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

[JohnDellatto]

Well done John. What a journey you have been.
One part of the story resonate with me.
You said after reading dr.Sarno book you were able to be pain free for a few days.

That's so interesting because I had a drastic reduction in pain (not pain free but pretty darn close) after about 2 days of reading dr.Sarno boom as well, which lasted for 4-5 days.

The pain slowly came back and I am hoping to be able to replicate that again.
It's so interesting how our experiences are so similar in that sense.

Yeah, that sounds almost exactly like the same experience I had.

 

[Mando]

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.

That's an excellent account of your journey with, through and out of pain. It's exactly what I wanted to read, the 'warts and all' version. Personally, I have trouble relating to those who read a book about TMS and within a few weeks were completely healed. I'm sure it's symptomatic of me needing to do things the hard way, but that's been my life with pain so far. Anyway, great work, you deserve to feel invincible after going through everything you did!

 

[imalrightjack]

Wowsers. Only a few months into ‘allowing’ and letting go of fear, anxiety and constant body monitoring, following decades of build-up this. I have moments of doubt but mostly positive that I’m on the right path finally. No doctor, drug, supplement of specialist has helped - so it’s quite clearly not something ‘conventional’.

Thanks for sharing!

 

[Volcano1963]

Thank you @JohnDellatto for the length/depth of your story and all the resources you shared. I’m back at Day 1 because I want/need/? more neurophysiological science background and I’m realizing that reading success stories and interacting (from Day1) on this wiki with other TMS aware people will help me. I’m going to get into the resources you mentioned and offer two that helped me.

Molecules of Emotion by Candace Pert
Incognito by David Eagleman

Pert’s book is a Sarno ref that was especially helpful when I battled Silverbacks at a science conference the other day. (Silverback is a name for the dominant older male gorilla. Older male senior scientists sometimes don’t recognize their privileged status and the subtle and not so subtle ways they hurt and disempower women scientists.

thanks again!

 

[JohnDellatto]

Thank you @JohnDellatto for the length/depth of your story and all the resources you shared. I’m back at Day 1 because I want/need/? more neurophysiological science background and I’m realizing that reading success stories and interacting (from Day1) on this wiki with other TMS aware people will help me. I’m going to get into the resources you mentioned and offer two that helped me.

Molecules of Emotion by Candace Pert
Incognito by David Eagleman

Pert’s book is a Sarno ref that was especially helpful when I battled Silverbacks at a science conference the other day. (Silverback is a name for the dominant older male gorilla. Older male senior scientists sometimes don’t recognize their privileged status and the subtle and not so subtle ways they hurt and disempower women scientists.

thanks again!

Np! Yea, definitely keep sinking the material into your head so you get out of the old way of thinking about pain.

 

[lucky_li0n_d@wg]

Heyy I’m almost a year and a half into my experience with weird unexplainable pain and have had have had pain show up in almost every place you mentioned. Currently have pain in my pelvis/hips, low back, knees, elbows/wrists, and my ears. The ears are what I’m most curious about for you tho. When you say loud sounds hurt your ears did they literally hurt your ears or do you just mean it figuratively? I get actual zapping nerve pain in my ears in response to any very loud noise and certain specific noises that don’t even need to be loud to cause it. It was the second symptom I ever got and by far the one that causes the most difficulty in my life. The thing that seems to have kicked off all of my symptoms starting was me getting sick with a virus on New Year’s Day 2025 - I had extreme dizziness and head pressure for almost 2 months, then ear pain/sound sensitivity started, then came the pelvis/hips/low back pain and all the other symptoms.

I also get jaw pain sometimes too since all this started, and I’ve also had other symptoms that didn’t last that long like stomach pain, sore abs even when I hadn’t worked them out at all, and a headache that lasted a month. I’ve probably been to almost a dozen different doctors and specialists and gotten at least a dozen different tests done but none of them were able to find anything significant enough to give a definite answer what’s causing any of my symptoms OR give me anything that could help me more than the tiniest amount. The only thing I haven’t done is get an MRI anywhere because my ear issue makes it so that that would probably hurt a lot, maybe even for weeks or longer AFTER getting it done (that’s what’s happened in the past). I’ve been really trying to accept and believe in TMS but I’ve only been able to get to the point so far where I feel like “ok yes, it has to be real because how else could there be ALL these success stories fro the ppl doing the same things, but idk if I’m lucky enough that this could be MY solution”

but tell me more about your ear symptoms!! I rarely see much from ppl with ear symptoms here.

one of the other things that’s encouraging to me about your story was that your pain in one place DIDN’T always disappear before getting pain in another place. It was more like the pain symptoms spread to different areas at once which is kind of how mine is too. Ex: you got pain in your jaw AND arms all at the same time and a lot of your symptoms seemed to build on each other up and up and up vs always taking turns

 

[BloodMoon]

Heyy I’m almost a year and a half into my experience with weird unexplainable pain and have had have had pain show up in almost every place you mentioned. Currently have pain in my pelvis/hips, low back, knees, elbows/wrists, and my ears. The ears are what I’m most curious about for you tho. When you say loud sounds hurt your ears did they literally hurt your ears or do you just mean it figuratively? I get actual zapping nerve pain in my ears in response to any very loud noise and certain specific noises that don’t even need to be loud to cause it. It was the second symptom I ever got and by far the one that causes the most difficulty in my life. The thing that seems to have kicked off all of my symptoms starting was me getting sick with a virus on New Year’s Day 2025 - I had extreme dizziness and head pressure for almost 2 months, then ear pain/sound sensitivity started, then came the pelvis/hips/low back pain and all the other symptoms.

I also get jaw pain sometimes too since all this started, and I’ve also had other symptoms that didn’t last that long like stomach pain, sore abs even when I hadn’t worked them out at all, and a headache that lasted a month. I’ve probably been to almost a dozen different doctors and specialists and gotten at least a dozen different tests done but none of them were able to find anything significant enough to give a definite answer what’s causing any of my symptoms OR give me anything that could help me more than the tiniest amount. The only thing I haven’t done is get an MRI anywhere because my ear issue makes it so that that would probably hurt a lot, maybe even for weeks or longer AFTER getting it done (that’s what’s happened in the past). I’ve been really trying to accept and believe in TMS but I’ve only been able to get to the point so far where I feel like “ok yes, it has to be real because how else could there be ALL these success stories fro the ppl doing the same things, but idk if I’m lucky enough that this could be MY solution”

but tell me more about your ear symptoms!! I rarely see much from ppl with ear symptoms here.

one of the other things that’s encouraging to me about your story was that your pain in one place DIDN’T always disappear before getting pain in another place. It was more like the pain symptoms spread to different areas at once which is kind of how mine is too. Ex: you got pain in your jaw AND arms all at the same time and a lot of your symptoms seemed to build on each other up and up and up vs always taking turns

Oh goodness, I can hear how much you're still trying to line up your symptoms with someone else's. Even if @JohnDellatto (or someone else who had ear symptoms) said, "yes, my symptoms exactly match yours", that wouldn't truly convince you that yours are TMS—because with TMS, symptom-matching just keeps you chasing the next reassurance...

This is the kind of thing you've been doing since you joined the forum and it's something that so many TMSers do to a lesser or greater degree; it's par for the course and unfortunately it's a loop that keeps you stuck.

The real pattern that screams "mind/body/TMS" isn't the specific symptoms—it's that your particular symptoms keep shifting, spreading, defying explanation, and pulling your focus (to include sometimes the symptoms "building on each other up and up and up vs always taking turns" as you've also experienced). That's your nervous system under pressure, creating new symptoms faster than you can 'solve' them. The proof isn't in your ear pain matching someone else's—it's in how you're caught in that loop of chasing the next answer/comparison. That's part of the 'mechanism', and the proof isn't in how the body part you're focusing on is behaving. This is a brain thing, not a body thing.

Once I recognized that pattern instead of analyzing each symptom, I could start working on calming my system rather than feeding the loop. And that is what you need to do to lose your particular symptoms and eventually feel better.

 

[JanAtheCPA]

Pay attention to what @BloodMoon is saying to you, @lucky_li0n_d@wg!

I would additionally advise that you start turning this around by making a commitment, right here, right now, to stop describing your symptom details. Cold turkey, my dear! Treat it like an addiction that you need to quit, because it's just a time-consuming distraction that makes you feel like you're accomplishing something, when it's really not doing you any favors.

You only need one word to refer to the fact that you still have symptoms - and that's the word. Symptoms. Instead of lengthy details, you just say "my symptoms". Your posts will become much shorter, or maybe you'll eventually start talking about what's meaningful and necessary for recovery.

It won't be easy - that's why you have to realize it's an addiction.

 

[lucky_li0n_d@wg]

Pay attention to what @BloodMoon is saying to you, @lucky_li0n_d@wg!

I would additionally advise that you start turning this around by making a commitment, right here, right now, to stop describing your symptom details. Cold turkey, my dear! Treat it like an addiction that you need to quit, because it's just a time-consuming distraction that makes you feel like you're accomplishing something, when it's really not doing you any favors.

You only need one word to refer to the fact that you still have symptoms - and that's the word. Symptoms. Instead of lengthy details, you just say "my symptoms". Your posts will become much shorter, or maybe you'll eventually start talking about what's meaningful and necessary for recovery.

It won't be easy - that's why you have to realize it's an addiction.

I think I just got excited because I saw someone mention ear symptoms and I don’t usually see that here lol. Ngl I have a hunch the ear symptoms are the MOST likely to be TMS. I don’t think I realized at the time tho HOW much of a negative impact spending all that time on forums about it (like on reddit and tinnitustalk) had on me. A year ago I was spending more time reading those forums than I was on my homework, and I’m a college student. It was probably 5 or 6 hours a day, every day, for almost 5 months before I finally decided to quit. It kind of solidified the idea in my head that “you can’t get better unless you’re just lucky” even though I know now that that’s not true.

 

[JohnDellatto]

Heyy I’m almost a year and a half into my experience with weird unexplainable pain and have had have had pain show up in almost every place you mentioned. Currently have pain in my pelvis/hips, low back, knees, elbows/wrists, and my ears. The ears are what I’m most curious about for you tho. When you say loud sounds hurt your ears did they literally hurt your ears or do you just mean it figuratively? I get actual zapping nerve pain in my ears in response to any very loud noise and certain specific noises that don’t even need to be loud to cause it. It was the second symptom I ever got and by far the one that causes the most difficulty in my life. The thing that seems to have kicked off all of my symptoms starting was me getting sick with a virus on New Year’s Day 2025 - I had extreme dizziness and head pressure for almost 2 months, then ear pain/sound sensitivity started, then came the pelvis/hips/low back pain and all the other symptoms.

I also get jaw pain sometimes too since all this started, and I’ve also had other symptoms that didn’t last that long like stomach pain, sore abs even when I hadn’t worked them out at all, and a headache that lasted a month. I’ve probably been to almost a dozen different doctors and specialists and gotten at least a dozen different tests done but none of them were able to find anything significant enough to give a definite answer what’s causing any of my symptoms OR give me anything that could help me more than the tiniest amount. The only thing I haven’t done is get an MRI anywhere because my ear issue makes it so that that would probably hurt a lot, maybe even for weeks or longer AFTER getting it done (that’s what’s happened in the past). I’ve been really trying to accept and believe in TMS but I’ve only been able to get to the point so far where I feel like “ok yes, it has to be real because how else could there be ALL these success stories fro the ppl doing the same things, but idk if I’m lucky enough that this could be MY solution”

but tell me more about your ear symptoms!! I rarely see much from ppl with ear symptoms here.

one of the other things that’s encouraging to me about your story was that your pain in one place DIDN’T always disappear before getting pain in another place. It was more like the pain symptoms spread to different areas at once which is kind of how mine is too. Ex: you got pain in your jaw AND arms all at the same time and a lot of your symptoms seemed to build on each other up and up and up vs always taking turns

I had ear drum pain to be more specific which hurt from loud noises when it was at its worst. I never had the ears themselves have pain. I never had one body part completely become pain free before anything else. They all ended up lowering and going away at the same time I'd have more pain the body parts I stressed the most (If I used my wrists the most then I'd feel the wrists instead of feeling my elbows which I hardly ever stressed). It just has to do with how much my brain raised my stress ceiling before giving me pain. Any of your pains can be TMS and everyone is always going to worry whatever pain they get is "real" and not TMS.

 

[lucky_li0n_d@wg]

I had ear drum pain to be more specific which hurt from loud noises when it was at its worst. I never had the ears themselves have pain. I never had one body part completely become pain free before anything else. They all ended up lowering and going away at the same time I'd have more pain the body parts I stressed the most (If I used my wrists the most then I'd feel the wrists instead of feeling my elbows which I hardly ever stressed). It just has to do with how much my brain raised my stress ceiling before giving me pain. Any of your pains can be TMS and everyone is always going to worry whatever pain they get is "real" and not TMS.

oh I don’t have pain in my outer ears, it IS (or at least it FEELS like) in my eardrums. It feels like it comes from deep inside my inner ear. And it’s specifically in response to loud noises.

And yeah the other stuff you just said feels very familiar to me too, the pain patterns and all of that

 

[BloodMoon]

Any of your pains can be TMS and everyone is always going to worry whatever pain they get is "real" and not TMS.

…until you do some mind-body ‘work’ and, sooner or later, find that you’re not worrying about it anymore, @lucky_li0n_d@wg.

In saying “real” here, I appreciate that @JohnDellatto is referring to pain from a physical or structural cause (as distinct from TMS). But, following the theme of pain being real in another sense, I wanted to share something from Dr. Howard Schubiner that might help clarify the ‘mechanics’ of mind-body/TMS pain — because, as @JohnDellatto says, “any of your pains can be TMS”.

Dr. Schubiner puts it like this:

“It’s based on neuroscience — we’ve got tons of studies showing that emotional injury activates parts of the brain the same as a physical injury. So the pain that occurs from an emotional injury is real, because it’s the same pain as you would get from a physical injury. And most doctors have no idea that that’s true.” ~ Dr Howard Schubiner

(And by “injury,” he just means hurt — he’s not saying your brain is damaged.)

 

[JohnDellatto]

oh I don’t have pain in my outer ears, it IS (or at least it FEELS like) in my eardrums. It feels like it comes from deep inside my inner ear. And it’s specifically in response to loud noises.

And yeah the other stuff you just said feels very familiar to me too, the pain patterns and all of that

That's probably the same thing I had then. If i rubbed my cheek with my finger i could hear it and an ENT said it was cause of inflammation of the eustachian tubes.

 

[dhammabums]

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.

@JohnDellatto -

Hi John, i noticed you recovered from dry skin and the rash on your face looks like seborrheic dermatits, theres so few recovery stories of this on the net though i know it is TMS. I was wondering, you mentioned you did diets for a time. Did you stop the diets while you still had skin issues and just ate as normal? Did you ever link the skin to certain foods and then just introduced them again and carried on doing the mindbody work? Would be really useful to know about this bit specifically as people can create so much fear around food with regards to skin issues specifically. Many thanks Dhamma

 

[JohnDellatto]

@JohnDellatto -

Hi John, i noticed you recovered from dry skin and the rash on your face looks like seborrheic dermatits, theres so few recovery stories of this on the net though i know it is TMS. I was wondering, you mentioned you did diets for a time. Did you stop the diets while you still had skin issues and just ate as normal? Did you ever link the skin to certain foods and then just introduced them again and carried on doing the mindbody work? Would be really useful to know about this bit specifically as people can create so much fear around food with regards to skin issues specifically. Many thanks Dhamma

Hi Dhamma , no after I started getting significant progress in my symptoms I had figured my skin was the same thing as everything else and I stopped caring about what I ate long before this. I didn't eat a lot because I didn't want to gain weight but I ate whatever I wanted.

 

[dhammabums]

Hi Dhamma , no after I started getting significant progress in my symptoms I had figured my skin was the same thing as everything else and I stopped caring about what I ate long before this. I didn't eat a lot because I didn't want to gain weight but I ate whatever I wanted.

@JohnDellatto

Hi John thanks for this, and did you originally associate flares in skin with things you were eating? So you ate sugar, maybe some alcohol, snacks, dairy, gluten etc? Many thanks, its a big help. I'm pretty sure what you had was seborrheic dermatitis, did they ever tell you for definite thats what it was? Its flaky, dry, itchy, sometimes in hair, eyebrows, nasal folds and face and even groin area. Not very pleasant. Thanks again!

 

[JohnDellatto]

@JohnDellatto

Hi John thanks for this, and did you originally associate flares in skin with things you were eating? So you ate sugar, maybe some alcohol, snacks, dairy, gluten etc? Many thanks, its a big help. I'm pretty sure what you had was seborrheic dermatitis, did they ever tell you for definite thats what it was? Its flaky, dry, itchy, sometimes in hair, eyebrows, nasal folds and face and even groin area. Not very pleasant. Thanks again!

I didnt realize my skin was affected until the last year or something into my pain and by that time I had already tried different diets and I figured it was the same thing as everything else going on in my body. I didnt get skin flares. My skin was starting to get bad probably 3 years before the end cause I felt my arms in pain from rubbing my chair but I thought it was cause I worked from home and over years it gradually got worse and then gradually got better. I dont drink alcohol but I had sugar and dairy. I eat more sugar and dairy now. I had gone to a dermatologist to get rid of a bump on my face and she diagnosed me with something but I just said "ok" cause at that point I knew what it was and doctors always diagnosed me with stuff and were always wrong so I didn't care. She tried to give me some medicine for it and I said don't worry about it cause its getting better and she said "its going come back in the winter" which it never does. The thing is I didn't have my eyebrows and nasal folds or groin as affected as my face and since my hearing was affected by inflammation Im pretty sure it was just systemic inflammation.

 

[dhammabums]

I didnt realize my skin was affected until the last year or something into my pain and by that time I had already tried different diets and I figured it was the same thing as everything else going on in my body. I didnt get skin flares. My skin was starting to get bad probably 3 years before the end cause I felt my arms in pain from rubbing my chair but I thought it was cause I worked from home and over years it gradually got worse and then gradually got better. I dont drink alcohol but I had sugar and dairy. I eat more sugar and dairy now. I had gone to a dermatologist to get rid of a bump on my face and she diagnosed me with something but I just said "ok" cause at that point I knew what it was and doctors always diagnosed me with stuff and were always wrong so I didn't care. She tried to give me some medicine for it and I said don't worry about it cause its getting better and she said "its going come back in the winter" which it never does. The thing is I didn't have my eyebrows and nasal folds or groin as affected as my face and since my hearing was affected by inflammation Im pretty sure it was just systemic inflammation.

@JohnDellatto So to clarify, you didnt have eyebrows, nasal folds or groin affected at all? Was it oily/flaky or itchy on the face where it was? It looks very red and inflamed in that picture, exactly what seb derm looks like. Was quite helpful to find your story tbh as i hadnt seen many people with it talking on TMS forums. But you ate everything and werent taking anti-inflammatories and the inflammation went away just with TMS work, even while eating sugar and everything? That's ace. They didnt say it was rosacea or dermatitis specifically?

 

[JanAtheCPA]

@dhammabums, obsessing about irrelevant minor details is a distracting technique by your TMS brain to keep you STUCK with symptoms. John is being too nice, when the fact is - and I will use this word again - the physical details are completely IRRELEVANT. He has tried to say this to you several times, but you're not getting the message.

Have you read a book by Dr Sarno? If not, please do so before continuing to engage here, because it appears that you are not understanding how we approach and discuss chronic conditions on this forum. Those of us who recover do so by completely rejecting the medical model after it's obvious that it has nothing to offer.

 

[dhammabums]

@dhammabums, obsessing about irrelevant minor details is a distracting technique by your TMS brain to keep you STUCK with symptoms. John is being too nice, when the fact is - and I will use this word again - the physical details are completely IRRELEVANT. He has tried to say this to you several times, but you're not getting the message.

Have you read a book by Dr Sarno? If not, please do so before continuing to engage here, because it appears that you are not understanding how we approach and discuss chronic conditions on this forum. Those of us who recover do so by completely rejecting the medical model after it's obvious that it has nothing to offer.

Thanks but I would let John answer for himself please, ive searched long and hard for this information and his information is more important to me than your opinion .

ANd yes i have read it all and recovered from everything except seb derm. So please dont fall foul to the same attitude as those on reddit. It becomes a form of fascism like any other.