Vynce

Is this ME/CFS?

29 posts in this topic

59 minutes ago, integral said:

Oh, for sure, you could have Lyme for example.

What were the exact medications that you took?

Are you sure you don't have an infection? This all sounds like an infection that's undiagnosed?

The reason is because there's only started one year ago. It's not normal.

It's possible your nervous system is all screwed up from chronic stress and you induced some kind of autoimmune disease, but it's rare for it to happen in only one year. 

 

Already checked out Lyme. 

Medications are interesting because there were multiple strong agents on my nervous system for months. After a heavy car crash in 2023 and subsequent poly trauma, I did take different opiods (general pain) and pregabalin (nerve pain) for almost 2 years. The CFS did start when I was in the final withdrawal phase of all that. So my guess was I was just fatigued from that. 

I also startet a treatment with Ritalin in that time period, which I also suspect to have stressed my nervous system to a good extend. If I was just listening on my gut, I would say it was the Pregabalin withdrawal or the Ritalin that caused my nervous system to fall into CFS. Very unscientific though. Could be something else all along. 

Share this post


Link to post
Share on other sites
1 hour ago, integral said:

Oh, for sure, you could have Lyme for example.

What were the exact medications that you took?

Are you sure you don't have an infection? This all sounds like an infection that's undiagnosed?

The reason is because there's only started one year ago. It's not normal.

It's possible your nervous system is all screwed up from chronic stress and you induced some kind of autoimmune disease, but it's rare for it to happen in only one year. 

 

And yeah, No infection, for many months before the CFS started. And even now, all infection bio-markers are silent. 

Auto-immune is what I largely expect to be the cause as well. But with no good test or screening to see what exactly is off. Maybe also just neurological. Or both. 

Share this post


Link to post
Share on other sites

@Vynce use AI deep search to find people who got CFS after opiod and pregabalin use. Tell it the specific drugs you took and find people who got CFS from it. See exactly how they went through this. 

Edited by integral

How is this post just me acting out my ego in the usual ways? Is this post just me venting and justifying my selfishness? Are the things you are posting in alignment with principles of higher consciousness and higher stages of ego development? Are you acting in a mature or immature way? Are you being selfish or selfless in your communication? Are you acting like a monkey or like a God-like being?

Share this post


Link to post
Share on other sites

@integral

Yeah, AI isn't to keen on that idea. 

Also these medications have been studied for decades, so even rare side-effects are known. Maybe they super-charged it in a way. But super-charged what? My cells decision to just work at 5% capacity, permanently? Its just so weird that my body would want to do that, without any infection or serious immediate trauma.

Edited by Vynce

Share this post


Link to post
Share on other sites
34 minutes ago, Vynce said:

@integral

Yeah, AI isn't to keen on that idea. 

Also these medications have been studied for decades, so even rare side-effects are known. Maybe they super-charged it in a way. But super-charged what? My cells decision to just work at 5% capacity, permanently? Its just so weird that my body would want to do that, without any infection or serious immediate trauma.

I don't see why finding people who had the exact same problem as you and seeing what they did to resolve it is a bad idea?


How is this post just me acting out my ego in the usual ways? Is this post just me venting and justifying my selfishness? Are the things you are posting in alignment with principles of higher consciousness and higher stages of ego development? Are you acting in a mature or immature way? Are you being selfish or selfless in your communication? Are you acting like a monkey or like a God-like being?

Share this post


Link to post
Share on other sites
16 hours ago, integral said:

I don't see why finding people who had the exact same problem as you and seeing what they did to resolve it is a bad idea?

No, thats a great idea. I do scour forums, podcasts, blogs, news, articles and conferences for that. However: spontaneous cure for CFS seems to be 1-5% in adults in the first 3-4 years of symptoms - practially 0% after that. And there is not one single curative approach to this illness so far. Not via medication or psychosomatic approaches. Nothing.

There is a lot you can do to not make it worse and stable the situation. But resolving it? Nothing viable I could find. I pay anyone on this forum 1000$ for his/her idea that actually makes my fatigue go away, without it coming back. 

Edited by Vynce

Share this post


Link to post
Share on other sites
6 hours ago, Vynce said:

I pay anyone on this forum 1000$ for his/her idea that actually makes my fatigue go away, without it coming back. 

Because it's been only a year, the problem is likely going to get better on its own, your body needs time to heal itself.

Is there no micro progress everyday?

For General Health, have you tried heavy bodybuilding and not walking? Some body types feel worse with walking, cardio or HIT, and do better with 8 reps of heavy weight.

Edited by integral

How is this post just me acting out my ego in the usual ways? Is this post just me venting and justifying my selfishness? Are the things you are posting in alignment with principles of higher consciousness and higher stages of ego development? Are you acting in a mature or immature way? Are you being selfish or selfless in your communication? Are you acting like a monkey or like a God-like being?

Share this post


Link to post
Share on other sites

@Vynce 

Clinical approach, your specific problem https://claude.ai/public/artifacts/03136b21-11bc-4070-b923-aca0f7598d30

Patients and how they recovered, your specific problem https://claude.ai/public/artifacts/fc20036a-3488-4c34-98c0-736124611c03

Quote

 

Based on everything pulled from the forums, recovery blogs, BenzoBuddies, RxISK, SurvivingAntidepressants, and the CFS recovery communities — here are the treatments that come up most consistently across people who actually recovered from this exact drug-induced fatigue situation. Ranked roughly by how often they appear in success stories.

  1. Hyperbolic microtaper (the single most mentioned thing) Reduce by 10% of the current dose, not the starting dose, every 2-4 weeks. Hold whenever symptoms flare. For pregabalin, people dissolve capsules in water (mg = ml) to hit precise small reductions — a 450mg user going down by 10-20mg at a time over 6-18 months. Cold-turkey and fast tapers are the #1 thing people warn against. Many who crashed had to reinstate at a low dose and re-taper slowly.
  2. Time + radical pacing (second most mentioned) Nearly every recovery story says meaningful improvement came at the 6-12 month mark off the drug, with continued gains through year 2. During that window, people strictly stayed below their energy threshold — heart rate monitors set to ~15 bpm above resting, stopping any activity that felt "hard," no pushing through. The push-crash cycle is what keeps people stuck.
  3. Low-dose naltrexone (LDN) The most-cited pharmacological intervention in the CFS recovery community. Typical protocol: start 1.5mg at night, titrate to 4.5mg over 3-4 weeks, give it 3 months before judging. Requires a compounding pharmacy. The Finnish study people reference showed ~74% improvement in ME/CFS patients at follow-up.
  4. Endocrine workup and replacement (most underrated) After chronic opioids specifically, get tested for: 8 AM cortisol, ACTH, DHEAS, total/free testosterone, LH, FSH. Opioid-induced adrenal insufficiency and hypogonadism are common, reversible, and frequently missed. If cortisol is low, low-dose hydrocortisone replacement (10-20mg/day split doses) under endocrinology gets many people dramatically better within weeks.
  5. 5. Magnesium (glycinate or threonate) Mentioned in almost every pregabalin/gabapentin withdrawal success story. 200-400mg at night. People describe the nervous system "screaming for magnesium" during withdrawal.
  6. Brain retraining programs DNRS (Annie Hopper), Gupta Program, Primal Trust, ANS Rewire, or Raelan Agle's Brain Retraining 101. These target the sympathetic overdrive / limbic sensitization that often outlasts the drug itself. Mixed evidence but high frequency in recovery stories, especially when physiological measures have normalized but fatigue hasn't.
  7. Mitochondrial stack CoQ10 (ubiquinol 200-400mg), acetyl-L-carnitine (1-2g), D-ribose (5g x 3/day), creatine (5g), NAC (600-1200mg). Not curative, but frequently mentioned as supportive during the recovery window.
  8. Sleep restoration as foundation Consistent bedtime, morning sunlight, no stimulants, treating any sleep apnea. People who didn't fix sleep didn't recover.
  9. Vagal/nervous system work Slow nasal breathing, humming, gargling, cold face splashes, gentle yoga nidra. Not cold plunges or intense breathwork — those crashed people. The consistent message is "gentle, parasympathetic, daily."
  10. Dopamine support for stimulant recovery specifically L-tyrosine (500-1000mg morning), B6, mucuna pruriens — used for the 1-3 month window after stopping Ritalin/Adderall. Most stimulant-crash stories resolve in 1-3 months without intervention, but these speed it up.

What people warn AGAINST:

  • Cold turkey or fast tapers
  • Graded exercise / "pushing through"
  • Adding a new drug to manage withdrawal (creates the next dependency)
  • Cold plunges, intense breathwork, aggressive detoxes, extended fasting during acute phase
  • Ice baths and hardcore interventions on a depleted system
  • Expecting linear recovery (it comes in waves)

The sequencing that works in most success stories: Finish the taper → endocrine bloodwork and replace if low → strict pacing with HR monitor → add LDN → basic supplement stack (magnesium, B-complex, CoQ10) → once stable, layer in brain retraining → slowly reintroduce movement.

The single most repeated sentiment across all the forums: "It took way longer than I expected, but I did recover." Most people reported meaningful improvement by month 6-12 off the drug, substantial recovery by 18-24 months.

 

Personally i would avoid number 7 (CoQ10 (ubiquinol 200-400mg), acetyl-L-carnitine (1-2g), D-ribose (5g x 3/day), creatine (5g), NAC (600-1200mg)), it doesnt work im my experience but you can try at some point if nothing else works. 

You're well within recovery range, there's no reason to believe your condition is permanent. Long-term illness from the drugs you took is a common thing and recovery is well documented.

Do not lose hope

Edited by integral

How is this post just me acting out my ego in the usual ways? Is this post just me venting and justifying my selfishness? Are the things you are posting in alignment with principles of higher consciousness and higher stages of ego development? Are you acting in a mature or immature way? Are you being selfish or selfless in your communication? Are you acting like a monkey or like a God-like being?

Share this post


Link to post
Share on other sites
10 hours ago, integral said:

@Vynce 

Clinical approach, your specific problem https://claude.ai/public/artifacts/03136b21-11bc-4070-b923-aca0f7598d30

Patients and how they recovered, your specific problem https://claude.ai/public/artifacts/fc20036a-3488-4c34-98c0-736124611c03

Personally i would avoid number 7 (CoQ10 (ubiquinol 200-400mg), acetyl-L-carnitine (1-2g), D-ribose (5g x 3/day), creatine (5g), NAC (600-1200mg)), it doesnt work im my experience but you can try at some point if nothing else works. 

You're well within recovery range, there's no reason to believe your condition is permanent. Long-term illness from the drugs you took is a common thing and recovery is well documented.

Do not lose hope

Wow, well thanks for this. 

I will go through everything here I may missed. Practically all of it makes sense from my experience and perspective so far.

Next in line is LDN and magnesium to test their value for my situation. 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now