ME/CFS
Severe → somewhat betterIll 21 years before improving or writingNeeds ongoing treatment
Housebound with ME/CFS, now somewhat better with Paleo eating and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 21 years
- Last post
- Jun 2019
In their words
- Condition: ME/CFS
I have me/cfs, fibromyalgia, and Hashimoto’s Thyroiditis.
In context ↗ - At worst: Severe
I went from struggling with fog and fatigue to being housebound (and technically bed bound if I’m following my heart rate monitor and pacing).
In context ↗ - Now: Somewhat better
I still struggle with brain fog and fatigue, but now it comes as a result of over exertion, rather than being relentlessly present 24 hours a day despite rest.
In context ↗ - Began after: nothing they could name
I got sick at 13, shortly after starting the pill, though I’m not claiming it was my trigger
Read from 100 of their posts and comments; links to the 47 this page draws on
- Dec 2018
- Dec 2018
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- Nov 2018
Summary
Alpine 96446 fell ill at 13 and went 21 years without an ME/CFS diagnosis, becoming housebound after Adderall and Ambien let them push through college and a short career. Diagnosed with ME/CFS and fibromyalgia at 34, they credited Paleo eating, a higher levothyroxine dose and strict heart-rate-monitor pacing for less brain fog, fewer crashes and less hair loss. They remained mostly housebound, in bed much of the day and unable to work.
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What they tried
What they credit
Also tried
Lamotrigine· Helped a lotLevothyroxine· Helpedlying down to rest· HelpedFrankincense essential oil· Helpedraw garlic· Helpedsleep hygiene with set bed and wake times· Helpedcacao powder· HelpedLDN· Helpedsleep mask and ear plugs· Helpedfloat tank sessions· Helped · wore offcold showers· Helpedpacing with a heart rate monitor (Polar H10 and Heart Graph app)· HelpedASMR videos· HelpedValtrex· No changeantidepressants· WorseClonidine· WorsePrazosin· WorseAlesse and Depo-Provera· WorseAlesse and Depo-Provera· WorseYerba Mate· Worseenergy drinks· WorseCPAP· Worseextremely mild exercise with a trainer three times a week and daily dog walking· Much worseAdderall· Much worsetwo day class· Not saidAmbien· Not saidXanax· Not saidyoga, meditation, journaling, deep breathing· Not saidNADH injection· Not saidB12 and B6 injection· Not saidB12 and B6 injection· Not saidCBD oil· Not saidHormonal birth control (unspecified)· Not saidCannabis (THC, marijuana)· Not said
Their words about each treatment
- two day class · Not said
Yeah, I went to the two day class too.
In context ↗ - extremely mild exercise with a trainer three times a week and daily dog walking · Much worse
It was really rough and I only managed to make it five days. I started “passing out” between two and five pm everyday.
In context ↗ - Levothyroxine · Helped
I have been taking the new dosage for just ten days and feel mental clarity like I have not experienced in 21 years.
In context ↗ - antidepressants · Worse
put on a dozen antidepressants over years, none of which helped, and many of which definitely made things worse.
In context ↗ - Adderall · Much worse
I feel that it indirectly (and perhaps directly too) made me much worse because all I was doing in my case was powering through the fatigue with speed basically.
In context ↗ - Ambien · Not said
2.5 mg at noon and I couldn’t sleep at midnight, so they gave me Ambien for that.
In context ↗ - Clonidine · Worse
It seemed to really contribute to my fatigue; it gave me that slight zombie hangover feeling in the morning, and seemed like it made me a bit more sluggish during the day.
In context ↗ - Paleo diet · Helped a lot
It has made the single greatest difference for me of anything I’ve tried.
In context ↗ - Prazosin · Worse
I just tried Prazosin but it made me anxious and unhappy the next day.
In context ↗ - lying down to rest · Helped
I spent a whole day lying in bed. Within hours of waking I felt a mental clarity I hardly remembered was possible.
In context ↗ - Frankincense essential oil · Helped
Frankincense helps me relax for sleep.
In context ↗ - Xanax · Not said
Occasionally, when I’m desperate for sleep I take a tiny dose of Xanax, but my doctors prefer I not take it at all.
In context ↗ - raw garlic · Helped
The one thing I’ve found that helps tremendously is raw garlic.
In context ↗ - sleep hygiene with set bed and wake times · Helped
I find that having a set time to wake up and go to bed, and resisting naps for about a week evens me out
In context ↗ - Alesse and Depo-Provera · Worse
Birth control had wreaked havoc on my hormones, something that is not helpful for someone with me/cfs.
In context ↗ - cacao powder · Helped
I find that drinking cacAO powder (high quality Peruvian, not cocOA) can make me feel alert and happy.
In context ↗ - LDN · Helped
At this dose I’ve had zero side effects and have experienced some windows of mental clarity like I hadn’t in years.
In context ↗ - Valtrex · No change
I did some damage to my liver, without benefit.
In context ↗ - yoga, meditation, journaling, deep breathing · Not said
For me, my issues were way beyond that, and I do those things in addition to medication.
In context ↗ - Lamotrigine · Helped a lot
I was prescribed Lamotrigine by a neuropsychiatrist. All of my extreme mood symptoms are gone and somehow I haven’t had any side effects
In context ↗ - NADH injection · Not said
I’ve been on a weekly NADH/B12,B6 shot for about six weeks. I’m not sure if I feel any effect yet
In context ↗ - Yerba Mate · Worse
I thought Yerba Mate was a great way to push through whatever was wrong with me, but I eventually realized I was just in a steady caffeine high, and I paid for it dearly afterward.
In context ↗ - sleep mask and ear plugs · Helped
I’ve found a sleep mask and ear plugs to be extremely helpful.
In context ↗ - float tank sessions · Helped
I felt great after the first one, but it only lasted a few hours. The two after didn’t give me that same effect.
In context ↗ - cold showers · Helped
I did it to try to boost my energy in the moment. It’s invigorating.
In context ↗ - pacing with a heart rate monitor (Polar H10 and Heart Graph app) · Helped
I’ve just started pacing with a heart rate monitor and have had some hours of clarity here and there that I hadn’t experienced since before I got sick
In context ↗ - energy drinks · Worse
it pains me to think of how many energy drinks I used to down at work to stay alive
In context ↗ - CPAP · Worse
I wore one for a time when I was incorrectly diagnosed with sleep apnea. It was super uncomfortable
In context ↗ - CBD oil · Not said
Heating pad, CBD oil, dark chocolate, period panties
In context ↗ - ASMR videos · Helped
Now I use them to fall asleep and throughout the day to get my heart rate down.
In context ↗ - Cannabis (THC, marijuana) · Not said
I had a seriously, seriously not fun time on edibles, and paid for it for days after
In context ↗
Approaches: Diet
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 21 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 13 | symptoms began in childhoodMy symptoms also started very young (13)In context ↗ | Not stated | |
| before diagnosis, after pushing through college and a career | crashed to housebound after powering through college and a short career on stimulantsI went from struggling with fog and fatigue to being housebound (and technically bed bound if I’m following my heart rate monitor and pacing).In context ↗ | Severe | |
| about 2012 | paleo diet, after a four-week crash, gave the biggest gain of anything triedIt has made the single greatest difference for me of anything I’ve tried.In context ↗ | Not stated | Elimination diets (other) |
| September 2018 | levothyroxine raised from 50 to 75 mcg; major drop in brain fog, hair stopped falling outI have been taking the new dosage for just ten days and feel mental clarity like I have not experienced in 21 years.In context ↗ | Severe | Levothyroxine (Synthroid) |
| October 2018 | found that lying down to rest, unlike sitting on the couch, lifted the fogresting lying down is benefiting me in a way that resting sitting up is notIn context ↗ | Severe | Pacing and the energy envelope |
| February 2019 | heart-rate-monitor pacing cut crashes and brought windows of clarityI start to have awesome windows where the brain fog lifts and I feel greatIn context ↗ | Severe | Pacing and the energy envelope |
| June 2019 | months of strict pacing in bed left her baseline unchanged; no good daysI’ve been trying pretty strict pacing for a few months (in bed, with the exception of being driven to a couple doctors’ appointments), but it hasn’t really improved my baseline, at least not yet.In context ↗ | Severe |
Adverse events
- Everyday exercise and activity“It was really rough and I only managed to make it five days. I started “passing out” between two and five pm everyday.” In context ↗ Made symptoms worse
- Levothyroxine (Synthroid)“I tried going to 100mcg to see if I could get more of a good thing and I did not feel so good; I stopped after one day.” In context ↗ Side effects
- Clonidine“It seemed to really contribute to my fatigue; it gave me that slight zombie hangover feeling in the morning, and seemed like it made me a bit more sluggish during the day.” In context ↗ Side effects
- Amphetamine salts (Adderall)“I feel that it indirectly (and perhaps directly too) made me much worse because all I was doing in my case was powering through the fatigue with speed basically.” In context ↗ Made symptoms worse
- Amphetamine salts (Adderall)“2.5 mg at noon and I couldn’t sleep at midnight, so they gave me Ambien for that.” In context ↗ Insomnia from treatment
- Antidepressants (unspecified)“I was misdiagnosed too, and put on a dozen antidepressants over years, none of which helped, and many of which definitely made things worse.” In context ↗ Made symptoms worse
- Elimination diets (other)“When I switched to a Paleo diet, I crashed for a little over 4 weeks. A worsening of fatigue and brain fog.” In context ↗ Made symptoms worse
- Prazosin (Minipress)“I just tried Prazosin but it made me anxious and unhappy the next day.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“It knocked me out, like a drugged feeling, not just drowsiness. Also headache/heavy head and nausea.” In context ↗ Side effects
- Low-dose naltrexone“I gave up at 4 because that added anxiety and really messed up sleep. During the day it knocked me out and at night it kept me waking up over and over.” In context ↗ Insomnia from treatment
- Low-dose naltrexone“I gave up at 3mg because I started getting a pounding heart and anxiety and nightmares.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“I started getting a pounding heart and anxiety and nightmares” In context ↗ Heart rhythm problems
- Low-dose naltrexone“I’ve been on LDN for 12 days and I feel flu-y. Headaches, drowsiness, nausea.” In context ↗ Side effects
- Low-dose naltrexone“I’m trying to lower it, take a break, and start over, but coming off it quickly is even worse.” In context ↗ Withdrawal problems
- Valtrex / valacyclovir“there is nothing on their side effects list that addresses it, and I did some damage to my liver, without benefit.” In context ↗ Liver or kidney problems
- Hormonal birth control (unspecified)“Birth control had wreaked havoc on my hormones, something that is not helpful for someone with me/cfs.” In context ↗ Side effects
- Progestin-only birth control (mini pill, implant or shot)“when I finally stopped it after two years, I had a period for six months straight” In context ↗ Withdrawal problems
- CPAP and sleep apnoea treatment“I wore one for a time when I was incorrectly diagnosed with sleep apnea. It was super uncomfortable” In context ↗ Side effects
- Cannabis (THC, marijuana)“I had a seriously, seriously not fun time on edibles, and paid for it for days after” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I’m by no means all better, I stay mostly at home and PEM is rough
In context ↗ - Brain fog
I still struggle with brain fog and fatigue
In context ↗ - POTS & dysautonomia
It’s also how I realized I have POTS, which was confirmed at the doctor today.
In context ↗ - Mast cell (MCAS) & allergies
I have a lot of food sensitivities and have the best luck when I vary my intake where possible.
In context ↗ - Sleep problems
I had trauma as a child and had severe night terrors for about a year, and sleep disturbances ever since.
In context ↗ - Pain & fibromyalgia
I have a very weak grip and pain (like a dull ache in my bones) after trying to open something.
In context ↗ - Headaches & migraine
I get horrible headaches, fog, and fatigue, with no digestive symptoms
In context ↗ - Gut problems
I’m struggling with nausea and no appetite too.
In context ↗ - Heart symptoms & palpitations
mainly heart racing and palpitations that would last a week
In context ↗ - Muscle weakness
I have a very weak grip
In context ↗ - Anxiety & low mood
I think I have a bit of that now, because our symptoms are depressing!
In context ↗ - Temperature regulation
I can’t seem to stay comfortable with any one temperature through the night.
In context ↗ - Hair loss
I lost a disturbing amount of hair every day until I recently upped my thyroid medication.
In context ↗
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