ME/CFS and fibromyalgia pain, somewhat better with DXM and supplements
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 17 years
- Last post
- Jun 2017
In their words
- Condition: ME/CFS
Being so beaten down by ME/CFS
In context ↗ - At worst: Mild
Have to go to work.
In context ↗ - Now: Somewhat better
I've made progress through my last fibro/pain flare with the following supplements & changes
In context ↗ - Began after: nothing they could name
I'd been suffering through my "mystery illness" since I was about 20.
Read from 7 of their posts and comments; links to the 5 this page draws on
Summary
Comet 76860, ill with ME/CFS and fibromyalgia pain since about age 20, began daily doses of dextromethorphan (DXM) around age 31; it eased depression and pain and gave them a new lease on life, though it never cured the CFS and tolerance eventually stopped it working. In 2017 a fibro pain and energy flare led them to add ubiquinol, alpha lipoic acid, pregnenolone, D-ribose, low-carb eating and whey protein, which they said helped.
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What they tried
What they credit
Also tried
Their words about each treatment
- Dextromethorphan (DXM) · Helped
I will say that DXM is effective in treating both the depression and pain of my disorder.
In context ↗ - CBD (Cannabidiol) · Worse
I was experimenting with CBD (Cannabidiol) for my pain issues, and it caused a fibro flare.
In context ↗ - Ubiquinol · Helped
400mg Ubiquinol
In context ↗ - Alpha Lipoic Acid · Helped
600mg time release Alpha Lipoic Acid
In context ↗ - pregnenolone · Helped
30mg pregnenolone
In context ↗ - Cut out 80% of carb consumption · Helped
Cut out 80% of carb consumption
In context ↗ - Whey protein powder · Helped
Increased consumption of Whey protein powder and Coconut Oil/Milk
In context ↗ - Gabapentin · Not said
I am also taking Gabapentin for pain, but I was taking this before I made a lot of improvement, so I'm not sure about its input.
In context ↗
Approaches: Diet · Hormones & thyroid · Other drugs and medicines · Supplements
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 11 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 |
|---|---|---|
| about age 20 (around 2000) | mystery illness began in youthI'm 37 now, and I'd been suffering through my "mystery illness" since I was about 20.In context ↗ | Not stated |
| about 2011 (6 years before posting) | daily low-dose DXM eased depression and painI really believe that DXM gave me a new lease on lifeIn context ↗ | Mild |
| about April 2017 | bad fibro pain and energy/mental health flareI got hit with a really bad fibro pain and energy/mental health problem a couple months agoIn context ↗ | Mild |
| 2017-05-31 | DXM stopped working as tolerance roseBTW, I don't think it works for me anymore. The tolerance is too high to achieve the desired effect without side effects.In context ↗ | Mild |
| 2017-06-16 | progress through fibro/pain flare with supplements and diet changesI've made progress through my last fibro/pain flare with the following supplements & changesIn context ↗ | Mild |
Adverse events
- Dextromethorphan (DXM)“It interferes with sleep unless used properly, and this can exacerbate FM.” In context ↗ Insomnia from treatment
- Dextromethorphan (DXM)“If I've been using it for some time and I skip two days, I will start to feel the symptoms of anti-depressant withdrawal (dizziness, head shocks, confusion, sadness).” In context ↗ Withdrawal problems
- “The tolerance is too high to achieve the desired effect without side effects.” In context ↗ Side effects
- CBD (cannabidiol)“I was experimenting with CBD (Cannabidiol) for my pain issues, and it caused a fibro flare.” In context ↗ Autoimmune or inflammatory flare
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
DXM is effective in treating both the depression and pain of my disorder
In context ↗ - Anxiety & low mood
I will say that DXM is effective in treating both the depression and pain of my disorder.
In context ↗ - Brain fog
I'm slightly less foggy today
In context ↗
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