ME/CFS
Severe → no benefitIll for 4 years
ME/CFS: up four hours a day, out once a month, nothing helped the fatigue
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 4 years
- Last post
- Oct 2014
In their words
- Condition: ME/CFS
I have many other disorders and the usual fibro that comes with CFS.
In context ↗ - At worst: Severe
I can barely stay up for 4 hours now and I sleep for 24-30 hours easily afterwards.
In context ↗ - Now: No benefit
I just feel like mine has gotten worse and worse.
In context ↗ - Began after: another virus
Then one day, I felt like I had a really bad stomach flu and I was rushed to the ER thinking it was appendicitis.
In context ↗
Read from 10 of their posts and comments; links to the 8 this page draws on
Summary
Fjord 39114 had been ill about four years with CFS, fibromyalgia, gastroparesis and panic disorder. By October 2014 fatigue had worsened: they could stay up about four hours, slept 24-30 hours at a stretch and left the house about once a month. Morphine, clonazepam and Paxil controlled pain and anxiety, but nothing helped the fatigue; Lyrica gave one good week of pain relief before it wore off. A move left them without a local doctor; their old doctor still prescribed existing meds, but they had not yet found one nearby to prescribe new ones.
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What they tried
Also tried
Lyrica· Helped a lot · wore offClonazepam· HelpedPaxil· HelpedMorphine ER· HelpedDomperidone· Helpeddocusate-sodium (stool softener)· HelpedPrevacid· Helpedlicorice root tea· HelpedGold Bond anti itch cream· HelpedYoga, meditation· Helpedtricyclic's· No changeGabapentin· No changeover the counter allergy medication· No changetherapy· No changeCymbalta· Worsepropranolol· Not saidOxycocet· Not saidXanax· Not saidMelatonin· Not saidone natural remedy· Not saidJTube· Not saidherbs· Not saidacupuncture and acupressure· Not saidhypnosis, self-hypnosis· Not saidchiropractics· Not saidvisualization· Not said
Their words about each treatment
- Clonazepam · Helped
1mg of Clonazepam 2x per day as well as Paxil 40mg 1x per day
In context ↗ - Paxil · Helped
I've tried most SSRI's and Paxil has been the best for me by far.
In context ↗ - propranolol · Not said
propranolol 30mg for anxiety and heart palpitations
In context ↗ - Morphine ER · Helped
my pain is down by a lot now thanks to the morphine
In context ↗ - Oxycocet · Not said
Oxycocet for breakthrough pain but I try to not take many
In context ↗ - Xanax · Not said
There is a low dose of Xanax for ''as needed'' which I basically never use.
In context ↗ - Domperidone · Helped
Taking 60mg of Domperidone per day to help digestion
In context ↗ - docusate-sodium (stool softener) · Helped
with the help of a stool softener, things are not too bad
In context ↗ - Prevacid · Helped
I have to take my Domperidone and my Prevacid to help with the nausea
In context ↗ - Cymbalta · Worse
So Cymbalta was tried and it was an utter fail.
In context ↗ - tricyclic's · No change
Wish they helped me.
In context ↗ - Gabapentin · No change
The gapapentin did nothing
In context ↗ - Lyrica · Helped a lot
The pain was ALL gone.
In context ↗ - Melatonin · Not said
Melatonin which is natural is my go to before any sleeping pill
In context ↗ - licorice root tea · Helped
It's helped me A LOT with my nausea btw
In context ↗ - one natural remedy · Not said
I've tried one natural remedy and lost 70$ on it
In context ↗ - over the counter allergy medication · No change
I tried that as well as prescription allergy meds and it did not do much.
In context ↗ - Gold Bond anti itch cream · Helped
I was pretty amazed at how well it helped soothe the itchiness from the Morphine.
In context ↗ - JTube · Not said
had to be fed by JTube
In context ↗ - Yoga, meditation · Helped
I do Box Breathing when I have an attack
In context ↗ - herbs · Not said
I've done Yoga, meditation, hypnosis, self-hypnosis, herbs, acupuncture and acupressure, different types of therapy, chiropractics, visualization
In context ↗ - therapy · No change
my anxiety remained the same after 3 years of work
In context ↗
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 chart starts 2 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | onset with a stomach-flu-like illness, then pain all over, fatigue and worsening anxietyThen one day, I felt like I had a really bad stomach flu and I was rushed to the ER thinking it was appendicitis.In context ↗ | Not stated |
| after 2+ years of trialling meds | pain, anxiety and stomach trouble brought under a fair control with the pill regimen; could stay awake 10-12 hours most daysIt was a lot of sleep but I could stay awake 10-12 hours ALL the time.In context ↗ | Moderate |
| October 2014 | fatigue worsening: up about four hours, sleeping 24-30 hours at a stretch, out of the house about once a monthI can barely stay up for 4 hours now and I sleep for 24-30 hours easily afterwards.In context ↗ | Severe |
Adverse events
- Clonazepam (Klonopin)“the Clonazepam has a drowsy effect and so does the morphine and the percocets” In context ↗ Side effects
- Clonazepam (Klonopin)“the Clonazepam has a drowsy effect and so does the morphine and the percocets” In context ↗ Side effects
- Duloxetine (Cymbalta)“I don't deal well with SNRI's. They do not help my pain, make my anxiety worse and make me more nauseated than usual. So Cymbalta was tried and it was an utter fail.” In context ↗ Mood or psychiatric effects
- Duloxetine (Cymbalta)“I don't deal well with SNRI's. They do not help my pain, make my anxiety worse and make me more nauseated than usual. So Cymbalta was tried and it was an utter fail.” In context ↗ Gut side effects
- Paroxetine (Paxil)“For me, it's nausea as I go up in dose.” In context ↗ Gut side effects
- Pregabalin (Lyrica)“The first week, I felt a bit like I was drunk or zombified but it didn't hurt-didn't feel too bad.” In context ↗ Side effects
- “the morphine makes me very itchy. I have to put Gold-Bond anti itch cream all over my body 2-3x per day when I'm up and it often wakes me up” In context ↗ Side effects
- “I ripped off all my skin from my feet during my sleep last week.” In context ↗ Side effects
- “Yes the morphine does reduce the motility and it's not ideal with my gastroparesis as you can guess.” In context ↗ Gut side effects
- “Same with the Oxycocet when I take it.” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsPain & fibromyalgiaSleep problems
Their words about their symptoms
- Sleep problems
I usually sleep 14 hours minimum and 2-3 days max.
In context ↗ - Pain & fibromyalgia
I have many other disorders and the usual fibro that comes with CFS.
In context ↗ - Brain fog
I'm just so lost in my fatigue and in my brain fog
In context ↗ - Anxiety & low mood
It's getting worse and so is my depression because of it.
In context ↗ - Gut problems
I am used to my mild constant nausea
In context ↗ - Headaches & migraine
I get the occasional migraine every so often and they are bad.
In context ↗ - Heart symptoms & palpitations
propranolol 30mg for anxiety and heart palpitations
In context ↗