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ME/CFS Severe → somewhat betterIll 13 years before improving or writing

Severe ME/CFS, somewhat better after naturopath and food allergy elimination

Pond 95525 on RedditLast post Mar 2026

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill before improving or writing
13 years
Last post
Mar 2026
In their words
  • Condition: ME/CFSI've had CFS and insomnia for years In context ↗
  • At worst: SevereI'm pretty much bed bound and can't do much. In context ↗
  • Now: Somewhat betterEventually, it started to improve, but very slowly. In context ↗
  • Began after: nothing they could nameI honestly don't know what triggered the onset. I didn't have the usual viral infection that most people seem to get right before they get sick.
Read from 99 of their posts and comments; links to the 40 this page draws on

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Summary

Pond 95525 fell ill with severe ME/CFS at 24 in 2013; after three years a naturopath helped somewhat, and eliminating food allergies improved her to a moderate, pacing-managed level, and she worked from home. COVID in January 2023 worsened everything: bedbound, then severe, with POTS, insomnia and numbness. By 15 months the numbness and burning were worsening, with no recovery described.

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What they tried

What they credit

gluten-free, soy-free, and dairy-free diet· Helped · maingluten-free, soy-free, and dairy-free diet· Helped · mainpacing· Helped

Also tried

naturopath· Helpedosteopathic practitioner· Helpedself help course for panic attacks· Helpedmagnesium bisglycinate· Helpedelectrolyte powders, extra salt and compression stockings· Helpedelectrolyte powders, extra salt and compression stockings· Helpedyoga nidra· Helpedlow histamine diet· Helped · wore offvitamin D3 drops· No changephysical therapy· Worseanti anxiety medication· Worseprobiotics and fermented foods· Worsepassion flower supplements· Worseapple cider vinegar (ACV)· Worseiron supplement· WorseB vitamins· Worsebisoprolol· Worsestretching· WorseGABA supplement· Much worsemelatonin· Much worsechiropractor· Much worseAdvil· Not saidtylenol· Not saidzinc· Not said
Their words about each treatment
  • naturopath · HelpedI had a naturopath that helped me a bit with adrenal fatigue, but I never returned to my old "normal". In context ↗
  • gluten-free, soy-free, and dairy-free diet · HelpedI had a bunch of food allergies that I cut out and improved, like at least 40%, which was major for me. In context ↗
  • pacing · HelpedI was at a level that I could manage with pacing. In context ↗
  • physical therapy · WorseI couldn't tolerate physical therapy, I found the exercises too much, and they would cause me to crash. In context ↗
  • osteopathic practitioner · HelpedShe helped me immensely with hip/lower back pain that I would get from walking. In context ↗
  • anti anxiety medication · Worsemy CFS and PEM symptoms that I've had for 10yrs are psychosomatic and should resolve with anti anxiety medication (trust me, I've tried in the past, made everything worse for me) In context ↗
  • self help course for panic attacks · HelpedIn the past( many, many years ago) I did a self help course for panic attacks and it helped me In context ↗
  • probiotics and fermented foods · WorseI can't take probiotics or fermented foods, just makes it worse. In context ↗
  • passion flower supplements · WorseI've also tried passion flower supplements in the past but, they gave me very weird side effects, I felt terrible. In context ↗
  • Advil · Not saidmy periods are very heavy and usually leave me curled up, crying in pain despite taking Advil In context ↗
  • apple cider vinegar (ACV) · WorseIn the past I used to take ACV in the morning before meals but it made my hypoglycemia worse. In context ↗
  • tylenol · Not saidand that's with taking tylenol to lower it. It would lower to like 38.9°C for a couple hours and then go back up to 40. In context ↗
  • iron supplement · WorseI've tried so many iron supplements, and they're all messing up my gut. In context ↗
  • vitamin D3 drops · No changeI've been supplementing with D3 but haven't noticed any improvements yet. In context ↗
  • magnesium bisglycinate · HelpedI find it helps with the night time calf cramps but I'm struggling so badly with insomnia as well. In context ↗
  • zinc · Not saidI've been taking vitamin d3 drops, magnesium bisglycinate, sometimes zinc In context ↗
  • B vitamins · WorseI am unable to tolerate any of my regular supplements I used to take, like iron, B vitamins In context ↗
  • electrolyte powders, extra salt and compression stockings · HelpedI've been upping my electrolyte intake as well. It helps a bit sometimes. In context ↗
  • yoga nidra · HelpedI've been trying to do yoga nidra to relax my nervous system it helps some days but when I'm experiencing insomnia related flares it's not really helping. In context ↗
  • GABA supplement · Much worseMy throat and arm went numb within minutes, and then my entire body went completely numb. In context ↗
  • low histamine diet · HelpedI've been doing low histamine diet, it helps a bit but I'm still very symptomatic. In context ↗
  • bisoprolol · WorseI tried a beta blocker for the high HR which gave me horrible symptoms (low BP, and pretty bad chest tightness, coughing, and dizzyness) so I had to stop. In context ↗
  • melatonin · Much worseI tried melatonin last week for sleep, and my entire throat and upper body went numb In context ↗
  • stretching · WorseI tried stretching, but the sensation got even worse. In context ↗
  • chiropractor · Much worseLast month I went to a chiro to see if they could help. After a few sessions my symptoms got so much worse. In context ↗

Approaches: Diet · Pacing

Their path

Very severeSevereModerateMildNear normalRecoveredonset3 y6 y9 y12 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. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
2013ME/CFS onset, severe from the startthe fatigue and PEM crashes hit me like a ton of bricks in 2013. I literally was severe. In context ↗Severe
after the first 3 yearsimproved with a naturopath and cutting out food allergiesI got well enough to be able to get out of bed and do light activities & go for walks etc. In context ↗Moderate
before covidsettled at a pacing-managed level, ran own business from home, travelledI was at a level that I could manage with pacing. I still wasnt able to work a traditional job, so I started my own business and worked from home. In context ↗MildPacing and the energy envelope
March 2023quick decline after covid, mostly houseboundI especially noticed a quick decline in March. I'm pretty much housebound and cant do any household chores, even showering is wiping me out. In context ↗Severe
May 2023bedbound after crashing from a 20-second speed walkIn May I became bedbound and can no longer do the most simplest of tasks. In context ↗Severe
July-September 2023a few ok weeks, able to get up and go to the mallI Even managed to go to the mall and walk around a few times. In context ↗Severe
September 2023flared back to mostly bed/couch boundBut now, at 9 months, I'm back to mostly bed/couch bound. In context ↗Severe
March 2024worse than ever with new symptoms and insomniaI'm 14 months in, and worse than ever. In context ↗Severe
March 2025symptoms much worse after chiropractor sessionsAfter a few sessions my symptoms got so much worse. In context ↗Severe
February 2026slow improvement after 18 months barely able to sit up, built up time uprightEventually, it started to improve, but very slowly. ... Eventually I started being able to walk around more. In context ↗ModeratePacing and the energy envelope
March 2026still has numbness, tingling and spreading burning flaresI seem to have numbness and tingling most of the time and then I get flares of the burning neuropathy pain In context ↗Moderate

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogBreathlessnessGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLoss of smell or tasteMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
  • Post-exertional malaiseI feel like I've been in a never ending PEM also and Im not even doing anything. In context ↗
  • Brain fogEven though I forget what I learned in like 2 seconds, lol In context ↗
  • POTS & dysautonomiaI do have POTS (my hr goes to 150/160 just walking to the washroom) In context ↗
  • Mast cell (MCAS) & allergiesI eat a very clean anti inflammatory diet as i have a ton of food sensitivities. In context ↗
  • Sleep problemsI've had CFS and insomnia for years. In context ↗
  • Pain & fibromyalgiaI'm also having really bad bone pains. In context ↗
  • Headaches & migraineI get a head on fire, concussion type of feeling that makes me feel so sick. In context ↗
  • Gut problemsHave ibs, gastritis and chronic diarrhea. In context ↗
  • BreathlessnessEven breathing feels like a lot of work. In context ↗
  • Heart symptoms & palpitationsI also have pacs and pvcs that have gotten so bad. In context ↗
  • Neuropathy & tinglingmy whole body went numb and I've lost sensation in the trunk of my body In context ↗
  • Anxiety & low moodI'm really struggling with the anxiety and panic attack In context ↗
  • Loss of smell or tasteI lost my sense of smell day 5. It came back but very weak at 8 weeks. In context ↗
  • Temperature regulationI keep getting adrenaline dumps, waking up in a panic, night sweats, with tremors and shakiness. In context ↗
  • Hair lossmy hair started falling out like crazy In context ↗

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