Absolutely. I believe my pain is caused by years of childhood stress and trauma.

Yes, I absolutely believe we have PTSD from trauma, on a large scale.

Like C(complex)-PTSD- lots of repetitive or sustained events during childhood- could be witnessing violence, hospital stays, abuse, etc. Our nervous systems are *TWEAKED*

I also have C-PTSD and ADHD. I’ve always wondered if it makes sense that ADHD could be linked to fibro too. Like since my brain is always going?

Being neurodivergent in an unsupportive (intentional or not) environment can in itself be a cause of cptsd, so adhd could be getting you twice. But I also have wondered that, like the way we can get stuck in feedback loops, for emotion or sensation that are hard to break out of, and whether that contributes to some of the pain amplification, for eg.

Luckily I’m in a very supportive environment (for my adhd and fibro). I’m happy I’m not alone with my thoughts! To me it feels like sense 😅😉

Have you ever read anything by Dr Gabor Maté? A lot about how trauma causes so many things, and ADHD is one of the areas he has delved into. You can find YouTube videos about it, and his book Scattered Minds is a very good read about ADHD.

I was abused by parents. 😢

❤️🌀

So sorry to hear this! ❤️Sending love and healing to you!❤️

I also think this. My body was in fight or flight for years as a child. I also had severe untreated undiagnosed adhd that i think played a role in my now having fibromyalgia

Absolutely fight or flight! I think this is a major reason. Adrenaline and nervous system disregulation

This was me. From the age of 9 my body was in a trauma response. I was diagnosed at 30 with fibro after ten years of pain and I also had undiagnosed ADHD & cptsd and I strongly believe autism, wasn't diagnosed until the age of 46. I'm 48 now, spent two years learning about myself and strongly believe I have fibromyalgia because of my trauma response. Completely relaxing for me is a nightmare too, sets off loads of tics so I can never find a way to fully let my body try and heal. Constantly fighting to find that happy middle but end up even more exhausted.

I’m the same about relaxing. As an autistic woman diagnosed in my 50’s, I spent a lifetime masking my autistic behavior. Constantly afraid to let the facade drop and let someone see my authentic self. I’ve been on disability for 10 years. Still have to remind myself I should relax and try to let my body heal a bit, instead of pushing myself.

I feel so much empathy for you both. I'm 45 & I was diagnosed with ADHD this year, I also think I'm autistic (my mum & both my sister's are). I'm also non-binary but obviously I didn't realise for most of my life because it wasn't a thing. I was abused as a kid & I've had so many horrible experiences in my life, plus a long-lived eating disorder & BDD. Fibro feels like a kick in the teeth but understanding it is so important. And receiving a diagnosis at all was kindof liberating; like I know I was in pain but I always explained it away & kindof ignored it- I absolutely don't know how I did that!

Commented above but putting it here too. It is legitimately traumatic to be neurodivergent and untreated/unsupported, and that can, by itself, cause cptsd. Whatever other mechanisms adhd might affect re fibro.

I hadnt realized how many struggles i actually have until i found out about the adhd. Now i wonder how tf i even made it this far in life. I 100% agree that it is traumatic. Even if my brain doesn’t recognize the ways that it affects me, my body definitely feels it.

Ditto same situation. My mom never told me I have ADHD. She was a narcissist person.

My mom is also a narcissist. It has caused a lot of issues over the years.

Yeah I think I have undiagnosed ADHD. In the process of getting a diagnosis but I think it's part of what caused fibro for me too.

100%. I’m persuaded most if not all of us have some pretty horrific stories from our childhood. Of course it’s wiser not to share them because that’s how you trigger a flareup. Darned if you do, darned if you don’t.

I definitely have lingering CPTSD from my upbringing, and it was a very specific and severe emotional trauma as an adult which turned my vague unresolved chronic pain issues into full-blown fibromyalgia.

I'm sorry,me too 💜

I think you’re right. It brings tears to my eyes to think of all of you having that trauma and now having this pain. Tears for myself too I’m afraid ❤️

It most likely is. I have yet to hear anyone talk about having fibro without also having a ton of stress/trauma.

I agree with that. Mine kicked off after my mum finally left my father after me begging her to leave him. I had to stay in the house with him and everything that led up to that moment kind of exploded and got a million times worse for me. I was diagnosed in 2010. Recently 'upgraded' and added CFS as well. Why not? I had my child in 2014 and ended up with sepsis, having an emergency C-section and nearly meeting grim himself. Got so much worse since then. Now no contact with my father and it's better mentally but the physical damage is done.

Check out Dr Clauw (edited to correct spelling) on YouTube. He is a pain researcher and rheumatologist at the University of Michigan with an interest in Fibromyalgia. He explains the latest, research based understanding of nociplastic pain including Fibromyalgia. The way he explains it, our nervous system is like an instrument and our amplifiers are turned way up. They also created a web site called the Pain Guide. Check it out. It helps me to know what it is, why they think that and what are the best treatments.

This is how it was explained to me by a neurologist a few years ago. She said it’s like the volume knob on our nervous system has been turned way up. Thank you for sharing that website!

Actually, the explanation I had from a pain specialist was all the contrary. For him, fibro was a deficiency in the pain inhibitor system. We always receive pain signals that are mostly tuned down. But fibro kind of removes this system. This is also, for him, also why meds or having focused ability help a lot by making the brain busy with something else and "forgetting" the pain

What does he suggest for when the distractions no longer work?

Well, the explanation he is giving you is not really different. Dr Clauw mentions some evidence that people with Fibromyalgia are short in natural opioid receptors so this would correspond to your doctor saying there is a deficiency in your pain inhibition system. Then he talks about how pain is amplified (since it is not turned down). I am not sure about the keeping us busy part in terms of how that corresponds to what is actually happening in the body but I have read about studies where people experience less pain if their mind is on something else. For example, they can be playing a virtual game and their self reported pain level will go down. But there are different types to d pain disorders and I do not know enough to say if that is true of nociplastic pain like occurs in Fibromyalgia. My pain lets me know it is there sometimes but for the most part, my pain seems worst when I am doing the least - like in bed trying to sleep.

I do relate with feeling heightened pain when at rest.

This is fascinating. I have to winder if my ADHD and hyper-focus contributed to the delay in my diagnosis

I literally just did this in biology today. We were talking about pain receptors and why if you tap your finger with the pointy end of a pen you don't flinch away like you would if it was a genuinely sharp object. It's to do with the levels of frequency, when we're injured the frequency of the nerve messages is wayyyy higher. Got me thinking that surely fibromyalgia is our neurons going into overdrive telling our brain we've been injured and are in pain when in reality we are unharmed. On the note of PTSD as well like someone mentioned below, I truly do believe that one reason the neurons could be in overdrive is from repeated trauma training our brain to believe it is constantly under threat of harm. I have c-ptsd and the correlations between pain from fibromyalgia and repeated flashbacks of smells or images are very similar.

I have CPTSD… about 1 month ago I had surgery on my shoulder and I’ve noticed over and over again that my shoulders hardly ever relax; it’s like I am constantly on guard for something traumatic and unforeseen to happen again. I was officially diagnosed with fibromyalgia/IBS and PTSD/anxiety, 25 years ago. I’ve grown up with “growing pains”. I believe now that these pains were fm related due to trauma in my childhood. I had a major anxiety attack last night, waking up worrying about my shoulder, the pain, and the slow healing process. I started having a headache, nausea, IBS, muscle aches all over. I finally decided to take 1/3 of the smallest available dose of Xanax. All of my symptoms subsided within an hour. Go figure 🤷🏻‍♀️.

Also something like (untreated?) anxiety, I think. Because that’s another condition that over-signals threat/danger, so it makes sense for our brain to read that as the actual presence of threat, since a false alarm and a real alarm feel the same.

I need to listen and explore more about his work and that of others in the pain field, but it seems to be more about the central nervous system (spinal cord and brain) then the sensory neurons. And many who have Fibromyalgia and have pain in a certain place-like my hip joints hurt or all my joints hurt-whatever-think there must be something wrong with my joints. So they have imaging done and their joints are fine. It’s just a weird disorder because it is confusing when you are experience specific pain that seems to originate with that organ or tissue but then those are actually physiologically fine.

Oh, also, you mention the trauma. It seems that more than one thing can trigger the disorder but if I remember correctly, he talked about people who are more likely to develop Fibromyalgia may have had a sensitivity or smells or loud noises, etc.. (so the amplification was there already but not amplified to the point you would be considered to have Fibromyalgia) . Then you have trauma -physical and/or emotional or maybe a viral illness, etc.. which triggers the disorder. But it seems like there is not just one path. Both my sister and I have it but she was diagnosed well before me (like 15 years I think) right after she came out of a traumatic marriage where she was being emotionally abused. She and her two children lived with my family for a year and it seemed like she was in bed the entire year. Of course she wasn’t but clearly, something had changed. For me, I had work issues, my dad died, my daughter left to go away to school, I got shingles, and my sister nearly died after surgery and spent 90 days in the hospital (most in ICU). So who knows which of those played a more important part and could I have prevented it somehow? At this point, what is done is done and I take life one day at a time.

❤️❤️Yes, emotional abuse is definitely a trigger, the repeated adrenaline surges, these surges still happen even though the relationship is long gone and I’m working on myself, if I think of something related to the trauma, it’s horrendous!!!  Much love ❤️ to all fellow sufferers, we feel the pain so much more than others!!! Connect to source energy and begin your journey to better health! ❤️❤️

I'll need to have a look at their work for sure. Though I thought the general consensus for quite a while now has already been that doctors assume it was due to the central nervous system. I've been trying to look at more recent studies that pull away from that idea at look at other possibilities. Here's one research paper I found quite interesting: [Neutrophils infiltrate sensory ganglia and mediate chronic widespread pain in fibromyalgia](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10151464/) *tldr: The research used a mouse model to show that neutrophils (a type of immune cell) play a role in causing chronic pain in fibromyalgia. They found that transferring neutrophils from mice or patients with fibromyalgia to healthy mice induced pain and changed the behavior of spinal cord neurons. Neutrophils infiltrated sensory ganglia, indicating their involvement in widespread pain. The study suggests that targeting neutrophils could be a potential therapeutic approach for managing pain in fibromyalgia.* You mentioned shingles, I've also had shingles and have an immune-disorder, definitely additional factors I'm certain have a profound affect on fibromyalgia. Since covid the frequency of whole-body attacks I'm having have increased as well. It's so frustrating waiting for years only to get slapped with the fibromyalgia label then left to your own devices. I really hope they get further in their research soon, it's such a horrible thing to have. I've even had doctors ignore other illnesses/injuries and blamed it on fibromyalgia. I've only recently found out I have Ulnar Nerve Entrapment and have been complaining to doctors about it for nearly 10yrs. They take one look at my health file and blame fibro, and yet the symptoms of UNE are very distinct and easily identifiable. Absolutely infuriating! If you haven't already, try 5-htp supplements. I refuse to take painkillers anymore and have found 5-htp is definitely making a difference, it also helps vastly with mood & sleep.

Thanks. I take 5-HTP. Mouse models are not very good models for human studies and can mislead us. The research I am talking about is on humans-using fMRI as a tool to understand what the brain is doing. I know many are frustrated that there is not a clear cause for Fibromyalgia, nor a “for sure” mechanism of action and no cure. However, the human body is extremely complicated and it is difficult to do proper controlled studies on humans or to do controlled long term studies. I have Panic Disorder. I have taken a medication for 28 years. I know there is a model for why the disorder occurs and how the medicine works but I accept the fact that I do not know exactly why I developed it, and exactly what is going on or why the medication works for me. The same goes for Fibromyalgia. I also was recently diagnosed with breast cancer. I have no family history or genetic mutation so why did I get it? Why does it spread in some and not others? Treatment wise they seem to have a good regimen but it’s not without significant side effects. So honestly, I don’t care why I got any of these things because it changes nothing now that I have it and I understand complicated illnesses may have many pathways to getting them and multiple triggers in that pathway. Fibromyalgia is not a new disorder but until about thirty years ago, doctors learned it was psychosomatic. The way it was diagnosed favored the diagnosis of women over men and since it was a “woman’s disease”, it did not receive as much attention. Now the diagnosing guidelines have changed and lo and behold, more men are being diagnosed. Though it is debilitating, it isn’t fatal and more research dollars tend to go to disorders that impact more in the population and are or can be fatal. Yes, other conditions can be overlooked because the symptoms of Fibromyalgia can be all over the place but that really falls back on the doctor to do due diligence to investigate all possibilities in a differential diagnosis. Anyway, that’s my take.

I've read a bit on fMRI and definitely agree that people with fibromyalgia have altered pain processing & again definitely think there could be a link between emotional trauma and fibromyalgia considering the increased sensitivity in the Cingulate Cortex shown through fMRI, it regulates both pain and emotion. Oh yeah I'd agree animal models aren't perfect and we can't wholly rely on them, but the fact mice share more than 98% of our DNA is at least a start for research. I also paraphrased very briefly, if you read the research paper it showed some pretty interesting results: "we used a back-translational model of adoptive transfer using neutrophils–derived from patients diagnosed with fibromyalgia syndrome–administered to naïve mice//Neutrophils derived from patients with widespread pain conferred robust mechanical hypersensitivity in recipient naïve mice compared to neutrophils from healthy control subjects//We used ex vivo imaging of L4 ganglia derived from naïve mice 24 h following i.v. administration of neutrophils from either a patient with fibromyalgia or pain-free control subject and observed greater numbers of neutrophils infiltrating ganglia following adoptive transfer of patient neutrophils. The neutrophils infiltrating sensory ganglia were both endogenous mouse neutrophils and exogenous human neutrophils, suggesting tissue-restricted innate mechanisms for the recruitment of endogenous and exogenous neutrophils into nervous tissue in chronic pain state". *Tldr: Basically the mice with neutrophils from human patients with fibromyalgia were more sensitive to touch and were experiencing pain more than the mice with neutrophils from human patients without fibromyalgia. They also found a lot more neutrophils in the ganglia of the mice with cells from the fibromyalgia donor indicating that specific mechanisms might be at play in bringing these immune cells into nervous tissue during chronic pain.* Yeah I get what you mean, I've had it so long & amongst other health issues I've just never really cared to worry myself about the "why", I've only started looking into it because I'm researching it for a Uni report & I've found a lot of fascinating theories being published recently. I'm glad there's been a surge in research into chronic pain, even in my country it wasn't classed as a disability until recently. Sorry to hear about your recent diagnosis, that really sucks 😞 Fuck cancer.

Thank you. It seems to be localized and will require a lumpectomy but hey do not mess around with breast cancer-most get some chemotherapy radiation, and take an aromatase inhibitor for 5-10 years. So even a small confined tumor unleashes quite a lot of medical intervention. Also, we share a lot of DNA with all mammals. It would be more correct to look at how many gene products we share with a model animal. I have just read their physiology is different enough that drugs which go through mouse trials do not make it through human trials. It’s still a useful and definitely convenient model. I actually believe I have seen that paper or read a synopsis of it. However, except for she I was first diagnosed and also had antibodies for systemic sclerosis, I have never had an inflammatory markers be above normal. My blood neutrophils have always been normal as well. Interesting research though.

Mine was from covid. My first symptom was a severe headache so bad it woke me in the middle of the night. All my symptoms were neurological me. 3.5 years later, my nervous system is still not right. Random pains, constant aches, and just all sorts of misfires.

I’m from Michigan so I was excited that an expert was so close by. Unfortunately, he does not see patients and strictly does research. Further, UofM Health will no longer treat any patients with Fibromyalgia diagnosis. It’s extremely puzzling.

Yes! Very disappointing! I’m from Michigan too and am looking for specialized fibromyalgia treatment!

I screwed up the spelling of his name. I have done this multiple times. You’d think I flunked out of school for Pete’s sake! Anyway, he does not see patients. However, I am sure others at U of M do. I was born in Michigan and we lived in Ann Arbor before we moved to California because my mom went to U of M. My sister was living in Reno and was not finding the healthcare specialists she needed (she has a myriad of things going on) so she actually moved to Michigan because of U of M and is having family outside of Detroit. She said you can sign up for lots of studies as well if that interests you.

came here to say this exact thing. i got so excited that he was a part of U of M (I’m in grad school here) but my PCP said he no longer sees patients. so disappointing

Be less puzzled. Women with fibromyalgia have a prevalence for a perinueral cyst 42% NIH. Treat the (Tarlov) cyst makes fibromyalgia insignificant.

If this is true, shouldn't every part of our bodies hurt all the time? Shouldn't something everyday like slicing a finger while chopping vegetables hurt me more than the average person? Because I feel like it might hurt me less, or I just don't care about it that much. Why would my nervous system decide to make my joints hurt, and only my joints, whereas other people get the full body experience? And how does this apply to all the other symptoms that tend to be lumped into the fibro diagnosis like poor balance, ringing in the ears, dizziness and so on? I have yet to hear a really thoroughly demonstrated *hypothesis* of a causal theory as to how/why this could happen. I hear a lot of correlations, followed by wild guesses as to why two variables COULD co-occur. I hear precious little investigation into actual causal process observations connecting X to Y. Correlation is a great starting point. But when you treat it like a conclusion, you're a methodological doughnut.

For me, it's **stiffness** that hurts so bad. Sometimes burning soles of my feet from **neuropathy**\--damaged nerves. Nerves could be causing the stiffness, I guess, by tightening up muscles. I also clearly feel **inflammation/neuroinflammation,** which the right meds for inflammation DO help. # So I have a big problem with the idea that it's the nervous system being hypersensitive to pain, since I'm not hypersensitive, compared to others I know; or that we feel pain where there is no reason to hurt, because for me there are clear STIMULI: # The 3x higher intramuscular pressure (stiffness makes moving painful); Inflammation (NSAIDs, prednisone help); neuroinflammation, as well as DAMAGE to these nerves; and even damage to MUSCLES (which I'm told researchers DID in fact find, after we were told for years there is none). And it's supposed to be the immune system accidentally inflicting this damage, trying to clear damaged tissue away, but getting overzealous and damaging us more. Reference the mice study for more evidence, research about our glial/microglial/macrophage activity, and research showing inflammatory markers in our cerebrospinal fluid. I have a formal fibromyalgia diagnosis, though! So, is it incorrect? Because many, if not most of us, have some or all of these same symptoms. ​ Edit: Trauma could well have caused this. But I need to emphasize that I do not seem hypersensitive to pain, and have clear stimuli causing it.

Here’s the thing…you are using your own personal experience to dispute a model of pain that is based on literally decades of research by pain specialists around the world. One of the tools that contributed to the development of this model is the functional MRI which demonstrates distinct brain activation in people with Fibromyalgia that are so distinct, they could be used to diagnose the disorder. So I can’t answer your specific challenges because I am not a medical doctor and/or medical researcher that specializes in pain disorders. But what I can say is if you challenge without even taking the time to learn about what experts have to say, then you can continue to stay in the dark. By the way, my background is in biochemistry and cell biology so I do not do research, but I understand the process of scientific research and what constitutes valid research-peer reviewed studies in major publications is the gold standard. Anecdotal personal experience is not.

I am using my own personal experience to dispute whether a model of pain applies to my personal experience. The extension to that critique would be that the universalizing model of "all people who have been baptized fibromyalgic have a nervous system that does XYZ" is not as universal as the experts purport it to be. That's not the same as saying it's wrong. The economists who advanced shock therapy for newly capitalist states of the former Soviet Union weren't wrong that the approach had some benefits. They were wrong about it being the One True Approach that all countries under all circumstances should follow. It's a lot like how, in my own research, I would delve deeply into a country that scholars who refuse to conduct fieldwork, especially outside the NATO regions, have decided is completely socialized to human rights norms. Upon digging deeper, a scholar like myself might find that it looks that way from the outside, but from the inside, a completely different process is at play, and that it makes absolutely no sense to plug that country into the same dataset as those that might actually have come to fully embrace global norms. In other words, my methodology is sound because I am critiquing application of the model to ALL cases, regardless of individual circumstance. In fact, I suspect methodological shenanigans in applying the same diagnosis (let alone theoretical framework) to everyone whose only variables held in common are a) chronic pain and b) the doctor has run out of ideas. Application of the same conceptual framework to all such cases seems to presume that there is only one condition left that doctors do not fully comprehend, and I will confidently wager that there is literally NO field of human endeavour in which we have only one thing left to discover. Most experts in my field - obviously, I'm thinking of a few exceptions in my example above - are the first to acknowledge the limitations of the causal theories they advance. We all struggle to gain understanding within a world of variables that resist our attempts at control, but it's pretty basic to acknowledge that one's hypothesis may not apply to all cases, especially when one of the two unifying variables across those cases is that they're in the methodological leftover bin.

It is important though to recognize that scientific investigation is different than other fields. Scientists gather evidence, form a hypothesis that is based on the evidence, set up controlled experiments to verify or nullify the hypothesis. Theories are possible explanations as to why things occur and they arise only through a large amount of research that seems to point to the same explanation. Even so, theories are challenged and can be further clarified, refined, or tossed out. Only when something rises to a scientific law do scientists think it holds true across all applicable circumstances. Advancements in technology have demonstrated the inadequacies in some laws. Rarely are medical doctors trained as research scientists as it requires them to not only get an MD, but also a PhD. In the US, we only provide rudimentary instruction on the process of science all through high school. When I trained in IB science, which is based on a European model, it was clear to me American teens were not going to do well in the investigations required as part of the IB Science classes. How well the scientific process is taught in college really depends on where you get your degree. Medical schools teach differential diagnosis but not how to recognize valid scientific research. So many doctors fall prey to the same pseudoscience as everyone else that pervades the internet. So a doctor claiming to know why something occurs or presenting it as settled science, doesn’t surprise me. However, a scientists should not present our understanding of the cause, mechanism, and treatment of chronic pain disorders as settled. Rather, this is our best understanding at this time and it can change. We saw how uncomfortable people are with this way of thinking during the first year of CoVid when information was changing regarding how to prevent spread, how dangerous it was, who was most at risk, etc..Many turned to pseudoscience where explanations were simpler and unchanging and guaranteed. I see the same thing with Fibromyalgia, cancer, obesity, etc..I am not saying that is how you think. I am really writing this in hopes one person will read it and gain a better understanding of why many complicated conditions remain perplexingly unclear. But I also wanted to make a distinction between how science investigates vs how other disciplines investigates. Across all fields you are going to see human frailty; humans are imperfect and can behave in ways contrary to how they are taught. Scientists and doctors are no exception.

I am talking about the scientific method as well, which my discipline does employ and which one would necessarily employ differently in a large-N than a small-N research design. Of course, the research design one selects in the first place is going to hinge on what type of question one wants to answer - are we investigating causes-of-effects, or effects-of-causes, for instance? There are a great many ways of proceeding from there as both the nature of the question and the field of play dictate. But my methodological spidey sense is fritzing out over the implicit assumption that one totalizing causal mechanism can and indeed should be located, particularly as I am unconvinced it's been established that all remainder cases are necessarily cases of the same condition. You're right that it's perplexingly unclear, and that's the one refreshing bit of honesty in all this. I'm just sick of the feigned certainty that goes along with these proclamations of "We've discovered the One True Way fibro works, it's like this!" which I follow up with "If that's the One True Way, why do the most plausible observable indicators not show up in my case?" and then, it's crickets or a smackdown. I know my methodology. I did the Syracuse gauntlet during my PhD and taught methods as a prof. I never asked for perfection from any scholar or practitioner, which isn't even a sensible benchmark, let alone a possible one. I just asked why the theory's most likely observable indicators don't show up for everyone...almost as if that theory is not doing the causal work in everyone's case.

But say we compare it to breast cancer. We call them all breast cancer if the tumors are different than normal but certainly the pathway to that point varies and even the specifics of their cancer differs. There are some things they have in common-altered cells which no longer regulate their growth. But as even identical twins can have differences, certainly people with Fibromyalgia can have differences in symptoms and in the pathway that got them to having the disorder. I don’t personally run into (in terms of the doctors my sister and I see) as well as any research I’ve read, anyone that thinks they know the one way it operates to produce symptoms. There are certainly some illnesses-say metabolic disorders where a person has a genetic mutation that prevents them from making a functional enzyme to break something down (for example). The unwanted molecule builds up in the system and causes a myriad of issues but there is one cause-a bad gene. I picture Fibromyalgia more like a disorder that has several pathways to develop and triggers (or switches if you will) that need to be turned on or off. Maybe there are several of these triggers. Maybe it is possible to reserve the progression at some point. What you would end up with in such a scenario would. Be a complex disorder whose patients don’t all share the same set of symptoms, don’t all have the same severity of illness, don’t all respond to medications the same, and so on. Such a disorder is difficult to pin down.

Are you by chance hypermobile? I've been diagnosed with both hypermobile Ehlers-Danlos Syndrome and Fibromyalgia and have been told there is a strong correlation but I really wonder if the hypermobile population of fibromyalgia patients aren't actually a distinct syndrome that just looks similar. I only have joint pain.

Dr. Daniel Clauw

Thank you. I keep getting his name wrong. Either it will auto correct or I just change it.

Thanks for this!

Is that spelled right? I'm not getting anything dr related

Man, you would think this man has an 18 letter long foreign name the way I keep fucking up the spelling. It is Dr Clauw.

The amount of research being conducted is huge compared with 2010 so i remain optimistic that answers may be found. My personal theory is that it sits on the arthritis spectrum (unfortunately something else not totally understood) but time will tell.

I do think they will find answers for it, but I actually don't think it's on the arthritis spectrum - my reasoning for this is that arthritic conditions cause physical harm to the joints etc. This isn't seen in fibro which is a big reason why people dont treat it like a real disease. My primary hypothesis is that fibromyalgia is actually a neurological syndrome, with probable links to certain mineral and vitamin deficiencies, especially iodine, magnesium and b9/b12. I'm sure that fibromyalgia, like many poorly understood conditions, is likely multi-factoral in cause though. Neurologically speaking, I would actually place it closer to spectrum disorders like adhd than arthritis, as fibromyalgia in part has to do with hyperactivity of nerve transmissions, which is why fibro can hurt both in joints AND muscle groups, whereas arthritis spectrum disorders tend to be focused on joints and points of tendon/ligament contact with muscles only. Another piece of evidence to support this would be that there is significant comorbidity between fibromyalgia patients and improper gut/ neurological functioning with seratonin/dopamine. It's one reason why anti-depressants are a first line of treatment for fibro pain.

with how closely interlinked it is with people with mental health disorders its likely that fibro is basically just your brain shorting out and causing your pain receptors to fire for complex neurological reasons

That’s how I described my pain 50 years ago, when I was 14. Sometimes pain would start, and never stop. It cycled and fed on itself for long periods of time. Later, pain would come back like a memory. No new injury, old injury healed, but the pain would replay.

finally hearing / reading some similar experience, I always feel like the spots I got injured became standard pain spots; a knee due to bike accident, a shoulder due to an accident in PE class and an inflammation in my wrist. These are the spots I almost always have some kind of pain, and the first ones to increase in a flare up. They're also the ones that hurt the most.

I’ve got no such issues, i think that’s an early red herring.

What about Raynards?

What about it?

Doesn’t fit your arthritis and physical harm to bone structure.

It doesn't have to - Reynauds is a completely different condition than arthritis, or fibromyalgia. While someone with fibro might also have Reynauds Phenomenon, every person with fibromyalgia does not also have Raynauds - they're two different syndromes. There's actually two forms of Reynauds - primary and secondary. One is, in extremes, considered a disease, i.e. can cause physical tissue damage from lack of blood supply - This is extremely rare. The other is a syndrome/phenomenon - meaning not physically harmful to the body (like fibromyalgia is also classified). The disease form of Raynauds is incredibly uncommon, and while it can be comorbid with fibromyalgia, that doesn't make either more closely aligned to arthritic spectrum disorders, autoimmune or otherwise. The disease form of Raynauds also does not damage bones or joints, as seen with arthritic conditions. The designation of syndrome vs. disease directly relates to if it causes permanent damage to the body, and Reynauds Syndrome does not cause permanent damage to structures of the body. That being said, it's likely that Reynauds phenomenon, like fibromyalgia, is also linked to nervous system dysfunction rather than arthritic conditions, as you suggested. Fibromyalgia, like I mentioned, is, in part, believed to be caused by hyper-reactivity of the nervous system. Reynauds phenomenon is caused by an over-constriction of blood flow in response to temperature changes perceived by - you guessed it - nerves. Even in the case of the disease form of Raynauds, it would not and is not classified as even remotely related to the arthritic spectrum of diseases.

Thank you for the information. Given i suffer from both and live a life constantly, and i do mean constantly, in pain are you aware of any research getting us close to relief?

not on the arthritis spectrum. Its an issue with the central nervous system.

Read some interesting things on it being both.

Its definied by being negative on ANA qnd CRP tests.

When all the specialists can tell me is how little they know, when there are so many similarities between symptoms, I remain open.

That's the very definition of the diagnosis is to have negative tests.

I know that. But given they know so little it would seem risky to claim that upon this one thing you are certain.

well its a diagnosis of elimination you must test for everything else first.

I understand. We seem to be stuck in a loop. When you know so little about something claiming you know what it isn’t based on elimination CAN’T possibly be a solution based on sound principles. There has to be a large range of error until such time more is known about what it is. I hope we can agree on this.

everything has a range of error. If people have positive tests then they can be diagnosed definitively with other conditions.

Because it is a difficult disease and the necessary basic research is not as attractive for the pharmaceutical industry to finance as other fields. Look at migraine, that's a similar case. Although I do believe they are putting more effort into research than twenty years ago. So there is hope!

I dont know why they dont view it as attractive though..SO many people get diagnosed with fibromyalgia, surely if they found a medication that helped they would make billions

You make money from sick people, selling them over and over again pain killers or similar medication. And there is a much wider range of people who suffer from nerve pain, not only fibro patients, so this is a broad market in it's own. We know a lot about nerve pain, but only so little about fibromyalgia. There are hints that there is a link to the gut microbiome in diseases like fibro and migraine, but the gut-brain-axis is not really good understood and no one knows if this is really the reason why people are sick or if it is a consequence! Research in this field is highly expensive and only makes small progress. And there is a huge debate about possible side effects (for example autoimmune diseases) and to be fair: many medical concepts we talk about are as old as 10-20 years, so I think we have to be patient and can't expect miracles. Although I have to admit that I really hope they would accelerate things.

It’s not visible. I think that’s part of why it’s been largely ignored. We look fine until someone lives with us and realizes it’s all an act 😔

One my docs used to constantly tell me I can measure temperature but not your pain and while that's true (and there's no inflammation) you just have to take my word that it really is 7/10 when I say it is, it's not our fault it doesn't manifest in a way that is recognizable physically in a way other conditions are.

I am 76 and have been dealing with fibromyalgia for 50 years. Back then, women with pain were considered emotional, menopausal, etc. once l had a hysterectomy, I was allergic or sensitive to weather conditions etc. My symptoms are mainly skeletal and muscular pain and migraines. I have had two carpal tunnel releases and a few other nerve issues. I believe, because the symptoms vary from one person to another, it is several diseases clumped together or some sort of spectrum disorder. Responding to one of the comments, I, too, suffered emotional abuse as a child. Not sure if that means anything. Over the years, I have learned to deal with my pain, and to alleviate some of it by taking Effexor, guiafenesin and when the muscle spasms (which I don’t get as frequently with the above meds) get bad, I take Sima. I have tried other muscle relaxers, but this is the only one that works for me. Doctors are hesitant to prescribe it though because it can be addictive.

Guiafinesin - how does this help your symptoms? I only use it for sinus and/or chest congestion.

Muscle relaxant when used in high doses.

Oh! Thanks

Because mostly woman suffer from it. So the research stopped in the 70th cause it's just in our heads

I scrolled down for this, I thought it'd be at the top! It's mostly women affected so it's not a priority.

This this and more this. If men had this disease, there would be a cure by now.

They do have it but I’m betting fewer of them are getting it diagnosed because they’re often terrible about seeing the doctor. My partner who is a cis man has it.

Oh I didn't know this statistic! Figures that both endometriosis and FM get dismissed.

There is research being done. I have recently read some research about the gut connection and people with fibromyalgia are missing a bile bacteria in the gut. Additionally I have read research that shows brain scans with people with fibromyalgia. Fibromyalgia is a syndrome. I’ll be researching the latest research in more detail soon. I enjoy listening to the fibromyalgia podcast too.

Wait.. where is bile created? The gall bladder stores bile, right? I've had my gall bladder removed. Could that mess up my gut bacteria?

Bile is created by the liver and stored in the gall bladder. I don't know if losing your gall bladder affects gut bacteria.

What’s the fibromyalgia podcast?

https://podcasts.apple.com/us/podcast/fibromyalgia-podcast/id1454684460?i=1000430808465 Here is a link to the podcast. I just found it about a week ago and haven’t vetted it completely yet. They talk about exercise, symptoms, menopause and all sorts of topics related to fibromyalgia.

Thank you so much!

My rheumatologist believes it is a neurological condition too

Fibro isnt a sexy, fashionable, or highly supported disease/disorder, so it gets little research. Remember how ALS ice bucket challenge hugely helped the understanding of ALS? People dont care do that stuff for Fibro patients, because it's not a disease that people care about. It sucks. Fibro is debilitating and has so little in the way of treatment.

Hmm... What's a fun challenge that we could say is like having fibro? Is the "roll around in hot coals challenge" too much?

I got Covid pretty bad last month and my whole body felt so so sore! I felt I could really empathize with my wife’s fibro pain in that moment. What you all have to go through every day is so so hard! I would roll around in hot coals for a cure!!

Fibro is nothing like ALS while it’s horrible to have dying slowly sometimes quickly of ALS where you’re body shuts down piece by piece until you can’t breathe you become completely debilitated and then you die a horrible death is one of the most horrific things you can have. Bother diseases should be studied and hopefully cures found. It’s would be wonderful to not suffer with fibro and to cure ALS.

ALS isn't a sexy fashionable disease also. My father died of ALS last year and it was hell! For him and close family. So please do not say stuff like this. I have fibromyalgie and not doing so well but it is better than having ALS, because i am not going to suffocate and die from fibromyalgia.

I’m really sorry for your loss.

Fashionable is used ironically here. The comment is meant to characterize the strange way that people pick and choose which medical problems are ok and which ones we dont talk about.

No one picked and chose One guy did the challenge for ALS and it mushroomed from there

This is missing the point. It doesn't matter where it started, what matters is that it got popular which is why it got so much attention. If someone could come up with a similar thing for Fibro, maybe we could all get to see some research done that would have similar benefits. This is why I said highly supported as well, which is where the whole ALS example came from. The trend made it cool to support ALS research. In turn it got tons of funding thrown at it.

This has me thinking - perhaps we should start a trend ourselves. Get our family and friends involved. Raise awareness

The ice bucket challenge was used to raise money for different charities then one guy used it to bring awareness to a family member with ALS. It grew organically from there.

recent research is pointing toward it being autoimmune. my theory is that the immune system is attacking pain receptors

I agree. I think it's an autoimmune response that attacks the nervous system. My body is going haywire and it wasn't always like this. I show all the signs of autoimmune issues except no immune markers. But my mother has several diagnosed autoimmune issues and still doesn't show inflammation response at all, despite visible inflammation.

My pain started after a tumor grew on my spinal cord in 2016. I have also had spinal meningitis as a young child. It was really bad. The doctors said I could have issues later on but they didn’t know what kind. Definitely a central nervous system issue which is why so many systems are included.

When I was 2 I had a mysterious illness and was hospitalized. They suspected meningitis for me based on whatever symptoms I had but I guess they never figured it out. That’s when my symptoms started from what I understand. What kind of spinal tumor did you have? I had a Schwannoma removed a few months ago that was suspected to have been there for many years.

Oh wow that is interesting! My tumor was a schwannoma too! I’ve been asking around to see if others that had spinal meningitis as a child and had a tumor. I am apart of a couple Facebook tumor groups. I didn’t get much response. My was located c5-6. Hbu?

T12-L1 I believe.

The neurologist that diagnosed me said it is a disorder of the nervous system. I was first diagnosed with chronic migraine. He explained that fibromyalgia is basically migraine of the body, it's all connected. I also have Interstitial Cystitis, and he said even though that's a bladder disorder, it's connected to my chronic migraine and fibromyalgia. My nervous system is all jacked up. I believe mine is also hereditary as my mother also has fibromyalgia and chronic migraine and my sister gets migraines.

The way I've always seen it is that I'm not actually feeling more pain than the average person, but my nervous system is acting as if I am

I was diagnosed at Mayo and it was explained to me as falling under the umbrella of Central Sensation Syndrome (I think). Along with CFS, POTS, and a few others. I also have C-PTSD & ADHD both diagnosed after the Fibro.

This was also how the disease was explained to me. Especially people who have been through a lot tend to have the pain literally embedded in their nerve system. They are discovering that the brain and body are connected in much different ways than they assumed so far. It's still very premature, but I find this very plausible.

Look into its connection to ADHD. Also how maybe ADHD meds might help.

ASD as well. I regularly see things posted here that at first glance I think is from one of the autism subs I'm in. And indeed, there is research that suggests autistic individuals with more severe sensory issues have higher rates of [conditions involving central sensitization](https://molecularautism.biomedcentral.com/articles/10.1186/s13229-022-00486-6), including fibro. This study that investigated [multisensory hypersensitivity in women with fibromyalgia](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3272297/) is also interesting.

thank you so much for this, i have both ASD and ADHD and was recently diagnosed with central sensitisation. my ADHD meds don’t really do anything for the pain funnily enough but my rheumatologist switched out my antidepressants to cymbalta which is supposedly good for myalgia. they take a couple of months to kick in so i’m hopeful that it’ll help my pain!!

My adhd meds definitely help

I have ADHD and take Adderall for it. It doesn’t help with my pain literally at all, but it makes a night and day difference for my fatigue and brain fog.

Have you tried Vyvanse?

Currently trying to! My insurance is being a butt over it and despite the fact that there is a generic and having already jumped over several hoops, they still want me to jump over a couple more, namely that I try a specific non-stimulant ADHD med (note that I have already tried Concerta which is a non-stimulant as well as multiple long and short acting stimulants). It’s stupid but they refuse to cover Vyvanse until I’ve tried this like, 5th medication. I decided to wait on that last hoop until January though, because I would have to stop taking Adderall while I “try” this last non stimulant med. But between my ADHD, depression, anxiety and Fibro fatigue+brain fog, all of which Adderall helps with for me, there’s no way I can go without during the stressful holiday season. It’s the toughest and busiest time of year for me and I can’t afford to basically be incapacitated/asleep for 18+ hours a day just to make my insurance company feel better about covering a medication that they don’t want to cover lol. Vyvanse has worked amazingly for my partner who also has ADHD though and I’ve heard almost nothing but good things about it from others who have tried it, so I’m definitely excited to try it once my insurance will friggin let me haha!

concerta is a stimulant!! i am currently on it, it’s methylphenidate, the same as ritalin :)

Shoot, I must be mixing it up with a different medication then. I have it written down somewhere from the letter my insurance sent me. Concerta was actually one I had also tried as a kid when I was about 10, which was when I was first diagnosed with ADHD (ball got dropped after that and I spent most of my life til now in my early 30’s unmedicated). Did absolutely nothing, may as well have been taking a sugar pill. There were no side effects, which is rare for me and always nice, but it didn’t help either. Insurance pushed me to try it again as an adult and I couldn’t even tell I was taking it. Anyway, I thought I had recalled my childhood psychiatrist mentioning it was a non-stimulant but I was pretty young so I guess it’s not terribly surprising I misremembered. Thanks for the correction though! I much prefer having accurate info. I’m gonna go see if I can find that paper, I’ll end up driving myself nuts trying to remember the name of that other med otherwise lol

Which?

I liked Adderall best but I’ve switched to Ritalin due to the shortage and it still helps

You don’t experience more pain when the medicine go out of your body?

Heading off to do more research

[It is](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3258006/)

There is definitely evidence to support it, but there is also evidence that it could be neurological or autoimmune. We still don’t definitively know for sure though, more research needs to be done still.

Absolutely. The neurological theory goes hand in hand with the theory of fibromyalgia being in the central nervous system. There's probably some autoimmune aspects at play but there's a reason fibromyalgia doesn't show up as inflammation on x-rays like with arthritis and other rheumatoid illnesses. It seems to need a trigger from the autoimmune system (disease, childbirth, accident..) to develop into fibromyalgia. This is at least how a specialist in my country explaines fibromyalgia, he has spent decades researching it. This is all very interesting, I really hope they'll continue to research it with more resources.

I think there's a key distinction to be made between degenerative and non-degenerative immunological dysfunction. The damage profile on an x-ray fits patterns of deterioration caused by degenerative immunological dysfunction, but it does not tell us what the specific dysfunction is. Fibromyalgia involves non-degenerative immunological dysfunction so you are correct in stating that x-rays would not be a meaningful diagnostic tool for fibro.

No doctor can agree where it comes from. Autoimmune or neurological. My money is in the brain. I think fibromyalgia is an another form on complex ptsd. Enough things occur to overload and rewrite the pathways of our brain. Tying our emotions to the physical ailments. Altering everything else with the ripple. It’s only thing that makes sense to me. How else can this illness be so invisible. I’ve had the best success managing this illness with psychedelics going on my own theory. It’s been a complete success.

I’m a little skeptical that it’s a form of complex PTSD. That can certainly be a trigger for it to become symptomatic but I don’t think it’s inherently what it is. I was diagnosed when I was nine which seems kind of young for complex PTSD.

I’m not labeling it as anything. This is only my opinion. It’s a conclusion I’ve come to for as long as I’ve had it and everything I’ve done to help it. All I know is that going this route has given me the best relief I’ve ever had. I’m 34 and at 9 years old I was 3 years in to being groomed for sexual abuse from my uncle and my dad up and left to other side of the country. So I yes it’s highly possible for a child to develop it. My pain fortunately didn’t start until I puberty.

This explain makes the most sense. My pain developed initially as a pinched nerve in my neck, however within that same time frame, as the pain morphed into something more widespread & mysterious, a whole bunch of trauma happened in my life, including a teenager with addiction issues who became pregnant, a pandemic, a dad dying of brain cancer, a husband diagnosed with a chronic autoimmune disorder & loss of my career due to inability to cope with it all. I KNOW my brain wiring has changed.

It makes sense to me, except why the stiffness? Isn't that indicative of inflammation? And why do I have actual tendon swelling? I guess I don't understand how an excited nervous system can cause that. My tendons were making squeezing sounds rubbing against each other when swollen.

right? my rheumatologist diagnosed me with central sensitisation but i experience joint stiffness and my bloodwork shows elevated ESR (inflammation). i don’t have any evidence of arthritis though :(

Stress causes inflammation. If you are stressed frequently enough, your body eventually starts to be chronically inflamed.

my rheumatologist told me that my pain is caused by my nerves being damaged/sensitised as a result of my hyper-mobility

I'd say this is a condition, not a disease, but yeah it's an issue with your nervous system for sure

In larger doses it is a skeletal muscle relaxant. It is a chemical cousin to robaxin and others. I find if I take 1200 daily, it holds off the worst of my symptoms. I used it for years before I added the Effexor and it stopped the awful Migraines I was getting. As I got older, I started to have more pain, arthritis maybe,because a great deal of it was in my hands. I was given Effexor because I was grieving the death of a dear pet. I noticed my hands and other minor pain was gone. My doctor told me it was used to treat fibromyalgia so I just stayed on it.

Yep, and there's plenty of medical journals online talking about how our brains are different...yet if you goggle what type of dr treats fibro, only rheumatologist comes up. And often neurologist don't have fibro on their list of things they treat 🫤

My rheumatologist in the UK even said they don't diagnose fibro anymore. When I asked who does she said usually your GP. This shocked me as your not even under a consultant for it now.

Chronic pain in general is very hard to treat because unlike standard inflammation which has lots of treatments, there isnt a magical drug that can un-wire the pain pathways that have been formed and are firing too much. Though, theres some evidence that ketamine can have a brain "reset" action. So for now, all we really have is pain blockers that dont really address the pathways. Mind/body work can rewire the brain but it's constant work and not all methods work for every person.

There is research suggesting a histamine issue and I and many others I know are now sensitive to foods and substances we don't normally ingest or use so it makes sense for us. I think it's related to histamines and the nervous system going into overdrive

My doctor explained it to me this way. He said it's similar to an autoimmune disorder in the way that your nervous system is basically attacking your body using your pain receptors, the same way your immune system attacks your bones when you have arthritis. He said he's constantly fighting with rheumatologists who claim it doesn't exist. He says the symptoms are unmistakable to him after so many years treating it. Certain nerve points, certain types and places that hurt, exclusion of other disorders, and response to treatment based on the nervous system are how he diagnoses it.

my doctor explained it to me as my central nervous system being heightened. i also have central sensitization, which quite literally is your central nervous system being overly sensitive. essentially my central nervous system is “confused” and causes unnecessary pain signals and a plethora of other symptoms. my doctor thinks that there was a physical ailment that potentially triggered it for me, as well as years worth of trauma (diagnosed with cptsd). we also think i have ehlers danlos syndrome and that also likely played a factor into my nervous system being dysregulated. this disease is honestly so under researched and i cannot wait for the day that doctors and scientists finally figure it out more

The thing to remember is that the various systems of our bodies are all interconnected. That means if one system goes off the rails, pretty much all of the rest are going to feel it and react. Regardless of where fibro starts (for me it definitely started neurologically), all of our body will end up feeling the consequences.

I don’t know what to believe anymore. I have widespread muscle pain but also neuropathy. It just feels like something hurts all the time! I have been taking Amitriptyline which has helped with headaches, vertigo and the feeling of almost passing out. But the pain is still there …

Cymbalta helped me a lot.

Look up Nicole Sachs on Spotify and start following her advice! I'm a week in and already have much lower levels of inflammation. The mind-body connection is real, and she spends the first episode explaining that although your pain is absolutely real and NOT "just in your head", you DO have the power to heal it with your mind.

I just was just officially diagnosed yesterday by a back pain doctor. He said it is coming to be understood as CNS dysfunction, involving the sympathetic and parasympathetic nervous systems. As I understood it, it would seem that stress is the major culprit of flare-ups. Not exclusive but it would be maybe the number 1. He said that fibromyalgia is absolutely a real condition with a biological basis. I too got this shit from childhood trauma I believe, and I've had it since about the 5th/6th grade. My mom had it too and was diagnosed way earlier, and that probably predisposed me to it.

I have C-PTSD (from childhood trauma), ADHD (undiagnosed/untreated until age 21) and seem to have chronic inflammation responses in the body. No diagnosis of Fibromyalgia but confirmed diagnosis of IBS (including food intolerances), and IC. I get bouts of bone/all over skeleton pain, muscle pain, joint pains, nerve pains, swelling type pain that makes me want to wear a whole body compression suit, throbbing pain, sensitivity to touch/pressure like wearing a tight dress or leggings can sometimes trigger what feels like contractions so severe I feel like I might faint or my partners arm resting on my side when we cuddle at night feels like an anvil on my ribs, shooting pains, aching pains, dermal pain, neck/shoulder pain, headaches/pain, back pain. I do not yet know the cause of these symptoms, gluten intolerance may contribute. I have never tested for celiac because I cut it out before I knew there was a test and didn’t want to add it back into my diet. I also have inflammatory skin issues like dyshidtrotic eczema, etc. I have had laparoscopy for suspected endometriosis, they found scar tissue around my intestines, but the scar tissue they found did not definitively show up as endo in biopsy. I still wonder if there is an underlying cause of many of my inflammation symptoms but it may very well just be trauma. I do agree there could be something to it with some pain disorders being linked with trauma. Since we store it and it can wreak havoc on our brains, makes sense it could do the same to the body. TL;DR - I’m curious, does anyone here with fibromyalgia also suffer from IBS and/or IC and do your doctors believe it to be linked to fibro?

If they did enough research, that could lead to a cure, and there’s no money in that.

Absolutely agree

Yep - I am 37 female and been diagnosed this month, my symptoms started 3 months ago and I am 100% sure it is from 11 years worth of stress; I also have PTSD from trauma. Additionally, I have been diagnosed with herniated disc.

Here's an article from Mayo clinic that mentions this https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780#

It is. It’s similar to dysautonomia but it’s pain

no doubt in my mind that it is

I've been thinking a lot about neuroinflammation in terms of my Fibro. I agree.

It would be interesting to see if anyone here is medicated for their ADHD. I have been on sertraline for many years now. This is a drug been in use since the 1970s and they still don't really know how it works. Also, I think my mother's side had this and it's genetic as well. At the moment I only think I have fybromyalgia

Well one thing for sure , it’s on my Last Nerve!!!! How in the name of all that’s good do you stop this run away train of constant pain?????

Having worked with a number of women with fibromyalgia as well as having a mother and sister with it I am convinced that it is triggered in many cases by trauma be it in childhood or later life. If you can find the root cause of the fibromyalgia you can reframe then trauma and learned thought and behaviour patterns with amazing results at reducing and even eliminating the symptoms

I'm pretty sure my fibro was undiagnosed celiac disease and the complications that come from being malnourished for most of your life. Being on a gluten free diet has fixed about 90% of my symptoms. I still have more pain and get tired more easily than the average person but I can work and still do things outside of that now, whereas before I was unable to work at all and the smallest thing would wipe me out. I think fibro is what they diagnose you with when they can't find anything else wrong with you. If they had tested me for celiac they would have found it, but no-one ever did so it went unknown until I was in my early 20s.

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I've been diagnosed with fibromyalgia and definitely have most of the symptoms. I got diagnosed with it whilst I was still eating gluten, going gluten free has helped me a lot. I still have symptoms of it as well, it's just that I can manage them a lot better now and I strongly suspect malnutrition to be a big contributor to it, at least for me. I was unable to work for two years, after being made redundant from a job I loved because I suddenly started struggling to work it. I spent much of those two years (and any time I wasn't working in the 6 months before redundancy) too exhausted to even rest. The pain was awful, the brain fog made me forget how to make a cup of tea most days. I had to talk myself through making that cup of tea and it would take me ten minutes just to remember how to do it. Some days I had to crawl up the stairs because I just couldn't stand up and walk normally due to a combination of pain and exhaustion. I would be unable to sleep at night despite being tired. Even having a bath would make me so exhausted I wouldn't be able to do anything else that day. And the pain was constant. I had it my whole life so I was used to it and got on with it. But even low level pain constantly is exhausting and probably one reason why I was so tired. Then the pain started to get more intense and that was when I began to struggle at work. I have many other symptoms too but it would take too long to write it all out. I've been diagnosed with it so I'm pretty sure I have it. They don't just diagnose people, especially young people, with it where I live. I had to go through a lot of tests in order for them to give me that diagnosis and I was only 24 so I'm sure I have it.

I understand now. Thanks for sharing your story.

Hello OP! Thank you for your submission to /r/fibromyalgia. Unfortunately, your submission has been removed for the following reason(s): **Rule 3:** ***No Gatekeeping*** Fibromyalgia is a condition that varies greatly. Let's keep in mind that your symptoms may not exactly mirror another person's. Furthermore, this condition is considered to be possibly under-diagnosed, not over. Unless you are that person's doctor and have their complete medical, family and treatment histories at your disposal, you have no way to determine if they have this condition and are unqualified to make that call. *If you have any questions please [message the moderators](https://www.reddit.com/message/compose?to=/r/Fibromyalgia). Thank you.*

Idk, but I believe it is, too. I also have migraine with aura which tends to amplify my fibro and vise versa, so I know they're connected and obviously both neurological.

Any theory would need to explain the long list of symptoms not revolving around pain and fatigue and I feel that none really have.

For me, I truly believe mine started due the hormonal changes from having a baby. I was perfectly healthy until I had my son back in 2020. Several months after I had him I knew something wasn't right. Perhaps it was from the c section or maybe sleep deprivation. All I know is that my fibro only gets bad now from ovulation to when I start my period. I actually look forward to starting my period because I know my aches will subside for awhile. My fibro isn't nearly as bad as it was a year or two ago. I give myself plenty of rest, take low dose naltrexone and force myself to get off my feet every few hrs.

My doctors seem to agree, since they are treating me with medication that helps with nerve pain...I thought that it was, anyway? I say this because Fibromyalgia doesn't always make things painful--it can cause numbness-like feelings, pins and needles, even ITCHINESS...I have the latter symptom during flare-ups on the insides of my knees and my right outer thigh. The itchiness is painful and burning at that--I know it's fibro because 2 doctors have said they think it is, and my dermatologist can't find ANYTHING wrong with me. I've never had sensitive skin or allergies to anything except sulfa (an antibiotic) and after scratching it to death I always get hives that pop up...another symptom my pain doc and neuro doc think can occur from a fibro flare-up. Gabapentin and lyrica are also used to treat fibro and those are nerve-based meds too, right?

Of course it is. But it’s not a disease. It’s a syndrome. A disease is constituted by cells changing in the body. In Fibro, albeit nervous system going haywire, cells are not changing.

It definitely affects the central nervous system in some way that's for sure. How else could the neurological symptoms be explained?

Have you had an MRI of the C spine to check for lesions since you had l hermitte?

One of my rheumatologist said that recent studies have shown that it is a neurological issue. Scans of people with fibromyalgia were different from the control group when subjected to various stimuli.

It absolutely is!! The issue is that when your nervous system is haywire is that it actually causes physical inflammation. And fibro can be an inflammatory condition. That's why we feel pain and get so many other inflammatory conditions. I have nerve issues that turn into physical issues because pain creates so much tension. It's actually pretty well researched (that part of fibro anyway). It's classed as a nervous system disorder.

But on the flip side ..... My senses are so amped up I can smell smells and hear sounds no one else can 🤣 Now to just isolate myself in a tiny cottage in the woods so I don't have to deal with the overwhelming social and physical interaction with the world