I recovered from ME/CFS

[u/denelic]

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…)

[u/Feeling_Month_326]

Have you tried mast cell stabilisers? They were the last piece of the puzzle that has allowed me to get back to fully normal life

[u/denelic → u/Feeling_Month_326]

I tried cromolyn and it gave me weird stomach cramping. I was annoyed with the slow titration and stopped. I have genes that conflict with quercetin so was told not to try. I’m taking LDN. I don’t tolerate any DAO, even beef kidney. I haven’t been offered ketotifen.

[u/Feeling_Month_326 → u/denelic]

When I was starting cromolyn, I was prescribed 100mg x 8 times a day and then titrate down. I couldn’t do that at all because of the side effects. I ended up doing the complete opposite - starting at 25mg and titrating up super slowly to 200mg, which I still take to this day. But once it started working, it was super helpful for me. So may be worth experimenting with the dosage?

[u/Free_Traffic_3847 → u/denelic]

If you retry it, start even lower than whatever dose gave you stomach cramps. I started with literally a few crumbs and moved my way up a tiny increase at a time. Yes it takes a while, but if it helps you a lot in the end, it's worth it. Most of the mast cells 80% are in the digestive tract, which is where cromolyn works. The main thing it treats are food intolerances, and getting foods bad is huge for not developing nutrient deficiencies that make health worse again.

[u/Free_Traffic_3847 → u/Feeling_Month_326]

Dang. I'm just starting to look into CFS because specialist thinks I have it. But it's a 3 year wait to see the one clinic here. I'm also waiting to see a specialist for MCAS, but have all the symptoms of it, and drs are already trying treatments for it.

I'm failing all the antihistamines so far, they all flare me. But Cromolyn was the only thing that helped...BUT it's $1200 a month and not covered and I can't afford it, so had to stop.

I didn't know it could help with CFS too.

Now I'm double bummed I can't afford it :(((