Bedbound with ME/CFS for a year, now somewhat better after beta blocker and antihistamines
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 years
- Last post
- Oct 2023
In their words
- Condition: ME/CFS
Chronic Fatigue/ME
In context ↗ - At worst: Severe
I was bed bound for about a year
In context ↗ - Now: Somewhat better
I’m functional which is a huge improvement from being bed bound but not anywhere near where I used to be.
In context ↗ - Began after: another virus
I got my symptoms after a viral pneumonia In 2014
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
After a viral pneumonia in 2014 they became bed bound for about a year with POTS, MCAS, EDS and ME/CFS. A year-long wait to see a POTS specialist and a beta blocker took them from bed bound to functional. MCAS was diagnosed seven years in after three tests, and antihistamines and mast-cell drugs helped control it. Ten years on they were functional but far from their old level, waiting a year for an IVIG-knowledgeable doctor.
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What they tried
What they credit
Their words about each treatment
- beta blocker · Helped a lot
I got much better with POTS symptoms once diagnosed and put on a beta blocker. I went from bed bound to at least functional.
In context ↗ - antihistamines · Helped
Seeing my response to antihistamines was vital in her diagnosis before we had that lab positive. ... All these things have helped me.
- cromolyn sodium · Helped
take cromolyn sodium a prescription mast cell stabilizer that coats the guts mast cells before eating ... All these things have helped me.
In context ↗ - ketotifen · Helped
There’s also ketotifen, mononucklast and an injection called xolair ... All these things have helped me.
In context ↗ - mononucklast · Helped
mononucklast and an injection called xolair which helps people with more of the skin manifestations of MCAS. ... All these things have helped me.
In context ↗ - xolair · Helped
an injection called xolair which helps people with more of the skin manifestations of MCAS. ... All these things have helped me.
In context ↗ - avoid high histamine foods · Helped
A lot of people also avoid high histamine foods, as the excess histamine from the diet can make things even worse. ... All these things have helped me.
In context ↗
Approaches: H1 antihistamines · Antihistamines & MCAS · Beta-blockers · Diet · Biologics & antibodies
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 |
|---|---|---|---|
| 2014 | viral pneumonia triggered POTS, MCAS and ME/CFS; bed boundI got my symptoms after a viral pneumonia In 2014. ... I was bed bound for about a year until I was properly diagnosed and managed. | Severe | |
| 2015 | diagnosed with POTS by a specialist after a year-long wait and started a beta blocker; went from bed bound to functionalI got much better with POTS symptoms once diagnosed and put on a beta blocker. I went from bed bound to at least functional.In context ↗ | Moderate | Beta-blockers (unspecified) |
| 2023-10-03 | functional and MCAS well controlled, but far from their previous levelI’m functional which is a huge improvement from being bed bound but not anywhere near where I used to be.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
one of them is POTS which I believe was caused by a viral pneumonia in 2014
In context ↗ - Mast cell (MCAS) & allergies
Mine ended up being mast cell activation syndrome
In context ↗ - Anxiety & low mood
I definitely felt like I was dying at times
In context ↗
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