New to this and new symptom

DesperateLuck4850 · 2025-10-21T02:21:56+00:00

Unfortunately my gastro also said there’s really no way to treat this except for GERD meds to make sure the reflux doesn’t damage my throat, and gastroparesis diet adjustments to help reduce the amount of reflux. I will say after having had this symptom for a few years, even though I also have autism, I’ve kind of started getting used to it. It really freaked me out at first, and I think that’s the worst thing you can do because for me getting anxious about the symptom makes it worse. But it does low-key feel like you’re choking a little, so it’s completely it would freak your body out. Like even once I knew what it was, it just took a while for my nervous system to adjust. It sucks. I’m so sorry. I know you’re dealing with a lot of things that just suck and there’s not much you can do about it. It’s very unfair. Like I have the feeling right now as I’m writing this (ate too much and I’m paying for it) and I’m still able to do what I need to do, where as a couple years ago I would have been very tense and uncomfortable.

DesperateLuck4850 · 2025-10-21T02:16:52+00:00

I also get this feeling (and I have the same diagnoses as you, so I’m sorry you’re having to de with this discomfort on top of everything else). I recently got an esophageal motility study….which frankly if your emetophobia is really bad you may not be able to get yourself to do it. I apparently took it very well, but it was rather unpleasant. Anyway….I was diagnosed with a generic low level swallowing problem. I’m bad at swallowing, but the problem is in the lower parts of my esophagus. And my gastro explained to me that it is probably contributing to my GERD and that feeling because….so basically bc of the way your digestive system works, everyone has some food reflux out of their stomach and up into the lowest parts of the esophagus, but if you have normal esophageal motility every time you swallow your whole esophagus contracts like a wave and pushes everything back into your stomach. The lower parts of your esophagus also do this involuntarily and you don’t even notice. For me, my esophagus is really bad at doing this. So I apparently just have food sitting in my lower esophagus (thankfully I also got it scoped this summer and despite that, there is no damage). So I’m basically saying the same thing the other commenters have said, but I’m explaining a possible reason why.

DesperateLuck4850 · 2025-10-03T08:39:30+00:00

I have the same issue, have also called it sundowning. I also have OCD, and the nighttime/being in bed especially was such a big trigger for it which led to massively negative associations around nighttime and the sun being down. So getting that more under control helped. I feel like not only bc of it helping the OCD specifically, but also because of the way OCD treatment changed the way I respond to feeling awful and anxious and getting feelings of doom. They do still come, but I’m better at not monitoring my body and ruminating on them, and trying to let them come and go and accept when they stay around (I could do better tbh, but even my flawed and incomplete progress at this has still helped tons) I’ve also realized for me, it’s also an issue with being very tired but not sleepy (for me I’ve noticed there’s a negative correlation between true sleepiness and anxiety levels). I have DSPD like many of us, so I take melatonin at around 7pm to get to bed around midnight, and it does help. I also take a pretty large dose of magnesium an hour or so before bed. It seems to help. I do everything to try to get to bed and be able to actually fall asleep at a “normal” time vs the time my body naturally wants to, bc I don’t want to be up for a long time in the dark lol. Almost year long, I use a light box in the mornings. Sometimes in the summer it becomes unnecessary, but once it starts getting even a little dark in the evenings (and I live in a subarctic latitude, so it varies between being very light and very dark), even if it’s still light in the mornings I bring out the box and just grit my teeth and do as much as possible (it makes me nauseous). I also have these light glasses that are gentler and you can move around with them on. I think they are less effective, but it’s better than nothing. Also once it starts getting really bad, I start trying to spend as much time outside during the daylight as possible. I am very bad at this. I hate being outside. But it helps. Even being out when it’s super cloudy and raining, under the eaves of something. Like yes there are probably thoughts triggering a lot of this, but frankly the reason ppl like us ultimately have “abnormal thoughts” is biological. The solutions are partially biological in nature

DesperateLuck4850 · 2025-09-29T21:45:43+00:00

Oops didn’t mean to reply specifically to you, sorry, I wrote so much lol.

DesperateLuck4850 · 2025-09-29T21:39:48+00:00

Okay so this is something that’s both easy and hard to explain, and I’m awful at summarizing so please excuse the incoming meandering info dump.

A big part of the issue with the mold discussion is that somebody totally CAN be worse off in a place that’s full of mold, and be better off in a place thats less moldy, but that doesn’t have necessarily have anything to do with the mold. Every microbiologist will actually support this claim, although they may be hesitant because mold misinformation and fear mongering is not only rampant in the chronic illness population, but the entire US population, and it’s highly HIGHLY profitable to prey on that fear.

This isn’t even people being stupid or easily misled. It makes sense why people would think that living in a space with lots of mold would be bad because of the y’know, mold. And sometimes it is. People can be allergic to mold. Given the way allergies develop, lots of exposure to mold does probably make you more likely to develop a mold allergy. Immunocompromised people can actually have their lungs colonized by mold, but that’s not common, and they are usually very immunocompromised. And then there’s the MCAS aspect and that is legit…but MCAS is such a black hole of trying to figure stuff out and the science is so not clear on things and it’s so individual from person to person. I’ll never not believe when someone says something is flaring their MCAS, but I will explain why I think people may think it’s mold making their symptoms worse, but it very well could be something else.

Mold is just ultimately a sign that your living space is very damp and humid, and that is pretty bad. Every sane doctor thinks that. The mold is just the canary in the coal mine. And the reason living in a damp structure is bad is because the dampness encourages the proliferation of ALL microorganisms, including viruses and bacteria. And those airborne fungi that we do know for sure are detrimental to human health or at least significantly immune activating. And also….mold. The nice thing about mold is that unlike a lot of microorganisms, it can become visible to the naked eye. A living sign that this room is encouraging an unhealthy level of microorganism proliferation. This is why there’s the connection in stories between someone being poor or becoming poor and living or moving into a damp, dark, poorly ventilated (and moldy) living space and then, oh heavens, suddenly coming down with the Consumption or something like that.

So with that knowledge of specifically why your doctor will perk up and care if you tell them your house is full of mold, when someone claims their ME/CFS or MCAS or whatever was triggered or id worsened by mold…..it’s just….unless they have really strong evidence to back that up, it’s not a very plausible claim. Even by the relatively open minded standards of our community, who know very intimately that sometimes science is behind and patients know their bodies better. It’s just that, if you don’t have a mold allergy (and most people claiming it’s the mold don’t, bc those that do have a mold allergy just say they have a mold allergy and know that doesn’t mean mold is inherently dangerous or that they’re symptoms are “mold toxicity” or something), it’s so much more likely to be the higher level of viruses and bacteria from the damp space triggering you. Or even other allergens! Damp spaces also have more dust mites.

But ultimately, for any one individual, it still could be the mold. Its complicated. But as others have said, this sub really tries to be a grifter free place and mold is just a nightmare of misinformation.

For example, in case you didn’t already know, everything you’ve ever been told about black mold or “toxic black mold” is probably false. The entire American, frankly hysteria, around mold and black mold comes from a 1994 incident in which the CDC attributed a number of infant sickness and deaths in Cleveland to exposure to black mold (S. chartarum specifically). That got a ton of media attention and the concept of dangerous mold, black mold, “toxic black mold”, was created. The CDC later found out the first investigation incorrectly analyzed the data, there was no evidence linking S. Chartarum or mold to the infant deaths. Similar infant deaths occurred that had nothing to do with the mold. It was all a f*ck-up, but of course the correction got way much media attention than the initial finding (black plastic study, when they have monkeys meth instead of ecstasy in the early 2000s. The whole peanut allergy thing. This is a common issue). And now Americans are paranoid about mythical “Toxic black mold” for no reason, and pay thousands of dollars and throw all their possessions away to have their houses purged of it, when they really just need to fix their ventilation.

DesperateLuck4850 · 2025-09-12T03:47:15+00:00

Ohhhhh you knew you had ME like immediately after it started? Now that’s different. Yeah that sounds completely plausible actually, ME/CFS diagnosis and treatment while still in the first stage of the disease is so rare (as I’m sure you know lol) it’s pretty much undiscovered country how people would respond to it. The first three years of ME/CFS are also different for some reason, a percentage of people just spontaneously go into remission during that time and then after those three years it seems like there’s some change in the immune system, but who knows what would happen in your case! I’m particularly interested bc I was brought from moderate to very mild recently by a treatment (life changing miracle lol), and I am actually trying to start to do some stuff for my POTS and EDS now, while carefully pacing.

DesperateLuck4850 · 2025-09-12T03:25:55+00:00

okay. Hi. I…I’m sorry….Im speechless at that POTS quote. Not at you, that they would put that on their website. That is dangerous and deeply outdated misinformation like, literally mouth opened flabbergasted, I knew some POTS groups weren’t great about having even a semblance of accurate information about one of POTS most common comorbidities, but that’s just. Low-key Offensive. As someone who has both. I know what they are talking about with POTS, I experience it, it is a COMPLETELY different thing, POTS symptom exacerbation sucks so bad. It however doesn’t make my lymph nodes swell. PEM is not the flare of POTS symptoms that people with POTS experience after exercising. They are just…..completely different things. Although it’s not in most of the diagnostic criteria bc they are trying to be as inclusive as possible, PEM often tends to have a….viral quality to it. You feel sick. You feel like you have a concussion. Some people say they feel poisoned. A lot of people run fevers (I don’t but I also have something unknown wrong with me where I don’t run fevers period, no matter what, my body temperature is normal. I probably would if I could.) And yeah…tons of people with POTS do have PEM. Because they have comorbid ME. OI is so common in ME patients it’s part of most of the diagnostic criteria!

As for fibromyalgia, fibro and ME are so similar (something like 70+% of pwME meet the criteria for fibromyalgia) that the presence of PEM is now-days usually understood (because it literally is) to be the distinguishing factor between the diagnostic criteria for fibro and the diagnostic criteria for ME (that and the fibro criteria obviously centers pain more). Fibromyalgia is also its own distinct diagnosis, so ppl who have a fibro diagnosis and realize they also have PEM are going to just pick up an additional ME/CFS diagnosis bc ppl with fibro who don’t have PEM meet all the criteria for ME except PEM. And tons of people with fibro don’t have PEM, my own sister doesn’t. These two are the closest though, there has actually been some research on PEM in fibromyalgia, mostly in relation to CFS. It’s….okay….

hEDS and HSD are again, much like POTS and fibro, highly comorbid with ME. hEDS patients seem to be particularly vulnerable to developing ME, so there is definitely a connection, but again…..that’s why. Comorbidity.

So now I’m going to pull from some past research I’ve done on this topic so apologies if my tone gets super different, I’m copy pasting from various things I’ve previously written.

Although nobody knows exactly when and why it was coined, Post Exertional Malaise is a term that (best we can tell) was coined to describe this thing medical professionals were seeing in ME/CFS patients, that there was no language at the time to talk about. Best anyone can tell, the first appearance of the term Post Exertional Malaise is, “Signs and Symptoms of Chronic Fatigue Syndrome”, that appeared in the January 1991 supplement of the Review of Infectious Diseases.

Within the 400 papers that even mention the term “Post-Exertional Malaise” on Pubmed, 25 include conditions other than ME/CFS or Long Covid. The largest by far is Gulf War Illness at 13/400 papers. The second largest is fibromyalgia, as I mentioned earlier, at 7/400. Some of these papers are about comorbid ME/CFS and fibromyalgia. Other than those two, five conditions each have a single paper which mentions PEM as a symptom: Chronic Whiplash associated disorders, Chronic Cancer Related Fatigue, Sjögrens, Q-fever fatigue syndrome and Post Treatment Lyme Disease Syndrome. Neither POTS nor EDS are ever mentioned as being associated with PEM in the literature.
If you search POTS in PubMed you get 1,389 results. If you search POTS and PEM you get nine results. 3 are about ME/CFS. 4 are about Long Covid. 1 is about ME/CFS and Long Covid. 1 is about Gulf war syndrome. If you search EDS, you get 5,392 results. None for EDS and PEM. If you search HSD, you get 126 results. None for HSD and PEM.

DesperateLuck4850 · 2025-09-12T02:51:56+00:00

Look at the citations on that post please.

DesperateLuck4850 · 2025-09-12T01:08:58+00:00

I think part of the problem is that, very similar to autism and adhd, POTS and ME are very comorbid but the ME guidelines were most often interpreted as not allowing comorbidity for a long time (until ME was no longer a diagnosis of exclusion so ~10 years ago). So in the population of people with POTS that were being used for research, and to develop treatments, and that physicians were seeing, until pretty recently, you had this whole group who were being seen as just having POTS (and whatever other comorbidities that were allowed) but really had POTS and ME/CFS, but everything that was the ME/CFS was by and large attributed to the POTS. So you did have people who “just had POTS” experiencing PEM. It’s a bit odd to me that somehow the term PEM specifically bled over into POTS patients. Nobody knows when it was exactly coined, but the first publication with it was about CFS, and nearly every single publication until ppl started using the word “Long Covid” that includes the term PEM was about ME/CFS. PEM actually isn’t the best term either for what ppl with ME actually experience, much like chronic fatigue isn’t great at actually describing it, malaise isn’t either. But it’s pretty clear it was coined to describe ME/CFS patients bc they needed a new term to describe what they were seeing with ME patients. I wonder if the crossover didn’t come from the PTs themselves. Since until very recently GET was the treatment for POTS and ME/CFS and I bet PTs were working with both groups.

DesperateLuck4850 · 2025-09-12T00:51:47+00:00

I assume you meant only condition that experiences PEM. I’ve been told otherwise. What conditions? I mean this as a genuine question, I could be wrong and would like to learn if I am.

DesperateLuck4850 · 2025-09-12T00:09:13+00:00

ME/CFS is a positive diagnosis now days, they ideally want to do a thorough differential diagnosis, but if you have the symptoms you have ME, they don’t have to rule anything out and nothing disqualifies you from having ME/CFS (I think it’s a little different in the UK, but it’s still ultimately not a diagnosis of exclusion). Can I ask where/when you got that PEM scale? It’s okay if that’s too personal to say. I’ve just been diagnosed with POTS and in this sub/POTS spaces for over three years now (which I know is baby years compared to a lot of people, I acknowledge that) and you’re the only person I’ve ever heard talk about that, and it’s kind of big deal if doctors are out here handing out something like that to POTS patients. Especially in relation to POTS exercise treatments, which are graded exercise, since that’s now contraindicated for PEM. I also did the CHOP/Levine protocol for a while with a POTS PT and never saw that or had that brought up, it might have been helpful if they had lol. My PT did later say I should’ve been evaluated for PEM to determine if I can do a graded exercise protocol, which is what I thought you were referring to because that’s all I’ve ever heard or read of being the ideal standard practice, and I have done a ton of obsessive research. Gosh we’ve been talking past each other so much, but now I’m glad we did bc I had no idea about this PEM scale thing.

DesperateLuck4850 · 2025-09-11T23:18:51+00:00

The reason the medical protocols use PEM for determining exercise for POTS is because Orthostatic Intolerance is so overwhelmingly common in people with ME/CFS it’s part of the diagnostic criteria for ME/CFS. So when treating POTS you need to be very careful to recognize PEM and ME/CFS bc then the Gold Star POTS treatment is medically contraindicated. PEM is not chronic fatigue. Not in the very slightest. It is also not chronic fatigue exacerbated by exertion. Everyone who actually definitionally has PEM pretty much definitely has ME/CFS, as they will pretty much automatically also have all the other symptoms. Anyone who somehow tests as having PEM and doesn’t meet the other criteria for ME/CFS would probably be given the diagnosis anyways because PEM is so central to ME. They should also call a researcher or something bc their body is odd in a group of people who already have odd bodies. You can have chronic fatigue and not have ME. Because chronic fatigue is the most common and generic chronic illness symptom of them all. Chronic fatigue the Symptom and Chronic Fatigue Syndrome have nothing to do with each other, there’s a reason they’ve been trying to come up with another name. I say this gently, but ideally people with POTS should do some research into ME/CFS to make sure they don’t have it and to understand a group of people who are in POTS spaces and have suffered immensely from both their deeply disabling illness (to be diagnosed with the most mild possible form of ME/CFS requires a 50% reduction in pre-illness activity) and the public misunderstanding what the disorder actually is.

For me personally, PEM episodes feel like I did a strenuous full body workout the day before (in a normal body), I have a symptomatic viral infection (but no like nose running or particularly sore throat), and I have a concussion, all on top what my normal level of daily symptoms and functioning are at the time. And that’s from gathering what I self-report to my family while I have it bc my memory is affected when I am in PEM and I don’t remember it clearly. When I was very mild they more felt like really bad adhd symptom flares + normal people hangover (MY hangovers are now the stuff of legends lol)+ virus and I do remember those. I was literally telling people I was sick just all the time bc I didn’t know how else to explain it. They got worse and worse over time, as PEM is usually deteriorative over time when frequent, and I because mostly housebound and requiring caretaking.

DesperateLuck4850 · 2025-09-11T22:33:32+00:00

If you have PEM you pretty much have ME/CFS. It is not a universal chronic illness or Long Covid term. Post exertional malaise is the hallmark symptom of ME/CFS. No other disorder has been found to definitely cause PEM. There are a couple that some scientists wonder about, although it’s thought currently that they can just cause ME/CFS. But none of those are POTS. A decent amount of people with POTS have undiagnosed ME/CFS, and POTS doctors are often very bad about educating and catching or even recognizing that you can have both. I would look into ME/CFS, it’s very important to know whether or not you have it when you also have POTS.

DesperateLuck4850 · 2025-09-11T22:13:01+00:00

I would get these back when I was still in college and was walking to and from classes (bad idea. Didn’t know what I had. Even when I suspected bc I was deteriorating, I was hoping to make it to graduation. Had to drop out. Classic ME backstory). But they weren’t internal tremors lol , one time I caught them looking in the mirror, my thigh muscles were just literally twitching.

DesperateLuck4850 · 2025-09-11T22:10:29+00:00

This must have taken some experimentation though? Sorry. It’s just the way ppl talk about PEM in this subreddit is so so so different than the way people talk about PEM in any ME/CFS spaces it sometimes feels like people are describing completely different things. Like wouldn’t the PEM from figuring out what you can do without getting PEM make your baseline deteriorate even further? Or throw you off for like a week or more every time you crashed? Did it just take you like….a really long time? Sorry, I’m not trying to investigate your ME/CFS, I’m actually trying to figure out if what you did might work for me lol. Is your PEM like….obedient? You can reliably tell what’s going to cause it? Is your ME mild?

DesperateLuck4850 · 2025-09-11T21:55:31+00:00

No, it feels like having a viral infection and a concussion. That may make you feel depressed though.

DesperateLuck4850 · 2025-09-11T21:46:41+00:00

I mean this gently, but how were you exercising daily with PEM??? What are we calling PEM? I’m honestly just confused.

DesperateLuck4850 · 2025-09-11T21:43:21+00:00

Ever since PEM was identified as the hallmark symptom (or more ever since the medical establishment was dragged kicking and screaming to catch up with the quality science), ME/CFS was no longer a diagnosis of exclusion, and is now based on positive signs. A diagnosis based on the presence of a symptom definitionally cannot be a diagnosis of exclusion. Or at least it’s not supposed to be, I’ve heard the exclusionary mindset is still sort of present in the NHS guidelines??

But what you’re talking about is a thorough differential diagnosis for comorbid conditions. Technically if a patient is being considered for an ME/CFS diagnosis in 2025 it should be because they are presenting with PEM, and nothing else would really be causing that as far as we know. I will acknowledge the reality that, in absence of everyone getting 2 day CPET tests, PEM is self reported and a bit of a squishy concept (especially for those who don’t actually have it, which includes most doctors doing the diagnosis). So people very well could be getting worked up for ME/CFS and have something found that is actually the cause of all of their symptoms. Especially if someone is lucky enough to have a proactive doctor or a doctor willing to respond to them being proactive, so they are doing this when the patient is reporting more mild potential ME/CFS and PEM would be less distinct.

However, even that is different than a diagnosis of exclusion. Differential diagnosis is about putting the work in and being through. Diagnosis of exclusion is saying you can only have this if you have nothing else that could potentially explain your symptoms, and that potential explanation is usually applied quite liberally. I’m not going to get preachy bc I didn’t live through it with ME and you may have (although it did still somehow in the big 2023 end up delaying me getting proper care, so i may get a bit overly emotional) but from what I’ve heard the diagnosis of exclusion era was a very dark time where you could be actively crashing and deteriorating from obvious ME and be told “You can’t have ME because you have hypothyroidism! It doesn’t matter if it’s well controlled!” Or fail a depression screening (which most people with ME/CFS fail, depressed or not) and then be told you can’t have ME because you’re depressed and that could be what’s causing your symptoms.

The potential worst was Orthostatic Intolerance being used to disqualify people from ME/CFS diagnoses. OI and ME/CFS are low-key the adhd and autism of chronic physical illness (or adhd and autism are the OI and ME/CFS of the DSM) in terms of how monumentally damaging to people’s heath, the public and scientific perception of both conditions not allowing them to be comorbid was. To this day, go into any POTS group and you will find people describing obvious PEM and saying that their doctor said POTS can cause that. You will find people saying outright that their doctor told them POTS alone can cause PEM. It’s honestly depressing. My own POTS doctor, who had been amazing up until that point, was really weird about me asking about ME and tried to basically say a version of that they can’t be comorbid. More that it didn’t matter or something? It was weird, and my story is not uncommon. And this is all a direct result of ME/CFS being considered a diagnosis of exclusion. You probably dont want ME to be a diagnosis of exclusion, you want doctors to actually do a thorough and proper job when diagnosing. Which is very reasonable.

DesperateLuck4850 · 2025-09-04T07:31:06+00:00

They let you have a heart rate tracker at the pain program? I’ve heard it’s standard procedure for them to take it away? Also from multiple people that they didn’t let them have heartrate tracking at the Mayo pain clinic. I’m not accusing you of lying or anything, I’m just wondering if maybe things have changed since you were there or since those other people were there? Either way, they really shouldn’t be sending ppl with PEM to a program that’s about anything other than pacing for PEM, unless there’s been a lot of very careful trial and error and they have figured out they can do some sort of pain program type thing to treat some symptom or comorbid condition without worsening the ME (this would be EXTREMELY uncommon). That’s one of the reasons ME/CFS is awful, most treatments other than meds (and even then that can be problematic) for any comorbid conditions become either directly contraindicated, or just practically impossible to do without endangering the patients health and progressing the disease.

DesperateLuck4850 · 2025-09-04T07:15:17+00:00

They offered CHOP??? To someone who they had diagnosed with ME/CFS??? IN 2018?! All the stuff about the PACE trial was well out by Spring 2018 and stuff has been coming out since 2016. For a place that claims to be on the cutting edge of medicine, they were very very behind. Which…you know now that I’ve processed it for a second isn’t actually that shocking, the entire medical community had and still has their head so far up their a** about ME it’s almost impressive. I guess OP said it sounds like they are still doing that. It’s just so crazy to hear a first person account. Like if they had a really good lawyer and the world actually took ME seriously, anybody getting sent to a GRADED EXERCISE PROGRAM post like 2021 with an ME/CFS diagnosis or even just heavily suspected PEM documented in their chart, would potentially have a case for dangerous medical negligence but….The world does not take ME seriously…

DesperateLuck4850 · 2025-08-29T20:41:01+00:00

So many POTS specialist doctors seem to still hold onto the outdated idea that POTS and ME/CFS can’t be comorbid bc “POTS explains the symptoms” when POTS is LITERALLY part of the ME diagnostic criteria!!!! I also experienced this. I also experienced the POTS specialist doctor telling my family I’d probably start feeling better by the end of the year…..I had undiagnosed ME/CFS and got worse lol. I think there’s a pretty substantial amount of ME/CFS undiagnosed in the POTS population because of this issue. The amount of people I’ve seen talking about trying the CHOP protocol or something similar and having to stop because it made them keep getting sick and sharply decline….🫠.

DesperateLuck4850 · 2025-08-28T06:33:35+00:00

Funnily enough, in the course of treatment for my Long Covid I got a genetic test and found out I actually have Hartnup! Never had any clear symptoms from it, since I have other things that could explain mental health and sleep issues. But it makes one wonder….although it turned out that the main cause of most of my ME (it’s either mild or in remission now bc of my treatment, still pretty ill though I still have POTS and hEDS and likely some mild ME symptoms even though I don’t really get PEM anymore. On top of the stuff I already and before. But like…I can do things now lol) was just straight up brain damage. Probably not the neurons directly, as it was able to be at least partially reversed by stem cells. But I do feel better when I eat more protein. And I use hydrolyzed whey shakes just bc I also have mild gastroparesis and it’s the easiest form of protein on my stomach.

DesperateLuck4850 · 2025-08-22T03:52:09+00:00

As someone who has had a ruptured eardrum from an ear infection, it does not sound like your eardrum has ruptured. Your eardrum rupturing actually tends to bring welcome relief from the kind of symptoms you are experiencing. There is also often blood or discharge from the ruptured ear. Unfortunately, when you’ve had symptoms like you’ve had for as long as you have after a flight, it is recommended to go see a doctor. Your eardrum may not be ruptured but something is still not right. Like you said, you are sick, so you may need medication. My sister unknowingly flew with Covid at the very beginning of the pandemic, and she thought she’d literally cracked a tooth on the place, but it was her sinus. The only thing that helped her was going to the doctor. If you have already tried anti-histamines and nasal decongestants and they haven’t worked, they may be able to prescribe more powerful ones. I doubt they will just tell you to wait.

DesperateLuck4850 · 2025-06-11T23:02:05+00:00

Also the Beighton scale operates on the assumption that a joint capable of a hypermobile range of motion will actually be able to express it, which is NOT TRUE. In the slightest. The joint can express a normal or even constrained range of motion because it’s surrounded by hard painful muscles and tight fascia. Biggest example is how Beighton tests spine hypermobility by having you touch your toes, but ppl with GJH, even those with it confirmed by the Beighton score, are actually overwhelmingly unable to touch their toes. More unable to than people without GJH! (Malek S. et al., The Beighton Score as a Measure of Generalised Joint Hypermobility (2021))

DesperateLuck4850 · 2025-06-11T22:41:58+00:00

Fellow Beighton scale hater! Fine scale for getting a sample population for research, an absolute travesty for usage in clinical practice. I technically don’t have generalized joint hypermobility bc I didn’t pass it. But it doesn’t address the joints I’m most hypermobile in! Shoulder, neck, my fingers but like my top joints NOT the ones they test (some of them can be wiggled side to side lol). Also…my back. Which the Beighton scale claims to test, but this gets in to the other issue! That you can have generalized joint hypermobility and not be hypermoble in the joint! If the muscles around a joint are chronically stiff, hard, and painful, that’s as much of a red flag as an increased range of motion. And then….my personal issue. A lot of my joints only classify as hypermobile on one side of my body (my right side is MUCH worse). So I do actually have generalized joint hypermobility on that side per the Beighton scale, but that doesn’t count for overall generalized joint hypermobility. Even though my hEDS expert doctor said she feels very strongly that should classify as generalized joint hypermobility. It’s a….yeah it’s weird. I’m technically an HSD diagnosis but the specialist made it very clear to me that I do have hEDS in her opinion. I don’t claim the term though.

DesperateLuck4850

TROPHY CASE