Mild to moderate ME/CFS with POTS, somewhat better on methylphenidate and POTS meds
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- Not stated
- Last post
- Mar 2026
In their words
- Condition: ME/CFS
I'm mild to moderate M.E./CFS, POTS, Hypermobility spectrum disorder, ADHD (and probs autistic).
In context ↗ - At worst: Mild
I have mild to moderate ME along with some other conditions. I work part time.
In context ↗ - Now: Somewhat better
I'm tolerating being upright better from pots meds. It's more been about adjustments and pacing.
In context ↗ - Began after: nothing they could name
I've spent many years trying to figure out what is wrong with me
Read from 22 of their posts and comments; links to the 17 this page draws on
Summary
The user describes mild to moderate ME/CFS with POTS, hypermobility and ADHD, working part time and crashing often. Low-dose naltrexone over nine months made them wired, anxious and sleepless, and Mestinon for POTS did not help. Methylphenidate gave more energy and focus, POTS medication helped them tolerate being upright, and melatonin improved sleep.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · Worse
Micro dose and I didn't notice anything. As I tried to increase I'd feel anxious and wired and sleep badly so I'd then feel worse in both body and mind. Stuck at it for 9 months then just couldn't keep going
In context ↗ - melatonin · Helped
0.5mg of melatonin which the GP suggested I buy as they won't prescribe it has had a good impact. My sleep is somewhat improved
In context ↗ - Visible app · Helped
Visible app to help with pacing (and realised I had pots and needed salt/electrolytes)
In context ↗ - salt/electrolytes · Helped
(and realised I had pots and needed salt/electrolytes)
In context ↗ - Mestinon · Worse
I was prescribed Mestinon for my pots but it didn't help in fact made me slightly worse. It's so individual, so much trial and error.
In context ↗ - mini pill and evorel conti patch · Helped
Mini pill and evorel conti patch is helping with some of my hypermobile joint pain. It's giving me terrible constipation though!
In context ↗ - Insight Timer app · Not said
I quite like the Insight Timer app and bookmark my faves
In context ↗ - thyroxine · No change
even when you are treated with the UK standard of thyroxine a lot of people like me with underactive thyroid still feel knackered and terrible
In context ↗ - methylphenidate · Helped
I'm on a low dose, instant release 2-3x a day so that I'm in control of it and it leaves my system by evening.
In context ↗ - beta blocker · Helped
I'm tolerating being upright better from pots meds
In context ↗ - pacing · Helped
It's more been about adjustments and pacing.
In context ↗ - shower stool · Helped
Getting a shower stool
In context ↗ - weighted blanket · Helped
Getting a weighted blanket to help with decompressing and sleep hygiene
In context ↗
Approaches: Pacing · Stimulants · Supplements
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 | After |
|---|---|---|---|
| — | ME/CFS onset, cause not identifiedI've spent many years trying to figure out what is wrong with me and it seems I'm a walking bag of issues, many interconnectedIn context ↗ | Not stated | |
| 2024-05-14 | felt dreadful on LDN: wired, tense, anxious, still fatiguedit made me feel dreadful. Wired, tense and anxious mainly and still just as fatiguedIn context ↗ | Mild | Low-dose naltrexone |
| 2025-10-28 | more energy and focus on methylphenidateI've had some good effects from methylphenidateIn context ↗ | Mild | Methylphenidate (Ritalin, Concerta) |
| 2025-11-15 | POTS medication made being upright easier and melatonin improved sleepI'm tolerating being upright better from pots meds ... My sleep is somewhat improved | Mild | |
| 2026-03-07 | low-dose instant-release stimulants plus beta blocker and rest days; a little betterI haven't got it figured out but things are poss a little better with stimulants in the way that i use themIn context ↗ | Mild | Methylphenidate (Ritalin, Concerta) |
Adverse events
- “I didn't realise this and took it - it made me feel dreadful. Wired, tense and anxious mainly and still just as fatigued” In context ↗ Side effects
- Low-dose naltrexone“As I tried to increase I'd feel anxious and wired and sleep badly so I'd then feel worse in both body and mind.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“As I tried to increase I'd feel anxious and wired and sleep badly so I'd then feel worse in both body and mind.” In context ↗ Insomnia from treatment
- Low-dose naltrexone“so I'd then feel worse in both body and mind” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“I felt v v fatigued on it, a bit anxious also and it seems to have worsened my insomnia.” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“it seems to have worsened my insomnia” In context ↗ Insomnia from treatment
- Mestinon / pyridostigmine“I think my heart rate was getting too low on 30mg.” In context ↗ Heart rhythm problems
- Mestinon / pyridostigmine“sometimes I can also feel fatigued after a dose” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“I was prescribed Mestinon for my pots but it didn't help in fact made me slightly worse.” In context ↗ Made symptoms worse
- Progestin-only birth control (mini pill, implant or shot), Estrogen (estradiol)“Mini pill and evorel conti patch is helping with some of my hypermobile joint pain. It's giving me terrible constipation though!” In context ↗ Gut side effects
- Methylphenidate (Ritalin, Concerta)“I had some good effects on 18mg xaggitin XL but 36mg was not good (knackered, breathless).” In context ↗ Side effects
- Methylphenidate (Ritalin, Concerta)“My first week on methylphenidate (xaggitin XL) I was really sleepy and tired and brain foggy.” In context ↗ Side effects
- Methylphenidate (Ritalin, Concerta)“because my POTS symptoms and my evening fatigue are both worse on anything higher despite being better for my ADHD” In context ↗ Made symptoms worse
- Methylphenidate (Ritalin, Concerta)“I wasn't able to up it any more without side effects, and the wearing off wasn't great.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I'm crashing often then I get some level of energy improvements from resting after a crash
In context ↗ - Sleep problems
everything seems to give me insomnia
In context ↗ - Pain & fibromyalgia
Mini pill and evorel conti patch is helping with some of my hypermobile joint pain
In context ↗ - Gut problems
It's giving me terrible constipation though!
In context ↗ - Heart symptoms & palpitations
I make good use of my beta blocker for my heart rate (pots)
In context ↗
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