Folk
Well-Known Member
So my symptoms started 10 years ago, when I was 17. I'm 27 now.
First I had just some neck pain after piercing my ear and having to sleep on one side for a month. I thought it was just a stiff neck or something, but it never went away. At that time, I was going to the gym, and my lower back and shoulders started to hurt when I exercised. I stopped going to the gym, went to doctors, took anti inflamatories, did physioterapy but that too never went away.
The pain kept getting slowly worse and I went to hundreds of doctors and tried a few drugs (Amtriptilyne, Lyrica, Cymbalta...) with no results and many side effects. Along the way I developed alodynia: the touch of my shirt in my neck would hurt, I couldn't wear heavy jackets etc. The best diagnosis I got was Myofascial Pain Syndrome (not enough trigger points for Fibro). Others said anxiety, depression etc. or nothing at all.
Throughout these years I lived a normal life. Graduated in the university, went out every weekend and heavily used alcohol (which was the best pain killer I ever experienced), I even had a period where I experienced with a lot of drugs which, funnily didn't have half the side effects the medications did (funnily again, cannabis was the worse drug for me).
After I graduated, I got a job but had to leave shortly after it because the pain was getting to intense. I worked from my home, but not enough to pay my bills or close to that, I lived and still do with my mother.
I stopped going to doctors for like a year, which was the heaviest in drugs and alcohol, and also the most depressive one... that was perhaps… 2012. Somehow I decied to get clean (I was never addicted... always been a smart user on that case) and stop all drugs, go to the doctors and do whatever it had to be done to get better.
I went to a few, still no real diagnosis, but they believed the symptoms at least tried Amytripiline again, started taking Ambien for sleep and baclofen. Also, started exercising: walking, running and swimming. IT ALL, but the Ambien, MADE ME WORSE. I developed pain in my legs after a while, which was never a major problem. The allodynia came along, I had to start using baggy pants or the touch of the pants would hurt really really bad.
I kept the Ambien, cut the other 2, and finally one doctor said I had Fibromyalgia after doing all the labwork my insurance covered. I started taking Cymbalta, stopped walking, running and started hydro physiotherapy. I was REALLY doing everything to get better and trying to be positive. The water made me feel really well... The Cymbalta maybe had a 5% effect on the pain with the worst side effects ever experienced (insomnia, no libido, waking up in the middle of the night sweating, having to pee every 5 minutes and if I forgot to take it was like I was on heavy drugs).
I don't remember how, but I decided to start taking green smoothies (kale, celery, fruits etc.). I never believed any of this but I though what the hell... let's try. I was AMAZED when in a week I had like 50% less pain, and like 70% less allodynia.
It felt really like a miracle. I started researching and decided to become vegan (bad bad choice) and stop Cymbalta. Stopping Cymbalta was HORRIBLE. It felt like a Gaspar Noé movie.
After the weaning off effects stopped. I was ok for like a month, vegan and happiest than ever.
Then all of the sudden I started feeling stomachaches. It started getting more and more constant and I had no idea what it was. Everything started getting worse, the pain, the sleep etc.
Again: Doctor after doctor. Same old story. No diagnosis.
It kept getting worse and worse. I developed a whole new list of symptoms: fatigue, light sensitivity, brain fog, headaches, noise sensitivity, MUCH MORE pain and allodynia, confusion, accelerated heart beating and all the CFS package.
That was my first "crash" ever in 7-8 years of Fibromyalgia.
Went to hundreds and hundreds of doctors, and heard it all “depression, anxiety, gayness, past lives, witchcraft (no kidding) etc.” but no one mentioned CFS or FMS… Let’s remember I’m in brazil so CFS barely exists here. I decided to go back to the first doctor that gave me the FMS diagnosis, he talked about developing CFS too (it was like one day after they changed the name to SEID), or he hypostasized that the Cymbalta could have been working and I didn’t notice (It wasn’t, I know. In fact I’ve spoken to a lot of patients who developed FMS after stopping Cymbalta)
I went back to eating eggs, then meats etc. Still no dairy or gluten, went to some doctor that kind of believed me, which was enough for me at that point and he gave me Lyrica. That time it worked. Made my pain bearable, cause I was taking more than 3 Tramadols a day and it wasn’t working anymore, I couldn’t sleep cause the pain was so intense… I couldn’t even touch my legs with the sheets. I would basically have to lie naked in bed. HORRIBLE TIMES.
After starting taking Lyrica things got easier, I could think better what my next steps would be. I stopped eating fruit because I realized I had fructose intolerance (even though I took the breath test here and it was negative, I also did SIBO and it was negative. Later I would take them both again in the US and both were really really strongly positive). The stomachaches got better.
So I started my path to recovery.
I schedule an apt with Dr. De Meirleir (where I took the fructose test) and an apt with Dr. Kaufman (where I took the SIBO test). De Meirleir as I expected said I had Lyme. I didn’t believe so I didn’t follow his treatment. I went then to Dr. Kaufman, he said I was a typical CFS patient and said I probably had MCAS too. Then he prescribed: LDN, Ketotifen, Claritin, Zyrtec, B12 + Methyl Folate and Rifaximin with Neomycin for SIBO.
2015 was a recovery year, I spent most of it homebound, I started dating a girl and somehow I could keep it a secret for a while but after I came back from doctor Kaufman I told her the truth.
Let’s see: at the start of 2015 I couldn’t stand for more than 20 minutes or my legs would start trembling and the pain afterwards was unbearable. At the end of 2015 I went with my girlfriend to the beach to spend New years eve and could walk back and forth to the beach with some minor problems. (the pain was still there and not mild but a looooooooooot better than before).
2016 I tried a lot of stuff. I broke up with my GF and I had to get back out there, to the world… I wanted to. In the beginning I couldn’t stand like 1 hour at a party without massive leg/back pain and I would take a tramadol every time I went out.
Dr. Kaufman added Neuroprotek to the mix. I tried Famvir with no luck (massive nausea).
I did Hyperbaric oxygen. I think it worked a lot but I don’t know cause I kept improving continuously.
I’m supposed to do a Bartonella test in Galaxy Lab (which is REALLY trick cause I have to send blood overseas).
I started to go out more and more. I don’t know if that made my legs stronger again or I was improving with the treatment but I stopped taking Tramadol, even going out like 3 days in a row. The Brainfog went away (at least as far as I can tell), the light sensitivity and noise sensitivity too. The fatigue and pain got better but both still here and pain still the worse symptom.
But let’s look again: In the beginning of 2016 I would go out, and had to take a Tramadol to stay on my feet.
In the end of 2016 I can now go out and dance (I don’t know how to dance haha, so “move”) all night and no Tramadol. I save it for the worst scenarios like if I really overdo it.
I’m really really happy I got this far… I wouldn’t imagine getting back at where I’m now in at least 10 years. That being optimistic, cause I thought perhaps my life was over.
Now I know I mentioned that but I would like to emphasize that what I think made a big difference in my recovery was my diet (No gluten, dairy, processed food, fructose) which I followed religiously. I think I may cheated 4-5 times in 2 years and by cheating I mean really meaningless cheats.
Next steps: Bartonella test, perhaps another round of Rifaximin for SIBO again (my stomach is probably what had the worst recovery, Dr. Kaufman wants me to take it since I can’t do the breath test here to know if I’m still positive), perhaps antibiotics for chlamydia (My IGG are really high according to Dr. Kaufman), try another antiviral, increase Lyrica (that’s on my on… I’m on a small dose: 225mg a day, and the only side effect is tinnitus. There’s no doctor with me on this one) and last but not least Transcranial Direct Current Stimulation which btw I think will be the first one I’ll try (would love to hear about if anyone knows anything).
Now… I still have ups and downs… This week somehow was really bad, I stopped taking Coq10 and now I’m sleeping the whole day. I don’t know if there’s a correlation. My hair is longer than ever (just a little past the shoulders, I'm a man btw) and the touch of it in my back/neck is hurting a lot. But I feel like I’m still on a continuous recovery, with some falls but bigger rises.
Perhaps is to early to say it’s a “Recovery” but I feel like I owe this to you guys, as some people may benefit from reading it (if anyone ever reads this gigantic story haha)
Thanks for all the helps in hard times, we’re still together.
That’s it for now. I’ll upgrade it soon.
First I had just some neck pain after piercing my ear and having to sleep on one side for a month. I thought it was just a stiff neck or something, but it never went away. At that time, I was going to the gym, and my lower back and shoulders started to hurt when I exercised. I stopped going to the gym, went to doctors, took anti inflamatories, did physioterapy but that too never went away.
The pain kept getting slowly worse and I went to hundreds of doctors and tried a few drugs (Amtriptilyne, Lyrica, Cymbalta...) with no results and many side effects. Along the way I developed alodynia: the touch of my shirt in my neck would hurt, I couldn't wear heavy jackets etc. The best diagnosis I got was Myofascial Pain Syndrome (not enough trigger points for Fibro). Others said anxiety, depression etc. or nothing at all.
Throughout these years I lived a normal life. Graduated in the university, went out every weekend and heavily used alcohol (which was the best pain killer I ever experienced), I even had a period where I experienced with a lot of drugs which, funnily didn't have half the side effects the medications did (funnily again, cannabis was the worse drug for me).
After I graduated, I got a job but had to leave shortly after it because the pain was getting to intense. I worked from my home, but not enough to pay my bills or close to that, I lived and still do with my mother.
I stopped going to doctors for like a year, which was the heaviest in drugs and alcohol, and also the most depressive one... that was perhaps… 2012. Somehow I decied to get clean (I was never addicted... always been a smart user on that case) and stop all drugs, go to the doctors and do whatever it had to be done to get better.
I went to a few, still no real diagnosis, but they believed the symptoms at least tried Amytripiline again, started taking Ambien for sleep and baclofen. Also, started exercising: walking, running and swimming. IT ALL, but the Ambien, MADE ME WORSE. I developed pain in my legs after a while, which was never a major problem. The allodynia came along, I had to start using baggy pants or the touch of the pants would hurt really really bad.
I kept the Ambien, cut the other 2, and finally one doctor said I had Fibromyalgia after doing all the labwork my insurance covered. I started taking Cymbalta, stopped walking, running and started hydro physiotherapy. I was REALLY doing everything to get better and trying to be positive. The water made me feel really well... The Cymbalta maybe had a 5% effect on the pain with the worst side effects ever experienced (insomnia, no libido, waking up in the middle of the night sweating, having to pee every 5 minutes and if I forgot to take it was like I was on heavy drugs).
I don't remember how, but I decided to start taking green smoothies (kale, celery, fruits etc.). I never believed any of this but I though what the hell... let's try. I was AMAZED when in a week I had like 50% less pain, and like 70% less allodynia.
It felt really like a miracle. I started researching and decided to become vegan (bad bad choice) and stop Cymbalta. Stopping Cymbalta was HORRIBLE. It felt like a Gaspar Noé movie.
After the weaning off effects stopped. I was ok for like a month, vegan and happiest than ever.
Then all of the sudden I started feeling stomachaches. It started getting more and more constant and I had no idea what it was. Everything started getting worse, the pain, the sleep etc.
Again: Doctor after doctor. Same old story. No diagnosis.
It kept getting worse and worse. I developed a whole new list of symptoms: fatigue, light sensitivity, brain fog, headaches, noise sensitivity, MUCH MORE pain and allodynia, confusion, accelerated heart beating and all the CFS package.
That was my first "crash" ever in 7-8 years of Fibromyalgia.
Went to hundreds and hundreds of doctors, and heard it all “depression, anxiety, gayness, past lives, witchcraft (no kidding) etc.” but no one mentioned CFS or FMS… Let’s remember I’m in brazil so CFS barely exists here. I decided to go back to the first doctor that gave me the FMS diagnosis, he talked about developing CFS too (it was like one day after they changed the name to SEID), or he hypostasized that the Cymbalta could have been working and I didn’t notice (It wasn’t, I know. In fact I’ve spoken to a lot of patients who developed FMS after stopping Cymbalta)
I went back to eating eggs, then meats etc. Still no dairy or gluten, went to some doctor that kind of believed me, which was enough for me at that point and he gave me Lyrica. That time it worked. Made my pain bearable, cause I was taking more than 3 Tramadols a day and it wasn’t working anymore, I couldn’t sleep cause the pain was so intense… I couldn’t even touch my legs with the sheets. I would basically have to lie naked in bed. HORRIBLE TIMES.
After starting taking Lyrica things got easier, I could think better what my next steps would be. I stopped eating fruit because I realized I had fructose intolerance (even though I took the breath test here and it was negative, I also did SIBO and it was negative. Later I would take them both again in the US and both were really really strongly positive). The stomachaches got better.
So I started my path to recovery.
I schedule an apt with Dr. De Meirleir (where I took the fructose test) and an apt with Dr. Kaufman (where I took the SIBO test). De Meirleir as I expected said I had Lyme. I didn’t believe so I didn’t follow his treatment. I went then to Dr. Kaufman, he said I was a typical CFS patient and said I probably had MCAS too. Then he prescribed: LDN, Ketotifen, Claritin, Zyrtec, B12 + Methyl Folate and Rifaximin with Neomycin for SIBO.
2015 was a recovery year, I spent most of it homebound, I started dating a girl and somehow I could keep it a secret for a while but after I came back from doctor Kaufman I told her the truth.
Let’s see: at the start of 2015 I couldn’t stand for more than 20 minutes or my legs would start trembling and the pain afterwards was unbearable. At the end of 2015 I went with my girlfriend to the beach to spend New years eve and could walk back and forth to the beach with some minor problems. (the pain was still there and not mild but a looooooooooot better than before).
2016 I tried a lot of stuff. I broke up with my GF and I had to get back out there, to the world… I wanted to. In the beginning I couldn’t stand like 1 hour at a party without massive leg/back pain and I would take a tramadol every time I went out.
Dr. Kaufman added Neuroprotek to the mix. I tried Famvir with no luck (massive nausea).
I did Hyperbaric oxygen. I think it worked a lot but I don’t know cause I kept improving continuously.
I’m supposed to do a Bartonella test in Galaxy Lab (which is REALLY trick cause I have to send blood overseas).
I started to go out more and more. I don’t know if that made my legs stronger again or I was improving with the treatment but I stopped taking Tramadol, even going out like 3 days in a row. The Brainfog went away (at least as far as I can tell), the light sensitivity and noise sensitivity too. The fatigue and pain got better but both still here and pain still the worse symptom.
But let’s look again: In the beginning of 2016 I would go out, and had to take a Tramadol to stay on my feet.
In the end of 2016 I can now go out and dance (I don’t know how to dance haha, so “move”) all night and no Tramadol. I save it for the worst scenarios like if I really overdo it.
I’m really really happy I got this far… I wouldn’t imagine getting back at where I’m now in at least 10 years. That being optimistic, cause I thought perhaps my life was over.
Now I know I mentioned that but I would like to emphasize that what I think made a big difference in my recovery was my diet (No gluten, dairy, processed food, fructose) which I followed religiously. I think I may cheated 4-5 times in 2 years and by cheating I mean really meaningless cheats.
Next steps: Bartonella test, perhaps another round of Rifaximin for SIBO again (my stomach is probably what had the worst recovery, Dr. Kaufman wants me to take it since I can’t do the breath test here to know if I’m still positive), perhaps antibiotics for chlamydia (My IGG are really high according to Dr. Kaufman), try another antiviral, increase Lyrica (that’s on my on… I’m on a small dose: 225mg a day, and the only side effect is tinnitus. There’s no doctor with me on this one) and last but not least Transcranial Direct Current Stimulation which btw I think will be the first one I’ll try (would love to hear about if anyone knows anything).
Now… I still have ups and downs… This week somehow was really bad, I stopped taking Coq10 and now I’m sleeping the whole day. I don’t know if there’s a correlation. My hair is longer than ever (just a little past the shoulders, I'm a man btw) and the touch of it in my back/neck is hurting a lot. But I feel like I’m still on a continuous recovery, with some falls but bigger rises.
Perhaps is to early to say it’s a “Recovery” but I feel like I owe this to you guys, as some people may benefit from reading it (if anyone ever reads this gigantic story haha)
Thanks for all the helps in hard times, we’re still together.
That’s it for now. I’ll upgrade it soon.
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Happy to hear you're on an upswing at the moment, and hope it continues for you into the new year. I had thought on a walk about an hour ago about doing a year-end review of my own to post here, because 2016 has been one of my most significant improvement years. 
