Fibromyalgia & H Pylori

[mikeinlondon]

I'm curious about something. Reading through Reddit forums on Fibromylagia, people attend appointments with rheumatologists for their pain. If tests show that no physical abnormality found presumably they are told it's in their head/psychological in nature. Indeed some will disagree with this diagnosis but others will accept the diagnosis. There are numerous examples of people experiencing Fibromylagia on Reddit forums who attribute their pains to abuse, trauma etc. Out of those people, why are they continuing to suffer in pain if they are aware of the mind-body connection i.e. they are aware they do not have a serious illness? Apart from Crohn's Disease I do not have any serious disease. I also know that the severe pain I'm experiencing is the brain's over reaction to simple daily tasks like sitting. I am also aware of my traumatic past and have mentally processed the memories i.e. I know the cause was not my fault for I was just a child doing the best that I can to survive. However, even with that in mind, the brain continues on its pathways of pain. These pathways do not serve me in any way. I have expressed the anger of my past trauma in multiple ways i.e. either directly to the person or in unsent letters. The interesting aspect is that I have experienced all sorts of physical pains in the past but they never became chronic i.e. they came and went. Ten years ago I went through an awful period in my life. My best friend left the country (that crushed my soul), I started a new role with an emotionally abusive boss and I had glandular fever. All this happened in the space of a year and I was depressed from life. The glandular fever brought bad muscular aches for weeks but it didn't affect me i.e. I went to work and lived my life as if nothing happened. This time round I developed severe insomnia, severe breathlessness and severe fibro type pains (the latter following antibiotics) and I suspected all my symptoms related to a (severe) H Pylori infection as every time I'd eat I would get a panic attack. I do wonder why I couldn't cope this time? I developed a severe seizure and anxiety at the start of all these symptoms and I do wonder if the severe insomnia caused this. It's now about nine months since I began this journey. I guess my question to anyone on this forum is whether your symptoms began from a period of severe insomnia? If so, what was your experience?

 

[BloodMoon]

There are numerous examples of people experiencing Fibromylagia on Reddit forums who attribute their pains to abuse, trauma etc. Out of those people, why are they continuing to suffer in pain if they are aware of the mind-body connection i.e. they are aware they do not have a serious illness?

I believe Dr Sarno said that fibromyalgia is one of the severest manifestation of TMS. He also said that some TMSers will have suffered such trauma and/or have such deeply buried rage etc., that they need psychological therapy to recover. Putting these two aspects together, I would think that a lot of fibromyalgia sufferers more often than not need more than to read Sarno's books and do self-help TMS work. Like you, I'm in the UK. Years ago, I was diagnosed by a rheumatologist and a pain specialist as having fibromyalgia and I was never offered adequate psychological therapy on the NHS (I had a once a week session of CBT for 6 weeks, which did nothing to improve my situation, and I'm guessing that that wouldn't be available to those diagnosed with fibromyalgia in the current climate of the NHS being so cash strapped). My experience seems to indicate that if you need adequate psychological therapy you have to pay for it yourself and I surmise that most people with fibromyalgia wouldn't be able to afford it (bearing in mind that they often have such severe symptoms that they can't carry on working; which is in fact what happened to me, I was bed ridden with it).

 

[Baseball65]

Out of those people, why are they continuing to suffer in pain if they are aware of the mind-body connection i.e. they are aware they do not have a serious illness?

Because they are operating in the realm of PERCEIVED emotions and Memory. That is why I do not subscribe to anybody But Sarno.
Yes, I had a pretty tumultuous life growing up. But I knew that... So why did I get TMS anyways?

It's not just about Childhood Trauma, but Anger, Rage and Shame generated and suppressed...whatever I think I know about me? That is just a fraction of what's going on down there. It also includes all of the reconditioning, knowledge that there is nothing wrong, and yes, SOME of my modern day issues....but The stuff I am aware of? That is usually Not the problem. It's the stuff I have no access to and can only postulate.

H Pylori infection as every time I'd eat I would get a panic attack.

H. Pylori doesn't do anymore to your stomach than herniated discs do to your back...it's just there and almost everybody has it.

 

[mikeinlondon]

I believe Dr Sarno said that fibromyalgia is one of the severest manifestation of TMS. He also said that some TMSers will have suffered such trauma and/or have such deeply buried rage etc., that they need psychological therapy to recover. Putting these two aspects together, I would think that a lot of fibromyalgia sufferers more often than not need more than to read Sarno's books and do self-help TMS work. Like you, I'm in the UK. Years ago, I was diagnosed by a rheumatologist and a pain specialist as having fibromyalgia and I was never offered adequate psychological therapy on the NHS (I had a once a week session of CBT for 6 weeks, which did nothing to improve my situation, and I'm guessing that that wouldn't be available to those diagnosed with fibromyalgia in the current climate of the NHS being so cash strapped). My experience seems to indicate that if you need adequate psychological therapy you have to pay for it yourself and I surmise that most people with fibromyalgia wouldn't be able to afford it (bearing in mind that they often have such severe symptoms that they can't carry on working; which is in fact what happened to me, I was bed ridden with it).

That’s really interesting, are you saying you were bedridden due to fibro symptoms? How severe were your symptoms and were you able to overcome it? I’m looking to find some EMDR therapy. I also heard hypnotherapy for PTSD can help. Any advice you can provide me would be greatly appreciated. Thank you.

 

[mikeinlondon]

Because they are operating in the realm of PERCEIVED emotions and Memory. That is why I do not subscribe to anybody But Sarno.
Yes, I had a pretty tumultuous life growing up. But I knew that... So why did I get TMS anyways?

It's not just about Childhood Trauma, but Anger, Rage and Shame generated and suppressed...whatever I think I know about me? That is just a fraction of what's going on down there. It also includes all of the reconditioning, knowledge that there is nothing wrong, and yes, SOME of my modern day issues....but The stuff I am aware of? That is usually Not the problem. It's the stuff I have no access to and can only postulate.

H. Pylori doesn't do anymore to your stomach than herniated discs do to your back...it's just there and almost everybody has it.

So what are you saying? Are you saying the, perhaps, hypnotherapy for PTSD would help? If all the negative emotions are below the surface of perceptual reality then I see no solution other than hypnosis.

In the main I agree with what you say about H Pylori. However I have read cases, actually forums full of people, who are experiencing mental health symptoms following severe H Pylori infection. There is evidence to suggest a strong correlation between H Pylori and anxiety. My GP in the UK actually acknowledged that a bad H Pylori infection could bring existing anxieties out to the surface. Furthermore, the antibiotics given for H Pylori are so strong that it can change one’s gut flora. Given the mind body connection it is beyond reasonable doubt that a change in one’s microbiome could, theoretically, impact their mental health. One doctor mentioned (on an online forum) that he’s seen cases of new mental illnesses following H Pylori antibiotic treatment.

 

[Joulegirl]

I was diagnosed with fibro toward the end of my journey with conventional medicine. I told the doctor my symptoms and she said it sounded like fibro and now that is on my chart. I was referred to a specialist but thankfully I didn't go. Fibro is TMS and I can't believe that there are people out there suffering. However, if someone does post about the Mind Body Syndrome on reddit, they usually get slammed over it. I even looked for a Mind Body Syndrome reddit or a TMS reddit and there was nothing. Isn't that interesting. It would have been nice to find this a lot sooner!
I suffer from insomnia too. It's TMS. Day 27 on the SEP talks about insomnia and its an interesting read on it. It's a conventional doctor who healed his insomnia using the TMS methods.
I also was diagnosed with H. Pylori and took a round of strong antibiotics. I had to be on a PPI as well for several months. Then my hair started to fall out and I learned that the PPI blocks absorption of vitamins and I quit it cold turkey! After going to a functional doctor I was told we all have H. Pylori. So who knows if I needed that antibiotic or not. As you continue with this TMS journey you will learn so much! I look at illnesses in my childhood and I had TMS back then.

 

[mikeinlondon]

I was diagnosed with fibro toward the end of my journey with conventional medicine. I told the doctor my symptoms and she said it sounded like fibro and now that is on my chart. I was referred to a specialist but thankfully I didn't go. Fibro is TMS and I can't believe that there are people out there suffering. However, if someone does post about the Mind Body Syndrome on reddit, they usually get slammed over it. I even looked for a Mind Body Syndrome reddit or a TMS reddit and there was nothing. Isn't that interesting. It would have been nice to find this a lot sooner!
I suffer from insomnia too. It's TMS. Day 27 on the SEP talks about insomnia and its an interesting read on it. It's a conventional doctor who healed his insomnia using the TMS methods.
I also was diagnosed with H. Pylori and took a round of strong antibiotics. I had to be on a PPI as well for several months. Then my hair started to fall out and I learned that the PPI blocks absorption of vitamins and I quit it cold turkey! After going to a functional doctor I was told we all have H. Pylori. So who knows if I needed that antibiotic or not. As you continue with this TMS journey you will learn so much! I look at illnesses in my childhood and I had TMS back then.

I’m really relating to what you’ve said! What was your fibro and insomnia symptoms like and have you noticed any changes since beginning your TMS journey? Have you noticed any changes in your anxiety prior to the onset of fibro?

 

[Diana-M]

Mike,
Stay off of Reddit! It’s just as bad as googling symptoms. You have to keep your head totally in the mind body realm or else you’re telling your brain that you have doubt. TMS feeds on doubt! Fibro is severe TMS. It’s TMS all over the body. I haven’t been diagnosed because I won’t go to a doctor about it— But I could easily self diagnose myself with fibromyalgia. Can we get better? Yes!!!! How do we know this? Because our friends here on the forum and in other places where people talk solely about mind-body healing—they share their success stories.

I’ve spent the last four years in quest of the one big thing that would get me out of this TMS. From 2021-2024 I had the most intense psychotherapy I’ve ever had in my life. It was called internal family systems. I was an absolute basket case from it. It was tearing me up. We went so deep. But I stuck with it because I thought it would get me out of my TMS. I think it did give me much more insight into my past. (I had already had a lot of therapy before this.) But it actually made all my symptoms worse. I even got new symptoms while I was doing it.

Now, after a year on this forum and studying really hard about all things TMS— I would say I believe doing things in the face of your fear is the biggest healer, Next is journaling.

The free structured educational program on this wiki seems to shake people up quite a bit —some people get all the way better doing it. I think it’s probably one of the best things you could do if you’re looking for a program of any kind. (true confession: It must be good because I’ve started it twice and I haven’t been able to finish it! What is my brain hiding from?!)

Hang in there, brother! I know you’re suffering and I’m sorry about it. Stick with the true program. Read Sarno every day. And add in some Claire Weekes for the anxiety and insomnia.

 

[Baseball65]

So what are you saying? Are you saying the, perhaps, hypnotherapy for PTSD would help? If all the negative emotions are below the surface of perceptual reality then I see no solution other than hypnosis.

Read Sarno. He explains it better than I could. You don't need to discover them to become well.

However I have read cases, actually forums full of people, who are experiencing mental health symptoms following severe H Pylori infection.

My son worked on a Huge H. pylori study at Vanderbilt. Virtually Everybody has it , meaning it is just 'there'....Your Body can change anything for good or bad. That's called a NOCEBO. Your mind makes a command decision to create a distraction, using whatever you believe in....the scarier the better.
There are also forums full of people complaining about their discs, but that doesn't make it real. In Fact, Healthboards used to automatically delete any post about Sarno. it is outside their experience and they get MAD

Sarno is a whole different way of looking at it. It's not about figuring out what's the deal....it is a process.
Refute the diagnosis, Re-educate your Mind, Return to activity. The three R's.
If you still believe the 'Medieval Medical models' you're still stuck on the first R. You can do all three, but actively pursuing a structural solution will preclude a Sarno healing. It's like 'sort of' being pregnant. You either are or aren't.
Some newer practitioners have been watering down Sarno and that might explain the people not getting results.

 

[Joulegirl]

@mikeinlondon My fibro was the basic joint pain. I have a family member that has it so that is why the dr was so quick to diagnose me and move on to her next patient. Since learning about TMS when I get any sensations of fibro I don't get scared. Other symptoms scare me but fibro doesn't. As for insomnia I usually can't fall asleep right away or I wake up at 3 with my mind spinning. It's TMS at it's finest and it used to freak me out. I'm currently on Day 29 of the SEP and I would say that both fibro and insomnia don't bug me at all anymore. The symptoms subside pretty fast. It's other symptoms that I'm working on to not have anxiety over and to not being afraid. It's a process and I know it will take some time for me.

If you haven't started the SEP I do recommend it. Take it day by day and you will learn a lot about your self with the journaling questions.

@Diana-M YES! As you go along with the SEP the questions hit a lot harder and it digs much deeper. My brain loves to come up with some good excuses for not doing my journaling!

 

[Rusty Red]

I feel like H. Pylori became the thing they jumped on because they wanted a physical explanation for ulcers and expanded the "impact" from there.

 

[BloodMoon]

That’s really interesting, are you saying you were bedridden due to fibro symptoms? How severe were your symptoms and were you able to overcome it?

Yes, I was bedridden with fibromyalgia. Fibromyalgia Syndrome is defined by the World Health Organisation as "a chronic condition characterised by widespread musculoskeletal pain, often accompanied by fatigue, sleep disturbances, and cognitive dysfunction" and I had the whole shebang (to include overwhelming fatigue) plus, for good measure, profound muscle stiffness and severe muscle spasms. The worst of the latter (muscle spasms) often torqued and twisted my pelvis out of line, then set like concrete, causing me excruciating pain; I couldn't walk or weight-bear for many months at a time... on one occasion 3 months, on another 4 months and on another 7 months, and in between times I was housebound due to my symptoms. However, if you consider that Fibromyalgia Syndrome is actually TMS then all of these symptoms are explicable because the TMSing brain can cause all manner of symptoms, to include the symptoms of complex regional pain syndrome, which include tissue inflammation and swelling (at least two of the members of this forum were diagnosed with the latter and recovered from it using mind/body techniques and their success stories gave me hope).

I couldn't afford psychotherapy, so I have struggled along on my own (without a therapist's help) doing mind/body/TMS work. I'm not fully recovered, but I'm a hell of lot better than I was. I'm no longer permanently housebound. As @Diana-M has recommended, I too suggest doing the free SEP on this Wiki https://www.tmswiki.org/ppd/Structured_Educational_Program (Structured Educational Program).

 

[Baseball65]

I feel like H. Pylori became the thing they jumped on because they wanted a physical explanation for ulcers and expanded the "impact" from there.

I've written on this before. I went to the Vanderbilt lab on 'Parents Day'. I got to look at an H. Pylori Cell nucleus through a PET Microscope.
The Professor in Charge was explaining all the great work they were doing. In Fact he was the one who gave me the statistics. In the western world 50% of the population has it in Measurable amounts. In the 3rd world 90% of the population has it.
I asked him why they were dumping so much resource into it "Well, we think it is linked with Ulcers and blah, blah, blah" He then went on to let us know that He Himself had taken long courses of anti-biotics to banish it from his own body.
I asked "Were you having trouble? Symptoms?"
He answered "No"
"Then why did you want to get rid of it?"

No answer.

"a chronic condition characterised by widespread musculoskeletal pain, often accompanied by fatigue, sleep disturbances, and cognitive dysfunction"

I probably would have gotten that diagnosis if I has stayed around the Pain Industry a little longer. it's just a collection of symptoms. My collection included all of those in different measures. The only one Bugging me was pain...I have gotten used to the rest.
Sarno's explanation about people with Childhood rage reservoirs made a lot more sense then any of the pathologies I was given. The older i got and the more people I talked to honestly, the more 'not normal' my upbringing became.

I actually had a funny breakthrough yesterday. My hand with the massive swelling bugs on and off, but since it bugs the most when I am not using it, I have been ignoring it. Right before going to Bed last night I read this forum and realized "Hey..it hasn't even chirped for a couple days!" (it immediately did when I had that thought)
I had worked all day : hard days work of detail, using my hands re-glazing vintage windows. I came home and played guitar the whole evening. Went out and dragged a monster pile of Groceries home....

But I did not work for my Son. First Job all year that I was alone on.

Hmmmm. ?

 

[Diana-M]

But I did not work for my Son. First Job all year that I was alone on.

Hmmmm. ?

BIG hmmmmmmm!

 

[JanAtheCPA]

I guess my question to anyone on this forum is whether your symptoms began from a period of severe insomnia?

Insomnia is TMS, so this question is irrelevant and it's a waste of your time and energy to be asking it. You are still overthinking and still trying to find the one magical answer.

What was your fibro and insomnia symptoms like and have you noticed any changes since beginning your TMS journey? Have you noticed any changes in your anxiety prior to the onset of fibro?

Constantly looking for reassurance in other people's experiences is a sure sign that your TMS brain has you spinning your wheels and getting nowhere - which is exactly where your TMS brain wants you to be.

forums full of people, who are experiencing mental health symptoms following severe H Pylori infection. There is evidence to suggest a strong correlation between H Pylori and anxiety.

This is chicken vs egg. Your second sentence should come first, because it is very certainly true. In your first sentence you are claiming causation, when all you have is association.

I've had a lifelong fascination with human behavior, and it's still shocking to me how many people with obvious anxiety are in complete denial. If you were to interview these redditors about their lives and other physical symptoms before their so-called h.Pylori infection, I guarantee you that they will all have previously suffered from multiple symptoms of what we all recognize as TMS, and that it will be quickly obvious that they all have what I call EIU Anxiety - which stands for excessive, irrational, and unnecessary.

EIU anxiety weakens the immune system. People with weakened immune systems are more likely to succumb to the constant barrage of infectious and harmful agents that always surround us. That's all there is to it.

Take the advice of everone responding to you. You want a quick cure. There isn't one. You have to do the work, but the really hard part is that you have to do the work with true emotional vulnerability. Your fearful brain will fight back against that with everything it's got. So far, it's been very successful.

 

[mikeinlondon]

Insomnia is TMS, so this question is irrelevant and it's a waste of your time and energy to be asking it. You are still overthinking and still trying to find the one magical answer.

Constantly looking for reassurance in other people's experiences is a sure sign that your TMS brain has you spinning your wheels and getting nowhere - which is exactly where your TMS brain wants you to be.

This is chicken vs egg. Your second sentence should come first, because it is very certainly true. In your first sentence you are claiming causation, when all you have is association.

I've had a lifelong fascination with human behavior, and it's still shocking to me how many people with obvious anxiety are in complete denial. If you were to interview these redditors about their lives and other physical symptoms before their so-called h.Pylori infection, I guarantee you that they will all have previously suffered from multiple symptoms of what we all recognize as TMS, and that it will be quickly obvious that they all have what I call EIU Anxiety - which stands for excessive, irrational, and unnecessary.

EIU anxiety weakens the immune system. People with weakened immune systems are more likely to succumb to the constant barrage of infectious and harmful agents that always surround us. That's all there is to it.

Take the advice of everone responding to you. You want a quick cure. There isn't one. You have to do the work, but the really hard part is that you have to do the work with true emotional vulnerability. Your fearful brain will fight back against that with everything it's got. So far, it's been very successful.

I agree with what you say in principle but but I do not necessarily agree with your views on H Pylori. I don't think you can compare spinal discs to H Pylori where, in the former case, people can have pain attributable to TMS and not due to any structural defect that would necessarily require pain signals. Regarding the latter it's a bit more complex due to the nature of the gut environment. Our guts are teaming with trillions of bacteria and there's a communication highway between the gut than the brain (brain-gut axis). Essentially the microbes in the gut can communicate to the brain; I assume this could be via chemical means or via neurons. H Pylori, normally resides in the stomach, and that organ has a lot of nerve fibres that relay information to the brain. It does not seem far out to me that a SEVERE overgrowth of H Pylori could send alarm signals to the brain via the brain-gut axis sending putting it into fight-flight mode (the same case can be made for SIBO). In my specific case I do have EIU (Health) Anxiety. Historically, I've had it severely with lots of negative and ruminating thoughts that consumed my mind but that never significantly impacted my sleep (the anxiety was never somatic). These anxiety episodes would be limited to mind and not affect my body. However, something changed last summer within me that made no sense. I experienced a different type of anxiety, not one I ever experienced before, very physical in nature without the ruminating/doom thoughts. The body felt very irritable, anxious and in a state of panic i.e. somaticized EIU anxiety. It was so severe when eating food i.e. as soon as food entered by stomach I would be in a state of panic which re-in forces the concept that the anxiety is triggered from the stomach to the brain. To this day I am unable to sit without feeling shaken even though I'm not ruminating EIU thoughts. I am open to the work of TMS; I have read a few books on the topic, I write journals, write unsent letters, listen to somatic meditations, opened up to my perpetrators about the abuse they gave me, I'm in touch with a TMS professional, a psychologist for EMDR for PTSD. I believe all my existing symptoms today are TMS - 100% - and there's no doubt about that. My point it that I do not think the "Big Bang" event i.e. the event that triggered TMS was simply the brain woke up one morning in a fright and started ringing the alarm bells - no way! I believe there was a threat in the gut axis from a severe H Pylori infection, the H Pylori were in high numbers sending messages of doom to the brain via the gut-brain axis, my highly sensitive brain got frightened and got itself into a panic (this got worse once I started googling symptoms), the brain then went into hyper anxiety mode (insomnia, palpitations, breathlessness). Once the infection was eradicated the brain was left in a state of shock (PTSD) from the invasion and now I'm suffering from TMS (the chronic condition) from the traumatic acute incident (severe H Pylori infection). I'm not expecting a quick cure and I'm open to emotional vulnerability. My symptoms do not scare me as I know they are just virtual i.e. it's just my brain scared and frightened (it feels like a little child that's is crying out for its mummy). So, in conclusion, I agree with all that you say but I do not agree with your assertion about H Pylori. My theory is I took a very high dose of vitamin K2 (I now understand that this vitamin the fuel source for H Pylori) which allowed the H Pylori microbes to grow out of control and traumatise the brain. I have been in fight/flight mode ever since and my brain is now in a state of panic and crying out with TMS symptoms. On another note I do not have a weakened immune system and H Pylori has a way to evade the immune system by changing its shape and going into a dormant phase within the stomach lining. It's a very sneaky and nasty microbe. Indeed, correlation and association is not causation but I have enough evidence from my own experience and other people in my circle of friends who have suffered severe mental symptoms from a H Pylori infection. The key difference between them and me was for me the symptoms became chronic i.e. they suffered the acute symptoms and I suffered the acute symptoms plus the chronic (TMS). I know I need to find a way to calm my TMS brain down so that it feels safe i.e. initial threat is gone and it can now relax. We may not agree on the impact of H Pylori on the body but at least we both can agree that my ongoing and chronic symptoms are TMS in nature. This is for certain.