ME/CFS
Very severe → relapsedIll 23 years before improving or writingNeeds ongoing treatment
ME/CFS improved for over a decade, then crashed to very severe and mostly in bed
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 23 years
- Last post
- May 2021
In their words
- At worst: Very severe
I needed help walking more than a few steps, and some mornings I couldn't even sit up.
In context ↗ - Now: Relapsed
I had a big improvement in the 4th year and for a long time I was much better but not well ... It didn't last unfortunately.
In context ↗ - Began after: another virus
sudden onset after being sick
Read from 75 of their posts and comments; links to the 33 this page draws on
Summary
Marsh 10095 became ill with ME/CFS after a sudden viral-type onset and, after a big improvement in her fourth year, spent over a decade much better but not well. Pushing physically while caregiving crashed her to very severe, unable to wash her hair for 18 months, and she later developed POTS. Beta blockers then midodrine lowered her standing pulse but did not restore energy; she stayed housebound and mostly in bed.
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What they tried
What they credit
Also tried
beta blocker· Helpedfluids, salt and compression stockings· Helpedfluids, salt and compression stockings· Helpedgabapentin· Helpedself-massage of trigger points with heat· Helpedgrief counseling and online therapy· Helpedantibiotic· Helpedmidodrine· Helpediron supplements· Helpedmeditation/mindfulness program· Helpedflorinef· Helpedsitting upright in a chair instead of bed· Helpedthiamine· HelpedB12 and folate supplements· HelpedB12 and folate supplements· Helpedlidocaine injections· Helped · wore offNSAID· No changeclean eating / food avoidance· No changepickled garlic· No changemito supplements· No changehomeopathy· No change25mg shake· WorsePOTS floor exercises video· Worseantivirals· Not saidOmeprazole· Not saidmelatonin· Not saidbed yoga and short walks· Not saidAntidepressants (unspecified)· Not said
Their words about each treatment
- pacing · Helped
Pacing is the best thing I've done.
In context ↗ - beta blocker · Helped
I'm on a beta blocker now and it's dramatically helped my pulse, though I still don't feel that great standing.
In context ↗ - fluids, salt and compression stockings · Helped
My blood pools in my extremities even with compression, fluids, salt, and midodrine (though these things do help).
In context ↗ - gabapentin · Helped
I take gabapentin for neuropathic pain and migraine prevention, and it helps a lot
In context ↗ - singulair · Helped
I'm on gabapentin and singulair too, they've both helped me a lot.
In context ↗ - self-massage of trigger points with heat · Helped
It's no cure, but between working on the blood pressure and the self-massage there are no more sleepless nights due to pain.
In context ↗ - grief counseling and online therapy · Helped
It was extremely helpful and got me through a period of intense grief.
In context ↗ - antibiotic · Helped
It was only when I got abdominal pain and burning peeing that I thought oh it might be infection. I felt much better after an antibiotic!
In context ↗ - midodrine · Helped
I just switched from beta blocker to midodrine and I have less pooling, and my pulse is just as low.
In context ↗ - 25mg shake · Worse
after I drink a 25mg shake I feel sore and have gotten a small fever
In context ↗ - iron supplements · Helped
Correcting iron deficiency and folate anemia ... I've tried all of the different supplements and the best one, for me, has been the liquid kind.
- NSAID · No change
I take an NSAID and drink coffee currently and lately have been feeling a little stronger, I don't think they've had any positive or negative impact on my course of illness.
In context ↗ - clean eating / food avoidance · No change
The same with meditation or clean eating. They're good things to do but not necessarily influential, in my case.
In context ↗ - meditation/mindfulness program · Helped
Meditation and CBT have helped me a lot with anxiety!
In context ↗ - antivirals · Not said
I crashed on antivirals. I don't think they caused it, just coincidental.
In context ↗ - Omeprazole · Not said
I was on Omeprazole for many years. My only side effect was eventual anemia.
In context ↗ - pickled garlic · No change
I eat 2-3 cloves a day, no improvement in symptoms.
In context ↗ - florinef · Helped
I have tried compression, fluid loading, midodrine, beta blockers and florinef. Some help control my pulse but none have impacted PEM or restored energy.
In context ↗ - sitting upright in a chair instead of bed · Helped
Staying in a comfortable chair part of the day instead of bed.
In context ↗ - melatonin · Not said
melatonin for sleep
In context ↗ - thiamine · Helped
I have a thiamine deficiency. I'm on 50mg/day. It helps a little bit. I notice when I forget to take it.
In context ↗ - POTS floor exercises video · Worse
I tried to do a POTS floor exercises video once, and I got PEM after one set of leg lifts.
In context ↗ - B12 and folate supplements · Helped
supplement documented insuffiencies - b12, folate, iron -- melatonin for sleep.
In context ↗ - bed yoga and short walks · Not said
Right now I do bed yoga and walk for a minute every two hours, as well as light housework.
In context ↗ - mito supplements · No change
Early on I tried the mito supplements, a bunch of other stuff, homeopathy, etc. It didn't work!
In context ↗ - lidocaine injections · Helped
I have had lidocaine injections which helped, but only for a few days.
In context ↗ - Antidepressants (unspecified) · Not said
I've had the same problem with not clearing drugs but mine happened with tricyclics!
In context ↗
Approaches: Antihistamines & MCAS · Pacing
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | sudden onset ME/CFS after being sickMy illness started with sudden onset. I've been ill for 23 years.In context ↗ | Severe | |
| 4th year | big improvement, out once or twice a week, cooking a littleI had a big improvement in the 4th year and for a long time I was much better but not well. I could go out once or twice a week, even cook a little.In context ↗ | Moderate | |
| ten years ago | crashed to very severe after two years of pushing physicallyI had two years later on in my life where I pushed myself physically and eventually crashed to very severe. Like I didn't wash my own hair for 18 months.In context ↗ | Very severe | |
| 13.2 y | gradually got better to housebound after a few monthsFor me, it lasted a few months and then I gradually got better. I'm housebound now which sucks but it's so much better than the near-completely bedridden state I was in.In context ↗ | Severe | |
| 2013 | diagnosed with POTS; beta blocker lowered standing pulseI'm on a beta blocker now and it's dramatically helped my pulse, though I still don't feel that great standing.In context ↗ | Severe | Beta-blockers (unspecified) |
| 2017-12-19 | switched to midodrine, less blood pooling with low pulseI just switched from beta blocker to midodrine and I have less pooling, and my pulse is just as low.In context ↗ | Severe | Midodrine |
| 2021-05-11 | still housebound and mostly in bedI'm mostly in bed with limit ability to talk.In context ↗ | Severe |
Adverse events
- “after I drink a 25mg shake I feel sore and have gotten a small fever” In context ↗ Made symptoms worse
- Iron infusion / ferritin repletion“I hate taking iron and it upsets my stomach even with food, and I get super constipated.” In context ↗ Gut side effects
- Omeprazole (Prilosec)“I was on Omeprazole for many years. My only side effect was eventual anemia.” In context ↗ Blood count problems
- Meditation, yoga, breathwork“The first time I tried to meditate I felt even more anxious.” In context ↗ Mood or psychiatric effects
- Antidepressants (unspecified)“I've had the same problem with not clearing drugs but mine happened with tricyclics!” In context ↗ Side effects
- “I'm kinda spacy and forgetful but that's it.” In context ↗ Side effects
- Everyday exercise and activity“I tried to do a POTS floor exercises video once, and I got PEM after one set of leg lifts.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
it triggered really bad post exertional malaise
In context ↗ - POTS & dysautonomia
Just diagnosed with POTS.
In context ↗ - Brain fog
massive PEM after exercise, brain fog, muscle pain, etc
In context ↗ - Pain & fibromyalgia
I also have a fibro diagnosed
In context ↗ - Headaches & migraine
I haven't had a good bell ringer in years now, though I do get menstrual headaches.
In context ↗ - Tinnitus
the tinnitus never did, it's kind of always there
In context ↗ - Sleep problems
there are no more sleepless nights due to pain
In context ↗ - Gut problems
I had three years where I was in the bathroom hunched over in pain every day.
In context ↗ - Heart symptoms & palpitations
My pulse would race but I figured I was just deconditioning.
In context ↗ - Muscle weakness
I needed help walking more than a few steps, and some mornings I couldn't even sit up.
In context ↗ - Neuropathy & tingling
I take gabapentin for neuropathic pain and migraine prevention
In context ↗ - Anxiety & low mood
after a series of bad news and loss, I developed anxiety
In context ↗ - Temperature regulation
I get low fevers with CFS
In context ↗ - Vision problems
eventually my vision would gray
In context ↗
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