Pain free from hypermobile CTD/fibro dx, 20 years of pain

Success story I wrote for the journal speak group I was in.

This is my success story from hypermobile CTD and fibro dx after 5+ years of TMS work. I know how important success stories were for me when I started. Mindbody work has saved my life and I have become obsessed with taking my body to its limit. If you don't want to read this long story I've summarized my symptoms and length of time I had them.
Pain was worse at night and in the morning. Pain flared with ups and downs. Many body parts had post exertional pain. Spasms everywhere.

Jaw - Duration: 2 years+. pain, inflammation affecting my hearing, clicking, ringing in ears

Shoulders - Duration: 2 years+. pain, clicking in right shoulder(still have, had previous tendon tear from injury)

Back - Duration: 20 years+. pain, stiffness

Elbows - Duration: 2 years+. pain

Wrists - Duration: 7 years+. pain

Knees/thighs - Duration: 2 years+. pain, clicking

Groin - Duration: 2 years+. Pain

Ankles - Duration: Many many years. pain

Skin - Duration: 2 years+. Rashes and red spots, dry flaky skin, pain everywhere, itchiness

(Note: I may have had inflammation everywhere but could only tell in my jaw and skin due to my affected hearing and my skin's redness and flaking. All of my body parts were getting worse over many years that I figured was due to aging but I am only counting the years these body parts caused me problems. Jaw pain made me want to jump off a building.)

I don't have pain anymore and am living a great life.

Short version of what I think is most important treatment : 1.changing how I thought about pain, 2.facing fear

My chronic pain started when I was 16 years old. I made a right turn near my house and I felt a small stab of pain in my lower back. I didn't think much of it but I still remember as if it was yesterday. Over one year it would become everyday pain. By the time I was in my 20s I would constantly be readjusting how I was sitting. Car rides sucked and physical activity hurt. Doctors, chiropractors, and physical therapists would tell me it's my scoliosis and I have a weak core or its my ergonomics, lack of nutrition. I remember my rehab life being stretches and core exercises and being aware of my ergonomics. I was now someone with a 'bad back' and it was getting worse over time but it didn't stop me from doing what I wanted as I live a mostly sedentary life. Over a decade I tried different treatments but I ultimately accepted it as part of my life and I was just 'unlucky'. But when I turned 30 my life changed forever. I got my first full-time job (yes first full time job at 30. I wasted a lot of time in college) as a receptionist at a hospital in the Bronx. I couldn't stand the job. My back went crazy and even lifting a 10 pound box made me feel like my back was going to tear apart. I worked in the pain management clinic/physical therapy clinic and the therapists told me to go swimming. So, that's what I did. And my back pain went down. But once it went down a bit I was hit with a new issue. I started to develop tightness in my arms near my brachioradialis. I was typing a lot and I would exercise after work then play video games when I got home. I figured it was due to these things. I asked a physical therapist and he told me it's because "the belly of the muscle doesn't get sore", which I found weird because I had been exercising since I was a teenager and I have felt bicep soreness before but whatever I'll rest. I think I toned it down a little but that was it. I figured it would go away so I wasn't worried about it. Then I started to get a little sting in my wrists. It was so tiny at that point that I didn't care and I ignored it to continue doing whatever I was doing. I started putting cream on myself to mask the pain but over six-months to one year the wrist pain became very bad. I could no longer exercise or play video games which was my life. I started going around to all the doctors/therapists I worked with and they gave me all of their treatments. One doctor diagnosed me with tendonitis, another with carpal tunnel, and RSI due to all the wrist work. I tried these physical treatments: wrist strengthening exercises, wrist stretching, massage therapy, cupping, icing, heating, resting, acupuncture, took anti-inflammatories like circumin/bee propolis/ibuprofen, quit drinking flavored water because it was a neurotoxin, quit taking Unisom because it was a neurotoxin, prolotherapy injections, BCP – 157 injections, TB – 500 injections, oxygen pills because my chief doctor told me it's due to a lack of oxygen(which is what TMS theory is based on) , multivitamins, wearing Kinesio tape, wrist braces, and wearing a carpal tunnel device but nothing worked. Later in my journey I will have tried a keto diet, organic diet, and vegan diet. Work was agony and I would try to survive the day thinking the next day will be better. I would come home from work and lay in my bed until the next day of work. I didn't want to quit work and move back in with my parents.

It was at the 2 year and 3 month mark when a psychologist I worked with gave me a book called healing back pain by Dr. Sarno. It was about his Tension Myositis Syndrome(TMS) theory. She may have given me this before but I put it on the drawer in my room and didn't pick it up. I originally took it as some guy trying to make money from a book. But I read the book and it completely sunk in. The following three days I would be pain free everywhere in my body. I was playing StarCraft 2 with my friend which I recorded and still have the video. I didn't understand it. I just remember being so euphoric after reading the book that this was it. At the fourth day the pain would slowly return and I kind of knew it would. There's no way tissue heals magically from reading a book. But I got a taste and from here on out I would be chasing this thing till death. Also, I knew I had a lot of mental issues going on as I was diagnosed with major depression when I was 19 and I spent about four years of my 20s doing heroin/opiates before recognizing how bad my life was getting and quit. I found Nicole Sachs and Journal speak on YouTube and then joined the Facebook group and read her book. Something about the way the book was written portrayed this person did it and made it to the other side. In Sarno's book he said you should use your body normally even with the pain and journaling was a good way to bring subconscious feelings to the surface which is the reason you are having pain. Nicole Sach's book explained the journaling in more detail. So, I journaled every day for 20 to 30 minutes often twice a day and multiple hours on some days. I wanted my life back. I also did meditations and visualizations after the journaling. I did all of this including using my body through the pain. I worked for three months straight die hard gung ho typing away with high faith and low fear but my pain didn't budge whatsoever. I had brief moments of low pain but big deal, pain always does that. I started losing faith in this and was getting thoughts it was just to make money. I thought Sarno's book was similar to a horoscope. Applying traits to the reader they would never deny, like how people with TMS are perfectionists and goodists. Everyone considers themself a perfectionist and goodist.

I continued doing all the work anyway because this was my last hope. I had tried everything modern medicine had offered me. I went on for the rest of a year journaling, meditating and doing visualizations every day. I started using DragonSpeak to journal so I didn't have to feel the pain of typing. I read success stories in the group of people curing themselves of all different things. Some people had success in a mere month of doing the work. How? Other people took three months and worst case scenario I saw one year. I kept the one year mark in my head and thought by one year I will definitely be better. After one full year of doing the work my pain had not moved at all. I had tremendous emotional releases and a few momentary panic attacks from the journaling but no physical change. I also remember journaling about how I eat the same things every single day and how I hated it. The day after that journal entry I couldn't eat my food anymore because I hated it and it was so damn bland. I started to think I joined a cult. I had bought a couple books, bought Nicole's program, and was following all this mind-body stuff. I considered it magical hippie nonsense. Just a bunch of crazies going on about feelings and other things in their life. The success stories had to be fake accounts. But how did I have those three pain free days?

I was also doing almost nothing because Covid lockdown happened. I 'worked' from home three days a week. I was getting tremendous amounts of rest 5 days a week and thought surely my arm pain will go down. It's impossible for it not to. I rested for nearly a year during my first year of mind-body work and it didn't move. I then decided to get a therapist to talk about my life and help me with this. A little bit after starting therapy I moved and started working at a different hospital doing the same job. On-site everyday now though. I noticed a slight change in my pain. It seemed around the same level but it was different. Just to give a description of my pain level during this whole time - I used my phone with my nose, opened doors with my forearm, only ate food I could eat with my hands as I couldn't use utensils, there was no more gaming or exercising, changing clothes hurt, showering hurt, buzzing my face hurt, driving hurt, and I would press buttons with my elbow. I used a foot clicker at work and would try to copy and paste everything that I could. I then broke pencils in half and taped them to my palms to type with. This would later advance to taping them on my wrists and would later advance to me creating an elastic wristband that I sewed together(painfully) and sewed a tiny sleeve onto, then slipped a broken wooden dowel into the sleeve to type. I had dark thoughts of what my life would become. I had seen a number of doctors at this point and everything they offered didn't work. I wasn't giving up on this mind-body stuff. I remembered those three pain free days and I even have the video. What happened? I needed to do more and research more. I would spend so much time online looking at TMS stuff trying to find success stories similar to the pain I had. I would also spend a ton of time looking at conventional diagnoses.

At about the 3-4 year mark of my wrist pain and 1 1/2 to 2 year mark of my mind-body work I started getting a rash on my face and my teeth started to hurt. I already had 7(4 wisdom) teeth pulled at this point in my life and then I pulled another two more. Replaced 3 with implants. The pain was just too much and the endodontist, dentist, and oral surgeon couldn't find a reason for the pain. This later turned into jaw pain. I would sit in my chair at work in the dead cardiology clinic and try to rest my jaw and arms. I was also still trying physical stuff up to this point as I didn't fully believe the mind-body stuff. I was still doing different stretches, taking hot baths, doing different jaw treatments I found on YouTube. Changing my diet and so on. I could tell my wrist pain was slightly better because I cut a steak some nights. This was too difficult previously but I could manage sometimes to eat a meal a day with a fork. However, I didn't know if it was due to using them less or mind-body work.

Then my friend helped me get a new job as a quality assurance tester at the company he was working at. Best job ever. I was working from home every day and my friend, the dev, was my boss. The job was perfect too. I could use Dragonspeak to type everything I needed. I figured in six months my arms should be cured as I would get nothing but rest. I was still doing the mind-body work and the therapy. I had added different visualizations to bring out more emotion and was trying to be kind to myself as that was one of the things Nicole and TMS coaches teach. I would use a program called cameramouse that would move the mouse following where I moved my nose. I still couldn't do much and it was still very bad. For some reason even moving the mouse was too painful even though I've done this at the previous jobs when there was commotion and I didn't notice as much. This was about the two-year mark of doing mind-body work and over the four year mark of my wrist pain. As the months went on in my new job my jaw got extremely bad. I couldn't say "Mouse click" anymore to click the mouse so I taped an ergonomic mouse to my armrest and I would move my hips to move the chair and click the mouse into the desk. At my jaws worst I couldn't chew so I would blend bananas/drink shakes. I lost 15 lbs. I was spitting into a cup every 10 seconds as swallowing hurt(made worse by swallowing OCD) and I would shove my head between my couch pillows cause it gave me some relief.

I forgot to mention all of the doctors I went to up to this point. Besides the tendonitis, RSI, carpal tunnel diagnoses from the pain management doctors, I went to two orthopedic surgeons. One shrugged me off and said its just tendonitis(early in my journey) and the second orthopedic surgeon took an MRI and x-ray of my wrists and said I had a tear in each wrist and mild arthritis in my left thumb. Medium grade tear in my left wrist and light grade in my right wrist which is why I felt more pain in my left wrist. He said I shouldn't be feeling any pain at all because half the people walking around have these tears and don't feel pain. He told me to work on my anxiety. I told other doctors what he said and they said he's not supposed to say that. Ironically he was right. I had also gone to a rheumatologist when I started my new job when only the wrist pain was bad and the rheumatologist looked at me for about five minutes and asked me to perform movements with my hands. Because of my hypermobility he said "it's your connective tissue." He LITERALLY shrugged when he said this. He diagnosed me in five minutes and then did blood work and genetic testing on me. I had done a ton of bloodwork from a bunch of doctors previously for lyme, ciliac, low test count and found nothing. Had EMGs done and only found mild carpal tunnel but nothing significant and not enough to explain how spread out my pain was. After he did the genetic testing I didn't call back for the results as I was scared and also still had faith this was due to my mind. He said I can take gabapentin but as I get older my joints won't be able to take it anymore. He also said "at least you know what it is." Hey, you're gonna die next week but at least you know! I had also gone to a testosterone clinic that turned out to be a bro clinic where this dude was giving me 200 MG's of testosterone which I cut down to 100 MGs and it was still too much. I eventually went to a real endocrinologist who said my testosterone level is normal and has nothing to do with my pain. The endocrinologist agreed with the rheumatologist's diagnosis that it's my connective tissue. He also said "at least you know what it is." I found it strange that doctors would rarely doubt other doctors diagnoses and how absolutely sure they were of their own diagnosis.

Anyway at about 2 1/2 years+ of doing mind-body work and 4 1/2 years+ into wrist pain my knees and elbows got bad. The wrist pain felt like it went down a little but they were still not capable of anything really. The jaw was very bad at this point and I kept remembering the rheumatologists words in my head that its my connective tissue. I was losing faith in mind-body but kept doing it out of desperation. I went back to him and got the results of my genetic testing. He found I had a genetic mutation in my FLNA gene on the Ehlers-Danlos panel. It was a heavy hit. I'd been doing TMS work for 2 years+ every single day, researching, watching videos, looking at success stories. Constant pessimistic thoughts of doom battling hopeful thoughts. "This was all great for those people but I have a REAL condition. They have some wimpy dimpy nothing pain." Constantly weighing evidence that my problem is physical versus psychological. My mom, an NP, diagnosed me with fibromyalgia and put me on Cymbalta because I couldn't take the pain anymore of mainly the jaw. The knee pain was very bad and I couldn't bend my knees for too long and I had to sleep with my legs straight and getting down the stairs some mornings was difficult. The elbows had pain from any pressure whatsoever. It's funny because the rheumatologist never mentioned Cymbalta to me which is what a lot of Ehlers-Danlos patients are on. I think doctors have no idea the level of pain someone is in unless you tell them what you physically can and can't do. If I tell someone I'm in brutal pain it means nothing, but if I tell them I'm moving the mouse with a sensor attached to my nose and clicking a mouse thats attached to my chair by swiveling my hips they say "jesus, thats Stephen Hawkings shit." Most of the time people just think you have a low threshold for pain and you're a p***y. The people in your life don't want to hear about your complaints anymore. We get it, you have wrist pain, move on. When my pain was at its worst I would lay in bed not able to sleep because of the pain and anxiety of thinking I have connective tissue disorder for the rest of my life and it will eventually disable me. I also had horrible inflammation in my ears that caused hearing problems. Loud sounds would hurt me. And at night there would be terrible ringing in my ears. An ENT told me it's due to eustachian tube inflammation. He gave me anti-inflammatories that I took and they did nothing as per usual. I told myself I was going to get euthanized. I had already been fighting my wrist pain for about five years at this point and doing mind-body work for 2-3 and the pain only spread to different parts of my body. I thought the rheumatologist was right. Why did I believe in magical hippie nonsense that promised to cure me? Who did I think I was anyway challenging the medical field and the public? Challenging Google. I emailed Dr. Schubiner because I was in total darkness at the time probably due to the comorbid anxiety. In my mind the pain was permanent and would eventually disable me and my life was over. I barely slept and I couldn't smoke weed anymore as I could have a panic attack. I cared about nothing. Any non pain problem in my life was meaningless. Everyone else's problems are stupid nothing problems. Dr. Schubiner emailed me back saying my connective tissue disorder can be cured because the immune system is controlled by the mind. I needed this email even if I didn't wholeheartedly believe it. I finally saw a geneticist who specialized in my gene mutation and Ehlers-Danlos syndrome. The rheumatologist told me that some geneticists will say this means nothing. When I asked him why he replied "because they are old." This geneticist was young. I'm screwed. It felt like going in for results of an HIV test. Surprisingly she said the mutation has to do with my heart. Made sense since my mom gave me the hypermobility and my mom's side of the family had heart problems at birth with one of my aunts being disabled. She said my skin was only a little stretchy and I only have small joint hypermobility - hands and feet. I would later get an x-ray of my shoulders from another orthopedic that showed my shoulders slipped out lower than they should. I got my heart checked out with no identified problems.

This was about the time my recovery started to take place. Over the next six or nine months on Cymbalta my jaw pain had gone down enough to where I felt I could get off the Cymbalta. I wanted to know if it was the Cymbalta making me better or am I getting better naturally as I was continuing to do more mind-body work and using my body despite the pain and working with my therapist. My pain levels kept decreasing at a snails pace even after coming off cymbalta.

I eventually discovered a neuroscientist named Lorimer Moseley on YouTube. I watched a video called "pain, the brain, and your amazing protectometer." FINALLY! Science behind all of the stuff I've been doing. He went over how networks of neurons in your brain learn over time and how a sensation travels through your spinal cord to your thalamus where more parts of your brain then determine if that sensation is dangerous or not. If it determines its dangerous you have pain. If it determines it's not dangerous you do not have pain. Scientifically complex but also plain and simple. Pain also had to do with fear. He went over the tests they run showing people a red light versus a blue light and how when seeing the red light patients will have more pain. He said something similar to Dr.Schubiner - that the mind influences your immune system and the new model of pain involved the immune system and nervous system as they are required to work together. I watched all of his videos and then I found videos of Tasha Stanton, another neuroscientist who went over testing for how the brain can increase swelling in a body part or stiffness due to fear. This had put me into overdrive. It's impossible to find anyone in real life who follows mind-body work if they even believe it. Hardly anyone believes it and almost no one believes lowering your pain with this stuff can be achieved because no one knows anyone in person who's done it and the mere thought categorizes you as a loon. That would go through my mind. At this point in time I couldn't find anyone in person who even knew about the stuff let alone considered it real. Presently I don't consider it so amazing anymore because of how much information we have and how many recovery stories there are despite the OVERWHELMING pushback from people. In this archaic time it's magic but in the future this will be the norm. Right now you're going against the world. You're going against almost everyone you come across in real life. Everything you've observed. Everything you were taught your entire life about the body and pain. Against almighty googles "incurable" label for your disorder. A couple of people in my life were on board with this stuff but for the most part the closest you'll get from people is : "yea totally the mind does all that shit. But anyway, that's inflammation. you should get rest and eat better. And go to physical therapy bro." I would tell myself get off your high horse that you're going to be some pioneer. I recognized I was partly trying so hard because I wanted to prove I was right in the face of almost everyone looking at me like I'm crazy. Also, I had always wanted an adventure when I was a kid but everything had been discovered. That's what this was for me in a way. I was venturing into new science as a test subject and on some level it was very exciting as long as I could make progress. I became obsessed with working on my fears. I was a terrified person and still consider myself a scared person. Almost every dream I've ever had in my entire life has been scary dreams. Giant tidal waves or monsters coming after me.

I realized I had a terrible fear of ghosts and it was a perfect obstacle to overcome to retrain my brain (more in treatment section). I started attacking everything I felt nervous from. I was trying to share more personal things with my therapist to get over the fear of being vulnerable. My journaling had slowed down after the three year mark but I still did visualizations. Cymbalta was now completely out of my system and my pain had not increased. What was also strange was the wrists, jaw, knees, and elbow pain all balanced out to be the same level of pain between each other and it didn't matter how much I used one body part more than the other. By the following day or 2 everything would reset. None of my body parts were being damaged by physical use. I also joined recovery international to work on my anxiety. They would have these affirmations they would call 'spots.' A good one was "perfection is a hope, dream and an illusion." I would also repeat things I heard Lorimer Moseley say like "this is how the brain works." Or Dr. Schubiners "I'm safe." I created my own. "There are no consequences" and "this doesn't cause pain." It didn't matter if my pain wasn't lowering because this is how the brain works regardless. Everyone's brain gets better at producing pain and there are no exceptions. It was up for debate if it's reversible. Lorimer portrayed brain retraining as a cure all for every pain but later said they have not seen a change in cancer pain or spinal injury pain. Luckily I didn't have either of those. I thought either I have TMS or I have some kind of Ehlers-Danlos but maybe I can at least lower my pain.

Something had been set in motion. All of my pain started to go down ever so slowly. It would have been imperceivable if I had not had been hyper focused on my pains every day. A big no no in mind-body space but I couldn't stop myself. I could tell over 3-6 month periods the pain was decreasing because I was doing more with my body. My wrist pain had actually been lowering for 2 years at a snails pace but I didn't consider it. I continued doing all this TMS work, fear work, learning and watching videos and as the fourth year of mind-body work ended my life was coming back. I was starting to exercise again, play games again, I could work with my hands, talk with my mouth, bend my legs and elbows. My back pain of nearly 20 years lowered to such degree I could lie on my stomach again. Don't even know how long ago it was when I could do that. My forearms were so weak at this point from not using them for 5 1/2 years that just doing shrugs and lat pull down was too much work on my forearms. As the months went on the strength came back and it became easy to lift cases of water pain-free.

Just when I thought I was home free my ankles, shoulders, groin/left testicle, and skin got worse. They weren't as bad as my jaw, wrists, elbows, knee pain at their peak but they were upsetting me. It would occur when I walked or did some push exercises for my shoulders where the pain would really act up and prevent me from proceeding. I needed to adjust how I slept, putting a pillow to wedge me up at about a 45 degree angle. I was at a point disabled people would kill to get to but bad compared to normal healthy people. I had a good deal of my life back as long as I took it easy. But I wanted my whole life back. I've come too far now to stop this. Playing video games for a little and being able to have a career still wasn't enough for me . I wanted to exercise often like I used to. I wanted to play games as long as I wanted like I used to. And I wanted to not have bothering pain everyday. I wanted to be limitless honestly. My right ankle and right shoulder were already bad which I attributed to an injury in my 20s. I could walk for about 30 minutes two days a week with very low pain. That alone is tremendous I know compared to many people out there. Resting my arms on my armrests would eventually hurt my shoulders too much. My abdomen in general was just so tight it felt like it was tearing. It was the same with my thighs . I didn't mention my symptoms also included spasming in all my body parts. I rather enjoyed the spasming because it was a sign there was activity going on and the body part wasn't 'dead'. I had already watched countless Ehlers-Danlos videos and they would talk about how it's due to the laxity in the connective tissue that makes your thighs tight or something like that. I still believed that some of my issues were due to my hyper lax tissue. I had a hernia when I was born which is a sign of Ehlers Danlos along with scoliosis. I figured these three pains aside from my skin were due to previous injuries. I remembered Lorimer Moseley going over how the brain over protects injured areas because it remembers. I still wasn't sure I could lower these pains. I also read another neuroscience book that goes over sympathy pains and just figured the left ankle and left shoulder hurt due to that. As a little more time went on my jaw, wrists, elbows, knees, back, ankles, shoulders, were the same. (Looking back now, they were all still kind of bad. You live with pain for so long you forget what it feels like to feel good). The injured ankle/shoulder were more problematic. My skin had become very sensitive and my elbow skin would hurt from friction or my forearms would hurt if I left them on my legs for too long. It was also very itchy, flaky, and could get red. For 2 years I thought it was just due to being at home on my couch and on my computer for too long but when it got worse I knew it was not ergonomic. I was still not on board with mind-body 100%. I considered everything could also be genetic and I had merely lowered my symptoms with mind-body. I undoubtedly had made progress as most doctors wrote me off due to the length of time of my pain. But as long as I still had symptoms there could be something genetic going on. My connective tissue is definitely hyper lax and this would sit in my mind. I needed to be completely cured or I would always think I have some issues going on.

About the 4 year mark of TMS work I couldn't handle my skin anymore. My shoulders got worse and I exercised lightly maybe once every 2 weeks. My groin got worse and my ankles were as bad as my shoulders. I felt like I was back to where I was a year ago. Can't escape this and my future is grim. I started journaling more, doing PRT, fear work, phobia work, therapy once a month, behavior changes not being so nice and caring more about myself or how I feel, visualizations facing past fears or using my body. I would read the TMS wiki a lot and this idea of acceptance was consistent in most success stories which to me should be renamed to 'temporary acceptance while thinking about your pain free future' (too long?). I went to a dermatologist for my skin but she didn't address my skin pain. I went to her months later and she diagnosed me with some skin disorder. My whole body hurt all day and night from my skin. It was unrelenting. I never knew how painful and impactful skin issues could be. Just feeling itchy and uncomfortable everywhere along with the pain. Whatever, I pushed on like I always did trusting in TMS and my king Dr.Sarno. Luckily it only lasted some months.

2 months later everything finally makes a substantial drop and I had gone into happy mode again. I had gone to Disney with my family for a week and my back was invulnerable. Not one uncomfortable sensation in my back for 1 week including the plane ride. This was impossible. I've had back pain for 20 years. If I was 17 years old I would have had more back pain on this trip. Only at this point was TMS finally becoming real for me. At the 50 month mark. The other symptoms could still be dismissed as an autoimmune thing that went away on its own but not my back. It was too coincidental that my 20 year back pain would go away the same time my other pains were going down. And no doctor told me "Don't worry in 20 years your back pain will go away. Pain tends to go away as you get older." I'm an extremely cynical and skeptical person. The week at disney was surreal. Surreal and lonely at the same time. I felt like I was drinking from the fountain of youth and not 1 person could relate with me. Only success stories on the internet but you never know what you're reading. I always thought there'd be a bloodbath to drink from the fountain but there's no one here. No one believes it even exists.

To summarize the end - my pain and inflammation in my entire body slowly went down over another year until I was completely symptom free everywhere. Every body part including my 20 year back pain and even my injured body parts. Scoliosis, tears in my wrists, tendon tear in my right ankle, tendon tear in my right shoulder, hypermobile connective tissue, none of it mattered. I weight train nearly every day and I am training for the NYC marathon. I can stay on my computer for 12+ hours a day. Sit, stand for hours and hours without pain. I eat whatever I want. I don't take any medications. I don't do any type of rehab. I don't even get much sleep. 100% of my symptoms were my brain. I feel 15 years old. It feels like having wolverines regeneration. I have no pain. I have been physically limited since I was 17 and this is all kind of new to me. My perception of life has completely changed. I appreciate how amazing life is just being pain free. Living an able, pain free life is the top of the mountain. It's better than I imagined it to be. Normies have no idea how good their life is. I think everyone should go through a multi year bout of horrible pain and disability without knowing if they will ever get better. The darkness from thinking the pain and disability is permanent. It has made me stronger to know I can handle a lot and get through it. To know I'm not crazy. To believe in myself even when almost every outside source said I was wrong. I no follow something just because the majority does. Rehab videos get 100,000s of views with hundreds of comments talking about having the right form to prevent pain and what exercises you should do to fix some body part. They're all wrong. "You should be eating this to reduce your symptoms!" Nope. I know for many people this stuff seems impossible to believe. Even people in the TMS world still have doubt and I've seen mind-body people still blame aging, diet, ergonomics. I don't believe in aging pains or wear and tear pains. I accept that I live on a different planet now. I am grateful the journey took this long because if I got better in a short period of time I wouldn't have cemented mind-body into my brain. 20 years of back pain turned out to be the best thing that ever happened to me. I will never stop practicing this and I will continue to push my body to its limit. I have tremendous sympathy for disabled people now and understand the darkness some people face. That being said, I do not have sympathy for half of the people in pain. A success story is posted in chronic pain reddit and the top comment is attacking the OP for gaslighting and spreading "ableist porn" with half of the total likes going to that comment. Facebook comments on curable or neuroplastic ads saying it's pseudoscience. Posts on r/science about how exercise makes ME/CFS patients worse. (The most common condition cured from TMS treatment btw next to long covid) People are offered a free, convenient, potential cure and half of people spit at it. It's such idiocy and weakness. I'll save you the time of reading all the pain forums. This is the mainstream response in a nut shell: "What?! You're telling me I can be cured?! For free?! F*** you ableist scum!" And: "I have to work on myself?! So it's MY fault now?!" Yes, there are diseases that can't cured with this work and this stuff never worked on my ingrown toenail or teeth but its a tiny tiny fraction of the chronic pain population. 85% of people get better according to the boulder back pain study and I think it'd be much closer to 99% if you consider the small time frame they give these patients to recover.



These are all the methods I used. Most of this doesn't need to be done and plenty of people get better from doing only a few things.

(Most important) Learn TMS and neuroscience - Sinking The knowledge into my head. This is how the brain works. Read the TMS/Neuroscience books. I read 'Healing back pain' and 'Divided mind' by Dr. Sarno, 'Unlearn your pain' by Dr. Shubiner, 'Meaning of Truth' by Nicole Sachs, 'Manage your fears manage your anger' by Dr.Low(not about TMS but very helpful psychologically), 'The Tell-Tale Brain' by Neurscientist Ramachandran, 'The way out' by Alan Gordon. Watch the TMS videos, success story videos on youtube like Dan Buglios videos. Read the success stories on JournalSpeak, Tms-Wiki, watch the neuroscience videos with Lorimer Mosley, Tasha Stanton, David Butler. This was done over the entirety of my journey changing my brain from the old way of thinking about pain to the new way and it required repetition over a period of time. It's important to watch multiple people who have credentials around this material because a) multiple people with credentials show credibility to the material and b) people innately accept advice from those with credentials ie they have a degree about this stuff or they personally got over their pain. There was always doubt in my mind if I was injured or had a condition or I'm just old but I continued regardless. I didnt believe 100% for a long time. My belief rose as my pain decreased until I got to a point where I accepted it as fact and this was simply the answer to my pain. I needed neuroscientists to explain in detail how the brain generates pain to help get rid of the doubt that I'm listening to nonsense. If a pain neuroscientist says this is how chronic pain works then that's that.

(2nd most important) Fear work - Challenging my fears and lowering my fear of pain. Teaching my brain through a LOT of reinforcement that I am safe and being afraid doesnt mean I'm in danger. According to tests, people will have increased pain when in a fearful state. Increased pain when shown a red light vs a blue light when given a painful stimulus. Swelling in the knee of someone with OA will increase when that persons knee is in an imaging device displaying the leg detaching when someone is pulling on it. A person will swear there is more stiffness in their back when they close a creaky door vs a swooshy door in a clinic room. I went into attack mode with this stuff. Anything that made me nervous I went towards even if I was a little nervous. If you get nervous going into the grocery store then you need to go into the grocery store. If you get nervous going over bridges then you need to go on a bridge etc etc. I was focused on changing my brain's response to fear and teaching it that fear does not equal danger. It takes a LONG TIME.

I addressed my phobia. I had phasmophobia(the fear of ghosts and the paranormal)for over 30 years. My family was very religious and I went to a religious school from grades 1 to 8 .I believed all the stories of spirits interacting with the living, Angels and Demons fighting over my soul, God punishing me for doing something wrong. I would leave the TV on when I slept even as an adult. I took this as a great opportunity to retrain my brain. I was feeling childhood fear when my adult mind knew I wasn't in danger. Of course when you have a phobia your brain rationalizes the phobia. "Well, there aren't any recorded cases of ghosts or demons killing someone because they possess you and then you kill yourself." "They're waiting for you to let your guard down, then they'll strike." So, I would sit in a chair in my room in a vulnerable position in the dark at nighttime waiting for the ghost to come. In the beginning it was extremely difficult but I was at a point where I didn't care if I died anymore. Have something hit me over the back of my head and kill me because I can't live like a vegetable anymore. Sounds funny because there is 0% chance of danger but phobias aren't rational. As I would get more comfortable I would try to draw the fear out by cursing at God or telling the devil to take my soul or drawing satanic symbols or reaching my hand out waiting for something to shake it. Anything to draw the fear out. It took over 2 years to get over. Over time I could tell my brain was changing its response to fear. I would get excited at things that brought my nerves up. A new opportunity to make myself physically and mentally stronger. I knew it was working because in my dreams I started standing up for myself. I also realized there's nothing out to get me and I am not special. Ghosts weren't trying to contact me. It reinforced knowing the entire world can be wrong about something. There is nothing paranormal. Nothings watching me. If there is some almighty being it has no influence over my life. This was my change. Plenty of people still believe in God after they get over their pain.

Challenging the fear of what others think of me. Stopped caring about 'doing the right thing'. Didn't care about making the world fair and balanced. Sometimes I tip well and sometimes I don't. Sometimes I'll go out of my way to help someone and sometimes I don't feel like it. There is no consequence for not being nice. The world doesn't care. People care, that's about it. If I went and murdered 800 people the world wouldn't do anything. God isn't going to punish me. Nature isn't going to cast a rainstorm over my house. I won't get 'bad karma'. I won't go to hell when I die. Being overly nice is extra pressure and then guilt follows if you didn't do that nice thing for someone. It also angered me when other people wouldn't follow the same moral rules. I changed my mind about the rhetoric of how we should put so much attention on solving the issues in the world. The world is wrong. Helping myself is priority. Everyone would be in a much better place if everyone helped themself. It feels good to help others when it's true to how I feel but I'm not dismissing my emotions to do the right thing.

Working on my fear of bugs.

I had a terrible fear of large bodies of water. Most of my nightmares were tidal waves coming at me . I would go into the ocean water or deep side of an olympic pool. I would watch the clip in interstellar and imagine being there live and feel the fear while recognizing no harm is coming to me.

Getting over the fear of being punished after feeling good. Celebrate victories as Dr. Sarno said. I used to think something bad would surely follow and punish me after feeling good (possibly due to 8 years of catholic school). I embrace feeling good about something and take on the fear of consequence, then recognize nothing ever happens.

Breaking OCD habits. OCD is about feeling safe. I started breaking any OCD habits I was aware of.

There are many small things I'm not writing but you get the point. Everything that made me nervous I'd attack.

(3rd most important)Using my body despite having pain - I did this on and off over the years of the work. Knowing the body requires weight-bearing. Bones require weight-bearing , cartilage requires weight-bearing , joints require weight-bearing . These things get stronger the more you use them and running does not mess up your knees. Dr. Sarno was full throttle with this in his earlier books prescribing exercise or activity you love doing despite the pain. I tried this in the beginning pushing myself hard but as the days turned into weeks and weeks into months and months into years it becomes very difficult. Reaching a new activity milestone would boost my confidence because I learned I could put more stress on a body part than I thought possible. TMS is mainly about emotions but the crux of neuroscience is to retrain the brain that these activities are safe and beneficial for your body. As Dr. Sarno said, you must forget everything you were taught.

Therapy - I started therapy one year after journaling. Therapy is a good substitute for journaling because it allowed me to rant about the things in my life while having someone give me a different perspective on my issues. I needed someone to listen to me and understand what I was going through. No one would listen to me talk about my problems over and over unless I paid them. Using therapy to overcome the fear of being vulnerable. Using therapy as an outlet to get over the fear of someone judging me. I would purposely find something that I was embarrassed by or felt ashamed of and bring it up just for the sake of telling it to another person. It helped me not feel alone.

Journaling - I took journaling very serious, journaling around 2500 pages (SINGLE SPACED!) over the entirety of my journey. I journaled about everything I could possibly journal about. Unless you love journaling I'd say you should just journal your rage, sad stuff, and darkest thoughts(to get over the fear of putting them out into the world). It doesn't need to be an everyday thing although there is comfort knowing you're putting in work. In the beginning I would have emotional reactions like crying but I never felt a physical change in my pain until nearly the 2nd year of this work. I used a speech to text program because of my wrist pain. I think it's better because you can really let your emotion out when you are speaking or yelling. Neuroscientist Andrew Huberman has a video about how journaling traumatic events improves your immune system. According to Dr.Schubiner the immune system is controlled by the brain and according to neuroscience it is influenced by the brain and works together with the nervous system. The greater the emotional state during the writing the greater immune cell activation. There is science behind Journaling and if you're serious about getting better then it should be done for a decent amount of time.

Meditating/ visualizing - I meditated and did visualizations for almost the entirety of doing this work. Different types of visualizations : focusing on my breath and clearing my mind and just relaxing, imagining myself in a pool of healing water, imagining myself doing physical activity with no pain, going back to an event in my mind and saying/doing what I really wanted to do no matter how violent, going back to my childhood trying to feel what I felt.

I changed my job. I had possibly the worst job I've ever had to having the best job I will ever have.

I moved from a neighborhood where I did not feel safe to a very safe neighborhood.

Putting attention on how I am emotionally feeling all of the time or as much as I could. It only takes awareness to feel emotions.

I joined recovery international in the mid-late part of my journey when everything started to flareup. I was having feelings of unreality because of how bad my anxiety was getting. They teach a method called 'spotting' (affirmations). I would use affirmations like "there are no consequences." I used to think repetitive self talk was hippie nonsense but according to neuroscience brain cells store everything you hear, tell yourself, and see. If you tell yourself you are damaged and old then your brain will increase its defenses and give you symptoms to protect you. It believes what you are telling yourself. Your brain is always listening and watching.

Being kind to myself.

PRT (pain reprocessing therapy) from Alan Gordon's book "the way out".

Stopped physical treatment as Dr.Sarno said. At around 3 years when my whole body flared up I stopped stretching and strengthening. To this day I don't do one physical treatment. I don't stretch. I don't do rehab exercises. I don't take any medications. I take a vitamin D and B pill when I remember to. I'll go to the doctor if I have something I'm worried about but I take the doctor's words as an opinion. I have been misdiagnosed too many times. Dr.Sarno stated physical rehab is training your brain that you are damaged. He's right. Yes, it goes against everything you were taught as a child. Most of my journey I thought physical therapy combined with mind-body would work because maybe my pain was hybrid. Now I think it's actually detrimental. I needed to eliminate all possible conventional treatments so there was no doubt in my mind.

Many of these things don't need to be done. Looking back I recovered at the same rate whether I worked really hard or barely worked. My recovery felt more like a light switch situation. This is why I don't know exactly what cured me. We can only know by compiling data. People get better from all different approaches whether they are only meditating and journaling, only doing visualizations, or just using their body with messages of safety. The commonality between every success story is the knowledge of TMS/neuroplasticity and how the brain produces pain. Some people may take longer than others and some people may require more work as Dr.Sarno said. There isn't a scientist, doctor, or TMS coach who knows the exact regiment for everyone. I think as long as someone is persistent they will recover. Keep trying different methods. Don't worry about the philosophy. Much of the mind-body philosophy is confusing, not well defined, and meaningless imo. Don't think you don't have TMS just because it's taking you a long time. My recovery didn't even begin until 1 1/2 to 2 years in and still took over 3 more years after that to fully recover with different body parts blowing up along the way. You could require a revamp of your brain, or you're older and it's more difficult to rewire, or you have a brain susceptible to TMS, or you have a lot of childhood trauma, or you've had pain for a very long time and those neural pathways are set. Some people take a LONG TIME. At the 4th year I knew 100% I had TMS and it still took over another year. You're not doing it wrong. There's no such thing. There are no setbacks. It may be the most difficult challenge of your life but it'll be the greatest prize. You'll receive your entire life back and more. A limitless body. You wont fear getting older and having 'wear and tear'. You'll have the edge over 99.999% of the population. Don't give up just because it's taking a long time. It's everything you imagine it to be. All of my disappointments in life were overridden with this.

 

Thanks! Yea, it's a little too long for most people I think but I personally liked to know every detail when I was in pain.

 

Hi John. Thanks a lot for sharing this with us and putting so much effort into bringing this to paper. What a great story with such a happy ending. I really appreciated all the details.

 

@JohnDellatto Thank you for sharing! I also have Eustachian Tube and TMJ. I saw what helped you, but what was the most helpful and how did you not care about the symptoms? So happy for you!

 

John,
What a gift that you wrote this entire thing out for us. I appreciate the length and thoroughness of it. I can’t believe all the suffering you went through and how you retained the desire to fight your way to win your life back. What a strong person!

I’ve been fighting this round of TMS for four years, with one year with the forum— And my symptoms are body- wide and many that you describe so well. I love how you reinforce the fact that it takes as long as it takes— And when you finally get out of this, your life will be better than ever. I haven’t made much progress in a year, but I’m starting to see a little. I will be reading your story many many times! in fact, it might become my go to! Thank you so much from the bottom of my heart!

 

I don't know what was the most helpful for me because I did so many things and it took such a long time. I would guess the knowledge of TMS and pain neuroscience is the most important and working on fears. I'm emotionally different from when I started which may have been from the emotional work I did. And I definitely cared about my symptoms the entire time lol. I think everyone does otherwise they wouldn't be involved in any of this.

 

Glad you enjoyed the story so much.

Just continue forever because it's all worth it.

I wanted to make it a longer detailed story because when I first started and read peoples little stories I didn't believe them. I think changing your brain can take a really really long time. I do speculate if I had not doubted TMS maybe I would have recovered faster but even after the 4th year when I knew it still took over another year and the symptoms didn't reduce any faster. Life is actual life when you're recovered with the bonus of appreciating it.

 

Love this! ❤️thank you again!

 

I finally made an account just to reply to this success story (been lurking for a few months though)!
Thank you for sharing your story, and so thoroughly. Though our experiences and lives are very different, I’ve also been disabled by ‘Ehlers Danlos’ (among other diagnoses) and am starting to believe it’s just another stand-in for TMS. Maybe our connective tissues are a little different genetically, maybe a little more susceptible to tears and whatnot, but it doesn’t mean we have to live in constant pain and disability. I still have a long way to go, but hearing your story is so so helpful and inspiring. And thank you for being real about how long it took, how many stumbling blocks there were, how many doubts you had. This is a valuable story that will help many people.
Hope you’re enjoying your new found freedom and bodily health, but please do pop in here from time to time to share more about your journey and chat with some of us in the thick of it when we’re scared and doubting, if you can!

 

Thank you for answering me! Is the ETD and TMJ pain gone for you totally? I understand that you thinked about the pain while solving this, but what was is your advice when you give it to much attentions?

 

I'll always lurk around. I've never given advice on any forum because I hadn't recovered yet but I'm sure I'll give advice every now and then to people who have the same diagnoses as me. I don't think people are doing anything wrong with their methods besides worrying that they might be doing something wrong. Not everything is TMS but I think over 95% of chronic conditions are TMS. On every pain forum people report the same diagnoses - Herniated discs, spinal stenosis, spondylolisthesis, EDS, endometriosis, vulvodynia, migraines, DDD, over active bladder, food intolerances, long covid, any kind of independent joint pain, arthritis etc - and there are success stories for all of them. As long as someone is continuing to retrain their brain they'll eventually recover.

 

Yea, all of my symptoms are completely gone and I even had clicking in my jaw that's gone. I don't think it matters if you give it attention or not. PRT is focused on giving your pain attention but looking at it as benign and not dangerous and that helps people. Trying not to think about the pain also helps people. I think lowering the fear of pain is what's happening in both of those scenarios which is why it helps.

Thanks, it's alright.

 

Thank you! Yes, I have struggle still and my mind and body dont trust me