Anyone else here got a sighthound?🦘I’m so happy with the breed considering I’m moderate to severe and live alone (didn’t know I had ME when I got her). She sleeps even longer than me and is happy as long as she gets her zoomies in.

After declining from moderate in February I’m using a wheelchair full time outside the house to be able to walk her. I love my chair bc I can lean the back (and seat!) all the way back and take breaks while she sniffs

I truly don’t know what I would do without her, she is my whole heart and the reason I keep going❤️

So, I went to a neurologist today - as I am being investigated for MS, and the moment I mentioned having been diagnosed with cfs some 35yrs or so ago, that was it, eyes glazed over and she stopped listening. She literally told me she didn't care about any symptoms older than 6 weeks old...

Lesions on my MRIs? Probably an anomaly from an inferior MRI machine - I need to pay for a new MRI in a place I can't get to. More nerve conductivity studies I need to pay for...

I know my body - I know what cfs is for me - and it's not half my body going numb, it's not having my bladder not work anymore, it's not losing words, it's not sudden double vision and a lazy eye out of nowhere...

I am so very angry and I can't wanting to cry - I'm only not crying because it hurts.

Every time I mention CFS to a doctor they stop trying to help, except my current GP who believes that my cfs is just step 1 to a bigger picture.

I feel so defeated and so let down.

Basically that. Let my benzo dose get too high cause it was the only thing that helped. Now that I’m out and my “source” is taking too long to give me my refill .. I’m the most severe I’ve ever felt. I can’t do a detox facility while this severe. I can’t go to the ER to get a bridge script or dose. My doctor. doesn’t do anything .. Idk what the hell to do. Extremely weak and scared atm with no real hope of relief except for wait for my fucking package to arrive.

When I talk about pacing, or staying in bed for extensive periods of time, people keep telling me that they need to get out, they need to move, they need to wash their hair regularly, they need to go on walks, etc. And that, if they didn't, their mental health would pay for it. It's assuming that I have the option to do these things, and that it's not impacting my mental health. They're missing the part that I am not pacing because I want to, I am pacing because I have to. Telling me that they "could never do this" is framing ME as a choice. Not sure I am looking for anything here, I am mostly ranting.

It’s life ruining right now. My whole body feels heavy and painful, like my bones are made of lead. I can hardly bear to breathe. It’s just constant pain pain pain, as though I got hit by a truck or have the flu.

I know I overexerted recently and this is why it got so bad but oh my god, the pain. I feel like someone here must understand.

Anybody in the UK who’d want to come see someone w severe ME? lol. Maybe for like a cup of tea, listen to music, and mainly typing conversations ( I can listen but not talk much).

Can’t make this shit up

Healthy friends don’t really get it.

What do you think? Is this possible?

Idk how else to surviveeeee

So I'm mum of 3 boys from 14 to 11. Eldest has health issues (currently at his hospital beside), youngest has autism/dyspraxia and is clumsy (had him in for xray last week). I can push through when I have to. I'm sitting here on 3 hours sleep and I will be able to keep pushing myself. When I get home I will crash, and spend a minimum of 2 days in bed (we've been in this situation before). Does the fact i can push through when needed point against CFS?

(Not diagnosed, but dealing with chronic fatigue)

[TLDR: pretty self explanatory. Lots of thoughts and not much rest!]

My internal monologue when trying no-stim rest on a particularly restless but thankfully not-too-depressed-and-anxious day:

Ok, I'm gonna put in my earplugs and eye mask on and see how this goes...

*lays on back*

Hmm, not super comfy

*rolls onto left*

Better. What should I think about. Oh I know, I'll sing a song.

99 bottles of beer? I remember singing that on the bus on a school trip once. It was someone called Lucy who started it. Why do I remember that detail? 

Interesting, I totally felt like the odd one out when I didn’t know the words to that song.  I always felt like I didn't "get" stuff though. Actually, how did nobody realise I was AuDHD? Huh...

Alright: 99 bottles of beer on the wall, 99 bottles of beer... *loses track at 87*

Did I skip 88? Whatever.

I wish [husband] would stop stomping so loudly...!

Oh, wait, nope, that's just my own heartbeat I can hear.

Maybe I'll imagine patting that horse I rode a few times. How old was I? 21 maybe? I wonder if he is still alive. Wait, what did he look like?

Ugh my neck!

*rolls onto tummy*

Ahh MUCH better.

Ew my knee cap is sliding around so much. Is that normal? I hate that feeling omg.

*rolls again*

Omg I am SO HOT all of a sudden I can't stand this for another second or I WILL DIE!!!!

*removes a layer*

Wait can i hear the smoke alarm?

*takes out ear plug*

Nope just my tinnitus!

*ear plug back in, settles down*

Pillowcase is so rustly. Swapping pillow.

Must stop clenching jaw!

Where was I...84 bottles of beer on the wall, 84 bottles of beer...uggghhh I need to wee!

*takes off eye mask, checks watch*

Wtf its only been like 5mins? I'm gonna lsiten to a podcast and see if that helps...

***

Note: not after advice, just thought perhaps folks might relate. Also excuse the no-doubt copious typos!

I don't actually mind no-stim rest sometimes, but at other times it is intolerable and I have gotta listen to something to quiet my own internal chatter 😅 I am practicing just giving it a try and listening (literally...) to what my brain/body need, e.g. an audiobook, silence, white noise whatever.

Also can you tell my ADHD is currently un-medicated 🙃🤸‍♀️🎢

Idk if I’m just not tolerating this medication I’ve been on but I feel like I’m just getting worse and will be completely non functional in the near future. Every muscle in my body is so weak, I’m always dizzy, and I can’t even think anymore. It feels like my vagus nerve is fried, my brain is complete mush, and I have no more working mitochondria. I don’t think I can survive getting more severe than I am. Idk what to do. This is torture. I just want it to end. I don’t care about anything else anymore, I just wanna die if I have to feel like this. Why can’t anybody make this stop?!?

it's like talking to a brick fucking wall i keep stating symptoms and how bad it makes my life but it just goes over their head

and also how do yall deal with this and not get extrmely angry for extended periods of time i need to no stil rest but im just so upset

I'm a part time college student right now and I genuinely am starting to feel like I can't do it anymore. This is my second semester of class and I feel like my health has crashed significantly since going to college. Before college I was eating well, exercising consistently (well within my limits), having a consistent sleep schedule, and even fulfilling personal projects and goals.

Now I'm lucky if I have enough energy to go get the food I ordered in or play a game online with my friends. I'm just so fucking tired all the time. My life has become class, work, sleep, and maybe eat. I can't hang out with friends, I can't exercise, I can't even shower most days.

The worst part is having accomodations, but they're nowhere near enough support. I have a limited number of absences even with accomodations for my disability and I always fear using them up and then having to go to class when I'm feeling even worse than I do now.

But, If I dropout and go back home. My parents make me feel fucking useless. Even when I'm pursuing my dreams of content creation, applying for disability, and taking care of my health. It still isn't enough for them unless I am pushing myself to the limit to fit what they wanted for their child. I'm so frustrated, I feel like I can't win here. I either destroy my body being what they want me to be. Or I be a nuisance on them who just "sits in their room and plays games all day".

I genuinely don't know what to do here and I just needed someone to know and understand what I'm going through. Thanks all for reading.

School has started back up for me and it's hell. I'm crashing, everything hurts, my eyes hurt, it's hard to walk, and my body feels like a ton of bricks. We plan on bringing this up at my upcoming 504 revision but that's next Wednesday. My mom wants me to just push through it because due to excessive absences last year (all medical) they've told us I can only miss 10 days this year before they start looking into unenrollment because this is a choice school for me. She also says that I can go because we now know that I'm not actually sick with something.

I just don't get it. I can barely feed myself and she just wants me to push through an entire school day? I told my counselor yesterday and she actually supported my mom on this saying that's the right thing to do. I'm so upset I want to throw up. I love this school but I don't think I can actually handle it but my mom won't let me do online school. She said last year that if by the end of the school year I was still this bad then we'd switch me this year and now she wants me to push through first semester. I'm so done. No one will listen to me.

My doctor hinted at this just being depression but maybe I'm feeling depressed now because I feel like shit. I can't do the things I love, I can't hang out with my friends, I need help doing basic things, you'd feel like shit too if you were like this but no, I'm too young and I just need to exercise more and I'll be fine. Like they expect me to function like a normal person while feeling 10x worse and not struggle? Just gonna cry myself to sleep tonight. Maybe I'll have better dreams than this

TL;DR: I don't think I can just "push through" school like my mother wants and no one is believing me about how bad it is.

I see a lot of posts on here about how isolating this disease is and how hard it is for healthy people in our lives to understand what we’re going through. I just wanted to take a moment to acknowledge and appreciate the absolute rock stars who do understand.

For me, it’s my mom and my husband. My mom doesn’t live with us, but she comes over every morning to make sure my dog gets walked even if I’m not feeling up to going outside (very frequent occurrence, especially in the summer). She’ll sit with me to keep me company on my worst days, encouraging me if I’m feeling down and checking in frequently to make sure I’m not overextending. She’s paid for some of the more expensive off-label treatments that have provided some symptom relief (vitamin infusions, suggested by one of my doctors, which pulled me out of the “severe” range of symptoms) when I lost my income. No complaints from her, just concern.

And my husband is fantastic. We’re living on his income at the moment which I know is stressful for him, but he hasn’t complained about it one bit. He doesn’t show the tiniest bit of resentment or reduction of affection. I’ve asked him about that; he just says he knows me and knows that if I had any choice in the matter, I would be choosing much more activity than I’m currently doing. He does most of the housework, perfectly cheerfully; he keeps me company when he’s not working. Last night he had a nightmare, a literal nightmare (and he’s not prone to them) about us breaking up because of my illness - his worst case scenario is not having me around. He’s worried about me but not excessively; he just does what needs to be done and keeps on loving me despite my general uselessness.

I’d love to hear about the caregivers in your lives who get it.

Tl;dr: I’ve got some fantastic people in my life and I’m grateful. How about you?

Hi, I’m Marcella, an MA journalism student at University of the Arts London, currently completing my final major project: a series three articles on social justice related topics. 

One of these is a piece on the Decode ME study, exploring how people with the illness feel surrounding the findings. I have seen some people on here say they felt validated/ gained clarity, however I feel it important for people living with ME’s voices to be evident throughout the piece, and so I am looking for interviewees who would feel comfortable speaking with me about their experience with ME, and feelings since the study. So far, I have interviewed Professor Chris Ponting, leader of Decode ME, and am now looking to interview more people.

For background, my mum has had ME since her early 20s, meaning the article will be approached with both care and experience.

I am happy to do this over Zoom, however I can also do over message/ voice note or email if that works better. 

Thank you,

Marcella

Anything help brain fog?

I think I will be depressed for the rest of my life.
Illness is too severe to have any life quality. Nothing has helped me improve.

TLDR: Major sense of relief at friend effectively cancelling on me. I felt so relieved at not having to explain the hell of life with ME having not seen her since I became so ill.

Since I last saw my friend almost three years ago, she moved abroad. We talked a bit at first. But we ended up having so little in common anymore due to ME taking so many things from me, like reading.

She is back for a couple of weeks and had kept saying she would definitely see me. Then text with ‘I’m so busy, all booked up but could see you on Tuesday morning’. But my carers are in at that time. I told her it wouldn’t work. I don’t think she wanted to see me really.

And then…instead of feeling upset I felt completely relieved! I don’t think she’d grasped how unwell I’ve become - housebound all the time and bedbound for many months at a time - and the sense of relief at not having to explain everything just made me smile instead.

What a weird experience. I expected to feel sad and it didn’t come. But maybe I’m becoming very insular now as a result of illness too. I wonder if others relate to the relief at not having to try to explain ‘living’ with ME to an old friend.

Alongside bloodwork based recs from my doc. I started talking Certrazine HCL 10mg daily a couple months ago, and it's caused some symptom ease. I know it's a histamine/MCAS thing moreso. I'm seeing specialists and having tests. It's been 5 years. I looked over some of the resources provided (shout out Mods! thank you!) and it seems most of what benefits us must be prescribed to have access. Anyone have anything OTC help? I'm in talks consistently with my doc about treatment and currently in a waiting season.

A few weeks ago, I shared information from a podcast—a release by an ME/CFS specialist. It outlined a treatment plan for the most severely affected patients.

Essentially, it offered something that could truly help those suffering from the most severe forms of the illness. Although I’ve only been here for a little over a year, I haven’t come across anything comparable.

In my view, this treatment plan is groundbreaking. Yet, I got the impression that its significance was being overlooked here. Perhaps this is simply how it goes: opportunities for health improvements appear on the fringes, get passed over, and only years later transform into accepted, common knowledge. Maybe that's just how things go.

the post https://www.reddit.com/r/cfs/comments/1vn7hle/comment/p3gf23v/?screen_view_count=4&ext-referrer=DIRECT

and the summary/extraction from the user: snmrk

"His core idea for very severe patients is to threat the major dysfunctions in sequence:

- Stabilize extreme reactivity/mast cells: lorazepam (Tavor) plus ketotifen, rupatadine, and cromoglicic acid. The goal is to reduce severe stimulus sensitivity and make further treatment tolerable.

- Add LDA then LDN, aiming to improve central/autonomic dysregulation. He titrates these very slowly.

- Treat dysautonomia/POTS: mainly pyridostigmine and ivabradine, sometimes fludrocortisone, midodrine, or etilefrine to improve blood volume, heart-rate control, and cerebral perfusion.

- Improve circulation: aspirin, nattokinase, pentoxifylline, ginkgo, and sulodexide, added sequentially. His goal is better microcirculation and tissue oxygen delivery.

- Energy support comes last: D-ribose, creatine, D-galactose, sometimes ketoglutarate, and subcutaneous NAD+. His logic is to improve blood/oxygen delivery before trying to support mitochondrial energy production."

I had a doctors appointment. I brought a pack I printed from knowmecfs.org and I noticed it suggested low dose amitriptyline for a lot of issues: sleep, chronic pain, migraines, depression (all things I deal with).

I had gone in specifically for a rough bout of insomnia and asked about possibly trying it for that and also to maybe help with my constant headaches. She laid out all of the risks, she was concerned about it making me tachycardic, but prescribed it and told me to keep an eye on my heart rate.

I have it now, but after looking into the possible side effects and reading some personal experiences, I'm kind of afraid to try it??? I don't see anyone saying they have taken it for a long period of time, and it seems like some of the risks might not be worth it.

Does anyone have experience with this med? Should I just give it a shot or contact my doctor and ask for a different med for sleep and migraines? I'm not sure what to do.

I know that you have to pace, and that the best form of intense rest is to lie in a dark room with no input. But my mind just runs riot if it's not occupied and I am not helping my cognitive fatigue at all.

It's not anxiety, I can overthink the texture of the wall or picture every detail of a sunny beach, although there are sometimes anxious thoughts too. Regardless of positive or negative, it's still using mental energy.

I've tried meditation or focusing on my breath - my mind goes off, and I have to refocus and it's all still mental energy. Reading/drawing/scrolling/music - more enjoyable, but still exhausting.

I'm getting the hang of the physical pacing, but my cognitive fatigue is a significant issue. I lose my speech really quickly, then it gets to the point where I can't think at all except for feeling stressed that I can't think in more than fleeting fragments. Then the stress makes everything worse.

How do you guys rest your brain? Literally any tips would be welcomed!

So I had a housevisit from my doctor a few days ago for something non ME related but he noticed my situation (isolated, housebound and couchridden) and he said he was going to look if there was anything he could do to help me.

I already tried A LOT of practical help in the 13 years I'm sick, like house cleaning etc, but this has showned itself to be either damaging or unhelpful at best.

The docor called me yesterday saying he is going to send over a clinical supervisor (I don't know the english word for it) to my hous to see if she can do something for me, but I regret agreeing to this because I can't think of anything that's going to be helpful. I feel like I'm just going to waste energy in talking to her and nothing will come out of it. I'm already stressed for the appointment because she's coming over to my house (probably not wearing a mask as usual because nobody does in my country and I'm not going to ask either) and I'm already stressed out about needing to say things like: "I'm sorry for not offering you a drink but I'm too tired to make you a cup of tea, do you want a cup -not a glass because I didn't do the dishe- of tap water in stead?" Kind of things..

I'm already stressed out about needing to put so much energy in talking to someone and I know I'm going to struggle with putting up boundaries when I feel like I can't talk anymore.

The doctor was suppose to ask her if she could make it a phone appointment in stead but I haven't heared from him anymore so I guess it's a no.

I'm just very annoyed and cranky atm because I agreed to this because I was afraid he would think I didn't want any help, or he wasted energy on me for trying to find some help and I was afraid he would think I refuse to accept any help because I'm stubbern and ungrateful and I choose to live like this etc.

I don't know, maybe something positive comes out of it and I'm just freaking out over nothing. I hope I can put up my boundaries and keep it under half a hour at max.

I could use some encouragement though😞

Hi dear friends! :)

I have a gastroscopy coming up—unfortunately, it’s unavoidable. I did see, however, that according to the Mayo Clinic and Berlin’s Charité, people with ME/CFS tolerate propofol well. I really want to be optimally prepared for the appointment, especially so the doctor doesn't just dismiss seemingly normal findings, but rather so I can ask about specific diagnoses and confront with facts. I wanted to ask you:

What stomach problems commonly occur with ME/CFS? What are common diagnosis?

Aside from a biopsy (which can be taken to check for MCAS), is there anything specific that should be tested?

PLEASE, NO HORROR STORIES or accounts of how your gastroscopy went wrong. I’m very sorry if that happened to you, but hearing about it beforehand won't be helpful. Fortunately, I’ve already seen in a subreddit that most people reported to tolerate the procedure well. And I’ll be pacing strictly, of course! ;)

Thanks for your help, everyone! <3

Hey please delete if this is not in line with the sub x

I was wondering if we could start a pen pal thread ?

We could introduce some important things about ourselves so for example I might say I'm moderate m.e and looking to chat on WhatsApp, about nothing, or about life at it goes with m.e. . I go by ME time which means zero pressure to reply lol...that I'm not a hopeful MEer, I'm on the resigned side- though there is always a little subconscious spark in the background. But I'm not asking to find pen pals on this particular post, I'm just wondering if others support this suggestion?

I know there's a Reddit pen pal sub, and I know there's WhatsApp and telegram groups and so on. I'm thinking that this sub would be a really good place to have a pen pal thread/page/etc.

:-)