ME/CFS
Moderate → no benefitIll for 20 yearsNeeds ongoing treatment
ME/CFS: unable to shower standing, needs a cane, still limited after physical therapy
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 20 years
- Last post
- Sep 2024
In their words
- Condition: ME/CFS
Latest sleep specialist confirmed I've been dealing with CFS for 20yrs.
In context ↗ - At worst: Moderate
I can no longer shower while standing, i need a cane to walk. I tried working for 2 days and I just couldn't.
In context ↗ - Now: No benefit
My health has declined a lot.
In context ↗
Read from 16 of their posts and comments; links to the 12 this page draws on
Summary
Kite 68948, 30, traced their CFS to a severe infection at age 10 and was diagnosed at 25. They worked 32 hours a week, had been a team leader, hit a wall in July 2023, had their hours cut and were fired in February 2024. By 2024 they were on unemployment, could not shower standing and needed a cane, sleeping at best three hours a night. Physical therapy helped somewhat and they hoped to return to 16 hours a week, but 15 minutes of exercise still cost three days.
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What they tried
Also tried
physical therapy· Helpedwalking stick / cane / walker· HelpedAmitriptyline· HelpedZopiclon· Helpedshower chair· Helpeddoing tasks sitting down· HelpedMelatonin· No changelavender based shampoos· No changeweighted blanket, sleep mask, blackout curtains· No changeB12 injections· No changevitamins· No changeSwitch Ringfit· Worse
Their words about each treatment
- physical therapy · Helped
Had some succes with physical therapy so the next step is to try and see if I can go back to work.
In context ↗ - walking stick / cane / walker · Helped
Bought a walking stick on my birthday this year. ... Things have been better with the stick, and I feel more secure outside.
In context ↗ - Amitriptyline · Helped
I have 25mg dosage, tried to lower it to 15, but even tho I had less brain fog in the morning, I had intense mood swings and completely spiraled, so now I'm back at 25mg.
In context ↗ - Zopiclon · Helped
Had Zopiclon for 2 weeks to get sleeping back up to some energy, but after I stopped I went back to bad sleeping.
In context ↗ - Melatonin · No change
I had Zopiclon, Melatonin, tried different lavender based shampoos.
In context ↗ - lavender based shampoos · No change
tried different lavender based shampoos
In context ↗ - shower chair · Helped
I have to sit down while showering, so I bought a chair for it, It does make it more manageable, but it still drains the energy right out of me.
In context ↗ - weighted blanket, sleep mask, blackout curtains · No change
I already have a weighted blanket, sleepmask with bluetooth audio, blackout curtains. Nothing helps.
In context ↗ - doing tasks sitting down · Helped
Doing tasks in a sitting position instead of standing is also very good for me.
In context ↗ - Switch Ringfit · Worse
I bought a Switch Ringfit so that I did not have to go to the gym. I try so hard. But I need 3 days of rest after 15 mins of working out right now.
In context ↗ - B12 injections · No change
I had a deficiency and had injections for a week. Did not feel a lot better tbh.
In context ↗ - vitamins · No change
I've been taking the vitamins for more than a year now, so I should see results.
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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| age 10 | severe infection at age 10, downhill from there; struggled through primary schoolI had a really bad infection when I was 10.In context ↗ | Mild |
| — | collapsed during college after overwork and near-total insomniaYup, my breaking point was hallucinating in a Primark of all places, I just pretty much collapsed.In context ↗ | Moderate |
| age 25 | diagnosed at 25; cut school to three hours a day and still got their degreeHad to stop doing full time school, only went for 3 hours a day.In context ↗ | Mild |
| — | worked 32 hours a week and became team leaderWorked 32 hours a week, even became leader of my team.In context ↗ | Mild |
| July 2023 | hit a wall at work; hours cut to 8 a weekHours got cut, and suddenly, I was working 8 hours a week because I couldn't go higher.In context ↗ | Moderate |
| February 2024 | health declined a lot after being fired; could not shower standing, needed a cane, could not workI can no longer shower while standing, i need a cane to walk.In context ↗ | Moderate |
| June 2024 | some success with physical therapy; hoping to return to work 16 hours a weekHad some succes with physical therapy so the next step is to try and see if I can go back to work.In context ↗ | Moderate |
| August 2024 | got a walker, which raised their baselineI myself found that my walker significantly raised my baselineIn context ↗ | Moderate |
| September 2024 | still exhausted and sleeping badly; 15 minutes of exercise costs three days of restI need 3 days of rest after 15 mins of working out right now.In context ↗ | Moderate |
Adverse events
- Amitriptyline (Elavil)“tried to lower it to 15, but even tho I had less brain fog in the morning, I had intense mood swings and completely spiraled” In context ↗ Mood or psychiatric effects
- Zopiclone (Imovane)“Absolutely hated sleeping on Zopiclon, it felt worde.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I need 3 days of rest after 15 mins of working out right now.
In context ↗ - Sleep problems
My sleep has been horrible for so long, if I was lucky, I had 3 hours a night.
In context ↗ - Pain & fibromyalgia
My body is constantly tired and in pain
In context ↗ - Brain fog
I'd rather have this fog brain.
In context ↗ - Muscle weakness
I was not able to carry anything anymore for a period of time
In context ↗