Just got this RX from my provider. Supposed to help with PEM and my ME/CFS symptoms from Long COVID. Starting at 30mg twice a day.
Anyone else on this or have tried it? Anything I should look out for or be aware of?
Is ME/CFS actually treatable or even curable?
I’ve recently been reading more and more posts where doctors and researchers seem to suggest that ME/CFS may be treatable, and that some people may even be able to recover.
Honestly, I’m feeling a bit overwhelmed and confused by all the different information.
For those of you living with ME/CFS: What are you currently doing to improve your condition, and what treatments or approaches have genuinely helped you?
I’d also love to hear from people who have improved significantly or consider themselves recovered. What do you think made the biggest difference for you?
I’m especially interested in what is actually supported by current research, rather than miracle cures or unproven treatments.
What can we realistically do to give ourselves the best chance of improving or recovering from ME/CFS?
My muscles are getting weaker, and idk if it's from the CFS or inactivity. idk if I count as moderate or severe. My diagnosis was in March and it's been a rollercoaster since then. I'm scared to push myself because I do get pem from doing things like leaving the house, but I'm worried that I'm exercising so little it's making it worse. Any advice/your experiences?
I’ve been wanting to share this somewhere because I honestly don’t know where else to put it, and I’m hoping maybe some of you will understand.
For about four years, I was frantically trying to figure out what was happening to me. I was constantly researching, going to doctors, having tests done, and searching for answers. I’ve had COVID five times and two vaccines, and somewhere along the way my health and quality of life completely changed.
I didn’t understand what was happening for a long time. I just knew I could do less and less.
Eventually, I stopped doing things. I stopped going places. I isolated myself and shut almost everyone out because I simply didn’t have anything left to give. From the outside, I’m sure it looked like I was becoming angry, distant, or difficult.
But my body was disappearing before my eyes.
My husband didn’t understand what was happening either. He thought I should still be able to do the things I had always done...take care of the home, him, our pets, and everything else. I became increasingly angry and resentful because I felt like no one understood how hard it was just to get through an ordinary day.
I lost so much weight that I was accused of being on drugs. I wasn’t. My health was plummeting.
There were already problems in our marriage, and those problems continued to grow. Seven months ago, I asked for a divorce and left. We had traveled so much for his job that I don’t really know anyone where I live now. I work part-time from home, but even that is barely manageable some weeks. Every week feels like a fight just to pay the bills and keep going.
Now something has happened that I didn’t expect.
I’m slowly healing from Chronic Fatigue Syndrome. I’ve fought with everything in me to get even a little bit of my life back. I pushed almost everything and everyone aside because I had to focus on surviving and trying to heal.
But as I’ve started to feel a little better, I’ve also started realizing how unhappy I am with the life I’m living now.
And that realization hurts.
I tried to postpone my divorce because I started questioning everything. Unfortunately, I wasn’t able to postpone the hearing, and my divorce was finalized this past Monday.
That has been incredibly difficult to process.
I reached back out to my ex-husband and apologized and tried to communicate. He is willing to communicate, but so much of what I hear back is about how mean I was and how badly I hurt him by leaving the way I did.
And I understand that I hurt him. I can take responsibility for the things I did wrong.
But what I still wish he understood is that I wasn’t leaving because I didn’t care.
I was suffocating.
I was exhausted beyond anything I knew was possible. My body was failing me while I was still trying to take care of everyone and everything around me. I desperately wanted time to rest, to breathe, and to figure out what was happening to me.
At the time, I felt like our relationship had become toxic and that I had no choice but to get away. Now I sit here and cry because I miss the life I had. I miss my family. I miss having people around me. I miss the person I was before all of this.
I’m angry that this illness took so much from me. I’m angry that I spent years trying to figure out why I was becoming someone I didn’t recognize. I’m angry that I pushed people away because I had no capacity left. And I’m angry that I made decisions while I was so sick and didn’t understand what was happening to my body.
I don’t know what happens next. I don’t know if some things can be repaired or if some things are simply lost.
I just know that I fought so damn hard to heal, and now that I’m beginning to heal, I’m finally able to see how much I lost along the way.
I'm frayed this might be me
​
On a personal note, I realized I couldn't trust anyone. In the end, I just tell myself I have to protect myself as much as possible and isolate as much as possible... If I could leave, I would, but I can't expect anything from the ones who caused my problems in the first place. I wish my room was my safe place, but right now it's just a mess, when it should really be my bubble, my cozy space.
I’m looking for what resources that people utilize in Calgary, Alberta. I am still absorbing the reality of this diagnosis and it feels very lonely.
Hi all!
I hope I can get some answers or, well, thoughts or experiences because I’m getting so hopeless. However, I don’t need the “you’ll never get better,” “it’ll only get worse,” or anything in that direction. I’m just trying to put the pieces together. Whenever I try to search online, I either barely find answers or get completely overwhelmed.
I had my first two COVID infections around 5–6 years ago. I’m not completely sure when the fatigue first started, but I think it was around then, although I really started feeling it more clearly around 3-3.5 years ago. Then, about 3-3.5 years ago, I had my third COVID infection, and after that I never really felt like I fully recovered or went back to how I was before. Since that infection, I’ve gradually gotten worse over the past three years. It hasn’t been a sudden decline, it’s been slow, and I’ve become more and more limited. I was also apparently positive for EBV at some point, although I’m not sure when that infection happened or whether it was around the same time as everything else.
This was also during a very tough and traumatic period in my life. At first I thought it was burnout because of everything that had happened, and both my psychologist and doctor thought that was what was going on too. For 1–2 years I was basically told it was burnout.
I started doubting myself because it felt like nobody believed me, but deep down I knew something was wrong. I’ve had burnout before, and I was studying psychology at the time, so I kept thinking, “Something about this doesn’t feel like burnout.” I went to the internist (after begging my doctor) and within 5 minutes he was like, “This is chronic fatigue.” We’re now at the point where he thinks it could be my parathyroid or Long COVID.
I had Long COVID in the back of my mind for a while, and eventually I came across ME/CFS and specifically PEM. The more I read about PEM, the more familiar it sounded. I’m obviously not trying to diagnose myself, but the pattern of my symptoms has made me seriously wonder about ME/CFS or Long COVID.
One of the biggest things I experience is what I think may be PEM. I get what I call crashes that can be triggered by both physical activity and emotional/mental stress. Sometimes I can do something that doesn’t seem particularly difficult at the time, but then I feel significantly worse later or especially over the following days. Sometimes it doesn’t trigger anything at all.
The crashes are especially confusing to me because they don’t necessarily happen immediately. I can sometimes do something and only realize later, or the next day, how much it has affected me. Physical activity, mental activity and emotional stress can all make me worse, but mostly physical activity.
Does this sound familiar to anyone or any thoughts?
Thank you to anyone who took the time to read this.
if long covid causes specific symptoms, wouldn’t it make sense that long swine flu might also do that? i ask because my ME/CFS started after i got H1N1 as a teenager. anyone else also have this experience?
We just found overt hypothyroidism finally after it hanging around TSH 4. With other meds and supplements I have to titrate super carefully. I usually do 1/4-1/2 a dose a couple days a week and then build it up over weeks. Idk whether to do that with Levo because it’s a direct hormone my body makes and I obviously need it. I got prescribed 25mcg anyway so it’s low. But should I still titrate? My doc knows nothing about ME
Hi everyone,
Has anyone experienced extreme, debilitating fatigue with no obvious explanation, and found anything that genuinely helped?
I’m at the point where I’m so exhausted that I can’t function normally. I can’t work, keep up with my university course, attend classes or even meet friends. I’m normally an extremely social and positive person, which makes this feel even more unlike me. I’m sleeping throughout the day and night, sometimes only managing a few hours awake, and I’m cancelling almost everything.
I’ve explored whether this could be my depression or anxiety, but it genuinely doesn’t feel like either I know what depression and anxiety exhaustion is like. I’ve had extensive blood tests and medical investigations, but so far there hasn’t been an explanation. The exhaustion is debilitating enough that I’ve been signed off work.
Someone suggested that it could be a form of spiritual/emotional exhaustion after dealing with trauma and difficult experiences for years. I find that interesting because I’ve always considered myself very resilient and adaptable. Things have happened that my friends say they wouldn’t know how to cope with, but to me dealing with difficult situations has almost become normal.
I’m spiritual and have considered Reiki, but I’m also sceptical about whether it would actually help and whether the cost is justified. Has anyone with severe fatigue tried it and noticed a genuine difference?
I’m also in therapy, but that hasn’t improved the physical exhaustion.I know ME/CFS is another possibility, although obviously I’m not trying to diagnose myself through Reddit. I’m really just looking for experiences from anyone who has dealt with this level of exhaustion. What helped you function again? Was there anything you wish you’d known earlier?
Medical, practical, psychological or spiritual suggestions are all welcome. I realise this is quite vague, but at this point I’d genuinely appreciate hearing what has helped other people.
Could anyone help me with a pacing routine?
This is what I currently do every day, but I still seem to get PEM. I can’t really cut out these activities because I live alone.
I wake up around 11 a.m. and make a simple breakfast, then wash a few dishes. (20 minute)
I lie in bed until around 4 p.m.
At 4 p.m., I heat up some food and eat, feed my dog (20-30minutes)
go back to bed until around 10 p.m.
I prepare a quick dinner, wash a few dishes (20 minutes) and then go back to bed for the night.
I’m already resting most of the day, but I’m still experiencing PEM. Does anyone have any suggestions for how I could structure my pacing differently or reduce the amount of energy I’m using?
My family has been trying to convince me to try to go to a TCM doctor but I'm reticent about it because it might mean traveling (I'm currently worsening to the severe end of moderate, so that would be a really bad idea) and I don't understand many of its principles, so I can't tell if I'm receiving good care or not and I don't like the idea of not understanding how different things might affect my body.
Does any of you have any experience with TCM regarding ME management/treatment?
I already have western doctors following my case and I'm (on a personal level) currently focusing on pacing and stabilising.
Hi everyone,
I wanted to share my LDN experience and titration so far in case it’s helpful to others, and to hear from people who’ve been in a similar place.
Background:
I have ME/CFS. Started LDN in mid-June 2026.
Titration timeline:
I’ve now been on the 3 mg split dose for about 3–3.5 weeks.
Current effects:
I’m starting to feel like I may be near my optimal dose, or possibly a little over it — though that’s just a guess at this point.
Would love to hear from others who’ve used a morning/night split, especially around the 3 mg range, or who dealt with fidgetiness/sleep issues from the nighttime dose. Any tips on timing the evening dose or managing the nausea would also be appreciated.
Thanks for reading.
I am going to try to give as much background as I can as concisely as possible. I am a 40-year-old female married to a 39-year-old male. We have two teenage/young adult children (one living outside of the house, and one still inside). We got married last summer after being officially together for 9 years. Before that, we were best friends with benefits since 2015, and we have been hanging out often as friends since high school in the same social crowds. I thought I knew my man incredibly well.Four months after we got married, I started having seizures. Historically, I have always led the household income, managed the household, and handled all of our financial accounts. We never had a lot of money, but we never truly struggled. Now, after exhausting my FMLA and all the resources I built up, we are 6 months into a period where I haven't even had a portion of my income. My husband did finally switch companies, which came with a much-needed raise and benefits, but in this economy, it is simply not enough.On my 40th birthday, I found out via an MRI that I have a tumor on my left frontal lobe. Because of its location, I fear it is causing the majority of my daily, hourly issues. I also found out that I have high spinal fluid pressure. In 8 months of searching for answers, the only official diagnosis I have is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). I have no real guidance or treatment plan because I am stuck in an insurance coverage dead-zone. It is a massive amount of weight for anyone to carry. To make matters worse, we make $120 too much to qualify for state benefits like SNAP, aside from Medicaid, which carries different income requirements. I am currently awaiting an SSDI appeal with an attorney who told me my case is highly tiered due to the severity of the symptoms I suffer from and the medication necessary to function. But that does not help us right now.I don’t think I realized until now that I never actually had my husband do anything around the house before this. Because I can no longer manage it all, things are falling apart, and it is extremely hard. This is the exact advice I am looking for.I have been trying to be patient and calm, only saying what is absolutely needed. However, I am so physically ill that I cannot repeat myself four times only to still get no follow-through. I cannot hold his hand to complete every single task for a week straight. If I could do that, wouldn't I just do it myself? Man, I miss just doing that and taking care of everything myself. This transition is so incredibly hard for me.We are about to lose everything. When I ask for help, I constantly get "I don't know," "I forgot," or "I'll try harder." He also constantly tells me that my frustrations are just anxiety and depression. I am sorry, but I have anxiety and depression too—I always have. But I can't just look at life and say, "Well, no dinner for the kids, no ride to school, no water, no electricity." That is not reality. I have compassion for what he is going through, but 7 to 8 months into this, it is getting hard to maintain. He has access to another completely free health care resource that I don't have at all, but he simply refuses to go get help.I never compare our burdens, but I feel like I am physically dying. I can't see the direct line out of this. I understand he is stressed, but I feel constantly blamed for everything to the point where I can't even ask for basic needs, all while his own needs are fully met. I cannot drive due to my symptoms, my medications, and doctor's orders. I have no independent income. He says it is "our money," but then he tells me that I "ask wrong" whenever I need something basic, like a case of water or eye drops. The fight it took just to get eye drops was exhausting.I do not feel okay. I have never been through this either, and I have never had to ask people for things. I don't know how to do it. This definitely wasn't on my 40th year bingo card. I could have never, ever imagined that the cruel words, the actions, and the silence would have come from him.tl;dr How do I get through to a partner who is dropping the ball on our survival and blaming me for being sick? Any advice on how to handle the communication or the division of responsibilities when you suddenly become severely disabled would be appreciated.
Does anyone with these conditions get excruciating fatigue where even breathing feels heavy and it’s scary. Sometimes it feels like your not breathing and I am super quiet and almost out of it but your hr is Normal?
Thanks so much
Hallo.
Ich wollte mal nachfragen ob es noch jemanden so geht, weil meine Situation echt komisch ist.
Ich habe komischerweise seit mehreren Monaten schon echt eigentlich viel bis sehr viel Energie, also körperlich fühle ich mich echt so als ob ich schon wieder viel mehr machen könnte und das ändert sich auch nicht, auch wenn ich am Tag davor ein bissl mehr körperliches gemacht habe ( wahrscheinlich durch verschiedene Medikamente, aber keine Ahnung welche genau)
Allerdings habe ich noch viel andere starke Symptome, wie extreme Lichtempfindlichkeit (diese Nachricht könnte ich nicht selber schreiben) und starke Berührungsempfindlichkeit ( so stark, dass ich keine Hose mehr tragen kann, weil die so unangenehm ist).
Also es liegt irgendwie nicht daran, dass ich zu wenig Energie für die Sachen habe. Also Beispiel: ich sitze 14 Stunden am Tag auf einem Stuhl, weil die Berührung im Gesicht wenn man im Bett liegt so unangenehm sind. Und das verbraucht ja eigentlich extrem viel Energie aber es ist trotzdem kein Problem.
Habt ihr da irgendwelche Vermutungen oder glaubt ihr das ich eigentlich auf einem guten Weg bin, weil ja eigentlich das Hauptsymptom (extrem Erschöpfung) eigentlich komplett weg ist.
To be clear, I am not diagnosed yet, but I am fairly certain I have mecfs. I has some minor symptoms in HS that went unnoticed and were easily ignored, and then in 2020 I got mono, and its been a steady decline since. I have been slowly ruling out other possible causes for my symptoms (this week I'll be seeing a GI specialist and having an mslt. I do not have a thyroid issue, and tested negative for immune diseases) and taken measures to address POTs and vitamin deficiencies with no change, in fact I'm getting worse. I can say pretty confidently that I experience PEM and the crashes have been getting worse and lasting longer.
To be abundantly clear, not working is NOT an option. I do not need to hear the "hard truth" of it. I have heard it all and I understand the risk. Many simply do not have the option to stop working and they deserve to hear actual achievable advice for their circumstances. The best case scenario is that in another year I may be able to drop down to 30hrs, and *possibly* in 3-5 years be supported financially by my partner (I am not banking on that because I have no wish to push that responsibility on him unless that is what he wants)
With that out of the way..
Now that there is a lot more talk and visibility online, I've seen a lot of people mention light sensitivity and how it can be extremely triggering, especially in severe cases. Personally I'd say I'm probably mild starting to lean into moderate, and as such I haven't noticed light sensitivity. However my workplace has very bright fluorescents, and I heavily use computers at work and home. I was considering buying some fl-41 glasses as a preventive measure because I'm curious if light could be putting stress on my system without me realizing. I couldn't find any mention of anyone trying this without having already noticeable sensitivity. Has anyone else considered this preventable measure? Has anyone tried it and noticed a difference? The best price for quality I've found is about $80 so although it wont break the bank, I wonder if its worth it just to try.
I've also seen low dose naltrexone mentioned recently as a newer treatment option, and as I'll be seeing a specialist soon to see about an official diagnosis, I was planning on asking about it. Is anyone currently taking it, and have you noticed symptom improvement?
Im also curious about any small or even maybe fringe measures people have tried for symptom management. For instance theres a lot of studies coming out about psilocybin and its positive neurological effects, has anyone tried microdosing? Are there any suppliments or natural remedies that have made your day just a little easier when it comes to fatigue and brain fog, like creatine, saffron, lions mane? *I understand there is not evidence for things like these and I am not suggesting any could be cures or life changing* I am simply asking if in anyones personal experience, they have noticed a positive change with anything outside the box. I think we are all aware that research is lacking, and I personally don't think theres any harm in exploring even the smallest idea if it helps get through the day.
Tldr: outside of "stop working", what small measures have improved daily function? Things I'd like to hear about specifically are fl-41 glasses, low dose naltrexone, psilocybin, and supplements like creatine, saffron, lions mane, ext.
Hi. Im a 46m. Have LC the ME subtype. Have pots and mcas. I've been wondering, have any men here tried testosterone therapy, like using testogel?. I would appreciate if anyone could share their experience both good and bad. Thanks.
Edit: felt like sharing as well. I have been over the years slightly on the lower side but within normal range. I did use testogel before LC on and off, sometimes just a half a pouch all with doctors guidance. It can be dangerous to take to much even though it's just a small dosage and nothing like anabolic steroids because of the blood volume getting to high, risking heart attach and stuff like that. But it always made me feel better.