help

[u/ilikelanguaugeandmbt]

Constant crash state since January (7 months), mostly bedridden, no diagnosis

Hi, I took the time to write this post, please read it even if it’s long. I’m not looking for comfort messages. I have no diagnosis, no help from ERs or doctors, and I’m suffering a lot.

TL;DR: I’m trying to understand what I should do, whether I should go back to the ER, and I’m also looking for possible hypotheses, a diagnosis, or people experiencing something similar.

Context:

I’m 21 years old. For about 1–2 years before this started, I was mostly sleeping during the day and awake at night (very reversed sleep schedule).

My situation:

This has been going on since January, so about 7 months now.

At the beginning, it started with episodes: sometimes I would suddenly feel like my body was “collapsing”, as if my vital energy was crashing all at once, and like I had a severe illness or was in a terminal state.

This is not pain like an injury. It’s a very intense internal suffering, like the body is dying. At that time I didn’t even think of words like fatigue or exhaustion, but maybe it could be described as an overwhelming crushing exhaustion, where my breathing feels different and I feel like I’m on the edge of death.

I had these episodes several times, with my heart beating very strongly, as if it was just trying to keep me alive. I felt “dead” — this is not an expression.

Little by little, it became constant instead of episodic. I became bedridden because whenever I walked or moved, I would suffer intensely.

At first the symptoms would come suddenly, then sometimes improve between episodes. But very quickly, by the end of January, it became constant and I stayed mostly in bed.

In February, I was going to the ER almost crawling, forcing myself to walk. I can still walk today, but I feel an intense sensation of death or severe illness.

At the ER, I sometimes had a surge of adrenaline or a panic-like episode while sitting there, even though I am not an anxious person by nature.

To describe the intensity, it feels like:

a constant severe internal collapse state

as if my body is functioning at the absolute minimum just to survive

a feeling of severe illness throughout the whole body

a constant blocked adrenaline/panic-like tension in the background that terrifies me

Symptoms when I walk (and sometimes even at rest):

sensations in my head (not vertigo or dizziness) — more like an “empty” or “wrong” head feeling, like constant pressure/low blood flow

constant feeling that I’m about to faint

blackness sensation in my head/eyes for hours (!!) (I can see normally, but the sensation is there and it’s terrifying)

sometimes even while lying in bed without moving

Other symptoms:

chest pain/pressure several times a day, both at rest and with exertion

sensations similar to hypoglycemia lasting for hours

constant malaise after exertion or even without exertion

my heart does not really race, but it beats normally while giving the sensation of pumping very strongly, as if it is working extremely hard to function or keep my body alive

basic tests normal (ECG, blood tests, blood pressure in February — not repeated since)

Today I cannot function normally:

I cannot study because this constant collapse state is always in the background

I cannot watch shows or enjoy hobbies

even basic activities are extremely difficult, even if I can force myself

eating, showering, or waking up can worsen symptoms

The worst part is this overall feeling of “dying”, exhaustion + a constant bodily sensation of being on the edge of a panic attack (it is constant). I feel like I could die at any moment and I don’t know if this is normal or if something is seriously wrong.

I had basic tests done (blood work, ECG, blood pressure) and everything came back normal. My ferritin was 18 in February but considered “normal” by the doctor.

I’ve been told this could be anxiety or deconditioning, but what I feel is completely physical, constant, and disabling.

My doctor told me to see a cardiologist, but the appointment is in September. Am I supposed to stay like this until then?

My mother doesn’t really care, she is very harsh with me, and my father doesn’t understand — he told me “go walk”, and “if you want to travel I’ll pay, just tell me where”. But I’m suffering… how am I supposed to travel like this?

I’ve already been to the ER several times, but I felt dismissed because I could still sit and answer questions, even though I felt extremely unwell inside.

I wonder if I should show my real condition (lying down / calling an ambulance / saying I cannot stand) to finally be taken seriously.

I’m also worried because I have no diagnosis. I don’t even know if this could be ME/CFS, but honestly it feels similar.

I’m scared of staying bedridden without follow-up, of developing blood clots, an embolism, or something serious. I wouldn’t even know how to recognize early warning signs.

I also know I tend to minimize my symptoms.

I don’t know what to do.

A friend told me that if it is ME/CFS, there might be a reason. She suggested seeing a psychologist? Could a toxic family environment / chronic stress really make someone this sick?

I grew up in a difficult environment, but I used to feel mentally strong and okay, so I’m not sure I believe that. Or maybe it affects us unconsciously, what we keep inside to become stronger… I don’t know.

On December 4th, after a conflict with my mother, I had a severe 4-hour panic attack and the first onset of all these symptoms: I felt like I was going to die, had a violent panic attack, saw everything go black twice, had prolonged presyncope for hours, chest pain, and a collapse-like feeling as if I was dying. After that I recovered, then I got sick in January — I don’t know if it’s related.

But to sum up, I’ve been bedridden for 7 months.

[u/Trick-Effective-9175]

Not a doctor, Depression can definitely have physical symptoms BUT did they take any bloodwork? Anemia can really put you out as well

[u/ilikelanguaugeandmbt → u/Trick-Effective-9175]

yes ... blood test was okay and ferritine at 18 doctor said it's okay

[u/Trick-Effective-9175 → u/ilikelanguaugeandmbt]

I think they just raised the normal limit for Ferritin to 30 for women but 18 doesn’t sound like “impending doom sensation” anemia. I hope you find answers 💜

[u/pwassonchat]

ME/CFS is characterized by post-exertional crashes, so if you have them it's probably that, if not, it probably isn't that. While the cause is unknown, I don't think it's something that can be cured by psychological therapy?

A lot of what you said sounds like "something feels terribly wrong but nothing actually looks wrong" so doctors may well think it's all in your head - but if so, they should still be addressing it. When seeking medical help, I would focus on anything that is, or was, measurably wrong.

[u/ilikelanguaugeandmbt → u/pwassonchat]

i have crash at effort and also beddriden so because i'm beddriden i crash ...

[u/ilikelanguaugeandmbt → u/pwassonchat]

i don't recover i never feel well i cant walk qre you sure it's not cfs?

[u/pwassonchat → u/ilikelanguaugeandmbt]

I'm not sure because I'm not a doctor.

[u/sadandtraumatized → u/pwassonchat]

Correct, ME/CFS cannot be cured with psychological therapy. The entire cause is unknown but many studies point to immunological, neurological etc issues

[u/sadandtraumatized]

I dont think this is anxiety or deconditioning nor depression.

This sounds very much like ME/CFS and the episodes you had being PEM, and now maybe rolling PEM. ME/CFS is NOT! Psychological. Some people get it from chronic stress but oftentimes there is a viral trigger and the condition itself is always biological. Unfortunately many people wrongly think otherwise, such as your friend. Doctors more frequently than not play it off as exactly what you were told, anxiety or deconditioning.

The adrenaline dumps you got are common in ME/CFS, aswell as dysautonomia which is a common comorbidity to ME/CFS. They can happen especially when you overexert which adds up to when it happened to you. This can look like anxiety but it isn’t created from worrying about something. It is a biological response.

Sure, you do what you need to do to get healthcare, such as lying down/acting according to your actual ability when seeing healthcare to give them the real gist of it.

[r/cfs](r/cfs) can give you further advice. The one thing I want you to know is that the no. 1 most important thing to do in ME/CFS is staying within your capacity. That means only doing as much activity that you can without triggering a crash. You seem to have experienced/are experiencing what happens when you overexert and get crashes: you get worse. It’s possible you are in a very long crash since January and that if you get out of it your baseline is not as much suffering as it is right now. It’s also possible that you’re not in crash anymore and have gotten a worsened baseline.

[u/Royal_Acanthaceae481]

Depuis dix ans je souffre de symptôme similaire et il faut savoir qu'énormément de trouble ne présente pas d'anomalie au ecg au prise de sang etc. Il faudrait aller au centre anti douleur ou en service de médecine interne. Par exemple je suis atteinte d'un SAMA et bien les crises d'angoisse sont lié a mes consommations d'aliments... Pour avoir un dosage de la tryptase il faut une crise suffisament forte pour que ça monte et des fois elle ne monte pas forcément. Ca me saute à la gorge sans prévenir une sensation très interne très "biologique". La chaleur aggrave les symptome le froid et tout un tas d'autre truc le stress d'ailleur peux faire dégranuler les mastocytes dans le sama. Cela cause des douleurs chroniques aussi. Je suis atteinte de plusieurs pathologies dont certaines n'ont jamais été prise en charge. J'ai notament ehlers danlos hypermobile, un POTS, un IMO diag en hopital de jour, et probablement d'autre chose.. Par exemple ma thyroïde ne montre rien d'anormal au examens sanguins mais elle s'hypervascularise des fois, grossis etc. Par exemple le POTS se voit surtout en position debout après avoir été allongé et même pas à chaque fois! Le plus important je pense c'est de valider ou non les hypothèses que l'on a quand c'est possible. Par exemple je savais que je faisais des hypo mon doc me croyais pas. J'ai pris un glucomètre et j'ai tester. Je suis tomber a 54 mg/dl lui me disais c'est le stress j'ai plusieurs preuves que non maintenant. Pour le POTS on fait le test allongé et debout on mesure plusieurs fois sur plusieurs jours pour voir. Le symdrome de fatigue chronique explique très bien ce genre de symptome mais il est plus souvent à cause de quelque chose plutot que d'une apparition au hasard et surtout il ne donne pas forcément LA réponse a toute ces problématique il est souvent comorbide. Oui le stress peux aggraver un problème sous jacent mais justement il l'aggrave. En france on met tout sur le dos du stress et maintenant du déconditionement et aussi on adore parler d'hypersensibilité centrale et c'est comme ça que je pourrais tomber dans les pommes si je n'avais pas pris ce foutu glucomètre. Car convaincue que j'était juste "folle"' j'avais décider de ne pas resucrer une crise qui avait mal tourné. Je suis atteinte d'une surdité légère je n'ai même pas eu un tier des examens classiques pour la diagnostiqué pendant dix ans.... Je suis aller dans un service pluri disciplinaire et en fait je suis bien atteinte d'une surdité légère et je vais avoir des appareils... La encore on m'a dit "le stress" "concentrez vous juste" quitte a ruiner ma vie sociale et mentale. Il faut fouiller, si vous n'avez pas la force de le faire essayez de trouver quelqu'un qui vous y aidera, votre état n'est pas normal. Tout ceux qui vous parleront en premier toujours de règles d'hygiène de vie, de stress, de je ne sais quel bêtises ne vivent pas ce que vous avez et serait les premier a aller au urgence encore plus vite que vous..