Housebound with ME/CFS, somewhat better with low-carb eating and a walking aid
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 11 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I am in my forties and have mild to moderate CFS.
In context ↗ - At worst: Severe
I was spending most of my week in bed and basically housebound
In context ↗ - Now: Somewhat better
I describe myself as housebound but can go out for dog walks a few times a week. I cannot walk anywhere without some sort of aid
In context ↗ - Began after: another virus
an actual cold virus took me out
In context ↗
Read from 28 of their posts and comments; links to the 24 this page draws on
Summary
They had ME/CFS for about a decade after a cold virus took them out, moving between bed bound and housebound after a cold in 2020. Low-carb eating stopped their post-meal crashes, a walking aid helped them walk further, and topiramate ended their migraines. They remained housebound with short dog walks a few times a week, and later developed severe IBS, needing a low-FODMAP diet.
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What they tried
What they credit
Also tried
Their words about each treatment
- medication from the CFS clinic · Helped
I took the meds and ignored the exercise. ... the meds were no longer helping with pain
In context ↗ - swimming · Helped
The water helps with my burning skin and the arthritis like pain in my joints
In context ↗ - mint tea · Helped
I find mint tea helps with the nausea.
In context ↗ - Keto (low carb) · Helped
I am trying Keto (low carb). ... I no longer have mini crashes after eating.
In context ↗ - electrolyte tablet · Not said
Lots of water and I added a electrolyte tablet to my usual vitamin regime.
In context ↗ - sauna · No change
I usually spend time in a sauna when I go swimming. ... It doesn't really help
In context ↗ - vitamin B and Borocca C · Helped
I take all of the above and vitamin b, all the b's? ... I found that vitamins do not make me better but I do feel worse after a few weeks of not taking them.
In context ↗ - Hypershell exoskeleton · Helped
It did help me walk a little further especially uphill and upstairs.
In context ↗ - duloxetine (duloxatine) · Helped
I am on 60mg duloxatine for the cfs pain. ... It stops the muscle, joint pain and the burning skin.
In context ↗ - topiramate · Helped a lot
have recently tried Topiramate. ... It is brilliant no more migraine.
In context ↗ - Game Boy / Tetris · Helped
my husband bought an old game boy for the tree of us in the family. ... It helps us all when we need calming down.
In context ↗ - amitriptyline · Worse
Of all the meds I've taken for the neurological pain amitriptyline has been the least affective for the shortest time with the worst side affects.
In context ↗ - Huel · Helped
Causes smelly farts for me but I find it satisfies my hunger, gets me my nutrition and helps maintain my weight.
In context ↗ - beta blocker · Helped
I take a low dose beta blocker which helps the palpitations.
In context ↗ - pain killers · Not said
I'm not so tired because I'm not taking as many pain killers
In context ↗ - occipital nerve block · Helped
I've just had the nerve block last week. ... It really has already helped with severe tension headaches
In context ↗ - sumatriptan · Helped
I take Topiramate as a preventative and sumatriptan for attacks. ... Works well for me for migraines
In context ↗ - pregabalin · Helped
the first time I took pregabalin worked well except for the vertigo side affect.
In context ↗ - FODMAP diet · Not said
Now I have to eat homemade ... on the FODMAP diet trying to find my triggers
In context ↗ - COVID vaccination as treatment · Not said
The reaction to the first shot was awful for about 2 days.
In context ↗
Approaches: Diet · Other drugs and medicines
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. The first step with a time is 5.5 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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
| When | What happened | Where they were |
|---|---|---|
| about 2015 | illness began after a cold virusan actual cold virus took me outIn context ↗ | Not stated |
| — | bed bound at their worstI have been bed bound, house bound, mild.,moderate and severe.In context ↗ | Severe |
| 2020 | caught a cold after a good phase and went back to days in bedthen the kids went back to school and I caught a cold. Can't seem to get back to that level now spending days in bedIn context ↗ | Severe |
| 2021-10-05 | back to mild to moderate CFS, swimming on good days and using mobility aidsI am in my forties and have mild to moderate CFS.In context ↗ | Moderate |
| 2022-09-08 | low-carb eating stopped mini crashes after mealsI no longer have mini crashes after eating.In context ↗ | Moderate |
| 2025-04-26 | better phase, out of bed most of the week and walking a little; exoskeleton let them walk furtherI was in a better phase and able to walk a little bit and was now spending most of the week out of bed.In context ↗ | Moderate |
| 2025-11-17 | occipital nerve block eased severe tension headachesIt really has already helped with severe tension headachesIn context ↗ | Moderate |
| 2026-10-28 | housebound but short dog walks a few times a week; recently developed very severe IBShave recently developed very severe IBS. Now I have to eat homemade as on the FODMAP diet trying to find my triggers.In context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“The reaction to the first shot was awful for about 2 days.” In context ↗ Side effects
- Keto and low-carb diets“I tried full keto but found after a month that my energy levels were really low but constant” In context ↗ Made symptoms worse
- Duloxetine (Cymbalta)“eventually my body adjusts and I get dizzy spells and have to come off it” In context ↗ Side effects
- Amitriptyline (Elavil)“Of all the meds I've taken for the neurological pain amitriptyline has been the least affective for the shortest time with the worst side affects.” In context ↗ Side effects
- Hypershell exoskeleton“I started out wearing it lower on my hips but that does put pressure on my lower back so had to move it to my waist.” In context ↗ Made symptoms worse
- Pregabalin (Lyrica)“the first time I took pregabalin worked well except for the vertigo side affect” In context ↗ Side effects
- Pregabalin (Lyrica)“My emotions went haywire weaning off it and that was with medical help. I had actual intrusive thoughts and that is against my nature.” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I also over the years get to a point where I am feeling good ... aaaand then I crash
In context ↗ - Pain & fibromyalgia
helps with my burning skin and the arthritis like pain in my joints
In context ↗ - Neuropathy & tingling
my skin burns ice cold and I get the ants feeling
In context ↗ - Headaches & migraine
I take Topiramate as a preventative and sumatriptan for attacks.
In context ↗ - Gut problems
have recently developed very severe IBS
In context ↗ - POTS & dysautonomia
dizzy spells I had been experiencing for over six months
In context ↗ - Heart symptoms & palpitations
I take a low dose beta blocker which helps the palpitations
In context ↗ - Flu-like symptoms
I would say I felt like I was coming down with a bad cold and then after a day or so rest I would be totally fine.
In context ↗ - Light & noise sensitivity
Sensory input causes crashes for me not just exertion and exercise.
In context ↗
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