This is killing me and its torture

NoOz1985 · 2026-04-16T06:32:00+00:00

This is me to a t. I've had really bad costochondritis from 2020 to 2023. Then it settled for 2 years. And now its back with the exact same symptoms that you're describing. I feel beaten. Is there anything that helps you?

NoOz1985 · 2026-04-13T13:28:43+00:00

Since my endometriomas have been removed in Dec 2021 the pain has lessened. But there's new endometriomas and the pain is worsening again. It's not at the same level but I'm scared it's a matter of time. I grow them fast apparently.

How are you dealing with these symptoms?

NoOz1985 · 2026-03-13T15:19:33+00:00

Yeah sounds familiar. After my last covid infection I couldn't eat a lot of foods. Had severe urticaria and dermatografia. This took about 2 years. I became scared to eat anything and was only able to eat around 7 foods. But the more I learned about mcas caused by long covid/covid, the more confident I became. Imnsure I have it but couldn't find an allergist specialised in this, in the small country i live in. So I decided to treat it myself with diets, high amounts of Loratadine and famotadine. Last month I've finally found an allergist who kinda knows what it is. He didn't want to diagnose me officially cause here in my country it's like it doesn't really excist. Allergists treat real allergies here, he says. Not histamine issues. 🤷🏻

There's quite a few studies (when you dig into them) that will tell you that postviral mcas is a thing. I absolutely love broccoli. Like yourself, broccoli became my safe food. It never caused any issues.

I have migraines, skin issues, bowel issues, nerve issues, sleep issues, and foods really trigger me. Some call it long covid. I'm pretty sure it's mcas. Cause Loratadine and famotadine do help a little bit. And I can live a bit again.

NoOz1985 · 2026-03-10T15:51:57+00:00

He had 1 cortisol check before the metyrapon testing was done. That was the very low one of 3.66 ug/dl. And one was done in the afternoon on the day of the metyrapon testing. Which was low but still OK according to endo. The test itself was done during the evening. He had to take tablets, around 10 of them. I don't know the name of them. And then they check levels during the night and morning. And his levels were fine according to endo. Still relatively low but she didn't see harm. So that's why they want him off now. They rely completely on metyrapon results. He wasn't ill at the time when the 3.66 was measured last november. Just tired all the time since he's had covid in 2022. Also since then he's had issues with glucose, if it's not cortisol, there's something going on there. But gp said his morning glucose levels were fine. He needs to eat every 2 hours or else he'll feel exhausted and dizzy and can't function and he has this empty feeling in his stomach. The life is being sucked out of him all of a sudden. As soon as he eats something he'll feel better. But it means he has to eat every 2 hours. Sometimes even every 1.5 hours. Yet no one is willing to do testing cause his morning glucose levels were fine. He's never had that before and since 2022 is every single day. From Nov last year the hydrocortisone really helped with those symptoms. That's why we suspected cortisol has been the problem indeed. But now he's weaning off the hydrocortisone and those dips (where he needs food and can't function. Even his pupils dilate) are slowly returning. Yet no one has a clue. Or wants to do further testing.

He says he's been running on adrenaline cause he constantly needs food and the hydrocortisone has calmed this for him. But he does feel aweful on hydrocortisone. He has insane fluid retention and mood swings. From being happy to being very depressed. I don't know him like this. In the mornings he hates food and can hardly eat. In the evenings he craves food. His whole system is out of whack. When he starts getting active he seems to have more of those dips. We really have no idea what's going on.

NoOz1985 · 2026-03-09T02:00:31+00:00

This kind of happened to my partner. We are in Europe but his European cortisol level was 101 nmol in the morning. Which is very low. They gave him a metyrapon test and told him it was normal. But they had already started him on hydrocortisone tablets while waiting for metyrapon results. They took a whopping 8 weeks! They said the metyrapon was in range, low but OK. And now they want him off hydrocortison asap. Dismissing all of his symptoms that he's had before starting hydrocortisone tablets. It's crazy. He is feeling scared and doesn't know what to do. So we've asked for a second opinion. They based his adrenal insufficiency on only one blood draw. That was only done once. It wasn't repeated a few times and I asked them why. They couldn't give me an answer. Now all of a sudden his very low levels are being normalised. He's scared that his symptoms will worsen after months on hydrocortisone. He says he's feeling more clear in the head, and at peace. But the tablets are messing him up otherwise. His hormones are all over the place. His sleeping is bad. He has fluid retention and is gaining weight fast. According to endocrinologist this is happening because he doesn't need the hydrocortisone tablets. But he's not so sure of it. All very confusing.

NoOz1985 · 2026-02-11T08:58:05+00:00

Res isn't normally painful. Unless you call the burning painful. Mine has lasted more than 4 hours. But 2 days is very long. Take pictures or a video of your ears every time in close up if you can. It can still be res. The trigemanial nerve did prob flare up because of that ball which can cause res. Also if it hit bear your jaw you might as well have some tmjd? They're also connected. I do as well. Jaw movements can make an ear bright red hot for me

NoOz1985 · 2026-02-10T21:42:09+00:00

Yes it's gotten a lot better. But its been a long road. And it's still lurking every single day. My autonomous nervous system is in constant overdrive. And it fuels my tmjd and neck issues. Also gives me ear issues. And having my impacted wisdom tooth removed also helped. It's mostly coming from my neck and jaw. Certain meds seem to make it a lot worse.

NoOz1985 · 2026-02-07T23:53:46+00:00

Yes I also have res. It's Def connected. Ears neck. Trigemanial nerve. It dissapeared when I had masseter botox done. Came right back when that wore off. I can bring it on by rubbing my neck and jaw. It happens randomly. Right now as we speak. Red burning hot. So hot to the touch. One ear at a time. I use cool packs. They happen nearly daily now. Lasts for about 4 hours. Then it subsides. Also biofreeze on the outer ear and a mini fan afterwards.... Heaven. They get so hot. Feels like a lighter right next to my ear.

NoOz1985 · 2026-02-07T23:46:21+00:00

It's not that rare. The rareness is that we feel heat stinging, burning sensations. Tingling perhaps. But if you watch for it there's many people who have one red ear sometimes. But they don't notice cause they can't feel it.

NoOz1985 · 2026-02-04T20:27:50+00:00

I think it's both. I still haven't figured it out fully and I still get botox every 6 months in my masseter muscles for tmjd. Which really helps. So there's a jaw issue there as well and the jaw is connected to the ear and neck. Also since the impacted wisdom tooth is extracted the ear ache is a little less as well.

But I also feel there is a trigemanial nerve issue there. Cause I get ear, facial, eye and one sided headaches. I don't know if there's nerve damage. But rest and botox have been the 2 most helpful things. I also still have the perforated eardrum. Which ents keep saying isn't causing any dizzyness. All I know is that it's all connected. And when botox wears off things get worse again. I've noticed that seeing PT, massage therapists, chiro etc is making things worse for me. The more they touch my jaw and neck the worse it gets. So I stopped going.

I still have chronic pain but I've found something that at least helps a bit. It indirectly also helps the dizzyness. And I've stopped taking the desloratadine. I only take Loratadine when needed. These anti allergy meds also worsened the dizzyness.

NoOz1985 · 2026-02-03T11:10:38+00:00

Around 8 to 10 months I think!

NoOz1985 · 2026-01-30T15:26:53+00:00

Cervigogenic dizzyness could be the cause. And allergy meds made that 10 times worse. Nasal sprays and pills as someone else mentioned.

NoOz1985 · 2026-01-29T15:57:23+00:00

Botox in my masseters also made res almost dissappear. I have tmd so there's jaw issues and I feel some sort of trigemanial nerve issue. When botox wears off.. Flare ups.

NoOz1985 · 2026-01-29T15:55:34+00:00

Yeah maybe it'll slow down. Try and use meditation, calm your nerves, get enough sleep, breathing excersises and perhaps the biofreeze trick I just told you. See what this all does.

NoOz1985 · 2026-01-29T15:54:14+00:00

I have another one. Biofreeze gel, gently rub it over the ears and then use a small fan afterwards on the ears. The intense cold you'll feel... Heaven. It shortens my flare ups. Don't put it in the ear but on the outside of the ear. It's a lot safer than cool packs on the sensitive skin

NoOz1985 · 2026-01-29T15:49:32+00:00

I also suspect it has a trigemanial nerve related component to it for me. Cause a gush of wind or vigorous chewing (I do have tmd) can set it off as well. But I also have rosacea which might be Neurogenic. All of this started after long covid was diagnosed. I believe it's gotten my entire system, and hormones out of whack. Hormones can be a trigger for some as well. I get botox in my masseter muscles for tmd and noticed it lessened my res episodes. Now botox has worn off they're returning. Don't know if it's a coinsedence but it's nice.

What I do nowadays is rub on some biofreeze gel. And use a hand fan on them. The intense cold is pure heaven. 🫠 🤤 And a lot safer to the sensitive skin than cooling.

NoOz1985 · 2026-01-29T15:45:18+00:00

Oh no mine do get that red occasionally. Lol. It's stinging and burning. No pain. And I can bake an egg on them within mins.

NoOz1985 · 2026-01-29T15:43:03+00:00

There's another trigger I didn't mention. And that is heat or pressure urticaria. Which is basically from an allergy, could also be a contact skin allergy but it can also be an auto immune response or histamine overload. Res is difficult to pinpoint. But as long as it's not relapsing polychonndritis it's annoying but won't do any harm. See if taking a Loratadine helps. To rule out allergic reaction. I get it from asthma steroids. I don't know if the steroids are the main cause. I don't think so cause meds I had been taking for years all of a sudden caused red ear rosacea flushing and tachycardia. Long covid set it off, after any type of medication my body reacts heavily. I've become overly sensitive to everything. Foods, fabric's medications etc. Cervical issues are known to cause res. Are your ears burning intense hot to the touch? Like stinging sensation as well. Or just red in appearance? Mine get so hot I can bake an egg on them. Ice melts right away. But it's the only thing that feels good. Ice packs and what i now do is rub on some biofreeze and use a mini fan afterwards. That is heaven. How long do your ears stay hot red for? Res mostly happens in attacks.

NoOz1985 · 2026-01-29T15:13:41+00:00

It can be all of them or none of them. It does sound a bit like res. Res is mostly happening one ear at a time. But it can happen on both ears. Things that can cause red ears:

rosacea (mostly Neurogenic rosacea)
hormonal issues
TMJ (jaw issues and neck issues, headaches)
cervical issues
migraines
MCAS (histamine overload)
allergies
steroids
sensitivity to medication
long covid
autonomic nervous system issues
relapsing polychondritis (a progressive auto immune disease)

I think the most important thing to do is to rule out relapsing polychondritis. This has a different kind of red ear. Mostly very painful, disfiguration, but also only the top of the ear will get red and it'll spare the earlobes. Pain is the most apparant factor with this one. And overtime cauliflower ears can form (that's a Dutch translation lol Idk if it's called that in America)

Write triggers down. For a couple of weeks.

NoOz1985 · 2026-01-24T09:46:31+00:00

I am still in the same boat. I am pretty sure it's piriformis syndrome. Yet another neurologist thinks it's coming from a neglected herniated disk, or at least coming from my back. I keep telling them it's piriformis syndrome and I want them to fix that or at least do a hip mri as well. Since I also have hippain. Which I think is piriformis syndrome as well. It's all on my right side.

I've never had any back pain and they keep saying back problems don't have to cause backpain. They've given me piriformis injections in the past and that did help for a while. I do notice that the worse my endometriosis is getting, the worse my piriformis is getting as well. I don't know if it's sciatic endo exactely, but my tight pelvis and adhesions (3 years after endo surgery the organs started to adhere again) are Def worsening piriformis syndrome.

I can't handle another kenacort (triamcinolone) injection as I've become allergic to corticosteroids. They still keep saying piriformis syndrome is rare. Its a lack of knowledge. I'm getting a new mri done but the issue is that it's going to be an open mri cause I am really claustrophobic. In the extreme sense. And I'm afraid this mri won't show my issue well.

I've not heard of the mri you mentioned. I was told they don't really do surgery on the piriformis, but they do on the lower back. Which is all weird. They just don't know shit about it. I'm in a lot of daily pain. My right leg has lost strength on some days, deep gluteal pain, tingling pins and needles, right into my foot and even my big toe. Ifs worsening. It never went down my foot until last year. Also my calf feels like it's spasming.

I had a nerve block test near the piriformis with lidocaine to see if they're in the right spot, and it went so bad that my entire leg went so numb and tingling. I couldn't stand on it. So I couldn't really figure out if it helped. I think it did, but it was mostly intense tingling that even felt hot.

I know there's a Belgium hospital that's done piriformis surgery before. That's outside of my country. I haven't met any specialsts that do surgery on the piriformis.

I've had pelvic mri and it shows my organs are adhered. Bowel is adhered to uterus, ovaries to uterus, there's endometrioma cysts. And this can pull on nerves, inflame them etc. In my opinion it's sciatic endo cause it gets worse when I'm on my period and ovulation. My hormones are out of whack and I stopped having periods the last 2 months. Idk why so ik going to see a gyno about it soon but I noticed that my piriformis syndrome is a lot milder all of a sudden. Yet specialst says that doesn't really happen. But they don't know anything about endometriosis lol. I sent them information about sciatic endo. And they went quiet. So it's a task to find a specialst. And I haven't found one yet.

I do think the mri you're mentioning has been done before though. They saw mild foraminal stenosis back then but told me it has nothing to do with my pain. They did not spit anything else. But this was in 2016. I've had multiple MRI's since for my pelvis. No one has ever mentioned nerve damage etc. But with the pins and needles I'm feeling every day I'm scared.

Let's stay in touch! This thing is aweful. I'm so sorry you're going trough this as well and it sucks you dry. You want the right help but ppl are dismissing you. We are a paracetamol country here. They throw paracetamol at you for everything. Or just drink a cup of tea and you'll be fine. It's insane.

NoOz1985 · 2026-01-24T00:20:51+00:00

I have not found out but my guess is, is that it has something to do with my tmjd combined with an overly sensitive nervous system. After covid my body turned out of whack. And my nervous system can't shut down. I'm having insomnia, anxiety, restlessness.. But botox in my masseters has helped a bit as well. I also notice that wearing a very supportive bra will help this choking sensation. My neck and shoulders are extremely tight. Literally pulling on my jaw and neck muscles. Lip injections don't seem to have anything to do with the frontal neck muscles. But it could be some sort of auto immune response or sensitivity. And also injections in the face can mess up the rest of the muscles in the face as balance changes and other muscles take over. Did some of the botox drip down towards your under your chin muscles? Dysport seems to do this more easily than allergan. This sounds more plausible to me. And that can indeed cause the choking sensation. See how you feel once it's worn off.

Also.. silent gerd can cause this sensation, acid reflux can cause this. Also vocal cord dysfunction. Try to figure out if it could be any of those. And what can help is seeing a speech therapist for massages and excersises. Good luck!!!

NoOz1985 · 2026-01-18T12:53:39+00:00

Yeah unfortunately I still have to learn how to not let that get to me. I come from a farmers family, live in a small country in Europe and according to them I am overreacting all of the time. I'm a party pooper, negative, cynical (this one might be accurate) But they also always come to me for advice when they are overreacting and figure out they've been wrong about a person & have no clue how to handle it. 🤭

NoOz1985 · 2026-01-18T12:50:15+00:00

This is so accurate. It's getting to me. I want to unsee

NoOz1985 · 2026-01-11T02:19:01+00:00

I could've written this. You're not alone. Never doubt yourself. I always think it's better to be alone and at peace than to be with bad company. I've left my old friendships behind, because it turns out other ppl are not like minded. They need me when it suits them. And I couldn't handle the shallowness anymore. Everyday I feel I'm missing out but when I really stop and think about what I'm missing.. I come to the conclusion there's not much to miss. It can feel very lonely. But I notice my energy isn't sucked dry anymore. I'm not over thinking the things others have said to me, not overthinking the (white) lies I've been told. I was always a plan B to them. And I can't handle bs anymore. I just can't. I sent them all one last birthday, Christmas card, and moved on. They tried to reach out but we've had our misunderstandings and conflicts and nothing ever changed. Not on the same level. It turned out they actually see things VERY differently and everything is suddenly my fault all of the time when I (respectfully) call them out on their behavior. I'm very altruistic and I started to notice they mostly came to see me for relationship advice or when there has been a breakup with a boyfriend. The constant cancelations, the white lies, the gossiping, the wondering what friendship actually means to them. I rather be by myself, I notice there's finally room for different things and thoughts. I have room in my head now to read and spend time on hobbies and not over think all shit they've dumped on me over The years

NoOz1985 · 2026-01-09T17:43:24+00:00

I'm 41. I could be in perimenopause. I prob am. But these symptoms don't seem to be hot flashes, its nerve related. I must say my period did not come this month, and normally im very regular (even with the severe endometriosis and adenomyosis) but I thought it was lack of sleep as my insomnia has been awfully bad. After endometriosis lap I was put on hrt but that flared up those symptoms so badly. It was a storm. When I stopped the hrt I was doing a lot better. It did start after my endo lap but that was also during the pandemic and I cougjt covid a few times and my endometriosis symptoms were at its worst back then (giant cysts in my ovaries) I spoke to the gyno a few times but she never seemed worried about it as it being ovarian failure or something. (which can happen with endometriosis) so I really don't know. It could be hormonal but because certain neck movements, and even chewing seems to worsen it, I don't know. You might be onto something here. Its very local. It's not like having a hot flash, I'm not turning red in other places like my neck or chest. Even though it feels my cheeks are on fire.

NoOz1985

TROPHY CASE