ME/CFS
No benefitIll for 11 yearsNeeds ongoing treatment
ME/CFS with five years of back and neck spasms and PEM, no benefit from magnesium or diets
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- 11 years
- Last post
- Jan 2023
In their words
- Condition: ME/CFS
One quality, or condition you could say that I have with my ME/CFS is spasms on my lower back and upper neck which never (under any circumstances) let up.
In context ↗ - Now: No benefit
Nothing has been able to help my symptoms really besides this protein and vitamin e (a little bit)
In context ↗ - Began after: nothing they could name
I've had stomach symptoms lead me into my current cfs and fibromyalgia symptoms which are unrelenting.
In context ↗
Read from 10 of their posts and comments; links to the 10 this page draws on
Summary
A Reddit user with ME/CFS and fibromyalgia described five years of unrelenting lower-back and neck spasms, a distended stomach and PEM. Magnesium, potassium, calcium, muscle relaxers, other proteins, BCAA, an elimination diet and coxsackie medicines did not help; chiropractors and deep-tissue massage gave only temporary range-of-motion gains. Dymatize ISO100 whey eased spasms slightly, improved blood flow and warded off PEM; Kyolic garlic helped cold feet.
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What they tried
Also tried
chiropractors· Helped · wore offdeep tissue massage· Helped · wore offDymatize ISO100 whey protein· Helpedvitamin e· Helpedsirolimus· Helpeddihydroquercetin· Helpedrhodiola rosea· HelpedKyolic Aged Garlic· Helpedprobiotics· Helpedbentonite clay· Helpedxifaxan· Helpediberogast· Helpedgarden of life prime defense ultra· Helpedmagnesium· No changepotassium· No changecalcium· No changemuscle relaxers· No changeother protein powders (undenatured whey, pea, rice)· No changeother protein powders (undenatured whey, pea, rice)· No changeBCAA amino acid supplements· No changeantivirals· No changelow dose naltrexone· No changeinosine/immunovir· No changelamivudine· No changeElimination diet· No changefasting· WorseCelebrex· Not saidcolchicine· Not saidequilibrant· Not said
Their words about each treatment
- magnesium · No change
I've already tried all types of magnesium, potassium, calcium, muscle relaxers. For some reason they don't work for me.
In context ↗ - chiropractors · Helped
I've tried two chiropractors before (went through a whole treatment plan) ... it would produce a little bit more range of motion but after sleeping, the morning stiffness would take over and revert completely
In context ↗ - deep tissue massage · Helped
deep tissue massages as well ... it would produce a little bit more range of motion but after sleeping, the morning stiffness would take over and revert completely
In context ↗ - Dymatize ISO100 whey protein · Helped
My muscle spasms get a little bit less, blood flow becomes a little bit better. It wards off my PEM just enough that I have to keep taking it 2-3 times a day.
In context ↗ - other protein powders (undenatured whey, pea, rice) · No change
I've tried many proteins before which never helped me, undenatured whey, pea protein, rice protein, different brands.
In context ↗ - BCAA amino acid supplements · No change
I've even tried bcaa amino acid supplements on their own which didn't help me either.
In context ↗ - vitamin e · Helped
Nothing has been able to help my symptoms really besides this protein and vitamin e (a little bit) for some reason.
In context ↗ - antivirals · No change
They offered me antivirals, low dose naltrexone. When those didn't work
In context ↗ - Celebrex · Not said
they recommended anti-inflammatories (Celebrex, colchicine, and finally sirolimus)
In context ↗ - sirolimus · Helped
I benefited a bit from sirolimus but had a lot of side effects. Wasn't sure I could tolerate it.
In context ↗ - inosine/immunovir · No change
I have tried most of these medicines for coxsackie but my titers have fluctuated and gone back to high, never under control. They didn't help me as well.
In context ↗ - equilibrant · Not said
I tried equilibrant which has oxymatrine and selenium which is supposed to help. ... I’m very sensitive to a lot of supplements so I couldn’t stick with it long enough to give it a fair shot
In context ↗ - dihydroquercetin · Helped
Dihydroquercetin has been a bit helpful which Dr chia has mentioned
In context ↗ - rhodiola rosea · Helped
as well as rhodiola rosea a little bit (but not much)
In context ↗ - Kyolic Aged Garlic · Helped
One thing that has been helping me quite a bit with feeling cold is Kyolic Aged Garlic.
In context ↗ - probiotics · Helped
I had tried quite a few probiotics, not many felt helpful. I feel better avoiding lactic acid probiotics even though my lactic acid strains are missing in stool samples.
In context ↗ - bentonite clay · Helped
3) bentonite clay (I like taking capsule form)
In context ↗ - fasting · Worse
Surprisingly when I fast, I get the most insane intolerable GERD and acid that makes it hard for me to breathe.
In context ↗ - xifaxan · Helped
I Felt some improvement when taking a one week treatment course of xifaxan
In context ↗ - Elimination diet · No change
Elimination diet didn't help me out specifically.
In context ↗ - iberogast · Helped
3) iberogast (to help bloating and constipation)
In context ↗ - garden of life prime defense ultra · Helped
4) garden of life prime defense ultra (another user recommended this one, looks good)
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 |
|---|---|
| onset | ME/CFS and fibromyalgia symptoms began after stomach symptomsI've had stomach symptoms lead me into my current cfs and fibromyalgia symptoms which are unrelenting.In context ↗ |
| 2017-06-30 | Dymatize ISO100 whey protein eased spasms and blood flow and warded off PEMI was really suprised when dymatize iso100 helped.In context ↗ |
| 2023-01-24 | very sensitive to supplements, could not stay on EquilibrantI’m very sensitive to a lot of supplements so I couldn’t stick with it long enough to give it a fair shot.In context ↗ |
Adverse events
- Rapamycin / sirolimus“I benefited a bit from sirolimus but had a lot of side effects. Wasn't sure I could tolerate it.” In context ↗ Side effects
- “Surprisingly when I fast, I get the most insane intolerable GERD and acid that makes it hard for me to breathe.” In context ↗ Gut side effects
- Oxymatrine / Equilibrant“I’m very sensitive to a lot of supplements so I couldn’t stick with it long enough to give it a fair shot.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
One quality, or condition you could say that I have with my ME/CFS is spasms on my lower back and upper neck which never (under any circumstances) let up.
In context ↗ - Post-exertional malaise
It wards off my PEM just enough that I have to keep taking it 2-3 times a day.
In context ↗ - Gut problems
the stomach is messed up something horrible in cfs (the most distended part of my body)
In context ↗ - Temperature regulation
One thing that has been helping me quite a bit with feeling cold is Kyolic Aged Garlic.
In context ↗