Bedbound then housebound with ME/CFS, now somewhat better after pacing and home therapy
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 years
- Last post
- Sep 2021
In their words
- Condition: ME/CFS
I have remitting relapsing ME, generally in the moderate but sometimes severe.
In context ↗ - At worst: Severe
Ten years ago, before I knew how to pace and listen to my body, I was bed bound.
In context ↗ - Now: Somewhat better
I'm a constant float (recently) between 5-7 ... Some days I can get up and walk a mile, but it'll put me back to housebound for two weeks. ... I will take this 5-7, because it's an improvement.
In context ↗
Read from 11 of their posts and comments; links to the 8 this page draws on
Summary
Lake 33072 had ME/CFS for at least ten years, bed bound around 2011 and later a housebound shut-in. Pacing and a year of daily home therapy got them out of the house again; by 2021 they rated themselves 5-7, able to walk a mile some days but housebound two weeks after. Depression medication let them do more and cutting salt made a big difference. COVID in July 2021 amplified their ME symptoms; they credited the vaccine with keeping them out of hospital.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing and listen to my body · Helped
Ten years ago, before I knew how to pace and listen to my body, I was bed bound.
In context ↗ - a therapist who would come see me at home · Helped
Over a year of daily 20 minute therapy sessions I managed to get myself outside.
In context ↗ - depression medication · Helped
when I am on depression medication it allows me to do more but I still have limits I can't cross or I get PEM.
In context ↗ - the vaccine · No change
The vaccine did not bother my current ME condition but COVID did.
In context ↗ - cut sugar and severely reduced salt · Helped
The salt is the real deal for me and I noticed a big difference.
In context ↗ - hot shower / hot bath · Helped
It's probably the number one thing that relaxes me enough to even manage the rest.
In context ↗ - massage sore muscles · Helped
Here are the things that help me get some sleep every night ... massage sore muscles
In context ↗ - Tylenol · Helped
take Tylenol, and liberally spread CBD pain cream
In context ↗ - CBD hot pain cream (Colorado Cures) · Helped
It helps kind of numb and relax the muscles.
In context ↗ - multivitamin · Helped
I also take a multivitamin before bed.
In context ↗ - Reiki point of view videos · Helped
sometimes the repetitive calming movements force me to sleep
In context ↗
Approaches: CBT & mindset · Diet · Other drugs and medicines · Pacing
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 |
|---|---|---|---|
| ~2011 (ten years before August 2021) | bed bound at their lowest pointTen years ago, before I knew how to pace and listen to my body, I was bed bound.In context ↗ | Severe | |
| ~2016 (five years before August 2021) | housebound shut-in, afraid to leave the houseI was a housebound shut in afraid to even step foot into the world only five years ago.In context ↗ | Moderate | Pacing and the energy envelope |
| ~2017 | daily home therapy sessions; got outside into stores and the post officeOver a year of daily 20 minute therapy sessions I managed to get myself outside.In context ↗ | Moderate | CBT and psychotherapy |
| 2021-09-16 | cut sugar and severely reduced salt; low salt gave a big differenceThe salt is the real deal for me and I noticed a big difference.In context ↗ | Moderate |
Adverse events
- “I am a person that does get slightly high feeling from it” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still have limits I can't cross or I get PEM.
In context ↗ - Anxiety & low mood
I still have anxiety.
In context ↗ - Sleep problems
I just came off of a week of insomnia myself
In context ↗ - Pain & fibromyalgia
I'm not saying I don't still hurt
In context ↗ - Brain fog
my brain is fried
In context ↗
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