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Medical PTSD and ME

Journal entry:

From very early on, I was a pretty sick kid, until I was diagnosed with anxiety. From then on in my medical journey, almost everything has always come back to being explained as anxiety or just a symptom of anxiety. Most of my symptoms haven't even been explored because of this and it makes it hard for me to feel heard and believed. I also don't feel comforted by the words of a doctor who doesn't order any tests to see if it could be anything else.

I once asked my doctor, back in Florida, if there was anything else the symptoms could be other than anxiety and all she said was, "we can't test for anxiety." I don't feel like that was what I was asking but I left it at that. I stopped going to that practice after multiple bad experiences... During my time there, I had an infection ignored until it got so bad they finally put me on antibiotics after the second visit, I was called a drug addict and threatened to take off my .5mg of Xanax I had been on for years for my panic attacks (and subsequently was banned from them). Why did they think I was an addict? I simply asked to refill my order... the doctor said they'd run tests first to make sure I wasn't abusing them... .5mg.. that's such a low dose and I wasn't asking to renew my prescription early or anything. I sometimes even refilled late if I didn't need them as much that month... To be fair though, I now haven't had any Xanax for a couple of years and I still have panic attacks but I've learned to manage without them by living less of a life. Sometimes I wish I had something I could take when I experience them, but I always make it through. Maybe they were a bit of a crutch. That's just not the way to learn you're using them wrong if that's the case. I may have needed to be better educated, but not accused of being an addict.

Thinking back, I remember being practically scolded as a kid for being sick and needing to go to the doctor. Doctors are expensive and my brother and I both had medical issues. I think my mom was just at her wits' end with the bills and my dad would just say "you're fine" and that I was overexaggerating... and I probably was as a kid. Especially seeing as my dad was a medic in the military, if I wasn't missing a limb, I was probably fine. As a kid, I just didn't have the life experience to not be scared when I'd get dizzy or sick. I now know I can get dizzy every day and push through the work week. I now know I can fall... hit my head on multiple occasions.. and be told by EMTs to just sleep it off (literally happened recently). Part of me is angry that I've had to go through those experiences practically ignored... and another part of me sees how resilient the human body really is. I guess I can see why doctors don't think much is a big deal. I just wish I didn't find these not-so-big deals terrifying.

Recently, and I mean this week, I had my medical PTSD triggered. I fainted this past Saturday and hit my head. I was so scared because this just keeps happening and I feel like I have no answers. I just want to know what I can do differently, whether it be medication or a better diet, to keep them from happening again. I'm already working on a better diet and had been when it happened... I do understand, now anyway, that it could be something so simple. And yet, until talking to some girlfriends of mine and then getting a nutritionist, I didn't know this. One of my doctors should have explored my diet sooner, in my opinion.

A couple of months ago... I took my partner in to see our doctor and I went with him into the appointment. It was almost a night and day difference in how I've been treated, it felt like. He went in due to "being tired" and having a harder time getting and keeping... you know, a boner. So, the doctor went over all kinds of things it could be, asked about his diet and mood and etc. Not only did he get a full blood panel workup (he had several vials of blood taken), but our doctor explained what he could eat for a better diet to give him more energy and he put him on depression medication.. all in one visit. I was so surprised.

So, I thought that when I called my doctor to tell him about another fainting spell and discuss with him what my nutritionist had relayed to me, he would know what tests to order. Instead, he said "I need to know exactly which tests to order... I can't just go ordering a bunch of tests, you're insurance won't cover it." I cried. PTSD overload. Fear turned into anger and I said to my doctor "you need to step up your game, you should know what kind of tests to order." His response was "you have to be more polite." I just broke down and cried uncontrollably at this point. He then huffed and said "fine" he would put in an order for all of the tests. By then, I was too triggered to go get them done.

I didn't sleep for 48 hours, I had flashbacks to being in the hospital and became irrationally afraid after lack of sleep of being hospitalized again. That was my PTSD hitting a crisis point.

Thankfully, after talking to my psychiatrist as well as getting some other stressors off of my plate, I was finally able to sleep and my mood and PTSD recalibrated themselves. It didn't help that one of my cats was and is sick and I had to take her to the vet and then I didn't have a good couple's therapy appointment all in the same 48 hour period.

I'm so so tired.

#PTSDSupportAndRecovery #PTSD #MedicalPtsd

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Dear Chronic Pain,

Part 1 of 2 I remember when you first reared your ugly head in my life. You were gentle at first: a twinge in my lower back, a kink in my neck, a sore wrist from writing. You were there, just peeking around the corner, over the counter, from under the covers, only just enough for me to catch glimpses of you. And then, you would go away, like you had never been here at all, and I wouldn’t see you again for a while.

And all of a sudden, you were always there, and it got harder and harder to ignore you. You went from being the voice that whispers at me in the middle of the night to the father figure screaming an inch away from my face, forcing me to notice you. It started to become difficult to get out of bed in the morning; going to school and work felt like climbing Mount Everest. I started to hate you, because you would never go away.

You became the constant ache in my spine, the shooting pains in my hips, the locking wrists three words into whatever I’m working on, the jabbing pain in my collarbones that came so sporadically. You became the inability to stand in one place for any period of time without aching, and I started to realize you weren’t going to leave; I really started to hate you then. I prayed every night to a god I didn’t even believe in that you would go away, but nearly every morning, I woke up, and you were still there. And on the mornings you weren’t, you always seemed to wait until the opportune moment to make another entrance, and remind me that I was no longer in control.

By the time I graduated high school, I still had no idea what you were – all I knew was that I was in pain, and that it was near-constant. I pushed myself to go to college, work a full time job, and continue doing all the activities I was doing before, but you kept making it harder and harder. At my college graduation ceremony, I smiled for the camera and walked across the stage with confidence, and no one would know that you were there. Your icy hands gripped my ankles, making it hard to stand in my shoes, and your hot breath shot up my back, threatening to falter my smile: you didn’t.

I started to wake up tired; eight, nine, even twelve hours of sleep just never seemed to be enough, so I slept less. It didn’t make sense to waste potentially productive time sleeping when I never got rest anyway, but even when I was awake for that extra three to four hours, I never had the energy to do anything. I had always dealt with anxiety and depression, but now, you used them as a pawn in your game against me. On days when I had low energy, I would beat myself up, unable to accept that I couldn’t do the things I wanted or meant to. I started to have anxiety whenever I couldn’t manage the pain, which eventually lead to panic attacks with time.

Even though you’ve been a nightmare, you haven’t been the worst part of all of this. There was nothing worse than laying in bed, fighting back tears due to the amount of pain in whatever body part(s) you chose to visit that day, and being screamed at to “just get up already.” There is nothing worse than not being believed by the ones you love, nothing worse than being told “it’s all in your head” and to “stop whining.” So I started to internalize. I didn’t share how bad it had gotten, with anyone, for a long time, because I was afraid of not being believed. Even now, I often downplay how much pain I am in, or how often I am in pain, because why burden others with my problems?

Modern medicine was no help; I saw countless doctors, physiotherapists, and chiropractors, and I tried an array of pain medications, but nothing would make you go. Doctors started to dampen my expectations, assuring me that they would do what they could, but never any promise of results, never an official diagnosis. I was told time and again that I suffered from chronic pain with no clear cause, which is the equivalent of handing an umbrella to someone trapped in a hurricane; it doesn’t help anyone.

It has been nearly a decade since you first crept into my life. I am 26 now, and I have come to find out that I have a compacted lower spine, which can explain away the back pain, but I still have so much pain with no answers. I now have sharp, stabbing pains to go along with my regular aches. I am tired the moment I wake. I can’t always concentrate and I tend to forget a lot of little things. I am moody and irritable at times and, though I try to keep it under control, my partner often gets the brunt of it. I occasionally get cold at the snap of a finger, and it can be really hard to warm up; sometimes I overheat as soon as I have a sweater on, and have to dig around for a thin blanket instead. My depression and anxiety have worsened over the years though, fortunately, medication has helped to alleviate some of those symptoms. And just when I thought this couldn’t get

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Dear Chronic Pain,

Part 2 of 2 any worse, that I had it all figured out, I started having bouts of extreme dizziness and occasional fainting spells in the last three months.

I remember what life was like before you crept into it. I could walk for hours and never get sore. I could keep up with my friends in dance class, my body not screaming for me to stop. I remember how good it felt to wake up after a long, hard sleep. Sometimes, I wish I couldn’t remember these things, because you took them from me, and for that, I hated you.

I hated you for a long time, and I put so much of myself into that hatred. But, with time, I’ve come to realize that it is not worth the energy to hate you. What I mean by that is that I have spent so much of the little energy I have hating you that I have let more important things slip by me. I have let life pass me by, time and again, because I have exhausted myself hating you – but not anymore. Instead, I will put my energy into learning to live with you more effectively, and into fighting you. One day, I will find a clearer answer than that general term “chronic pain” and, though no diagnosis will allow me to go back to the life I once had, and no diagnosis will bring a cure, it will at least be an answer.

Edit: It’s important to note that this was written years ago. I am now 30 and diagnosed with hEDS as well as a handful of comorbid disorders. I may not have a cure, but the answers have certainly eased my mind some in knowing I’m not crazy!!

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Hi! My name is mal. I’ve been having these symptoms and honestly I don’t know what they are I’ve had lots of these for years and I recently went to the doctor about this and he told me that I was dehydrated which i was but my symptoms didn’t get better with drinking more water. For context I have been diagnosed with anxiety, adhd and an eating disorder anyway to the symptoms.
.cold and hot flashes
.constant purple/mottled hands and legs
. Numb hands
.often dizzy
.when I stand up I often sit back down because of feeling lightheaded
. Nausea before eating
.often sweaty
.often tired after simple tasks (dishes, making bed)
If anyone knows anything related to these symptoms I would appreciate so much if you could reach out. Thank you!!! #help #nausea #Dizziness #dizzy #cold flashes #Hot flashes #numbness #purplehands #Fainting #lightheaded #Sweaty #chronic fatigue

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Just saying hello

Just wanted to introduce myself! I’m Jody, a fellow #Potsie I am 56 yo, however I feel so much older as I have a total of 15 dx chronic diseases. Unfortunately, a little more than 2 years ago, I was fainting just a little too much (lol… 🤣), as well as having "gray outs", and my wonderful doctor told me that I could no longer get behind the wheel of a car!! It’s really nice to have to depend on your 85 yo mom to drive you around (who we are not sure if she should/should not be driving distances & freeways) to doctor’s appointments, etc.
#livinglifeinafishbowl #PosturalOrthostaticTachycardiaSyndrome #saltlick #Dysautonomia #SmallFiberNeuropathy #MastCellActivationDisorder #Gastroparesis #EhlersDanlosSyndrome #Subluxations #dislocations #Fibromyalgia #ChronicMigraines #ChronicNausea #ChronicDiarrhea #chronicconstipation #MyalgicEncephalomyelitisChronicFatigueSyndrome #Osteoarthritis #RheumatoidArthritis #Facetarthritis #ChronicPain #Depression #Lonliness #bored #icantpeople

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I'm new here!

Hi, my name is Big_Boys_Mom1. I'm here because I think my son has POTS/EDS. Waiting for him to see a dysautonomia cardiologist. Good & bad days, good & bad moments. Fainting spells almost daily. Seizures. He can’t be alone. It’s scary for all of us. So many tests. So many bills. So few doctors. He’s frustrated! So are we!


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So after 2+ years I finally got the answers I've been waiting for. I already knew I had Idiopathic Intracranial Hypertension. Last week we just went over my Echo, Tilt Table, and Holter Monitor results and I was diagnosed with POTS and Raynaud's too. I'm just grateful and relieved for answers at this point. I'm on a med to raise my blood pressure to help prevent the fainting and I use a stationary bike 30 min a day to help build strength in my legs now. Baby steps but I'm getting somewhere. I'm more relieved than anything right now just to know what's wrong and finally be getting treatment for it, it's been a long bumpy road but I'm gonna be alright. #CheckInWithMe #PosturalOrthostaticTachycardiaSyndrome #IIH #IntracranialHypertension #RaynaudsPhenomenon #RaynaudsDisease #ChronicIllness #thankful #TheMighty #grateful

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Is Your Doctor Stuck In The 1800s?

Medical misogyny seems to have a tragic love affair with chronic illness, that endures to this day. So tighten your corsets, grab your eye glass, and join me on a whimsical journey to go over some of the telltale signs that your doctor may have graduated from the Freudian Pyschomedical School For Men!

1. The Instant Hysteria Diagnosis: If you find yourself presenting with symptoms such as fatigue, pain, or a mood disorder, and your doctor's first inclination is to declare that you are suffering from "hysteria," or “illness anxiety” as it’s been rebranded, it's time to check if there's a horse drawn carriage parked outside their office. We’ve come a long way since Freud's days, and "hysteria" is no longer a valid catch all diagnosis for any ailment that might befall us womb and ovary havers.

2. The Trauma Theory: It seems to be a truth universally acknowledged, that a female with a difficult to diagnose ailment, must be suffering from strife. However little known the feelings or views of such a woman may be on her own mental health and well being, this truth is so well fixed in the minds of some physicians, that she is considered as the rightful owner of having Unresolved Traumatic Issues.
* Notably, The Trauma Theory seldom (if ever), holds a spot in the antiquated physician’s diagnostic toolkit for men.

3. The Prescribed Bed Rest Cure: If your doctor recommends bed rest as the ultimate cure, you have probably wandered into a Jane Austen novel. Bed rest might have been the go to treatment for delicate 19th century ladies with the vapours, but us modern chronic illness sufferers need more than a fainting couch on which to recover.

4. The Medical Mansplaining Phenomenon: If your doctor dismisses your symptoms as "all in your head" or "just stress," you’re likely teetering on the edge of The Instant Hysteria Diagnosis.

5. The Female Frailty Fallacy: Should your doctor suggest that your chronic illness is simply a result of your delicate female constitution, you may want to remind them that women have been giving birth by squatting down in fields and kitchens for centuries, before calmly returning to their work.

6. The Quick-to-Quip Quack: If your doctor's go to response to your chronic pain or invisible illness is a condescending joke or a dismissive one liner, you may want to check whether their medical diploma predates the Napoleonic Wars.

7. The "It's Probably Just Your Period" Prognosis: If your doctor attributes every symptom you report to your menstrual cycle, you might have a time travelling physician on your hands. It's time to remind him that we are more than our ovaries and wombs, and that he probably needs a permit for the horse and carriage parked outside his office.

8. The Male Pain Scale: If your doctor seems to measure your pain on a male-centric scale, where a man's pain is always considered more severe, it's possible that he's been stuck in the 1800s for quite some time. Time to find a physician who believes that pain is pain, no matter your gender.

9. The Blame The Victim Verdict: If your doctor is quick to blame your lifestyle choices for your chronic illness without considering other factors, you might want to consider if he's been trapped in a time loop since the Victorian era. While lifestyle choices might impact our health, gone are the days when Cola literally contained cocaine, and heroin laced cough syrup was prescribed to children.

10. The You Just Need To Have a Baby Prescription: If your doctor's solution to your irregular monthly cycle, ovarian cysts, or endometriosis, is to suggest that you simply need to have a child in order to sort your gynaecological issues out, you may want to check if there's a DeLorean parked outside. Having a baby is a long term commitment, and it’s doubtful that your doctor actually has the ability to travel back to the future in order to take back their ill informed advice!

While medical misogyny and its impact on women with chronic illnesses is no laughing matter, I hope that some of these facepalm worthy diagnoses have given you a fun break from your smelling salts! And, that when it comes to medical misogyny we are most certainly not alone, so please feel free to share some of your own experiences in the comments 🩶

#ChronicPain #ChronicIllness #MedicalTrauma #ChronicFatigue #MyalgicEncephalomyelitis #Endometriosis #OvarianCyst #PolycysticOvarianSyndrome #DistractMe

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Experiences pushing yourselves despite POTS?

Ok, second question... and I won't post again for a while; no worries! Just because I'm new here.

Hey all! Just wondering, what are your experiences pushing yourselves with POTS even when it does not seem (or feel) prudent?

I'm moving to a new, massive city by myself and keep thinking, what if I have an "episode season" again... and nobody to help me?

My thought process is... this is not lethal (or so I was told); what if I just tried to live a normal life when I'm in an episode-season? I'm always taking care of myself, afraid of fainting and not wanting to feel uncomfortable (dizziness, nausea, headaches, shortness of breath). But... if I just push through, how bad can it be? Is there something else that can go wrong besides fainting* and pain that I should keep in mind?

*I will not be driving... and that's my biggest concern.

Thank you!!!

#POTS #AutonomicDysfunction #posturalorthostatictachycardia

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Fragmented I guess is the best way to explain how I've been feeling lately. Do you ever feel like you're drowning in your own thoughts, everything with your health, with your stress, but everyone is walking around you breathing just fine. They might feel for you because they care but no one is exactly in your shoes. I'm 23. I can't even lift a gallon water bottle without the urge to pass out walking out the door this morning. I used to have a life once upon a time. I get reminded sometimes when I see my friends since childhood posting about their amazing lives now and I'm so happy for them. They're hiking and traveling and doing all the things I used to do, that I can't do that I dream about. I close my eyes and wish for freedom. I wish I could be healthy again constantly. I wish I could go back and tell everyone it's okay they don't have to worry about me anymore I'm fine. I was raised to be independent, now I can't drive, walk fast, run, jump, bend, exercise without passing out or having the feeling of wanting to. Last Thursday my husband and I were at our friends' house and I started to pass out at the dinner table and tried to fight the feeling (I caught myself by the palms of my hands on the table) my best friend Ash walked me to the couch and gave me some water next thing I know I was out. I was unconscious for the longest I had ever been this time. When I came back this time everything was blurry even though my glasses were still on, I couldn't recognize anymore or hear anything anyone was saying because it was all too muffled sounding. I was totally disoriented I didn't know where I was, what had happened, or what was going on. Another couple of minutes passed and my vision and hearing returned to normal and I was once again lucid. That has never happened to me after fainting before. My cardiologist cancelled on Friday because she had an emergency Save a Heart case and I was supposed to get the results of my Echo, and Tilt Table Test. She thinks I have POTS. So does my Neurologist. I'm just ready to find out what the hell is wrong so I can get on with a treatment plan I'm tired of living like this. #Fainting #POTS #PosturalOrthostaticTachycardiaSyndrome #dizzy #lightheaded #IIH #IntracranialHypertension #Migraine #CheckInWithMe #Depression #Anxiety

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