ME/CFS
Severe → no benefitIll for 20 years
ME/CFS with 20-year decline, cooking causing bed rest, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 20 years
- Last post
- Jan 2024
In their words
- Condition: ME/CFS
I have been suffering from M.E since I was 15
In context ↗ - At worst: Severe
I many times was so exhausted from cooking that when it was time to eat I had to go to bed
In context ↗ - Now: No benefit
I have had a steady decline in function.
In context ↗ - Began after: nothing they could name
I have been suffering from M.E since I was 15 , I have had a steady decline in function.
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
The user had ME/CFS since age 15 with a steady decline over 20 years; cooking exhausted them so much they had to go to bed, they ate twice a day at best and lost a kilo a month. Evening pregabalin for anxiety made mornings better, and caffeine and sugar helped slightly. In January 2024 pharmacy liquid meal replacements finally gave enough nourishment.
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What they tried
Also tried
Lyrica (pregabalin)· Helped a lotenergy drink syrup (caffeine and vitamin B)· Helpedready made meals· Helpedliquid meal replacements (Fresurbin)· HelpedWellbutrin· No change
Their words about each treatment
- Wellbutrin · No change
I tried it but it did nothing for me
In context ↗ - Lyrica (pregabalin) · Helped a lot
the only medication ever to help with my anxiety and feeling awful from cfs is Lyrica ... I also take pregabalin, i got it for my chronic generalized anxiety disorder, but I noticed a dramatic improvement with regards to ME as well.
- energy drink syrup (caffeine and vitamin B) · Helped
they have a energy drink syrup which is mostly caffeine and vitamin b ... Makes me feel slightly better
In context ↗ - ready made meals · Helped
only last year did I “give in” and try ready made meals
In context ↗ - liquid meal replacements (Fresurbin) · Helped
Two days ago I tried liquid meal replacements from the pharmacy ... My god what a relief it is
In context ↗
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 20 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 |
|---|---|---|
| age 15 | ME/CFS began at age 15I have been suffering from M.E since I was 15In context ↗ | Not stated |
| January 2024 | steady decline; too exhausted by cooking to eat, eating twice a day at best, losing a kilo a monthMy function has become worse, I struggle with eating as it takes to much energyIn context ↗ | Severe |
| January 2024 | started pharmacy liquid meal replacements and finally got enough nourishmentfor the first time in a long time my body is getting enough nutrition, it feels so goodIn context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I many times was so exhausted from cooking that when it was time to eat I had to go to bed
In context ↗ - Sleep problems
wake up feeling absolutely exhausted and shattered
In context ↗ - Pain & fibromyalgia
helps the general achy ness and pain i live with
In context ↗ - Anxiety & low mood
the only medication ever to help with my anxiety
In context ↗