ME/CFS
Moderate → somewhat betterIll 3 years before improving or writing
ME/CFS crash left her winded by a coat; somewhat better with rest and salt
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Mar 2024
In their words
- Condition: ME/CFS
The lack of improvement from the hydroxychloroquine led to the diagnosis of me/cfs
In context ↗ - At worst: Moderate
I took 2.5 months off. I laid down a lot! Slept whenever I needs.
In context ↗ - Now: Somewhat better
I credit my partial recovery to taking rest very seriously
In context ↗ - Began after: a bacterial or tick-borne infection
I see the clamydia that boyfriend gave me and subsequent pelvic infection it caused in conjunction with my IUD, followed by two pelvic surgeries, as either causing my me/cfs, or continuing to it.
Read from 101 of their posts and comments; links to the 43 this page draws on
- Aug 2023
- Jun 2023
- Jun 2023
- Feb 2023
- Mar 2024
- Feb 2023
- Mar 2023
- Feb 2023
- Feb 2024
- Jul 2023
- Feb 2023
- Feb 2023
- Aug 2023
- Mar 2023
- Aug 2023
- Mar 2023
- Mar 2023
- Feb 2024
- Apr 2023
- May 2023
- Apr 2023
- Aug 2023
- Aug 2023
- Jun 2023
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- Nov 2023
- Nov 2023
- Feb 2024
- Feb 2024
- Nov 2023
- Jun 2023
- Aug 2023
- Sep 2023
- Aug 2023
- Apr 2023
- Feb 2024
- Mar 2024
- Nov 2023
Summary
After fatigue that worsened during lockdown, she crashed badly in February 2023 and spent 2.5 months off work, winded by putting on a coat. She credited disciplined rest, salt, electrolytes and compression garments with a partial recovery, and was also on LDN and other medications; she was back full time from home by June 2023. She stayed crash-free for months by keeping under 3,000 steps a day, though she still felt limited and low; by early 2024 she reported a general decline and higher heart rate.
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What they tried
What they credit
LDN· Helpedsalt, salt tablets, electrolytes and compression garments· Helped · mainsalt, salt tablets, electrolytes and compression garments· Helped · mainwhole foods, gluten-free, no refined sugar diet· Helpedwhole foods, gluten-free, no refined sugar diet· Helpedwhole foods, gluten-free, no refined sugar diet· Helpedrest / time off work· Helped · mainamyltriptaline· Helpedzero gravity chair· HelpedNAD+· Helpedacceptance· Helpedhoney· Helpedpacing (steps under 3k)· Helped
Also tried
continuous use birth control· Helped a lotCPAP· Helped · wore offnarcolepsy medicine· Helpedibuprofen· Helpedcannabis· Helpedgabapentin· Helped · wore offdry brushing· Helpedspecial mouth guard· Helpedhydroxychloroquine / plaquenel· Helpedwinter swimming and cold plunge· Helpedmetoprolo· Helpedbreathwork (triangle breathing)· HelpedMidodrine· Helpedtrazedone· No changeveneflexine· No changevaltrex· No changetwo thyroid meds· No changeCBD oil· No changecreatine· WorseXanax· Not saidtramadone· Not saidmigraine injection· Not saidrowing machine and floor-based core exercises (PT)· Not saidvitamins and minerals· Not saidcymbalta / duloxatene· Not saidmelatonin· Not saidCoQ10· Not saidintermittent fasting· Not saidIUD (hormonal or copper)· Not said
Their words about each treatment
- CPAP · Helped
I got a CPAP a few years ago after years of other insomnia treatments and when that no longer made me restful
In context ↗ - narcolepsy medicine · Helped
I recently started on a narcolepsy medicine, which only brings me to a baseline functional.
In context ↗ - trazedone · No change
Trazodone is a good sleep aid. It just didn't work for me.
In context ↗ - Xanax · Not said
I'm petrified and taking Xanax for the panic.
In context ↗ - ibuprofen · Helped
If I wake up at night I immediately take two ibuprofen. works amazing for me.
In context ↗ - tramadone · Not said
I also have tramadone, a sedative indica cannabis and last night the solution was finally gabapentin.
In context ↗ - cannabis · Helped
I'm a big cannabis user, for both pain releif and escapism
In context ↗ - gabapentin · Helped
I love gabapentin! I take it for sleep, unfortunately whatever dosage I'm on it wanes in effectiveness
In context ↗ - dry brushing · Helped
I find dry brushing my whole body before bed therapeutic.
In context ↗ - veneflexine · No change
For me veneflexine is neither helping or making it worse.
In context ↗ - continuous use birth control · Helped a lot
It took a long time to find the right type for me, but it was a game changer for me and bonus, no period!
In context ↗ - special mouth guard · Helped
I wear a special mouth guard which has really helped my migraines
In context ↗ - LDN · Helped
Other contributors, in no particular order are, whole foods, LDN, amyltriptaline, adequate rest, electrolytes, compression clothing, the zero gravity chair.
In context ↗ - migraine injection · Not said
I'm due for my migraine injection tomorrow and I always have a few migraines and additional emotions the week before my injection.
In context ↗ - hydroxychloroquine / plaquenel · Helped
Since starting hydroxychloroquine those symptoms have lessened quite a bit.
In context ↗ - rowing machine and floor-based core exercises (PT) · Not said
I also recently started PT and I'm using my rowing machine (carefully) but I'm not yet finding a correlation to effort on the rowing machine with any decline the following day.
In context ↗ - winter swimming and cold plunge · Helped
I was able to hot and cold plunge twice this week!
In context ↗ - valtrex · No change
I'm on daily valtrex and have been for years, and I'm my worst ever.
In context ↗ - salt, salt tablets, electrolytes and compression garments · Helped
I credit my partial recovery to disciplined resting, salt, salt tablets, electrolytes and compression garments.
In context ↗ - metoprolo · Helped
I've been taking metoprolo mostly for my comfort by reducing the palpitations.
In context ↗ - whole foods, gluten-free, no refined sugar diet · Helped
I don't eat gluten, it irritates my autoimmune stuff. I cut sugar to almost zero for the same reason.
In context ↗ - vitamins and minerals · Not said
I'm also on LDN, cymbalta, hydroxychloroquine, two thyroid meds and a whole host of vitamin and minerals and supplements
In context ↗ - cymbalta / duloxatene · Not said
I also started LDN shortly after my crash, duloxatene and some supplements.
In context ↗ - two thyroid meds · No change
I don't think it's doing anything for me
In context ↗ - rest / time off work · Helped
I took 2.5 months off. I laid down a lot! Slept whenever I needs. Watched about 3 horror movies a day and got high. It helped so much!
In context ↗ - creatine · Worse
Creatine makes me sick to my stomach
In context ↗ - amyltriptaline · Helped
Amyltriptaline is helping me with sleep. I feel much more rested since starting it
In context ↗ - zero gravity chair · Helped
adequate rest, electrolytes, compression clothing, the zero gravity chair.
In context ↗ - melatonin · Not said
I use melatonin and amyltriptaline and sometimes ibuprofen.
In context ↗ - NAD+ · Helped
I started it, a bottle from Amazon, and it seems to be helping
In context ↗ - CoQ10 · Not said
I take this one too. Not sure if it helps, but I take it anyways.
In context ↗ - breathwork (triangle breathing) · Helped
I do about 20 minutes a night and since starting a couple weeks ago breathing overall feels so much more effective. I have less air hunger
In context ↗ - acceptance · Helped
The most improvement I've made is through acceptance.
In context ↗ - honey · Helped
I thought honey was helping me, even included mention of it in a recent post
In context ↗ - Midodrine · Helped
Midodrine! It has helped me mentally so much.
In context ↗ - CBD oil · No change
Man. I wish CBD oil helped me!
In context ↗ - intermittent fasting · Not said
I do intermittent fasting and I eat from 7:30-3.
In context ↗ - pacing (steps under 3k) · Helped
I mostly credit, without much science, not walking more than 3k steps a day
In context ↗ - IUD (hormonal or copper) · Not said
When I had the mirena I had like a non-stop spotting and I still got pmdd.
In context ↗
Approaches: CBT & mindset · POTS medication · Diet · Pacing · Radical rest · Supplements · Tricyclic antidepressants
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2020 | fatigue returned during lockdown and kept worseningI stayed to get really tired again during the lock down ... Things only continued to get worse.In context ↗ | |
| 2023-02 | major crash after daily winter swimming; off work 2.5 months on disabilityI'm also experiencing my worst crash ... Yesterday putting on my coat winded meIn context ↗ | |
| 2023-04-25 | crashed after cutting calories on a Paleo-style dietI've had many pretty good days eating like this until yesterday I started to crashIn context ↗ | |
| 2023-05-08 | returned to work after 2+ months on disability and completed a full shiftI completed a full shift of work today!In context ↗ | Pacing and the energy envelope |
| 2023-11-20 | stable for two weeks, no significant crash in months, keeping under 3,000 steps a dayI've been feeling emotionally and physically stable for like two weeks!In context ↗ | Pacing and the energy envelope |
| 2024-02-18 | decline after her parents left her alone; stopped adding salt to watergenerally I've been in decline since my parents left me aloneIn context ↗ | |
| 2024-03-19 | still mostly shitty, heart rate higher after stopping metoprololI feel the same, mostly shitty.In context ↗ |
Adverse events
- Creatine“Creatine makes me sick to my stomach” In context ↗ Gut side effects
- Cannabis (THC, marijuana)“It increases muscle weakness and fatigue while I'm high” In context ↗ Made symptoms worse
- IUD (hormonal or copper)“When I had the mirena I had like a non-stop spotting and I still got pmdd.” In context ↗ Side effects
- Amitriptyline (Elavil)“Just bumped up to 30mg a few days ago and my mood has totally crashed. Thinking about killing myself now than usual.” In context ↗ Suicidal thoughts or attempt
Symptoms mentioned
Anxiety & low moodBreathlessnessFlu-like symptomsHeart symptoms & palpitationsMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I have definitely had PEM symptoms, cold/flu/fatigue in response to efforts
In context ↗ - POTS & dysautonomia
I have so many dysautonomia symptoms
In context ↗ - Sleep problems
for me when I'm in a crash, as I am now, I wake up at night, go to the bathroom, then can't fall back to sleep because of the pain
In context ↗ - Muscle weakness
I've never experienced such muscle fatigue
In context ↗ - Breathlessness
I have less air hunger
In context ↗ - Heart symptoms & palpitations
I've been on metoprolo for years for a heart palpitation
In context ↗ - Anxiety & low mood
I get really low and contemplate suicide
In context ↗ - Flu-like symptoms
the sore throat/cold symptoms were from the Sjorgrens
In context ↗
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