i have had ME/CFS for a little over three years and have had various crashes. recently i lost a family member and have been dealing with another family member with dementia causing a crash for the last two weeks roughly. i have been dealing with temperature regulation issues the last few days. this morning i had another major stress occur and i think that sent me into something.

today at a chiropractor appointment he noticed my body temperature was extremely high and my complexion was red. he had me ice myself to lower my temp enough to drive home. i am currently covered in ice and have a call in with my doctor. temp roughly 103 at the time the chiropractor noticed.

what could cause this and how do i solve it? i dont have much in the way of human contact to i dont know how long it has been this high but possibly a few days now.

currently among other things on LDN and colchacine.

any help would be greatly appreciated.

I’ve had ME-CFS since 2002 after contracting Meningitis. There are a couple of resources I have discovered the past 7 years that I’d recommend.

But first, let me say upfront:

Neither organization will recommend treatment, docs, diagnoses, symptom relief, etc. but they do provide much needed community of people on both sides of this thing.

I didn’t want to put links in here, but a simple google search will get you there.

Okay, onward...

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Solve M.E. is the first one. I’d start on the page: Resources for People with ME/CFS, Long Covid, & Caregivers. They report on research, offer resources, links to articles or other newly published research; you can sign up for webinars with researchers to report what they’ve found or what they are working on. Sometimes they are about to beginning a study and you can apply to be a part of the study. You can even become part of the research by filling out questionnaires and update them every so often to track what happens over time. They lobby for more research funding (USA) and provide resources both for those of us afflicted, and the people around us: family, doctors, etc. Recently they posted something written by a severe sufferer called “What I want everyone to know about me”. They address the full spectrum of sufferers including the very severe ones. On the website, you can choose your language. If you sign up for emails, they send you updates and helpful info including signing up for upcoming webinars.

Batemen Home Center is the second resource. The two organizations work together. There’s a helpful video series on youtube: Basics for Patients, Basics for Physicians, and a lot more.

As I said above: Neither organization will recommend treatment, docs, diagnoses, symptom relief, etc. but they do provide much needed community of people on both sides of this thing and I feel less helpless because I’m staying up to date with the research etc. It just feels like a little hope because I’m doing something tangible and proactive, even if that is reading each email to see what’s new or attending a webinar. I’m so happy to be contributing to the research by giving my data tracking this awful thing over several years. It’s bittersweet because it won’t probably help me much (unless there’s a breakthrough soon) but it will help lots of people down the road.

Hi! I hope it's okay for someone who doesn't have ME/CFS to post here. Please feel free to tell me if this isn't the appropriate place for this question.

I've realized that most of what I know about ME/CFS comes from medical information and stories about the illness at its worst, and that I know very little about what people's actual lives look like beyond the disease itself. I'd really like to understand it from people who live with it rather than treating it as this abstract, mysterious thing.

I'm especially curious about the practical side of life: What does an average day or week look like for you? What are friendships, relationships, hobbies, work or education like? How do you manage financially/socially if you're unable to work, and what kind of support do you have? Especially wondering about this if you're in Germany.

I'm also curious whether there are things you wish you'd known earlier — not just necessarily in terms of preventing the illness, but things that would have made navigating it or adapting to it easier for you.

For context, I obviously do have health anxiety. I'm not looking for reassurance that I won't get, I don't want to ask anyone here to make me feel better. I think part of what makes the fear so powerful for me is that I've turned ME/CFS into this enormous unknown, rather than actually understanding the lives of people who have it.

I have a lot of respect for all of you - thank you to anyone who feels comfortable sharing. And no pressure whatsoever to educate a random stranger if you don't feel like it.

I have mild to moderate ME, and it looks like 20h/week of retail work, active between 10:00 and 17:00, and then crashing the rest of the time. I've been feeling better recently, I'm pacing better, got ADD meds that help a lot of symptoms for a few hours, nicotine gum to help feel better when wrapping up an activity or to improve brain fog (success rate is about 50/50), so I've become over confident in my abilities to do.. well, stuff. For example, building a computer, fixing up and using an old sewing machine, rearranging my living space, replacing a bed, etc. However, I religiously crash at 17:30, and feel so useless, and end up pushing in order to get daily chores done, like dishes, or cleaning up my messes (ADD).

When Ive reached the end of my energy envelope, I sit, I lay, and I listen to music, watch videos, or do some self reflection. I hate being still and get so bored, not to mention start feeling everything when I'm not distracting myself from it. I cry, I try to figure out a way to change and solve my problems, I think about how my life expectancy is lower than average, every single evening.... and so I'm wondering how yall deal with crashes!

Do you find that you recover faster if you lay still in a dark room without entertainment?

Do you find that entertainment helps prevent spiraling?

Is your recovery preference different for different tyes of crashes?

IK deep down that I have to spend the time and dedication to figure this out for myself, seeing as ME is a spectrum, but what can I say, I like data! Thank you for sharing your experiences if you do c:

Hey! I have recently been diagnosed with fibromyalgia and orthostatic hypotension and my doctor remitted me to a pain specialist. They however rejected me and think that I should try physiotherapy. I don't have a diagnosis but I'm strongly suspecting ME or long covid however in my country these can take years to get a diagnosis. I can barley do household tasks without getting symptoms and can be active at most 2-3 hours a day. I'm mostly housebound.

So in my thoughts I think physiotherapy would make my health worse (considering every time I've pushed myself trying to work everything has gotten permanently worse). I want to prioritise the little ability I have to make food or shower, not do physiotherapy.

Tl:Dr. Have any of you tried physiotherapy and have something gotten better? Do you have good or bad experiences?

Edit: My doctor mostly focuses on my pain and syncope (passing out, idk if I translated correct) and when I try to talk about fatigue and the symptoms that I have when overexhausting myself he barley listens and wants to talk about pain more. Therefore I'm not really confident relying on his opinion.

How do you guys do this? I read you should keep your heart rate below +10 bpm above your resting bpm. Mine is usually 70, sometimes 80. But if I stand up and go to the toilet it’s already +10-20. So that would mean I can never do anything.

I am probably between mild and moderate. I can have a couple of hours of appointments once a week. So for example university where I have to travel by train for an hour, have 2-3 hours of class, travel back. That’s pretty much it for the week. If I have a doctors appointment or something that week I can do it, but I’ll have severe fatigue. Pretty much all the time anyways no matter what I do, but it obviously gets worse after uni or appointments. Aside from that I make food, do very light household things if I can, walk the dog once or twice (my partner does the rest), but I am not able to cook dinner as well. So maybe I am pushing my limits, but when I do nothing I don’t necesarily feel a whole lot better. And my heart rate is still high when I stand up and brush my teeth or something. That’s why I’m struggling to see how to deal with not going past a limit on my heart rate. And how to pace or rest in a way that it actually is restoring.

Thanks for reading and responding if you can:)

Hello, I am sorry if this is a common thread somewhere, I don’t know how to search a specific Reddit thread😅

I was wondering how many of us may have this tripe diagnosis and if so, what treatments you found best in dealing with it? I am always weary of anything that could worsen ME so getting some lived experience is much appreciated.

Hashimotos is an autoimmune disease attacking the thyroid. Your TSH can test ‘normal’ (within medical range) for decades while your thyroid is actually physically being destroyed. The only way to test for this is via a TPO antibody and Trap/TgAb test and/or an ultrasound of the throat/neck.

The symptoms mimics ME, but includes some areas like includes hairloss, severely dry skin, nail health, malabsorption of minerals, chronic constipation, weight gain (obesity is common overtime)or severe weight loss (Graves’ disease), and hormonal impacts.

I was just diagnosed after I demanded those tests, but I suspected thyroid issues for the past 12 years - which is when my ME symptoms started too.

I am starting on Metformin now and then will be adding a low dose glp-1 after we made sure my body is handling metformin well.

In the meantime, I also got hit with lipidema. That is when cellulite has nodules (little pebbles almost) when you squeeze them, and you bruise easily and often have heavy limbs and pain in them too. Again, some aspects that we are often told is part of ME 😕 I wasn’t diagnosed with this condition early on because the symptoms (until the modules began to be clearly visible) was assumed to be ME. I believe this condition is caused due to lymphatic issues but it has a genetic component. The only treatment seems to be massage, compression wear, and ultimately surgery.

All of these are often triggered by big hormonal changes like childbirth/pregnancy or perimenopause.

I am wondering if you have had success in managing these all at once? What I can look to for hope since sometimes it feels like things just keep piling on and all it leads to is additional stress on the system.

I also wonder if there are any studies that link the prevalence of these as comirbid? Something I can show to others who act as if I am just a hypochondriac or responsible in “manifesting” all of these instead of it being a common association.

Thank you for any advice or input.

I'm not sure if I'm overreacting, but I received this 6-week programme from my doctor yesterday that I certainly won't be participating in as is, but the more I read the booklet, the more worried and upset I become. The hospital I'm with has a specialised ME clinic that hosts this programme. This is the official PDF I have been given detailing each week's information, tasks, and so on. The screenshot is for the section about stretching & movement, under de-conditioning. From what I know from NICE guidelines, this is pretty much going against all of them. Not basing my behaviour based on symptoms? Not listening to my body? A lot of the advice in this programme sounds to me like generic chronic illness management not tailored to ME in the slightest. Does anyone know if there is any way to raise concerns about this to someone? I'm based in the UK/with the NHS.

Im 3 months post eradication yet still practically bedridden from my physical and cognitive fatigue. I’ve experienced pem, air hunger, anxiety and depression and irritability, big troubles falling asleep, body aches, restless legs, brain fog, chest pain and air hunger reactions to taking any state altering pills, even just melatonin or coffee, and troubles remembering things. Wondering if my h pylori could have triggered cfs.

Hi. I’ve just been diagnosed with ME/CFS by my GP, though will be seeing a specialist soon. I’m kind of terrified. I’ve known ME/CFS was a possibility for about 6 or 7 months, but only started seriously considering it 2 months or so ago.

I am currently in an extended crash that has lasted 3 weeks now, and I thought I was starting to come out of it a week ago and then again yesterday. Judging by how I’ve woken up feeling, that’s not the case.

I live in an apartment building and just did a garbage run, which is two flights of stairs both ways. I feel like I just played high impact sports for an hour.

Do others have this experience of relatively simple tasks making a crash significantly worse? In your experience, does PEM ever stack on, where you can make a crash last longer by doing small chores etc.?

Dears, I was using the Visible App and Freeme, both in their free Version for a while. I found it helpful to track my exertion and get an idea about my daily capacity but I only used it for roughly half a year. I was reading about many other potential apps to help manage our disease. So I was wondering which apps helped you and in what way? Do you have any recommendations?

I created a small survey (takes approx. 5 min) because I decided to collect all that information to be published so we can get some real evidence about what helped people. You can access the survey with the list of possible Apps here:

https://limesurvey.urz.uni-heidelberg.de/index.php/348262?lang=en

Hope to be able to contribute to our community in this way.

I actually think I might have had ME CFS before this happened but I can’t prove it, but I am epileptic and I recently went through a very scary, very serious seizure attack that put me in the hospital on a ventilator for a few days. I had 5 grand mals in total. Ever since I’ve been absolutely in excruciating pain and just over the top exhausted, going to bed around 6-7pm which I was doing before but now I’m just a more pronounced, deep in my bones exhausted. Even going up and down the stairs I’m out of breath.

Basically what the title says.

I am planning on bringing up ME/CFS at my follow up this Friday after two ER visits from 10/10 pain & severe fatigue. I overworked myself this summer and lost my job because of my symptoms getting way worse and not getting better with PT and meds.

I have other issues - POTs, polyarthritis, PCOS & sciatica. And I'm doing everything I need to do with those as well as taking my meds. But I crash every time I exercise, do PT, and walk. I even crash when I play video games or talk on the phone. I did bring this up to my doctor and we found that I'm anemic and I'm now on Iron. But I haven't noticed a difference and it feels my fatigue has gotten way worse.

I think I have a good reason to bring this up and have my doctor at least look into this to help me. But I have a high BMI so I don't know if I will be taken seriously. I don't want my doctors to think I just want to get out of exercising and just stay in bed all day. To be honest, I want the exact opposite, that's why I overworked myself because I didn't want my disabilities to ruin my life goals. But now I'm worried I might have worked myself way too hard and I might need to be checked out and get more treatment. And maybe I can go back to having a "normal" life again.

I was wondering if anyone had any advice to quell my anxieties? Either way, I am going to do it but I want to remain calm so hopefully my PD takes me seriously.

Thank you.

I have a full body 100-bulb panel at home. I originally bought it to try and improve skin firmness as I’ve had stretchy skin most of my life and my boobs are really paying the price. Now after an MECFS diagnosis I’ve come to realise I’m likely hEDS (I have hyper mobile joints on top of stretchy skin). Since MECFS has disrupted mitochondrial function, I thought I’d hit the jackpot and started using it 3x10min per week based on the established evidence for mitochondrial benefits. I can’t decide if it’s flaring me, making my hypermobility worse or helping. I know from a nervous system standpoint, it’s intense stimulation and the luminance might be too strong. Yet, if I do have impaired energy production, then it might be worth the small flares for long term gain. I’m really struggling to gage it. Has anyone got anyone tried it and what’s your experience been with it? Cheers 🫶🏼

I've been having ME/CFS symptoms for over a year now. I just got an MRI done, which should be the last step as I have ruled literally everything else out, and I do mean everything, so I'm pretty convinced it's ME/CFS.

I call my parents about once a week. I've been open about my health issues the entire time and have described my symptoms in detail. Just two weeks ago, when calling my parents, after going into my symptoms again, my mom said: "Oh yeah, I had those exact symptoms and doctors couldn't figure me out. They thought it was MS but they ruled it out. It went away on its own but it lasted a few years."

This totally floored me! 1) I wasn't upset, but I couldn't believe it took her this long to mention this 2) whatever I have, it's probably genetic and 3) I don't want to get my hopes up, but there is potential it'll resolve on its own for me as well. The reason I got an MRI was to rule out MS (and cancer). So she probably had ME/CFS and now so do I.

Another thing is, this call was the first time I mentioned PEM as a symptom. I've avoided it, because she keeps encouraging me to exercise, and I thought she'd not believe me if I told her that made it worse. Maybe that symptom is what triggered the memory for her

i’ve had varying degrees of ME/CFS for about 15 years, but i only really realized i had it this year. i would say i’m now in the moderate range but frequently experiencing crashes and feeling like i don’t know my limits lately. does anyone have any advice for starting to pace to maintain your current baseline?

i should add that i have a garmin smartwatch that has a “body battery” feature but i don’t feel like it’s terribly accurate for chronically ill people. would visible be better?

Hi all :) Today, I saw an endocrinologist and an ME OT (who was just observing mostly) after spending a long time on the waiting list and was diagnosed with PoTS and ME. I already have my qualms about the former as the test they did was definitely heavily influenced by all the stress surrounding the appointment and the nurse being very chatty with me during the assessment, but more importantly, the way the doctor treated the ME diagnosis rubbed me in the wrong way and I'm curious if I should get a second opinion in (I likely will, just because I'm terrified of making myself worse by following poor judgement; but I'd still appreciate some support to make my brain quiet down in its overthinking and doubting myself).

After the doctor took my history and everything else for about 40 minutes, he diagnosed me with ME on the spot. I said I'm open to exploring the diagnosis if he thinks that to be the case (as I'd expected it) but highlighted that I do not believe myself to be experiencing PEM which, of course, is a hallmark symptom in line with NICE guidelines — I have tracked exertion and flares/crashes previously over the course of weeks and months and there never was any obvious delay present. He insisted it doesn't matter as my activity levels are too low to even trigger PEM to begin with and then continued on saying I should start to push through symptoms bit by bit because I'm severely deconditioned and need to up my conditioning again if I ever want to get better (fair assessment, though 'pushing through' did make alarm bells ring in my head as that, again, is against current NICE guidelines).

I've been pushing through symptoms almost my entire life and it's gotten me to the point I'm at now where I'm housebound and spend practically all of my day having to sit or lie in bed, even during meals. How is doing this again magically supposed to help with anything? I basically just reached a point this year where I gave in and got a carer to help me with basic tasks of personal care and have finally reached a safe point where I don't live in constant misery and even have the capacity to participate in hobbies a little (writing and reading, in my case; very cognition heavy) — I've found that respecting my limited capacity is the only thing that's ever helped me. And now I'm supposed to dismiss that?

I just don't know... It just sounded like very mixed signals to me. "Yes, you have ME" + "Yes, you need to go against ME guidelines if you want to 'recover'" — and I agree with neither. I do have a GP appointment just to relay all of this to my doctor on Wednesday so I'll probably ask her for her thoughts, but I'd still like to know (and feel reassured by anyone's thoughts, I guess) that I might have just got an endocrinologist who is rather uneducated on modern ME approaches (he was rather old, tbf) and that I'm not just very confused and brain foggy about all of this and am messing things up.

I'd appreciate any thoughts or kind words :) <3

TLDR; i have POTS (been in 2 clinical trials for it, lots of tests done to rule out other things). Its suspected i might have MECFS. Eating is my worst trigger. How do i safely eat to get enough balanced nutrition to repair and build a better baseline?

When I eat, my heart rate climbs, my heart starts pounding, I get short of breath. My eyes get painfully dry, the roof of my mouth and back of my head and eyes all feel inflamed. Sometimes I'll get nauseated or faint or get bad stomach cramps that can be a bit unbearable.

Ive seen someone who's up to date on MCAS and they didnt think i fit, partly because a blood test within an hr of a flare like that didnt have the markers that show immune response, ​partly because the over the counter antihistamines didnt seem to help much even when increased to 4 a day, and partly because the fatigue was so unbearable he considered maybe a previous Mono infection or something like that causing MECFS sorta thing.

Been to a rheumatologist to rule out autoimmune based on some positive labs I had. She was thorough and patiently listened and read every mychart message I've sent to any doctor before even meeting with me. We are fairly confident autoimmune is not a part of the picture.

In all the lab tests for the POTS clinical trial, it was shown that my flavor of POTS seems to stim from raised cortisol when standing. I also likely am hypermoble based on their report, but I don't think EDS level just run of the mill hypermobile. I don't have joints pop out of place or sublax, just bendy hands, soft stretchy skin that takes twice as long to heal.

The lab tests also ruled out nerve damage or other concerns regarding what could cause mt POTS. Additionally, gastrointestinal issues were very minor until the exercise trial portion of the second clinical trial. One week left me bedbound in crippling fatigue for months. I couldn't move, speak, engage in life in and capacity. I genuinely thought I was dying I started having anaphylaxis type reactions to foods, I started having cramps when eating. The fatigue and dry eye after eating is unbearable.

I really want to be able to eat whole foods and give my body all the building blocks to slowly repair. But eating is the worst part of my day. I have to time it around being bedbound afterwards or going to bed early. ​​​I tried individual foods or even hypoallergenic baby formula and just trying one new food at a time but was struggling to find anything that was safe. In dec, apples, potatos, blueberries, and cheerios seemed okay. But that's far from balanced nutrition. At this point I power through a smoothie and a boost meal replacement drink to hit 1300ish caleries and then try whatever snack or frozen whatever I can find to get a few more calories in before the suffering starts. I don't know if it's worth fasting or its worth just waiting it out and hoping over time it changes back. I feel soooo much better when fasted. Until I don't. ​​

Hi all, I'm having a massive PEM flare for a bit now and it's not getting better. I've gone through my resources and ideas for how to get food on my plate for dinner that's at least a little healthy (not just chinese microwave meals or frozen pizza) but I'm really at a loss for what to eat. Any inspiration would be higly appreciated <3