looking me up and down, deciding I must not have anything physically wrong and telling me and my mom that I was just making it up for attention I got angrier and angrier at my body for ruining my life and taking most of my friends away and started taking it out on my body. I struggled with self harm in silence for many years before I ever dealt with food issues but as I’ve learned it self hatred is damaging no matter what actions you partake in. My mental health got better after I went back to school, was diagnosed with fibromyalgia (EDS was still hiding) and joined band but after I had to drop out of community college & went back to spending most of my life in bed that’s when I developed my eating disorder. I didn’t even realize that I had an eating disorder until after I had gone through multiple rounds of treatment. I thought I couldn’t have an eating disorder if I wasn’t underweight (spoiler alert: eating disorders have very little to do with your weight or size and more to do with your thoughts and actions just so you know 🥰) When I was my sickest and was admitted to a residential treatment facility I wasn’t underweight (I was actually “obese” according to my BMI which is the biggest crock of shit but that’s a whole other story) and I had to be constantly reminded that I deserved to be there because even if I couldn’t see it my brain was just as sick as the girls who were underweight. When I finally started accepting it (5 ish days in) my insurance decided that even though all my providers said I needed to be there, had completed multiple outpatient treatment programs, and I was pre approved before I even stepped foot on property I wasn’t “sick enough to warrant such intensive treatment”. Literally told my mom and I that they wouldn’t pay because I wasn’t thin enough. I’ll never forget hearing my mom sobbing on the phone and promising them that if I died they were to blame. Thankfully, even though I didn’t get the treatment that I deserved and needed, something clicked during my third program and I recovered and while I still consider myself to be mostly recovered, having my weight yo yo-ing from Gastroparesis (literally my stomach is paralyzed and food doesn’t digest normally which is why I have a feeding tube) and other symptoms of GP screws w/ my head every once in a while. But I’m so thankful that most of that is behind us, for me and Taylor, and I hope to God it stays there. And while it’s definitely not something I would have chosen for myself (they’re really not fun, 0/10 wouldn’t recommend) I’m thankful for the people I’ve met along the way because they are some of the strongest people on this earth (even if they’re rolling their eyes while reading this, you know who you are ♥️) and I’m so proud of us and the things we’ve learned along the way. And I hope one day I can hug Taylor and thank her for all the strength and courage SHES passed on to me through her music over the last 13 years.

~love love love~

Mandie

Photo timeline:

1-this was taken at the ComeBacks retreat this November. I can honestly say I feel the most at peace with my body image now than I have in 13+ years (2019)

2-when I was physically my healthiest. I was an All Star competitive cheerleader and was very physically fit, but at the same time I didn’t think about how I looked hardly ever (2003)

3-after I got injured and was homebound from school. This was when my feelings about my body started to plummet and I was super depressed (2005)

4-during my very short time in college, just before my disordered eating started (2010)

5&6-after I had to drop out of school because my health dropped off a cliff. This is when my mental health started to turn and my disordered eating took off but I was hardcore in denial (2011-2012)

7-during one of my intensive outpatient treatment programs that actually ended up making me a hell of a lot worse (2012)

8-right after I finished my last treatment program and it finally stuck. I was in recovery but not considered Recovered yet (2013)

9-one year behavior free! (2014)

10-definitely the heaviest I’ve ever been and the sickest physically but also some of the happiest times as well (2016)

[3am-cheerios]

ayyy all the potsies in the club put your feet up!

[morhath]

foibledagain replied to your post “the nice thing about having a technically neurological syndrome that...”

I always feel like “heart problems” is cheating a little bit but it is definitely the easiest way to make professors listen when I say I need an inconvenient accommodation.

lmao my feeling is that it’s true and it’s not really even a reach or a lie of omission or anything and it’s not my fault if people make certain assumptions

[1spoonatatime]

I feel like I secretly (aka didn’t notice) subluxed my hip. I vaguely remember being annoyed with it because it’s not the hip that usually subluxes, but I don’t spend much time focusing on it because it’s common for my hips. For me, it’s more sore after the fact because it goes back in place pretty easily. Also @ doctors who say I don’t have EDS because I don’t dislocate: it’s not normal for a 22-year-old to sublux their hips, either, not to mention the related issues I have from EDS. 🙄

EDS is probably my #2 most irksome disorder; I have chronic pain, and that is generally my worst symptom, but I’m able to function more while I’m in pain than when I have vertigo or am dizzy. If you’re curious, POTS is #1 most annoying because it affects me the most, though symptoms do overlap with EDS, and #3 is PCOS, which I literally have forgotten about having before. Fibro secondary to EDS is #2.5.

Does anyone else rank their conditions in order of most annoying/ones which affect you most, or just me?

[exmowitch]

How do you have patience with friends who constantly make your pain their own? I understand as humans our natural response is to compare and contrast so we can better understand someone else’s experiences. But my pain was always mine. It was never yours. 

And here I am returning to tumblr because I need a safe, somewhat anonymous space to talk about this shit show. 

long story short? well its still gonna be long so buckle up. 

my health has taken a nasty turn. i mean waking up blind, unable to move, bp 200/150+ type of turn. IIH, hyperPOTs, dysautonomia, etc are all suspected. ive dealth with being limited and having flares and people trying to push me beyond my limits my entire life. but now pushing me beyond my limits could result in a deadly episode.... so when i say no it means no. 

i was very calm today bc it wasn’t this person’s fault per se but after being in the sun without access to hydration (when i was told this wouldn’t be the case) though for a short period, I was really sick. i needed to sit down someplace cool with water or I was going to need an ambulance soon (which I didn’t express but you could probs see) and while i am grateful she took it seriously after me saying no i cannot walk around with them i am happy to sit here once inside while they do their thing - but then she was sobbing, and i was having to comfort her - UNABLE TO SEE OUT OF MY EYE, HAVING TO COMFORT HER that its okay that I am fine it happens and its not her fault.... but I didn’t have the energy to calm her down when I didn’t to monitor my vitals and keep calm and hydrate. 

me calming her down for something happening TO ME isn’t anything new, one times was me being dizzy after telling her repeatedly i need to sit down, no i can’t push myself anymore, and I started having tremors and got seizure-like. usually its when i am dealing with my own mental health stuff. its so draining and in ways its so toxic. i don’t think its intentional that she is aware of her toxic behaviors, but she lacks such depth and awareness that there is no room for communication. and any communication (and trust me we’ve rounds and i’ve blocked her multiple times) goes right over her head. she simples cannot understand. 

today she compared my life threatening symptoms to her claustrophobia. and i am not saying that this isn’t just as real for her -- i have my own OCD issues and I get it, it makes it physically impossible, but i guess it hurt as it always does that my word and the common send of hey my blood pressure is sky rocketing and I am going to have a bad episode and I can feel the pressure building in my neck just wasn’t cutting it.. and as much as my anxiety consumes and freezes me and i feel very much like I am dying, I will not die. But you know what could kill me? These scary episodes if I keep pushing myself, not listening to my body or getting treatment if my BP doesn’t go down. 

Idk.. it just pisses me off

[thelifeoflorna]

~15/10/2021~ Been feeling rather sorry for myself all day. Fatigue episode, headache and PoTS flare up in full force 😭😫 I feel like things really came to a head yesterday - I pushed things way too far at uni in terms of my health - but I feel very much caught between a rock and a hard place 🪨😰 Had my first zoom meeting with specialist mentor for uni - she was super nice and had a super cool first name, but we'll call her L on here 💜 She didn't have any background other than what course I'm on - so it was a bit like wow where do we start!? But felt good to offload a bit 🥺 I'll be seeing her every week during term time from now on 👍 A was supposed to be coming in for a bit in the morning to cut my hair 💇‍♀️ and help me with a few bits at home, but she couldn't in the end, which wasn't her fault, but not exactly ideal as I was struggling to even move at points, so the whole day was very slow progress - me attempting to get through the bare essentials at home and sending a couple of emails 😫 I ended up feeling really sick by the time I made it onto the bus and train to head to parentals for the weekend, but at least I was on my way. Had dinner once I got here, by then it was already too dark to go for a walk, but prob no bad thing as not well enough really 😵 Just been chilling and catching up reading a blog I used to love but hadn't visited in a while! 🤍 🦄 #instadaily #instablog #update #mentalhealth #dissociativeidentitydisorder #cptsd #autism #traumarecovery #edrecovery #anxiety #chronicillness #disability #pots #potsie #dysautonomia #positivevibes #recovery #coventgarden #london #iconic #architecture #architecturelover #travel #walking #streetphotography #urbanphotography #timeless #quaint #fatigue #faded (at Covent Garden) https://www.instagram.com/p/CVEAc3cqEf-mWxTJyyk8eVbzzUsYJxti29YOWM0/?utm_medium=tumblr

[coffeeandpots]

Them: Do you have any diet restrictions?

Me: Have a seat... *Pulls out list*

[mypotsielife]

Back story: I started prednisone today, because my lungs suck. And now I have hypertension. Which is never a thing with me, because dysautonomia keeps my blood pressure fairly low. So. I decided to do an experiment 😂

☆When you know your chronic illness well enough, to use it against a new issue.☆

Question: Will taking a shower lower my blood pressure back to normal, and alleviate symptoms of hypertension?

Research: From my own personal history 😂 I take a shower, and due to dysautonomia making me have orthostatic hypotension my blood pressure goes from 100-90/70-60 to 70-60/40-30. This is why I pass out 😂.

Hypothesis: Taking a shower (without the use of my shower chair) will lower my blood pressure back to a "normal" range of 120/80, which will alleviate my symptoms.

Experiment: Take a hot shower for 20 minutes without sitting.

Analyze results: Blood pressure pre-shower was 142/91. Blood pressure post-shower was 115/67. Blood pressure was lower than hypothesized, but still within the "normal" range. Headache, chest pain, and dizziness were all alleviated.

Theory was a success.

Things I never thought I would say: Praise the Lord for dysautonomia.

[nerdymedzebra]

Unexpectedly prob the best summary of having EDS/HSD I've seen so far. Except "lack of collagen" is incorrect-- it's faulty collagen.

"The name, EDS-Hypermobility Type, is misleading. The joints, are of course affected, but so is every system in the body due to the lack of collagen. These include the structure and function of the craniosacral system, autonomic and central nervous systems, sensory organs, proprioception, cardiovascular system, respiratory system fascial system, integumentary system, gastrointestinal and reproductive systems, lymph system - EVERY SYSTEM is affected10. Additionally, there is some overlap with mitochondrial disease and possibly ion channel disorders (channelopathies).

One of the primary and most debilitating symptoms of EDS is widespread, unrelenting and varying pain, with episodes of acute, excruciating pain when there is a direct joint injury, subluxation or dislocation. For many, these occur daily with mild physical impact or sometimes no impact at all. Consequently, the ligamentous laxity in the joints causes compensatory muscle recruitment for additional stabilization, which leads to muscle fatigue and small muscle fiber spasm, causing full body pain and exhaustion. Many people with EDS-HT require assistive devices to stabilize joints. Bruising or mild bleeding tendencies are common and variable due to the fragility of the venous structures; the skin is often soft, mildly stretchy, and delicate.

Of importance is the direct involvement of the central nervous system. Dysautonomia or autonomic nervous system dysfunction, is estimated to occur in varying degrees in 100% of people with EDS. It affects both the sympathetic and parasympathetic branches with a tendency towards sympathetic hyperactivity. Patients may experience heart rate, blood pressure and temperature dysregulation, pre-syncope, syncope (fainting), gastroparesis (slow digestion), Reynaud’s syndrome, anxiety/depression, poor sleep/insomnia, and trouble concentrating."

"The person with EDS is often erroneously labeled as depressed at a young age and prescribed a host of medications which are ineffective. In prepubescent children, Ehlers-Danlos symptoms may originally manifest as panic attacks, behavioral outbursts (due to sympathetic nervous system hyperactivity), poor proprioception, reduced muscle tone, early repetitive injuries and joint pain. Although hypermobility may be present, it is frequently overlooked. 

.. Hopes and dreams of having a normal life with normal activities are dashed and they frequently lose the ability to do activities that they once enjoyed. Their calendars are filled with doctor’s appointments and medical tests. The young EDS patient faces the disheartening knowledge that they will likely live in pain for their entire lives and activities that their friends can do will not be possible for them to do. Fatigue and pain will control the activities of the day which will be modified to sustain energy for the next day… and the next. The person with Ehlers-Danlos has a very, very difficult life."

"Many people with EDS may not realize they have it. They may present to the craniosacral therapist with an extensive and complicated medical history with their primary complaint being chronic pain. They may have been diagnosed with fibromyalgia or chronic fatigue syndrome and prescribed several medications; they will likely have fatigue, anxiety and depression.

A clinic intake form which includes health history questions for each system, injury history and surgical history will likely yield impressive but daunting results.  It is especially important to note any history which includes repetitive joint injuries, subluxations, dislocations, fainting, cardiovascular abnormalities (such as mitral valve prolapse and aortic root dilation), general chronic pain, gastrointestinal disturbances, headaches and unusual visual symptoms (retinal detachment, nystagmus, corneal injury, or pupil dislocation). Brain injury, brain fog, trouble concentrating, and poor memory occur frequently. Numbness and tingling in extremities, nerve pain, Chiari 1 Malformation, craniocervical instability, and small fiber neuropathy are common. They may have or have had Complex Regional Pain Syndrome (CRPS), immune system dysfunction, and mast cell activation disorder. They may be on state medical assistance and unable to work and need assistive mobility devices."