ME/CFS
Severe → no benefitIll for 17 years
ME/CFS crashes, lying in a silent dark room, now at a lower baseline despite treatments
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 17 years
- Last post
- Nov 2024
In their words
- Condition: ME/CFS
I’ve had ME/CFS for almost 20 years
In context ↗ - At worst: Severe
when it’s so bad that I cannot function and am bed/couch bound
In context ↗ - Now: No benefit
Mine has gotten worse over time.
In context ↗
Read from 19 of their posts and comments; links to the 14 this page draws on
Summary
A woman with ME/CFS for about 17 years was in bad crashes able to do nothing but lie in a silent dark room. Bio-identical testosterone pellets in 2022 gave a 25-30% improvement in energy, mood and PEM; BPC-157 peptides, low-dose naltrexone, valacyclovir and cannabis helped somewhat. She spent on medical-spa treatments for a brief boost but felt 'propped up' and jittery, and by late 2024 had worsened to a new lower baseline.
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What they tried
Also tried
Ritalin (methylphenidate)· HelpedProzac· Helped · wore offMedical cannabis· HelpedCBD with CBN (no THC)· HelpedMassage therapy· Helped · wore offBioidentical testosterone hormone pellet· HelpedDaily meditation· HelpedValacyclovir· HelpedLow dose naltrexone· HelpedBPC 157· HelpedTB 500· HelpedWhole body cryotherapy· HelpedRed light therapy· HelpedIV nutrient cocktail· Helped · wore offCompression therapy· HelpedIM shot of amino acids· HelpedCaffeine· HelpedPushing to get more steps in· Much worseKlonopin· Not saidAmbien· Not saidGluten-free diet· Not said
Their words about each treatment
- Ritalin (methylphenidate) · Helped
I was on 10 mg long acting Ritalin and did not have insomnia from it, I took it daily. I got pregnant ... so came off of it
In context ↗ - Prozac · Helped
my Prozac has pooped it’s
In context ↗ - Klonopin · Not said
I’m still on klonopin & ambien, need to get off as I’m now physically dependent to sleep.
In context ↗ - Medical cannabis · Helped
Medical cannabis helps me with pain, malaise, nausea/abdominal discomfort, anxiety and bad/low mood associated with crash/flared symptoms and fatigue.
In context ↗ - CBD with CBN (no THC) · Helped
But CBD with CBN and no thc does help some with sleep.
In context ↗ - Massage therapy · Helped
Massage therapy usually gives me a little boost for a few days
In context ↗ - Bioidentical testosterone hormone pellet · Helped
I had the bio identical testosterone hormone pellet inserted last thurs, almost 1.5 weeks ago, and am experiencing significant improvement.
In context ↗ - Daily meditation · Helped
starting back up with my daily meditations which help significantly with that
In context ↗ - Valacyclovir · Helped
Valacyclovir helps me - 500 mg /day until my liver enzymes go up, then I take a break & my liver enzymes return to normal.
In context ↗ - Low dose naltrexone · Helped
I also take low dose naltrexone which definitely helps.
In context ↗ - BPC 157 · Helped
BPC 157 peptides have helped
In context ↗ - TB 500 · Helped
I’ve also started BPC 157 & TB 500 subQ peptide shots im doing at home.
In context ↗ - Whole body cryotherapy · Helped
I do think ive gotten a boost from these treatments, but I feel sorta jittery & ‘propped up’ while still feeling malaise.
In context ↗ - IV nutrient cocktail · Helped
In the past I’ve done 4-6 treatments of IV nutrients ( similar to Myers cocktail) with some benefit.
In context ↗ - Compression therapy · Helped
compression therapy in my legs which ache a lot
In context ↗ - IM shot of amino acids · Helped
got an IM (intramuscular) shot of some amino acids
In context ↗ - Gluten-free diet · Not said
I’ve also cut out gluten.
In context ↗ - Caffeine · Helped
Same with caffeine in mild- moderate doses.
In context ↗ - Pushing to get more steps in · Much worse
So I made a pint to get more steps in, which permanently worsened my ME/CFS.
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 first step with a time is 17 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 | After |
|---|---|---|---|
| onset | fell ill with ME/CFSI’m a 44 year old female with devastating, life altering CFS past 17 years.In context ↗ | Not stated | |
| — | felt 30% better while pregnantI felt like 30 % better when I was pregnant, I believe due to all the hormones including progesterone.In context ↗ | Mild | |
| — | pushed to increase daily steps and permanently worsenedSo I made a pint to get more steps in, which permanently worsened my ME/CFS.In context ↗ | Moderate | |
| — | married and had a child, new lower baselineThen I got married & had a child - got worse again- new lower baseline.In context ↗ | Moderate | |
| 2022-02 | testosterone pellet gave 25-30% improvementI had the bio identical testosterone hormone pellet inserted last thurs, almost 1.5 weeks ago, and am experiencing significant improvement.In context ↗ | Mild | Testosterone |
| 2024-08 | brief boost from medical spa treatmentsI do think ive gotten a boost from these treatments, but I feel sorta jittery & ‘propped up’ while still feeling malaise.In context ↗ | Mild | |
| 2024-11 | worsened over time to a new lower baselineMine has gotten worse over time.In context ↗ | Severe |
Adverse events
- Cannabis (THC, marijuana)“Makes it worse ironically.” In context ↗ Insomnia from treatment
- Methylphenidate (Ritalin, Concerta)“They also clear slowly from my system amd can dramatically worsen my insomnia.” In context ↗ Insomnia from treatment
- Methylphenidate (Ritalin, Concerta)“If I already feel terrible fatigue & malaise, thry intensity my symptoms.” In context ↗ Made symptoms worse
- Valtrex / valacyclovir“500 mg /day until my liver enzymes go up, then I take a break & my liver enzymes return to normal” In context ↗ Liver or kidney problems
- Clonazepam (Klonopin)“I’m still on klonopin & ambien, need to get off as I’m now physically dependent to sleep.” In context ↗ Withdrawal problems
- Clonazepam (Klonopin), Zolpidem (Ambien)“I’m still on klonopin & ambien, need to get off as I’m now physically dependent to sleep.” In context ↗ Withdrawal problems
- BPC-157, TB-500 (thymosin beta-4), Cryotherapy and cold exposure, Red and near-infrared light therapy, IV vitamins and Myers cocktail, Other amino acids“I feel sorta jittery & ‘propped up’ while still feeling malaise.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsLight & noise sensitivityPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
exercise causes PEM
In context ↗ - Brain fog
It helps quite a bit with the brain fog
In context ↗ - Sleep problems
It doesn’t help with my insomnia though
In context ↗ - Pain & fibromyalgia
Medical cannabis helps me with pain
In context ↗ - Gut problems
nausea/abdominal discomfort
In context ↗ - Anxiety & low mood
anxiety and bad/low mood associated with crash/flared symptoms
In context ↗ - Flu-like symptoms
helps me with pain, malaise
In context ↗ - Light & noise sensitivity
I’m a bad crash, all I can do is lay in the silent dark.
In context ↗