Practically bedbound with ME/CFS, now much better after steroids and Contrave
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2024
In their words
- Condition: ME/CFS
I have asthma and obviously energy problems with CFS and it helps with both.
In context ↗ - At worst: Severe
When I stopped trying to exercise I went from practically bedbound to able to do short spurts of activities
In context ↗ - Now: Much better
What seems to have gotten me out of moderate to mild is a round of steroids followed by taking Contrave (Wellbutrin and naltrexone), amitriptyline, and bronkaid.
In context ↗ - Began after: nothing they could name
Little by little things became harder and harder and I needed to rest more and more.
In context ↗
Read from 17 of their posts and comments; links to the 12 this page draws on
Summary
A Reddit user with ME/CFS, once a very active gym-goer, declined gradually until they were practically bedbound, spending a week or more in bed after graded exercise. Stopping exercise let them do short bursts of activity, and steroids plus Contrave, amitriptyline and bronkaid took them from moderate to mild, though they still could not shower daily. By June 2024 they felt worse, unsure if a cold, PEM or a lower baseline was to blame.
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What they tried
What they credit
Also tried
Their words about each treatment
- caffeine · Worse
trying to continue my normal routine with the aid of caffeine was making me sicker
In context ↗ - graded exercise advice · Much worse
When I was following the graded exercise advice, I would try to be active and spend a week or more in bed.
In context ↗ - stopping exercise / resting instead · Helped
When I stopped trying to exercise I went from practically bedbound to able to do short spurts of activities
In context ↗ - a round of steroids (prednisone) · Helped a lot
Because then the prednisone makes me feel amazing.
In context ↗ - naltrexone (in Contrave) · Helped
I take naltrexone and it helps me quite a bit.
In context ↗ - Wellbutrin · Helped
followed by taking Contrave (Wellbutrin and naltrexone), amitriptyline, and bronkaid
In context ↗ - amitriptyline · Helped
I can’t sleep without amitriptyline. It has helped my symptoms all around.
In context ↗ - Bronkaid · Helped
I have asthma and obviously energy problems with CFS and it helps with both.
In context ↗ - volume vegetables and fruit diet · Not said
I’ve been eating volume vegetables and lots of fruit.
In context ↗ - tonsillectomy · Helped
If I went back in time, I would do it again ... once they are out life quality is improved, imp.
In context ↗ - brain retraining audio · Worse
my drs made me try that and it only made me aware of how much pain I was distracting myself from so I stopped using it.
In context ↗
Approaches: Other antidepressants · Other drugs and medicines · Pacing · Surgery & structural · Tricyclic antidepressants
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | gradual decline from a very active life (gym, heavy weights, cardio, maintaining a property)Little by little things became harder and harder and I needed to rest more and more.In context ↗ | Mild | |
| — | became nearly severe and practically bedbound while following graded exercise adviceI am a lot more gentle with myself after becoming nearly severe.In context ↗ | Severe | |
| 2024-05-21 | stopped trying to exercise and could do short bursts of basic activityWhen I stopped trying to exercise I went from practically bedbound to able to do short spurts of activities — not to be confused with sports.In context ↗ | Moderate | Pacing and the energy envelope |
| 2024-05-25 | went from moderate to mild on steroids then Contrave, amitriptyline and bronkaidWhat seems to have gotten me out of moderate to mild is a round of steroids followed by taking Contrave (Wellbutrin and naltrexone), amitriptyline, and bronkaid.In context ↗ | Mild | Corticosteroid pulses |
| 2024-06-24 | felt good for a while then worse, unsure whether a cold, PEM or a lower baselineI felt good for a while and I can’t tell if I’m just sick with a cold or something, in PEM, or my baseline is getting lowerIn context ↗ | Moderate |
Adverse events
- Graded exercise therapy (GET)“When I was following the graded exercise advice, I would try to be active and spend a week or more in bed.” In context ↗ Made symptoms worse
- Brain retraining programs (DNRS, Gupta, ANS Rewire, Primal Trust)“Because my drs made me try that and it only made me aware of how much pain I was distracting myself from so I stopped using it.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
When I was following the graded exercise advice, I would try to be active and spend a week or more in bed.
In context ↗ - Pain & fibromyalgia
walking can leave me very tired and sore
In context ↗ - Sleep problems
I still need a lot of sleep, and rest between activities in the day
In context ↗ - Breathlessness
I have noticed respiratory issues have greatly increased since being diagnosed with CFS.
In context ↗ - Anxiety & low mood
Every time something else gets taken from me, I get very depressed.
In context ↗
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