After a recommendation from a friend I did an at home PoTS test and seemingly passed the threshold easily, with my heart rate going from 64 (laying) to 124 (standing) within a few min with no other activity. It also lasted at least 10min before slowing declining. I also contracted Mono in high school which would line up with my symptom timeline. I have a doctor's appointment tomorrow to discuss but I feel so anxious that I'm still going to be undiagnosed and confused. I've been brushed off numerous times because of my anxiety, and the fact that I'm young and a woman. But my symptoms have been getting worse and I'm barely functioning these days. I've brought up my concerns dozens of times and I've yet to get a clear answer from any doctors I've seen. I have been diagnosed with anxiety, depression, ADHD, dysmenorrhea and Hashimoto's, but I don't believe these symptoms are related and my treatments for those hasnt changed anything. I don't know if it's pots or something else but I really need answers. Any advice?
My (undiagnosed) symptoms: extreme fatigue (even with plenty of sleep), dizziness, high blood pressure, brain fog and difficulty with memory and concentration, headaches, general weakness (especially in hands and feet), always feeling like I'm not getting enough air, chest pain, usually gets worse with eating or walking around. I've been on blood pressure meds (Lisinopril) and my systolic has gone down significantly but my diastolic has not changed and my heart rate is actually worse.
Starting with how obscenely hard it is to be taken seriously and diagnosed.
you can’t even get a referral to the correct medical professional as they have started declining EDS patients, leaving us to suffer alone! With are bodies feeling like a nucular war is taking place inside of us.
The care for this condition? there is non, it’s gaslighting from the start.
The first time i started having real issues with my health, i was told “its hysterical conversion syndrome” I left that appointment as felt their was no point anymore, that dr of whom my whole livelihood was riding on, one singular person who with one sentace, decimated my whole belief in what my body told me. I was written off and left to suffer for YEARS before anyone took notice of what was happening (i now 6 years later have amazing drs) you will find specialists to deal with the comorbidities like gastroparesis and other things who provide exemplary care. but the underlying cause, the EDS, a dr who helps deal with that is rarer than a jabbawocki.
I was told “stop attention seeking, seek psychological intervention there’s nothing wrong” when in actuall fact, my joints were dislocating daily, my autonomic nervous system wasn’t functioning properly, my digestive system was partially paralysed and a whole lot more. Once you get that mark of “it’s in your head” next to your name in a medical file, drs don’t think your worth treating! Iv herd A&E staff laugh at me stating i’m a “mental health case” and i’m “most likely faking” seratonin syndrome.
The gastro doctor i saw before my current GI (who is amazing) said to me “we will stick a pin in the physiological therapy, that’s what you need” my now GI did every test possible and found all sorts of physical issues that talking therapy won’t fix. even reassuring me it wasn’t in my head and was very much a physical issue, why did it take 3 years to get to that point?
I ask you this, if you dislocate a shoulder, you go to A&E don’t you? you get pain management, treatment and follow up care. So why when you have a dissorder that causes dislocation to happen every day multiple times a day you have to FIGHT to get help?
FIGHT for pain control?
FIGHT to be herd?
FIGHT for your own medical care?
It’s catagoricaly not ok. It would be a news worth story if a young person went to A&E with a dislocated hip, and was refused treatment, told it was “psychological” in nature when there is evident diformity of the hip.
So why is that principle applied to the management of a complex, agonising, long term chronic illness that effects everything from holding a knife and fork to getting up if a toilet?
Why do the people who suffer the most recive the least care? It is the most soul destroying moment of your life, when you’ve waited almost a year or longer to see a specialist, who gaslight you, writes you off, and doesn’t offer any help or solution. and very clearly does not care about your well-being at all. Unfortunately, I’ve experienced that from most medical professionals i saw at the start when my symptoms enters the group chat, like the hulk in a bad mood. I can count on one hand, the amount of Doctors who listened.
EDS feels like your joints and being wrenched from there sockets 24hrs a day, it’s a 7/10 staring point on the pain scale.
why do people who have it have to manage alone and organise their own care when under different specialist?
Because let’s face it, it has systemic involvement and has a drastic effect on each and every one of the body’s systems. Collegen is in EVERY part of your body. If their isn’t enough things won’t work.
Would you expect a nuclear power plant to function correctly with no plotonium or uranium? you wouldn’t, is the same principle. If your missing a key ingredient for something to function it’s not gonna work properly at all.
The General Medical Councils code of conduct is
“It says that as a good doctor you will: make the care of your patient your first concern. be competent and keep your professional knowledge and skills up to date. take prompt action if you think patient safety is being compromised” That evidently goes out the window with chronic illness.
it appears many consultants, and Doctors have lost sight of that, because the main priority is keeping costs down, referring everyone to talking therapy and using psychological terms to cover up the fact they don’t want to treat patients.Or apply a plaster to the gaping hole that is chronic illness, And as a result, thousands and thousands of people are left to suffer with an illness, which destroys you.
To put into perspective, I used to be able to run 2.4 K in 10 minutes, I used to deadlift nearly 100 kg and be able to eat an entire pizza, because of EDS. I now can’t sit up in bed without help, I eat through a tube, and can’t stand without mobility aids and body braces. It decimates you from the inside out and spreads like wildfire through your body, attacking your system as it goes. You’re told it doesn’t get worse, you’re told your symptoms won’t deteriorate when an actual fact they do, and you develop more comorbidities and more illnesses along the way. I was lulled into a false sense of security….
No one should have to fight for basic care, no one should feel their sthomach knotting up before the next Drs appointment terrified of how the dr is going to react. We are people to, regardless of are hidden illness, We deserve as much care as a able bodied healthy person.
The Chronic illness community is the minority you can become part of any point in your life.
Treat us how you would like to be treat if you were unwell and suffering to, we are worth no less. We deserve the same!
I live weekly sometimes daily with migraines and throbbing headaches over my right eye.. I have difficulty with retrieving words to complete my sentences. I am dizzy (vertigo) almost all the time. I live with overwhelming nausea and take antiemetics every single day. I have difficulty with walking & other motions. I make decisions almost without thinking about the consequences. I get confused easily. There’s a name for all this and more… an creature inside my head called an Arachnoidcyst or Arachnoid cyst.
Sure it sounds like something we’ve seen in a movie 🍿 once (or not at all if you have a phobia to spiders like my daughter). Whether you realize it or not (because a Doctor has dismissed it) it too may be living inside your head.
It all started with symptoms of tremors worsening (not related) and temporary paralysis on my left side of my body (again Doctor “says” it’s not related) hmmm…
My primary Neurologist (who knew the brain was so complicated that there are multiple Doctors to treat & observe it) just kidding…
Well he suspected a stroke (yikes) & ordered a brain and cervical spine MRI.
Results showed (in part) a pocket of fluid sitting on my brain as well as my pituitary gland (no biggie) I’m being sarcastic if you can’t tell. Of course I only got to read the generated data from an email with no explanation or call back (where’s the concern?) I literally was researching and typing in words I’ve never heard of before… Google define “asymmetric prominence of the right frontal extra-axial CSF space at the superolateral convexity level” (of course I had to break it down) My autocorrect couldn’t even handle me typing it in and I had to literally copy word for word to input into this sentence. Hope it made sense? It doesn’t to me but lots of things that used to be not problem for me are extremely difficult now. It must be “growing” (who is feeding this monster in my head?!?!)
To be continued (because I have lost my sense of where I’m going with all of this.. sorry not sorry) …
Oh yeah, anyone else living with a creature inside their head???
P.S. “for grins”
my actual MRI living creature in my head
#arachnoidcyst #Migraines #neurologicalsymptoms #RareDisorder #primaryarachnoidcyst #secondaryarachnoidcyst #Migraines #migraineswithaphysicalcause (not because of stress like my primary Doctor originally diagnosed) #medicalgaslighting #MedicalPtsd
As someone with a chronic illness, and after having sat vigil for several nights by my father’s bedside keeping him company so that he would not be alone when he died, these lyrics by Waylon Jennings has always carried some significance for me:
“If you see me getting smaller, I'm leaving, don't be grieving, just gotta get away from here. If you see me getting smaller, don't worry, I'm in no hurry, I've got the right to disappear.”
Today was both surreal and a challenge.
While catching up with a friend, in chatting about my illness and the lack of progress or any meaningful medical support, I casually mentioned that I have allocated in my mind a bit of a timer. In that if from some years from now if things do not improve and my quality of life decreases any further, I will consider my options and my own right to disappear.
She did not take this well and came at me from every angle to dissuade me from even considering this path. It was a difficult conversation to have but in some way I’m grateful for it, in that my conviction on the subject is undeterred. In Waylon’s words, I feel I have the right to disappear. And as Nina Simone famously sang “if I die and my soul be lost, Nobody’s fault but mine.”
I’m borrowing a lot of other people’s words today but in the words of Forrest Gump; “And that’s all I have to say about that.”
No sooner had I finished this phone call, I got a call from my doctor and found out from him that when the hospital reached out to him to ask for information about my medical history, they were trying to get him to agree that I suffered from a psychosomatic disorder. Never mind that I was in fact suffering from chronic hyperthyroidism, and the very first thing I found when I googled ‘inverted T-waves’ was that it is most often associated with thyroid conditions—instead of getting an endocrinologist to review my case, the first thing they reached for is that I must be crazy.
As much as I continue to fight for answers and advocate for myself, I do not have endless resources at my disposal. So while I continue to hope for and try my best, I do not think it is unreasonable to consider the worst case scenario given how many doctors I saw while in hospital, all of whom failed to consider or identify that my cardiac symptoms were thyroid related despite me suggesting this on numerous occasions.
This whole day has provoked some soul searching and I find these words from The Castaway by William Cowper echoing in my mind:
“No voice divine the storm allay'd,
No light propitious shone;
When, snatch'd from all effectual aid,
We perish'd, each alone”.
Of other people’s opinions on my health journey and to circle back to the Paul McCartney penned song from the title of this post—and a serendipitous nod to name of this group—I’ll end this post with these borrowed words that I think rather effectively summarise what it is to live with an invisible illness; “Many times I've been alone, And many times I've cried, Anyway, you'll never know, The many ways I've tried”.
Just curious, have you ever been misdiagnosed?
If so, how did that label effect how you were treated by medical professionals?
Did it have any long term consequences such as difficulty obtaining disability?
Considering writing a short story on the negative impacts of being misdiagnosed. My experience led to years of delayed necessary treatments, medical gaslighting, and Inability to obtain disability.
I am considering seeing a functional medicine doctor because I've been having a lot of pain and other symptoms that regularly practicing "Western medicine" doctors are dismissing or not paying attention to. When they do "listen," they suggest prescription meds, which I have tried and am strongly opposed to. However, they're expensive and don't usually accept insurance. I'm considering taking out a personal loan through my bank or maybe using a low interest credit card and doing it anyways. I could also take out additional student loans, but I'm already in about $80,000 of student loan debt. Has anyone else paid for medical bills using any of these methods or seen a functional medicine doctor? Is it worth it? Any advice? Thank you! #ChronicIllness #money #medicalgaslighting #functionalmedicine
I recently have been taking big steps (for me) to accept my chronic illnesses, including applying for disability, publicly identifying as disabled, and starting to speak publicly about my experiences with #medicalgaslighting and #MedicalPtsd that are not uncommon for women with autoimmune and / or neurological conditions.
I have been extremely isolated throughout the pandemic, and have faced a significant amount of retaliation for trying to hold local hospitals accountable to women, BIPOC and other stigmatized #ChronicPain patients. I have learned so much from the online chronic illness communities, and hope to pay the support and advocacy forward to other multiply marginalized women who are also struggling to get the health care and respect they need.
I would love to connect with other #ADA and #OCR health care activists, in particular. I’m sharing the first of my advocacy pieces below - reaching out to advocacy groups who will interview you and help publish your story is a great option for others who are also too shy to write for themselves. I hope to gain that confidence in myself over time, and look forward to building a community of support here at The Mighty!
I went and saw a rheumatologist yesterday because of some physical symptoms I've been having. Specifically, my knee locks and I have to kick it really hard to make it unlock and then it's sore and tender for days. I also have pain in my knees, ankles, low back, upper back, shoulders, neck, and jaw. My primary care provider referred me to this Doctor when I told her I was concerned that I may have joint hyper mobility and am interested in figuring out what is causing my discomfort.
At my appointment, I had no visible signs of inflammation, so the specialist told me there was no need for testing for rheumatological conditions. She did note that my joints are hyper mobile and recommended genetic testing for that. When she touched and put pressure on my joints, it felt very odd and twitchy. Almost like an electric feeling. All she said was "there's some crunching but no inflammation."
When she saw in my chart that I used to be on antidepressants and a mood stabilizer, she asked "who's idea was it for you to go off of those medications?" and I told her my own. She asked if my pain was better when I was on them and I said I am here for physical health, not mental, and I have a therapist who I see regularly.
She recommended taking tylenol, and I told her I prefer not to. Then she said "well if you don't even need tylenol...." suggesting that many pain is not bad. I insisted "No, it's not that I don't need it, I prefer natural methods such as cannabis and resting when I need to." She became very dismissive after that and basically just told me that nothing is physically wrong and to go see my therapist.
Does anyone have any advice on where to look for help next?? I'm getting desperate.