ME/CFS
Moderate → no benefitIll for 4 years
ME/CFS with fainting and sleepiness, no improvement after 12 weeks of physical therapy
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 4 years
- Last post
- Aug 2020
In their words
- Condition: ME/CFS
and confirmed the diagnsis of CFS
In context ↗ - At worst: Moderate
then I would need to rest the remainer of the day
In context ↗ - Now: No benefit
I surrendered to the idea that I had CFS and was going to find no answers with continued testing
In context ↗ - Began after: a bacterial or tick-borne infection
I had both a an ear infection and a abcess tooth in the month of Feburary
Summary
Horizon 28246 fell ill in July 2016, aged 36, after repeated ear infections and an abscessed tooth. They had fainting spells, aching legs, heat intolerance and daily daytime sleepiness, and were later diagnosed with CFS/ME. Twelve weeks of physical therapy brought no improvement apart from faster recovery from the exercises themselves, and low iron and vitamin D led to supplement advice. Antidepressants only helped after genesite testing found one that worked. Four years on they still had daytime sleepiness and had accepted the diagnosis.
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What they tried
Also tried
anti depressant· Helpedear tube· Helped · wore offTinopasty· Helpedphysical therapy· Worseoral antibodics and antibodic ear drops· Not saidvitimin D· Not saidmedications for my leg pain Anotrypline being one of them· Not saidcounciling· Not saidtreatment for my alcoholism· Not saidstimulent· Not said
Their words about each treatment
- oral antibodics and antibodic ear drops · Not said
I do recall oral antibodics and antibodic ear drops
In context ↗ - vitimin D · Not said
suggested increasing my daily IU's to 5000( was taking 2000 before)
In context ↗ - anti depressant · Helped
I had no luck with antidepressants until I had genesite testing done by my sleep doctor.
In context ↗ - ear tube · Helped
The ENT put a tube in my ear which stopped the infections until the tube got plugged and I needed a 2nd tube about 9 month after the first was put in.
In context ↗ - medications for my leg pain Anotrypline being one of them · Not said
tried me on about 3 different medications for my leg pain Anotrypline being one of them
In context ↗ - physical therapy · Worse
The physical therapy when it started killed me for the first few weeks, I left my body was dead so to speak, then I would need to rest the remainer of the day.
In context ↗ - Tinopasty · Helped
I elected to have a Tinopasty in March as my eardrum became retracted and I hope it would also reduce infections, so far 5 months later no ear infections.
In context ↗ - counciling · Not said
I also started counciling for that substance abuse and anxiety I had my whole life.
In context ↗ - treatment for my alcoholism · Not said
Since then I sought treatment for my alcoholism
In context ↗ - stimulent · Not said
They performed the test prior to prescribing me a stimulent
In context ↗
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 |
|---|---|---|
| July 2016 | fell ill with extreme weakness and spells of energy being drained, after a heat wave at their factory jobThen in mid July I felt extremely weak and worn outIn context ↗ | |
| autumn 2016 | aching legs, pass-out spells and a third ear infection while waiting months for testssince I was unable to anything until then I started researchingIn context ↗ | |
| — | crashed in the first weeks of a 12-week physical therapy course over tarsal tunnelThe physical therapy when it started killed me for the first few weeks, I left my body was dead so to speak, then I would need to rest the remainer of the day.In context ↗ | |
| end of the 12 weeks of physical therapy | recovered quicker from the exercises, though still exhausted for a few hours afterwardstowards the end I was just exhausted for a 3 to 4 hours after, then my normal nap would put me back to my normal(CFS normal) stateIn context ↗ | Physical therapy / physiotherapy |
| August 2020 | still had daily daytime sleepiness, heat intolerance and night sweats, CFS unchangedI have and had heat intolenance and excessive sweating comes and goesIn context ↗ |
Adverse events
- Antidepressants (unspecified), Amitriptyline (Elavil)“I had a bad reaction to the first anti depressant so I ended up switching to another after about a month” In context ↗ Side effects
- Antidepressants (unspecified), Amitriptyline (Elavil)“So issues like daytime sleepyness and ED were major problems for me with my antidepressants.” In context ↗ Side effects
- Physical therapy / physiotherapy“The physical therapy when it started killed me for the first few weeks, I left my body was dead so to speak, then I would need to rest the remainer of the day.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Muscle weakness
I felt extremely weak and worn out
In context ↗ - POTS & dysautonomia
I felt horrible like I was going to pass out or die
In context ↗ - Pain & fibromyalgia
my thighs would ache, then my ankles, and the backside of my calves
In context ↗ - Sleep problems
daytime sleepyness which was another daily symptom
In context ↗ - Temperature regulation
I have and had heat intolenance and excessive sweating comes and goes
In context ↗ - Anxiety & low mood
anxiety I had my whole life
In context ↗ - Post-exertional malaise
The physical therapy when it started killed me for the first few weeks
In context ↗