I got this from this tweet https://twitter.com/StenHelmfrid/status/1034715305807933441
It seems the word is spreading just how bad PACE Trial really is even outside of ME/CFS circles
I hope his book becomes a best seller and every doctor and researcher reads it :)
It's a crock. Just another scam like amygdala retraining, mickel therapy, reverse therapy, EFT, etc. If you are misdiagnosed and actually have something like situational depression it might help you, but if you truly have ME there is no chance this will do anything for you.
You can read a bit about what it entails here.
GET A BIDET ATTACHMENT!! I'm putting this in all caps because it changed my life. Pooping used to also be really tiring for me. I think we discount how much effort goes into wiping especially if you have to do it a lot. A bidet solves this. It sprays most of the poop off and you just wipe a few times to dry off. Way easier. The bidet and also making sure you take breaks between the different steps of pooping made pooping much easier for me.
Here's a $35 dollar bidet attachment on Amazon that works great:
It's a bit weird, because if you search for titles related to Unrest, you don't get Unrest. But if you specifically search for it, you get it.
FWIW, here's a direct link to it: https://www.netflix.com/watch/80168300
Have you tried breaking it up into really short increments? It’s hard to stop yourself from powering through once you’ve started, but I can sometimes actually get more done without getting sick if I just do, say, two minutes at a time. Wash one dish and then go rest. It’s frustrating and “inefficient” but might let you get more done without hurting yourself. Pushing through in one big go is going to be counterproductive because you’ll be worse for an unknown amount of time afterwards, which means everything will just get dirty even faster afterwards. It’s also dangerous for you.
Are there any labor saving devices that you can afford? Robot vacuums are amazing. I see cheap ones listed on Facebook Marketplace pretty often when people upgrade. Disposable plates and utensils might help, even if you just use them temporarily while you slowly tackle the other household mess that’s built up. There are some good cleaning techniques out there that save a lot of effort, so if you’re interested there’s good resources on youtube and Instagram. Don Aslett is an author who has a series of books on cleaning efficiently. Here’s one, if you’re interested in that. Some of his techniques are counterproductive for CFS, saving more time than energy, but I use some of his tips and find them helpful.
This one is a little different, but would your grandparents allow you to get a different roommate? If they will, maybe you could find one who would be willing to do the household chores in exchange for lowered rent. My husband did this for a housemate in college (he was just a slob, not sick) and it was a win-win for them both.
When I'm feeling my lowest, thinking about all this horribly misunderstood disease has ripped away from me, I remember one thing: every day that I get through from start to finish is a success in itself. Nothing else in my life matters beyond that. Even if I lie still all day because the fatigue and pain is too much, I lived that day to the best of my ability, and nothing can take that from me. Especially not CFS.
I don't care if people disbelieve me, because I know there is something wrong within my body that current medical science does not understand yet. You know it, too. Someday someone will figure it out, and there will be a cure. It might be in our lifetime, it might not be. I'm going to hang on as long as I possibly can to see if I can be around when that day comes.
Until that day comes, stick around with us here. We understand. There are good days and bad days. You're currently going through a lot of bad days. But it can get better. There are ways to cope that have helped me, and maybe they will help you. I'd be happy to suggest things, and I'm sure others here would as well.
One of the best books I've read that has helped me come to grips with this disease is "Man's Search for Meaning" by Viktor Frankl. The two most powerful quotes from it that still help me are below.
“But there was no need to be ashamed of tears, for tears bore witness that a man had the greatest of courage, the courage to suffer.”
“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
― Viktor E. Frankl, Man's Search for Meaning
We already have the calcium intake, it just isn't getting into the cells. Supplementing when the body already have enough can cause troubles: https://www.mayoclinic.org/diseases-conditions/hypercalcemia/symptoms-causes/syc-20355523
I have brain fog often and music stuck in my head a lot. I have this music i got on Amazon for sleep that doesn’t get stuck in my head and will make music that is stuck in my head stop. Maybe it’d help you?
EDIT: Since link doesn’t work, it’s “Delta Sleep 2.0” by Dr. Jeffrey Thompson
It is really important to read from scientific sources, from people who have a good understanding of it, and also to just trust that the FDA and your doctors would find other ways to diagnosis if the risk of cancer was high (like others have explained, it really isn't. )
Here is an article from Mayo Clinic: https://www.mayoclinic.org/tests-procedures/ct-scan/expert-answers/ct-scans/faq-20057860
The increase risk is not even measurable it is so low. So when you are in pain and they can't explain why it is way safer for them to scan you and find the cause than to send you home, or open you up with surgery.
Also... if you already have CFS you are already sick with a very disabling disease. Why worry about others? People that have had both have said CFS was way worse than cancer. And some people with cancer and CFS recovered from both when treated for the cancer (which is why the Rituximab trail started)
Over the counter pain pills like Advil and Tylenol can’t help nerve pain, they aren’t designed to. You’d need an entire different class of pain meds that are prescription only for that. You’re just going to overdose if you don’t stick to the daily limit on those.
That said, have you tried heat or ice, or topical pain killers? Those would be your best bet without seeing a doctor. The link below is my favorite pain cream for nerve pain. Another option is a topical THC and CBD. Just CBD won’t help it.
You Plus Relief | All Natural... https://www.amazon.com/dp/B01GKOKC4I?ref=ppx_pop_mob_ap_share
Have you read Classic Pacing? It's a book I got awhile ago but only got to reading it recently when one of my doctors suggested to do more strict pacing along with taking midodrine (which tends to mask my symptoms) so I could build up activity to eventually be able to exercise again -- so I was in the same boat as you with immediate suspicion, even though the doctor is very up to date and knowledgeable about ME/CFS.
The book's been really helpful to settle my worries about increasing activity, since it goes into talking about warning signs and how often/how much to increase each time. Also reframing how we view exercise; instead of going to the gym, for an ME patient like us, exercise could be one stretch we can do daily, or a very short session of progressive muscle relaxation (which tenses the muscles and thus uses them).
Generally, they say increase by 10% each time, so it's not a huge jump. So maybe instead of doing three walks, you just lengthen one of your current walks by 10% (e.g. if you walk for 10 minutes, you'd increase by 1 minute). And when you're first starting out, only increase in that one area and then wait ~3 weeks to (1) make sure you're not increasing too fast and (2) to get your body more used to it. Which yeah, I know, sounds a little like GET, but GET is a strict schedule, while pacing you really have to go by how your body is doing and make sure to go slowly. And, because the increases are such small amounts, it ideally shouldn't cause any crashes, and the moment symptoms start to kick in you can put on the brakes and go back to the level you were at before that increase.
There's a lot more information in the book, so I highly recommend reading it. The chapters are all relatively short and clear, and each one has a bullet point summary of the main points, so it's really easy to read.
Yes I definitely get muscle aches in my legs. I also get different (joint and nerve) that all feel v different. The muscle aches I’ve found are helped by topical cannabis lotions or rubs (if it’s legal in your area) and also I use this lotion below. It helps a lot. Sometimes advil or Tylenol helps but only if it’s on the milder side. CBD gummies help as well. When they’re mild they just feel achy like the flu but sometimes they’ll get bad enough I can’t stand up to get to the bathroom.
You Plus Relief | All Natural Pain... https://www.amazon.com/dp/B01GKOKC4I?ref=yo_pop_ma_swf
I use the app trello as a to do list. It's a digital desktop/mobile bulletin board. You create "notecards" to do items or projects, and you can keep notes, checklists, links, etc., on the card. It can link to a calendar if you need to set reminders, and even give other people access. Mostly I use this for projects, and for little day to day stuff to remember I use a good old spiral notebook and pen.
One thing as for monitors; have you tried using a 144hz before? Anecdotal, but since i've been using one, i get less eye strain and headaches, could be worth a try. Several people i know find that they get less headaches in general when using 100/120/144hz etc.
Also, maybe try using a screen filter such as redshift, you might find that lessening blue light will stop many headache related issues, especially in low light.
My very favorite for gentle yoga is Zyrka Landjwit's Gentle Yoga video. You can read more on Amazon and here's a short Youtube excerpt. She has a wonderfully soothing voice. :)
I like that her DVD has six routines that vary in time and difficulty. It took me a few months before I was ready to leave the "easiest" one, fwiw. I've fallen out of consistent practice and should really push myself back into it, as it really did help... the only time I've regretted it is when I overdo it (got too ambitious and tried a higher level before I had the stamina). The gentlest level never provoked that over-exertion feeling, though.
There are also plenty of free yoga resources online. /r/yoga could probably point you in the right direction with their FAQs. Look for "yin" yoga.
Definitely worth looking into mast cell and histamine issues if Zyrtec helps you. Have a read of this https://www.amazon.com/Never-Bet-Against-Occam-Activation/dp/0997319615 and check out his YT video if you want to learn about MC disorders.
I don't have the energy to read everyone's responses just now so I hope you'll excuse me if this is redundant.
I recommend experimenting with sensations. I find this illness is a lot more influenced by sensory perceptions than I expected. I feel much better in low light, to the point where I now wear sunglasses on the bus or in many shops due to the painful fluorescent light. Soft clothes (warm slippers, for instance!), soft bed linens (mine are flannel for winter), even something as simple as a loofah in the bath. I just discovered that and it's too scratchy but leaves a nice feeling afterwards.
Such small things can make a huge difference when the main thing you're feeling is 'awful.' I also like certain sounds and smells. Experiment and find what soothes you. Think indulgence, comfort, soft pink clouds.
Have you tried the inflatable donut? They're for hemorrhoid sufferers, but work great for sore tailbones. Available at some drugstores and online.
Here's one on Amazon: https://www.amazon.com/Dr-Fredericks-Original-Donut-Cushion/dp/B00T3TUXTW/ref=sr_1_1_sspa?dchild=1&keywords=inflatable+donut+pillow&qid=1623525340&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUFDTjYxM0xXVkhQT1cmZW5jcnlwdGVkSWQ9QTA2MTI2MzIxSUZGRkxWTkFOQ0FKJmVuY3J5cHRlZEFkSWQ9QTAzODk4MDAxMFhIN0dNQzBWVlBSJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==
It sucks. Body temperature problems have been a challenge for me. I got a heated foot bath, which really helped. If you put hot water in a bucket and soak your feet in that, it's nice, but the water will cool off fairly quickly. There are good and fairly inexpensive (~$80 USD) foot baths on amazon that will heat the water and keep it at a nice temperature. Here's one for $68 that looks similar to the one I got a few years back: https://www.amazon.com/TENKER-Massager-Heating-Rolling-Temperature/dp/B07HCBGLFC
I've used socks and heating pads, but the foot bath was the most effective. I hope you can find some relief.
Some form of dysautonomia perhaps?
As far as the anxiety, since you can't tolerate meds, try meditation or relaxation exercises. A great book on the subject is Full Catastrophe Living. You might find a program for it at your local hospital. It's not a quick fix, it will take weeks of practice, but it's very helpful.
/r/meditation is another place to look. On YouTube if you search for "yoga nidra" you will find lots of relaxation videos. The other advantage of meditation is that if you have trouble sleeping at night it can help you get the rest you need.
You might be able to tolerate some nootropics for your anxiety:
• Take 300-600mg Ashwagandha root extract standardized to ~5% withanolides and 200mg L-theanine in the morning
• Take more L-theanine as needed for extra relaxation and focus
• Take 200-400mg of magnesium citrate before bed
I have a light (and sound) sensitivity as well. Being somewhere bright truly drains me.
A few things Ive found that helps are:
1) ALWAYS wear sunglasses outside, regardless if its sunny or not.
2) Light every room with indirect lighting. For example, instead of turning on the main light in a room, turn on a small lamp in the corner of the room you are not facing
3) Close most shades and only have certain ones partially open, so that enough light gets in during the day that you dont need to turn on lights, but not so much that it drains you (it takes a while to figure this out). Edit: If your shades let in too much light and want them to act like blackout shades, you can hang a doubled over sheet or blanket over the window and that will help cut out more of the light =).
4) Flickering light is REALLY exhausting to be around. so no candles and no light/fan combinations, since the fan causes the light to look pulsating, thus making it harder to be around
5) Use blue light filters whenever using screens. This can be achieved by using certain yellow-tinted glasses (Like Gunnars https://gunnar.com/ , but there are cheaper versions out there). Another way is to use a program like f.lux (https://justgetflux.com/) on your computer which automatically removes some of the blue light.
I hope this helps =)
Librivox has free audiobooks of older books that are out of copyright - but they are voiced by volunteers so it can be hit and miss as to how good they are.
Youtube often has audiobooks, but if I find one I like I usually download it as some are taken down due to copyright issues before I've finished listening to it. I realise not everyone wants to do this but I use it to preview books before I buy them from Audible.
Audible has some great introductory offers, then when you cancel after the offer you can still listen to the books you bought. Later on, to lure you back, they offer you another deal. I get more books then cancel again. Sometimes when you cancel they'll offer another free or discounted month, which means another book. I buy ones that I really liked from youtube and want to listen to again. If you don't like a book you buy from them, they have a great return policy.
There is also Scribd which is setting itself up as an alternative to Audible, but I have no experience with that.
As to which books to choose visit r/audiobooks for some good recommendations. Or go to goodreads.com - they have lists of "50 best sci-fi books" etc, and pick some things you think sound good and try them out. You may find an author you really like - try more of their books. You may find an audiobook narrator you like - try more that they have read. For instance, I really like Scott Brick's narration (some people hate him), I'll listen to almost anything he reads. What films or TV series do you like? Were they based on a book? Maybe you'd like the audiobook. Or do you prefer non-fiction? There are plenty of books of all sorts in audiobook-land. You are sure to find something that suits you.
I listen to audiobooks too. Reading is sometimes too much for me but listening is usually ok. There are lots on youtube, and I take advantage of audible deals, then cancel when the deal is over, you can still listen to the books you have even if you are no longer subscribed. There is librivox too, which is free but books are read by volunteers and the quality can be hit or miss.
Hey, just look at their website. They recommended GET and CBT. Snake oil selling charlatans they are.
This was definitely an issue for me! Before I realized I was getting sick I kept telling my husband I was having a torpor attack like a sugar glider (sugar gliders are incredibly cute marsupials whose bodies just kind of shut down when it gets too cold out). It turns out recent research by Dr. Naviaux suggests ME/CFS might be similar to dauer or torpor seen in other animals.
I used to have a heating mat I bought at a Korean grocery store that was sooooo nice when I felt cold. It felt so comforting to have heat radiating along my back while I was covered in blankets. I also bought a radiant oil space heater to help boost the temperature in my bedroom. It doesn't dry out the air like a space heater that blows air.
How do you feel in saunas? For me, using a sauna seems to help me recover from crashes faster. It also feels really good to just bask in the heat. It's like my body can relax and quit putting all of that effort into keeping warm.
Classic Pacing. It's been really helpful to learn how to effectively pace, and how to both become stable (ie not crashing as much) and how to eventually be able to build up activity to build up more quality of life.
When I was a kid I read this book https://www.amazon.com/Big-Ball-String-Beginner-Books/dp/0394800052
Bedbound kid uses a ball of string to make connections to all the toys in his room so he can do things.
Little did I know this would become my life.
Things to consider are:
Note that a lot of quiet activities are already in the current FAQ. We asked everybody here to contribute to that. If people have even more suggestions that would be wonderful.
We also have a FAQ on hygiene, some of those would be suitable for the bedbound. I was glad to have a supply of baby wipes on hand when I got flu.
Yes. Showers and baths are a crash trigger for CFS.
There's this one (has a free trial, unlike the few others I've seen): https://play.google.com/store/apps/details?id=air.com.mecfsdiary.meDiaryTrial
Bit fiddly, but it does seem to track everything necessary.
Oh yeah, that CBT is bullshit. It's a bastardization of proper CBT and it will not help with anxiety. It's one thing to acknowledge a mind body connection and another to teach patients they are not sick. The second is medical abuse in my opinion.
There is another form of CBT that is very effective again depression and anxiety. This form of CBT is not effective against CFS except in the sense of helping to manage these two mental health symptoms. There is a type of CBT taught in books like The Depression Cure and Learned Optimism that shows how to retrain your thoughts to help beat depression/anxiety. For example, if you think that your life is over because of a certain event you would write down the thought and then write down a thought next to it that counters this thought with an idea that is less permanent and less pervasive such as "this will be a setback but there are things I can do to help move forward or recover."
It's a shame that these psychiatrists have misunderstood not only CFS but also CBT which is in their own field and used this awful misrepresentation of it to harm so many patients.
Found it a bit cheaper here:
I'm so sorry you're going through this. It takes a lot of courage (and endurance) to cope when your disease is being dismissed by the people who are supposed to help you and you're being isolated from other people and support.
I have been where you are and also felt incredibly hopeless and pessimistic about my future, and it was difficult for me to not get overwhelmed by that. In case that is maybe an issue for you too, I found this article useful: https://lifehacker.com/5852514/utilize-the-stockdale-paradox-to-help-achieve-personal-growth
It's about how a man survived being tortured as a pow in Vietnam. He claims that you can/should be both blindly optimistic about the certainty of a better future, and at the same time mercilessly realistic about the awfulness of the current situation. Basically, things are really shitty, they will probably be shitty for a while, but it will pass and get better someday. This mindset did help me.
Also, I'm not sure if this would be feasible for you, but if you are housebound and not able to see people and it's within your financial means, it might be really wonderful to adopt a cat. I found having a cat companion when I was home alone for long stretches incredibly comforting and she helped boost my mood a lot.
I tried meditation as well, which helped a little (I found this guided meditation especially useful: https://www.youtube.com/watch?v=u4gZgnCy5ew and I did it every day) but not as much as getting a cat.
I also tried antidepressants, which helped some, and had a small craft project I worked on a little every day.
Hopefully this advice is not annoying, and I hope you find a doctor who is interested in helping you and not lecturing you. Wishing you well and sending hugs from San Francisco.
Learn to code, it's not that hard and you'll have a whole lot of power in your hands.
I started making smartphone apps when it all started, and now I make mad money, and that sure is fun.
You can make websites, apps, whatever, maybe make up tools that could help your fellow CFS sufferers.
Example : http://www.codecademy.com/
You're welcome! Yeah, there's lots of free ways to start blogs like on Tumblr and Wordpress.com. I also use Anchor to make podcasts - I have a friend who takes me shopping once a week and we record a podcast together afterwards, so it's become part of my routine. I haven't figured out how to edit audio yet though.
I use low-dose stimulants daily & it just gives me enough oomph to get out of bed, bathe, etc. Granted, I've not been formally diagnosed with CFS but I've been chronically fatigued since age 12 after a flu-like illness & have spent many years researching CFS.
There are some studies showing that amphetamine-like stimulants can be useful in chronic fatigue as long as you don't have a heart condition or mental illness like schizophrenia/bipolar. But overdoing it & pushing yourself too hard while on stimulants can result in worsening symptoms the following day. As long as you don't abuse the stimulants & remain on a low dose, they're generally safe for most people.
I get far worse symptoms from caffeine than amphetamine-like stimulants (Benzedrex, Adderall, etc). The latter are smoother & longer lasting while caffeine is jittery, short-lived & often comes with a major mood crash.
The problem is getting a doctor to prescribe them for CFS, depression or other fatiguing illnesses. Sometimes you have to make due with OTC options like ephedrine (Bronkaid, Primatene) or propylhexedrine (Benzedrex). Of course I'm not recommending this. But it's what I've done for the past 14 years. My dose hasn't increased & dry mouth is the only real side effect, which results in more cavities. AMA if you wish.
>upstate New York
Pretty close! Upstate of upstate New York :) On a drive from Ottawa to North Bay, in Canada.
You can play https://www.geoguessr.com/ ! ah man that use to be free to play unlimited and guess places around the world. Now it is only one free game a day :(
Not sure. Surprisingly doesn't seem to have side-effects but only safe to use for 12 weeks.
NADH seems safe for most people when used appropriately and short-term, up to 12 weeks. Most people do not experience any side effects when taking the recommended amount each day, which is 10 mg.
More evidence is needed to rate the effectiveness of NADH for CFS
Makes sense, that is a known side-effect. It isn't recommended for long term use usually (although for copper absorption it is a good reason to have been taking it)
Zinc is LIKELY SAFE for most adults when applied to the skin, or when taken by mouth in amounts not larger than 40 mg daily. Routine zinc supplementation is not recommended without the advice of a healthcare professional. In some people, zinc might cause nausea, vomiting, diarrhea, metallic taste, kidney and stomach damage, and other side effects. Using zinc on broken skin may cause burning, stinging, itching, and tingling.
Taking high amounts of zinc is LIKELY UNSAFE. High doses above the recommended amounts might cause fever, coughing, stomach pain, fatigue, and many other problems.
taking supplemental zinc for 10 or more years doubles the risk of developing prostate cancer. There is also concern that taking large amounts of a multivitamin plus a separate zinc supplement increases the chance of dying from prostate cancer.
Uses for Zinc:
Anything that takes any form of effort can cause PEM.
Some are bothered by chemical triggers, and the reaction of the body caused by them is the exertion.
Other times it's stressful situations.
But the harshest thing is it tearing away the things we enjoy as 'too hard'.
I can't read technical stuff I want to do, or play with 3d modelling, or play games I want that are more challenging than agar.io, because if I do, I at best use up what energy I have for the day, and worse, am fucked for the week.
And, well, even on a good week, without that, I'm struggling.
I started tracking all of the supplements that I thought might help using kanbanflow.com so I could have an updated list of what I had tried and decided to keep or tried and rejected. I felt like I would have this illness for a long time so I would probably get around to trying pretty much everything.
When it came to prioritizing which ones to try I went for the "no-regrets" supplements first - those that were cheapest, lowest-risk, and that were commonly used even for healthier people. After that I experimented with the supplements that seemed most commonly recommended and had the most evidence base(somewhere there is a video of Dr. Klimas talking about what she recommends). The supplements that had the most risk, the highest cost, or least amount of recommendations were the ones I saved for last.
In March I was able to see an actual ME/CFS specialist so I have been following her recommendations since then. It's still a lot of trial and error as some things make me feel awful. She did recommend supplements that are more typically used for Mast Cell Activation Syndrome, which have been helpful and which were not on my original list!
A friend just sent me this new book about the history of misdiagnosing women. You might find it validating. It looks excellent.
When I was first ill I got this book:
One of the recovery stories in it is about a young woman who gets ME/CFS and the doctor basically got her to spend (I think it was) a year and a half in her room doing NOTHING - no TV, no radio, nothing. She was allowed to go downstairs to eat dinner with her family but that was it. She made a full recovery from doing that. (At least, that's what the story in the book says.)
I use this inflatable traction device for when my symptoms are bad and to ward off symptoms when I've over done. It's not perfect but it still helps a lot.
I've also found treating my MCAS with cromolyn seems to have helped reduce my CCI related symptoms.
I can't afford a PT right now but that's the next step.
Health Rising seems to think this works well. Is this what you are talking about? https://www.amazon.de/SUPPLIES-Jianas-Brothers-Oral-Salz/dp/B00DWC5SE6/ref=sr_1_20?__mk_de_DE=%C3%85M%C3%85%C5%BD%C3%95%C3%91&crid=2MSBBX9HCGL5N&dchild=1&keywords=oral+rehydration+salts&qid=1621448252&sprefix=oral+rehydration+%...
I have this lap desk and is extremely happy with it, as it means I can sit in bed much easier and I can reconfigurate it if I want to sit in other places like the sofa. I managed to find it for about 30$ on another site. So I don't need to have so close I have also bought a cheap bluetooth keyboard, it also makes it easier for the cat to sleep in my lap. It was worth the money for the increased quality of life.
Image of my set up: https://i.imgur.com/WmdB09f.jpg
Check out Track and Graph if you're on android. It has time duration tracking plus a whole host of other features and is very customizable.
Not sure if it's on iphone. It's also on f-droid if you don't want to use the play store.
You can get them for super cheap on amazon. This one that I have is 30 bucks and it works great. https://www.amazon.com/Luxe-Bidet-Neo-110-Non-Electric/dp/B009ZLRSJ6/ref=sr_1_17?s=kitchen-bath&ie=UTF8&qid=1492278460&sr=1-17&keywords=bidet
Amazon has these and I've gotten them before. Had to stop because it didn't fit in the budget anymore since I'm off ssi (trying to get it back) but they worked well for me (2 tablets in the morning).
I think what surprised me most is its available on Amazon. There are a ton of stand up electric wheelchairs on the market.
I had to completely stop eating veggies due to this illness oddly enough. I've been meat and dairy only for ~2 years now and have only seen positive improvement in both this illness and this sleep phenomenon. Counter intuitive I know, but I've been dealing with that insomnia thing far loner than I have CFS. I also noticed that my Mag levels are consistently higher when I get blood work done now as well. I used to be low but now i'm in the upper/normal range and I feel like my blood volume is up because of it- which means less orthostatic intolerance symptoms.
I still have problems going to sleep if i go to bed too early, but once i am asleep i can sleep a solid 8-10 hours and actually wake up refreshed. Which goes away if i stop drinking the water.
Going on melatonin caused me all kinds of sleep schedule issues, it actually started causing me to want to sleep in the afternoon instead of at night/early morning, no matter when I took it. And when I came off of it I was struggling to sleep at all for about a month. Hopefully its different for you, but just know there are potential side effects.
The salt water i drink to get the extra mag is
4700-5120mg potassium depending on taste
2tsp baking soda
1tsp epson salts
Heya, I'm in the same boat! My insomnia and complete lack of a normal sleep schedule has been taking a real toll. You know that point when you've been up so long that you become anxious? I've gained some relief from the supplement L-theanine at around 400-600 mg.
Here it is in bulk on Amazon: https://www.amazon.com/dp/B00E7GESLA/ref=cm_sw_r_cp_apa_i_ChGnFbQMF5D9W
This powdered magnesium also helps me relax:
Falling asleep is still difficult but these things have helped me incrementally.
Also: use screen settings that limit blue light exposure and put something semi-boring or monotonous in your ears. That way your brain is engaged when you can't sleep but also willing to let go if you start to drift.
Maybe one of these things will help you too.
On a related note. I just installed an app called "Woebot" and it has some interesting insight on things we tell ourselves that can exacerbate the problem. I'm not really into that stuff usually but its worth an install. I've been using it for 2 weeks now.
I’d start by reading Learned Optimism (I know this comment sounds like a joke but hear me out). I know nothing about your field so I will tell you what worked for me. Two books: The Depression Cure and Learned Optimism helped me get my depression under control. Without them this disease would have killed me. I know there are jobs you can do with your skills. However I also am confident you need to have good mental health in order to find them.
This is more old fashioned (a book and cds used together, not an app) but Jon Kabat-Zinn designed a mindfulness meditation program at the University of Massachusetts Medical School specifically for people dealing with horrible health stuff. It's about stress reduction and also about coming to terms with your situation. A therapist recommended it and it helped me IMMENSELY. Just the sound of his voice now is insanely calming.
Headaches are a symptom of CFS. Do you know what kind of headache you have? That would help with treating it.
If it's a migraine then OTC meds can help, in particular Excedrin migraine. It has 3 active ingredients and works pretty well for some people. If OTCs aren't helping then there are quite a few prescription remedies.
If it's tension then neck stretching and strengthening exercises will help. Also make sure your environment is ergonomic. Yoga can help too.
It could be a trapped or pinched nerve. That's more difficult to treat and will probably require professional help.
Your headache could be a sinus headache, exacerbated by allergies, or it could be nonallergic rhinitis. If it's allergies then antihistamines and nasal sprays can help. If the latter then nasal sprays can help.
Some people get relief from ice packs, some people like hot packs. Some like to wrap their head in an elastic bandage, the pressure helps.
When was the last time you had your eyes checked? Might be time
for glasses or a new prescription.
One thing that I use for a headache that won't go away is a cortisone shot. It takes a day or two to kick in but when it does it's amazing.
There is a good headache book out there: http://www.amazon.com/Headache-Help-Understanding-Headaches-Medications/dp/0618044361/ref=sr_1_1?s=books&ie=UTF8&qid=1433463044&sr=1-1&keywords=headache+help
I do. The upper limit is 40 mg so the 30 mg I get from 3 caps of ZMA +10 mg from my multi vitamin puts me right at the limit. It's important to not take too much because excess zinc impairs copper and iron absorption. There's actually a zinc taste test you can take to gauge your level but it's not 100% accurate as some people have taste disorders or allergies.
Dr. John Richardson wrote a book with a section on toxin mediated ME/CFS. It seems to be well accepted, at least in the UK, that organophosphate exposure can lead to a condition identical to ME/CFS. I don't have the book here with me and I skipped over the toxin section as it wasn't relevant to me, so I can't say how useful it might be to you.
Do you like oldschool RPGs or roguelikes? An amazing online RPG (technically an MMO, but I don't think there have been more than about 70 people on at once) called Wyvern just came out a few days ago on Android (and a few months ago on iOS, you didn't specify your platform.
The key is that the game was actually running and being in active development for years, but the owner worked at google and didn't have time to maintain it (for free), so when the server died a few years ago, that was it, until he relaunched it on mobile platforms. So the game is huge and deep and playtested and fun and the only different thing is the mobile interface and some minor (but important) changes related to that. I spent more than a week of playtime on the game years ago on PC and I cannot recommend it enough if you like games with an oldschool feel.
I'm on iOS so I have no direct experience, but I suspect that what you want is not a medication-tracking app, but an event-tracking app.
Medication apps are all about reminding you to take your medication on a schedule. It sounds like you want to take note of when you take unscheduled meds, and simply track what's happened in the near past.
This might work:
It looks a little fussy but at it's core it's a two-click way of noting that a med was taken, and the note can expire after a day.
I have this on my phone: https://play.google.com/store/apps/details?id=biz.mtoy.blockpuzzle.revolution&hl=en
And I actually do crosswords when I can't sleep but on a 10 inch tablet. There are quite a few free apps but I use this one. https://play.google.com/store/apps/details?id=com.ian.crosswords&hl=en
Seconding Abyssrium! It's adorable and really addictive, especially when there are new fish and goals during events! :D
I'm drawing a blank on my own suggestions right now because of brainfog, but I'm just gonna take a moment to be the nagging maternal figure and say that you should really download a blue-light filter app if you haven't already! It stops the light from your electronics messing with your melatonin production late at night. This is the one I like best!
For those that suffer fatigue resulting from eye strain, I would suggest you use F.lux for your computer, or for Android the Twilight app.
I contracted a severe case of conjunctivitis a few years ago that left me essentially blinded (felt as though sharp glass particles were in my eyes as I opened them) so I was forced to remain confined to my bed for several weeks, but this persisted well over a month. I had also been experiencing high levels of fatigue and flu during this time.
I was checked by an ophthalmologist at the NHS, who prescribed me with antibiotic eye drops (after my GP prescribed me with the wrong one) and explained that it was likely caused by bacteria entering the eye. After this incident I would go on to develop several other health problems throughout the years that would indicate a compromised immune system.
i’ve had nausea almost 24/7 for the past few months unfortunately:/ so i feel you. i was able to get some zofran from my doctor and that has made a huge difference. but some home remedies that have worked for me is smelling peppermint oil, drinking peppermint tea, ginger ale or other ginger products and mostly these peppermint drops
i hope you can find something that helps reduce it :)
I have a friend with really lovely curls and has joint pain/energy issues. I asked her what she does.
She buys this cream and then wraps her hair with a cotton shirt for two hours, and then it lasts for a week with little to no daily maintenance.
Hey, I've been flying for the past 2 weeks, and went through all of the same calculations and machinations that you're doing. But I just want to reassure you that, for some reason, my body is just *better* when I'm traveling. Maybe it's the adrenaline. Maybe it's all of the preparations and body support I give. But I wish I could have this body every day. I'm not saying it's easy, because I spend the time in pain and my heartrate is still bonkers, but it's just better.
Other things I do:
- Lots of body support. I have to roll out all the time. Heating pads. Anything to make me comfortable on the plane, like my ergonomic pillow.
- Dysautonomia support. A waist trainer (works better for me than compression socks). LMNT salt drink. Extra Florinef.
- Energy support. Desiccated adrenal (not after 3 pm!), extra Cortef. I'd be wary of prednisone, personally.
I have been dissecting all of the things that have been different for me while traveling (while I've felt better), and one I landed on as the only plausible candidate (if it's not just adrenaline/chance) is a ketone esters energy drink (this one: https://smile.amazon.com/KetoneAid-Worlds-Strongest-Exogenous-Caffeine/dp/B07S7F9X9Z/). I was originally taking it for immune support, in case of covid infection - there's some good research on this. But it turns out that it is also neuroprotective. All I know is that my heartrate was substantially lower than normal, despite being on my feet more. Time will tell if this is a real benefit, but mentioning it in case it helps someone.
Hope you have the same experience.
Oh, and if you want my covid prevention protocol, just ask.
Cooking using an electric pressure/multi cooker (This is the one I have: https://www.amazon.co.uk/Tefal-CY505E40-Electric-Pressure-Stainless/dp/B07C1MPN1S).
A go to meal of mine is bean stew - just dump in 4 tins of tomatoes, 4 tins of beans, a load of frozen pre chopped veggies, some herbs/spices, oil and stock cubes. Takes less than 10 mins to put the ingredients together, then you just leave it to do it’s thing (you can even set a delayed timer for it it to start cooking later in the day). I find I can fit around 10 portions in, so it’s very little effort for the amount of meals you can make at once!
Apples are both delicious and pretty healthy.
And, well, if you eat the core, no waste at all.
Cheese and a few apples, or a punnet of grapes can make a very easy meal. Other fruit can help. I'm lucky enough that fruit I order will stay good for over a week worst-case, more in the fridge.
I find an air frier and freezing a vital component. Three steps from bed, pull out something from freezer, jam in air frier on default. This is vital for days I'm not up to properly cooking. (many)
I have purchased https://smile.amazon.co.uk/gp/product/B07NS7B18N - 1000 foil 250ml trays.
These go in the air frier from frozen at its default setting of 15 min/180C, and out pops 'home cooking'.
Varying from a couple egg omelette with a teaspoon of dehydrated onion and herbs (ends up quite fluffy), to chopped apple and berry with puff pastry on top.
https://i.imgur.com/d6Nl6EY.jpg (not puff pastry in this instance).
I haven't quite figured out the optimal pillow setup to keep me propped up comfortably, but a good quality adjustable laptop table has been a lifechanger for me in terms of working in bed. (No more trying to prop the laptop up on my knees and pillows!)
I think this one [Amazon] is the one I have - very sturdy so far and well built, with several thoughtful touches like a drawer for pens and such and a removable ledge/baffle to support the laptop when at a steep angle without digging into the wrists.
It tilts enough that I can comfortably type away even while pretty much completely horizontal. (Depending on the position, a supporting pillow under the arm can be a good addition.) It's also light enough (if not covered in books!) that I can just lift it out of the way and set it on the side of my bed by the wall when I'm done with it for the day.
Also works well when seated on a couch or a floor (this model's probably a touch too wide for an armchair).
I've also seen similar models with book stands at the back of the table to hold a book/notes while you type.
Midodrine does help, it works by narrowing the blood vessels. So imagine if your veins are tighter, your blood pressure goes up. But it also helps to have more blood in your veins. Some people eat more salt, some drink rehydration stuff. IV therapy helped me, mostly vitamins and stuff. Some people think just pure saline in an IV helps them, but I felt like I immediately peed it all out. If you like Gatorade type drinks you could try that. Really you just have to keep trying things to find what works for you.
Former children’s librarian, children’s book critic for a major publication, and a mom with severe ME/CFS here! I feel like this is the book I’ve been looking for since I got sick. It appears only available as an eBook right now with a print edition coming this fall. Even if you don’t have children, consider asking your local public and even school libraries to purchase. It’s not perfect, but there are so many wonderful details only those who have or love someone with chronic illness will notice. This books made me and my daughter both feel seen and I know we’ll read it many times. No specific chronic illness is named, but chronic illness is defined and explained without being didactic. If I were still reviewing professionally, it would get a star and I’d work hard to put it on the “best of” lists that matter in terms of rewards and purchases. Gift it, share it, use it, and most importantly, know you’re doing your best. Enjoy!
Title: Chronically Loved
Author: Natasha Graves
Amazon link for more information: https://www.amazon.com/dp/B0BKWR85Y4?ref_=cm_sw_r_apin_ts_5Z62CV0CEW494RZCPQ66
Yes, it promised a deep dive in to the history of it and why it became so controversial.
Then she changed the name of it (I don't remember the original title), and basically just made it a personal vlog. A lot of us were disappointed, but she did get some much needed media attention, and have done some great advocacy. So it's hard to criticize her too much.
But yeah, if you want people to be more educated, I think Forgotten Plague is better. And if you want them to understand, I think Voices is better.
Both of them feed suicidalism though, so proceed with caution.
Shelves are ideal. I used to use wire cube shelves a bit like this. It was great, I could see where everything was.
These days I live at someone else's house and they won't let me, so I theoretically have drawers but really I keep what I mostly wear on a chair.
It must be difficult. Even though they believe in it in NZ it took 2 years for my official diagnosis from a neurologist.
If you have an e-reader, a book that really helped me when I first got diagnosed was CFS Symptoms Diagnosis Management, I recently got a new updated edition. It's by [Dr Ros Vallings](), who is pretty well respected and is not trying to sell supplements or anything like that.
Camping table might work too. Something like this. https://www.amazon.com/CampLand-Aluminum-Adjustable-Lightweight-Backyards/dp/B071KZPXG7/
(I'm metric and have absolutely no clue how large this one with inch measurements is, sorry if it's huge and will never fit in a bed)
I have had one very similar to this for the past 15 years or so. Mine does not have the tiny side flap for the mouse.
Super sturdy, can be folded very flat and put in several positions at several heights.
You need to push the big spring loaded button into the leg hinge in order to move it (in the default position of the button it locks the leg in that position. 15 degree angle steps.
The ones on mine require quite some effort to push in. Is this what you meant by snapping in place?
There also is a laser cut wooden model that doesn't use this mechanism. I think I saw it on YouTube where it was an Adam Savage one day build? Will see if i can find it.
Avoid stairs like the plague. Keep snacks handy for when you're not quite ready for a meal, so you can avoid trips to the kitchen. Keep tissues near by, so you don't need to go to the toilet if you need them. Basically, everything you can keep in one place, keep it there.
Another poster said to not worry about doing things properly. I LIVE by this! Doing stuff "good enough" is, as you might expect, good enough. Don't worry if things are untidy, as long as it's clean. Prioritize and do what you need to do, nothing more.
If you get eye-strain from using a computer or phone, use f.lux or I believe the mobile version is called Twilight. It gets rid of the blue light of your monitor, but what people don't always mention is that there's hotkeys to darken the screen, too. You don't need to fiddle with your monitor or anything, just press alt+page down. I get some mean headaches and just lowering the brightness a bit can make all the difference.
If you're stuck in bed and really need to rest, but your body wont let you, listen to podcasts. They're fun sure, but being in bed is a lonely thing, so listening to another person (or several) is nice company, too. I've been listening to one about weird medicine calledSawbones at the moment. It's pretty morbid, which I always find engaging, and the host are friendly and nice to listen to, despite some grizzly subject matters.
The new one is more effective, but it's two shots and the side effects are stronger. https://www.webmd.com/skin-problems-and-treatments/shingles/news/20180212/new-shingles-vaccine_what-you-need-to-know
Here's a link to it on amazon.com for you:
It certainly isn't cheap. So I hope it helps you! If you order when feeling good hopefully you can get a feel for whether it's worth it during the 30 day return window (:
Not noise cancelling per se, but I use bluetooth sleep headphones to listen to audiobooks and I actually sleep amazingly well even with the narrator still talking! I think covering my eyes must really help too.
Mine are by LC Dolida and I don't think my exact model is available anymore, but these look similar. Price has gone up (thank you, UK economy!) but I found the sound quality, ease of connection and the comfort all to be wonderful.
I'm prone to ear infections so I really couldn't have something that goes in-ear. It's also easy enough to pull out the electrics and wash the cover.
Hope that helps!
I made a mistake, usually it is potassium chloride.
Calf brain supplements help me too (though curcumin also helps me, and it sounds like it didn't for OP, so ymmv). I take Ancestral Supplements Grassfed Beef Brain, mainly because I trust the company - the owner seems a little manic, but a genuinely good man. You can read their page on that supplement here.
No supplement ever felt like "the cure," but I tried a ton of stuff the first two years (including other AS organ meat supplements and keto), and curcumin and brain supplements were the first things that made me feel I could get better. They don't make me feel more energetic, but they keep the brain fog down, which was incredible in those early days. (Others are magnesium and potassium, and maybe inositol.)
Prions are a thing, but AS is clearly aware of them, and I trust New Zealand's safety system. Plus, if it's possibly becoming bedridden in 30 years vs. definitely becoming bedridden now... *shrug*
Oh great, having some experience will make it so much easier! Also, look into adaptive tools - for example, crochet with a regular hook makes my nerve pain flare, but a big fat one for arthritic hands alllows me to crochet about an hour or two a day with zero pain. Same for brushes, pens, etc, cut these up the side to slip onto whatever you’re using. Experimenting with carpal wrist guards, these foam things, and pillows to prop up my elbows really helps keep nerve irritation down.
Mentally, the kits thing is really useful to me. A bit sad as I used to do all my own pattern drafting, sourcing, etc; but I content myself that making it is more important than designing it, and I do change up colors or materials a bit to make it more “mine”. It’s rare that I have the mental spoons these days to create my own projects.
I’ve got one of these metal phone holders which also works with my switch attached to my bed so I can lie in the most comfortable position and still play. If you are willing to convert to Nintendo it definitely makes life a lot easier.
Recurring or continuing mono can be caused by EBV reactivating, and can look similar to CFS. My daughter has it (she's a preteen). She has malaise, sometimes low fever and swollen lymph nodes, and is very fatigued. Her/my doctor has her taking olivirex (https://www.amazon.com/dp/B0058ABKN8) and monolaurin, both antiviral supplements, along with rest and sleep. She crashes if she swims or sprints. Doctor says she sees about 60% of her patients improve on the supplements, and the rest on prescription antivirals. But it can take 2-12 months of taking the supplements and being careful.
Can you ask your doctor about chronic or recurring mono? Since you know EBV was reactivated? Our doc says few doctors can treat it, but if you google it you can find more information.
https://smile.amazon.com/Shiatsu-Neck-Back-Massager-Relaxation/dp/B07M8J696K/ pretty cheap and effective, the shiatsu ball things move and heat up a bit which helps too.
And a foam roller like the other person said.
Stretching if energy allows, start slow ! (1 minute?) but every little bit helps here.
This is the one I have but there are lots https://www.amazon.com/Cozynight-Weighted-Sleeping-Meditation-Adjustable/dp/B07VXTPD8Y/ref=mp_s_a_1_2_sspa?crid=1QLCKAU357U9E&keywords=weighted+eye+mask+cozy+night&qid=1662077201&sprefix=weighted+eye+mask+cozy+night%2Caps%2C79&sr=8...
It is the perfect item for a crash. It relaxes your face and blocks out stimuli and I just really like having it for those hard days. Also wear it nightly to sleep.
Yes definitely! What I usually do is a gua sha stone ((this is the one I use). I think it’s the easiest and requires the least amount of energy. You don’t need to apply a lot of pressure at all, just lightly glide it across your skin. I do it almost everyday and I look so much less puffy. I’ll usually do it when I’m washing my face, when I still have water and soap on my face, so it glides easily. You can also use a facial oil or lotion. On days I don’t get out of bed, I’ll just use lotion with the stone so it glides smoothly on my skin.
This tutorial on youtube explains some basic movements with the stone. I usually focus on the areas that are prone to the most puffiness, like on my jaw and under my eyes. I wont always do the full routine with the neck and forehead parts if Im too exhausted, just the movements that I can tolerate. Also sometimes I’ll do the same movements but with my fingers and some lotion, without the stone
Also there are also other tools that I haven’t tried myself, like facial rollers and facial vibration massagers that you could also try, those usually use minimal energy and can be done while laying down
I have a light weight foldable stool similar to this one https://www.amazon.ca/Camping-BESUNTEK-Collapsible-Portable-Lightweight/dp/B08ZBZDZ6L/ref=asc_df_B08ZBZDZ6L/?tag=googlemobshop-20&linkCode=df0&hvadid=579069257694&hvpos=&hvnetw=g&hvrand=10683410724835581064&hvpone=&hvpt..., but mine is 15.5” tall and from a different brand. It fits in my kids sized backpack and takes around 14 seconds to assemble. I use it to conserve energy when I am stuck in line or waiting for a bus, and can pull it out if I just need a rest. The other two things I like to pack are a pair of ear plugs (noise cancelling headphones would probably work better) and some sunglasses. Hope you can find something that works for you.
Granola bars might be nice! They have more healthy options but also some mildly sweet ones, I like the ones with dark chocolate in them!
Also, I keep my snacks in a rolling cart and it is very useful! I just refill it with food and waters when it gets low. If you don't have one, it could help to store the snacks there!
(Example of a random one I found on Amazon):
You have a diagnosis. Many of us have more than one. For some reason, CFS folks seem to be prone to both B12 and Vit D deficiencies, and both of these deficiencies cause fatigue, in addition to the CFS itself.
And this is very good news! Low B-12 makes people feel pretty low, and it's cheap and easy and safe to fix.
I've had good luck with this, but of course there are lots of choices:
Note that B-12 is absorbed bets through the mucus membranes of the mouth. I crush a tab lightly with my teeth, and use my tongue to spread the bits around between the lips and gum, and under the tongue, and try to leave them there for a few minutes. I often feel noticeably better in like 30 minutes.
Stress-Relax Chewable Suntheanine... https://www.amazon.com/dp/B00B95I5GQ?ref=ppx_pop_mob_ap_share
Stress-Relax Chewable Pharma GABA... https://www.amazon.com/dp/B00B95J2QI?ref=ppx_pop_mob_ap_share
Serious results with these two.
Not much... I can't find any research that says anything about TMJ directly causes fatigue (through poor sleep). Anecdotally I've talked with lots of people who claim they sleep much better with their mouth guard...and a dentist I recently saw suggest that even a regular mouth guard could help with apnea (not sure if this is true).
If you have TMJ and are willing to try out a cheap mouthguard you can find out pretty quickly if it has any effect I'd say:
That's the one my dentist recommended.
I bought a portable induction cooktop partly for this reason. Easier to clean, heats up liquids faster, turns off automatically if no metal is on it), and crucially – it has a timer. Made my life a little bit easier, not that pricey. Also better for my health since I’m not burning methane (“natural”) gas in the house, and doesn’t generate much excess heat. You may have to replace some pots and pans, but the world is moving towards electrification anyway, so I figure that’s coming either way. I got the Duxtop 1800W: https://www.amazon.com/dp/B00GMCAM2G?ref=ppx_pop_mob_ap_share
Thank you for the info! I looked it up, it's cheaper than the ones I had found. It's also got good reviews and a decent size.
How often do you need to replace the filter?
For those interested, it sells from $90 CAD + shipping on Amazon: https://www.amazon.com/Xiaomi-Purifier-Efficiency-Eliminate-Coverage/dp/B094NST3N8
I have had a lot of success with increasing my deep sleep (avg of 12 minutes per night according to my Fitbit) by using light therapy. I now average about 55 minutes of deep sleep per night and feel much less sleepy during the day.
My sleep apnea doctor recommended it when I was still exhausted after using a sleep apnea machine for 6 months. I do use the light for more than the typical amount. I get 15 minutes every morning in bed with the light on my nightstand. I move the light to the living room sofa every day since that space gets no bright light otherwise. I probably get 3 or 4 hours over the course of the day of lying down with the light 18 inches away.
Here is the $40 light I use: https://www.amazon.com/New-Verilux®-HappyLight®-Lumi-Plus/dp/B08BCLLYN5/
I rest a lot and take painkillers usually. I recently started using a TENS unit which definitely helps. it's a small device that sends electrical impulses into your body which disrupts pain signals in the area. this is the one I use.
it's the little things for me.. I don't know if anyone else will be as enthralled with this as I was. I have a really puny room so it works well in here on the ground by the foot of my bed.
there was a $10 off coupon when I got it so look out for that if it's still there. I hope i'm allowed to post this link, fuck amazon, but anything for our additional comfort/entertainment we deserve! this is not an ad.
If you were actually Christ-like, you would not be trying to kill people with false medical advice.
Freedome of speech in America refers to the protections given by the first ammendment to the constitution, which deals with speech being protected from government oversight. Look that up on wikipedia. And again, there have been legal challenges and carve outs to that when it has the potential to harm people.
I could also care less what guise your magical sky man wears, when you are actively trying to hurt people with physical illnesses.
That's why I got it, the wheelchair is just too big inside the flat and for example too low for the kitchen. And for us with POTS it's mainly the not actively standing and we don't need full support like in a wheelchair.
I just got wheels looking like this https://www.amazon.com/wheels-replacement-casters-hardwood-duty/dp/B01G643EU6/ref=mp_s_a_1_2_sspa?crid=293CP3B3NYXRZ&keywords=stool+wheels&qid=1656817281&sprefix=stool+wheel%2Caps%2C292&sr=8-2-spons&psc=1&spLa=ZW5jcnlwdGVkU...
And a stool like that https://www.amazon.com/KKTONER-Leather-Rolling-Adjustment-Drafting/dp/B082LVP21J/ref=mp_s_a_1_3?crid=293CP3B3NYXRZ&keywords=stool+wheels&qid=1656817366&sprefix=stool+wheel%2Caps%2C292&sr=8-3
I made sure that the size of the metal socket of the wheel is the same and when putting the stool together put the other wheels in. I hope it helps you too.
Do you know that pots has a lot to do with CNS malfunctioning? The Stellatum ganglion block dropped my heart rate by 30, before I couldn't stand up without fainting immediately and even fainted while sitting in a wheelchair. I haven't fainted once since. What also really helped and lowers my heart rate for about 20 beats is a corset or medical abdominal binding. It keeps the blood from pooling down. Compression socks aren't that effective because then the blood is already pretty far down in the body.
Chronic hyperventilation is often a factor, breathing exercises and IHHT Hypoxietherapy can help.