ME/CFS
Very severe → somewhat betterIll 19 years before improving or writing
ME/CFS for 14 years, now somewhat better
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 19 years
- Last post
- Dec 2023
In their words
- Condition: ME/CFS
I've had CFS for 14 years, came down with it after mono in high school.
In context ↗ - At worst: Very severe
I went from bed bound to being unable to be in bed, uncontrollable movement, pacing, akathisia constant panic and chemical terror.
In context ↗ - Now: Somewhat better
I got off the benzos years ago ... I'm not fully healed.
In context ↗ - Began after: glandular fever or EBV
came down with it after mono in high school
Read from 13 of their posts and comments; links to the 8 this page draws on
Summary
Crane 70754 had CFS for 14 years, since mono in high school, and said nothing had helped. High-dose vitamin D3 caused flares and, in 2018, severe insomnia; prescribed Ativan led to dependence within three weeks and cold-turkey withdrawal with terror, burning pain and akathisia that put them in a psych ward. They tapered off with Klonopin and later got off benzos, but in 2023 said they were still not fully healed.
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What they tried
Also tried
Their words about each treatment
- vitamin D3 · Much worse
After the first day i felt extremely tired, sedated and brain fog was through the roof
In context ↗ - magnesium glycinate · Not said
I was taking 5000iu daily, along with magnesium glycinate.
In context ↗ - Klonopin · Not said
we put together a plan to taper and switched me right away to Klonopin due to the increased half life
In context ↗ - Zoloft · Much worse
Horrible side effects, brutal withdrawal, I was never the same.
In context ↗ - compazine · Much worse
An injection of compazine caused weeks of unbearable akathisia.
In context ↗ - biaxin · Much worse
A round of biaxin caused antibiotic induced psychosis, my baseline plummeted after that and I never recovered.
In context ↗ - trazodone · Helped
I can take trazodone which is helpful for sleep.
In context ↗ - antihistamines · Worse
I can't take antihistamines unfortunately, they give me akathisia and rev me up.
In context ↗ - Lorazepam (Ativan) · Not said
I had become physically dependent on the Ativan in a period of 3 weeks. I then went through cold turkey withdrawal.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were |
|---|---|---|
| high school | CFS began after monoI've had CFS for 14 years, came down with it after mono in high school.In context ↗ | Not stated |
| 11.9 y | two-year setback after moving across the countryI was just barely starting to come out of a 2 year long set back caused by extreme stress and exhaustion brought on by moving across the country.In context ↗ | Not stated |
| late May | brutal insomnia after prescribed high-dose vitamin D3In late May I came down with absolutely brutal insomnia after taking a high dose of vitamin D3 prescribed by my doctor.In context ↗ | Not stated |
| July 2018 | cold-turkey benzo withdrawal; ER and psych wardI went from bed bound to being unable to be in bed, uncontrollable movement, pacing, akathisia constant panic and chemical terror.In context ↗ | Severe |
| 2023-12-15 | off benzos for years but not fully healedI got off the benzos years ago, but it won't help you to hear my story. The vast majority of people are healed up completely at the point I'm at, I'm not fully healed.In context ↗ | Not stated |
Adverse events
- Vitamin D and sun exposure“they tend to make my symptoms flare up for a few days.” In context ↗ Made symptoms worse
- Vitamin D and sun exposure“After the first day i felt extremely tired, sedated and brain fog was through the roof” In context ↗ Side effects
- Vitamin D and sun exposure“the left side of my body started tingling and going numb.” In context ↗ Nerve pain
- Vitamin D and sun exposure“I went to the ER and luckily that wasn't the case” In context ↗ ER visit
- Vitamin D and sun exposure“It took a month to get back to where I was before the vitamin D experience.” In context ↗ Made symptoms worse
- Vitamin D and sun exposure“I came down with absolutely brutal insomnia after taking a high dose of vitamin D3” In context ↗ Insomnia from treatment
- Vitamin D and sun exposure“Even when I took only 300 iu, I was having a really hard time with it. Not insomnia, just not feeling good at all and having a lot of neuro problems.” In context ↗ Made symptoms worse
- Lorazepam (Ativan)“I had become physically dependent on the Ativan in a period of 3 weeks. I then went through cold turkey withdrawal.” In context ↗ Withdrawal problems
- Clonazepam (Klonopin)“For five days I was awake, in terror, burning all over my body, the worst pain and agony I've ever experienced.” In context ↗ Nerve pain
- Clonazepam (Klonopin)“It landed me in the emergency room, and then due to the fact they were unable to see it was withdrawal, it landed me in the psych ward.” In context ↗ Hospitalisation
- Clonazepam (Klonopin)“Every CFS symptom is off the charts, new neurological symptoms like the uncontrollable need to clench, twist my limbs, and face.” In context ↗ Made symptoms worse
- Clonazepam (Klonopin)“Unspeakable anxiety, panic, paranoia, and delusional thoughts.” In context ↗ Mood or psychiatric effects
- Clonazepam (Klonopin)“Intense burning in my spine that spreads into my limbs.” In context ↗ Nerve pain
- Clonazepam (Klonopin)“Numbness, tingling, tinnitus and unable to eat anything. I've lost 15 lbs” In context ↗ Gut side effects
- H1 antihistamines (unspecified)“they give me akathisia and rev me up.” In context ↗ Side effects
- Prochlorperazine (Compazine)“An injection of compazine caused weeks of unbearable akathisia.” In context ↗ Side effects
- Clarithromycin (Biaxin)“A round of biaxin caused antibiotic induced psychosis” In context ↗ Mood or psychiatric effects
- Clarithromycin (Biaxin)“my baseline plummeted after that and I never recovered.” In context ↗ Made symptoms worse
- Sertraline (Zoloft)“Horrible side effects, brutal withdrawal, I was never the same.” In context ↗ Side effects
- Clonazepam (Klonopin)“I got off the benzos years ago ... I'm not fully healed.” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodBrain fogHeart symptoms & palpitationsNeuropathy & tinglingPain & fibromyalgiaSleep problemsTinnitus
Their words about their symptoms
- Sleep problems
In late May I came down with absolutely brutal insomnia after taking a high dose of vitamin D3
In context ↗ - Brain fog
brain fog was through the roof
In context ↗ - Neuropathy & tingling
the left side of my body started tingling and going numb
In context ↗ - Anxiety & low mood
Unspeakable anxiety, panic, paranoia, and delusional thoughts
In context ↗ - Tinnitus
Numbness, tingling, tinnitus and unable to eat anything.
In context ↗ - Heart symptoms & palpitations
I too have had those terrified unable to sleep heart pounding problems
In context ↗ - Pain & fibromyalgia
the worst pain and agony I've ever experienced
In context ↗