ME/CFS with major crashes, now somewhat better after infliximab
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6.5 years
- Last post
- Aug 2018
In their words
- Condition: ME/CFS
Well, I was diagnosed with CFS/ME in 2008.
In context ↗ - At worst: Severe
I was so sick at the beginning I was inpatient on and off for the first several years.
In context ↗ - Now: Somewhat better
I manage okay now, I can do stuff occasionally, I go to doctors appts. But I pace myself, and know where my limits are
In context ↗
Read from 33 of their posts and comments; links to the 23 this page draws on
Summary
A US woman who fell ill in late 2007 was diagnosed with ME/CFS in 2008 and spent the first years inpatient on and off, once too foggy to recall her children's names. From February 2014 the biologic infliximab, given for what was then diagnosed as ankylosing spondylitis (later re-diagnosed as psoriatic arthritis), made her ME/CFS much easier to manage and ended major crashes. Insurance loss forced her off it in December 2016 and pain and symptoms returned; by 2018 she could do only occasional errands.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- limiting my actions / pacing · Helped
Im able to better manage my condition by limiting my actions, and taking good care of myself.
In context ↗ - BiPAP with oxygen · Helped
It just stopped the sensation of panic when I woke up, the gasping for breath, the feeling of being physically stressed.
In context ↗ - hysterectomy with ovary removal · Helped
Having the sucker, both my ovaries gone, no periods, its heavenly. It helped me so much to stablize the CFS
In context ↗ - Lyrica · Not said
I switched from lyrica to gabapentin (generic neurontin) about 3 years ago and I like it better.
In context ↗ - gabapentin (generic neurontin) · Helped
Im on Gabapentin for Fibro, but I think it helps some for the RLS.
In context ↗ - Aspirin · No change
I take it for my heart. I had a heart attack in 2013. I dont think it does much of anything at all.
In context ↗ - Remicaid (infliximab) · Helped a lot
I can tell you without a doubt, that the Remicaid made my CFS/ME much easier to manage.
In context ↗ - Enbrel (etanercept) · Not said
I was on that for 3 years then had to switch to Enbrel (etanercept) just this month because I no longer could afford the Remicaid.
In context ↗ - Effexor · Not said
Not a fan of effexor and the side effects and possibly issues from those drugs to treat Fibro and RLS.
In context ↗ - Amitryptyline · Helped
I take a tiny dose of Amitryptyline (25mg), a non-therapeutic level, about an hour before bed and it helps me to be sleepy and fall asleep.
In context ↗ - Metformin · No change
same here, for many years. Nada.
In context ↗ - thyroid treatment · Not said
But its been a decade now of treatment for it, and I still have CFS/ME.
In context ↗ - prescription vitamin D · Not said
Vit D been low a decade and I have to take RX for it weekly and get into the sun when I can.
In context ↗ - Folic Acid RX · Not said
Im also always right at that line for Anemia, take Folic Acid RX
In context ↗ - B12 shots · No change
I did shots and had zero effect on me
In context ↗ - cold Coca-Cola (original) · Helped
Oddly, a cold coca cola original can help me if I have to get home.
In context ↗
Approaches: Biologics & antibodies · Pacing · Surgery & structural
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 |
|---|---|---|---|
| late 2007 | CFS/ME onset; very ill, inpatient on and off for yearsI got sick in late 2007, and was diagnosed finally in late 2008. ... I was very ill. Forgetting my kids names level sick.In context ↗ | Severe | |
| 2013 | heart attackAfter I had a heart attack, and he wouldnt call an ambulance, I crawled to the phone.In context ↗ | Severe | |
| February 2014 | first Remicade (infliximab) IV for arthritis; felt much betterIT-WAS-MAGICAL. I felt so good, within an hour of starting the IV (before it was even done pumping in me), it was amazing.In context ↗ | Moderate | Infliximab (Remicade) |
| April 2014 | stopped Remicade for eight months; psoriasis blisters and woundsI had to stop getting Remicaid from April to December of that year. And I had blisters and wounds show up on my scalp, hands, patches on my leg, and my feet were covered in them.In context ↗ | Moderate | |
| December 2016 | insurance problems; last Remicade dose, symptoms returningI have been off it now since my last dose in December due to insurance issues. And let me tell you, Im starting to have problems again.In context ↗ | Moderate | |
| August 2018 | managing with pacing, occasional outings, still off RemicadeI manage okay now, I can do stuff occasionally, I go to doctors appts. But I pace myself, and know where my limits are and how to handle them better.In context ↗ | Moderate |
Adverse events
- Other surgery (adrenal, lung, venoplasty)“My blood pressure crashed and POTS kicked in and they didnt know what to do so they did the rest of the surgery manually” In context ↗ Low blood pressure or fainting
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I, too, am afraid of what happens if I have another crash that lasts a few months.
In context ↗ - Brain fog
my marbles are struggling
In context ↗ - POTS & dysautonomia
We often have POTS and OI, which I have.
In context ↗ - Sleep problems
My sleep issues are extreme.
In context ↗ - Pain & fibromyalgia
Im in pain 24/7, but I seem to be functional.
In context ↗ - Gut problems
I was also diagnosed with IBS
In context ↗ - Neuropathy & tingling
this feeling like electricity is running up and down my legs
In context ↗ - Heart symptoms & palpitations
After I had a heart attack, and he wouldnt call an ambulance, I crawled to the phone.
In context ↗ - Vision problems
when I wake up, my eyes dont focus well
In context ↗ - Tinnitus
I have a low grade hum in my ears.
In context ↗ - Muscle weakness
Muscles dont work right.
In context ↗ - Light & noise sensitivity
kinda like too much light and stimulus is getting through
In context ↗
Ask Miruvor AI
Similar stories
-
ME/CFS far less able to do anything for years, now somewhat better on Remicade and Enbrel
Her ME/CFS and several other conditions likely began within a month at the end of 2007, and she was far less able to do anything for about five or six years before stabilising. She rated herself 20 for years and later 30, crediting Remicade, then weekly…
-
Not enough detail to draw a path
Often bedridden with long COVID, pacing helped, then stress and reinfection brought relapse
She developed long COVID in December 2020 and spent six years often bedridden with PEM, brain fog, air hunger, POTS and loss of smell, plus heavy uterine bleeding needing transfusions and a hysterectomy. By summer 2026 she was swimming and walking laps in…
-
Bedbound and housebound with ME/CFS, now much better with pacing and POTS/MCAS drugs
Diana fell ill at 12 in 1998 and was very severe for about 15 years, bedbound for about four years and housebound for another seven or so. Endometriosis surgery moved them to moderate, and treating POTS and MCAS from late 2024 brought them toward mild.…
-
ME/CFS since childhood, could not work, much better with pacing and LDN, still very sick
Tulip 41571 has had ME/CFS symptoms since childhood, badly worsened by a kidney infection about ten years ago and again by a COVID infection in early 2023, after which she could not work for a year and a half. Stopping all exercise and pacing stopped the…