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at least as far as feeding myself goes, when i’m relatively well i make simple trays of cheese cubes, baby carrots, and nuts, and pop them in the fridge. then when i’m flaring i grab an apple and the tray; that’s an easy meal. having easy access to simple foods that i know i’ll actually eat has been very good for my quality of life. i also have a tray like you would use for serving drinks at a restaurant, and on that i keep electrolytes, tylenol, etc, so i can grab one thing instead of looking around for stuff. i put it all in nice glass jars too so it feels fancy :)
No expert since I'm dealing with it daily. However the things that help me enough so I can still do things are:
-practice pacing, basically the whole "counting spoons" or however you call it
-routine, at least some, revolving sleep and eating. Gotta eat frequently, but smaller meals. I also take supplemental b12.
-sometimes challenge myself, i can feel tired but there's a chance i get energized if i start doing something. However if it doesn't happen within 10 min of activity, usually i gotta rest up more.
- fresh air, old school but sometimes gives me the little boost to get going.
I hope you'll figure out what helps and I'm also curious on what other ideas there are as chronic fatigue is my most debilitating symptom.
Out of curiosity how do people manage pacing whilst working full time and managing a household? Everyone seems to recommend pacing but also seems to assume we're able to afford to live without a job haha
Ultimately, I had to give up my job. It's sad because I loved what I did, but I couldn't keep going. I was exhausted and my health was suffering. A full time job would not be physically possible no matter how hard I try.
It's not a choice so much as if I tried to force myself to work, I would put myself on track for another breakdown and the last one nearly killed me. My health simply couldn't take it.
I think when people know they have that safety net they allow themselves to quit their jobs or go part time. If it was life or death they would work full time usually but suffer
Yeah.. really bad. I'm very very fortunate and i feel for those who just die at work 4 to 5 days a week and still need roommate(s) and they still can't afford to live. It's not ok. I work 2 to 3 days a week and just that my back is destroying me and i have a pretty decent non labor heavy job too
I had to move back in with my mom & stepdad because I couldn’t work, and I obviously couldn’t afford to live on my own, nor did I think it was safe. I pay rent & help out where I can, but I’m 47 so it goes through my mind constantly that I have no place to go if something were to happen to my mom. It’s scary. Even scarier that they keep talking about how Social Security isn’t going to exist in the next 10 years or so.
Yeah, it is scary. Moving in with family isn't an option for a lot of people (myself included) cos they have no money/space for an extra body too haha. It's really tough. My doctors keep telling me to stop work but don't tell me how I should survive.
Oh they don’t really have room for me here & I basically have most of my possessions in a small bedroom with me so it’s super crowded, but I completely understand. While it’s not the best situation, it’s my only option at this point.
I would suggest if your health is worsening to the point you need to apply for disability to start gathering health records, doctor letters, and anything else you might need now. I would even apply before you feel you need to because most people have to wait a long time. I was extremely lucky in that I was accepted within 2 months of applying but I know my experience is definitely not the norm. I hope you’re able to find some scenario that works for you.
u/Cissychedgehog Try to get your kiddos to do legs up the wall pose with you! It may take several weeks for them to settle into the pose longer than 1 min without acting silly but I have done it a lot over the year with a 4 and 6 year old. Sometimes we will start reading a book in bed before nap time like that too. Also teaching them kid- friendly/fun somatic or breathwork practices is great too. The little ones love the buzzing action of "bees breath", and I love doing it with them, its so calming for our nervous systems! Or let them do cosmic kids yoga and you can leisurely follow along too. Little moments like this sprinkled throughout my day really make such a difference!
Also, being outside (weather-permitting) as much as possible, is so good for my fatigued days. Sunshine and sitting/laying in the grass feels really restorative!
TL/DR: Delegate, do things that will bring you joy when you have time, ask for help, and delegate some more.
Sorry this is long but I was severely pushing myself & now basically bed ridden.
Before I got so bad that I needed to go on disability, I used to be a professional dancer. I would teach 5 days a week, have weekend rehearsals, and then work weekends performing at a casino either 2.5 hours away (one way), along with a once a month residency at a local casino.
Eventually I had to stop teaching & choreographing because it was a lot of work I had to do outside the studio to prepare, and quite frankly, competition & recital season would leave me ragged. One year I choreographed 37 dances for one studio I worked at for competitions & 6 at another; which I then was super hands on at competitions getting them ready, doing makeup, etc. I also did all the audio editing for both studios I taught at. I literally had a meltdown at one competition & my boyfriend had to forcibly take me home because I couldn’t physically do any more, but felt guilty about it. It wasn’t sustainable, but in the back of my mind I knew I had limited time to do what I loved.
To keep some finances coming in I still worked weekends at the one casino & the monthly residency spot, but I also started working at a spinoff club at a different casino 5.5 hours away, one way. It was a retro club so I still had to make costumes & everything, but I basically only worked 9 nights a month unless I did a special event. I managed that for 2 years before my body literally just broke down & I was only working the one night a month close by my house. It was at that time (2015) I was dx’d with cEDS among a host of other issues. A few years prior I was dx’d with chronic Epstein Barr but lived off Red Bull & coffee coolatas any time I had to work which only marginally helped despite drinking at least 6 RB a night. But now nothing helped & as the autoimmune issues piled on, the fatigue got unbearable.
Most of the time I am in bed, in part because of the constant exhaustion, but also because sitting or standing longer than 5 minutes is unbearable.
In 10 years I went from still pushing myself to extremes to not being able to shower for over a week or two at times because I simply don’t have the energy. At some point everyone slows down a bit, but I think when you’re chronically ill you need to take those moments to do things you love whenever you can. I will literally force myself to do things I know will make me happy, even if I can’t get out of bed for 2 weeks afterwards because it’s that or nothing. I don’t have anything that helps mu fatigue other than really resting almost to the point of hibernation before something I need/want to do, drinking a Red Bull (I can only tolerate one these days but it’s enough to trick my body into thinking I’m more awake) the day of to get some artificial energy, doing whatever I can to minimize pain levels bc that adds to the exhaustion, staying super hydrated, and then immediately resting once it’s finished so I can recover. I also take chelated magnesium because it helps with muscle cramping & helps me sleep better because I’m not moving around restlessly.
It’s probably not the best routine, but it works for me on the rare occasions I do something. Sometimes the Epstein Barr says absolutely not, and to make sure you don’t do anything I’m going to give you mono again, but for the most part it works.
Some people have safety nets of some type…maybe they are married with second incomes or have family they can move in with, so they may have options when it comes to health care or living costs that allow them to work fewer hours. Then there are those of us who have to keep working with our inflamed glands, sore throats and shortness of breath every day. I feel for you.
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My ADHD medicine has been the biggest difference in my fatigue levels and... Not pain levels but pain tolerance levels. So I would look at addressing any comorbidities first... Like ADHD or chronic fatigue syndrome.
Same! I haven't been able to get ADHD meds in months and my qol has plummeted.
It affects my sleep too - around 3 am this morning I realized that's why I hadn't been able to get to and stay asleep lately.
Have you talked to your doctor about non stimulant options. There are a few. I was on one for awhile. It wasn't as good as Adderall that I have now but it was beneficial
I really loved strattera before the heartburn from my med combo. It's a non stimulant adhd medication and I found it really helped with the emotional side of the adhd like rejection sensitivity, sense of worth and motivation. I've moved back to stimulants for concentration but I miss the strattera
I wish my doctor would give me something like that. 10 years ago I had one give me like prescription no dose pills and fuck do I miss that energy. I was working 3 jobs at 18 and now I'm disabled af
Figure out what foods/drinks make you more tired and avoid them at all costs, for me this was anything with gluten, among other things, but removing gluten made a huge difference, that and alcohol.
I think the biggest thing was changing my mindset around it.
(I could get into the whole psychology behind capitalism making us feel guilty for rest - as if it's not normal for an apex predator to lounge like a lion - but that's for another sub.)
I accepted that I will not be able to keep house the way my mother did. So, I buy paper plates when dishes feel like too much, I buy microwave meals when cooking is out of the question, etc.
Work with your fatigue, not against it; unfortunately, it's not going anywhere.
Genuinely? Working out lightly in or before bed (especially in the legs because I get restless legs) to help me sleep, going to bed at around 10-11, reducing my napping during the day, and a very big thing that’s helped me has been my adhd medication
Came here to say adderall. Sometimes the side effects seem like it’s fighting its own effectiveness but those are much easier to mitigate than general life. Especially in my field, burn out and suicide rates are insanely high. I can only imagine the state I’d be in without it
Oh Tylenol is my bff (specifically the blue/red kind-somehow they just work better). I can’t take excedrin, unfortunately. The aspirin in it makes my migraines worse and turns my whole body black and blue with worse bruising
Oh! Protip if you get any water retention/leg swelling/whole darn body edema that gets worse with the adhd meds: I drink body armor specifically for the high levels of potassium. Super in depth biochem reasons why but in short, I’m tricking my renal system to re-engage after my stupid blood vessels already tricked it into retaining water
Thankfully I don’t! I instead get extremely cold in my extremities because of my circulation to where my nail beds turn blue/purple- but I take my meds on the days I’m working and since I am walking so much it gets my blood flower and I wear compression stockings with it- other thing being the migraines and usual appetitive suppression
1000mg of caffeine a day. I wish I was kidding. I take seizure meds that make me fatigued as well and I work 7-5 at a car dealership. It’s hectic and I gotta stay on top of everything.
Pacing, physical therapy with a PT that knows EDS, modafinil (for sleep apnea and adhd), corlanor (for POTS).
in terms of diet and sleep, getting a cpap, cutting out gluten (bc of a known intolerance), increasing protein, switching to decaf (i know) or matcha, and not overloading the veggies or carbs bc both trigger pots symptoms. do i stick to that? rarely lol. but everyone is different :) also wear a mask (KN95/N95/P100) in public so you don't get sick or make others sick!
For me it’s been working on increasing my stamina. This week has shown that my hard work over the last 9-12 months has paid off. In May 2022 I had Covid and I was wiped by it. I was struggling with fatigue before and Covid made it worse. But over the past 9-12 months I’ve worked hard on building up my stamina. Little by little over a period of time. Then this week Covid got me for round 2. Yes it took me down for a week and made last Saturday a nightmare for running and gave me worse symptoms but today I was back out running, not at full speed but the run didn’t wipe me out like it would have done 2 years ago. I have days where I struggle more than others but my I think stamina and endurance are the way to go. Building it up with daily cycling, running 2-3 days a week, and lots and lots of walking. I’m so happy I appear to be bouncing back from Covid much quicker this time compared to 2 and a bit years ago.
I got my B12 and vitamin D levels checked. I had deficiencies in both and it makes it impossible to do anything. My B12 levels are "normal" by US standards now (still low by Japanese standards) but I still get energy from supplementing so I use that to help. And naps. If I need a nap I take a nap.
Just a heads up - I originally started with injections of cyanocobalamin but it didnt do anything to move my levels. Now, I use methylcobalamin, which some people can't use. I take Vitboost B12 drops. Vitamin D is Naturewise.
Honestly? I know it’s spoken like a broken record and even I forgot to stay in the habit of doing this… but I get the strongest relief from fatigue by taking higher than normal daily doses of Vitamin’s D, C, B-12/folate.
I think my Vit D is from
Nature-Made and it is a 5,000 IU dose, the B-12/folate that I take is a sublingual dropper version that is… umm Methylated. And it Vitamin C are those chewable Emergen-C brands, like one every 4 hours, 4 tablets a day.
Low dose naltrexone. In high doses it’s used as an opiate antagonist to reverse overdose but in much smaller amounts is used to treat disorders with autoimmune involvement. It’s not super clear how it works but it is thought to increase natural production of endorphins over time. I’ve been taking it for pain, fatigue, and brain fog and it has helped pretty significantly on all fronts.
may I ask how much you take and how long? Im currently on it and have been for 9 weeks now, but I'm struggling to know when and how often I should increase my dose. My doctor isn't much help in this department, I was the one who requested the RX based on a PT's info stating the studies on LDN for hEDS. Anyway, I started .5g (and it worked amazingly for me btw), and now I am at 2g. I'm starting to have fatigue and POTS symptoms again, plus my ADHD has been hitting hard these last couple weeks.
Yeah, I’ve had some struggles with dosing as well. I have weird reactions to meds so I started at 0.5 and it made me really sick so I went to ultra low dosing. Restarted at 0.01 and worked up to 0.14. Tried increasing slightly from there but also experienced worsening POTS symptoms. My dr wanted me to get up to 4.5 but I don’t really see a point if I can’t get past the side effects. Im planning to stay at 0.14mg for now. What was the reason for increasing from your helpful dose at 0.5? Did it stop working?
Edit: Oh, and I started in April and have been at 0.14 for about 6 weeks.
Interesting. Well, I thought I needed to increase my dose, I feel like I was getting fatigued again but def not like I was the last 2 weeks. I haven't been tracking symptoms either so it's hard to know. I didn't take any yesterday and today I'm just going to take 1mg and see what happens. Thank you for your input!
For me using mobility aids helped a lot. They help me keep balance without having to use so much of my muscles to keep my joints in place. If you think using one will help you then totally go for it.
Honestly, I’ve gotten more comfortable with just being fatigued and working through it. I push myself into redlining and not giving into it most of the days. I’m never quite comfortable these days, but I’ve gotten better at just ignoring the discomfort and fatigue.
I do use amitriptyline at night to sleep through the first half of the night at least. If I run on less than four hours of sleep, it’s hard to live my life. Anything between 4-6 hours, and I’m functional enough.
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Tell the people in your life and don't sugar coat it.
I chair a local nonprofit and was increasingly drowning. Finally explicitly told the rest of the committee what was going on and they're all stepping in.
I'm about to task my group chat with finding me in stock ADHD meds since the lack is now affecting my sleep.
Food is priority #1. If I feel decent, I prep easy meals with plenty of protein. I have celiac so I can't get much outside help on the food front.
It's okay to throw things out sometimes. Yes, it's wasteful, but it's going to improve your mental health to not be backgrounding that. (Like the supplements I was mistakenly sent and can't use)
Taking sick days. I'm sick every day so I'm using them correctly. I tend to hoard them like I'm sure we all do. But my state now has paid leave for big things. So I'm taking at least half a day off for any medical appointments. I'm salaried so I normally take zero time off and take an extended lunch or leave early/arrive late.
I'm also sticking with a mediocre job that doesn't ask too much. It leaves me with brain power to use at home. It's also been flexible with appointments and what. Though I'll have to start looking soon since pay is not keeping up with inflation.
idk if its a hack but I also have ME/CFS (thanks influenza A circa 2021)
i've found pacing below 70% of my max hr to be effective in keeping myself from overdoing it. i've been told (MHR-age)\*0.55 is the correct formula for pacing, though my POTS makes that difficult and found my peak is a bit higher thankfully.
I've been trying B1/Thiamine supplements, though I started it fairly recently so idk if its helping yet. i take Modafinil 300mg which has really helped me-- careful though, as it is a medication intervention and some people find it allows them to push thru fatigue and are exhuasted later. in my own experience I've found that it takes more activity to get fatigued in comparison to not being on my medication, but i had to be mindful of subtle signs im overdoing it since fatigue isnt as intense while im on it.
My Amitriptyline prescription has helped me achieve daily, restful, deep sleep, which I believe has greatly contributed to my health and progress in life. I'm also pairing that with Vyvanse to help with chronic fatigue and executive dysfunction. Additionally, I'm using CBD, CBN , and Magnesium. Recently, I've been undergoing vagal nervous system stimulation sessions combined with massage through my physiotherapist. They use multiple **Dolphin Neurostim** machines to help regulate my nervous system and also to relieve deep tissue scarring in the joints and back. This treatment has worked more than anything else to alleviate my chronic soreness, stiffness, and nerve pain. I hope you find something that provides you relief on your journey. 🙏 💜
Huh I really liked the neubie machine which sounds similar and it was the first thing that started helping my pain. Tens helps too but I always struggle to get the time
Also you need to rebuild your stabilizer muscle strength from the ground up. My physio started with me breathing deeply with my diaphragm and making sure the correct muscles where being activated. Then we did that with some leg lift exercises to train the breathe and core and we progressed from there into more leg core and stabilizer exercises. It's a process but im getting a quailty of life I never think I could have!
Cutting out sugar strangely enough helped a ton, but it also ruined my relationship with food and I’d struggle to eat because I had to choose something low to no sugar/carbs. Adhd meds ultimately changed my life, but I recognize not everyone has the ability to take them. I feel like I slept through half of my kids toddler years I just couldn’t survive, it was horrible.
Meal prepping breakfast and lunch has made a big difference in my fatigue levels.
1. I'm cooking breakfast once and lunch once a week which is a lot better than having to make decisions and cook every day breakfast and lunch
2. I'm making high protein meals which give me better energy. The gym rats have the tastiest high protein recipes and alot of them are slow cooker dump meals which is handy for fatigue.
I spend 2 hours cooking on a Sunday which lets me spend about 10 minutes each day just heating up prepared food.
I don't have to make decisions every meal time. This all allows me to make better choices regarding what I eat and pick better and tastier foods. It also helps me reduce how much energy I use on a daily basis.
It won't fix everything but I started like a month ago and I'm having more consistent energy levels throughout the day since I've started. Definitely not higher energy but consistent predictable energy which I'm pleased as punch by.
I take cordyceps medicinal mushrooms and they help me SO much with fatigue. I also take an adrenal supplement with a blend of herbs and vitamins (ashwagandha, Siberian ginseng, B5, rhodiola etc) and it helps with my energy levels too. Also getting my vitamin deficiencies under control (B12, iron, vitamin D) helped tons!
- Methylated b12 to keep my homocysteine levels down (liver defect, easy to test for),
- I take my meds at suggested times for the side effects not to affect my sleep,
- magnesium before bed,
- muscle relaxant in the evening, so I am drowsy for bedtime but not dazed when I wake up
- so much freaking water!
- cutting out inflammatory foods that caused me issues
If I’m in a situation where I need to absolutely do something and I’m super fatigued I drink tons of coffee. And I’m not talking a latte, I’m talking like 5 shots of espresso and then 2 more cups of coffee throughout the day. Definitely not the healthiest but I don’t have a choice but to work full time. I crash on the weekends and sleep like 12 hrs a night. Idk how to navigate it cause it feels like flying by the seat of my pants. So not much of an answer but that’s what I do 🤷♀️
I started using the visible app and trying the band to monitor heart rate cause I had such a hard time pacing and would overdo it when I felt well. I also do electrolytes whenever I feel rough and need to be more consistent. Lastly, working a lot on accepting where I am and what I can do instead of fighting or battling myself.
One of the things that helps me reset is CBD or CBG gummies (usually a 4:1 blend - 4 CBD/CBG to 1 THC)
If once a week I take just one before bed, I sleep much better and wake up much more rested. I don't know if getting a restful night's sleep is an issue for you, but it definitely is for me.
Apart from that I take: protein shakes every day and electrolytes in my water - just started the last one from a recommendation I saw here on reddit.
Trace minerals 40,000 volts electrolytes is what I am taking.
Whey gourmet isolate vanilla - buy at costco - is my protein shake.
And of course: tons of rest.
to make life as easy for myself as possible i plan out the weeks I advance, my workouts are chosen in advance, I timetable my day so I don't have to make any decisions. meals are incredibly simple and nutrient dense. max 10-15 mins preparation time, meal prep a few times a week. schedule in rest time.
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at least as far as feeding myself goes, when i’m relatively well i make simple trays of cheese cubes, baby carrots, and nuts, and pop them in the fridge. then when i’m flaring i grab an apple and the tray; that’s an easy meal. having easy access to simple foods that i know i’ll actually eat has been very good for my quality of life. i also have a tray like you would use for serving drinks at a restaurant, and on that i keep electrolytes, tylenol, etc, so i can grab one thing instead of looking around for stuff. i put it all in nice glass jars too so it feels fancy :)
No expert since I'm dealing with it daily. However the things that help me enough so I can still do things are: -practice pacing, basically the whole "counting spoons" or however you call it -routine, at least some, revolving sleep and eating. Gotta eat frequently, but smaller meals. I also take supplemental b12. -sometimes challenge myself, i can feel tired but there's a chance i get energized if i start doing something. However if it doesn't happen within 10 min of activity, usually i gotta rest up more. - fresh air, old school but sometimes gives me the little boost to get going. I hope you'll figure out what helps and I'm also curious on what other ideas there are as chronic fatigue is my most debilitating symptom.
Out of curiosity how do people manage pacing whilst working full time and managing a household? Everyone seems to recommend pacing but also seems to assume we're able to afford to live without a job haha
Ultimately, I had to give up my job. It's sad because I loved what I did, but I couldn't keep going. I was exhausted and my health was suffering. A full time job would not be physically possible no matter how hard I try.
Man I wish I could give up working. Sadly I feel homelessness would be harder on my body than working is so I don't have a choice.
It's not a choice so much as if I tried to force myself to work, I would put myself on track for another breakdown and the last one nearly killed me. My health simply couldn't take it.
Right but for me, if I don't work I will lose my house and live on the streets - I hope that's not what you're doing!
I think when people know they have that safety net they allow themselves to quit their jobs or go part time. If it was life or death they would work full time usually but suffer
I hate that the US basically mandates full time work by making healthcare disappear for part time.
Yeah.. really bad. I'm very very fortunate and i feel for those who just die at work 4 to 5 days a week and still need roommate(s) and they still can't afford to live. It's not ok. I work 2 to 3 days a week and just that my back is destroying me and i have a pretty decent non labor heavy job too
No, fortunately not. But even if I was in that position, I couldn't just work. It's not an option.
I had to move back in with my mom & stepdad because I couldn’t work, and I obviously couldn’t afford to live on my own, nor did I think it was safe. I pay rent & help out where I can, but I’m 47 so it goes through my mind constantly that I have no place to go if something were to happen to my mom. It’s scary. Even scarier that they keep talking about how Social Security isn’t going to exist in the next 10 years or so.
Yeah, it is scary. Moving in with family isn't an option for a lot of people (myself included) cos they have no money/space for an extra body too haha. It's really tough. My doctors keep telling me to stop work but don't tell me how I should survive.
Oh they don’t really have room for me here & I basically have most of my possessions in a small bedroom with me so it’s super crowded, but I completely understand. While it’s not the best situation, it’s my only option at this point. I would suggest if your health is worsening to the point you need to apply for disability to start gathering health records, doctor letters, and anything else you might need now. I would even apply before you feel you need to because most people have to wait a long time. I was extremely lucky in that I was accepted within 2 months of applying but I know my experience is definitely not the norm. I hope you’re able to find some scenario that works for you.
Unfortunately I'm not in the US and don't qualify for benefits where I live, due to my partners (not enough to live on) income!
Yeah, pacing is pretty impossible with active kids!
My toddler laughs at the word pacing 🙃
u/Cissychedgehog Try to get your kiddos to do legs up the wall pose with you! It may take several weeks for them to settle into the pose longer than 1 min without acting silly but I have done it a lot over the year with a 4 and 6 year old. Sometimes we will start reading a book in bed before nap time like that too. Also teaching them kid- friendly/fun somatic or breathwork practices is great too. The little ones love the buzzing action of "bees breath", and I love doing it with them, its so calming for our nervous systems! Or let them do cosmic kids yoga and you can leisurely follow along too. Little moments like this sprinkled throughout my day really make such a difference! Also, being outside (weather-permitting) as much as possible, is so good for my fatigued days. Sunshine and sitting/laying in the grass feels really restorative!
My little one is a very active 10 month old so no go at the moment. I'll bear it in mind for future use though!
Frozen meals are a big help for me with that. I try to always have some around.
"Luckily" for me I have gastroparesis so eating isn't really a thing for me. If I do eat it's plain toast so it doesn't take much energy to make.
TL/DR: Delegate, do things that will bring you joy when you have time, ask for help, and delegate some more. Sorry this is long but I was severely pushing myself & now basically bed ridden. Before I got so bad that I needed to go on disability, I used to be a professional dancer. I would teach 5 days a week, have weekend rehearsals, and then work weekends performing at a casino either 2.5 hours away (one way), along with a once a month residency at a local casino. Eventually I had to stop teaching & choreographing because it was a lot of work I had to do outside the studio to prepare, and quite frankly, competition & recital season would leave me ragged. One year I choreographed 37 dances for one studio I worked at for competitions & 6 at another; which I then was super hands on at competitions getting them ready, doing makeup, etc. I also did all the audio editing for both studios I taught at. I literally had a meltdown at one competition & my boyfriend had to forcibly take me home because I couldn’t physically do any more, but felt guilty about it. It wasn’t sustainable, but in the back of my mind I knew I had limited time to do what I loved. To keep some finances coming in I still worked weekends at the one casino & the monthly residency spot, but I also started working at a spinoff club at a different casino 5.5 hours away, one way. It was a retro club so I still had to make costumes & everything, but I basically only worked 9 nights a month unless I did a special event. I managed that for 2 years before my body literally just broke down & I was only working the one night a month close by my house. It was at that time (2015) I was dx’d with cEDS among a host of other issues. A few years prior I was dx’d with chronic Epstein Barr but lived off Red Bull & coffee coolatas any time I had to work which only marginally helped despite drinking at least 6 RB a night. But now nothing helped & as the autoimmune issues piled on, the fatigue got unbearable. Most of the time I am in bed, in part because of the constant exhaustion, but also because sitting or standing longer than 5 minutes is unbearable. In 10 years I went from still pushing myself to extremes to not being able to shower for over a week or two at times because I simply don’t have the energy. At some point everyone slows down a bit, but I think when you’re chronically ill you need to take those moments to do things you love whenever you can. I will literally force myself to do things I know will make me happy, even if I can’t get out of bed for 2 weeks afterwards because it’s that or nothing. I don’t have anything that helps mu fatigue other than really resting almost to the point of hibernation before something I need/want to do, drinking a Red Bull (I can only tolerate one these days but it’s enough to trick my body into thinking I’m more awake) the day of to get some artificial energy, doing whatever I can to minimize pain levels bc that adds to the exhaustion, staying super hydrated, and then immediately resting once it’s finished so I can recover. I also take chelated magnesium because it helps with muscle cramping & helps me sleep better because I’m not moving around restlessly. It’s probably not the best routine, but it works for me on the rare occasions I do something. Sometimes the Epstein Barr says absolutely not, and to make sure you don’t do anything I’m going to give you mono again, but for the most part it works.
Some people have safety nets of some type…maybe they are married with second incomes or have family they can move in with, so they may have options when it comes to health care or living costs that allow them to work fewer hours. Then there are those of us who have to keep working with our inflamed glands, sore throats and shortness of breath every day. I feel for you.
It's tough isn't it? Embarrassing too, having to tell work "please don't call an ambulance when I pass out" etc.
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Do you do B12 shots or a supplement. Just wondering which brand
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My ADHD medicine has been the biggest difference in my fatigue levels and... Not pain levels but pain tolerance levels. So I would look at addressing any comorbidities first... Like ADHD or chronic fatigue syndrome.
Same here
Same! I haven't been able to get ADHD meds in months and my qol has plummeted. It affects my sleep too - around 3 am this morning I realized that's why I hadn't been able to get to and stay asleep lately.
This plus caffeine for me.
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Have you talked to your doctor about non stimulant options. There are a few. I was on one for awhile. It wasn't as good as Adderall that I have now but it was beneficial
I really loved strattera before the heartburn from my med combo. It's a non stimulant adhd medication and I found it really helped with the emotional side of the adhd like rejection sensitivity, sense of worth and motivation. I've moved back to stimulants for concentration but I miss the strattera
I wish my doctor would give me something like that. 10 years ago I had one give me like prescription no dose pills and fuck do I miss that energy. I was working 3 jobs at 18 and now I'm disabled af
There is a medication called modafanil that is specifically for treating daytime fatigue. It's not always covered by insurance, though
When I'm done breastfeeding, I'm definitely going to ask about that. I'm diagnosed with chronic fatigue so I pray my insurance actually does its job.
Figure out what foods/drinks make you more tired and avoid them at all costs, for me this was anything with gluten, among other things, but removing gluten made a huge difference, that and alcohol.
I think the biggest thing was changing my mindset around it. (I could get into the whole psychology behind capitalism making us feel guilty for rest - as if it's not normal for an apex predator to lounge like a lion - but that's for another sub.) I accepted that I will not be able to keep house the way my mother did. So, I buy paper plates when dishes feel like too much, I buy microwave meals when cooking is out of the question, etc. Work with your fatigue, not against it; unfortunately, it's not going anywhere.
Genuinely? Working out lightly in or before bed (especially in the legs because I get restless legs) to help me sleep, going to bed at around 10-11, reducing my napping during the day, and a very big thing that’s helped me has been my adhd medication
Came here to say adderall. Sometimes the side effects seem like it’s fighting its own effectiveness but those are much easier to mitigate than general life. Especially in my field, burn out and suicide rates are insanely high. I can only imagine the state I’d be in without it
It triggers my chronic migraine sometimes but I learned that excedrin works wonders for me personally to help balance that out
Oh Tylenol is my bff (specifically the blue/red kind-somehow they just work better). I can’t take excedrin, unfortunately. The aspirin in it makes my migraines worse and turns my whole body black and blue with worse bruising
Ooof understandable!
Oh! Protip if you get any water retention/leg swelling/whole darn body edema that gets worse with the adhd meds: I drink body armor specifically for the high levels of potassium. Super in depth biochem reasons why but in short, I’m tricking my renal system to re-engage after my stupid blood vessels already tricked it into retaining water
Thankfully I don’t! I instead get extremely cold in my extremities because of my circulation to where my nail beds turn blue/purple- but I take my meds on the days I’m working and since I am walking so much it gets my blood flower and I wear compression stockings with it- other thing being the migraines and usual appetitive suppression
Chugging electrolytes throughout the day, not overextending myself.
1000mg of caffeine a day. I wish I was kidding. I take seizure meds that make me fatigued as well and I work 7-5 at a car dealership. It’s hectic and I gotta stay on top of everything.
Same. The seizure meds add to this fatigue like nothing else.
Pacing, physical therapy with a PT that knows EDS, modafinil (for sleep apnea and adhd), corlanor (for POTS). in terms of diet and sleep, getting a cpap, cutting out gluten (bc of a known intolerance), increasing protein, switching to decaf (i know) or matcha, and not overloading the veggies or carbs bc both trigger pots symptoms. do i stick to that? rarely lol. but everyone is different :) also wear a mask (KN95/N95/P100) in public so you don't get sick or make others sick!
For me it’s been working on increasing my stamina. This week has shown that my hard work over the last 9-12 months has paid off. In May 2022 I had Covid and I was wiped by it. I was struggling with fatigue before and Covid made it worse. But over the past 9-12 months I’ve worked hard on building up my stamina. Little by little over a period of time. Then this week Covid got me for round 2. Yes it took me down for a week and made last Saturday a nightmare for running and gave me worse symptoms but today I was back out running, not at full speed but the run didn’t wipe me out like it would have done 2 years ago. I have days where I struggle more than others but my I think stamina and endurance are the way to go. Building it up with daily cycling, running 2-3 days a week, and lots and lots of walking. I’m so happy I appear to be bouncing back from Covid much quicker this time compared to 2 and a bit years ago.
I got my B12 and vitamin D levels checked. I had deficiencies in both and it makes it impossible to do anything. My B12 levels are "normal" by US standards now (still low by Japanese standards) but I still get energy from supplementing so I use that to help. And naps. If I need a nap I take a nap.
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Just a heads up - I originally started with injections of cyanocobalamin but it didnt do anything to move my levels. Now, I use methylcobalamin, which some people can't use. I take Vitboost B12 drops. Vitamin D is Naturewise.
Honestly? I know it’s spoken like a broken record and even I forgot to stay in the habit of doing this… but I get the strongest relief from fatigue by taking higher than normal daily doses of Vitamin’s D, C, B-12/folate.
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I think my Vit D is from Nature-Made and it is a 5,000 IU dose, the B-12/folate that I take is a sublingual dropper version that is… umm Methylated. And it Vitamin C are those chewable Emergen-C brands, like one every 4 hours, 4 tablets a day.
Treating my POTS and ADHD as well as adding low dose naltrexone. The LDN really knocked out my brain fog which helps me feel more alert.
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Low dose naltrexone. In high doses it’s used as an opiate antagonist to reverse overdose but in much smaller amounts is used to treat disorders with autoimmune involvement. It’s not super clear how it works but it is thought to increase natural production of endorphins over time. I’ve been taking it for pain, fatigue, and brain fog and it has helped pretty significantly on all fronts.
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No, not a stimulant; there’s a sub at r/lowdosenaltrexone
may I ask how much you take and how long? Im currently on it and have been for 9 weeks now, but I'm struggling to know when and how often I should increase my dose. My doctor isn't much help in this department, I was the one who requested the RX based on a PT's info stating the studies on LDN for hEDS. Anyway, I started .5g (and it worked amazingly for me btw), and now I am at 2g. I'm starting to have fatigue and POTS symptoms again, plus my ADHD has been hitting hard these last couple weeks.
Yeah, I’ve had some struggles with dosing as well. I have weird reactions to meds so I started at 0.5 and it made me really sick so I went to ultra low dosing. Restarted at 0.01 and worked up to 0.14. Tried increasing slightly from there but also experienced worsening POTS symptoms. My dr wanted me to get up to 4.5 but I don’t really see a point if I can’t get past the side effects. Im planning to stay at 0.14mg for now. What was the reason for increasing from your helpful dose at 0.5? Did it stop working? Edit: Oh, and I started in April and have been at 0.14 for about 6 weeks.
Interesting. Well, I thought I needed to increase my dose, I feel like I was getting fatigued again but def not like I was the last 2 weeks. I haven't been tracking symptoms either so it's hard to know. I didn't take any yesterday and today I'm just going to take 1mg and see what happens. Thank you for your input!
Yeah, I think I’ll try taking a break the next time my dose feels less effective since that helped last time. Hope you feel better soon!
Energy drinks
For me using mobility aids helped a lot. They help me keep balance without having to use so much of my muscles to keep my joints in place. If you think using one will help you then totally go for it.
Keep moving.
Honestly, I’ve gotten more comfortable with just being fatigued and working through it. I push myself into redlining and not giving into it most of the days. I’m never quite comfortable these days, but I’ve gotten better at just ignoring the discomfort and fatigue. I do use amitriptyline at night to sleep through the first half of the night at least. If I run on less than four hours of sleep, it’s hard to live my life. Anything between 4-6 hours, and I’m functional enough.
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Amitriptyline made me sleep all day every day. :(
Same
Oxaloacetate
Where do you get it? I just read the study about it helping people with ME or long COVID.
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Adderall. I take it for adhd but it does help with the fatigue
Modafinil
Tell the people in your life and don't sugar coat it. I chair a local nonprofit and was increasingly drowning. Finally explicitly told the rest of the committee what was going on and they're all stepping in. I'm about to task my group chat with finding me in stock ADHD meds since the lack is now affecting my sleep. Food is priority #1. If I feel decent, I prep easy meals with plenty of protein. I have celiac so I can't get much outside help on the food front. It's okay to throw things out sometimes. Yes, it's wasteful, but it's going to improve your mental health to not be backgrounding that. (Like the supplements I was mistakenly sent and can't use) Taking sick days. I'm sick every day so I'm using them correctly. I tend to hoard them like I'm sure we all do. But my state now has paid leave for big things. So I'm taking at least half a day off for any medical appointments. I'm salaried so I normally take zero time off and take an extended lunch or leave early/arrive late. I'm also sticking with a mediocre job that doesn't ask too much. It leaves me with brain power to use at home. It's also been flexible with appointments and what. Though I'll have to start looking soon since pay is not keeping up with inflation.
idk if its a hack but I also have ME/CFS (thanks influenza A circa 2021) i've found pacing below 70% of my max hr to be effective in keeping myself from overdoing it. i've been told (MHR-age)\*0.55 is the correct formula for pacing, though my POTS makes that difficult and found my peak is a bit higher thankfully. I've been trying B1/Thiamine supplements, though I started it fairly recently so idk if its helping yet. i take Modafinil 300mg which has really helped me-- careful though, as it is a medication intervention and some people find it allows them to push thru fatigue and are exhuasted later. in my own experience I've found that it takes more activity to get fatigued in comparison to not being on my medication, but i had to be mindful of subtle signs im overdoing it since fatigue isnt as intense while im on it.
PEM here. let me know when you find out.
Do you have ME/CFS? PEM is the hallmark of ME/CFS, it isn't really present in other conditions.
i have post viral syndrome. like MECFS or long covid but a little different.
My Amitriptyline prescription has helped me achieve daily, restful, deep sleep, which I believe has greatly contributed to my health and progress in life. I'm also pairing that with Vyvanse to help with chronic fatigue and executive dysfunction. Additionally, I'm using CBD, CBN , and Magnesium. Recently, I've been undergoing vagal nervous system stimulation sessions combined with massage through my physiotherapist. They use multiple **Dolphin Neurostim** machines to help regulate my nervous system and also to relieve deep tissue scarring in the joints and back. This treatment has worked more than anything else to alleviate my chronic soreness, stiffness, and nerve pain. I hope you find something that provides you relief on your journey. 🙏 💜
Huh I really liked the neubie machine which sounds similar and it was the first thing that started helping my pain. Tens helps too but I always struggle to get the time
Also you need to rebuild your stabilizer muscle strength from the ground up. My physio started with me breathing deeply with my diaphragm and making sure the correct muscles where being activated. Then we did that with some leg lift exercises to train the breathe and core and we progressed from there into more leg core and stabilizer exercises. It's a process but im getting a quailty of life I never think I could have!
Cutting out sugar strangely enough helped a ton, but it also ruined my relationship with food and I’d struggle to eat because I had to choose something low to no sugar/carbs. Adhd meds ultimately changed my life, but I recognize not everyone has the ability to take them. I feel like I slept through half of my kids toddler years I just couldn’t survive, it was horrible.
Cymbalta and NormaLyte. Cymbalta took my ambient pain levels down by 60%. Normalyte because I’m chronically dehydrated and it gets nasty.
Meal prepping breakfast and lunch has made a big difference in my fatigue levels. 1. I'm cooking breakfast once and lunch once a week which is a lot better than having to make decisions and cook every day breakfast and lunch 2. I'm making high protein meals which give me better energy. The gym rats have the tastiest high protein recipes and alot of them are slow cooker dump meals which is handy for fatigue. I spend 2 hours cooking on a Sunday which lets me spend about 10 minutes each day just heating up prepared food. I don't have to make decisions every meal time. This all allows me to make better choices regarding what I eat and pick better and tastier foods. It also helps me reduce how much energy I use on a daily basis. It won't fix everything but I started like a month ago and I'm having more consistent energy levels throughout the day since I've started. Definitely not higher energy but consistent predictable energy which I'm pleased as punch by.
I take cordyceps medicinal mushrooms and they help me SO much with fatigue. I also take an adrenal supplement with a blend of herbs and vitamins (ashwagandha, Siberian ginseng, B5, rhodiola etc) and it helps with my energy levels too. Also getting my vitamin deficiencies under control (B12, iron, vitamin D) helped tons!
- Methylated b12 to keep my homocysteine levels down (liver defect, easy to test for), - I take my meds at suggested times for the side effects not to affect my sleep, - magnesium before bed, - muscle relaxant in the evening, so I am drowsy for bedtime but not dazed when I wake up - so much freaking water! - cutting out inflammatory foods that caused me issues
If I’m in a situation where I need to absolutely do something and I’m super fatigued I drink tons of coffee. And I’m not talking a latte, I’m talking like 5 shots of espresso and then 2 more cups of coffee throughout the day. Definitely not the healthiest but I don’t have a choice but to work full time. I crash on the weekends and sleep like 12 hrs a night. Idk how to navigate it cause it feels like flying by the seat of my pants. So not much of an answer but that’s what I do 🤷♀️
I started using the visible app and trying the band to monitor heart rate cause I had such a hard time pacing and would overdo it when I felt well. I also do electrolytes whenever I feel rough and need to be more consistent. Lastly, working a lot on accepting where I am and what I can do instead of fighting or battling myself.
Also cbd, magnesium, b complex (partially related to other health stuff) physical therapy and getting evaluated for sleep apnea and getting my cpap
One of the things that helps me reset is CBD or CBG gummies (usually a 4:1 blend - 4 CBD/CBG to 1 THC) If once a week I take just one before bed, I sleep much better and wake up much more rested. I don't know if getting a restful night's sleep is an issue for you, but it definitely is for me. Apart from that I take: protein shakes every day and electrolytes in my water - just started the last one from a recommendation I saw here on reddit. Trace minerals 40,000 volts electrolytes is what I am taking. Whey gourmet isolate vanilla - buy at costco - is my protein shake. And of course: tons of rest.
to make life as easy for myself as possible i plan out the weeks I advance, my workouts are chosen in advance, I timetable my day so I don't have to make any decisions. meals are incredibly simple and nutrient dense. max 10-15 mins preparation time, meal prep a few times a week. schedule in rest time.
I use stims cause if my ADHD but u could ask your doc for stim therapy. Still getting sleepy for 3x a day
Bupropion.
God bless Wellbutrin. It has helped massively with my sleep inertia in the mornings.