ME/CFS
Severe → no benefitIll for 10 months
ME/CFS with constant exhaustion, dizziness and pain, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 10 months
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
I myself think I could have CFS along with it.
In context ↗ - At worst: Severe
My life is just constantly feeling like I need to nap and getting dizzy or getting a headache when I try to do things that involve getting out of bed or not lying down.
In context ↗ - Now: No benefit
my health has steadily declined over the past 10 months
In context ↗ - Began after: nothing they could name
Last October I started declining in health having abdominal pain and a kidney infection.
In context ↗
Read from 17 of their posts and comments; links to the 11 this page draws on
Summary
Puffin 22502, 20, in Texas, declined from October 2025 with abdominal pain and a kidney infection, then daily headaches, hives, flushing, anaphylaxis and pneumonia. Xyzal improved the allergy symptoms, but constant exhaustion, dizziness on standing, headaches, pain and unrefreshing sleep remained. With no diagnosis, she used a wheelchair for outings and had her first PEM crash after walking without it. She felt suicidal and without answers.
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What they tried
Also tried
Xyzal· Helpedmigraine meds, otc pain relievers, and even opioids· No changetherapy· No changeextreme bed rest· Worse
Their words about each treatment
- migraine meds, otc pain relievers, and even opioids · No change
tried migraine meds, otc pain relievers, and even opioids. Nothing helped the pain.
In context ↗ - Xyzal · Helped
I’ve been taking xyzal for about two months and have seen improvement with my allergy like symptoms but the exhaustion and dizziness are still a very prevalent thing for me.
In context ↗ - extreme bed rest · Worse
Well I had done extreme bed rest for 3 months and unfortunately didn't see any improvement, if anything I got worse
In context ↗ - therapy · No change
I go to therapy but it barely helps
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| October 2025 | health began declining with abdominal pain and a kidney infectionLast October I started declining in health having abdominal pain and a kidney infection.In context ↗ | Mild |
| late December 2025 | nonstop headache lasting until March, sleep destroyedIn late December I started to have chronic headaches, one of them lasted until early March nonstop, that didn't go away with any medication.In context ↗ | Mild |
| early March 2026 | hives, flushing, anaphylaxis, hospital stay and pneumoniaI was hospitalized for 3 day but never got answers.In context ↗ | Moderate |
| end of March 2026 | allergic symptoms disappeared on their ownThe symptoms that started in march randomly went away on the 27th and have been gone for 3 weeks now.In context ↗ | Moderate |
| May 2026 | partner's two-week visit, outings and short walks without wheelchairsome days I was even able to go on small walks or outing’s without a chairIn context ↗ | Moderate |
| June 2026 | crashed after walking without her wheelchair at her mother'sMy mom wouldn’t let me bring my wheelchair so I had to walk, now I seem to be doing worse and I think I am experiencing my very first PEM episodeIn context ↗ | Severe |
| 2026-06-04 | undiagnosed, exhausted and foggy after a 15-minute walkIt was a 15 minute walk and by the end of it my hips hurt, i feel foggy when trying to think, and I am even more exhausted.In context ↗ | Severe |
Adverse events
- Levocetirizine (Xyzal)“I recently started xyzal and thats actually when I noticed my daytime exhaustion get really bad...” In context ↗ Made symptoms worse
- Radical rest“Well I had done extreme bed rest for 3 months and unfortunately didn't see any improvement, if anything I got worse” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
- Post-exertional malaise
I think I am experiencing my very first PEM episode, it feels scary
In context ↗ - Brain fog
i feel foggy when trying to think
In context ↗ - POTS & dysautonomia
I get dizzy when standing for a long time or when I take hot showers
In context ↗ - Mast cell (MCAS) & allergies
in early march I randomly started having hives, itchy mouth, throat, and skin, flushing, diarrhea
In context ↗ - Sleep problems
Unrefreshing sleep
In context ↗ - Pain & fibromyalgia
Neck and back pain
In context ↗ - Headaches & migraine
I get frequent headaches pretty much daily
In context ↗ - Gut problems
I then started to develop GI issues and was having diarrhea and vomiting often.
In context ↗ - Breathlessness
Shortness of breath
In context ↗ - Heart symptoms & palpitations
daily headaches, neck pain, back pain, and a racing heart
In context ↗ - Tinnitus
Sometimes when I’m dizzy my ears will ring or go muffled
In context ↗ - Anxiety & low mood
I think about throwing in the towel almost every day and just offing myself.
In context ↗