ME/CFS
Moderate → somewhat betterIll 9 years before improving or writingNeeds ongoing treatment
Unable to work for nine years with ME/CFS, now somewhat better on midodrine and Mestinon
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 9 years
- Last post
- Aug 2017
In their words
- Condition: ME/CFS
I've had cfs for 9 years after getting sick when I was 18 with a flu like illness.
In context ↗ - At worst: Moderate
I had to fail at jobs embarrassingly
In context ↗ - Now: Somewhat better
I'm definitely not cured at the moment, just improved.
In context ↗ - Began after: another virus
getting sick when I was 18 with a flu like illness
Read from 112 of their posts and comments; links to the 57 this page draws on
- May 2015
- Jun 2015
- May 2015
- Jun 2015
- Jun 2015
- Mar 2016
- Nov 2015
- May 2017
- May 2015
- Jul 2015
- Jun 2016
- Aug 2016
- Jan 2016
- Dec 2014
- Jun 2015
- Sep 2015
- Aug 2015
- Jun 2015
- Aug 2015
- Aug 2016
- Jun 2016
- Aug 2015
- Nov 2015
- Jul 2016
- Apr 2016
- Jan 2016
- Dec 2015
- Jan 2016
- Aug 2015
- Jul 2017
- Apr 2017
- Jun 2016
- Sep 2016
- May 2017
- Aug 2017
- Jul 2017
- Mar 2017
- Feb 2017
- Mar 2017
- Jun 2016
- Feb 2016
- Feb 2017
- Jul 2016
- Sep 2015
- Apr 2015
- Oct 2016
- Jan 2016
- Feb 2016
- Apr 2016
- Dec 2014
- Sep 2015
- Nov 2015
- Dec 2015
- Oct 2015
- May 2015
- Jun 2017
- Aug 2016
Summary
Fell ill at 18 with a flu-like illness and spent about nine years unable to work, with brain fog, migraines, neck pain and PEM. Treating the illness as dysautonomia, he credited midodrine and Mestinon with 40-50% less fatigue and brain fog, enough for an eight-hour wedding, to work at least part-time and about five minutes of recumbent biking, though he still crashed easily and was not working.
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What they tried
What they credit
Also tried
Pepcid· Helped a lotvisualisation· Helped a lotProzac· Helped · wore offAtivan· Helpedbed elevation· HelpedNasonex· HelpedAzelastine· HelpedD-Ribose· Helped · wore offcyclobenzaprine· Helpedmood leveler· Helpedmushroom supplement (reishi, maitake)· Helpeddaily stretches· Helpedchiropractor· Helped · wore offCBT· Helpedquercetin· Helpedminocycline· Helpedmilk thistle· HelpedAciphex· Helpedblack tea· HelpedAdvil· Helpedhigh-fat high-calorie meal· Helped · wore offshort cold showers· Helpedantibiotics (Lyme)· No changeValcyte· No changeGabapentin· No changeOxytocin· No changeNimotop· No changeLamictal· No changeBaclofen· No changecannabis· No changeosteopathic manipulation· No changeFlonase· No changesaline infusions· No changeAdderall· WorseKetamine· Worseweightlifting· Worsebeta blockers· Worsenortriptyline· WorseMDMA· Not saidswimming· Not saiddesmopressin· Not saidvitamin D· Not said
Their words about each treatment
- antibiotics (Lyme) · No change
In the end I wasted 3 years taking abx that had 0 effect
In context ↗ - Valcyte · No change
I took Valcyte for 15 months, no response
In context ↗ - Prozac · Helped
it certainly helped me ignore my fatigue more, and I believe it may actually cut in to it a bit
In context ↗ - Adderall · Worse
adderall gives me the most insane crashes and I can't eat on it
In context ↗ - Ketamine · Worse
I didn't really notice my symptoms as much, but it was unpleasant being dissociative
In context ↗ - Gabapentin · No change
ketamine, gabapentin, oxytocin, nimotop and lamictal ... None of them affected me at all
In context ↗ - Baclofen · No change
Tried it, nothing happened but mild muscle relaxant.
In context ↗ - Ativan · Helped
I do use a ativan 1xday, but I have never increased my dose over the years
In context ↗ - cannabis · No change
At the time I was smoking daily and it certainly didn't help me
In context ↗ - MDMA · Not said
I have taken only a little when I was sick, it was nice at the time and I didnt crash but it was a small amount
In context ↗ - Florinef · Helped
I have been on florinef for 11 days now and my brain functioning has maybe doubled or more
In context ↗ - Midodrine · Helped a lot
I have been on midodrine for 3 months. My fatigue is 40% better, I recover better from from hard days.
In context ↗ - recumbent biking · Helped
Recumbent biking is really the best thing for cfs.
In context ↗ - high salt diet · Helped
I've seen pretty dramatic reductions in my chronic fatigue syndrome, which was post-viral, by taking midodrine, mestonin and eating a high salt diet
In context ↗ - bed elevation · Helped
I put 5 inches of book under the head of my bed
In context ↗ - osteopathic manipulation · No change
I've had 4 sessions so far, no results but I'm optimistic
In context ↗ - Mestinon · Helped
Mestinon & Midodrine combo has reduced my fatigue 50%, my brain fog maybe more.
In context ↗ - Nasonex · Helped
azelastine + nasonex reduces my nasal congestion and inflammation by 60%
In context ↗ - Azelastine · Helped
I ended up on Azelastine and nasonex and it was like going from 10% improvement on the ones i had tried before to a 70% improvement over 3 weeks
In context ↗ - Flonase · No change
Flonase doesn't do anything for me
In context ↗ - Pepcid · Helped a lot
Pepcid is like a miracle drug for me, I just take it when I have any sort of Gi problem and voila its gone
In context ↗ - D-Ribose · Helped
D-Ribose helped me for a while, but fell off after a few months and it hasn't worked for me since
In context ↗ - cyclobenzaprine · Helped
taking sleeping pills (seroquel or cyclobenzaprine) as needed since they allow me a deeper sleep
In context ↗ - mood leveler · Helped
I took a mood leveler, which helped with these symptoms, but not enough for me to keep taking it
In context ↗ - mushroom supplement (reishi, maitake) · Helped
I was on an mushroom supplement and an antidepressant and I think they actually helped with my pem
In context ↗ - swimming · Not said
I went swimming a few days ago. Did some laps, rolled around. Walked around. I was astounded by how tired I was, and my arms are still killing me.
In context ↗ - weightlifting · Worse
At one point I could do 50, 5 sets of 10, but the last set would be pretty sporadic. Then I would crash for week straight.
In context ↗ - daily stretches · Helped
I did three stretches: psoas, hamstring, and glutes for 30 seconds each every day and after a month or two it went away
In context ↗ - chiropractor · Helped
FWIW a chiropractor helps but it also only lasts a day or two
In context ↗ - beta blockers · Worse
I tried a few, but they made me feel worse.
In context ↗ - nortriptyline · Worse
I had a bad reaction to nortrytaline given me bad hypotension and migraines
In context ↗ - desmopressin · Not said
I tried it but wasn't able to take it for long because your not supposed to drink after taking it
In context ↗ - CBT · Helped
CBT is effective in relieving my anxiety and has less side effects than most anti-anxiety medication
In context ↗ - quercetin · Helped
It does work for my sinusitis, but its pretty modest - maybe 15-20% improvements and only in that 1 particular symptom.
In context ↗ - minocycline · Helped
I had very mild benefit when I was on it for 2 months but I think I was on a lower dose.
In context ↗ - milk thistle · Helped
milk thistle, which will lower my liver enzymes to normal within a week of taking it
In context ↗ - vitamin D · Not said
my Vitamin D never increased despite taking some supplements
In context ↗ - Aciphex · Helped
What work for me was actually taking aciphex, which is an acid reducer
In context ↗ - black tea · Helped
What work for me was actually taking aciphex, which is an acid reducer, and black tea
In context ↗ - saline infusions · No change
I have taken saline infusions for OI. They weren't particularly helpful and, even worse, they only lasted about 48 hours.
In context ↗ - Advil · Helped
I find advil helps with a my fatigue a little and with my muscle aches a little. Its does wonders for me when I'm crashing too.
In context ↗ - dropping milk and nuts · Helped
I think dropping anything milk based completely is key. Makes a world of difference, same with nuts.
In context ↗ - high protein diet · Helped
I do think a high protein diet is key.
In context ↗ - high-fat high-calorie meal · Helped
I ate about 1500 calories and 60 g of fat because reasons. But, I woke up today feeling great
In context ↗ - visualisation · Helped a lot
over a few months it just got less and less loud and I have no idea when but it went away completely
In context ↗ - short cold showers · Helped
Try showering in under 2 minutes or using cold water. Saves me a ton of energy.
In context ↗ - long bouts of sleep · Helped
really long bouts of sleep ... it helps my recovery from really bad periods
In context ↗
Approaches: POTS medication · Diet · Physiotherapy and rehab · Radical rest
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| summer before college, age 18 | flu-like illness the summer before collegeI've had cfs for 9 years after getting sick when I was 18 with a flu like illness.In context ↗ | Mild | |
| 18-25 | pushed through college and jobs while chasing infections, left college, failed at jobsI had to fail at jobs embarrassingly, I had to cry in front of them explaining all the symptoms over and over again.In context ↗ | Moderate | |
| December 2014 | brain fog and mental functioning improved on Florinefbasically that brain fog sensation is 90% gone and my mental functioning (memory, executive functioning) is like at least 50-60% better.In context ↗ | Mild | Fludrocortisone / Florinef |
| May 2015 | three months on midodrine, 40% less fatigue and sharper visionMy fatigue is 40% better, I recover better from from hard days. My vision is sharper.In context ↗ | Mild | Midodrine |
| September 2015 | midodrine plus Mestinon; got through an eight-hour wedding and drove five hours the next dayI got through a 8 hour wedding this weekend recovered well enough to drive 5+ hours the next die.In context ↗ | Mild | Mestinon / pyridostigmine |
| November 2015 | at least 50% better, enough to work part time if he choseI've recovered enough to work at least part time (although I'm not doing it at the moment)In context ↗ | Mild | Midodrine |
| February 2017 | still limited to about six minutes on the stationary bike without PEMI'm at about 6 minutes on the bike at night which isn't great but at least its starting to feel like exercise.In context ↗ | Mild |
Adverse events
- Amphetamine salts (Adderall)“adderall gives me the most insane crashes and I can't eat on it” In context ↗ Made symptoms worse
- Valcyte / valganciclovir“no response to Valcyte (except sleep distrubances)” In context ↗ Insomnia from treatment
- Amphetamine salts (Adderall)“it would only last for 3 hours. Then that neck/back burnign you talked about would kick in for 3 hours straight” In context ↗ Made symptoms worse
- Amphetamine salts (Adderall)“I would always get a migraine when the adderrall wore off” In context ↗ Made symptoms worse
- Fluoxetine (Prozac)“When I stopped taking it after 3 months I felt incredibly depressed and sick.” In context ↗ Withdrawal problems
- Amphetamine salts (Adderall)“I found they just sped me up without relieving the fatigue which led to daily epic crashes” In context ↗ Made symptoms worse
- Nortriptyline (Pamelor)“I had a bad reaction to nortrytaline given me bad hypotension and migraines” In context ↗ Low blood pressure or fainting
- Antibiotics (unspecified)“I had terrible bowel problems that disrupted my life in an extreme way (started after abx).” In context ↗ Gut side effects
- Beta-blockers (unspecified)“I tried a few, but they made me feel worse.” In context ↗ Made symptoms worse
- Ketamine“it was unpleasant being dissociative” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitusVision problems
Their words about their symptoms
- Brain fog
40-50% reductions in my fatigue and brain fog (but not in PEM)
In context ↗ - Post-exertional malaise
I'm still stuck biking for under 4 minutes or else I get PEM
In context ↗ - POTS & dysautonomia
But I have the symptoms of dysautomia so I pursued treatment.
In context ↗ - Headaches & migraine
I even have a permanent pressure headache too
In context ↗ - Sleep problems
I need 10, 12, 14 hours of sleep for a week
In context ↗ - Pain & fibromyalgia
I still have the neck pain 8 years later.
In context ↗ - Light & noise sensitivity
the first things to improve were my 'sensory overload' and hypersensitivity to stimulus
In context ↗ - Heart symptoms & palpitations
my heart doesn't race when I go to the store
In context ↗ - Tinnitus
I have dead silence now, just like I used too.
In context ↗ - Gut problems
after almost a year of these severe problems I stabilized after a month
In context ↗ - Mast cell (MCAS) & allergies
I do have traditional allergy symptoms, but antihistamines offer little benefit to that symptom
In context ↗ - Flu-like symptoms
that was the cause of most of my ME sorethroats
In context ↗ - Anxiety & low mood
CBT is effective in relieving my anxiety
In context ↗ - Vision problems
My vision is sharper.
In context ↗
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