Writing thesis on Fibro and Touch, anyone down to be interviewed?

[sweetkamie20]

My experience with issues with touch is limited to tender points. Funny story: when I got diagnosed this year and learned about the tender points I had to laugh. For 8 years I thought my husband was deriving some secret, mischievous pleasure from making me wince by massaging really hard on certain areas. I was resigned to the fact that he was doing it just to get a reaction out of me. All those years he pleaded his innocence but I was convinced he did it on purpose to make me squirm. Turns out he was innocent. Poor guy. In my defense I never returned the favor

 

[ViankaL]

I was diagnosed with fibromyalgia 4 years ago, been in pain for over 11 years, and probably for the last 2 to 3 years I have avoided being hugged because my body hurts too much to hug anyone! I hurt everywhere all the time! And I don't want to take meds because I know it's toxic for my liver! Just recently heard about a ten year medical research study where the main researcher found the root cause of fibromyalgia is chronic low grade systemic inflammation and if we can find a way to put out the fire of inflammation we can eradicate the symptoms of fibromyalgia, wouldn't that be nice?

 

[JayCS]

Hi Vianka, and a warm welcome!
Thanks for coming in to this topic with your allodynia experience!

Just recently heard about a ten year medical research study where the main researcher found the root cause of fibromyalgia is chronic low grade systemic inflammation

This sounds like the article @Jemima found on verywellhealth about neuroinflammation. Interesting article: Autoimmunity and Neuroinflammation in Fibromyalgia
I've never heard of and can't find any ten year medical research studies on fibro, so I'd be interested what the name of the study / article is (you may have seen in the forum rules that external links aren't allowed here).

I'm wondering though how the study can have been ten years long - no one does that and I don't see the sense of it. Praps the main researcher had done ten years of research altogether. Also, it would never be possible to prove a root cause just using one study - that would have to be peer-reviewed and then replicated by many other studies etc. And as yet some researchers do in their exuberance about a new finding sometimes claim things like "it is autoimmune" (Goebel 2021) outside of their studies, but they don't and can't really mean it like that. At the moment there are about 4-5 serious threads of research in "causes" and about 15 sets of biomarkers (we have them, but it's probably not the cause). Actually all "causes" in my opinion may also turn out to be biomarkers, since "association is not causation": just cos we have something doesn't mean that's the reason why we have it. In this case just because we have chronic low grade systemic inflammation that doesn't mean it's the cause. And even if the causes will turn about to be causes, I suggest there might never be just one root cause.

Outsiders like Morley Robbins with his Root Cause Protocol actually claim they know the root cause of illnesses such as "different autoimmune conditions, thyroid issues, adrenal issues, chronic fatigue, fibromyalgia, and many other health issues" to be mainly "cellular dysregulation" due to ... wait for it .... "Magnesium, Copper, and Iron" - and I don't necessarily think he's got it all wrong, some of it does make some sense. (He's not a doc or researcher, but medically trained, done lots of 'research', his wife is a doc.)
It goes to show how someone believing they've found the "Theory of Everything" for fibromyalgia can be topped by someone else believing they've found the "Theory of Everything" for all chronic conditions... even nicer if it can be simply brought down to 3 the metal elements.... neat .

This from Sweden, 2017, is the only one about "systemic inflammation" I found on pubmed. It may come close, but it's not a long-term study "Evidence of both systemic inflammation and neuroinflammation in fibromyalgia patients, as assessed by a multiplex protein panel applied to the cerebrospinal fluid and to plasma."

Logical of course thinking about it that if someone had really found the root cause, we'd immediately know about it, like we know about any major findings inside of a few months.

 

[ViankaL]

Hi JayCS,

I don't know what you can or cannot say or share on this thread, but I have been deep into studying fibromyalgia and its causes from all different research sources including pubmed, have spoken to several so called fibromyalgia experts, have literally traveled to meet them in person and I found out about the 10 year study from a doctor who had suffered from severe fibromyalgia symptoms for I think over 7 years and was able to heal her body from every single fibromyalgia symptom within 45 days by following the recommendations of the main researcher of that 10 year study whose specialty was immunology, and in the 10 years he did the study all his blood testing showed that every fibromyalgia patient he was working with had chronic low grade systemic inflammation caused from the inability of the body to expel and remove accumulated fat soluble toxins that the body has a hard time processing and eliminating. The biggest source of fat soluble toxins are the man made ingredients in our packaged and processed foods. At some point the immune system becomes overwhelmed and weakened by the high levels of these fat soluble toxins and is unable to put out the fires of inflammation so the next thing that happens is neuroinflammation which starts in the brain microglia cells which get activated and produce massive amounts of inflammatory molecules which affects the brain centers that produce the main symptoms of fibromyalgia including sending out abnormal pain messages that causes widespread pain, chronic fatigue, cognitive issues, etc. etc. I am still trying to make an appointment with the doctor who healed herself from fibromyalgia. I hope she can help me too! As far as the 10 year research study is concerned, my understanding is the main researcher tried to publish it and got rejected by 19 different medical journals. He couldn't figure out why they wouldn't publish his work and later through asking different people familiar with the process of being published he found out the reason they wouldn't publish his work was because medical journals are funded by the pharmaceutical industry and if the solution to the problem they are researching is not a pharmaceutical drug, they will not publish your research paper! And in this case the researcher had tried several different drugs but none had been able to improve the life quality of the fibromyalgia patients he was working with, so he had decided the best way to help those patients was to improve and strengthen immune function by supporting the body with detoxification of the fat soluble toxins that had caused the chronic systemic inflammation leading ultimately to the symptoms of fibromyalgia! The doctor I am trying to make an appointment with did 2 videos and that is how I know all this information, I have listened to the videos several times and have taken in depth notes, I just hope I am explaining it so you can understand it well! I am so looking forward to living a pain-free, fatigue-free, clear minded, good-night-sleep, fibromyalgia-symptom-free, life and this is the first time I actually see a light of hope to get my life and health back! Because I believe there is no way our creator God would want anyone to be suffering the way I have for the past 11 years! As I do every day I pray to God for answers and I live my life knowing there is an answer to all health challenges and I will never give up until I find it, because I know neither I or anyone deserves to live life with so much pain and suffering!

 

[JayCS]

Hi JayCS, I don't know what you can or cannot say or share on this thread,

Hi Vianka, these are all things you can say on a thread like this, but by saying it you are of course putting it up to debate...

but I have been deep into studying fibromyalgia and its causes from all different research sources including pubmed, have spoken to several so called fibromyalgia experts, have literally traveled to meet them in person and

Without more details this doesn't yet mean or qualify anything...

I found out about the 10 year study from a doctor who had suffered from severe fibromyalgia symptoms for I think over 7 years and was able to heal her body from every single fibromyalgia symptom within 45 days by following the recommendations of the main researcher of that 10 year study whose specialty was immunology, and in the 10 years

Ah, you're teasing us by keeping the names a big secret?
And yet another miracle cure, the miracle cure of all miracle cures and we all haven't heard of it yet?
How mean people can be.....

he did the study all his blood testing showed that every fibromyalgia patient he was working with had chronic low grade systemic inflammation caused from the inability of the body to expel and remove accumulated fat soluble toxins that the body has a hard time processing and eliminating.

What quality did the study have, which size, was it double blind etc.?
How did he find out that the systemic inflammation was the cause and not biomarker?
How did he find out the what the cause of the inflammation was?
Why was the study so long?
I'm asking these questions because you said you've been deep into research sources, so I would have been expecting quite a bit more detailed explanations to qualify that.

The biggest source of fat soluble toxins are the man made ingredients in our packaged and processed foods. At some point the immune system becomes overwhelmed and weakened by the high levels of these fat soluble toxins and is unable to put out the fires of inflammation so the next thing that happens is neuroinflammation which starts in the brain microglia cells which get activated and produce massive amounts of inflammatory molecules which affects the brain centers that produce the main symptoms of fibromyalgia including sending out abnormal pain messages that causes widespread pain, chronic fatigue, cognitive issues, etc. etc.

The man-made ingredients in our packaged and processed foods? What we and many others have been saying all along? I stopped eating those 30 years ago and the 10 years before that hardly any. So am I healed without knowing it? Or rather what I have isn't fibromyalgia? ..... Or - considerably more likely - was perhaps what your doctor supposedly had no fibromyalgia?

I am still trying to make an appointment with the doctor who healed herself from fibromyalgia.

Wait, now I'm even more confused - "just one more question" - didn't you just say you heard about the researcher from the doctor, but you haven't been to that doctor yet? (Ah, but later on you explain it's from 2 videos...)

I hope she can help me too!

Anyone who is deep into fibromyalgia research would judge and put that differently.
Didn't you just say the processed foods were the culprit? So it'd just be about not eating them?

As far as the 10 year research study is concerned, my understanding is the main researcher tried to publish it and got rejected by 19 different medical journals. He couldn't figure out why they wouldn't publish his work and later through asking different people familiar with the process of being published he found out the reason they wouldn't publish his work was because medical journals are funded by the pharmaceutical industry and if the solution to the problem they are researching is not a pharmaceutical drug, they will not publish your research paper!

That proves that you and the people telling you this have hardly read any research papers.
All fibromyalgia research admits that the drugs, incl. the FDA-approved ones, are pretty ineffective.
For that reason there are many papers that point to a great many things aside from meds, like CBT, healthy diet, certain kinds of exercising. There are also many journals that concentrate on precisely these. If the researcher had any sense, he would have approached those journals. And if he had sense he would know quicker why "they" actually didn't publish his work. Also - there are so many papers with alternative ideas on the web - why didn't he just publish them on his own?

And in this case the researcher had tried several different drugs but none had been able to improve the life quality of the fibromyalgia patients he was working with, so he had decided the best way to help those patients was to improve and strengthen immune function by supporting the body with detoxification of the fat soluble toxins that had caused the chronic systemic inflammation leading ultimately to the symptoms of fibromyalgia!

Something all functional medicine doctors / naturopaths do... What drugs were these by the way?

The doctor I am trying to make an appointment with did 2 videos and that is how I know all this information, I have listened to the videos several times and have taken in depth notes, I just hope I am explaining it so you can

Ah, OK, videos, in depth notes - something I do every day. So how do we find the videos ourselves? Or are they a secret too? No, what you are saying may have been said like that in the video, but it doesn't make any sense, lacks all basis and I can't detect anything in depth here at all. So where's the beef?

I am so looking forward to living a pain-free, fatigue-free, clear minded, good-night-sleep, fibromyalgia-symptom-free, life and this is the first time I actually see a light of hope to get my life and health back! Because I believe there is no way our creator God would want anyone to be suffering the way I have for the past 11 years! As I do every day I pray to God for answers and I live my life knowing there is an answer to all health challenges and I will never give up until I find it, because I know neither I or anyone deserves to live life with so much pain and suffering!

Suffering is of course part of our world and isn't justly distributed, as is well-known in every religion/ belief/ mindset. We all need to find our own answers to that, for instance that nature is created finite or "free". Our beliefs show us additional ways to cope, accept and keep motivated to improve the lives and health of ourselves and others. So believing in miracle cures isn't what real believing is about....

 

[ViankaL]

I completely understand all your concerns about everything I shared here! Everything I shared with you about healing my fibromyalgia symptoms I have learned about in the last 10 days! In order to be of any intelligent useful information, I must first get a chance to speak with the doctor whose videos I have watched and extracted information from. Once I do and ask her my questions, hopefully I will know what is true and what is not! I am not sure how familiar you are with blood tests that test for specific immune markers which show whether someone has low grade chronic inflammation, but these blood tests were done on a regular basis in this 10 year study to find out what treatment would reduce the amount of these immune markers, which in turn it means the immune system is winning the battle and putting out the inflammatory process, and that is why the study took a whole decade, the main doctor researcher was looking for results that would help patients eliminate their fibromyalgia symptoms and he didn't stop until he found answers! I found out about all this information and videos through a woman on Facebook who shared on a fibromyalgia group page about her experience of no longer experiencing fibromyalgia symptoms after a few weeks of following a protocol with a doctor on Facebook that lead to her healing from fibromyalgia! To make sure I am sharing useful information with you, I must make sure it will not waste your time with information that is not concise and clear and I can only do that after I speak to the doctor who did the videos!

 

[JayCS]

OK, that does make some sense... as did this part of your first post, by the way:

neuroinflammation which starts in the brain microglia cells which get activated and produce massive amounts of inflammatory molecules which affects the brain centers that produce the main symptoms of fibromyalgia including

Everything I shared with you about healing my fibromyalgia symptoms I have learned about in the last 10 days!

Ah, that makes your information and perspective more understandable as born from hope & exuberance!

In order to be of any intelligent useful information, I must first get a chance to speak with the doctor whose videos I have watched and extracted information from.

Sounds sensible in part. But to me it'd seen more sensible to share the exact details here to gather doubts and questions about the protocol recommended to prepare for the talk. Our experience is that these things are very individual, what works for one will hardly work for another. So even if it was a miracle for one person, many others may have already done everything that is being suggested.
It now sounds as if you are caught up in distrust and hope yourself, as if the video was promising a lot but not really talking straight. Your saying you made detailed notes sounded like there was detailed information. But I've often made detailed notes just to find out it wasn't making sense or wasn't anything new.
So I guess you'll understand that I'll keep on the distrust side and put it way aside until the beef is served....

I am not sure how familiar you are with blood tests that test for specific immune markers which show whether someone has low grade chronic inflammation, but these blood tests were done on a regular basis in this 10 year study to find out what treatment would reduce the amount of these immune markers,

Wouldn't this mean there's a lot of bias involved? Also I can then not imagine that it can be double blind etc. He's apparently starting off with the premise that these are the cause. And I mean how is it possible to keep all other variables the same over 10 years - all these people are doing no other treatments than his? Doesn't mean the results might not be interesting to us, but I can't see it being anything the medical community can approve of - which he should have known. What should normally have been next is to use the protocol to do a 2 month test on a cohort of 30-50 fibromites, double blinded, placebo controlled etc, all the things they need for "proof". That wouldn't then have to help everyone, but some...
I don't know if you've ever followed a protocol with promises before... Also not sure what you've tried at all? After >100 treatments and finding things that help me and not others, while things that help others don't help me, it's hard for me to believe anything.... which doesn't mean I stop looking, I'm trying & finding helpful things every week (at the moment every day...).

 

[cookiebaker]

i think i have to agree with Jay on this... without more information, we are just expected to believe in this?

for me, there is one word that raises my doubt & distrust meters a great deal - Facebook. I trust NOTHING from that source. There is so much misinformation, and outright lies, on there that it is impossible for me to take anything from that source with even a small bit of belief.

if you can provide other sources of this information, i might be more willing to listen, but if that is your only source.. sorry.

 

[sweetkamie20]

To make sure I am sharing useful information with you, I must make sure it will not waste your time with information that is not concise and clear and I can only do that after I speak to the doctor who did the videos!

I really appreciate your enthusiasm vianka . No matter what happens, pursuing info will eventually lead you closer to where you are trying to get to. A+ for seeking!

If sometimes you sense doubts or skepticism from others, just know it's not personal - it's the result of (years of) disappointments. Lots of fibrowarriors have walked a long road which eventually led to switching battle plans from "curing" fibro to "managing" it. That might sound sort of sad, like we have given up, but it's more like being free from discontent and disappointment.

 

[longtimer]

I'm up for being interviewed - I am always happy to help research projects and your topic is of particular interest to me. My husband complains about how I don't like to be cuddled, and I recently felt uncomfortable with my daughter touching me too (she's 31 btw) - I had no trouble with these things earlier in life before the Fibro came on board. It has definitely changed my life and my interactions with people.

I would like to know more about your study and where your publishing it or submitting it - and Id like to know that answers will be anonymous. I am fine sharing on this board, but do have some privacy issues with regards to public use.

 

[JayCS]

I would like to know more about your study and where your publishing it or submitting it - and Id like to know that answers will be anonymous. I am fine sharing on this board, but do have some privacy issues with regards to public use.

I'm sure Oberon'll be back, but in the meantime as I was the first to be interviewed I think I can help: This is a thesis for university, will be as anonymous as we want, may not be used publically at all, and Oberon is in the writing process, so actually not looking for further interviewees....

 

[sunkacola]

I don't know what you can or cannot say or share on this thread,

Read the forum rules if you want to know how things are done here.

FORUM RULES (PLEASE READ)

Fibromyalgia forums support group is here as a place for individuals affected by Fibromyalgia to share their stories, ask questions, get answers, and provide care, support and love for one another. THE FOLLOWING IS NOT PERMITTED ON THIS FORUM: Rude, foul, or abusive language Slurs, slang, or...

www.fibromyalgiaforums.org

Everything I shared with you about healing my fibromyalgia symptoms I have learned about in the last 10 days!

Just saying.....many of us here have been researching this issue for years. We have learned that it takes time to figure out what info is useful and what is not, and that while an open mind is good it is imperative that you not believe what you read online or elsewhere unless there is good, solid scientific and peer reviewed studies to back it up. And even then, no one thing will be useful for everyone. Many folks (myself included) failed to recognize this at first, due to being desperate for answers, and as a result lost money on quack "cures", or wasted time doing or believing things that are not at all useful or true.

this is not to say don't share here what you find! Please do. But make sure that in doing so, you don't make claims that cannot be substantiated, for your own sake and that of the thousands of other people who read these forums.

 

[Oberon]

Wow I missed some exciting discussion!

Vianka, thank you for sharing your experience and enthusiasm, I genuinely hope that you get some answers and tools that help you feel better. I was just reading about inflammation/ neuroinflammation and I think there is some important research being done in those areas that will hopefully bring us closer to understanding why our bodies feel and react the way they do. I also understand and appreciate everyone's hesitancy and warnings to take care and be cautious of anyone offering too perfect an answer, especially if they're asking for credit card details. Or major life changes/ harmful practices. I think it is important we remain hopeful and keep sharing what we learn while also staying skeptical when it comes to our bodies and health.

Jay, thank you as always for being thorough in your responses and keeping everyone's best interests at heart. And for answering questions in my absence, you are forever helpful and resourceful. You are correct, I am not taking interviews at this time. Maybe I should edit the original post to make that more clear.

Regardless of where I am at in my thesis process, I am delighted to see that people are still interested in and participating in this thread! I am always excited and interested in hearing more about how people's perception of touch/sensation has changed post diagnosis and how fibro has impacted people's relationships and intimate lives.

 

[Oberon]

My experience with issues with touch is limited to tender points. Funny story: when I got diagnosed this year and learned about the tender points I had to laugh. For 8 years I thought my husband was deriving some secret, mischievous pleasure from making me wince by massaging really hard on certain areas. I was resigned to the fact that he was doing it just to get a reaction out of me. All those years he pleaded his innocence but I was convinced he did it on purpose to make me squirm. Turns out he was innocent. Poor guy. In my defense I never returned the favor

Oh my gosh this is such a good story! I've definitely experienced similar things, wondering why my loved ones were deciding to cruelly jab me for no good reason! Poor innocent husband just trying to help out and you're convinced he's secretly a little evil. We've all been there. I'm glad we know about the tender points now and can avoid them or be extra gentle when massaging them, less squirming. I've been curious if it's helpful to massage tender points (carefully, gently) or if it's best to leave them be? With the brief research I did online I couldn't find anything, does anyone know?

 

[cookiebaker]

I've been curious if it's helpful to massage tender points (carefully, gently) or if it's best to leave them be? With the brief research I did online I couldn't find anything, does anyone know?

i think this is one of those things that is going to vary from one person to the next, and even within the same person...
for me the shoulder & neck tender points are ok to massage, but dont touch my knees!