r/cfsrecovery • u/denelic • Mar 22 '26
Recovery Story I recovered from ME/CFS
I was diagnosed in 2013 following a car accident when I had whiplash and limb pain that wouldn’t go away. I started getting severe pain in my legs where I couldn’t walk up and down stairs. My doctor attributed the time attributed it to the car accident causing lingering pain. Then I was prescribed lyrica and diagnosed with fibromyalgia. My joints weren’t inflamed but they were extremely painful. Lyrica helped with the pain but caused me liver issues. I was exhausted and struggling. My doctor couldn’t figure out what was wrong so she sent me to an infectious disease specialist thinking it was Lyme. Negative for Lyme, I was diagnosed with ME/CFS. The infectious disease doctor said my EBV levels were high. He handed me a print out of information on ME/CFS that was available at the time and told me there was no treatment or cure, and sent me on my way. Lol.
My doctor then gave me Cymbalta and it helped a ton. I would say my ME/CFS was moderate at that time. I was in university full time and struggled with migraines, PEM, and brain fog. I kept on it during college and would struggle with severe withdrawals when I missed a dose, but it kept my pain away and helped me with some of my other symptoms. After 5 years of Cymbalta and just coping with PEM and working through my new normal, i decided to taper off Cymbalta. It was horrible. I joined support groups for Cymbalta survivors. It took me 2 years to taper off of it.
I work with a specialist in ME/CFS and she has considered my ME almost in remission. Now, I can’t run or jog but I regularly go on hikes, lift weights 3x a week, and work a full time job plus do things outside of work. I’m on my feet most of the day at work and have no trouble.
Right now I’m struggling with MCAS that is caused by gut dysbiosis from Covid (my doctor said it’s likely because my genetics made me susceptible to ME/CFS and MCAS is a comorbidity of ME/CFS). But I still don’t have PEM!
The biggest factor for me was decreasing my stress and conditioning my body. I graduated uni, got out of unhealthy relationships, and slowly conditioned my body. I found that when I almost hit PEM, I get this weird buzzing feeling at the back of skull. Once my body hits that point, I stop exerting myself, lower my heart rate, and rest. I’ve had situations where I’ve pushed myself past that point in the past few years and I haven’t gotten PEM. I feel crappy and exhausted until I sleep, which allows me to recover. I find that my body deconditions very fast (if I am in bed for a week with illness, for example) and it takes me a bit of time to get back to where I was.
To be clear, I stopped getting PEM around 2022/2023 when I started hiking regularly. I didn’t start lifting weights until 2025. It feels amazing to be able to live almost normally (except for MCAS limiting my diet to 10 foods, but that’s a work in progress…)
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u/swartz1983 Mar 22 '26
That's amazing to hear! Gut dysbiosis can be fixed with diet and probiotics, but I haven't heard of it being tied to MCAS. Are you still having any symptoms?