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ME/CFS Severe → somewhat better

Bedridden weeks with ME/CFS, somewhat better with cold showers and B vitamins

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill before improving or writing
Not stated
Last post
May 2024
In their words
  • Condition: ME/CFSMy PCP diagnosed me with CFS/ME last year. In context ↗
  • At worst: SevereI have experienced debilitating, bedridden weeks. In context ↗
  • Now: Somewhat betterthe improvement of those symptoms in turn lessened the fatigue a bit or at least made things more tolerable on my worst days In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on

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Summary

They were diagnosed with CFS/ME in 2023 and have had debilitating, bedridden weeks. Cold showers did not make them worse and helped crashes during PEM; a cold bath once felt resetting. A high-B multivitamin improved cold hands, dizziness and brain fog, and daylight exposure helped tremendously. Vitamin D deficiency treatment was started and Effexor was prescribed, but both were too early to judge. They still reported PEM crashes.

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What they tried

Also tried

multivitamin with high vitamin Bs· Helpedcold bath and cold showers· Helpedseveral different liquid supplements· Not saidnutrition· Not saidnot pushing myself· Not saidvitamin D3· Not saidEffexor XL· Not said
Their words about each treatment
  • several different liquid supplements · Not saidafter it seeming to get worse even after taking several different liquid supplements In context ↗
  • nutrition · Not saidfocusing hard in nutrition In context ↗
  • not pushing myself · Not saidnot pushing myself In context ↗
  • multivitamin with high vitamin Bs · HelpedWhen I started taking a multivitamin with high vitamin Bs, so many other symptoms I thought were normal (cold hands, dizziness, brain fog, etc.) improved In context ↗
  • cold bath and cold showers · Helpedafter getting out I couldn't believe it—I felt completely reset In context ↗
  • vitamin D3 · Not saidI'm taking 50,000 units of D3 once a week for 8 weeks In context ↗
  • light therapy and daylight exposure · Helped a lotexposing myself to daylight to help with circadian rhythm factors has helped tremendously In context ↗
  • Effexor XL · Not saidI was also prescribed Effexor XL to treat mental health side effects In context ↗

Approaches: Supplements

Their path

Very severeSevereModerateMildNear normalRecovered

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. 4 steps say too little to place on the scale and are only in the table. The line stops at their last step that can be placed; how they are now is in the table. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
last yearbedridden weeks with CFS/MEMy PCP diagnosed me with CFS/ME last year. I have experienced debilitating, bedridden weeks. In context ↗Severe
2024-05-06couch-bound for two days after a 30-minute walkcouch bound for two days (triggered from taking a 30 minute casual walk) In context ↗Severe
2024-05-06felt completely reset after cold bathafter getting out I couldn't believe it—I felt completely reset. In context ↗Not statedCryotherapy and cold exposure
2024-05-19high-B multivitamin improved symptomsWhen I started taking a multivitamin with high vitamin Bs, so many other symptoms I thought were normal (cold hands, dizziness, brain fog, etc.) improved In context ↗Not stated
2024-05-26cold showers helped PEM crashesIt didn't make me worse and it has definitely helped with crashes during PEM states triggered by emotional or cognitive overload. In context ↗Not statedCryotherapy and cold exposure
2024-05-26daylight exposure helped; still treating low vitamin DI'm still being treated for the D3 and it's too soon to tell there, but exposing myself to daylight to help with circadian rhythm factors has helped tremendously. In context ↗Not statedVitamin D and sun exposure

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaisecrashes during PEM states triggered by emotional or cognitive overload. In context ↗
  • Brain fogbrain fog, etc.) improved In context ↗

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