Bedbound with long COVID, now much better with low-FODMAP diet and propranolol

Condition: Long COVID
At worst: Severe (mostly bedbound)
Ill before improving or writing: 2.5 years
Last post: Oct 2026

In their words

Condition: Long COVIDEver-changing symptoms. Started with fatigue in 2020, went to pots, dysphagia, gastroparesis, asthma, anorexia(from pain), paresthesia, sensory overload, tmjd, dysautonomia. In context ↗
At worst: Severefor the first two years when I was more bed bound I went through 200 books In context ↗
Now: Much betterBelieve it or not it's still better than year 2022, I wasn't sure I was even going to make it. In context ↗
Began after: COVIDMy first infection was early 2020 (pre vaccine) and reinfection was January 2023.

Read from 73 of their posts and comments; links to the 47 this page draws on

Summary

Gull 53387 caught COVID in early 2020; fatigue cascaded into POTS, gastroparesis, MCAS, dysphagia and, after a January 2023 reinfection, sensory overload and paresthesia. She was bed-bound about two years and fell to 93 lbs. Low-FODMAP eating with betaine HCl, then propranolol and birth control left her roughly 80% improved, walking ten minutes and doing chores, with flares still; nadolol and midodrine were added later for fatigue/PEM/dizziness.

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What they tried

What they credit

propanolol· Helped a lot · main betaine HCl· Helped low fodmap diet· Helped Reglan· Helped Airsupra· Helped

Also tried

Zyrtec and Claritin· Helped · wore off Zyrtec and Claritin· Helped · wore off Azelastine nasal spray· Helped Singulair· Helped bentyl· Helped nadolol· Helped midodrine· Helped low dose estrogen birth control pills· Helped Calm magnesium citrate powder· Helpedsteroid inhaler (Alvesco)· HelpedPulmicort· Helped sensory overload yoga routine· Helped ice cubes / ice to neck· Helped ginger candies, ginger tea, peppermint drops· Helped ginger candies, ginger tea, peppermint drops· HelpedHalls menthol drops· Helpedcompression socks and electrolyte drinks· Helped compression socks and electrolyte drinks· Helped Ibuprofen· Helped Aspirin· Helped acetaminophen· Helped Ensure drinks· Helped coconut yogurt and fermented pickles· Helped famotidine· Worse Mary Ruth liquid iron· Worse Albuterol· Worse pelvic floor therapy· Worse PPIs· Much worse Flonase· Not said motegrity· Not said Citrucel· Not saidBenefiber and Miralax· Not saidshakers exercise and larynx massage· Not saidpectin lozenge· Not saidBiotene mouthwash and Xylimelts· Not saidortho device· Not said humming· Not said Hormonal birth control (unspecified)· Not said

Their words about each treatment

Zyrtec and Claritin · HelpedIn the beginning of long covid, Zyrtec and Claritin did help me lessen the symptoms to be livable In context ↗
Azelastine nasal spray · HelpedI feel like Azelastine works good when I need something stronger. In context ↗
Flonase · Not saidI have since moved to only Flonase since both the other antihistamines were giving me neurological symptoms and drying me out. In context ↗
Singulair · HelpedI did use Singulair at my worst of MCAS flares to help clear it. In context ↗
famotidine · WorseWhen I took famotidine I had drop to the floor abdominal pain. I was in bed for days. In context ↗
PPIs · Much worseI was prescribed three ppi and they all gave me severe stomach pain. In context ↗
bentyl · HelpedMy doctor prescribed bentyl which I only use when I have nausea, cramps, or extreme bloating because of the wooziness I get. In context ↗
betaine HCl · HelpedI started taking 3 betaine hcl before each meal for 2 weeks In context ↗
low fodmap diet · HelpedI did the low fodmap diet which was a step process of elimination to find out what I react to. In context ↗
Reglan · HelpedReglan helped clear and move my stomach. In context ↗
motegrity · Not saidput on motegrity for the esophagus and gastroparesis so hoping my body can endure the side effects In context ↗
propanolol · Helped a lotmy crashes would involve neurology issues and trouble swallowing and they've diminished by so much now with propanolol In context ↗
nadolol · HelpedPropranolol, midodrine, nadolol(switched to this instead of propranolol) In context ↗
midodrine · HelpedMidodrine is 2.5mg 3x a day. In context ↗
low dose estrogen birth control pills · Helpednow I skip it with low dose estrogen birth control pills. That helped me gain about 3 lbs. In context ↗
Mary Ruth liquid iron · WorseI used Mary Ruth liquid iron every other day. In context ↗
Calm magnesium citrate powder · HelpedI use Calm brand magnesium citrate powder to keep things moving In context ↗
Citrucel · Not saidI take citrucel to make sure I didn't become constipated with iron In context ↗
Benefiber and Miralax · Not saidAnd I do benefiber, miralax, or citrucel to help constipation In context ↗
steroid inhaler (Alvesco) · HelpedTook a year for me to get a steroid inhaler and I was on it for 6 months. In context ↗
Pulmicort · HelpedI've been using Pulmicort for allergy and exercise induced asthma these last few months and it's happening less often. In context ↗
Airsupra · Helpedemergency was switched to airsupra ... I can definitely feel it working better In context ↗
Albuterol · WorseAlbuterol does make me the most jittery though. In context ↗
sensory overload yoga routine · Helpedthe only thing that helped was doing a sensory overload yoga routine from YouTube In context ↗
ice cubes / ice to neck · Helpedputting ice cubes on parts of my body In context ↗
shakers exercise and larynx massage · Not saidI do shakers exercise and larynx massage when it feels very weak In context ↗
ginger candies, ginger tea, peppermint drops · HelpedGingin candies, yogi ginger tea, tummy drops peppermint In context ↗
Halls menthol drops · HelpedHalls menthol drops with 7.5mg of menthol helps open up my throat when I have a reaction In context ↗
pectin lozenge · Not saidI use pectin lozenge to clear my throat after meals. In context ↗
Biotene mouthwash and Xylimelts · Not saidI brush my tongue, use biotene mouthwash, use xylimelts to help with dry mouth. In context ↗
compression socks and electrolyte drinks · Helpedcompression socks and electrolyte drink mixes ... Those two things helped me In context ↗
Ibuprofen · HelpedIbuprofen helps most of the time when neurology issues kick in. In context ↗
Aspirin · HelpedAspirin helps me. In context ↗
acetaminophen · Helpedsometimes taking acetaminophen will tone the intrusive thoughts and overstimulation In context ↗
Ensure drinks · HelpedTo maintain weight when I couldn't get any food down I was taking ensure drinks. In context ↗
coconut yogurt and fermented pickles · HelpedI try to eat 2 ounces coconut yogurt or two lightly fermented pickle chips to help my stomach daily In context ↗
pelvic floor therapy · WorseThe exercises at this point kick my ass and they really are simple stretches. In context ↗
ortho device · Not saidI just had sleep study too and went with ortho device since mine is mild In context ↗
humming · Not saidhumming to stimulate the vagus nerve In context ↗
Hormonal birth control (unspecified) · Not saidIt took about two months for side effects to subside, but I have always been sensitive to any medication. In context ↗

Approaches: Beta-blockers · Diet · Other drugs and medicines · Supplements

Their path

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

When	What happened	Where they were	After
early 2020	COVID infection, fatigue beganMy first infection was early 2020 (pre vaccine) ... Started with fatigue in 2020	Mild
late 2021	symptoms cascaded into POTS, dysphagia, gastroparesisThen late 2021 it kind of just cascaded into all these issues. In context ↗	Moderate
2022	bed-bound for about two years, weight fell to 93 lbsbetter than 2022 when my two year bed bound period began In context ↗	Severe
2022-2023	could eat again and gained weight backWas down to 93 lbs last year, due to the inability to eat without getting full immediately or feeling pain, and now I'm up to 103. In context ↗	Severe	Low-FODMAP diet
January 2023	reinfection brought sensory overload, skin burning and tinglingMy second infection happened in 2023. That's when my neurological issues started that week. In context ↗	Severe
summer 2023	crashed after a 20 minute walk in the heatI did 20 minutes last year and had heat exhaustion and this set me back. In context ↗	Moderate
October 2023	improved to about 80%, sweating and weight back, fewer dizzy spellsI would say I feel like I have improved to about 80%. In context ↗	Mild
June 2025	wheelchair prescribed, nadolol and midodrine started, doing more house choresStill at 105lbs but better than 2022 when my two year bed bound period began. In context ↗	Moderate
October 2026	still flaring but gained back 22 of the 43 lbs lostCovid triggered my connective tissue disorder so all the issues will not go away 100% for me but I did gain back 22 lbs out of the 43 I lost. In context ↗	Moderate

Adverse events

Montelukast / Singulair“I use singulair sparingly during flares because it dries me out.” In context ↗ Side effects
Famotidine (Pepcid)“Gastro kept prescribing me different H2 blockers and the pain would drop me to the ground, I considered emergency care each time.” In context ↗ Made symptoms worse
Cetirizine (Zyrtec), Loratadine (Claritin), Azelastine (Astepro)“These can also dry you out enough to cause issues swallowing.” In context ↗ Side effects
Dicyclomine (Bentyl)“My doctor prescribed bentyl which I only use when I have nausea, cramps, or extreme bloating because of the wooziness I get.” In context ↗ Side effects
Proton pump inhibitors (unspecified)“ppi(2 separate types) left me in debilitating pain.” In context ↗ Made symptoms worse
Iron infusion / ferritin repletion“When taking pill forms my stomach couldn't handle it.” In context ↗ Gut side effects
Hormonal birth control (unspecified)“It took about two months for side effects to subside, but I have always been sensitive to any medication.” In context ↗ Side effects
Betaine HCl“I stopped betaine when I felt more pressure from gas.” In context ↗ Gut side effects
Famotidine (Pepcid)“When I took famotidine I had drop to the floor abdominal pain. I was in bed for days.” In context ↗ Gut side effects
Cetirizine (Zyrtec), Loratadine (Claritin), Azelastine (Astepro)“both the other antihistamines were giving me neurological symptoms and drying me out.” In context ↗ Side effects
Compression garments“I've tried Sockwell and they're very hard to get off my feet and I get pain in my big toes.” In context ↗ Other
Iron infusion / ferritin repletion“I have to stop every once in awhile because it gives me a gastroparesis flare.” In context ↗ Gut side effects
Loratadine (Claritin)“Claritin triggers the intrusive thoughts so now I only do nasal sprays” In context ↗ Mood or psychiatric effects
“Those other brands I mentioned previously were keeping me too full to eat three meals a day.” In context ↗ Gut side effects
Albuterol / salbutamol (Ventolin)“Albuterol does make me the most jittery though.” In context ↗ Side effects
Probiotics and fermented foods“If I have too much I get an acidic feeling stomach.” In context ↗ Gut side effects
Hormonal birth control (unspecified)“my jaw and teeth had severe pain several times a month and once I stopped birth control the pain went away” In context ↗ Side effects
Pelvic floor physical therapy“The exercises at this point kick my ass and they really are simple stretches. Feels like I ran a 5k the next day.” In context ↗ Made symptoms worse
Propranolol (Inderal)“With Propranolol I did have a month of more severe fatigue.” In context ↗ Side effects

Symptoms mentioned

Anxiety & low mood Brain fog Breathlessness Gut problems Hair loss Heart symptoms & palpitations Light & noise sensitivity Mast cell (MCAS) & allergies Muscle weakness Neuropathy & tingling POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems Temperature regulation

Their words about their symptoms

Post-exertional malaiseIf I do too much I'll get pem In context ↗
Brain fogdysphagia, brain fog, paresthesia, pem, joint pain, tmjd In context ↗
POTS & dysautonomiaI was diagnosed with pots In context ↗
Mast cell (MCAS) & allergiesDiagnosed with mild esophageal dysmotility, gastroparesis and mcas In context ↗
Sleep problemsI've been having acid reflux that floods my lungs so I can't sleep till 5 am In context ↗
Pain & fibromyalgiaAfter getting on propanolol I've had less joint pain In context ↗
Gut problemsnausea, bloating, trapped gas, abdominal pain, sternum pain and pressure In context ↗
Light & noise sensitivityMy sensory overload involves skin tingling(severe feels like fire) light and noise. In context ↗
BreathlessnessCurrent symptoms I get are fatigue, tingling sensation, shortness of breath, pots, MCAS in flares. In context ↗
Heart symptoms & palpitationsMy heart rate was getting from 140-170 doing chores In context ↗
Muscle weaknessphysical therapist approved it based on my weakness, shortness of breath, pem In context ↗
Neuropathy & tinglingIt felt like my skin was on fire, crawling sensation and pins and needles. In context ↗
Anxiety & low moodMy intrusive thoughts will be self harm but I've never done it before. In context ↗
Temperature regulationYes have heat intolerance/pots/Dysautonomia post covid. In context ↗
Hair lossI've had hair loss too since 2020 but my hair was so thick no one has noticed In context ↗

Bedbound with long COVID, now much better with low-FODMAP diet and propranolol

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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What they credit

Also tried

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Adverse events

Symptoms mentioned

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