Exhausted with ME/CFS, POTS and burning pain, no improvement from supplements
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 3 years
- Last post
- May 2022
In their words
- Condition: ME/CFS
I have POTS as well has cfs
In context ↗ - At worst: Mild
hobbies I can still do like art and reading and movies. Chatting with friends. Petting my cat.
In context ↗ - Now: No benefit
I'm still exhausted but the medication helps
In context ↗
Read from 10 of their posts and comments; links to the 7 this page draws on
Summary
Stone 90729 got sick at 28 and three years later was still exhausted, with POTS, insomnia and burning pain. A long list of supplements and vitamins gave no benefit, and low-dose naltrexone made sleep easier but left a next-day hangover feeling. Venlafaxine, prescribed off-label for POTS, took the edge off adrenaline surges and regulated sleep, and mirtazapine forced sleep as a last resort. Appointments cost over a thousand.
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What they tried
Also tried
Their words about each treatment
- supplements and vitamins · No change
I tried a million supplements and vitamins and they didn't help me either.
In context ↗ - effexor (venlafaxine) · Helped
My doc put me on venlafaxine (used off label) for the POTS because it increases blood pressure so your heart doesn't have to beat as fast. This helped regulate my sleep immensely.
In context ↗ - mirtazapine · Helped
I'm also prescribed mirtazapine, which as a last resort will put me to sleep for 12 hours.
In context ↗ - LDN · Worse
It seems to make sleeping easier and deeper, but also I feel worse the next day.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 |
|---|---|---|
| 2019 (age 28) | Got sick at age 28I'm 31 - was 28 when I got sick.In context ↗ | Not stated |
| before March 2022 | Venlafaxine and mirtazapine helped POTS symptoms and sleepThe only things that have legitimately helped me are effexor for my POTS and mirtazapine for the nights I can't sleep because it forces me to sleep.In context ↗ | Mild |
| 2022-05-16 | Still exhausted; POTS and sleep managed with medicationsay yes I'm still exhausted but the medication helps ... This helped regulate my sleep immensely. | Mild |
Adverse events
- Low-dose naltrexone“It seems to make sleeping easier and deeper, but also I feel worse the next day. Does anyone else experience this? My eyes feel so sore, and unresponsive.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
I have POTS as well has cfs
In context ↗ - Sleep problems
mirtazapine for the nights I can't sleep because it forces me to sleep
In context ↗ - Pain & fibromyalgia
I had the adrenaline surges and burning pain you're describing in there.
In context ↗ - Heart symptoms & palpitations
it seems to help with some of the symptoms (tachycardia mostly)
In context ↗