Bedbound on and off for 10 years with ME/CFS, now much better with naltrexone and Adderall
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 years
- Last post
- Mar 2024
In their words
- Condition: ME/CFS
I've been diagnosed with CFS for a long time.
In context ↗ - At worst: Severe
I use to be bed bound for 10 years on and off (6months on a few off)
In context ↗ - Now: Much better
it helped, I'm so much more active and capable of working, school, dating, hanging out with friends, shopping, hobbies ect. But I still can't stay awake for a full day. And I still use my wheelchair.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Diagnosed with CFS long ago, they were bedbound for ten years, on and off, until a power-assist wheelchair and then low-dose naltrexone and Adderall let them work, study, date and shop again. They still cannot stay awake a full day and still use a wheelchair. They also have EDS type 3 (possibly cEDS), suspected narcolepsy, POTS, gastroparesis, MCAS and epilepsy, and wonder whether their fatigue comes from those rather than CFS.
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What they tried
What they credit
Also tried
Their words about each treatment
- manual chair with a power assist · Helped
I use to be bed bound for 10 years on and off (6months on a few off) until I started using a manual chair with a power assist on the back.
In context ↗ - LDN · Helped
Then I started treatments like LDN and Adderall and it helped, I'm so much more active and capable of working
In context ↗ - pacing · Not said
I often limit my self for pacing because I don't want to make my "CFS" worse because of PEM.
In context ↗
Approaches: Stimulants
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. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | diagnosed with CFS long agoI've been diagnosed with CFS for a long time.In context ↗ | Not stated | |
| — | bedbound for ten years, on and offI use to be bed bound for 10 years on and off (6months on a few off)In context ↗ | Severe | |
| — | started using a manual wheelchair with power assistuntil I started using a manual chair with a power assist on the backIn context ↗ | Not stated | |
| 2024-03-03 | LDN and Adderall; able to work, study, date and shop, still uses wheelchairThen I started treatments like LDN and Adderall and it helped, I'm so much more active and capable of working, school, dating, hanging out with friends, shopping, hobbies ect.In context ↗ | Mild | Low-dose naltrexone |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I often limit my self for pacing because I don't want to make my "CFS" worse because of PEM.
In context ↗ - Sleep problems
But I still can't stay awake for a full day.
In context ↗ - POTS & dysautonomia
standard comorbidities like pots
In context ↗ - Mast cell (MCAS) & allergies
standard comorbidities like pots, gastroparesis, mcas, epilepsy
In context ↗
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