Living with ME CFS
Treatments for ME Chronic Fatigue Syndrome #shorts
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 YouTube and Instagram
View the videos here
https://bit.ly/livingwithmecfs
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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
I’m better when I’m not eating gluten. Much worse if I am eating gluten.
Adaptogenic herbs, ionic liquid minerals, Dr Wilson's adrenal program, mahikari light energy, multi vitamins. Spore based prebiotic. All helped 🙏✨️
Which probiotics can you suggest?
Medicating my comorbid pots has made the biggest difference, I take ivabradine and mestinon but different things work for different people. Keeping track of my heart rate with a watch has helped a lot with pacing. Ubiquinol and NADH supplements as well.
Being kind to myself and building on the relationship with myself has helped
Have any of you been exposed to carbon monoxide or natural gas leaking from your boiler. ? The alarm does not go off till ots deadly at 50ppm. But all these symptoms we have are at 10 to 50pm . Just a thought
Try a parasites cleanse kefir
Dr Lam made me worse too! Funny I was just thinking about him this morning. He would take $250 per phone call and the phone call literally went: "keep doing what you're doing and buy my yoga DVD" THAT WAS IT – my pocket was £250 lighter. Plus all of his recommendations for copious amounts of vitamin C and oxalate ridden almonds set me back. The carnivore diet has helped me. It seems I react badly to every plant that there is. I saw a difference within 2 weeks.
A prescription med that's helped me a lot is potassium. My blood tests always showed i was a little dehydrated. Taking potassium is a big boost for me.
High dose probiotics, high raw diet, garlic, sunshine, definitely help me. Chocolate and supplements maybe the placebo effect. Things that make it worse are pressure from others, mold, depression and anxiety,
I've also noticed the role that grief plays in it. Some days, I shut myself in my room due to the lack of energy to even communicate with others, but if I make an effort to casually meet a friend I definitely notice a shift in both energy and grief
Healthy keto was amazing for a year, but it's not helping anymore 😢
Why would going gluten free make it worse? I get in the short term, but not long term I wouldn't of thought.
it’s so interesting the variations in what does and doesn’t work for people. I’ve experienced too that once I hit perimenopause it was a whole other ballgame , like stuff I was doing before that helped me like acupuncture now don’t work or are way way too overstimulating now and make me worse! Ive been severe for 5 years and finally seeing some improvements here is what has helped me:
integrative medicine (meds, lifestyle and natural modalities ) medsLDN, guanfacine, mestinonlifestyle- gluten free diet, eating lots of soil grown local vegetables, forcing myself to eat more often and more protein)
-pregnenolone topical hormone, wow deep sleep every night, no more insomnia or nightmares or night sweats. miracle
-magnesium and salt pills
-sequential compression boots for POTS (amazing)
-Pacing with Visible Arm band (the data on this has helped me understand my crash patterns and it also makes setting boundaries way easier when you are a habitual “push through it “ person like i am
-medical qi gong, the first year I just lied there visualizing moving. now 3 years later I’m able to do 2 hour long classes a week and can usually stand the entire time. if i’m in a crash i go back to visualizing or seated version
-flower essences have had a huge impact on my symptom severity believe it or not
—energy medicine has made major shifts happen
-finding a therapist with experience working with chronic illness population. huge difference.
made me worse:also tapping, and eft, pushing to heal with such desperation that i actually was stressing myself out so much , almost every supplement and herb and vitamin makes me overstimulated or very off and weird/depressed. therapy or any dr that doesn’t know about Me/cfs. it’s just exhausting. they judge you as negative and neurotic and push you too hard. not helpful.
Never being without having a trusted friend to talk to at night over the phone.
Breathing techniques is one thing i could confidently say helped me
the probiotic part is interesting
My heads going to explode from all the thibgs iv tried over the years and all the podcasts of recovery stories. Im completely don tryi g to figure it all out. Im 8 years into the hell of cfs/me. It is so awful to lie with…my main symptoms still are crippling fatigue, PEM, insomnia, sleep disturbances to unrefeshing sleep brain fog cant think properly. Never give up….turn to Jesus and follow Jesus teachings. Im trusting in Gods timing for my healing as iv tryed so hard doing everything recommended and im still stuck. Godbless everyone going through this…again never give up.
Nothing has helped me. It's literally killing me 😢
If you're coming from a deficit or a bad diet any improvement on these will work wonders. If you are already doing that then nothing works, for me, nothing. Just living with optimism
And hope. One day….. time, maybe…
Spending time in nature helped me.
Camping, sleeping in a tent, walking in the woods, the beach, etc
Ivermectin helped me.
What made me worse :IV vitamins , nutrients, and IV ozone
Age 46. NP got me on licorice root extract and a simple maca root supplement and off the other 20 supplements. Spent 3/4 of my life most of it suffering from debilitating fatigue. Also CPTSD was underneath it a too. Addressing trauma was key snd i now take a low dose of antidepressants which i resisted because i felt it would make me feel worse. i was wrong. it helped. I also did 3 months of biweekly intensive ketamine nasal spray. GF keto diet helps and no sugar is a must. I had a spinal fusion at age 13 and I was never the same after that. I'm terrified of all vaccines and people think I'm crazy but I don't care. You gotta do you in this life… i'm greatly concerned for the children who are being harmed by all the toxic chemicals in our environment. I took claraton d 12 hr for decades bc it gave me a chance at the day, but caused insomnia. i finally detoxed from that and sleep is so much better. also alcohol is a big no. THC/cbn daily at 4 pm in a 5mg gummy is a game changer too. god i sound screwed up, but it's all true.
Hyperbaric oxygen chamber helped me most. And warm steaming saunas
Nicotine patches, electrolytes, naps, de warming
I’m curious how gluten free foods would have a negative impact. I learned recently that gluten is detrimental to my well being and I’m doing much better without it but I’m not sure what I would be looking for in terms of it making things worse…
Echinace ACE 4 a day, multi B vitamins 2 a day and incremin kids iron supplement . Water-jogging, rest and positive thinking.❤
TENS unit
Speed
Short naps
Terrifying close calls
Emergencies You're in the middle of
Gluten free made you worse?
True
Excruciating short
What severity of ME/CFS do you have? And have you tried the Keto diet? Curious!
Moving out of a moldy house got me from barely able to take care of myself to somewhat functional but I pay for activity with PEM. So from almost completely bed ridden to being able to do small chores get my groceries, cook my meals. No where near normal or pre illness. 29 years and counting. Got sick at 37. I highly suspect pesticides and chemicals caused the mold reactivity and other symptoms I still have to this day but that doesn't explain why this condition is so common so maybe it is some type of post viral illness. There has been a rash of brain retraining recovery stories most of them are trying to profit off of or have an agenda so I don't believe any of them but anything is possible.
Things that helped……
protein shake diet.
CBD vape.
Painkillers.
Compression garments.
Spirinula
many breads are enriched with niacin. maybe that is why the gluten-free diet made you worse
Exercise makes it FAR worse, orher things that have not helped: functional medicine, acupuncture, diet changes of any kind (keto put me in the hospital), reiki, all manner of traditional and energy medicine. What has helped: EFT, meditation, more rest, more rest, more rest. Just shows everyone is different.
‘Enforcing Boundaries’ an absolute must do! #smallcircle