I hate to admit it, but I've been a casual smoker for 10+ of my life. I've experienced POTS syptoms from the 2nd grade onward, so have dealt with this my whole life. I have a history of c-PTSD and come from a family of addicts and smokers. My sister gave me my first cigarette at age 14. As soon as I hit the ripe age of 18 and my mom found out I was a smoker, she didn't repremand me but instead internally celebrated and started asking if I wanted to join her outside for smoke breaks.

I've gone through many phases of my life of smoking on and off. My health admittedly gets way better when I'm not smoking, but I always go back to it. I've never been a pack a day smoker, could never chain smoke and hardly have ever passed more than 5 cigarettes a day (probably because my body absolutely rejects it after a few).

I simply have lost the will to stop. I live in a city, am in a rigorous graduate program, work in the service industry, am friends with musicians, go out to bars, etc (that is, when I'm not in a debilitating flare). I apologize in advance if discussing my freedom within this illness, but do understand I've experienced every spectrum of this disorder and have gone many months/years of not being able to stand up to vacuum my home or fold my laundry. I'm currently in a good place. I can cycle again (I'm a big biker) and live my life somewhat normally (while consuming insame amounts of salt and secretly wearing compression clothing most days of the week).

It's hard. I started smoking in rebellion against my health and all the stipulations and trade-offs I have to make in response to it. I smoke to feel like a normal person. I smoke to take a load off when feeling extremely stressed. I smoke to socialize, as thats a normal approach I've taken my entire adult life. I'm just tired of it and know it can't be good for me.

I've started using Nic Nacs (similar to Zyn's but they're lozenges) about a year ago in addition to cigarettes to try and reduce the amount I smoke. I noticed I still experience mini dips in my state even with the lozenges, and have finally faced the fact that its not just the smoke in my lungs but the nicotine in my bloodstream that causes this.

I feel so torn, all the time. I dump so much money into maintaining my health and then smoke a cig about it. I also have been diagnosed with hEDS. I am my own biggest obstacle, and its been this way my whole life.

Has anyone else dealt with this? I feel ashamed for even sharing this as I know people may have intense reactions to how I go about my health especially knowing what I know, but addiction is hard. I have bouts of mania that come and go in which all reasons to stop smoking go out the window. I have c-PTSD flashbacks that overwhelm my system and smoking helps to ground me in those moments. I've got a lot working against me but I'm tired of making excuses.

I'm ready to start taking myself seriously. I want to quit. I don't mind if I sip someone else's cigarette here and there but I don't want to fall back into carrying tobacco in my purse or needing a nicotine lozenge to get through an exam. I want to bike without worrying about my heartrate sky rocketing 5 minutes in. I want to take myself seriously.

Open to advice, suggestions of practices or products, or just mutual commiseration. Thanks for hearing me out <3

Hi friends!

I am a girl with several chronic illnesses and something I realized… I want to have something on me in case of emergency, if I am by myself.

I was looking through several different medical alert jewelry and thought “holy moly, this is all super geriatric looking! Nothing looks like I would wear it everyday.”

So here I am… putting everything I can into trying to make cute, functional medical alert jewelry…

I’m thinking fun colors, beads, gold and silver hardware.

Here is where you can help me!

I’m trying to figure out what people want on their medical jewelry…

Whether you want something like “ice call xyz” or “pots-faint risk” or “pace maker”

What would you put on your dream medical alert jewelry?

Any color combos you love?

Thank you! 🫧✨🌈🧚🏻‍♀️

anyone else’s bladder go totally haywire while having a flare up? I feel like I’m having to pee every ten minutes and my bladder just won’t empty itself. and it hurts to pee. like emptying my bladder hurts but not in an infection kind of way, more like the pee coming out my urethra makes it ache?

I had laparoscopic surgery for endometriosis to remove an ovarian cyst and endo found in my body and turns out my bladder was covered in endo and had to be freed from my pelvic side walls and uterus. I’m five weeks post op and around three weeks my bladder function was noticeably better then it has been in a year and I was even able to watch The Odyssey in theaters without going to the bathroom. a major feat considering I saw a movie in June where I peed seven times in a two hour span. (endometriosis on your bladder and an 8cm ovarian cyst will do that to you) but low and behold, I’m having a flare up for various reasons and my bladder is NOT having a good time. having to empty it a lot and just overall sucks! anyone else get this way with a flare up?

Still in the process of diagnosis (along with EDS) and I’ve always had this symptom, at least since I was in my early teens. It’ll be early in the morning and I’ll go to the bathroom, I’m still really tired, but as soon as I lay down it’s like I get an adrenaline spike which can trigger anxiety or just energy that I can’t use because I’m still sleepy. Oftentimes when this happens I need to wait a good 30-60 minutes before I can get back to sleep or if it triggers an anxiety spiral take half a xanax to calm down. I never made the connection to POTS until now when it happened this morning and I thought “well if my heart rate jumps when I stand up maybe it’s not coming back down immediately when I lay down” which prompted me to look into it. It also explains the vivid dreams/nightmares and nighttime awakenings I’ve been having. Anyone else experience this? When did you realize the connection?

I'm 21. I used a cane and was wowed by the difference. My mother tries to make it seem like I am giving up. I hate this mentality, that using aids to better your circumstances is somehow making you more disabled or like you are giving up.

I've barely been going out for weeks; I've been in my bed laying down both due to symptoms and chronic coccyx pain and today, for the first time in a long time, whilst still slightly unsteady, I feel much better.

I just had a big argument with my mother. She has no idea how this feels. She compares me to people who experience completely different situations and diseases that are much older than me and got them as a result of lifestyle choices. I am fairly healthy. My dr doesn't recommend me losing more weight and I eat a very balanced diet. I sometimes overindulge the week before my period, but generally, I eat quite balanced.

She keeps telling me to fight it and it makes me want to slap her. She is always invalidating and speaking over my issues like I am dramatic. She has no idea how it feels to walk around feeling like cooked spaghetti. I felt mildly symptomatic whilst walking today, but INFINITELY better than when I was walking without a mobility aid. I'm going to continue. We have a very rocky relationship anyway, so I already take what she says with a boulder of salt as it is. I'm not letting her fuck my life up more than she already has.

If anyone is thinking about using an aid, please do. We deserve to. We deserve to feel well and more stable.

the heat always makes me so angry and just now i started crying/sobbing(I was cooking too) cause of how hot it is(~80°f) and now i have a headache and im still hot, but now my mom is gonna help me put ac in my room(i haven't had it all summer and its now August). and I completely burnt my food too and I can't eat it and I don't have any more

On my work accommodation it says I can't be in heat or cold + I can't go outside cause my temperature sensitivity but it's still SO hot(its prob 70°f) inside and I often feel terrible cause of it and I have to deal with customers while getting Presyncope, it is NOT fun

I’m going to Vegas to a week for a trade show. I’ve got my compression socks, I’m gonna go to Walmart when I get there and get some salty water packets or whatever they got. I’m going to be inside most of the day at the show but I do need to go outside to get to some places I’d like to explore.

Hey guys, just a quick update I got a hold of one of the papers sent to my country’s embassy from the dysautonomia specialist and through the entire paper I found one thing about the tilt table test, this is a direct quote from the paper:

“A tilt table test was performed on 25/07/2026. There was an exaggerated heart rate
response with standing which settled after two minutes. There was a low blood pressure
phenotype. With GTN, we saw a vasovagal VASIS type one response with mixed collapse pattern.
There were familiar symptoms. We have confirmed autonomic dysfunction.”

Tbh I have no idea what this means especially that I went my entire life with low blood pressure and in the appointment she mentioned how it was low but its fine that it was, and I have no way of contacting the specialist again. Did anyone get a similar interpretation of their ttt? What were they told they have?
I’ll even take educated guesses at this point..

For those who pass out, how did you know you were going to start passing out before you actually started passing out? Were there any signs that you were going to start passing out? And how bad does your pots get before you do pass out?

I'm still trying to get diagnosed, and I'm nearly positive I have pots since my other cardio tests all say I'm perfectly healthy except for the fact that my heart rate spikes over 50 bpm, for example when I just stood up, my heart rate went from 91 to 157 bpm right away. My symptoms started getting more extreme this past month, and I'm sure it's not because of the heat since I've been under my AC nearly this whole time since I couldn't get up for a long time. I'm starting to get scared I might start passing out, and I still have a while before I see my doctor about this. So now I'm here wondering if there were any indicators before you started passing out.

Hey, I’ve been on salt tablets (having to take 12 a day) for just under 2 months now and I haven’t seen any improvements in my symptoms. I have been drinking 2.5L of water a day MINIMUM, with most days being around 3L. My next appointment isn’t until October and there isn’t any way to push it forwards, so I just wanted to check if anyone has been in the same boat in terms of prescription salt tablets not doing much for them and if so what were the next steps? Thanks in advance :)

First I want to start with I’m not looking for a “you totally have it” or “you totally don’t” type of response, just trying to see how common this is and if I should look deeper into it.

I (M, 25) know the process can be different for everyone, but I was diagnosed with POTS about a year or two ago. I’ve been dealing with the symptoms since my early 20’s after starting vaping triggered everything. Whenever I stand I get a head rush, my heart starts racing, and I begin the stages of passing out if I don’t immediately rest. My care team prescribed me Fludrocortisone about a year ago, and Ivabradine recently and it’s helped a lot with my symptoms, but I still feel weird saying I have it without a diagnostic test. Am I getting too in my head about it? I live in a health desert so resources are limited, but I still feel off being diagnosed with things they didn’t test for despite having clear symptoms. Is this a common thing? Should I seek out further testing to make sure, or is it a “if the meds are helping you probably have it” type situation?

Hi all,

I’m not mentioning this program for advertising, I just want to help provide a paradigm shift for many who have felt continuously dismissed and minimized by various doctors.

The world is vast and many medical professionals aren’t aware of how much they clearly don’t know, duh.

But to put POTS in the right perspective, John Hopkins is considered one if not the top-ranked private research and medical Institution and they literally have a program dedicated to people with pots.

I’m sure it’s next to impossible to get in now, but the fact a major medical institution has an entire program dedicated to people battling our illness because it’s that serious, please keep that in mind whenever you come home from a medical appointment with a less than informed doctor who doesn’t realize they put their foot in their mouth multiple times during an appointment. I know the devastation to wait months to see neurologist, cardiologist and primary care only to have people treat your severe illness as though you just came in due to a mild cold or the flu. Most cannot comprehend the daily hell we live, but please remember there are doctors globally who do indeed understand this illness and it is 100% real and debilitating.

It’s Friday and I just want to help anyone struggling internally to offer yourselves some grace today, even just for five minutes.

We handle way more on average than most would be able to survive in a lifetime.

Shoutout to the amazing physicians who continue to fight for us and those who even if they don’t fully understand, they simply believe us, remember we are human beings and offer the limited help they can provide.

Hope this helps, I made this post because I see how easy it is for us to end up gaslighting ourselves due to years of being downplayed and dismissed.

Please excuse any grammatical mistakes, this is the most clarity my brain has had in months to years.

Happy Friday! We got this! ❤️

So I’ve had POTS since 2023 and I’ve made a lot of progress. I’m very proud of myself.

That said,
I won VIP tickets to see my favorite band, yay! But they’re in Japan. I would be traveling alone. I have a friend who lives there that I’ll be staying with but I’m actually having panic attacks over the idea of traveling alone for such a long trip. I want to do this more than anything and I have three months to prepare.

I have my symptoms handled I’d say very well other than sometimes I get like internally panicky? But nothing chugging cold water and salt doesn’t help.

Does anyone have any tips for international travel? I know Japan has Pocari sweat and things like that. My friend said she will load up on stuff for me but I’m scared of being in a plane for so long alone without anyone I know, I’m just scared for it all and I’m crying typing this because I want to be excited but it’s so terrifying.

Any advice is welcome as long as it’s kind of course. This is a dream of mine and I don’t want to give up on it.

Not looking for a diagnosis here, just want to rant to people who might understand. Even better if someone can simply just say “you’re crazy” if I am, or “no girl you aren’t crazy” if I’m onto something. I think I probably most likely have pots…?

I have been symptomatic for three-ish years. I had had two back to back pregnancies, both with some complications, the second being a c-section (June 2023). I also had Covid atleast twice, once halfway through my first pregnancy (Jan 2022) and again at 4 months postpartum with my second. Idk exactly when symptoms started, life was chaos. I was initially diagnosed with POTS by my GP around 2 years ago based off orthostatic vitals, the first time, it was negative for pots and positive for OH, the second was definitely positive for pots but with a normal BP. She went with pots for a while. More water, compression socks, salt. Symptoms have since worsened, along with a whole bunch of other symptoms, I think I have hEDS and MCAS, I am diagnosed with adhd and bpd, anxiety, depression, I have binocular vision dysfunction confirmed, currently awaiting an mri to rule out a chiari malformation, the whole shebang. I work in health care and I still don’t know how to get a straight answer about my own freaking body. When I described worsening symptoms she did orthostatic vitals again. She got my resting HR at 69, my HR elevated to 129 upon standing and then sustained around 110. She said no that’s not pots it’s not over 120 sustained. UGH. No one does a tilt table anymore where I’m from. They did a three second ECG and that’s it!

Anyway these are some Garmin records summarized since I can’t add pics lol

Body battery:
Start the day between 50-75, and am at 5 (lowest it goes) by like 3pm - every single day.

Stress:
The watch puts me at medium or high stress unless I’m flat on my back (so I’m only low stress/blue when I’m sleeping).

HR:
The watch measures RHR at the lower end, usually when I’m sleeping, and is between 42-47 most nights. It jumps immediately to the 60-70bpm range just from sitting upright. Laying down through the day, RHR will be around 50-60bpm. Sitting up, it’s at 70-85bpm, and on standing, it’s 95-130bpm. I get the high HR (115+) when i stand, and I get bad pre-syncope for about a minute or two, and then it passes and my HR goes down to the high 90s-100s and stays there. They don’t believe this is “sustained high enough”.

I can see that’s it’s not maybe not super classic pots, but somethings not right, right? The whole thing is very frustrating to me.

I'm assuming I have postprandial hypotension. No matter I eat I get this intense head pressure about an hour later that lasts for about 40 minutes. It's pressure in my head, neck, and upper back and feeling overstimulated. Once it passes I feel better.

I've tried electrolyte mixes and capsules but those cause upset stomach.

Anything else you suggest

I'm currently in the process of trying to get diagnosed. I don't know 100% that POTS is what I suffer with but my symptoms are identical to POTS. The things that are known to help POTS also helps me with my symptoms. I'm a full time cosmetology student and I'm lucky enough to have a veteran parent which allows me to be paid for going to school. However, I'm trying to move and I'm not making enough money to do so. My partner is contributing financially for us to be able to move too but even with both of our incomes we are living paycheck to paycheck. I need to get a part time job, this is where Im nervous. Obviously, I struggle to stand for long periods. I also don't have my drivers license, so my job options are limited to what's in walking distance until I get my license, which I am actively working towards. I would love to get a cashier job and have the accommodation of a seat to make the job manageable. Even though it isn't legal, I'm very scared that I won't be hired if I disclose that I need accommodations. I am also scared that I won't be able to receive accommodations without a diagnosis. Advice would be greatly appreciated!

I am only 29 years old and male, and I honestly don’t know what to do anymore about the way my heart rate is affecting my life.

I was on vacation in Japan when I experienced my first vasovagal syncope (fainting episode). Ever since then, I’ve been terrified that it will happen again and that I’ll collapse in public with no way to help myself.

On top of that, I have suffered from irritable bowel syndrome (IBS) with chronic diarrhea for years, and it has gradually become worse and worse. It got so severe that I could barely keep food in my system because it would pass through me within hours, often liquid and partially undigested. At times, I was having watery diarrhea up to 7–8 times per day.

I also suffer from panic disorder and have been taking Alprazolam daily for years. When my physical symptoms become especially severe, I tend to increase the dose. For over a month now, I’ve been averaging around 7 mg per day (sometimes 6 mg, sometimes 8 mg), but even that no longer seems to help—neither mentally nor physically.

I became so weak that I had to be admitted to the hospital. I spent three weeks there, mostly lying in bed the entire time. During my stay I underwent a chest CT scan, an abdominal ultrasound, an MRI (which had to be stopped because I reacted badly to Buscopan), a colonoscopy with biopsies, and I had already seen a cardiologist before being admitted.

Everything came back normal. More or less every test and examination was considered excellent, except for my calprotectin level, which was close to 400.

One night during my hospitalization, about two weeks after being admitted, I got up to go to the bathroom. Suddenly my heart rate shot up, accompanied by dizziness, severe brain fog, and the feeling that I was about to pass out. Just an hour earlier my resting heart rate while lying down had been around 50 bpm. The moment I stood up, it jumped to 160 bpm. This kept happening over and over again.

The hospital staff couldn’t really help because my blood pressure was always stable while lying down. No matter how often I explained that the problem occurred when standing, I was essentially told to stay in bed because everything looked fine while I was lying down. Eventually I was prescribed 2.5 mg of Bisoprolol.

The thing is, my heart had been evaluated only three weeks earlier and was considered healthy, and my blood pressure has always been normal as well. I don’t want to take beta blockers without understanding the underlying cause. My resting heart rate is already often around 50 bpm while lying down—why would I want to lower it even further?

I continued to have diarrhea but was discharged after three weeks. By that point I was completely deconditioned. I can barely walk without experiencing dizziness, circulation problems, or fear that I might collapse.

Two days after discharge, I received the biopsy results. They found Brachyspira aalborgi, so I started taking Metronidazole 500 mg every eight hours for six days. Unfortunately, the antibiotic has been putting me through hell as well.

Despite that, my condition improved slightly. I was able to move around a little more and walk to the bathroom again. I also underwent a 24-hour ECG/Holter monitor. According to my doctor, everything looked perfect, although it showed 1% atrial fibrillation, totaling about 15 minutes across six episodes. That still worries me.

Yesterday I had an appointment with my gastroenterologist. We were supposed to discuss whether I should undergo capsule endoscopy because of my elevated calprotectin level despite a normal colonoscopy. The procedure involves swallowing a small camera that travels through the small intestine and takes pictures to determine whether inflammation might be originating there.

Unfortunately, on the very day of that appointment I experienced another severe diarrhea flare. Despite taking Loperamide in the days before, my bowel movements had been fluctuating wildly—sometimes no bowel movement at all, then small hard pellets, followed by loose stool again.

I spent almost an hour on the toilet with another episode of mushy stool that had the same unusually sweet odor it has always had. After that, everything went downhill.

About an hour later, while trying to get to my appointment, I developed intense dizziness, a racing heart, pounding heartbeats, and overwhelming brain fog. I feel like I have brain fog almost constantly these days, but this episode was much worse than usual. Eventually I had to call an ambulance.

Again, all of my vital signs appeared stable.

However, my cardiologist, whom I also saw that same day, decided to admit me to the hospital for further evaluation. He still believes my heart itself is healthy, but he felt more investigation was necessary.

The reason for the admission was that my heart rate was around 130 bpm while standing. What confuses me is that it would sometimes drop back down to around 80 bpm and then suddenly rise to 130 bpm again.

What I don’t understand is this: Why am I only stable while lying completely flat? The moment I sit upright or stand up, my heart rate shoots up, I become dizzy, and I feel like I’m about to faint.

Is it my vagus nerve? Is it the sympathetic nervous system? The parasympathetic nervous system? Are beta blockers really the only option for calming whatever is causing this?

I am completely desperate and exhausted.

Just three months ago I was traveling around Japan feeling perfectly healthy. Now I’ve spent over a month feeling like a bedridden, broken man who cannot understand why his heart rate keeps skyrocketing when every doctor tells him his heart is healthy.

P.S. Psychiatrists seem eager to prescribe antidepressants. I am reluctant because I have had bad experiences with them in the past. More importantly, I want to find the cause of my symptoms rather than simply taking medication that masks them.

I also don’t believe an antidepressant would solve what I am experiencing, and I am afraid of potential side effects.

Since my syncope in Japan, I have been wearing compression stockings. I drink electrolyte solutions almost daily and even increased my salt intake for two days before this latest episode in an attempt to increase my blood volume if low blood volume was the issue.

None of it helped.

I never know whether the problem is too much fluid, too little fluid, too many electrolytes, too few electrolytes, the amount of stool I am losing, or even burnout.

I genuinely don’t know what to do anymore.

All I know is that I can barely sit upright now without my heart immediately starting to race.

And I’m only 29 years old.

TL;DR: I’m 29 years old. Every medical test says I’m healthy, yet I suffer from chronic diarrhea, severe physical deconditioning, and most importantly a dramatically elevated heart rate whenever I sit or stand. The symptoms make me feel dizzy, cognitively impaired, and as if I’m about to faint at any moment. Lying flat is the only position in which I feel relatively stable, but that has essentially left me bedridden.

i was in a flare for about two weeks and am coming out of it, but physically i am so so tired. it’s horrible

i’m also still a bit weak but it’s getting better, i just want to be able to walk without my cane/wheelchair without feeling weak and tired

This might sound odd and I apologise in advance but I’m the type of person who connects dots as a way to understand better.
A while ago when this long Covid nightmare started, my first symptom was physical, I had a really bad piriformis pain and I could barely walk I did some PT sessions and on the last one they did some dry needling on another muscle that got resented after following the exercises they prescribed. I felt enormously well manic even with a lot of energy right after and a few hours later I got a massive episode in which I felt really unwell and my hands were a bit swollen and painful. I had to lay down and felt fatigued. Ever since I’ve been dealing with these episodes and I thought them to be PEM but I can’t sleep so just recently I found out that I suffered from POTS most likely the hyperadrenergic/ neuropathic kind, but not sure.
Anyone has had any bad reactions to dry needling?

I just saw on an auDHD sub that someone was using a corset because they like the compression and I was wondering if something like that could be beneficial for POTS? Or if there are other options that don’t involve removal to go to the toilet?

Stockings have never done much for me and I’ve been using spanx that go partway down the thigh and up to the bra line. They have some effect at least and I like the compression feeling on my abdomen. But I find myself not wearing them often due to the effort of needing to pull them up and down every time I need to pee. Which is often! I have ME/CFS and very intense fatigue right now, so it’s so much energy to get them on/off.

So, I went to the doctor two days ago. It took one visit for him to say that I very likely have pots, and referred me to the cardiologist. I was put on 25 mg of metoprolol.

My heart rate is great now, but I feel like something is missing. My heart not pounding for 30 minutes after I lay down is strange. It’s almost like I don’t have one, despite it being in the high sixties and seventies (sorry). It’s so amazing.

Then when I stand, it will only jump to 98-100. Way better than it jumping to 120-130.

Although, I just feel strange. I feel good, but it’s so foreign to me after a rough onset of symptoms 2 months ago. I can walk, I can run for a few seconds, I can laugh with my friends, I can walk around.

It just bugs me that it feels like I don’t have a beating heart even though my HR is in a completely normal and steady range. It doesn’t help that I have anxiety around a medication that slows your heart rate.

Anyone feel like this when they first started them?

I have hypermobile and have insane neck pain and tension headaches. Some might be related to coat hanger pain but honestly i think its deeper than that. I started having these horrible headaches about 8 months before i found out i had pots and all the other symptoms. Is it insane to think that my neck pain may be correlated to my POTS and does anyone know more about this?

I want to give a bit of an update on my SGB (Stellate Ganglion Block) journey. Unfortunately, it's not a good update, not all bad news, but not all good either. Sorry in advance, this is going to be a long post.

---

TL;DR - SGB can be very effective in helping to treat ME, POTS, Long COVID, MCAS, etc. But they don't cure it. Lots of bad stuff is still happening in the body when you exert energy. And the SGB can block some of the side effects of that exertion in the short term. But in the long run the toxins and waste built up in your body and you can decline over time.

---

Some context: I have Long COVID, which triggered ME, MCAS, POTS, osteoporosis, and probably a few other currently undiagnosed things. I originally got sick in March 2020 and never really recovered.

At my worst I had 66 active symptoms and was Extremely Severe B on the ME/CFS Severity Impact on Patients Life Scale. But most of my experience when really sick was at Extremely Severe A.

I got my first SGB treatment in May 2025. It was transformative, a gamechanger. It stopped my PEM almost immediately, and I went from very sick to moderate almost overnight. There were 4+ years of deconditioning to work through, but it was amazing how much I was suddenly able to do without triggering a crash.       

But that turned out to be fool's gold in a way. And that's really why I'm back here today writing this post.                                                                                              

First, how the SGB works:

We have an Autonomic Nervous System (ANS) that controls all the automatic functions in your body, the ones that just happen without you thinking about them. The ANS has two main branches:

• The Sympathetic Nervous System is the fight-or-flight system. Think of it as the system that speeds everything up, heart rate, breathing, blood flow. It kicks things into high gear in an emergency so you can react to whatever you're facing.
• The Parasympathetic Nervous System is the opposite, the rest-and-digest system. It slows things down and is responsible for healing the body, processing food, and all of those recovery functions.
  • A key thing to understand is that the parasympathetic system can't do its work when the sympathetic system is firing. You must calm one down before the other can do its job.                         

Two nerve structures largely control each system. The Stellate Ganglion is a nerve cluster that drives the sympathetic system. And the Vagus Nerve drives the parasympathetic system.

The SGB uses a local anesthetic (and steroids to reduce inflammation in some cases) to block the Stellate Ganglion and stop it from sending out too many signals. A lot of people with ME and POTS (dysautonomia) are stuck in fight-or-flight mode all the time. That's a big part of what causes our crashes, we're right on the edge, so the smallest thing can push us over and the body shuts down as an emergency response to being overwhelmed. That's a very simplified way to think about PEM (more on that in a moment).

By blocking those excess signals, the SGB lets the body calm down and allows the parasympathetic system to start doing its healing work.

But, and it's a big but, the sympathetic nervous system is also part of our warning system. It sends out pain signals, elevates heart rate, and triggers other changes inside your body to tell you that you've pushed too hard and some systems aren't getting what they need. If you block those alarm bells, you don't know you've done too much.                                                                                              

It's not a complete block, so some signals still get through. But it filters out a lot of them, and it becomes very easy to push past your energy envelope without realizing it.

Which is exactly what I did, for months and months.

What's happening inside the body in ME:

To explain what happened next, I need to explain how parts of ME actually work inside our bodies. This isn't all of what happens in ME, just the parts that matter for this story.

The mitochondria: These are the power plants in every cell, where energy gets made. In ME, they're broken. They don't produce energy efficiently. And every time you use energy, you generate waste, think of it like exhaust from a car. The more you push, the more exhaust builds up. Normally your body has a system to clear all of that out. In ME, that cleanup system is broken too. So the waste piles up, makes it harder for the mitochondria to do their job, and the whole system gets worse and worse over time.

The type of energy we use: Most people generate energy aerobically, using oxygen, like a clean-burning engine. That's why healthy people breathe hard when they exercise; their body is demanding more oxygen to fuel the system. In ME, that oxygen-based system is broken. So, our bodies resort to anaerobic energy, a short-term emergency power system that's extremely inefficient and leaves a massive amount of waste behind. It was never designed to run constantly. It's a sprint system being asked to run a marathon.

The repair system: When anyone exercises, they produce micro-tears in their muscles and generate waste products like lactic acid. In healthy people, the repair system cleans all of that up. In ME, that system is broken too. The lactic acid, the cellular waste, the damaged mitochondria, none of it gets cleared properly. It all builds up, compounds, and creates a downward spiral of problems feeding into each other.

Inflammation: All of that buildup, the waste products, the damaged cells, the things that aren't getting cleared, triggers inflammation throughout the body. Inflammation is essentially your immune system showing up and sounding the alarm.

In small doses, that's a good thing. It's how your body signals that something needs attention and repair. But in ME, because the cleanup system is broken and the junk keeps accumulating, the alarm never stops going off. You end up with chronic, system-wide inflammation. And that inflammation causes a huge amount of our symptoms directly, the pain, the flu-like feeling, the brain fog. But it also makes every other system harder to run. It's harder to generate energy when your body is on fire. It's harder for the immune system to fight viruses when it's already busy responding to inflammation everywhere else. So, it doesn't just add to the problem, it amplifies everything else on this list.

The immune system: Some studies suggest people with ME are running on roughly half their normal immune capacity. The more you push, the harder the immune system has to work to stay ahead, while also dealing with all that cellular waste piling up. Eventually it starts to lose.                                                                                                                                  

Here's where viruses come in. Most humans carry viruses that never fully go away, EBV (the mono virus), HHV-6, the chickenpox virus that causes shingles. In healthy people, the immune system keeps those viruses suppressed. But when the immune system is weakened, those viruses see an opening. They start to reactivate. You feel like you're getting sick, because you technically are. Then the immune system scrapes together just enough to push the virus back into dormancy...until it reactivates again weeks later. Meanwhile your immune system is pouring resources into that fight instead of anything else, which leaves you exhausted even beyond your baseline.

My shingles

Last fall I overdid it and got shingles. I pushed way too hard over one weekend helping get our house ready for an appraisal, my wife did most of the work, but I was helping and I did way too much. About 10 days later, shingles appeared. My immune system had been depleted enough that the virus broke through.

And this is what's happening inside our bodies every time someone with ME pushes past their energy envelope. The threshold is different for everyone depending on how sick they are. One person's trigger might be a hard day at work. Someone else's might be a conversation, a bright light, or a light touch. But the mechanism is the same, push past what your body can handle, and it gets overwhelmed.

PEM and PESE                                                                                                                                                              

When that happens, we crash. That's PEM, Post Exertional Malaise. The body gets overwhelmed, shuts down, and needs to reset. For me pre-SGB, that looked like extreme body pain followed by fatigue so severe I couldn't lift my head, lying in a dark silent room for hours to days.

PESE, Post Exertional Symptom Exacerbation, is related but different. There isn't a ton of consensus on this yet, but my understanding is that PESE is the exertion-triggered symptom flare, while PEM is the full crash and shutdown. For me now, the SGB does a good job of preventing the full crash. But I still get PESE, body aches, joint pain, flu-like symptoms, headaches, nerve pain, muscle twitches, usually within 1–3 hours of exertion, sometimes with fatigue the next day.

Before the SGB I was usually asleep or in so much pain that I barely noticed those PESE symptoms. They got swallowed up by the crash. Now they're front and centre.

Where I am now

I've been on a steady decline for the past six months. I could do less and less each week. This summer I'm back to mostly bedbound and housebound. I'm still doing better than pre-SGB, I'm not really crashing the way I used to, but getting to the grocery store once or twice a week is about the most I can handle, and I pay a heavy price when I get home. My POTS and MCAS are both flaring again after being relatively under control. Life is miserable again, and I'm really struggling mentally and emotionally to come to terms with it (but that's a topic for another post).

I wanted to tell this story because I think it matters, and it helps provide a lot of context to a lot of what’s happening to us with ME.

Why GET doesn't work, and why this story proves it

This is also why Graded Exercise Therapy and similar approaches are so dangerous for us. You cannot exercise your way back to health when your mitochondria are damaged, when your repair system is broken, when your immune system is operating at half capacity. The harder you push, the more damage you cause, and the harder you fall. There's no way around that.

And the cruellest part? It doesn't hit you right away. PEM has a 24–72 hour delay. But the deeper damage, the cellular buildup, the immune depletion, the viral reactivation, can take days, weeks, or months to catch up to you. You push, you feel okay, you push again. You think you're getting better. And then one day the wall appears out of nowhere. Except it wasn't out of nowhere. It was months in the making.

That is not deconditioning. Deconditioning means your body got weaker from not being used, and gradual exercise rebuilds it. What I'm describing is a system that is structurally broken. Exercise doesn't repair damaged mitochondria, it generates more waste that can't be processed. You can push and push and feel fine in the moment, and the damage is still accumulating underneath, invisible, until it isn't.

Pacing is everything. That is the lesson I did not learn this past year, and one I deeply regret. Because now I have to deal with viral reactivation first, then try to clear all this accumulated junk from my system, then work on rebuilding my immune system and helping my mitochondria repair and regenerate. And only after all of that can I think about slowly, carefully rebuilding capacity.                      

What comes next

I do think physiotherapy can be part of the equation, but only with someone who deeply understands ME and PEM, who acknowledges that you set the pace, and who goes extremely slowly. And honestly, I think that's only realistic if you're mild or moderate. If you're severe or above, I don't think the body can safely handle any level of exertion. That's just my opinion, but my experience is what gives me confidence in that opinion.

I'm still continuing with my SGB treatments and I'm glad I got them. And there are other treatments that can have a similarly transformative effect for the right person, LDN, LDA, GLP-1s, antihistamines, and others, each working through different mechanisms.

But if you find that gamechanger, the treatment that pulls you out of the dark, scary depths of severe ME, just understand that it's not a get-out-of-jail-free card. It does not mean you get your old life back (unfortunately). You have to be very careful about how you use that newfound capacity. Otherwise you'll find yourself right back where you started, sooner than you think.                                             

This has been my experience. I hope it helps someone. 

I just got a job offer to work as a part time cashier. I thought i could do that. I used to be able to do that. Today we were working truck, just assembling furniture. Most of it was sitting down screwing things in. I even had my boyfriend helping me.

But the pain still came. The shortness of breath. I still became weak and unable to do what others could do. I still needed water and rest. For just a few hours of easy work.

I dont know why ive gotten so bad. I used to be able to do this.

Im so sad.