ME/CFS with fatigue and pain for over 20 years, somewhat better with B12 injections
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 20 years
- Last post
- Sep 2023
In their words
- At worst: Mild
I've been working full time with CFS my whole working life (almost 20 yrs)
In context ↗ - Now: Somewhat better
getting the right dosage again and addressing vit levels have really helped ... back to confidently managing my workload
In context ↗ - Began after: stress or burnout
the origin of my CFS is related to early (and mostly mother related) trauma
In context ↗
Read from 14 of their posts and comments; links to the 11 this page draws on
Summary
Kestrel 61581 has had CFS for over 20 years, dating it to early, mostly mother-related trauma, and worked full time for almost 20 years with occasional sick leave or short-term reduced hours. Oral B12 supplements and fortified foods made symptoms worse, while B12 injections, the right antidepressant dose and addressing vitamin D, B12 and iron levels helped. By April 2023 they were back to managing their workload, still with the same fatigue and pain.
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What they tried
What they credit
Their words about each treatment
- B12 injections · Helped
After years of managing I've needed to have regular B12 injections this year. It's made a big difference, my body just handles the intake better by injection.
In context ↗ - oral B12 supplements · Worse
I also react really badly to oral B12 supplements and over fortified foods. ... It's a mistake that still effects me 15 + years later
- iron · Worse
High/regular doses of some vitamins do exaggerated my symptoms. B12 and iron are the culprits for me. ... iron if I take a lowish dose every other day, then every other week
In context ↗ - anti depressants · Helped
For me they are an essential part of my weapons arsenal but it took me time to accept that.
In context ↗ - talking therapy · Helped
If you can get yourself some talking therapy it helps. Understanding how things trigger my body to go into flight/fight/faint has been useful.
In context ↗ - food diary / avoiding cow cheese · Helped
20+ years of experimentation has taught me moderate amounts of goats and sheep cheese are fine. Cows milk itself is fine too.
In context ↗ - pausing / dropping hours · Helped
there have been a times when I've either had to get myself signed off sick by a doctor or drop my hours in the short term ... I had to pause to find my way back to relative normal
In context ↗
Approaches: CBT & mindset · Other drugs and medicines · Pacing · Supplements
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| onset | CFS began, linked to early traumathe origin of my CFS is related to early (and mostly mother related) traumaIn context ↗ | |
| 2022 | regular B12 injections made a big differenceI've needed to have regular B12 injections this year. It's made a big differenceIn context ↗ | Vitamin B12 |
| 2023-04 | low point, unable to write a work email unassistedno-longer believing I couldn't write a work email unassistedIn context ↗ | |
| 2023-04 | back to managing workload after antidepressant dose and vitamin levels correctedgetting the right dosage again and addressing vit levels have really helpedIn context ↗ | Antidepressants (unspecified) |
| 2023-09 | working full time, with occasional sick leave or reduced hoursI've been working full time with CFS my whole working life (almost 20 yrs)In context ↗ |
Adverse events
- Vitamin B12“Taking B12 supplements and B12 fortified food basically gives me all the symptoms of B12 withdrawal some of which are very CFS like.” In context ↗ Made symptoms worse
- Vitamin B12“I still struggle from the, I believe, well meaning recommendation to take a very high dose B12 supplement. It's a mistake that still effects me 15 + years later” In context ↗ Made symptoms worse
- Iron infusion / ferritin repletion“High/regular doses of some vitamins do exaggerated my symptoms. B12 and iron are the culprits for me.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I'm saying in my case my body makes stress physical and counts it towards PEM. I still can't handle physical exertion either.
In context ↗ - Brain fog
not being able to find words or straight up forgetting how to pronounce words half way through
In context ↗ - Pain & fibromyalgia
works well under my calfs where the worse of the pain is
In context ↗ - Temperature regulation
I went as far as having an undercut for two years as it was a problem for me during the day in the summer too
In context ↗ - Anxiety & low mood
For me they are an essential part of my weapons arsenal
In context ↗
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