r/mecfs

TL:DR
I’m housebound struggling with walking but my doctor said mobility aids will deconditioning me and I have to force myself walking painfully.

Situation brief:
-I’m mostly housebound and will become bedbound after going outside (any amount)
-Normal day I can walk from bed to bathroom and if I have to go outside I can also walk (with pain of course, but I can tolerate)
-PEM/crash day I might have to crawl to get around or need some help
-My worst day I will vomit just because sitting up too long, walking just 1 sec

Yesterday I brought up about mobility aids to my doctor, but he said absolutely not. He claimed that mobility aids will deconditioning me and I’m not disable enough.

He recommended that I should force myself to walk, like it will hurt and tiring but you have to do.

I don’t know what to do. I’ve been thinking about getting some mobility aids for months. And from my research, deconditioning is not real for ME/CFS. So I don’t know what to do :( I just want to have my life back. I miss outside. I was so excited to wheel around.

plus I’m afraid that it’s wrong to get mobility aids without doctor’s order.

My (31F) boyfriend (40M) has been suffering from LC for 4 years now. It has destroyed his quality of life, he cannot work, and he is now in financial ruin. Losing his place to live because he can’t afford rent, he doesn’t keep up with friends since he got sick, and essentially only finds happiness when being with his 5 year old daughter.

He told me last night that he doesn’t want to live anymore and I am in shambles. I want him to keep trying, I don’t want him to end his life. But he keeps telling me that it isn’t fair to ask him to keep suffering anymore when there’s next to no chance he will ever get better.

From folks in this community who have LC-ME/CFS… can you tell me what you would do? Or what you’d want your partner to do? Am i cruel for asking him to keep going, like he says?

I love him so much, I don’t want to lose him. Moving in with me isn’t an option because I have two roommates (and I’m not in a financial position to move out with him and cover all bills), and he has his daughter over when is he able to look after her. I am at a loss 😭 My heart is breaking. 💔

I've been eating less and less because digestion itself is extremely hard for my body.

I'm already on a somewhat liquid diet, low histamine and all that

Every time I eat something I get incredibly painful one sided tinitus "shocks" that go through my neck into my chest, along the vagus nerve I think (usually my warning sign for massively overdoing it).

How do I stop crashing from digestion? Is it time for a feeding tube? :(

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.

Hello everyone, I’m a 19 year old boy and have had ME for about 2 years now, I’m really struggling. It’s soul crushing to see everyone I know going on holidays, relationships etc, especially because I used to be a confident and high energy person that always wanted to be outside and still do but can’t unfortunately, I’m sure a lot of people deal with the jealousy aspect of this comparing themselves to other people I know it’s not a healthy thing to do to compare myself but they’re just uncontrollable thoughts. I really don’t know how to deal with this I keep hoping it’s gonna change for me but I’m aware it’s likely not gonna go anywhere. I really try to convince myself that living is worth it but I don’t know how to deal with this, What are things I can do to stop this constant grieving? It’s like I just lay down all day sat with my thoughts and just constantly sinking into a pit of depression I really struggle with the thought of going through all my 20s watching everyone do what I wanted to do. Any tips or coping mechanisms will be greatly appreciated. Thanks everyome

Hello all,

I am at the unfortunate point of being housebound because I can no longer safely walk alone outside with my mobility aids. I live alone and am trying very hard to maintain independence. I have been out on my own twice in about 11 weeks and have deteriorated quite significantly in that time.

I am looking at getting a powered chair to allow me to get to the doctors, to the shop or go out a couple of times a week for a short 'walk'. A mobility scooter would be cheaper and much more adept at handling the pavements in my area (which are a real state, especially improperly completed drop curbs). However they are larger and I am worried about the fatigue incurred by having to use my core and have my arms up to use the handle bar. An electric wheelchair would be worse at handling the pavements but I think it would possibly be less fatiguing and more comfortable.

I am hoping to get to test them soon, but I wondered if anyone else has any experience with them or could offer any insight? I'd love to know what worked for you.

Hallo zusammen, ich bin seit 2 Jahren an ME/CFS erkrankt und war zu dem Zeitpunkt erst frisch verheiratet. Ich bin leider moderat-schwer betroffen und benötige eigentlich bei allem Hilfe. Ich kann zwar noch eigenständig ins Badezimmer gehen aber das war’s dann auch.
Thema Sexualität: seit ich erkrankt bin habe ich überhaupt keine Kraft und auch keine Lust auf Intimität mit meinem Ehemann obwohl in unserer Beziehung alles gut ist. Ich merke, dass er sich das natürlich wünscht aber er macht mir keinen Druck deshalb. Das letzte Mal ist sicher schon ein Jahr her und danach hatte ich solche Angst um mein Herz weil der Puls so hoch war. Seitdem war das Thema erstmal vom Tisch.
In letzter Zeit spüre ich so langsam wieder meine Libido aber traue mich nicht dem nachzugehen.
Daher meine Frage: Wie geht ihr mit dem Thema Intimität/Sexualität bei ME/CFS um? Habe ihr dahingehend Erfahrungen/Tipps?
Danke im Voraus 🙏🏼

hope this is okay to post, I'm just a bit nervous about a GP phone appointment I have on tuesday and was hoping for some advice/pointers?

For context I had an appointment 2/3 weeks ago because I was told to get a referral for rheumatology. I've been trying to get one since I was diagnosed 2 years ago but had to start again due to moving to a new area recently. When I got to the appointment the GP seemingly had no idea what ME/CFS even was, used chatgpt and google to try and quickly figure something out. He then said a rheumatology referral would do nothing for me and there was actually nothing at all he could refer me to. Ending the appointment by prescribing me amitriptyline despite me saying I really don't want my first approach to be medication, especially not antidepressants.

So that was an awful appointment and I haven't started taking those meds. I actually called the GP practice back and asked to see someone else because I feel really unconfident in the prescription and information given.

What can I do in this new appointment to point this new GP in the right direction? My sister mentioned a ME/CFS & Fibromyalgia service in London but other than that I don't really know what I can bring up (I get very overwhelmed trying to find all the information on google). Are there any places I can get referred to (london based) or any other helpful things my GP can look to?

Thank You

Whenever I have a cold (like I do now), I feel disproportionally ill, like I've caught a terrible flu. Kind of like my immune system is massively overreacting? Even a week in, my actual cold symptoms really are very mild, but I feel so very miserable. It feels exactly like PEM, but with much more intense malaise and shiveriness.

Anyone recognize this? (I read that some people with ME/CFS actually feel better during a cold?)

is it possible to just have a really bad symptom day but not be crashing? Yesterday I felt so awful it was hard to think or talk or type, but I woke up today feeling pretty good.

For the past two ish years, maybe even longer, I’ve been getting a sort of euphoria/adrenaline rush about 30min to an hour after waking up every morning. I thought it was my ADHD meds, but it happens even when I’m not on them. I’ll always have this rush with a spiked heart rate and then after about 30min to an hour I’ll get suuuuper tired (probably coming down). Is this an ME thing? I’m still trying to distinguish my ME from the rest of my life and other disorders.

Posted by Marnie Marin on facebook:

"How do I actually recover?

On Monday 12th October I'm running a free live session with Stuart Porter, one of the most generous and knowledgeable recovery coaches I know.

Between us we have helped hundreds of people with ME/CFS, Long COVID, fibromyalgia, POTS and related conditions find their way through.

30 minutes of teaching. Then we open it up for your questions.

Monday 12th October.

7pm Melbourne / 9am UK / 10am Central Europe.

Completely free.

To join go to: recoverycoachinglab.com and scroll down to register"