Treatments for ME Chronic Fatigue Syndrome
ฝัง
- เผยแพร่เมื่อ 19 ม.ค. 2022
- I have had ME/CFS since 2007. Over the years I have tried an array of holistic and mainstream medical treatments.
THINGS THAT HELPED
🟢Functional medicine
Also called integrative or naturopathic medicine
Aims to IMPROVE your health by discovering and treating the root cause of your illness rather than MANAGING your illness using symptom suppressing drugs
Diagnosis involves laboratory tests not used by mainstream medicine
Treatment is a combination of diet changes and nutritional supplements
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🟢Acupuncture
Very effective at calming my body and reducing stress/anxiety. I always slept very deeply after a treatment
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🟢Chinese herbs
Helped reduce my sensitivity to supplements
Improved my energy
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🟢Antimicrobial herbs
After taking these I no longer felt horrendously ill 24/7. My dizziness, nausea and general feeling of being poisoned significantly reduced. Movement became easier
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🟢High dose probiotics
Currently taking 55 billion CFU (aiming for 100 billion)
Tummy feels lighter
Sleep improved
Generally feeling better
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🟢Enforcing boundaries
Learning to say no and prioritising my own needs has been crucial to keeping my energy levels stable and avoid crashing
THINGS THAT DID NOTHING
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🟠Yoga
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🟠CBT - Cognitive Behavioural Therapy
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🟠Meditation
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🟠EFT - emotional freedom technique
Tapping on points on your face to release emotions and trauma
THINGS THAT MADE ME WORSE
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🔴Gluten-free diet
I replaced white, wheat based products with whole grains such as brown rice and quinoa. I gradually developed digestive issues but it took a year before I realised the cause was the gluten-free products. By this time my stomach was so bloated I looked six months pregnant! Within days of returning to eating gluten my bloating significantly decreased & over the coming weeks my energy improved. I later discovered I had SIBO, small intestinal bacterial overgrowth. The whole grain foods I replaced the gluten foods with had been feeding the bacterial overgrowth causing gas and excessive bloating
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🔴Dr Lam
I have been bedbound for 2.5 years as a direct result of his treatment
www.drlamcoaching.com
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🔴Physio - GET - Graded Exercise Therapy
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🔴Toxic relationships
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🔴Not listening to my body
Ignoring my symptoms and using my willpower to push through
Being pressured into treatments I felt were not appropriate
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KNOWLEDGE & EXPERIENCE
I regularly ask questions to the ME/CFS community via Instagram stories, typically seeking peoples knowledge and experience on a specific topic. Their words of wisdom are then complied into a short video which is posted on TH-cam and Instagram
View the videos here
bit.ly/livingwithmecfs
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#gradedexercise #cbt
What treatments have you found helpful? And what didn’t work?
I love hearing about other peoples experiences so feel free to share in the comments
Can I ask you what did you receive as part of functional medicine? 💕
@@christinavelazquez8931 I had testing to look at my hormone levels, my mitochondrial function and my gut health. I was then given advice on changing my diet and taking specific supplements.
@@livingwithmecfs thanks
@@livingwithmecfs Can I ask what diet changes DID help? And probiotics?
@@B3l0v3d05 When I developed issues with histamine I adopted a low histamine diet and that helped reduce my “hayfever” style symptoms. When my ME became more severe I found the caffeine in chocolate/cocoa powder too stimulating so I switched to using carob.
I have tried soooo many probiotics but they have given me very little improvement. The only exception is Probiota HistaminX from Seeking Health. After taking that I felt much calmer and my sleep improved - not the expected result but a very welcome one!
I’ve tried lots of different diets and supplements to help my gut and the most effective ones were butyrate and antimicrobial herbs (particularly grapefruit seed extract). I didn’t experience any benefit by cutting out whole food groups (eg. grains or dairy) but removing the few foods that trigger negative symptoms has been helpful
Things that have helped me:
1. Vitamin B1. Makes an amazing difference for me!!!!!!!!!!!!
2. Sun exposure on my back (because I normally avoid the sun at all times to prevent aging). I feel so amazing after I get a bit of sun on my back!
3. Juicing. If you have gut problems you might have trouble absorbing some of the nutrients from your food. Fiber is also tough on my system nowadays, and juicing removes that, leaving vitamins and enzymes in a form the body can easily benefit from regardless of the state of the gut.
4. S. boulardii and bovine colustrum (I use Travelan brand) to fight yeast overgrowth in the gut.
5. Lemon water with honey every morning.
6. Celery juice (I have mine later in the morning). Although I don't get organic celery, I prep the celery by soaking it in water with a tablespoon of vinegar added to help remove pesticides.
7. I do get neck pain so when that happens a neck brace helps support my energy levels and I also avoid anything that makes the neck problems flare up.
8. I try to live as simple and low stress/minimalist a life as is realistic for me.
9. Avoiding toxic people who are energy vampires.
10. I have saunas to detoxify and destress.
11. I keep a symptom diary to try to help identify patterns on good and also bad days.
12. I don't do it all of the time but oil pulling seems to help as well.
Great suggestions! I do some of these and they definitely help!
B1 needs Vit D for a Carrier to absorb...
Plasmalogen depletion is a huge driver in being unwell for many of us.
I found many connections in your List like celery juice, fiber...
Dr Mary Ruddick was really helpful in the Links as she suffered from Dysautonomia
Here's to a healthful 2024❤
Hi, I ama high schooler and I have this problem. Thank you very much. Your ideas really helps.
I used to have a neck that would just go out of whack so often sometimes I couldn't lift my head off the bed without help. Somone recommended...manganese and that has helped all my joints be stronger but especially my back and neck. I used to be hypermobile as well weak joints and now they're good. I've had a few strains but never like the way it would just feel about to fall off my spine if I moved wrong. Maybe it will help you too i don't know what foods has it i just took one bottle of supplements and another one which I took occasionally ..
My journey with ME/CFS started after i received the Pfizer Covid Vaccine in the Spring of 2021. Been dealing with dizziness, brain fog, headaches, and worst of all fatigue and PEM which is absolutely terrible. Never even had heard of ME/CFS before any of this and it took me doing my own research to find out this is what i have.
I’m sorry to hear you have been struggling. I have come across a few people whose ME/CFS was triggered from vaccines, not necessarily the Covid ones
@@livingwithmecfsplease who probiotics? Name, brend??
@@elminapitic4753 I originally used Natural Factors Critical Care probiotics (100 billion CFU) but after a while I found they triggered histamine issues so swapped to Probiota HistaminX from Seeking Health. They are a lower strength but I found they work much better for me
I was unable to get out of bed for a long time and I'm still.bed ridden.After having prizer jab 2021 I'm freshly diagnosed last year. You can put in a claim for vaccine damage payment in UK.😊
@@julielewis-vk1bbhello, how do I do that please? My problems definitely started after my second vaccine. Also, do you know what ME stands for?
Best wishes
I was just diagnosed. But I'm also gluten and dairy intolerant. This is going to be a long road, but I'm staying positive.
Staying positive is a good strategy, it will definitely help you!
I've found that digesting food seems to take all my energy away from me. Then I crash with post exertional malaise. So in order to keep me from being bed bound all day I practice intermittent fasting. It keeps me from crashing. I'm thinking about trying methylene blue.
Interesting, I’m the opposite, I need to eat every 3 hours to keep my blood sugar stable otherwise I crash! Glad you found the fasting method works for you 😄
Let me know how it goes with the methylene blue 😀
@@livingwithmecfs Have you looked into berberine or possibly D-Ribose or glutathione, depending on the situation that you may have.
@@randallhesse5011 I havent tried berberine (although I have used other anti microbial herbs). Unfortunately d-ribose didn’t give me much improvement and glutathione made me massively worse! How about? Have any of these helped you?
@@livingwithmecfs berberine, I think, has helped. I've only had it in herb form. Oregon grape root and goldenseal. Hard to tell. I'm still dabbing and monitoring how I feel. I haven't got around to getting the others.
I also crash after eating so only eat late, but I also get gerd when I lay down. kefir didn't help.
Thank you. The ideology that you need to 'keep trying' with exercise, and the shaming not trying hard enough, have given up made me worse. I struggle with thinking im not trying hard enough. I miss movement so much. But everytime i try i get such bad PEM. Even the most gentle of stuff. When i read people getting back to movement, im so happy for them, but also i feel so rotten that im failing.
Sorry you have had a bad experience. I know that sometimes we feel under pressure to try to move. I have found that no matter how I try to increase my movement there is always a level I can not get passed. My body just can not produce enough energy to sustain that level of exertion. I think there is increasing research showing people with ME/CFS often have issues with their mitochondria or an overactive immune system, both of which will impact how much energy your body has to function. I believe it’s more a case of addressing the underlying issues of why your body is struggling to produce energy rather than just trying to force it to do more , like in graded exercise
@@livingwithmecfs❤ thank you for such a compassionate response. Beginning to understand and then work to manage me/CFS takes a lot of courage, hard work and determination. Really appreciate your posts.
@@swoo4914 aww thank you 😊
Baltic amber bracelets for wrist/hand pain🤎 tart cherry juice for sleep🍒 rest & pacing/energy envelope 💌 belly breathing🌬️ being in nature 🌿💦🌞healing unresolved trauma❤️🩹somatic healing🫶🏽 nutritious eating 🌱my loving husband's care🤎prayer, lots of prayer 🙏🏼🙏🏽
Great suggestions! Glad they are helping you 😊
I had extremely similar symptoms and nobody could understand why. Couldn't sleep although being extremely tired, muscle pain, headaches, thinking hurted, couldn't speak properly, couldn't digest food, light and sounds hurted me, I was essentially tied to bed. I went through many misdiagnosis but I luckily didn't suffer for too long because, quite long ago, some kind of silent epylepsy was hypothesized. EEG and sleep study didn't show anything relevant, as well as other exams, but they weren't convinced anyway, they said that most of my symptoms were tied to unstable electrical activity in my brain despite tests showing everything was "fine". They gave me an antiepileptic and 30 minutes later I had all of my energy back. I'm still taking it on a prescription and I've never had symptoms since then. This maybe won't help in your very specific case but I think it was worth to share my experience. Maybe make your neurologist read this.
oh wow, this is really interesting! I’m so glad they were able to figure out the cause. Would you mind sharing the name of the medication?
@@livingwithmecfs It's Gabapentin and Pregabalin (they're the same but my neurologist said mixing them up and using less of each decreases risks of developing issues with pancreas and other organs). I hope this helps.
@@Melody666 that is great thanks 😊
That is very helpful because eive never heard of this before thats the problem with a symptom cluster often they just stop at me without trying to figure out the cause and fix that. Very good that they did my son has something he's always exhausted hairnfalling out. Doctor did one blood test and said he's fine. He's not fine he's in a heap. It's a struggle not having doctors thst give a hoot .
@@Padraigp sorry to hear you son is struggling. Fatigue and hair falling out can be a sign of under active thyroid. Obviously I don’t know your son’s situation but maybe you could find another more sympathetic doctor to try and investigate further.
A ketogenic diet has probably helped my CFS more than any other treatment. Certainly not a cure but it took me from bedbound to housebound at least. It got my weight back to where it was when I could still exercise too which has been helpful.
Oh wow that is great!
Keto was night and day for my husband as well!!!
Actually, I feel like my realationship is getting toxic through the overall situation with patient-carer-dependency 😪 where I am not able to provide the support that would be helping my partner during her recovery (severe long Covid, pots, me/cfs,PEM). I am the one working full time and caring for her (almost bedbound). There is no one supporting additionally as we‘ve moved from Germany to the uk and rarely her sister or mother travelling over. Which makes me stressed and she feeling lonely and combination is often escalating in fights and she is getting into an even worse crash through emotional stress. Lot fights happening and it is super hard to stay always calm when even small/minor things causing a huge fight.
I feel for you, you are in a difficult situation. This illness can put a strain on even the strongest of relationships. Have you tried getting in touch with an ME charity? ME Association and Action for ME are two UK charities which provide advice on the support people can access, both financially and physically in terms of home help. They also have phone lines people can call to chat about stuff, don’t think it’s officially counselling, it’s more to help relieve the loneliness and isolation people experience
@chaos5693 I feel for you, you are in a difficult situation. This illness can put a strain on even the strongest of relationships. Have you tried getting in touch with an ME charity? ME Association and Action for ME are two UK charities which provide advice on the support people can access, both financially and physically in terms of home help. They also have phone lines people can call to chat about stuff, don’t think it’s officially counselling, it’s more to help relieve the loneliness and isolation people experience
I spent years caring for a spouse who had COPD, PTSD and a non healing wound, all the while I had chronic pain and fatigue symptoms. Since he passed away I have spent a lot more time in bed but I continue to feel worse.
Listening to my body, pacing myself, learning to accept that I can’t do what I use to do. 6 years- took 3 years to find a doctor that believed me and didn’t make me feel like a fat, depressed, lazy, neurotic!
Sounds like you have some good strategies! This illness certainly does teach us about listening to our bodies! And you are definitely not a fat, lazy, depressed neurotic
You rule. This video is great. Thanks!
Haha thanks 😁
Thanks for this! I’m heading into heavy PEM & endeavouring to make some kind of sense out of it. If my body was a plane then it’s stalled & in a nose dive: brace-brace-brace!
oh no! hopefully the PEM doesn’t last too long! Put on that emergency oxygen mask before the plane crashes!
But what is most helpful for me is a mental trainer. When I was a child something bad happened to me. And about 2 years later I also became seriously ill after i worked on a car fair on the weekend, I think when I was around 16, and doctors couldn't really help, at first they made a drug and alcohol screening which was negative, i got tons of medications for the heart, and my parents were not happy with me, i was a minor and sick. I moved out with 14 already. But then I got a recommendation to a mental trainer who was also a doctor, he was very old and experienced. He always hypnotized me and it feels super amazing and relaxing, he said always "All my growing abilities will be used exclusively for the benefit of my master, I will restore physical and mental health, I will always have full control over my abilities and senses on this and every other level of consciousness, the more often we do these exercises the deeper I go, deeper than before." It's usually helping me when someone tells me what to do. Like to be stronger and stand up and to walk around.
It’s really interesting to see what has helped you
Thanks 😊 I always find it interesting to hear what treatments people have found helpful!
B12 shots helped me, but I do not have a dr who is willing to prescribe those anymore. Got a direct lift, both energy and passion for life, and a lot out of a those, had to take half of 5mg/shots every 3rd day, to have a balance me, when I hade them for yrs.
Listening to my bodys whispering now you have to take long rests, is crucial. Boundaries Yeah!
And doing things I love, bikerides feeling the freedom in them, painting and ceramics, but never any time over, pr space, for those in the moment.
I am in a period of a lot of inflammation right now, with fever 37.8-9 degr c.
Teary eyes, a lot, from not feeling well, days one lose ones lust in life, cause pain is everywhere.
Really burning hot hands when it comes, so tired, and then feverish.
Dancing, very stillstanding, listening into what movements want to come out of me, to beautiful music, is helpful, when I can. Have mo place or, time to feel the freedom in that either, to do that, right now.
Miss that a lot. And being well, having energy in me, always.
Finding inner or other, laughters with someone,
Joy in just Being, listening to good music, also helps, those days when body is better, and remember those Joys comes again, the others days.
Meditation Helps a lot, when I am in no brainfog, otherwhise it is difficult. Breathing exercises, and stretching I have to do every day.
Thanks for your uplifting video
I’m glad reading other people’s answers helped. It can be so interesting and informative to see what works for others. Sounds like you have quite a few good strategies yourself, so thanks for sharing them 😊
Thanks for what you are doing in this Channel, keep up the good work ❤️
Thanks for your kind words 😄
1997 for me. I'm an expert on my disabilty. ❤ 😂 When all else fails...FASTING and ART(Aggressive Rest Therapy) have brought me back to life. Magnesium, B-50, multi-vits, olive oil, mini-tramp....
oh wow 1997 is a long time! I became ill in 2007 and have tried sooo many things….definitely agree with you about magnesium and agressive resting, both have been very helpful for me 😀
GREAT WORK
Thank you 😊
I hear u ! Thank u 💖👍💕✌️💚🙏
Glad you found it helpful 😀
I LOVE EFT! I’ve found it sooooo helpful for processing emotions and trauma. Gentle yoga has helped me a lot too - only at the right stage of recovery though. So interesting how different things work for different people. The major thing that’s helping me to heal is nervous system regulation, brain retraining, somatic experiencing and trauma healing. I did CFS school programme and it helped a whole lot, alongside somatic experiencing and IFS therapy. Also, nature, grounding, sunlight, balancing my blood sugar, bucket loads of self compassion and acceptance (I love Kristin Neff’s work), developing a strong sense of my true self, setting boundaries, not pushing through when symptoms are high. Watching recovery stories - especially Raelan Agle on TH-cam. I love Dan Buglio’s daily videos here on developing a sense of safety with symptoms. I think we all have to find our own way with this, but there seems to be some common themes 💚
thanks for sharing what has helped you. It always interesting to learn about what generated improvements for people 😊 I haven’t heard of Dan Buglio so going to go check him out!
Oh Dan is the MAN. He’s so brilliant at bringing a sense of calm and safety. I like to binge watch him when I’m freaking out a bit 😅
Magnesium
Oh yeh, I love magnesium!
Montmorency cherry extract is for me a bit helpful. It's to purchase in drugstores. I just recently came across that.
Probiotics kimchi, Nato, Kefir, kombucha
@@mariaseidi4023 Hi thank you. The topic with probiotics did i have a very long time ago. It seemed in my case to make it worse, cause thats when i got red spots on the hands and arms and they didn't go away ever since. One was omnibiotic the other was kijimea.
@@kathyhhb For me fermented foods was great ,im working now ,i could hardly live my House,IT CFS ,i believe at Same Point your Body heal itself for Same people ,6 years in this ...
Short but informative!
I have CFS/ME, FM and hypothyroidism. In the beginning, accupuncture and massage worked well for me for a short period of time then they didn't. Neither covered by insurance, either, so it was all out of pocket when I was only working part-time - and barely that (elem. art teacher). Nothing much has made a dent except Naltrexone for pain. Still have pain but not quite as severe. Retiring just before Covid helped - less stress for sure after teaching ill for thirty years.
You did well managing to teach while having these health challenges! Hopefully retirement will make things easier 😊
I am in England.
After years of doctors scratching their heads one has finally predicted it's CFS, and I'm awaiting tests and I have already honest to God forgotten what my point was.
Edit: oh yeah, I have been put on 150ml of antidepressants a day, because I've been housebound for years, I bleed on the toilet when I 💩, which is far more than normal, I'm male, and it isn't nice. How is that CFS? Anyway, because I've been housebound for years I am now apparently mentally unwell, I have a terrible memory, I've woken up exhausted for so long I forgot it wasn't normal until the doctor mentioned it, I'm sad all the time, no job, no life no purpose, but a loving Wife and kids. Been told I don't have to look for a job indefinitely based on my mental problems alone, I have no friends, I'm 41, anyway my point was you said listen to your body. These tablets make me numb and fuzzy, and everyday my brain tells me not to take them because I don't like them.
I never used to be like this. I used to play football and have friends and be slim and fit and happy, and have energy and a job, I could go places. Now it's all the opposite. I can't even leave the house.
Im not sure if this is what i have but since winter my body has been weak and i just feel fatigued all the time and just want to sleep. I went to the dr back in May and was told im prediabetic but for awhile the fatigue feels like its getting worse. It could be the humidity or something else but im alittle concerned 😢
It can be tricky getting a diagnosis for ME/CFS because there isn’t a diagnostic test. The ME Association has lots of free literature that may help you. There is also a fact sheet in the diagnosis section about thyroid problems as symptoms of low thyroid function can be similar to ME/CFS
I believe I have cfs it happend after I got covid . I have a question . When u over do it does your chest get really heavy with pressure and pain it feels like someone is sitting on your chest? It happens if I take to many steps any more then 200 and or when I try to sweep and mop the floors? It puts me down for most of the day and sometimes for the next few days . Showers are the worst too
What you are experiencing is PEM - post exertional malaise. It is when you over do it and your symptoms become worse. Symptoms that flare can vary a bit from person to person. I don’t get pressure on my chest but my body aches and my sensitivity to light and sound is much worse.
Showers are tough. Some people use a shower chair or have a bath so they can lie down. Others choose to body wash with a flannel.
Do you know much about pacing or finding your baseline? These are both key in learning how to avoid PEM
@@livingwithmecfs thank you so much for your quick response. Yeah im familiar with P.E.M . Ive been sick for about 3 1/2 years . After my reinfection 19 months ago its been brutal . Im mostly house/bedbound . I have found my baseline . I use a wheelchair now when I leave the house its the only way i can get around out of my house. its just tough when u don't get help cleaning around the house . I have a chair I use but I cant let the water sit on me . I use the shower head and doust myself then scrub and clean then a quick rinse. The chest pain/pressure and fatigue is the worst for me . I recently started TCM and its helped my brain fog and light and sound sensitivity. I can now watch a show or 2 before I couldn't watch anything and any mental exertion would cause my body to shut down id hallucinate, be so out of it and be In a deep de realization state . Its been really hard to adjust. I find your videos really helpful and it gives me some hope that im not the only one going through it. Im only 30 years old and I was super fit before all this . But I just wanted to say thank you for all your time and research 🙏 and most importantly thank you for staying strong 💪 ❤
@@kylechavez7961 It’s great you have started to see some improvement with TCM! Adjusting to this very limited life can be tough, particularly if you were fit and active before. Don’t loose hope, things can get better.
I’m glad you find my videos helpful. 😊 Ive also recently launched a website where myself and others from the ME/CFS community will be sharing more helpful info livingwithmecfs.co.uk if you want to check it out
@@kylechavez7961 Hi- what is TCM??
@@B3l0v3d05 Traditional Chinese medicine
So interesting!!
Thank you 😊
Methylene Blue. Made me worse the first two weeks and then I started feeling better. Never thought a blue dye would have such a potent effect on me.
That is awesome! ❤️
What did Methylene Blue help with? What symptoms...
What is Dr Lam? Also do you have a video anywhere, or could you give an explanation of what you mean by antimicrobials?
Thanks :D
Dr Lam is a doctor who claims to be an expert in fatigue but his treatment made me seriously ill. In four months I went from being semi independent to completely bedbound, unable to feed myself or wash myself. You can read more about my experience here livingwithmecfs.co.uk/charlottes-me-cfs-story/#Dr-Lam
Antimicrobials were products I was advised to take to help kill “bad bugs” in my gut - tests showed I had SIBO, a parasite, and a general imbalance in gut my microbiome. Products that were recommended include Atrantil, ParaSmart, grapefruit seed extract and oregano oil.
Hey I just want to ask if you have tips for people who have cfs too but a big problem suddenly with constipation? :(
Magnesium citrate and triphala can both help relieve constipation. Magnesium citrate is a laxative and triphala is a blend of three herbs used in traditional Indian medicine. Personally I found triphala gentler. You can buy it in a powder so that it is easy to slowly increase the dose and find what dosage works for you. I only needed 1/4 teaspoon per day.
If the constipation has happened suddenly maybe it has been caused by a diet or medication change.
And I'm also using a heart rate variability biofeedback machine called the emwave2 by heartmath. I can honestly strongly recommend both machines if you think you may have the same cause. They are a bit expensive but we'll work the investment.
Castor oil applied to the belly button.
Screaming from my Gut!
How about diet ? Look into the AIP Diet or Paleo diet.
Doctors made me worse. High blood pressure medicine, statins, diuretics antibiotics. I tried cpap but got no help when the ill fitting mask kept waking me up. Weight lifting caused pain that never went away before that I was just tired. Keto carnivore hasnt helped. Eating anything makes me crash. but I keep gaining weight. Right after quitting smoking edema got much worse. My symptoms started in the 1980's and have gotten worse over the years.
You know what's me helping currently a lot? Being in a small tent outside in the pure nature. Fresh air, rain, sun. And if you crawl, but get outside. Not inside of the room with curtains closed or a blindfold over the eyes. It's not like i don't have me/cfs but it is simply doing good, for the overall wellbeing. That's for me at least, but i'm a rural person. You can reach out with your hand and touch the grass. That is nice. And because an app told me to, i guess i need that sometimes to be pushed, or i like it dominant idk 😅 Probably i like dominant. I can barely eat since many years i eat only a few spoons of soup per day and sometimes not at all, but im tiny, and i am used to eat really less. It is not helpful to have negative or harmful people around you. And don't let yourself force into sexual actions because they think you are desperate for money. If you think you can't get away due to your condition, yes you can, you always can, it feels like dying but you can. But if you have actually people who help you then let them help you. It is not expensive a tent costs 25-30€, a sleeping bag costs 20-30€, and its nice warm, a hot water bottle, i have a small cooker for 8€, and a small container with soups in glasses but you can also buy it in cans. I also have a little shower that costs 6€, and a solar power bank for 25€ for the phone.
That's all the standard camping needs. And listening to music. I can't walk around, but I enjoy a bit of hot soup and hot tea that i have in the thermos flask. I don't know, I don't think it's actually possible to get rid of all the damage. My hands are red and have wrinkles, and you can see it on my fingernails too. My symptoms are constantly changing. But what I don't need in my life is for someone to call me names, and for everyone to just say to me "yeah, just go to the doctor, go to a psychiatric hospital, shut up, I can't help you."
And meditation is good. And massages that i do on myself. Hot water bottle on the back. Is all not a wonder cure but well, you gotta work with what you have. I have tried plenty of natural medical treatment possibilities over the years and wrote it in a book, i also tried own approaches, but it didn't work. Really nothing had a meaningful effect. Except of once a natural herb that i used but only for 24 hrs it made it significantly better and i could walk again, but on the next day it became a lot worse and no matter how much of it i took it didn't help anymore. I guess it is found in mushrooms. On some point after many years i had no money anymore so now i can't buy anything, here or there maybe a herb for max 20€ but thats about it. I guess chemical Antivirals or monoclonal antibodies might be helpful but i can't afford any of those, and also not HBOT, or Apheresis and all of these fancy things that other people could do. I was sent away from all hospitals. I went to private pay doctors. I invested everything i had. I payed off teeth implants that i needed. And i only got a pack Bisoprolol and a pack Prednisolon. And that's it. So this hit me too young, i had to renovate a teardown house anyways, and a little child alone. All in my 20's, with diseases and injuries in the past. This is for me not a pampering, if i would ask my father for money for any therapy he points a finger to his head.
So if you guys out there have a lot of savings then see if any antiviral medications would help you. It's sometimes better, like today, then i'm a little bit online for a few minutes and can write a bit, but i can't do more atm. Yesterday it was extreme with symptoms.
I think soup is very good. Don't get me wrong, you will still be sick. But i took care of a carecases in the past and from a past boyfriend his father had parkinsons, and when you have problems to swallow any foods then a soup is helpful. So i ate soup aswell. You need less energy to digest it, and you have at least a little bit in your belly. It is also very helpful after any kind of surgery, mashed vegetables or soups, just like you would do it for babymeals. For babies, elders or sick is this very helpful. If you can't eat anything else you are glad if you have this little bit. And anyways, it tastes very very good a soup is absolutely underestimated. And if you can't eat anymore with a spoon then let someone give it to you in a cup with a straw that's how i helped a few people aswell. And don't let it get to you when people laugh, look down on you or turn violent against you i know how hateful they can all turn on you. Idk what's going on with them and why they act that way. Usually is it really not much work to cook a soup or heat up one from a glass you can purchase them in every grocery store too, and a bottle of water, and thats it, that is a minimum care but everyone is flipping out.
Celery soup, broccoli soup, pumpkin soup (my personal favorite), carrot soup, and a slice of bread. That is basically what i eat. Sometimes i dont eat for a week. And even though it's since years, i do not look like a starved skeleton just saying, im generally very slim but i'm not anorexic looking.
It took me five years to figure this out. I had to dump, coffee and dark chocolate…. Even If it’s the healthy dark chocolate I had to dump that too those were causing me to be allergic to a ton of different foods because I drink coffee and ate dark chocolate on a regular basis, and I had to switch to Tea and I would completely be so tired like I was going to cry and be unable to move unless I had tea with sugar I’ve had tea without and it didn’t work tea with sugar like 32 ounces of tea with a tablespoon of sugar And I didn’t feel dead. I’ve tried keto all that other kind of stuff it did not work I had to include a small amount of sugar large amounts would make me sick with a headache but a small amount of sugar and I didn’t even have to eat until later in the day I just have to have the tea with a little bit of sugar because I normally don’t like breakfast. And it just doesn’t make me feel like I can go run a marathon, but it makes me feel functional enough to where I can take care of my family go to work,clean the house,cook and shower. I’m not saying this is for everybody because we are different but it might help one other person
Thanks for sharing what helped you. 😊 I think sometimes it is a case of experimenting to find what works best for your body.
I had to stop chocolate too! The caffeine in it made me hyper. Now I eat chocolate made with carob. It tastes similar but doesn’t have the caffeine
Yeah, the super weird thing for me was that dark chocolate and coffee were causing me to be severely carbohydrate intolerant not just gluten. I could not even eat like a normal portion like of rice or potatoes without having a major headache that lasted for three days and sometimes the headache was so bad I would be throwing up but once I got rid of the dark chocolate and the coffee I could eat normal portions of carbs (I don’t do this every night) as an example….I was able to eat a half a bagel and one cup of ice cream last night And I woke up with no allergic symptoms. No headache. Coffee and chocolate also caused binge eating to a high degree as well. It’s so weird because it did also link with CFS and the chronic fatigue as well because it was causing a bunch of different problems. I still drink caffeine, but the caffeine in tea is super different than the caffeine and coffee and dark chocolate.
Everybody that has ever had CFS we just have to create our own map and figure out what works and what doesn’t and if it doesn’t work the sooner you throw the food out the better it took me so long because I was just an addict to those two things, it was my comfort, food and drink, but it became uncomfortable😂
@@kwglasscrate2344 oh wow! That is quite unusual but I’m glad you figured out it was the coffee and dark chocolate causing it.
How about the AIP Diet or Paleo Diet ?
I found out that I’m sensitive to the Corn Protein (High Fructose Corn Syrup , Corn Starch) and Dairy Products.
@@KB-sv7fm I did Paleo for years and also SCD (a more restrictive version of paleo) and they didn’t generate any noticeable improvement. I found I felt better having some carbs in my diet.
It’s good you found out what your food sensitivities are as removing those foods should help you feel a bit better 😊
I am clinical phycologist and I spent more than 6000 hours studying Biomed and functional medicine. My son lost 80% of his autism and I my chronic fatigue minimized dramatically on gluten, dairy, soy and sugar free diet
I am glad you found something that helped both you and your son. I think diet is so important, what we put in our mouth is what is fuel our bodies
What do you put in ‘functional medicine’
Addressing things like gut infections, hormonal imbalances and poorly functioning mitochondria. Predominately with supplements but also a few dietary changes
"Functional" medicine is a type of doctor that uses alternative therapy like supplements and diet changes.
What gut testing did you FMD do? What were the results?
SIBO breath test which came back positive and a stool test which showed an overgrowth of gram negative (bad) bacteria and a parasite
What's GET physio?.
GET is graded exercise therapy. It’s when you regularly increase your activity to a set schedule. It is based on the theory that you can exercise your way out of the illness but the reality is many people with ME/CFS have been made worse by it.
Physio is physiotherapist
Let’s talk about antidepressants… since that seems to be the only way I’ve seen people heal from this…
I have tried them a couple of times. First when I got ill and again 6 years later after a big relapse. They did help with my mood (both anxiety and depression) but sadly they didn’t cure me. Have you had any success with them?
@@livingwithmecfs no Im on one and it didn’t do anything, a lot of people have cured themselves of CFS with Wellbutrin but that medication makes my anxiety a 10/10… I have literally not seen anybody cure themselves without antidepressants so I really think we should all be talking about it more. I’m about to try a different one, praying for relief….
ATP, short term - steroids
What about mercury fillings?
I don’t have any mercury fillings but I know some people choose to have them removed in case the mercury is having a negative impact on their health
Guys I seriously need help my bf no one understands according to my watch I’m not getting like any deep sleep not sure if this is due to “fight or flight” idk if I should see a holistic doctor or what to do their so expensive
Sorry to hear you are having problems with sleep. Have you tried any sleep hygiene techniques - no screens for at least an hour before bed, have your bedroom cool, blue light blocking glasses, bath before bed - if you google sleep hygiene you should find more tips
I have also found magnesium chloride to be helpful. I have done a video on it th-cam.com/users/shortsyX2kQdQjnQ4?si=pVDoZTfWTUIneIBD
I cannot read what has helped. The letters are blurred and my sight is not the best. Can someone help please?
Are you able to view the description of the video? I have listed everything I say in the video in the description with a bit more info about some of the topics
@@livingwithmecfs I cannot. However for some reason I don´t know, it is not blurred anymore. Thanks!
What high dose probiotics do you recommend?
I’ve put links to the two brands I used below. They both contain 100 billion CFU which is the strongest I’ve found. I would recommend starting at a lower dose and working up to avoid any negative side-effects
Both links go to the US retailer iHerb but I’m in France so the links may default to the French site
Natural Factors Critical Care Probiotic
fr.iherb.com/pr/natural-factors-ultimate-probiotic-critical-care-100-billion-cfu-30-vegetarian-capsules/90053?rcode=HAR9311&
Now Foods Probiotic 10
fr.iherb.com/pr/now-foods-probiotic-10-100-billion-60-veg-capsules/83679?rcode=HAR9311&
@@livingwithmecfswhat about ARMRA? I take that every day
@@pluviophile1988I haven’t tried that. Do you find it helpful?
When you say high dose probiotics, how high please?
100 billion CFU
I have determined that a bad gut microbiome will tend to kill probiotics in transit while they are running through the intestinal tract. I've also have found that taking a series of antimicrobials first, before probiotics, then the probiotics will take like they're supposed to. (Good antimicrobials are such supplements as oregano oil, black cummin seed oil, Neem oil, tea tree oil, olive leaf extract, clove, Pau d'arco, cats claw, Anamu (Guinea hen weed), marshmallow root, etc. Their are lots of good ones. Biofilm disruptors are good too. I have always considered grapefruit seed extract as a biofilm disruptor.
Which high dose probiotics did/do you take?
I used to take Critical Care 100 billion CFU by Natural Factors but after a while I found it was aggravating my histamine issues. I now take Probiota HistaminX by Seeking Health. It’s a lower dose (20 billion CFU if you take 2 capsules a day) but I have found it works better. It significantly improved my sleep and my body is generally calmer.
@@livingwithmecfsdid you try fermented foids like kefir,kombucha kimchi?
@@mariaseidi4023 years ago I tried kefir - it tasted delicious but made me bloated. I also tried making fermented vegetables but could only tolerate one or two TINY bites, anymore and it gave me 💩! Annoying because I would really like to eat fermented food rather than buy probiotics.
@@livingwithmecfs fermented foods are probiótics ,i watch a video about how asiátics consume alot of fermented food and how healthy its for your gut,i have been living from cfs for years ,always think it was depression,burnout ,well i start using kefir ( This diarreia you say its ONLY you gut cleaning itself ),1,2 weeks latter my energy levels start caming back ...i drink self made kefir every morning or you can drink it in the nigth before you go to bed ,so you Will shit all in the morning when you wake up,i ferl ligth ,i feel energetic...i belieber cfs heal by itself for same people afther same years
You have to do more meditation and to build continuity.
I meditated daily for over a year and didn’t see any improvement in my physical or mental health 🤷🏻♀️
I think it’s a case of different things work for different people. Just got to keep trying different things to find what works for you
@@livingwithmecfs How much per day? It has to be done 1-2h a day if you live a stressful life.
@@Alexxx95_H 30-60 minutes and at the time I was doing it my life wasn’t stressful at all
Which Chinese herbs?
I was given a blend of these herbs CORTEX MOUTAN, PORIA, HERBA TARAXACI, SEMEN COICIS, RADDIX REHMANNIAE. Herbalists make up a prescription of herbs specifically for you so someone else with CFS wouldn’t necessarily be given the same herbs as me.
He shou wu,( polygonum multiflorum) and yuan zhe( polygala tenuifolia) are good ones too. Their are other good ones from other parts of the world as well.
@@randallhesse5011 thanks for the tip 😃
Anti-microbials would cancel out probiotics. “Anti-microbials” sounds like a pseudoscience term applied to whatever someone is trying to sell you.
This is why the placebo effect is probably what helped you the most- because you are entirely unqualified to assess what actually helped you with any degree of objective relevance.
I used the term antimicrobials because it was not possible to list all the different products I have taken in a 30 second video. Also, people may not know the brand name of the products and what they do so antimicrobials was an easy way to explain it.
So no actual medical intervention? Just mild exercise and not putting up with assholes?
Unfortunately most of the pharmaceuticals I tried didn’t help, some supplements have been helpful, pacing and learn to prioritise my own needs and … yes…not putting up with assholes 😂
Probiotics ,fermented foods Help me also ,i See a Video about fermented foods in Asia culture ,i start using Kefir ,IT increase my vitality alot@@livingwithmecfs
What happened with the doctor ?
In the space of four months I went from being semi independent to completely bedbound unable to feed myself or wash myself! I’ve been bedbound for the last four years as a result. He didn’t understand the complexities of chronic fatigue syndrome
@@livingwithmecfswait, are you bed bound now?
@@jonprue yes I’m bed bound around 90% of the time. Thankfully I no longer feel horrendously ill 24/7 so I can do more. However I still have extreme sensitivity to light so stay in my dark bedroom most of the time
Just eat meat thats it
A gluten free diet is probably the best thing any one can do. It’s the most inflammatory food you can eat and it’s the only food if you stop eating it you will react to it when you start again. I wouldn’t touch gluten if I don’t want to get pain and inflammation back into my body 💖 Gluten has no nutritional value and I see it like Superman eating kryptonite not a great idea 💡.
All disease are inflammation why add the most inflammatory (food/grain) 😂 of them all.
This person obviously tried it and it made them worse. How dare you imply they should make their body worse. Bodies are different. Please think before offering unsolicited advice.
Their is not a alternativ medicin person in this world that recommends gluten as a food source. Its like eating cryptonite for superman.Why do you think the best professional athlete trainers in the world recommends a gluten free diet or ask a HKC practitioner what they think when the muscle test you for gluten 😆 Eat the crap if you want or Google Gluten and vagus nerve and vagal tone 😅
Saying that going gluten-free made you worse is like saying I can only eat bread and pasta and gluten containing grains as every other food source is gluten-free 😂 so the only thing that make you feel good and nourished when eaten is gluten 🤣
Caffeine is bad too
Yeh I can’t tolerate caffeine, makes me go hyper!
Duh!
A warm bath helps..
Ooo yeh, I love a good soak in the bath!