Largely bedbound with ME/CFS for decades, remissions then worse again
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 34 years
- Last post
- Dec 2024
In their words
- Condition: ME/CFS
I’ve been diagnosed since 1998.
In context ↗ - At worst: Severe
I ve been bedridden for two years plus.
In context ↗ - Now: Relapsed
Then I quickly went further down than before.
In context ↗ - Began after: nothing they could name
I had had low energy for a few years.
Read from 66 of their posts and comments; links to the 29 this page draws on
Summary
Diagnosed in 1998 after symptoms began in the early 1990s, Summit 97237 spent decades largely bedbound, with two remissions of several years when she was active. Ritalin, B12 injections, vitamin D and repeated courses of strong antibiotics with prednisone gave partial or temporary help. A doctor's withdrawal of methylphenidate left her in bed for two years until another doctor restarted it. By late 2024 she was severely moderate, mostly flat in bed and living alone.
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What they tried
What they credit
Also tried
Their words about each treatment
- strong antibiotics · Helped a lot
Five full high script of strong antibiotics and prednizone changed my life. I felt like Wonder Woman again,,, for about two months.
In context ↗ - prednizone · Helped a lot
The prednizone. Was really helping. That b12vite and I d go get a job.
In context ↗ - Physical Therapy · Not said
put me in Physical Therapy, put me on Ritalin, and clonapin, and believed me!!!
In context ↗ - Ritalin / methylphenidate · Helped a lot
My blood runs, it helps my pain so much I don’t take anything but ib. I think, I talk, I get up. I eat!
In context ↗ - clonazepam · Helped
My b 12, vit d, clonazepam, and when I can stand it and afford a good Six week session helps so much
In context ↗ - B 12 injections · Helped
B 12 injections do more for my brain fog than anything else.
In context ↗ - vitamin D · Helped
In my case b12 injections And 50 thou iu vitamin d. Is so helpful.
In context ↗ - vit e · Helped
I m on b12 injection and tenthousand iu of vit e. It really helps
In context ↗ - prayer · Helped
what has given me the most help is prayer, and using the verse, l am.
In context ↗ - mayofascia release · Helped
The mayofascia release by someone trained specifically
In context ↗ - foot reflexology · Helped
a good forty minute foot reflexology session can change my days
In context ↗ - joining a gym · Much worse
I joined a gym for help by dr recommendation, pretty much been in bed since.
In context ↗ - cymbalta · Helped
I was changed to cymbalta about four months ago. It’s helping me.
In context ↗ - Benadryl and Claritin · Helped
I ve been taking Benadryl and Claritin for years. Off and on. But it helps when pollin or dogs are around
In context ↗ - ice · Helped
I use ice a few times a day on fair days. Really cools whatever fog there is behind the eyes.
In context ↗ - Tramadol · Helped
Tramadol is helping me rt now.
In context ↗ - pacing · Helped
Just gotta pace it and sleep for long times when I get back.
In context ↗ - vaccines · Helped
I knew when I took the vaccines it was good for me.
In context ↗ - psychiatrist and support group · Not said
I got with a psychiatrist and started a support group.
In context ↗
Approaches: SNRIs · Alternative therapies · Antibiotics · Benzodiazepines · Other drugs and medicines · Stimulants · Supplements
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 | After |
|---|---|---|---|
| early 1990s | onset of illness, working full time as admin and motherthis started early 90s, and freaked me out late 97/98.In context ↗ | Mild | |
| 1995-1998 | heel imploded in a car wreck; three years of reconstructive surgeryI imploded my heel.In context ↗ | Moderate | |
| early 2000 | first remission; started a support group and a pool leagueI think I was having my first remission.In context ↗ | Mild | |
| ~2002 | much worse two years after starting Ritalin and clonazepamBut in two years I was so much worse.In context ↗ | Moderate | |
| ~2014 | joined a gym on a doctor's recommendation and went downI joined a gym for help by dr recommendation, pretty much been in bed since.In context ↗ | Severe | |
| 2020 | felt like Wonder Woman for about two monthsFive full high script of strong antibiotics and prednizone changed my life. I felt like Wonder Woman again,,, for about two months.In context ↗ | Mild | Antibiotics (unspecified) |
| 2022 | bedridden for two years plusI ve been bedridden for two years plus.In context ↗ | Severe | |
| June 2024 | new doctor restarted her stimulant and everything improvedEverything is so much better.In context ↗ | Moderate | Methylphenidate (Ritalin, Concerta) |
| September 2024 | severely moderate; mostly flat in bed, can sit up and go out occasionallyI am severely moderate rt now.In context ↗ | Moderate |
Adverse events
- Corticosteroid pulses“Steroids, tho I now know it helped by depleting my bone mass.” In context ↗ Other
- Everyday exercise and activity“That damn exercise thing was worse referral ever. I crashed and really have never got back to that gail.” In context ↗ Made symptoms worse
- Everyday exercise and activity“I joined a gym for help by dr recommendation, pretty much been in bed since.” In context ↗ Made symptoms worse
- “The knots and relieving tension in my back makes it worth a crash.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I go somewhere for a couple hrs and crash back in bed
In context ↗ - Brain fog
But the Brain fog… it’s the worse.
In context ↗ - Sleep problems
I sleep 30/40 hrs in a row sometimes.
In context ↗ - Pain & fibromyalgia
Exhaustion, pain, no sleep, no exercise, no answers.
In context ↗ - Headaches & migraine
I head having bad headaches
In context ↗ - Light & noise sensitivity
the noise. Was splitting my head
In context ↗ - Heart symptoms & palpitations
Heart kept racing and bp was moderate to severe.
In context ↗ - POTS & dysautonomia
feeling like I’m passing out with nausea
In context ↗ - Temperature regulation
heat cold , circulation sweating profusely
In context ↗ - Tinnitus
If just the tennitus, temp regulation, afib, and pain stopped for a while.
In context ↗ - Anxiety & low mood
I was ready to disappear.
In context ↗ - Flu-like symptoms
I couldn’t get rid of sinus infection, sore throat, low to medium fever
In context ↗ - Neuropathy & tingling
I had had those electrical zaps all over my body.
In context ↗ - Breathlessness
I got immune, cardiac, breathing, fever, itching, fatigue
In context ↗
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