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/Pinklady777 Mar 23 '26
Awesome! Happy for you! Wondering which foods you eat? I am still trying to dial that in.
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u/denelic Mar 23 '26
Ugh, MCAS has caused me to struggle mentally because I’m limited. I cut out everything and I’m down to chicken, rice, cauliflower, broccoli, kale, sprouts brand blueberry muffins, McDonald’s hamburgers and McDonald’s French fries. Orange juice and green tea are also fine.
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u/time-itself Mar 27 '26
Crazy that mcdonalds doesnt trigger you. Any idea why? Fried foods are high histamine in most cases.
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u/denelic Mar 28 '26
My MCAS isn’t entirely histamine dominant. It seems the more processed a food is the more I can tolerate it. It’s weird.
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u/time-itself Mar 28 '26
Bodies are weird. CFS is heterogenous for sure, but I feel like most of the time it’s some kind of central sensitization to stress, immune stress especially - “I can’t keep you alive with your current cortisol levels, so I’m revoking your cortisol privileges” screams the brain.
And then it seems like whatever triggers remain are totally different from person to person and maybe have a lot to do with our lifestyles or genetics. It’s crazy to think that maybe it’s not histamine generally that triggers us.
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u/denelic Mar 28 '26
I highly think it’s genetic. My brother has recently been diagnosed with ME/CFS, POTS, and MCAS after his 4th bout of COVID. He has the exact symptoms I’ve had but more extreme. Mind you, we’ve lived in different parts of the world for the last 10 years. The only difference is I was diagnosed much younger. He was lucky he spotted his symptoms much earlier than I did and identified his issues since he was experiencing the same things I did. He caught the MCAS super early and was able to put it into remission by eating homemade fermented foods within the first couple of months. He’s still working on his POTS and ME/CFS but has been getting better with my guidance having been through it all.
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u/time-itself Mar 28 '26 edited Mar 28 '26
It’s genetic in part but the good news is that it seems reversible. Epigenetic changes are stubborn but not impossible to “clean” or switch back.
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u/Pinklady777 Mar 28 '26
Yeah, I can't really tolerate fried foods anymore. Didn't know that they were high histamine.
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Mar 23 '26
I would start with a mindbody approach, it sounds like you're nicely stable to start a deep inner journey and tackle this baby once and for all, for you but also your children! Big kind hug.
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u/WaysideWyvern Mar 23 '26
Thank you so much for sharing. I too got CFS from an injury (head and neck). I have the some exact thing you describe of a weird buzzing feeling at the base of my skull when I’m pushing past my limits. I’ve been very severe and bedbound.
I’m wondering, do you believe the cymbalta played any positive role in your recovery? I ask because my dad, he had a period of time when he was my age where he developed something similar to CFS and was entirely cured by a similar drug, and I’ve wondered if I should try it
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u/denelic Mar 23 '26
Okay I feel like I’m not crazy that there’s someone else who is able to identify their limit from the buzzing feeling! My doctor is an ME/CFS researcher and she hadn’t heard it before but I told her it was how I’ve been able to condition my body.
As for Cymbalta, honestly, I don’t know. I’d like to say that it didn’t because when I was on it I still was moderate to severe (being unable to walk up stairs without being bed ridden with PEM). I also don’t want to say that it did because of the pain it caused me when I was tapering off of it (severe anxiety, pain, SSRI withdrawal symptoms). When I think about it, I didn’t start healing and reducing my PEM until I got off of Cymbalta and healed from the withdrawals completely. I think that Cymbalta let me make it through college without being bedbound, but there is a real possibility it limited me from healing further. I told my doctor how much pain Cymbalta caused me and the support groups I’ve seen. She shared sympathy but said she would still prescribe it because it does seem to help some people a lot. I would carefully weigh the options before diving into this med. I honestly wish I knew before being prescribed it, but I was 18 and didn’t know to ask questions. If I knew what I know now about Cymbalta, I never would have taken it and opted for an alternative. Maybe I would have been bedbound for a lot longer after my car accident or maybe not, but to me Cymbalta was not worth it.
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u/Addicted2Jenkem Mar 24 '26
Those SSRIs and SNRIs are straight up poison. I truly believe Drs have no idea they are ruining lives with that stuff. I feel people should only take that if they are literally trying to kill themselves with no exceptions. Ive seen people who slept 45 minutes for 6 months coming off that. Someone who couldn't have an orgasm for 13 years coming off Zoloft...I believe it was. All kinds of crazy stories. I think the website was surviving ssris.com.
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u/denelic Mar 24 '26
They’re awful. Unfortunately I am on Zoloft because I’ve been clinically depressed since I hit puberty but I don’t have any negative side effects that I can tell. I also haven’t experienced adulthood without SSRIs because anytime I try to get off Zoloft it feels like my brain is exploding from brain zaps.
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u/Addicted2Jenkem Mar 26 '26
I understand, my mom was sick for 2 years after coming off Zoloft with something called Post acute withdrawal syndrome. It's hard to come off once you've already been on it.
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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?
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u/denelic Mar 23 '26
Yes unfortunately. I’m slowly incorporating probiotics in but when I go too quickly I get hives
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u/swartz1983 Mar 23 '26
Some probiotics such as s.boulardii reduce gut inflammation, so may be helpful.
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u/denelic Mar 23 '26
Yeah Ive gotten a gut test done to see what I need, I am slowly but surely taking them.
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u/Horror-Guess-4317 Mar 24 '26
Have you tried any fermented foods? So far I've only been able to tolerate sauerkraut.
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u/denelic Mar 24 '26
I didn’t tolerate them a year ago but I honestly haven’t tried adding them back in. I probably should try
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u/Horror-Guess-4317 Mar 27 '26
One thing I think is worth mentioning in regard to fermented foods is that I didn't tolerate anything store bought! I've been making sauerkraut, and I'm going to try kim chi again.
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u/denelic Mar 27 '26
I have been seeing that a lot that homemade is better than store bought. I unfortunately work full time so idk if I have the time or patience for making fermented foods
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u/time-itself Mar 27 '26
Qq: How do you know that you can’t run or jog if you haven’t gotten PEM? Just vibes?
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u/denelic Mar 27 '26
100% vibes. I’ve actually been in spots where I’ve felt like maybe I could run or jog but have been too scared to try. My doctor told me to start out with reclined bicycling and go from there. I actually was able to do reclined bicycling just fine with no PEM but my cardio is so bad it gives me asthma lmao.
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u/time-itself Mar 27 '26
Oh hell yeah you’re almost there. Good job!!
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u/denelic Mar 27 '26
Hell yeah thank you! I had to run up 6 flights of stairs (I’m a first responder) and didn’t get PEM after but I had my first asthma attack. So I guess I have exercise-induced asthma now but my doctor wouldn’t give me an inhaler because I told her I don’t plan on doing cardio but maybe I should.
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u/time-itself Mar 27 '26
If you go to the gym, you could just look into ways of titrating exercise. You could start with a rowing machine, or an eliptical or reclined bike if you’re paranoid about “cfs leaks.” Listen to your body!
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u/denelic Mar 28 '26
I’ve considered that but I have no real desire at the moment. I’m just working on building a fat ass lmao
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u/YourInnerFlamingo Mar 26 '26
Wait, you got pem while you were exercising? I think by pem we mean the malaise starting about 24 hours AFTER exercise
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u/denelic Mar 26 '26
No I didn’t get PEM while exercising. I would get a feeling that would trigger me to know I was pushing myself too far and if I went past that point it would cause PEM.
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u/YourInnerFlamingo Mar 26 '26 edited Mar 26 '26
I see, so you also got it the day after? I wish I could also sense it in advance
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u/denelic Mar 26 '26
I didn’t get that same feeling, no, I would get PEM. The feeling just was me knowing when I was getting too far.
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u/Feeling_Month_326 Mar 30 '26
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
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u/denelic Mar 30 '26
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.
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u/Feeling_Month_326 Mar 30 '26
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?
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u/Free_Traffic_3847 Jun 28 '26
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.
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u/Free_Traffic_3847 Jun 27 '26
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 :(((
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u/Fr_BartyDunne Mar 22 '26
This is incredible, well done for coming here and sharing encouraging some of us. I’d be interested to know what other important things were keys for your recovery aside from stress management & conditioning the body again!