Hi everyone. I’m a 29-year-old woman and I’ve been dealing with persistent fatigue since about April this year. I’ve always had baseline anxiety, but it spiked in April, and that’s when everything started. Since then I’ve had constant tiredness and sleepiness (I can’t nap anymore, yet I’m drowsy all day), trouble starting activities, low motivation, and upper back/trapezius pain without any widespread pain. I’ve also had a few episodes of sudden leg weakness, like my legs won’t respond, and lately I bruise easily despite normal clotting times. After a strength training session I woke up with weak muscles and, for the first time, petechiae on my biceps.
Some relevant history: in 2024 I saw a rheumatologist for fatigue. My ANA was positive and anti-Ro probably positive, but I had no symptoms of autoimmune disease, and he mentioned possible fibromyalgia (my mom has it). This year my ANA came back negative, as did my CRP, and my TSH is normal. My ferritin was fine before a tonsillectomy, but I had a bleed afterward and it dropped to 17. It has risen to 29 after about a month of iron. My vitamin D is 23 even after two doses of Hidroferol, my platelets were around 328,000, and my CBC showed 4.2% immature granulocytes, which worries me.
I’ve been on escitalopram for 5 months (recently lowered from 10 mg to 5 mg at night) and I still feel sleepy. I also started a birth control pill for PMS, but it hasn’t improved my energy. I’m taking iron, vitamin D, magnesium, folic acid, vitamin C, collagen and a probiotic.
My questions: could this be ME/CFS, fibromyalgia, or something else I should rule out? Is it worth repeating autoimmune markers given the positive result in 2024 and the negative one now? Could the SSRI be contributing to the fatigue and sleepiness? And what tests or specialists helped you get a diagnosis?
I’d really like to recover my energy, or at least get a name for what’s going on so I can learn to live with it. Any experiences or advice are very welcome. Thank you!

Here some fun pics of me before vs after mono and me/cfs destroyed my life:) second picture is after not sleeping in days due to me/cfs severe insomnia and akathesia

Multiple things in text below; scared, don’t have ME/CFS doctor, ER is out of the question for any reason even if I am dying, they send me to psych ward or PHP, they believe it is psychosomatic and I am an addict and very mentally ill and they know it and that’s the only thing that matters to them.

I went to a facility, a rehab-like one, because I was chugging alcohol for four days in order to force rest and digest after being in a state of fight or flight for months. I went to this rehab because I had started to experience hallucinations after not sleeping, and I CANNOT GO TO THE ER as I said before, and I figured they could help me sleep: and took this for four days: 6mg of Ativan for two days, 3mg of Ativan for two days, and 1mg of klonopin for 1 day

I discharged about 20 hours ago because they were starting to forcing activity on me (first 4 days you can rest and chill, after that required full 7-7 schedule of group therapy) and now I’m home and my muscles in my legs are tense, I have noise sensitivity like I have NEVER had before, and my visual snow syndrome is worse

At this facility I also had to walk a lot, to the nurses, the cafeteria, expericned mental breakdowns, akathesia, because Ativan actually has paradoxical affect on me I think.

It’s been 24 hours since my last benzo (1 mg Ativan), and 36 hours since klonopin

I’m really scared about benzo withdrawal, I’ve had it before. But I just slept for 13 hours, as you know I have severe insomnias. If could be because of the klonopin in my system still.

Other symptoms: pain in whole body, light sensitive, extremely irritable (I just screamed out of frustrations when I dropped my noise canceling headphones off my bed) (I was irritable on the benzos anyway) agitated, vivid dreams, and feels as if I cannot get to a state of rest

I genuinely cannot go to the ER because when I have been before(for severe insomnia) they have put me in a psych ward and almost court ordered PHP for me (I can’t get out of bed without worsening PEM/adrenine rush) I am a known addict/mentally ill person at every ER near me, every chance they get is court order her to go somewhere

One time I went expericing akathesia and they said I was throwing a fit kicking my legs and force drugged me with anti psychotic and handcuffed me to a psych ward full of people screaming.

Am I freaking out over nothing? I believe I am severe-very severe but I am unsure as I have been running on adrenaline for a very long time and have used medical GHB to force sleep for a while (this may get taken away from me forever due to the pharmacy finding out about my being an addict.) I likely find out in a few days if I will ever be able to take GHB again, however, GHB actually sometimes has paradoxical affect on me now, (it is a main aggregator of my akathesia at times) so maybe for the best

Genuinely no sleep meds work for me besides GHB (when it is not paradoxial). and klonopin but I cannot go through anymore withdrawals. (GHB doesn’t cause withdrawals when taken as prescribed, but it actually recently worsens my akathesia and therefore insomnia) I cannot take nightly klonopin id rather die, benzo WD worsens my akathesia

Really scared of the unknowns and taking everything not to chug the bottle of wine in my mini fridge next to me right now, last time it made it so much worse

Severe OCD. BPD as well

I have a sleep doctor and he prescribes the GHB but it is up to the GHB pharmacy now in order to dispense it, they may not

Btw, this is me before vs after mono destroyed my life. I have not played my sitar in almost a year

I am crying while writing this, however I find crying helpful in my resting because it triggers rest and digest when I am done, which I can hardly ever get into a state of
Ultimately what I am very scared of is that I will go through benzo WD after these four days of use

Like I said I just slept 12-14 hours with one wake up in between. I am taking CBD 100mg every 8 hours, clondine 0.2 every 8 hours, and 2g aminita muscaria tincture every 8 hours (yes maybe it’s bad but it triggers rest and digest for me at times and keeps my limbs still when they are trying to move from akathesia)

My PCP refers me to psychiatrist and sleep doctor when I ask for help, ER is out of the question. (I don’t need it now anyway) Sleep doctor is trying to get me my GHB however pharmacy may deny, I just sent him a messsage about the insomnia and that I NEED A PRESCIPTION WHILE WAITING TO SEE IF I WILL GET MY GHB AND ALSO THAT IF MY GHB CONTINUES TO CAUSE AKATHESIA I NEED A NEW SLEEP MED he encourages ER for severe insomnia or psychiatric visit

narcolpesy is no longer my main issue, before me/cfs I could sleep for hours a day, now I experience severe insomnia

I think maybe the benzos were covering up the PEM and now I’m feeling it bad- tinnitus, full body nerve pain, extreme irritable, head feels like it will explode, severe headache. Extreme noise sensitive and overstimulated) (a dog was barking outside yesterday and I threw my phone at the wall) However these could also be benzo WD symptoms

I actually feel calm and sleepy again now, maybe the CBD is helping

I have OCD as I mentioned and always need reassureance and a plan. So my plan now is to lie here with my noise cancel head phones and earplugs, take my supplements and meds, maybe do meditations, and try not to worry about benzo WD and sleeplessness (i can tolerate every symptom of me/cfs besides the insomnia)

If I experience worsening visual snow syndrome (worsening VSS for me just equals hallucinations), severe muscle tensions, and benzo WD symptoms, I will go BACK to the rehab, and when they try to force activity on me, I will refuse. Like I said ER is out of the question even if I am dying, every chance they see me they jump on trying to send me somewhere or have me do a program

I will keep my phone silent, except for having the GHB pharmacy on emergency override (I need to know if I am going to be able to take this med, and if not, my sleep doctor/neurologist NEEDS TO PRESCIBE A DIFFERENT SLEEPING MED)

I will do my best not to consume the wine 3 feet from me. I actually feel okay right now, like I may sleep some more

Maybe the benzos aided me out of the crash and I don’t need them anymore? I don’t want them, I don’t want to take a benzo, it helps in the moment, but benzo WD is very bad

Pls be kind to me in the comments, I have posted other things, if you notice discrepancies, I am being as honest as possible, but I have slept probably a total of 50 hours in the past month. My brain feels fried.

i’m planning to ask my PCP (who specializes in ME) for a prescription for benzos — hopefully for both ativan/lorazepam and klonopin/clonazepam.

i’ve been taking these from a several-years-old rx for panic attacks, but i’m almost out. they’ve been extremely helpful for preventing/mitigating crashes.

i know that some doctors are wary of prescribing benzos, so i want to prepare myself for that, and maybe prepare to make a case for why i need the rx.

any tips/advice? what has your experience been getting these prescriptions?

ETA: i’m in the US

People who have had this condition since a young age they couldn't experience normal life, couldn't experiment, couldn't build anything. They're in a vegetative state. When you see everyone around you building their lives, building friendships, building projects, building relationships, living not suffering how do you cope with it?

I'm not looking for treatments. Everything failed.

I'm just wondering WTF no research is looking for mechanisms of the light/sound sensitivities. It's the N. 1 thing that sends us to the psych ward.

Yes it's complex. If it wasn't we wouldn't need any research done.

It seems like I'm sabotaging myself everywhere. Can't seem to get anything done. It's like the most annoying comorbidity holy hell, and as dumb as that sounds, really makes my severety seem higher then it would be without it. And I can't really have any conversation without people thinking I'm an asshole afterwards? I'm not an asshole and I'm thankful for anyone who is ready to talk to me and help me. Idk where people always get that. My whole life I've been framed as a bad person with no empathy, and it just keeps getting worse and worse and worse.

Is there anyone who is neurodivergent and ready to share their tips? Kind of losing my mind over here.

oh yeah and edit cause I need this question answered: is there any autistic person who doesn't immediately fall into autistic burnout upon falling sick? cause my skills flew out of the window from the first day on.

Hey fellow me/cfs’ers
There is a huge contrast with various differing opinions on this topic. However, one question that pops up my mind is do you think there will be a cure in our lifetimes? Like next 20-40 years? Do you think we are moving in the right direction with regards to that?

NHIS stands for National Health Interview Survey. In the US it is an important tool used by the CDC to gather information about the health of Americans. They are now rewriting the questions for 2028 to EXCLUDE any questions about ME/CFS, Long Covid, & fatigue. I cannot believe they are doing this.

This is another way to make us disappear & marginalize our community. If you follow the link below to Solve M.E. or go directly to their website at solvecfs.org you can see their page about this issue. They are asking for our help to keep these questions on the survey. They have included a template that we can copy & paste into an email to request these questions do not get eliminated from this important national survey.

I’m not doing well lately, & I know so many of us here are really struggling, but hopefully this is something that many of us can do. The template allows for patients & caregivers & family members to send that email. I’m going to send it in & ask that my family members send it from their email addresses as well. Hopefully many will be able to accomplish a relatively simple copy, paste, send.

I know so many of us wish we could do more for our cause but this illness is so disabling that we struggle to survive the days. I’m grateful to find one thing that I actually have the energy to do. I hope anyone in this community who is able will please copy the template & email it. Please share if you can. Please share in any other community you think should be aware of this issue.

Solve M.E.- CDC MECFS Long COVID Survey

Sometimes it feels as if there's an underlying assumption in ME forums, clinics and advocacy groups that everyone can access all the help they need to pace and minimize crashes. This is not true at all.

I'm on the severe end of moderate, live alone, and 16 years of ME/CFS. No one to move in with, no one to ask for help, can't afford any more than the small amount of help I pay for now (once a month). No other programs there to help me. On top of everything, I am living off savings (thank goodness I have some but it won't last forever). No one to guarantee a roof over my head, no secure housing to inherit. And so many people have it even worse.

Every day's a struggle to get myself fed. And I can't eat just anything due to food intolerances, which make the ME worse.

Some of us would love to pace enough to avoid crashes, but it's not possible when there's no help.

I wish this reality were acknowledged more.

Would be very interested to see this study done with me/cfs patients

I can’t help it but I cant do this illness anymore.
Moderate cfs was somewhat liveable, but severe and very severe are another level. it’s no life at all. It’s just breathing to stay alive and nothing more
I’m so sad 😭

maxing out on adrenaline vibes

I often hear why can’t I just be more positive for once. Yes they do everything for me but I can tell I’m an utter burden. When I first got sick we argued 24/7 about my needs. Now I’m v severe. Text argument btw. They raged at me and said they walk around miserable because of me etc etc. I’ve gone nuts about it. Woops. I’ll likely delete this. They’re the only person I have and now I feel like the relationship will never mend, I don’t want it to tbh. I am rambling because my head is about to explode. She says it’s me and I make her feel guilty and I’m passive aggressive because I say things like “I did this to save you doing it and now I’m crashed” but I don’t do it in that way, it’s to prove I’m trying. Pointless.

I’ve been looking for a doctor to diagnose me with ME/CFS for a while now, after discovering this condition and educating myself on it more. I’ve used many of the resources available in this sub to help determine if this is a condition that I have, and I strongly believe I do. I’m not making this post to ask for advice on if I have it or not.

After researching doctors in Michigan that specialize in ME/CFS and related constitutions, one of the one’s I’ve found is Dr. Edward J Conley’s in Flint. My mom was able to speak on the phone with him and a visit with testing plus the follow-up appointment to go over that testing would be over $2,000. He said he would do a urine test to see how my mitochondria is functioning, adrenal labs, and check my adrenal glands, none of which would be covered by my state insurance. He also said that he believes he could get me feeling better before the end of 2027, which to be honest raised some alarm bells in my mind since my state has only worsened the last 5 years I’ve been sick after catching covid for the first time.

I’m making this post to ask if anyone here has any experience with him, what types of treatments he recommends (like if he’s just gonna tell me to do GET or take some magical supplement 🙄), and if he’s someone worth going to before spending a lot of money just to see him. If you have any other recommendations for other doctors in Michigan besides him, please let me know as well. I’m sorry if this is long, I just am at the end of my rope with trying to get a diagnosis. Thank you for reading, I really appreciate it!

TLDR; Does anyone here have experience with Dr Edward J Conley in flint michigan, and is he worth spending a lot of money that I don’t really have for a diagnosis. If not do you have any recommendations for doctors in Michigan. Thank you 🫶

Hello all, I am sharing my latest astrophotography project. I was able to set up my telescope and camera rig near my bedroom so that I could control it from bed via an app on my phone. With my wife helping me get everything setup I was able to collect photos of this target for multiple nights and then edit everything over a few days in short periods. My baseline has declined over the last few months but I will not let that stop me completely from imaging the cosmos and I'll share these projects as long as I am able.

The heart and soul nebulas are a stellar nursery located around 6800 light years away in the constellation of Cassiopeia. This image was created using specialized filters to separate the light coming from areas of dense sulfur, hydrogen, and oxygen so that I could recreate the color palette made famous by the Hubble telescope.

Please let me know what works best for you & expand in comments (e.g. which meds).

Personally, - other than rest/pacing - medication works best for me (mainly Low Dose Naltrexone 4.5-9mg, also medicating POTS & MCAS).

POTS: bisoprolol 5mg, Ivabradine 5mg AM 2.5mg PM
+ vast amount of water and Electrolytes daily (get kidneys checked every 3-12 months if you take meds processed by kidneys and have high salt intake)

MCAS: not sure if I have it or if it’s just allergies. I do triple therapy: H1 & H2 blockers (fexofenadine 180mg x2, famotidine 40mg), and Mast Cell Stabiliser (3mg Ketotifen).

Melatonin 1mg for sleep.

I’ve tried quite a few meds, but I’m yet to try meds like Low Dose Abilify, Mestinon, Low Dose Rapamycin.

Supplements:
I found Ubiquinol (most bioavailable CoQ10) helps when taken with dietary fat.

I’ve never really noticed diet helping, but I think my only chance of getting a bit better involves trying to improve EVERYTHING. That includes my diet, and also starting to meditate or do deep rest again. I’ve tried it all before, but I feel like I really should try to keep on top of it all. I really hate meditation because I have ADHD.

I'm moderate and have recently been having conversations with my wife about us sleeping in separate rooms to allow me to get a better rest but she is absolutely heartbroken about this.

She works hard to support and care for me and take care of much of the house stuff so I can pace, and she's had to adjust so much already to our new lifestyle because I simply can't do the things we had hoped to do etc. but this for her feels like a rejection and a change in our relationship that she can't be ok with. (We've been together 27 years and love each other very much.)

What is your experience of sleeping arrangements? What works best for you? Have you found sleeping separately helpful?

Without necessarily getting PEM. However, I often get very tired and sleepy afterwards, while I often hear that people feel energised after working out.

My tolerance for cardio is much lower. Maybe because cardio more easily increases my heart rate beyond my pace line.

I get 1-2 days of PEM from activities including: a couple of hours walking, a day in the office (well, I'm wiped out by the time I arrive), a few hours socialising, intense stress/emotional stress.

My usual GP is off sick so I got a different one today. It was about things that they actqlly treat but he asked what the housebound thing was about on the phone before he came to visit and I said I had severe ME and he said "Oh, I am really sorry that is an awful condition, your GP seems to have left that off your record so I will record now". He didn't need to visit in the end.
I knew my GP had refused to add it to their records, they are a prejudiced shit, but I just walked into a good one randomly. Let's hope my GP stays off sick and I might finally get some help. I actually got some meds today for symptoms I have with a followup in a month!

I am unable to do what I used to be able to do in the kitchen.

Would a dietician or a nutritionist be able to help me learn how to cook with chronic fatigue syndrome?

Hi all

36 F UK mod-severe

I've hurt my neck just for being in bed... Potentially because of neck craning when sitting up and looking at phone/device/book

Hit me with your reccies for sitting up in bed, how to stay comfortable but also prioritising spinal health. This has been horrid because the pain has made me nauseous

Tia

Important to note: non-dutch speakers living in NL. So the group/discord should be in English but for people who reside in NL.

Edit: I mean do you know if such groups exist??? I have found a dutch one but unfortunately they only speak dutch there so I cannot use it.

Hi everyone! I posted some questions about Apple Watches yesterday- thank you to anyone who gave advice! When doing more research, I kept seeing the Garmin watch popping up as a good one for ME/CFS. Would anyone recommend one over the other? And if you do find Garmin more helpful, which model do you use? I saw online that the Venu 4 is pretty good for ME/CFS, but there’s so many models available. Thank you!

I’ve become increasingly light sensitive but throughout my entire illness I’ve experienced eye pressure. I also notice that the same blood vessel keeps bursting every few weeks, and this has been going on for almost 3 years now (basically the duration of my illness). The last time I went to an eye doctor was right before I got sick, but now I’m severe so going there would be a challenge. My eyes get fatigued more easily now and I thought that it was maybe just because every muscle in my body is weak and well, eyes are controlled by muscles. But now I’m not sure whether it’s an actual problem with my eyes and not muscular or neurological like I’ve been assuming. Maybe it’s just eye strain from looking at screens all day, or I need my glasses prescription updated, but I hear a lot about eye problems in pwME so now I’m wondering how normal these symptoms are and if anyone has gotten answers for it? I’m particularly concerned about the blood vessel problem. My blood pressure is lower due to Propranolol so that shouldn’t be causing it.