I'm begging for anyone to know a PCP or any type of doctor who is licensed in Kansas and is aware of ME & autonomic dysfunction. I'm aging out of my amazing pediatrician and I've been to 5+ doctors searching for someone willing to continue my medications & manage hydration infusions through my port. I'm (well not me, my parents) are willing to pay for membership-type places that don't take insurance, I just need someone willing to manage things. I've been on a long road of treatments the past couple years and after a successful blood patch I'm finally optimistic-ish again. I'm very open to telemedicine as long as they are licensed in KS! I know it's just a dead zone out here but I'm really struggling.

Ignore this part it's just me rambling about what kind of doctor I need. My current insurance refuses to approve my infusions anymore even though they were approved last year. I'm getting on KS Medicare but until then I'm stuck without the treatment I need. I had 4 months of weekly infusions last year that improved my symptoms drastically. The doctor randomly stopped them and refuses to start them again as they don't want me to rely on them. I started seeing an out of state provider who placed a port that insurance approved. Come to find out now they won't cover infusions because I have a POTS diagnosis (even though they aren't for POTS) and I can't get infusions at my local LARGE hospital as no doctor wants to be liable for me and the resident cardiologist denied the orders. So now I've applied to state Medicare in the hopes they'll approve the infusions as I've already found an infusion clinic that will accept orders from me. So basically, I need a doctor who will prescribe infusions, continue my Mestinon prescription, continue my corlanor prescription, and just be open about everything in general.

I’ve been in recovery from a total loss of capacity for a year brought on by conplex ptsd and chronic stress. I’ve found the most improvement from implementing the same type of pacing strategies I see discussed by ME/CFS advocates. I’ve noticed that exercise above a light walk intensity, or prolonged mental or emotional activation causes delayed worsening that only recovers after a couple days deep rest.

A recent episode has me questioning whether I have a genuine PEM component to my condition beyond just a “window of stress tolerance” explanation. I recently did a light strength workout to discharge some anxious energy, and the following 2 days was hit with horrible brain fog, achey muscles and joints beyond DOMS, a sore throat, feeling feverish and chill, restless sleep, and fatigue that made basic tasks impossible. After 2 days spent almost entirely laying down napping I’m starting to come right.

Would be interested to hear how this relates to the experiences of people in here. I see there’s a notable overlap with long covid and CFS, which I have also questioned at various points over the last few years.

i'm so exhausted but doing too much. I lost so much of my baseline since the beginning of the year. Been on my phone like 10-16hrs a day the past weeks bc i needed a distraction from an ocd spiral i was in. someone pls bully me into slowing the fuck down and pacing. i dont know why i cant fucking do it. Like as if i wasnt doing bd enough (severe ish) no i need to ofc keep going to wven get worse wtf

Tl;dr Went in person to church to speak about Open Medicine Foundation. It was hard but ultimately amazing! A big crash is undoubtedly coming but hopefully it will be worth it because folks now know more about ME and also I believe they contributed generously.

My church does a Share the Plate, sharing half of the offering each month with a nonprofit doing work consistent with our mission of love and justice. Last year, I nominated Open Medicine Foundation, and we were selected for October.

I am unable to attend church in person anymore even though I've been a member for 10 years and used to serve as a lay leader. Some Sundays I can't even tolerate the live stream from bed. But I reached out to our social justice coordinator and asked if he would like me to introduce the offering. He said yes, and that today would be a good day because the theme is "It's Hard to be Human," and also our fall festival would be happening after the service, which means goid attendance.

He said I could do a video but I chose to come in person. I wrote words about my illness and why OMF's work is so important. It all felt very manageable, I practiced several times and arranged with my partner to take me in a wheelchair. The staff was also great about making sure I had all I needed, like a stool at the lectern and a place near the front for my wheelchair. In the script for the person introducing me, they added a sentence to remind people not to clap until my headphones were back on.

Things started off great. My body was a little shaky of course but the words were mine and the space is very loving and familiar, so I was speaking confidently. But about halfway through, my nervous system went completely haywire. I started shaking so hard I couldn't speak, couldn't catch my breath, and started crying even though I didn't actually feel emotional. I just kept taking deep breaths and signaled to my partner to come up so I could lean against him.

And I didn't give up. I took all the time I needed without apology, which feels like one more way to embody disability justice work. The whole congregation kept radiating patience and gentleness. It was amazing to look out at all those faces just warmly holding me and my story.

When I finished I reached around to put on my headphones, but looked up to see the entire congregation silently applauding with their hands in the air. I nearly burst into tears for real!

Anyway, it was intense but so worth it. There's still one more Sunday for collecting so we won't know till the end of the month how much was raised but I hope that my being there boosted the contributions.

Our social justice coordinator timed it to land when Open Medicine Foundation does its Triple Giving November. That means that when we sends in our contribution next month it will be triple matched!

So I’m trying to figure this out. I had a crash that started exactly 8 days ago. For the past 3 days I’ve felt largely “better”, but my threshold for what causes fatigue has been way lower.
Before my crash I was able to play video games for like 4 hours straight. Yesterday I had to take a 2 hour nap after 40 minutes of Overwatch. I’ve been mostly unable to use my laptop because it takes too much energy.
Before my crash I was still able to attend a couple of classes a week. Now I’m not able to leave my house.

I’m totally down to answer any further questions or clarifications anyone might need. I’m just trying to figure out if this is the baseline I’m now working with, or if I’m still in PEM but with much milder symptoms. Tysm in advance to anyone who’s able to help me out!

Howdy, all!

Please skip to the very bottom if you want a TL;DR.

I am moderate-severe for CFS, and I wanted to share an app that's really helped me track + document my symptoms, and eventually, it helped me figure out what was causing my migraines and how to reduce them. It also has been super helpful in documenting specific symptoms and events/correlations to share with my doctor, as I have ongoing amnesia. I could NOT adhere to the bigger health journal apps, because it was too visually cluttered, and I felt too overwhelmed to actually ever fill them in. Ebb fixed all of that for me.

The reason I'm writing about it now, is because I've managed to improve from my migraines (taking Nurtec ODT if anyone wants to know) by tracking my patterns of sleep, pain, PEM, fatigue, etc... and I was just so happy to finally make progress. As someone who is forgetful and struggles to articulate their problems to their physician, it was just really nice to have an easy app to document everything, so I could show my physician(s) the patterns of symptoms and see if the medications were helping as well. I truly hope it can help someone here.

PROS:
- You can rate your symptoms in <30 seconds (for me, it takes less than 15 on a good day, less than 30 on my worse days) just by tapping a 1-5 numerical scale of your symptoms. The app will also create a nice graph for you.
- You can write as much or as little as you want. What I love about it is you can go back retroactively to edit your journal entries, in case you are too tired today to fill it in, but feel better the next day to log your symptoms.
- Very visually pleasing. Part of why I didn't like other apps is that it gave me too many options and too many things to look at -- this app strips it to what you ACTUALLY need, so you are not using energy you don't have.
- You can track 5 customized symptoms for free. You can subscribe to add more, but to be honest, 5 was more than enough for me because I didn't have the mental bandwidth to actually track more than 5. The subscription is really cheap from what I saw though, and has a lot of premium features if that's something you need.

CONS:
- No dark mode. While I like the light mode, if you are triggered by white screens or NEED a dark mode, I can't advise this app.

TL;DR I recommend Ebb on the iOS store (not sure if it's on Google Play) if you want a VERY simplified customizable symptom tracker that takes less than 30 seconds to fill in your symptoms. VERY low mental effort IMHO, but this is subjective -- only you know your own CFS severity! You can edit previous days, track up to 5 symptoms for free, and the numerical scale is very easy to use. Fantastic for anyone struggling to track symptoms regularly due to how complex other apps are.

I thought I was doing good with rest and pacing but yesterday and today…. It just feels like my body has given up. How can the medical community fail us like this? I have no energy at all in my body. Even typing this exhausts me. Sorry, just ranting, I guess. I know that I am still so blessed, but this is exhausting and lonely.

Hola, desde España, alguien puede hablar.

Me siento al límite.

Las líneas de ayuda no ayudan.

No quiero que me encierren.

Solo quiero hablar con alguien.

Estoy muy sola.

Si necesitas hablar, yo también estoy aquí.

Esto es muy duro.

Está pegando fuerte.

The weather is gonna be perfect all week…sunny, perfect temperature, and peak foliage. But I became bedbound last month, shortly before the start of autumn. My favorite season. The only season I really give a shit about. I don’t care about summer that much, I don’t like sitting out in the heat if there’s no body of water. And nobody is expected to be outside during winter. But October is the best month with the best weather, and I couldn’t even enjoy it before becoming severe. My illness trajectory is progressive, once I reach a certain baseline I just don’t improve and I only get worse so that means I’ll never be able to enjoy autumn weather again. I have this knowledge that it’s gorgeous outside but I can’t feel the air or see the leaves. And again, I can’t even say “maybe next year” because I’ll probably be very severe next year. This illness is so depressing, I’ll never accept this…

TLDR: anyone else find hunger can trigger/increase PEM?

I’ve always been sensitive to hunger, tendency to get hangry 😤😅 pre-ME, needed to eat snacks between meals etc.

I find if I’m a little late to eat a meal, or don’t have a snack, alongside hunger and grouchiness I sometimes get a touch of the beginnings of PEM - sore throat, headache. When I eat it subsides.

Caveat that I think I’ve been in rolling PEM for a while, so it could be the PEM is lurking just below the surface, so to speak. And any additional stressor - hunger, less sleep, menstrual cycle - brings it out easily.

Not something I’m concerned about, just curious if others experience similar :)

Of course, I've had ways of "bathing in bed" that I've used to try to maintain my hygiene over the months, but this is the first proper shower that I've taken since early last December.

I'm so tired now hahaha. jfc. my arms are going to fall off. But I really had to do it.

I wish I could say that I'm proud of myself, but I'm mostly just embarrassed and drained.

I always feel so awkward when socializing with non disabled people... and it's hard to maintain friendships with disabled people. I feel like because I have such limited energy, I have to be so thoughtful about how I spend it and where I spend it... and I feel so disconnected from healthy people. Like even basic conversations feel like I have to lie. I recently had a colleague ask me my favorite kind of music. I can't listen to any music because it causes me to crash..can't say that, so I lie and say "rock". Then they ask me if I'm traveling anywhere for the summer...I can't travel because it causes me to crash so I lie and say "mexico". I feel like I'm always lying to keep them comfortable. On the flip side, when I try to make something work with a disabled friend, we don't have our spoons align on the same day. Either I'm too sick or they're too sick to hang out...I'm just feeling weirdly lonely. People assume I decline social invitations because I don't like them but the reality is that some days I just don't have the energy to spend on frivolous things like socializing because I need it for more critical things like showering or catching up on laundry. I'm just so bummed out. My life used to be so different before the illness.

I’ve never once improved. I can hardly think even as the contents of my brain putrify into a fleshy soup. Excluding the contents of a bucket list, I don’t think this is something I want to continue pursuing. My teeth are rotting. My bones sting. My friends are leaving and I’ve become so very scournful. I’ll never love again. You can be optimistic yet the sheer chances of myself finding a person who can tolerate how disgustingly resentful I’ve become is next to none. So many appointments, months inbetween eachother. It’s like they don’t care I’m rotting. “It’s just a few months wait.” During of which I can feel myself worsening by the genuine day.

I’d try to ruin myself like I used to crave yet now that isn’t even an option as my bodies ruined itself on my behalf. Humans are so inherently selfish. I can’t wait for another test to come back with “normal.” Labs.

I don’t want to be this. But I never got a choice, and I likely never will. I hurt.

So I have mild ME (newly diagnosed) and have been keeping daily logs since mid-July to track my symptoms and PEM patterns. I am averaging 5-6 days of PEM per month. Is that a lot? I know any amount of PEM is too much, as the goal is to avoid it completely. So maybe this is a dumb question.

This month I’ve already experienced PEM 5 days and it’s only the 18th…and yet the past week I’ve been feeling decent overall. The last day I had PEM was the 10th. I’m still somewhat fatigued despite 8-10+ hours of sleep but my symptoms have been tolerable the last few days.

But I know that’s undoubtedly because I’ve been resting more, keeping my housework lighter, spreading out my 10 hrs of secular work over 4-5 days, and having more help with childcare throughout the week. I can’t help but gaslight myself on my good days. I have to keep reminding myself that I have good days because of proper pacing.

I guess I’m just needing to express my frustration and get some validation.

I was hungry and thought I'd make something simple: a bagel and cream cheese. This meant I had to:

1. Walk to the pantry, get bagels, open package, pry bagel halves apart, put bagel in toaster, close up bag, return bag to pantry.
2. Walk to refrigerator, get cream cheese, bring cream cheese to kitchen table.
3. Get knife from drawer and plate from cupboard.
4. Pour glass of water.
5. Remove bagel from toaster, sit down, spread bagel with cream cheese.
6. Get cream cheese on fingers. Realize I’m out of napkins. Get up from chair, walk over to counter, grab paper towel.
7. Eat bagel (finally). 
8. Carry empty plate to sink, rinse it and put in dishwasher.

9. Return cream cheese to refrigerator.

10. Write Reddit post about how hard my life is. 😂😭

Bonjour
Est ce qu il y a d autres personnes qui ont la B6 élevée ?

Hi all

I’m 3 months into a vicious crash, not diagnosed me cfs but seems related. I teeter between feeling inflamed in body (including some neck and chest splotching) to cold extremities, paleness and weakness. Severe insomnia (every night 2-3 hours), buzzing in cracking noise in head and sometimes a cracking noise, false smells and sinus pressures, very limited cognitive functions, exercise intolerance, etc.

I’m in a living situation now where I can’t be dependent, so still need to cook, drive to get meds, and deal with myself. Father in CO could maybe help in future but would require a long travel to go back home. Uninsured waiting for Medicaid now so medical system is no help except out of pocket (but no job).

What the hell do I do to improve here given my situation? Feels like I’m backsliding and going to lose ability to care for self soon. I scaled back all unnecessary activities and tried more aggressively resting during day, but still in thick of it, along with a partner who doesn’t understand. Feels like all cards are stacked against me

so... technically i can push myself to 3000 steps. With adrenaline tho. This happens once like every 4-6weeks (when i go to the stores and get motivated to go to more than one place). I can shower even while standing. But i cant without feeling like a zombie for hours. So i do that while sitting.
Things like crocheting give me brain fog. Cooking is too exhausting for me. Eating cold big meals makes me feel very tired all day long. I can for example vacuum the house for like 10minutes but afterwards i need SO much rest. Oddly enough while shopping is "ok" i cant go for a walk outside, 800meters and i'll have PEM the following day. Idk why its different outside.

doing paperwork, pen palling, etc. is all giving me a lot of brain fog and also often PEM.

Mostly i lay in bed 20-22hrs a day. 15-19hrs in the dark (minus my phone or a small very dark fairy light). On bad days i need headphones/ ear plugs and a sleeping mask on. Some days i can barely tolerate going to the bathroom because of the light. I could definitely push myself and lay less in bed but i feel like pacing wise its the only way to be okay...

I wake up in pain most days. when i crash i cant walk properly like i'll be shakey af feeling like i collapse any second, wobbley knees etc. Brain fog and fatigue like crazy. Eye pain. Bad depression and moody asf. Whole body hurts. Ear ringing,...

The thing is, i can still do stuff. But i also been stuck in rolling pem all summer long, so like i can do stuff but i'll pay the price.

Would you say i'm severe or moderate?? I'm so confused by these terms, because i feel like no label really fits.

basically the title. watched a few too many videos of people... not surviving MECFS. Of family members grieving. Then also had an online fight with people complaining bc i have a fundraiser running for a wheelchair accessible car... then my bpd got triggered now i feel hopeless and have a lot of self hate. Uhhhhh. I NEED HOPE or sum?? Please.

ignore the mess haha... just had to get rid of my desk due to mcas and the wood of it triggering me. which is sad. but also i didnt use it in months. which is even sadder because i'm an artist. but oh well. Here's my bedroom!

Rare symptom. More people have this? I'm severe ill bedridden for a couple years with very severe LC / ME and PEM and many extreme physical symptoms.
One of my symptoms that seem to be very rare is that my whole right body side: my right brain half, my right part of the spinal cord and my right arm and leg have these biting prickling sensations deep inside, it comes and goes and stays for hours to days. It's literally in the front of my right brain half, some sort of electric activity deep inside and then it goes through the whole right side of the body, through right side of the spinal cord and arm and leg, it's not weakness or tingling or sleeping limb feeling as often is with neurological diseases so such things are excluded, it's more like electric continous prickling and biting symptoms from this internal front part of the right brain side and through the right body halve.

I don't know what can give this in one brain half but also right spinal cord and arm and leg at once. Do more people have this symptom? And found out what it was related to? They can't find anything and I can't find what this could be, because it’s from brain to feet. I‘m bedridden because of the severe exhaustion and PEM. But also have this severe symptom and also many more like my weight is only 85lbs while eating normal. My body is so severe ill.

I feel like i am drowning in “thoughts and prayers” and “I really want to help you” and “get better soon” but the river of actual help and support has run dry.

I don’t know how things will be moving forward but my friends have been so wholly unsupportive to the point where i have to beg for comfort or for ppl to help me with groceries since I have been mostly stuck at home.

It’s just so shocking from a leftist tight knit friend group who are “all about community and mutual aid”. Has anyone else had similar experiences? How did it evolve over time?

How do you guys deal with the guilt of not making any money at all and not being able to do anything for your family???

My friends and cousins are making so much money, supporting their families, making them happy. I was so much better than all those people, like everyone knew that I am gonna make it big in life....

Its been 11 years since it all began. At the beginning I was young, so I used to think, dont worry, you will make it, you still have time. I am 30 now and I have literally earned in 9 years, what my friends earned in their first 6 months of jobs...

I have improved a lot in the past 2 years, like the first 9 years, there was no growth, I used to lie down and watch cartoons, listen music and procrastinate all day but the previous two years I had a decent growth, but now with all this growth, now I have enough energy and time to feel guilty about all this stuff....

I try to keep myself busy, but these thoughts dont leave me, I have even tried sitting with these thoughts, but I feel this stuff for atleast twice a day....

Now with some energy, I find tv boring, procrastination disgusting and I am loosing interest in passive and easy sources of happiness but I dont have enough energy yet to pursue active sources of happiness....

Tw: light past dying mention

Ive been trying to do better at pacing and avoiding triggers. A big one is my environment not understanding dynamic illness. If im up, im fine to them. Lots of arguments i couldn't win and stopped engaging in.

With a combination of none of my other conditions being too flared up and pacing well, this week has been more moderate than severe.

In 2022ish, I was severely underweight and honestly flirting with death, very severe. Ive already had the talk with my doctor about potentially never being able to work again, but ive been able to engage in low exertion games with lighting and graphics settings adjusted. Huge "improvement" in ways. Beats laying in bed with my eyes closed. Still probably 60% in bed.

I do feel "tettery," so im taking it a bit easier but ive never seen so many "better" days in a row. I have an appointment tomorrow so I dont think it'll last much longer.

I wish 2022 me could see this for encouragement. This disease is ruthless.

Tl;dr: in 2022ish, i was very severe and not doing well at all. Today, ive had a more moderate week than severe, I think a big part is my other conditions being calm and pacing.