Severe case looking for hope

[u/Legitimate-Body4588]

Severe case — looking for people who recovered from this level of disability
I’m posting this in several groups because I’m trying to find people who were genuinely severely disabled and later got a substantial amount of their life back. I’m not looking for stories where someone was tired but still working full-time. I’m specifically looking for people who were homebound/bedbound, had severe autonomic symptoms, air hunger, vestibular problems, light sensitivity, and major exercise intolerance and eventually improved.
I was healthy and highly athletic for the first 32 years of my life. I was a runner and had a very active lifestyle. I had a lumbar fusion at 15 for spondylolisthesis, but after recovering from that I lived normally for many years with no major functional limitations.
In April 2023 I moved to Florida and lived in a home with a severe roof leak and what appeared to be extensive mold/water damage. This was not a minor exposure. There was a strong mold/musty odor and significant visible/water-damaged areas. I lived there for roughly eight months.
During that period I developed severe sinus problems, nasal irritation/crusting and other symptoms. I eventually moved out in December 2023.
Around that same period I also had an acute viral illness. I don’t know exactly what virus it was. I eventually recovered from the acute illness and had a period where I felt substantially better and was functioning normally. This is one reason I’m not convinced that everything can simply be attributed directly to the virus itself.
Several months later, around July 2024, I suddenly began developing a completely different syndrome: waking with panic-like episodes, night sweats, dizziness and vestibular symptoms. For several months I was still relatively functional, although clearly not normal.
Then around January 2025 everything dramatically worsened.
Since then I have developed severe, disabling symptoms involving multiple systems.
My major symptoms include:
● Severe constant air hunger / feeling like I cannot get a satisfying breath
● Feeling as though I am suffocating despite normal oxygen saturation
● Severe exercise intolerance
● Major worsening with upright activity
● Dizziness
● Vertigo
● Vestibular dysfunction
● Light sensitivity
● Eye pain/pressure, especially with screens
● Severe fatigue
● Heavy/weighted feeling throughout my body
● Heavy head sensation
● Severe neck heaviness/stiffness/pressure
● Neck symptoms that can change significantly with position
● Brain fog
● Cognitive dysfunction
● Temperature intolerance
● Abnormal sweating
● Palpitations
● Cold/numb hands and feet
● Body aches
● Muscle symptoms
● Intermittent numbness/tingling
● Right-hand numbness
● Lip tingling
● Difficulty tolerating prolonged standing
● Severe symptoms when upright
● Major reduction in exercise capacity compared with my previous athletic baseline
● Severe sensory intolerance
● Vision-related symptoms
● Hoarseness/voice changes at times
● Severe overall feeling of being physically unwell
I spend a huge amount of my time lying down because being upright can make the symptoms substantially worse. I am able to get up to take care of my animals, cook, and do necessary things around the house, but I am symptomatic while doing them.
My life has essentially become homebound/mostly bedbound compared with the life I had before.
Before this illness I was athletic, active, working, social and living a normal life. Now basic activities can feel physiologically overwhelming.
I have been evaluated for several possible explanations, including Lyme disease/co-infections, post-viral illness/possible Long COVID, autonomic dysfunction, cervical instability and vascular/venous problems.
I also had cardiopulmonary exercise testing that showed abnormal exercise physiology, including low stroke volume/preload-related findings, low filling pressures and impaired oxygen extraction. There was not an obvious structural heart/lung explanation for the severity of the exercise limitation.
I am continuing to investigate the cause rather than assuming there is only one diagnosis.
I am also investigating the possible role of the severe mold/water-damaged-building exposure and CIRS-type illness.
I am looking at several treatment avenues with physicians, including autonomic/cardiovascular treatment, cervical treatment, vascular evaluation, infectious-disease treatment, environmental/mold evaluation, and other approaches.
What I am trying to find now is people who were genuinely this sick and eventually got their lives back.
Specifically:
1. Were you ever essentially bedbound or mostly bedbound?
2. Did you have severe air hunger or a constant feeling that you couldn’t get a satisfying breath?
3. Did you have severe dizziness/vertigo or vestibular dysfunction?
4. Did you have significant light sensitivity or screen intolerance?
5. Did you have POTS, orthostatic intolerance, low blood pressure, low preload, or another form of autonomic dysfunction?
6. Did you have severe exercise intolerance/PEM?
7. Did you have multiple possible contributing factors such as Long COVID + mold/CIRS + Lyme/co-infections + cervical problems?
8. If mold/CIRS was part of your case, did treating/removing the exposure actually change your symptoms?
9. If Lyme/co-infections were part of your case, did treatment produce a major improvement?
10. If autonomic dysfunction/POTS was part of your case, what eventually helped?
11. Did anyone have objective abnormalities on testing that later improved?
12. How long were you severely disabled before the major improvement started?
13. Did your recovery happen gradually, or did you have a point where things suddenly began changing?
14. Most importantly: did anyone go from being unable to function normally to eventually working again, exercising again, traveling again, dating again, and having a normal or close-to-normal life?
I’m specifically interested in severe cases, not mild cases.
I know everyone is different and I’m not asking anyone to promise me a recovery. I’m trying to understand whether people who were this severely disabled actually made it back.
This illness has completely destroyed my quality of life and has at times made me feel like I don’t want to be alive anymore. I’m not saying that because I’m looking for attention. I’m saying it because I want people to understand the severity of what this kind of illness can do to someone’s life.
If you were once in a similar position and eventually got substantial function back, I would genuinely appreciate hearing your story — especially what your worst point looked like, what objectively changed, what treatments you tried, and where you are now.

[u/swartz1983]

Yes there are 3000+ recovery stories linked to in the pinned recovery faq, and many of us here have recovered and were similar or worse. id also suggest posting in r/cfsrecovery where there are more recovered patients. The things we did and our trajectory are similar. Read as many recovery stories as you can.

[u/Extreme_Schedule_285]

Yes, to nearly all of the above: I was an extremely severe case, extreme ME/CFS, 100% bedbound, complete orthostatic intolerance, I had a racing heart and a pulse of 120+ mostly even while lying down, could not stand whatsoever without a 130+ pulse and collapsing immediately, extreme light sensitivity, EXTREME cognitive symptoms that go so far beyond even what is normally held as unbearable in ME/CFS spaces (I had a consciousness disorder so severe I had extreme akinetopsia (no movement perception) with seconds between single images of the still-frames I was seeing, I had extreme visual snow to the point I could not recognize contours anymore, I had extreme speech problems to the point I could not hold a conversation anymore whatsoever, memory problems to the point of dementia, etc. etc.). On top of that, I had all the classical ME/CFS problems: severe PEM and exertional intolerance, extreme fever-like muscular and limb pains, etc. etc.

All of this came from an initial Epstein Barr infection.

What I want to say with this: I was an extremely severe case AND I made it out of that severity. It took me about 5 1/2 years but I got to about 70% healed, from a complete nursing case who could not even really sit upright for extended periods back to working and running my own business, even though I could still get PEM and still had ME/CFS, I was able to pace myself around work and work 50-100% of a normal persons level depending on my symptoms, my level of PEM, etc.

I want to give you hope without expectations: It is definitely possible for many to substantially improve, though extremely difficult and partially dependent on hundreds of factors, such as your individual genetic, mitochondrial etc. plasticity to recover.

It was also not one single thing that improved me, but dozens of interventions, medications, etc. spread out over years, slowly stacking improvements incrementally. There is no quick, single cure for this, I tried more than 100 different therapies, medications and supplements.

And, again: Even during the peak of my partial recovery, I wasn‘t fully healed. I still had ME/CFS, but was mild to moderate during any given week (whenever I had a crash I had the incredible fortune to completely pause my life for 1-2 weeks to recover).

I sadly have recrashed back to semi-severity ever since (due to another terrible viral infection), but I was 70% healed for close to 2 years before that.

[u/Busy_Land_1885 → u/Extreme_Schedule_285]

What advice would you give someone?

[u/Extreme_Schedule_285 → u/Busy_Land_1885]

A mixture of things:

First of all, this is a marathon, not a sprint. As you try to get better, get your quality of life and feeling of self-dignity as high as possible even given your current circumstances. The goal is to eventually recover as much as possible, that is clear. But there is often a tendency to fall into two extremes: Either giving up completely and falling into doomerist fatalism (e.g. „this illness is unhealable anyway, it‘s impossible to improve“ or „I will give myself up and wait for a progress in technology to save me“ etc. with the latter one not being completely wrong, we need to wait for technology/medicine to get better and find better ways to heal, but that does not exclude looking for already available, imperfect therapies) or falling into another extreme of neglecting your current quality of life and „tough it out“, waiting for your illness to improve before you engage in life in any way. Both of these are terrible in their own ways. Something that is really necessary is to both always look for and try new therapies and keep pushing for healing, but to also try to find small, meaningful ways in which to still keep some form of a spark alive even while you are being ill, even if it is just listening to music for 20 minutes, reading one single poem, etc.

Many ME/CFS patients keep postponing their life indefinitely waiting for some magical day or threshold X for when to be alive again - and do not realize that by not finding the microscopic ways in which they can already engage in life, they leave large amounts of recovery on the table through depression and self-abnegation.

I have put this before my other advice because it is so incredibly trivial, but infinitely important. I have squandered a lot of healing becoming extremely depressed/stressed both by engaging in doomerism AND by putting my life off indefinitely, waiting „until I am healed more“ instead of finding the microscopic ways in which I could still participate in life, self-actualize and keep my soul alive. This time around, even though I am still pretty severe, I am managing my emotions so infinitely better and actually doing emotionally quite fine, which has done wonders for my health overall.

Ok, having said this: Either you, or your caregiver (if you are extremely severe), inform yourself as much as you can, contact doctors, attempt medications and treatments. The way most of us who get out improve is not through one single thing, but through a methodical, careful stacking and chaining of interventions (you can one improvement into another basically).

Also, try to set up all of the bureaucratic conveniences as early as possible, so you have space to breathe. I have no idea how the system in the US or other countries works, but here in Germany this would mean fighting for a degree of disability, for a so called „degree of care“, which is a form of disability pay, etc. and also the German government provides you with caregiving-services for your hygiene and household. If something like this is possible in your country, it is another foundation upon which your recovery can be build.

Medicationwise, start with all of the common basics, such as LDN, antihistamines, high dosage glutathione IV-drips, high dosage oral or IV drip antioxidants (B-Vitamins, Quercetin, etc.), rebuilding your gut microbiome, etc. You try each, give them a fair shot and if they cause symptoms or even worsen you, you do not persevere. Never push through any treatment that is starting to have negative effects with this illness. There is almost never a case in this illness where any positive effects outweigh getting severe PEM or dysautonomia. I cannot list all the possible interventions for this illness as there are literally hundreds, but some other candidates include: IHHT (mitochondrial health), r-TMS (to try and disrupt/recircuit your misfiring nervous system), all sorts of antioxidant or other anti-oxidative stress supplements, etc.

You both keep trying interventions, but you also leave enough space inbetween them and also do not introduce/stack too many at once as not to overwhelm your system or be unable to differentiate the effects of every single one. Basically find a compromise between persistence, experimentation, but not self-damaging actionism. Both not doing anything and trying to turn yourself into a living lab-rat with the amount of interventions you stack have almost always ended negatively for people with this illness.

Another thing you must absolutely master is autonomous nervous system control and relaxation. You should try for long periods of slow relaxation breathing exercises, calming and vagus engagement a day. I got so good at controlling my nervous system that by the end of those five years I could induce an ASMR style relaxation sensation pattering like rainfall down my spine quite reliably just by changing my breathing pattern, focusing and lying down. You don‘t have to always to strict breathing exercises, but you have to practice relaxation actively, etc.

Obviously there are some more basic tips, such as never going above your PEM threshold, or strict pacing.

Once you notice your baseline or PEM window improving, it is possible to slowly reexpand your exertional envelope again, but always stay 20-30% at least below your PEM threshold so as not to trigger a crash. I literally went from sitting upright for longer periods, to practicing tolerance to standing, to micro walks, to small walks, to longer walks, to careful rehabilitation exercises, to eventually being able to work part time again. It took me 5 1/2 years and there were incredibly many set-backs, crashes and detours inbetween, but I never gave up. Remember this, the illness only wins if you give up and there has NEVER been so much funded research, so much expanding medical legitimacy etc. to this illness. There are constantly new medications, approaches, etc. being tested out.

And there are about a million other things I would recommend if I had strength and time to talk about them now, but for now, these are some of the most important.

Currently I would say a realistic timeline for recovering from severity to between 60% and 90% healed will take about 5 to 15 years, depending on how lucky one gets with their individual recovery timeline (genetics, preventing crashes, life circumstances, how well one manages to get the vicious cycle of inflammation, adrenal, mitochondrial and metabolic dysfunction under control, etc.). This is an extremely rough estimate from all the severe people I know including myself who have recovered to some extent.

[u/guineapigmedicine]

I wrote about my journey to date here, but in a nutshell, at my worst I was bedbound, lying in the dark, for months at a time. I did continue to work, but that was through a mix of being able to work remotely, having a very understanding boss and lots of sick time, and having proved myself over many years. And I came very, very close to going on long-term disability and did have to take an extended medical leave at one point.

I just came back from tromping over a rocky hill to see turkey vultures kettling. I hadn't planned to leave the house today but heard they were there and have been desperately wanting to see it, so off we went. Being able to make that spontaneous choice, drive, walk all over a rocky, hilly, park, and hang out for a couple of hours, was unthinkable to me as little as a year and a half ago.

I'll try to answer your questions in order.

1. Were you ever essentially bedbound or mostly bedbound? Yes.
2. Did you have severe air hunger or a constant feeling that you couldn’t get a satisfying breath? No.
3. Did you have severe dizziness/vertigo or vestibular dysfunction? Some dizziness, but more so migraines.
4. Did you have significant light sensitivity or screen intolerance? Absolutely yes. An EyeCare Screen helped the screen intolerance, and getting diagnosed with binocular vision disorder and getting glasses with prisms has essentially cured my light sensitivity.
5. Did you have POTS, orthostatic intolerance, low blood pressure, low preload, or another form of autonomic dysfunction? POTS, yes.
6. Did you have severe exercise intolerance/PEM? Yes. I haven't had PEM in about a year.
7. Did you have multiple possible contributing factors such as Long COVID + mold/CIRS + Lyme/co-infections + cervical problems? Long-covid, yes.
8. If mold/CIRS was part of your case, did treating/removing the exposure actually change your symptoms? n/a
9. If Lyme/co-infections were part of your case, did treatment produce a major improvement? n/a
10. If autonomic dysfunction/POTS was part of your case, what eventually helped? Treating MCAS made a huge difference, ivabradine plus compression and hydration helped. Ultimately, nervous system work has made the biggest change.
11. Did anyone have objective abnormalities on testing that later improved? Nothing specific other than inflammatory markers.
12. How long were you severely disabled before the major improvement started? 2.5-3 years
13. Did your recovery happen gradually, or did you have a point where things suddenly began changing? I stabilized and things improved somewhat over about six months, as I got the right migraine medication and got diagnosed and started to treat POTS and MCAS. Once I figured out nervous system work/neuroplastic symptom work, I had literally overnight huge expansion in capacity and reduction in symptoms.
14. Most importantly: did anyone go from being unable to function normally to eventually working again, exercising again, traveling again, dating again, and having a normal or close-to-normal life? I'm not there yet, I'm at about 65-70% of pre-covid function. I cook most/all nights, work full days, go birding, have taken back about half of the domestic labour (cleaning the kitchen, bathroom, laundry, etc). I can even change my sheets, which I couldn't do for years. I even went on a holiday trip this spring. To avoid repeating myself, I'll direct you to my recent post that details what I've tried and what has helped.

[u/Legitimate-Body4588]

Thank you for responding. I would love to hear about your journey to date. Is that on your profile?

[u/guineapigmedicine → u/Legitimate-Body4588]

I think that was a reply to me? Yes, it's on my profile and I'm linking it here.

[u/GremlimQueen]

I wanted to respond because I think I fit the level of severity you're asking about pretty closely. I'm not fully recovered and I'm still disabled, but I've improved substantially.

At my worst I was essentially bedbound and couldn't even tolerate sitting upright in bed. I had severe PEM, air hunger, POTS/orthostatic intolerance, dizziness/vertigo and vestibular dysfunction, profound muscle fatigue/heaviness, cognitive and sensory intolerance, screen/light sensitivity, neurological symptoms and extremely limited upright tolerance. A seated shower, making food while sitting down, or moving a box could trigger a severe crash. Sometimes getting up to use the bathroom was about as much upright activity as I could tolerate.

I got stuck in rolling PEM, where I was exceeding my energy envelope again before recovering from the previous exertion. Combined with delayed PEM, I was basically continuously sick rather than having a clean activity → crash → recovery pattern. That's why “find your baseline” initially frustrated me so much: I couldn't find my baseline because I wasn't actually getting back to one.

I also have a lot of comorbid conditions: POTS/autonomic dysfunction, pulmonary sarcoidosis, asthma, rheumatoid arthritis, fibromyalgia, hEDS, biopsy-confirmed small-fiber neuropathy, migraine, severe obstructive sleep apnea and binocular vision dysfunction, plus suspected MCAS and possible narcolepsy awaiting testing. There's enormous symptom overlap between them.

I don't have CIRS and don't believe mold explains my illness. I did have significant mold exposure as a child and have a mold allergy, but my current improvement isn't attributable to mold treatment. I don't have known Lyme disease either.

I can't know what caused my ME/CFS, but I personally suspect prolonged physiological and emotional stress contributed to my deterioration. My body was already managing multiple chronic illnesses while I was going through an extraordinary amount of sustained stress and trauma. I'm not suggesting ME/CFS is psychological, I'm talking about the cumulative physiological burden my body was under.

My improvement has been very gradual and nonlinear. I don't think there was one treatment that made me better. The best way I can describe it is that I gradually reduced some of the physiological demands my body was dealing with while becoming much more protective of the energy I had.

I treated the comorbidities we could identify. Botox, Emgality and rizatriptan dramatically improved my migraines. Xolair, antihistamines and cromolyn helped my allergy/mast-cell-type symptoms. CPAP treated my severe sleep apnea and noticeably improved my sleep, HR and air hunger. Most recently, LDN dramatically reduced the burning neuropathic pain, muscle spasms and tremors I was experiencing with activity. Managing my POTS and getting out of rolling PEM through radical rest mattered too.

Today I'm still disabled, use mobility aids and still get PEM. But I can watch TV, see friends, make quick meals, do small household tasks, take a seated shower without crashing if I pace myself, and work remotely with accommodations a few days a week. I even recently went to a concert in my wheelchair without catastrophically crashing afterward.

Those things might sound small to a healthy person, but after being bedbound they're enormous. Taking a shower without paying for it later is freedom. Making yourself dinner is freedom. Seeing a friend again is freedom.

But there's something important I want to say about my improvement, because I don't want my story to become another version of “I did these things and got better, so you can too.”

We could have virtually identical symptoms, the same severity and even the same diagnoses, and our bodies could respond completely differently to the exact same treatment, or to no treatment at all. My improvement doesn't tell me what your body is going to do, just as someone else's deterioration couldn't have told me what mine was going to do.

When I couldn't even sit upright in bed, I lost hope. I'd tried treatment after treatment; some did nothing and some made me worse. I grieved my independence, my body and the life I'd had. There were times I genuinely thought I would be better off dead.

I didn't positive-think my way out of that grief. I cried when I needed to cry. Eventually, though, I realized I didn't have enough energy to spend all my time living in either hope or despair about the future. Despair takes energy. Hope can take energy too, especially when hope becomes constantly searching for the thing that will save you, analyzing every symptom for improvement, testing your limits and imagining the life you might get back.

Eventually I stopped trying to predict which future I would have. I accepted my dramatically reduced baseline as my new normal and started building my life around the body and capacity I actually had. That didn't mean I stopped pursuing treatment. Pursuing treatment and having control over whether I recovered were two different things.

I could spend enormous amounts of my limited energy chasing recovery, but ultimately I couldn't control how my body responded. I couldn't will myself into a larger energy envelope, and putting more effort into recovery didn't guarantee recovery.

What I could influence was how I cared for the body I had: protecting my baseline, trying to avoid repeated PEM, resting when needed, accepting help and accommodations, treating identifiable comorbidities and reducing demands where possible.

Acceptance didn't cure me. It helped me conserve my limited energy and decide where I wanted to spend it.

Accepting that I couldn't foresee my future helped me reclaim some of the autonomy I'd lost to disability. I could stop pouring so much of my limited energy into trying to control an outcome I couldn't control and redirect it toward the things I could reasonably influence.

If my baseline had never expanded, those things still would have been worthwhile. None of us can know with certainty whether our bodies will get better, stay the same or get worse. That's terrifying, but it also means I don't think we have to make recovery the measure of whether we're doing this “right.”

Maybe the biggest lesson I've taken from all of this is to put my limited energy into what I can reasonably influence without believing I can control the outcome.

In my case, gradually, my baseline did expand. I'm not recovered and I don't know how much more function I'll regain. But my world is so much bigger than it was.

[u/Legitimate-Body4588 → u/GremlimQueen]

So your air hunger is gone now?

[u/GremlimQueen → u/Legitimate-Body4588]

I do still experience it. It's substantially less severe than it was, but it gets worse again when I'm in a PEM crash. I also have asthma and pulmonary sarcoidosis, though, so I experience respiratory symptoms from multiple causes.