ME/CFS
Severe → somewhat betterIll 8.5 years before improving or writingNeeds ongoing treatment
Severe ME/CFS, now somewhat better with cyclobenzaprine and electrolytes
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 8.5 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I still have CFS/ME/Fibro.
In context ↗ - At worst: Severe
All of these things combined has moved me from severe to moderate.
In context ↗ - Now: Somewhat better
For me fatigue is moderate but pain is severe.
In context ↗
Read from 94 of their posts and comments; links to the 42 this page draws on
- Feb 2022
- Dec 2023
- Oct 2026
- Aug 2021
- Sep 2023
- May 2024
- Sep 2021
- Jan 2023
- Sep 2021
- Sep 2021
- Sep 2021
- Mar 2023
- Mar 2022
- Dec 2022
- Mar 2022
- Apr 2022
- Mar 2024
- Apr 2022
- Jul 2022
- Jun 2022
- Jan 2023
- Oct 2026
- Mar 2024
- Feb 2024
- Aug 2021
- Nov 2021
- Oct 2021
- Jan 2022
- Jan 2022
- Jan 2023
- Dec 2023
- Dec 2023
- Sep 2026
- Apr 2022
- Sep 2021
- Sep 2021
- Apr 2022
- Feb 2024
- Sep 2026
- Sep 2021
- Nov 2021
- Sep 2021
Summary
A Michigan mother with ME/CFS and fibromyalgia, ill for several years, kept a sedentary full-time job but otherwise mostly rested or slept. She credited a mix of medications, especially the muscle relaxer cyclobenzaprine, and daily electrolytes with small gains that moved her from severe toward mild. Crashes from pushing herself set her back, and she was still recovering from a bone marrow biopsy; she lost her job in 2026.
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What they tried
What they credit
Also tried
Propel / sports drinks (electrolytes)· Helped a lotFlexeril (cyclobenzaprine)· Helped a lotMeditation· HelpedGiving up wheat (gluten free)· HelpedFluoxetine· HelpedAntihistamines (Claritin, Zyrtec, Allegra, Benadryl)· HelpedAntihistamines (Claritin, Zyrtec, Allegra, Benadryl)· HelpedAntihistamines (Claritin, Zyrtec, Allegra, Benadryl)· HelpedAntihistamines (Claritin, Zyrtec, Allegra, Benadryl)· HelpedThyroid Support Supplement· HelpedDuloxetine· HelpedElimination, anti inflammatory, Mediterranean and whole food diets· No changeElimination, anti inflammatory, Mediterranean and whole food diets· No changeElimination, anti inflammatory, Mediterranean and whole food diets· No changeGiving up caffeine· No changeMelatonin· No changeTramadol· No changeGabapentin· No changeProbiotics· No changeMild exercise, stretching, and weight lifting· WorsePrednisone· WorseMetformin· WorseAntidepressants (3 different types)· WorseAutoimmune diet· Much worseStaying within my energy window / working in 5 minute segments· Not saidBiofreeze· Not saidBlood thinners (low dose)· Not saidBone broth soup· Not saidSavella (SNRI)· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- Meditation · Helped
I started meditating a year ago and it has helped me
In context ↗ - Giving up wheat (gluten free) · Helped
I do have slightly more energy if I don't eat wheat.
In context ↗ - Elimination, anti inflammatory, Mediterranean and whole food diets · No change
I have tried other diets too because they were supposed to help with CFS/ME, they didn't.
In context ↗ - Autoimmune diet · Much worse
I did the autoimmune diet for 2 months and was so much worse and more difficult.
In context ↗ - Fluoxetine · Helped
I take fluoxetine. I was having sharp stabbing pains along with my muscle aches. It helped with those.
In context ↗ - Propel / sports drinks (electrolytes) · Helped a lot
It helps me tremendously!
In context ↗ - Giving up caffeine · No change
I did. Nope it doesn't make any difference with pain and fatigue.
In context ↗ - Melatonin · No change
I tried it. It didn't help me at all.
In context ↗ - Flexeril (cyclobenzaprine) · Helped a lot
The one medication that made the biggest difference for me was flexeril.
In context ↗ - Tramadol · No change
Tramadol and gabapentin didn't work for me.
In context ↗ - Mild exercise, stretching, and weight lifting · Worse
I have tried mild exercise, stretching, and weight lifting. All of the above affect my CFS.
In context ↗ - Staying within my energy window / working in 5 minute segments · Not said
90% of the time I do my very best to stay within my energy window and not push myself.
In context ↗ - Biofreeze · Not said
a topical like Biofreeze (my personal favorite)
In context ↗ - Antihistamines (Claritin, Zyrtec, Allegra, Benadryl) · Helped
it helped me breath better through my nose, especially at night, so I am continuing to take them
In context ↗ - Levothyroxine · Helped
While it did help a little bit when I started taking the meds, I still have ME.
In context ↗ - Thyroid Support Supplement · Helped
I am pleased with the results. I have just a little bit more energy and I am a little less sleepy all the time.
In context ↗ - Duloxetine · Helped
Duloxetine made me sick for the first month I took it. ... It helps me. Not a lot but some.
In context ↗ - B12 · Helped
Du;loxetine and b12 helped some as well.
In context ↗ - Prednisone · Worse
I have all sorts of negative side effects that I will be living with for the rest of my life.
In context ↗ - Metformin · Worse
I was on it for diabetes for 2 years and never got used to it. I didn't realize how much it was affecting me until I stopped taking it.
In context ↗ - Probiotics · No change
Granted it never helped me or my children when we tried them
In context ↗ - Blood thinners (low dose) · Not said
now I have a clotting disorder and have to remain on a low dose of blood thinners for forever
In context ↗ - Bone broth soup · Not said
bone broth soup, homemade from scratch to name one
In context ↗ - Antidepressants (3 different types) · Worse
I tried 3 different types and all they did was give me side effects and make me emotionally flat.
In context ↗ - Savella (SNRI) · Not said
I am on day 3 of an SNRI inhibitors, which might actually be working for pain management
In context ↗ - COVID vaccination as treatment · Not said
The first 2 shots I was seriously scared I had done permanent damage because the fatigue was so bad for so long.
In context ↗
Approaches: Supplements · Thyroid hormones
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. The first step with a time is 3.8 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2018 (approx.) | ME/CFS onset, diagnosed a few years laterI have only been diagnosed for about 3 years.In context ↗ | Not stated |
| — | lowest point: severe pain, trouble swallowing, bladder control problems, days to recover from a doctor's appointmentWhen my pain was really really bad. It was a 6 if I was sitting resting and at it's very best.In context ↗ | Severe |
| 2021-09 | 3.5 weeks recovering after the trip moving her son into collegeSo it only took me 3.5 weeks to recover.In context ↗ | Moderate |
| 2021-09-27 | back to a 40-hour-a-week job from homeI started working on the 27th (40 hours a week)In context ↗ | Mild |
| 2022-04-09 | thyroid support supplement gave slightly more energyI have just a little bit more energy and I am a little less sleepy all the time.In context ↗ | Mild |
| 2022-04-12 | crashed after job interviews and houseworkBam! Fluffy Lump meet wall.In context ↗ | Moderate |
| 2022-12 | found a combination of medications that workedWell after about 5 years and lots of failed medications I found a combination that worked for me. I was feeling good. I had energy!In context ↗ | Moderate |
| 2022-12-30 | holiday second job crashed her and she lost Medicaidnow I am back to feeling really badIn context ↗ | Moderate |
| 2024-02-29 | crashed after a week of pushing herself and walkingI am crashing today because I pushed myself the last weekIn context ↗ | Moderate |
| 2026-09-13 | thyroid medication for hyperthyroidismMed helped some but I still have CFS. I would say I went from borderline severe to mild.In context ↗ | Mild |
| 2026-09-28 | two months of horrible recovery after a bone marrow biopsyThe recovery has been HORRIBLE! it has been 2 months.In context ↗ | Moderate |
| 2026-10-23 | lost her job; three days into an SNRI for painNote: For me fatigue is moderate but pain is severe.In context ↗ | Moderate |
Adverse events
- “I have liver damage due to meds to control my autoimmune disease.” In context ↗ Liver or kidney problems
- COVID vaccination as treatment“The first 2 shots I was seriously scared I had done permanent damage because the fatigue was so bad for so long.” In context ↗ Side effects
- COVID vaccination as treatment“I had a fever and was nauseous for about 3 days. But the worst part was I even more tired than normal for about 3 weeks.” In context ↗ Side effects
- COVID vaccination as treatment“I had a fever and nausea for 3-4 days. ... about day 5 or 6 the increased fatigue hit.” In context ↗ Side effects
- Duloxetine (Cymbalta)“I have been on Duloxetine for about a year. Yep still have the dry through.” In context ↗ Side effects
- Tramadol“I had to stop taking it because I started liking it way too much. ... It was so hard to stop and I wasn't full on addicted.” In context ↗ Other
- Other minerals and mixes“The first day I took the full dose (2 pills) and I felt like I had just chugged a case of coke.” In context ↗ Side effects
- Duloxetine (Cymbalta)“Duloxetine made me sick for the first month I took it. ... By month two the side effects went away.” In context ↗ Side effects
- Corticosteroid pulses“I have all sorts of negative side effects that I will be living with for the rest of my life.” In context ↗ Side effects
- Corticosteroid pulses“I developed diabetes and hypertension.” In context ↗ Side effects
- Corticosteroid pulses“The hardest part for me was the migraines I would get whenever my dosage was lowered.” In context ↗ Side effects
- Metformin“I was on it for diabetes for 2 years and never got used to it. I didn't realize how much it was affecting me until I stopped taking it.” In context ↗ Side effects
- Salt, electrolytes and fluids“I have done an elimination diet and I am 100% sure it is the Propel causing it.” In context ↗ Allergic reaction / anaphylaxis
- Elimination diets (other)“I did the autoimmune diet for 2 months and was so much worse and more difficult.” In context ↗ Made symptoms worse
- “The recovery has been HORRIBLE! it has been 2 months.” In context ↗ Other
- Fluoxetine (Prozac), Duloxetine (Cymbalta), Antidepressants (unspecified), Milnacipran (Savella)“I tried 3 different types and all they did was give me side effects and make me emotionally flat.” In context ↗ Mood or psychiatric effects
- COVID vaccination as treatment“No, but now I have a clotting disorder and have to remain on a low dose of blood thinners for forever.” In context ↗ Other
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineMast cell (MCAS) & allergiesMuscle weaknessPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
Most of the time I only experience moderate PEM.
In context ↗ - Brain fog
I am less intelligent. I used to have a very high IQ.
In context ↗ - Mast cell (MCAS) & allergies
I have a wheat allergy.
In context ↗ - Pain & fibromyalgia
I have fibro, ME/CFS.
In context ↗ - Headaches & migraine
usually headaches because I get them a lot anyways
In context ↗ - Muscle weakness
I work until the pain level increases or my limbs feel weak.
In context ↗ - Anxiety & low mood
I just lay around and cry most days.
In context ↗ - Flu-like symptoms
My throat is sore. My lymph nodes are swelled and tender.
In context ↗
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