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ME/CFS Very severe → somewhat betterIll 18 years before improving or writingNeeds ongoing treatment

ME/CFS with vomiting, feeding tubes and PEM, now somewhat better with pacing and cannabis

Plover 72859 on RedditLast post Jun 2026

Condition
ME/CFS
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
18 years
Last post
Jun 2026
In their words
  • Condition: ME/CFSI have ME/CFS and was diagnosed with CCI (craniocervical instability) this year. In context ↗
  • At worst: Very severeBy the time I was diagnosed, I had severe ME/CFS and by the time of surgery I was very severe. In context ↗
  • Now: Somewhat betterNow it's a litter grayer as I've regained some abilities but still need to spend a significant amount of time in bed or on the couch. In context ↗
  • Began after: glandular fever or EBVMono caused my cfs but every single virus I caught absolutely laid me out for weeks
Read from 228 of their posts and comments; links to the 52 this page draws on

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Summary

Plover 72859 fell ill at 12 after mono in 2006/7 and was diagnosed with ME/CFS at the Mayo Clinic in 2019 after about a year of vomiting and weight loss that required feeding tubes. Pacing, aggressive rest, cannabis, B12 injections and saline helped only partly; by late 2024 they described themselves as severe, with PEM and POTS.

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What they tried

What they credit

strict pacing· Helped a lot · mainnasojejunal feeding tube· Helped a lotcromolyn sodium· Helped a lotoxycodone· Helped a lotoccipital-cervical fusion C0-C2· Helped a lot · mainhydrocortisone· Helped a lotmasking· Helpedaggressive rest· Helped · mainsoft cervical collar· HelpedPepcid· HelpedNaturDAO and Enzymedica Digest Gold· Helpedcontinuous mini pill· Helped

Also tried

B12 injections· Helped a lotphysical therapy on cervical spine with dry needling· HelpedAmitriptyline· Helpedstrict sleep schedule and bedtime routine· Helpedcannabis (THC and CBD)· Helpedmobility aids (cane, rollator, manual and power wheelchair)· Helpedsaline infusions· Helpedsurgery preparation protocol· HelpedBotox· HelpedAimovig· Helped · wore offSumatriptan· HelpedZavzpret nasal spray· Helpedmeditation, yoga nidra and breathwork· Helpednadolol· HelpedBuspirone· HelpedZofran (ondansetron)· HelpedFDgard· Helpedtizanidine· Helpedcupping· Helpedhot baths· HelpedKate Farms meal replacement shakes· HelpedParkinson's drug for CCI episodes· HelpedEmgality and Ajovy· No changeEmgality and Ajovy· No changeVyepti· No changelow-dose naltrexone· No changevarious diets· No changeMayo Clinic ME/CFS & Fibro clinic· WorseTrauma Release Technique (TRE)· Worseanti-epileptic for CCI episodes· WorseIUD (hormonal or copper)· WorseSavella· Much worseOTC abortives (Excedrin, Advil migraine)· Not saidfunctional neurologist· Not saidVisible app with Polar Verity Sense· Not saidsleep herbs· Not saidMidodrine· Not saidEsomeprazole· Not saidH1 antihistamines (Claritin, Zyrtec, Xyzal)· Not saidH1 antihistamines (Claritin, Zyrtec, Xyzal)· Not saidH1 antihistamines (Claritin, Zyrtec, Xyzal)· Not saidvitamin C and zinc carnosine· Not saidcollagen· Not saidvitamin D and vitamin K· Not saidashwagandha· Not saidred light lamp· Not saidbone growth stimulator· Not said
Their words about each treatment
  • Savella · Much worseStarted it for fibromyalgia, ended up in a year and a half vomiting cycle, lost 80lbs in 10 months and needed a feeding tube In context ↗
  • physical therapy on cervical spine with dry needling · Helpedphysical therapy for my cervical spine 1-2x a week where my pt works on the muscles and does dry needling (I find this to be the most helpful thing we do) In context ↗
  • Amitriptyline · HelpedI take amitriptilyne at night for sleep (I maxed out on it for headaches but couldn't wean off it without my sleep disturbances causing crashes so I still take 25mg just for sleeping) In context ↗
  • strict sleep schedule and bedtime routine · HelpedGetting into a fairly strict sleep schedule has helped me wake up easier in the mornings In context ↗
  • cannabis (THC and CBD) · HelpedI find cannabis mostly helps to regulate my nervous system and that makes the fatigue less awful In context ↗
  • B12 injections · Helped a lotNow I get less of that burst of energy but feel absolutely horrible if I skip a dose. In context ↗
  • strict pacing · Helped a lotSo far strict pacing, utilizing mobility aids and making every task easier on myself has been the most helpful. In context ↗
  • masking · HelpedI haven't caught a single thing since 2019 (I do stay home way more compared to the average person and that helps too) and 100% attribute it to my masking In context ↗
  • nasojejunal feeding tube · Helped a lotThe feeding tube absolutely helped so much and I had a tiny bit of energy. In context ↗
  • Mayo Clinic ME/CFS & Fibro clinic · WorseI got my diagnosis (not very clearly) and attended the ME/CFS & Fibro clinic and it had some interesting information but was mostly very harmful. In context ↗
  • mobility aids (cane, rollator, manual and power wheelchair) · HelpedWith a power chair, I go into PEM way less In context ↗
  • saline infusions · HelpedSaline makes such a huge difference for me. Dropped my migraines by 24% and I feel significantly worse if I skip them In context ↗
  • surgery preparation protocol · HelpedMy doctor had me drink gatorade the night before and morning of, I was hooked up to fluids in pre-op In context ↗
  • Botox · HelpedBotox every 3 months (brought me down by 50%) In context ↗
  • Aimovig · HelpedAimovig worked for about 1-1.5 years and i had to stop when it stopped working completely. In context ↗
  • Emgality and Ajovy · No changeall the injectables options (aimovig, emgality, ajovy) without much success In context ↗
  • Vyepti · No changeI also trialed Vyepti but it wasnt successful for me (though no side effects!!) In context ↗
  • Sumatriptan · HelpedSumatriptan kinda helped, the nasal spray is infinitely better than the pills In context ↗
  • Zavzpret nasal spray · Helpednot as nasty as zavzpret which I just recently tried and found helpful In context ↗
  • OTC abortives (Excedrin, Advil migraine) · Not saidotc excedrin or sumatriptan but they often don't work In context ↗
  • functional neurologist · Not saidThe functional neurologist was able to point me in the direction of getting an official POTS diagnosis and that was significant to my care but I can't think of anything he did that helped long term. In context ↗
  • low-dose naltrexone · No changeSeveral years ago but I didn't feel any effect. I titrated up to 4mg and was on that for 4-5 months. In context ↗
  • Visible app with Polar Verity Sense · Not saidI'm trying out the Visible app with the polar verity sense tracker. I'm not sure how helpful it is yet but I see a lot of potential In context ↗
  • aggressive rest · HelpedBut then around the 3 month mark, I started noticing improvements. I got into rest much more quickly, my symptoms started leveling out In context ↗
  • meditation, yoga nidra and breathwork · HelpedI found I like doing breathwork and it can help lower my heart rate when I do it at the beginning of rests In context ↗
  • sleep herbs · Not saidI actually slept really well last night but that might be the new sleep herbs I started taking In context ↗
  • soft cervical collar · Helpedonce I started wearing a cervical collar, watching the position of my head, and focusing on keeping my traps relaxed In context ↗
  • Midodrine · Not saiddespite 10mg (twice my usual dose) my BP was still below 100/70 In context ↗
  • nadolol · HelpedNadolol - stopped me vomiting first thing every morning and after showers (prescribed when diagnosed with POTS) In context ↗
  • Buspirone · HelpedBuspirone - take at mealtimes and it helps with the pain in my digestive tract In context ↗
  • Esomeprazole · Not saidEsomeprazole - for acid reflux In context ↗
  • Zofran (ondansetron) · HelpedZofran - antinausea, mostly prevents me from vomiting (I've been stuck on this for years now though and it's not ideal) In context ↗
  • FDgard · HelpedFDgard - taken at meals, it's basically peppermint oil but it does something because the second I cut back on it my symptoms start returning In context ↗
  • tizanidine · HelpedI regularly take tizanidine for muscle spasms, same dose. In context ↗
  • cupping · HelpedCupping (for muscle tension during a migraine) In context ↗
  • hot baths · HelpedHot baths have always been helpful too (but this can speed up the migraine and cause it to intensify at first) In context ↗
  • various diets · No changeI've tried a lot of diets but so far none have made a lasting difference to my symptoms. In context ↗
  • cromolyn sodium · Helped a lotCromolyn sodium has been such a game changer for me. I went from picking at meals for 2 hours to eating my meals all at once. In context ↗
  • H1 antihistamines (Claritin, Zyrtec, Xyzal) · Not saidI also take h1 + h2 blockers, vit c, zinc carnosine, and 2 types of enzymes with food. In context ↗
  • Pepcid · HelpedI'd say pepcid (h2), cromolyn sodium, and the enzymes make the most difference. In context ↗
  • NaturDAO and Enzymedica Digest Gold · HelpedNaturDAO helps me eat more but Enzymedica Digest Gold makes me goooo. In context ↗
  • vitamin C and zinc carnosine · Not saidvit c, zinc carnosine, and 2 types of enzymes with food In context ↗
  • collagen · Not saidcollagen (for EDS and growing back my hair after a bad bout of malnutrition) In context ↗
  • vitamin D and vitamin K · Not saidvitamin K (to take with vit d) In context ↗
  • ashwagandha · Not saidrecently started ashwaganda but not sure it's making any difference In context ↗
  • continuous mini pill · Helpedhas significantly reduced the negative effects of my luteal phase In context ↗
  • oxycodone · Helped a lotoxycodone greatly reduced, delayed, or eliminated PEM as long as I took it every day In context ↗
  • red light lamp · Not saidI was advised to try it for my me/cfs. It's not a super affordable option but if it's in either of your budgets, it does feel really nice In context ↗
  • Kate Farms meal replacement shakes · HelpedKate farms are lifesavers if you can afford them In context ↗
  • Trauma Release Technique (TRE) · WorseHowever, it did cause PEM for me, which is probably related to my CCI. In context ↗
  • anti-epileptic for CCI episodes · WorseI ended up being allergic to the anti-epeleptic In context ↗
  • Parkinson's drug for CCI episodes · Helpedsaw some success with the Parkinsons drug In context ↗
  • occipital-cervical fusion C0-C2 · Helped a lotFor the first time in a long, long time, I can stand up and walk around without feeling like I'm going to pass out or fall over the entire time. In context ↗
  • hydrocortisone · Helped a lotI've also started hydrocortisone as my specialist wants to address a possible adrenaline insufficiency. I'm not up to the full dose but it already feels like it's helping. In context ↗
  • bone growth stimulator · Not saidI've also been using a bone growth stimulator daily (yay for insurance coming through). In context ↗
  • IUD (hormonal or copper) · WorseI tried Mirena and rejected it and it sent me to the ER two days in a row where I had to get it removed. In context ↗

Approaches: Craniocervical surgery · H2 blockers · Antihistamines & MCAS · Diet · Hormones & thyroid · Other drugs and medicines · Pacing · Radical rest · Sex hormones

Their path

Very severeSevereModerateMildNear normalRecovered14 y15 y16 y17 y18 y19 y

How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 13.1 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
2006mono at age 12; fatigue symptoms beganGot mono in 6th grade when I was around 12 (2006/7) In context ↗Not stated
2019uncontrollable vomiting and 40% weight loss; NJ feeding tube; diagnosed with ME/CFS at Mayo ClinicI lost 40% of my bodyweight in 10 months back in 2019 In context ↗Severe
2024-07moderate, mostly homebound, sometimes bedbound; pacing and mobility aids most helpfulI would place myself in the moderate category, mostly homebound, sometimes bedbound in the colder months In context ↗ModeratePacing and the energy envelope
2024-11declined into the severe categoryI'm now in the severe category In context ↗Severe
2024-12about three months into aggressive rest, thresholds and symptoms started levelling outBut then around the 3 month mark, I started noticing improvements. In context ↗SevereRadical rest
2025-08very severe and 90% bedbound after travel for CCI surgeryFour months ago I was 90% bedbound, only able to walk to and from the bathroom with assistance and sit in a recliner for some meals. In context ↗Very severe
2025-09C0-C2 fusion; out of daily CCI episodes, walked further than in a year, no post-surgical PEMit was almost instant after surgery that I was back into severe In context ↗SevereCraniocervical fusion / tethered cord
2025-12housebound apart from appointments, sometimes bedbound, hobbies back, still gets PEMI've gotten a few hobbies back, mainly knitting, writing, and TV. In context ↗SevereCraniocervical fusion / tethered cord

Adverse events

Symptoms mentioned

Brain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityLoss of smell or tasteMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
  • Post-exertional malaiseI still get PEM, especially from common triggers like disrupted sleep In context ↗
  • Brain fogMemory recall is much better but there are still memory gaps In context ↗
  • POTS & dysautonomiaI still have POTS but my symptoms have improved a lot even though my heart rate seemed worse In context ↗
  • Mast cell (MCAS) & allergiesI have MCAS which I'm on multiple medications for In context ↗
  • Sleep problemsI still require medication to help me stay asleep during the night In context ↗
  • Pain & fibromyalgiamy fibro pain will go through the roof In context ↗
  • Headaches & migraineI still have daily headaches and get migraines but they aren't nearly as debilitating as before In context ↗
  • Gut problemsMy GI symptoms are actually what led to me finally getting a diagnosis. In context ↗
  • Light & noise sensitivityOnly recently been able to tolerate some daylight but blackout darkness is so much better symptom wise In context ↗
  • Heart symptoms & palpitationsPalpitations or other POTS symptoms In context ↗
  • Muscle weaknessCrashes for me look like significant fatigue and muscle weakness In context ↗
  • Neuropathy & tinglingit also helps some of my nerve pain which i think contributes to my fatigue In context ↗
  • Flu-like symptomsit's like waking up with the flu, even my voice gets scratchy In context ↗
  • Temperature regulationInability to regulate temperature In context ↗
  • Vision problemsI still have some swelling in my neck and occasionally it causes blurry vision In context ↗
  • Loss of smell or tasteFood used to randomly taste like dirt or mold and that hasn't happened since I started treatment. In context ↗

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