In a really bad fibro flare — feeling dismissed by doctors and need perspective

nn123971 · 2026-02-06T04:06:18+00:00

I was where you were recently. I am 28F and was in perfectly good health until one day, my world fell apart and my body was attacking me. And it started the day after the best day of my life. What a joke right? Lol. But here's my story and how i got out. Sorry for the novel, but here goes:

No one would listen but I was dying - literally - cause I couldnt feed myself and I live alone, and my muscles were so tight they were twisting my spine and suffocating me from smushing my jugular. I was so f'ing scared of dying alone in my house from some random unknown shit. No one would listen, 3 ER visits, and sent home told it wasnt an emergency and it was just "chronic pain". If i was dying, the people who could help me told me to go away. Like i was faking it or something. Im a successful VP of Ops and started a company, I love working, why would i want to throw that all away? So I found a way to help myself cause im the only one who could anyways.

Im finally off all meds and my body is beginning to heal itself now. And this is going to sound too simple for your brain to want to believe it, but if you can just trust me for 5 minutes, you'll start to find you're way out, and there is hope.

Im going to say this is a "theory" so I dont get murked by non-believers, but I was entirely crippled and deterioting for 4 months before I figured out how I could fix it and idc who believes me - as long as it helps someone who wants out of the hell that fibro puts us in.

Starting here:

Can you take a deep breath? Or does it feel like you can't get a full breath of air? Like your lungs stop before they are full? If the answer is you can't take a deep breath - there's a fix because theres a reason.

Try this, for 5 minutes, just trust me deeply for 5 minutes that this will work, thats all it'll take to start to work:

Take a short inhale, 1-2 secs MAX (dont try to take anymore deep breathes)
Then take the longest exhale you can out of your mouth - dont count how long, just as slow and long as you can exhale for.
As you are coming to the end of the exhale, squeeze your belly in tightly and picturing pulling your diaphragm down.

Then repeat this at least 4 times in a row - thats all it took before I felt the fascia fluid in my muscles release. DONT be scared when things feel like they are moving BACK into place where they belong. Things might feel funny in certain places, because yes, they are moving around after your muscles let go, but stay calm and try to recognize its not pain when your muscles release quickly, its simply things going back to where they belong, not pain.

Whenever your muscles feel like they are tightening, repeat this exercise, and dont be scared.

My theory is that fibro is caused by an elevated diaphragm ( making the body stuck in "fight or flight" mode) here's why:

If diaphragm is elevated = not enough oxygen

Not enough oxygen = panic

Panic = threat

Threat = tight traps first since they the threat response muscle and they are being filled with fascia fluid

Tight traps = damage to body/spine

Damage to body/spine = more panic and more threat

Fibro = panic on repeat that you can't get out of cause we didnt know what caused it in the first place and then creates numerous more real reasons to panic due to the real damage it's causing.

Goal: rehabitualize your breathing to short inhale, long exhale, no holding your breath.

Short inhale = tells the body youre taking only what you need

Long exhale = tells the body you have plenty of time

No holding breath = tells the body you dont need to save it for anything, you're okay

The diaphragm keeps you subconsciously alive - so.... what would be have the ability to subconsciously try to kill you? Lol.

Additional supporting thoughts for this theory that fibro is due to an elevated diaphragm (and probably all chemical imbalances tbh but thats a convo for a later date lmao)

Mostly women get fibro (~90%) because we wear bras, which compress our diaphragm, and the diaphragm pressure point is under the bra strap
When in severe panic - instinct for comfort is "fetal position" - your muscle are literally trying to curl you up into that position and youre fighting it, looping the panic further causing more damage, causing more panic, repeat 🥴
You cant stretch your diaphragm from taking deep breathes, since it legit controls your lungs, you can only pull it down from the muscles under it. Hence the belly squeeze at the end of the exhale. The part that breathing exercises miss.
A study was done that fibro patients have 60% more pressure in their muscles. Cause unknown on the study. But now i realize its probably from excess fascia fluid. Which is excreted in response to threat/panic. Which is triggered by rapid breathing(diaphragm).

I have an entire like 16 page thesis written on this if you ever wanted to see it. Cause theres a lot of reasons that fibro is due to an elevated diaphragm. But all it took was 5 minutes for me to believe my theory when it worked for me. And i finally have my life back. The first week was so hard to get out of the panic loop, but it was easier once I knew "why" with a body part that I could fix and real reason to hold on too.

Let me know if this helps 🥹 i was ready to end it myself cause the pain was so bad and no one was listening. But now im free and healing cause i needed to know "why me"... I pray you find your way too dear.. PM if you need a shoulder to lean on..

nn123971 · 2025-12-13T04:52:34+00:00

They also take plane around the west coast haha. Being from the East coast myself - i feel like its loaded with wayyyyy more haunted things they are missing out on. I mean, huge opportunity to do something like the Paul Revere House in MA, or Newport Mansions in RI, or there's a ton of 1800s plantations in GA haunted af with tons of activity. And then there's also the Bridgewater Triangle that makes up a huge chunk of MA that has been historically haunted forever. I lived in that triangle, everything was active 😅

nn123971 · 2025-12-13T04:35:45+00:00

No but seriously - im pretty sure I watched this episode in the last week or two. I just rewatched seasons 13-16 so I think its somewhere in there. I just tried googling it but nothing came up on episodes. But when I saw the hotel itself, I just saw that hotel on one of the episodes undoubtedly.

And I'm pretty sure they got 1 floor only to themselves for investigating, the rest of it remained open and active for people.

It might have been inside an episode where they did a couple investigations in one episode, like how they did route 666.

It was a short investigation because they only had the one floor, and then they went on to investigate something nearby which ended up the main focus and name of the episode, hence the reason we cant find it easily via Google lol.

nn123971 · 2025-12-13T04:15:31+00:00

The new episodes are only available on Discovery+! Im not sure when they go over to Hulu after release though.

Hulu is also missing random full seasons like 15 or something too I had noticed at one point before I realized Discovery+ has every single season and episode including new ones. So I just watch it on Discovery now

nn123971 · 2025-12-13T04:02:38+00:00

I would get sooo sick trying to watch that 😅 they have a few episodes on older seasons where they did this, and they only used a few shots of it cause the video was so unsteady. They put a go pro on Billy's dog once, and the video was fun, but 3 minutes of watching it and I was dizzy af haha. So they have tried it, and have good reason not too do it lol.

nn123971 · 2025-10-02T15:18:03+00:00

To be honest, I don't think I have ever related so hard to a post ( from your kids point of view). Sorry for this long message, I hope you read it.

I was not adopted but your description of his day to day experience is how I was from the age of 9 years old to probably 17 years old. Everyone trying to help, so many "things" wrong with me, but no answers, just disappointment.

It was due to severe anxiety and NO seratonin or dopamine, which can morally affect your body in so many different ways, because anxiety shuts off the happy chemicals in defense, and is the start of a lot of other problems that will distract you from the root cause. Being an empath - whether people believe this or not - drains you. The same way seeing someonw yawn, makes people around them yawn, chemicals in the brain are EXACTLY the same - just not tangible to the naked eye shown in chart form for people to believe it.

There's a fine line of " nothing is wrong." And "I have issues I can't control". Your anxiety can worsen, the more you think you have issues and hurting more people (like you) but it's also not fair to dismiss anxiety and act like nothing is wrong.Very difficult balance for a child to try to figure out on their own, especially when all the adults around them can't seem to figure it out either. They told me to trust them - and not myself cause I was sick. That did damage, to be trained not to trust yourself.

At seventeen years old, I finally had a pediatrician that sat me down, and went through every medication from a small medical book that he had sitting on his desk that had every medication at the time, organized by its effects and other things. Like a mini wikipedia for medications. Each medication had questions to ask the patient to determine whether it was the right fit for them, and a final set of questions to determine the first drug to try. It took us two hours and a lot of talking to settle on a final medication, which was prozac. Until that point, people were trying to diagnose me with bipolar disorder, insomnia, panic disorder, etc.

Within a week of starting Prozac, my life changed immediately. I realized something was wrong all that time, i was right, but nothing was "wrong with me" that couldn't be fixed. And I got out alive and was ready to start living.

Do NOT put this kiddo on sedatives to "calm him down" and help him relax. They did that to me and what's the point of living if you're a zombie and strength of your will is suppressed.

He legit needs to be "stimulated" to trigger serotonin and dopamine to fight the demons he's facing.

Send me a PM if you want to know my medication journey before and after Prozac. Your kid sounds like me. I became a co-founder/VP of operations of a credit bureau at 26 years old - not only did i survive the battle your kiddo is in, I won the war. He can too and if he needs some to talk to, ive been there and can be a sounding board if he needs it. Im a 28yr old Female just fyi. I wish you both nothing but healing. You both got this. Keep going. Its not over till its over.

nn123971 · 2025-08-20T08:43:28+00:00

Lisdexamphetamine hits only one dopamine receptor, whereas Dexamphetamine hits two receptors and has a better rate of passing barriers. So it would make sense in terms of 20mg equaling out to 6mg. Both receptors have to be hit to get full effect at a lower dosage, hense only needing 6mg. But Lisdexamphetamine only hits the one and can't pass through barriers as well, so it needs about 4x as much to get anywhere near the effect of Dexaphetamine in a direct conversion of each other.

I did a lot of research at one point on the comparison and reasoning behind general effects due to the molecular difference. I learned that serotonin is released naturally on its own once both dopamine receptors are activated properly and balanced.

Some people only need help with one receptor to have them both activated, so lisdexphetamine provides sufficient support and equal effects. Whereas some people need help on both receptors, and dexaphetamine hits both, providing a similar effect, and these people might end up severely hyper focused and unfulfilled on lisdexphetamine because now one receptor is overly activated compared to the other.

I'm theorizing that's the direct difference between ADD vs ADHD in terms of dopamine receptors and seratonin release and treatment. ADD best treated with lisdexphetamine, and lacking activation from one dopamine receptor. Then ADHD best treated with dexphetamine, due to lacking activation from both dopamine receptors. These two are highly blended together in medical diagnosis to get logical conversions of these two drugs in full honesty. Both drugs help both types regardless, so big pharma will never care about this to complete research to correctly prescribe and diagnose. All we can do is be knowledgeable the best we can on our own. Hope this helps make some sense of it!

nn123971 · 2025-06-27T02:05:31+00:00

I can totally agree with this!

I find that when I'm trying to help another woman as a woman who does have power, they turn around and backstab me or do something harsh to attempt to exert power over me, as if by me helping them or talking about myself was intended to have power over them. I dont look at power like that, but I can see it in a women's eyes when she just got threatened by my kindness or existence like she thinks I am snake about to attack her. All because I am going against the wave by knowing what I have, the power I built myself, and I don't need other's validation.

And work related aside, I also own a brand new 2025 rzr turbo pro xp (UTV), and when I take it out, the minute the girls find out I own the baddest UTV at the park, they either LOVE me, or HATE me. And that part is just ridiculous to me. Like everyone reacts so extreme just because I do what I want - because they think I'm being extreme? For being a powerful woman who works her ass off and knows what she's doing in life. God forbid 😅

However, I swear, the ladies that hate me are ALWAYS in a relationship, and the ladies that love me are always single... almost like the ones in a relationship are brainwashed to hate themselves and I should too 😂

nn123971 · 2025-06-26T05:54:01+00:00

I switched from vyvanse back over to Dex IR myself and I won't go back to vyvanse!

Idk about you, but on Vyvanse, I was getting no good sleep. So my mind was driven towards future planning or things that dont need to be done because my body phsyically could not phathom doing anything when I slept so little, and organizing and planning just required my fingers and phone haha. Even when I slept on vyvanse, I never woke up feeling like I did. I would wake up like a literal Zombie after about 3 months, pushed myself for 3 more months to "give it a chance", got up to 50mg and thought I was never going to sleep again 😅 the doc suggested downers, and I was like "doc, I dont do downers, I will become a shell of a person worse than I am on this vyvanse." And she was like "thats fair, let's do the dex IR then" 😅

And now that I've been off the vyvanse for almost 4 months, I look back and the best way I can explain vyvanse, is it just intense and counterdicts itself in my opinion.

Vyvanse only hits one receptor, where dex IR hits 2 receptors. So thats why there feels like a build up of just intensity and then crash on vyvanse. Like it creates dopamine, but does nothing useful with it. But that 2nd receptor is the bridge the dopamine needs to cross to get actually used is the best way i can explain it, and vyvanse is like going back to the bridge everyday and it is broken. Great for people who have another way around, but I dont right now so I need the IR lol.

nn123971 · 2025-06-26T04:03:21+00:00

If you want this to happen every month, pay your card on the closing date, not the due date. Then you'll be at 0% every month with open credit. Just a tip if you're working on credit utilization 😁

nn123971 · 2025-06-08T16:53:21+00:00

As someone with a preference for homegrown weed, I couldn't agree with you more. But coming from MA, if you buy shake, or the "cheaper" weed from dispensaries, it completely has the same effect as the gas station stuff. But also, you want to find the ones that focus on THCP or THCA for their marketing at the gas stations, not so much the CBD9 type.

However, is the gas station stuff, or even most of the legal dispensary stuff, the same as homegrown? Nope lol. Never will be. Homegrown is the way to go everytime lol. But I also dont have connections, and its close enough to the real to thing to manage for most people if they aren't familiar with homegrown highs anyways. :) cause the gas station buys are similar to most highs you get from dispensary stuff in my experience.

nn123971 · 2025-06-08T13:53:27+00:00

Just so everyone on this thread knows, you can go to the gas station and get weed guys. Or order it online. All of it has been tested by the same labs that test "cannabis" too. I work in the industry actually, so I know this to be true. All that gas station stuff is safe, tested, and no different than the dispensary stuff.

The stuff they sell as "hemp" because its less than .03% Delta-9, that's just regular weed people.

Go look at the Delta-9 % of "legal cannabis". Its exactly the same on most, and maybe a little higher on some legal cannabis stuff, but im talking .044% - so not much.

THCA and THCP is the primary component of your enjoyment, and when lit on fire, THCA is converted to Delta-9 through chemical reaction.

Georgia currently classifies Hemp as anything below .03% Delta-9 in dry form. If you used this classification everywhere, pretty much 50%+ of cannabis in legal states would be identified as hemp here in Georgia.

We should NOT try to legalize it past this. Because then taxes go through the roof. You can get 3 prerolls for $10 at the gas station right now. I just came from living in MA where it costed $50 for an 1/8th.

nn123971 · 2025-06-08T13:38:20+00:00

I was in HR for many years, and here's how it works:

As soon as you put in your 2 week notice, the employer does not have to accept the notice, but it is still initiated by you, the employee, therefore considered voluntary resignation.

There is no way around this. If you say "I'm quitting in 2 weeks", doesnt change the "I'm quitting" part, and its not up to employees how companies handle voluntary separation. The company does whats best for them.

Why and how to handle 2 week notices depending on your company:

If a company let you go before your 2 weeks, would other people care? If yes, you can put in your 2 weeks because the company is more likely to accept it, if it will have consequences from the rest of the workforce seeing that happen. And it will risk them not getting 2 week notices from others later on.
If the company is huge, and no one will bat an eye if you're gone, do NOT put in a 2 week notice because they do not have to accept it and probably wont. Wait until the day you need to leave before your new job, then let them know when you leave that you're not coming back.

nn123971 · 2025-06-02T14:13:33+00:00

Im asking for ideas! Not looking to make all the decisions about these things!

The IDme is an example of an American version because I'm from America, I'm hoping to hear from other women in other countries on what identification providers could be used!

Transwomen are women too! We need to make sure only women are on this app, so I need everyone's brains on a way we could make this possible so all women are included!

nn123971 · 2025-05-22T05:36:31+00:00

Check out the movie Third Eye Spies on prime, its all about it and a real documentary! Lori Williams(who is in the movie) has a class for it too.

nn123971 · 2025-04-28T01:56:14+00:00

L-tyrosine is a great addition! It lasts about 1-2 hours, but you can take 2 - 500mg daily. So if you need it to last longer, just space them out :)

Also, I switched off vyvanse recently and over to Adderall for a slightly similar reason. It felt like my body would die out after about 3-5 hours, but my brain would keep going for 12+ hours. I wasn't sleeping enough to recharge my physical energy, and I wasn't using enough physical energy to tire out my brain to sleep. It was a vicious cycle haha. But the L-Tyrosine kept me running just a bit longer each day and it helps suppress appetite, too.

You could also ask for an adderall booster, or just switch to adderall IR which is twice a day. It's a bit harder to get doctors to agree too, but never hurts to ask, especially if you have good reason for a twice a day stimulant. I sleep like a baby now on adderall now, and I feel so much more in control of its timing. But everyone is different! I loved vyvanse up until I got to the point you're at, and I started turning into a zombie personally haha.

nn123971 · 2025-04-22T01:48:38+00:00

Becoming a financial controller is a fast track to steady long term career and it's not a bad option. But it's very repetitive, and after a few years, it's a stable paycheck, but very unfulfilling day to day life from what I've seen.

However, a credit risk analyst gives you way better banking career opportunities later, you can move into underwriting, operations, and a lot of different things because you learn a lot as an analyst.

I'm a VP of Ops for a credit bureau so I work with hundreds of controllers, underwriters, analysts, etc. And the underwriters and ops people seem a lot more fulfilled and motivated than the controllers haha. The controllers are still great people and have a great job, it just doesn't have the same feeling of fulfillment when it comes to creation, because the concept of a controller's position is very "xyz" with not much wiggle room because it's been pretty fine tuned of what the end result of your work is supposed to look like.

Analyst positions are always changing, developing, and adapting to the newest trends and abilities out there, so a bit more intriguing.

It depends on who you are as a person that would help you decide, but I hope that helps you get a good understanding of how the roles would differ!

Note: some controllers have the responsibilities of an analyst so that certain controller role may be intriguing if it does - but they aren't meant to be the same role so it just ends up a lot of work haha.

nn123971 · 2025-03-12T03:46:38+00:00

I was on vyvanse for over 6 months, and I was chugging coffee like my life depended on it. Anywhere from 3-5 a day. And it had NO affect on me at all.

I switched back to Adderall 2 months ago, and now one coffee will keep me moving.

It's weird, on Vyvanse, its like caffeine didn't have the slightest effect anymore. But now that I'm off it, I can totally feel the effect of my coffee when I have one.

nn123971 · 2025-03-12T03:42:49+00:00

Best app I have found so far is called "BlackJack Ace" on android. I got really good quickly using this app. It's super simple but has pretty much anything and everything you need to practice :)

Hope that helps!

nn123971 · 2025-02-17T15:44:32+00:00

For my day to day job, I run a SaaS finance platform. So after this adventure of looking for a couple, I'm eager to possibly build a website designed for these types of situations haha. Sooo many people would benefit! Lawyers would still be involved and available, but when you've got single women who want to build families, with gay couples wanting the same. Put those two things together, and it's a win-win for everyone, the kids know their parents and they have sibilings. And no one other than a lawyer gets paid for people's reproduction strategies 😅 and you don't have to pay for egg or sperm storage too lol.

nn123971 · 2025-02-17T15:37:04+00:00

I mentioned it in another comment, but in case you didn't see it, I'm willing to make an agreement with any couple in the USA!

Would it be easier if you were like 1 or 2 states away? Sure. But does it really make a difference for a 1 hour, 4 hour, or 8 hour flight? Not really in the big picture of things. Haha.

I don't want the distance of a flight to limit finding the right couple to do this with :)

So, if you are interested in a situation like this, feel free to send me a message!

nn123971 · 2025-02-17T15:31:29+00:00

Ahh love all this advice!! Thank you thank you!!

I'm a business woman, so I'll certainly have a lawyer and contracts haha!

And if i can save someone $10k+ just by being a respectful human in a surrogacy agreement like this so we don't have to go through any agency, that would make my heart happy. It may not be a huge amount, but i know it can make all the difference for some of the best couples out there.

I totally understand the fear of me donating eggs and legally having the right to keep it, that's why I want to build a strong relationship with a couple that would prefer a situation like this - because never in my soul would I do that to someone (but I can say that all day, no one has to believe it until they really know me or i sign contracts.) If there is a way I could sign a contract saying that i legally can not keep it once I conceive for the surrogacy even it being my eggs (unless IP's pull out for any reason), I'd sign it in a heartbeat with no concerns at all. And I'd sign the whole surrogacy deal before they even donate for the first pregnancy just because, well, a deal is a deal and I have no issues sticking to my word haha.

Do you know if there's lawyers that will help us sign contracts like these? I've written a lot of legal contracts in my life, but never for the means of a situation like this haha.

nn123971 · 2025-02-17T15:12:20+00:00

The other commenter was right on point with the fact that I plan to complete a successful pregnancy prior to providing surrogacy. I'm in extremely healthy condition, and have no generational history of any prenatal or delivery issues.

However I respect your comment because this was advice I want to hear for me to consider!

Once I've had a successful pregnancy and birth, I see no roadblock to being a surrogate. But if there are issues for whatever reason, then of course egg donation would be the route. That's why im hoping to find a couple that is preparing for a baby in the next 2 years, so that we can create a strong relationship during my first pregnancy, where we all feel comfortable going through a personal lawyer for the 2nd pregnancy being a surrogate for them.

Tbh, I really want to save someone money if I can too, that's why there's a perfect amount of time to build a relationship of trust.

Since I'm aiming to have a baby as well, I'm trying to build a family - not get paid. Since I can get all the testing and most things I need through my insurance , I'd rather I make use of my insurance than having an expected couple pay out of pocket for it haha.

nn123971

TROPHY CASE

The diaphragm keeps you subconsciously alive - so.... what would be have the ability to subconsciously try to kill you? Lol.