Has anyone come across information regarding the cause of fibro besides being autoimmune? I saw some people believe it is caused by small bacteria. If true then it is no wonder that treatment are so ineffective. Similar thinking (along the lines of fibro NOT being autoimmune) on the orignal colloidal silver website. On the naturalnews website some people believe it to start with the tyroid. Comments?
I have wondered if Fibro comes out with trauma as well, I am hearing a lot of people mention injuries they sustained or went through with surgeries, and I know I had major trauma to my foot during an ankle fusion, ended up with blood clots in my lungs and a saddle that almost took my life, since then my recovery has been very slow and Fibro has come out like a vengeance. I was diagnosed 2-3 yrs ago with fibro but it never really 'flared' I am now in my worst flare I ever had of this. I'm curious as to how it just starts? at first we thought I had restless leg syndrome which Maybe I do but I'm thinking it's the fibro more after researching and talking to others on this board.
I went to a rheumy that specializes in fibro to make sure I didn't have any of the other six things that mimic fibro. All test were normal, I have fibro and he said it was caused by stress. I had just gone through a stressful time with my dad dying and sister problems.
Wow
I am amased at how similar fibro symptoms are to what I experienced and people on this site experienced. My fibro also started suddenly without any warning after an extremely stressful time. Never connected the dots until I read the replies. I still wonder however if there is not also some kind of bug involved in at least some of the fibro cases. Some experts believe the body is not stupid and will never attack itself.
Thanks for the reply. I never thought about stress - I also had major stress before the fibro hit. I still wonder about some kind of germ or bacteria as some sites suggest.
No one knows. You can find anything you want to find on the web from a to z. I don't know if what everyone calls fibro is the same thing or not. Maybe some people have an unknown virus. Or maybe it is in some people's heads. As in some crazy lady at work that came up to me after a suicide prevention class and asked me if wanted to kill myself. She said I just looked down all the time. I said, no, I have fibromyalgia. She responded with oh, I have that too. I didn't believe her for one sec.
However, I don't believe it is a virus for me. Whatever I have, I believe I was born with. Everyone goes through trauma. No one has a perfect life. Ask the guy who sits next you on the bus and I'm sure something stressful or tragic has happened to him, yet the odds are he doesn't have fibro. I used to think mine hit me after a car wreck, but I started thinking about it hard and I know it didn't just hit me. The symptoms increased and I flared, but I know I had trouble getting to school 5 days a week all my life. I always have bruises for no reason. I would get tired playing tennis when the other girls didn't. I was tired all the time and never wanted to go anywhere. And the longer I thought the earlier in life I can go, back to the story my mom would tell me that I got sick about 3 days after I was born. They took me to the doc and he said I couldn't take the heat of the hot Aug and my parents should keep me in AC. It was 1975 and not many people had central air, but we did. I didn't go outside and play in the summer or I would overheat. I even got an Atari when it came out to keep me busy inside because I couldn't ride a bike very long like the other kids. Then a few weeks ago, a story comes out about how people with fibro can't regulate their body temp. I went to the doc on Wed and my temp was 97.9. I have never been at a normal temp. My mom would consider 98.6 on me a slight fever because I was always low. I have no story to tell of me having any virus other than chicken poxes.
My son is 16 and was dx with fibro at 14. I started seeing the signs somewhere at 13. He's never had any virus or been really bad sick. He's broke his arm. That is all. But his hands and feet are always cold too. He gets cold like I do. Then I started thinking about him, and I remember when he was born that we couldn't put socks on his feet. They would sweat so bad his socks would be soaking wet. We asked the doc and he just said not to put socks on him. He went about a year without socks or shoes for this issue.
So maybe I don't have the same kind of "fibro" as everyone else, but a lot of people with fibro can't regulate their temp and I'm not sure it comes on all of a sudden. It got worse all of a sudden. I think it has always been there in some form or fashion.
KJ
So sorry to hear about your son also having the dreaded fibro. I again was never sick, I got ebstein barr virus and only years after the virus the fibro, lupus like symptoms hit me like a ton of bricks. All Dr tests negative. Lately I also struggle to regulate temperature and read on the natural news website that many people with fibro also have tyroid issues which apparently cause the temp issues. If fibro is caused by a virus, we should all be treated with antibiotics or something. There is a very interesting group on the net called the Marshall protocol. They firmly believe a very small bacteria is at the root of fibro. I also like you would suddenly have a slight fever, otherwise having a low body temp. It is amazing how similar these fibro symtomps are with everybody. Would not be surprised if all the gmo foods could perhaps play a role as well. It is very difficult to try and get relief if the doctors have no clue what causes fibro. God bless
Kelly
I also had epstein barr years back, also had my share of trauma and unexplained symptoms. I suffer a lot from unexplained nausea which started a few years before the fibro hit. I was amased to read on this site of people also having fibro and bouts of nausea. Yes, like you say, it is only God's grace that can help one carry on day after day and month after month with these dreadful symptoms. I also get this brain fog and I also wonder if a virus or like some groups on the net believe, a bacteria that sits behind fibro. My point is - if this is true, then most of us are getting totally wrong medications. Thanks for sharing your story
There are different theories about the cause of fibro, but none have been proven. If you don't know the cause, then how can you find a cure? In the mean time focusing on effective treatments is most important.
Evolution, stress and fibromyalgia
Adapted from: Lyon P, Cohen M, Quintner J. An evolutionary stress-response hypothesis for Chronic Widespread Pain (Fibromyalgia Syndrome). Pain Med 2011; 12: 1167-1178.
Despite affecting huge numbers worldwide and being researched extensively over 25 years, fibromyalgia syndrome (FMS) remains a problematic construct, for clinicians and patients alike. Characterised by persistent widespread pain and tenderness disproportionate to demonstrable tissue damage, of which there may be none, the syndrome often includes, sleep disturbance, fatigue, ‘irritable bowel,’ cognitive and affective changes, and, less frequently, skin disorders. Without a cogent model of pathogenesis for this complex syndrome, effective treatment remains elusive.
An evolutionary approach provides insight. Several clinical features of FMS accord with “sickness behavior,” found widely in the animal kingdom, which is the observable manifestation of physiological processes working to restore proper functioning. Sickness behavior is part of the organism’s response to some sort of stressor (threat, disturbance), which may be perceived via innate immunity or cognitively. The building blocks of the human stress response (i.e., cytokines, neurotransmitters, hormones) are evolutionarily ancient.
The systems that underlie the human stress response (SR) are multiple, co-modulatory and co-regulatory. Almost from the moment a SR is activated, countervailing processes also activate, to ensure that the dramatic molecular events marshaled to save the animal don’t themselves do damage. This is because many molecular actors involved in SRs are ‘double-edged,’ and can have negative as well as positive effects on organism functioning. The response to stress thus is designed to engage, repair, and stop (resolve).
When an SR is prolonged in any organism, for whatever reason, profound changes occur in functioning and behaviour. Chronic SR activation in humans is associated with some of the most medically important diseases in the developed world, including cardio-vascular disease, type 2 diabetes, and metabolic syndrome.
One of the Janus-faced molecules involved in vertebrate SRs and associated with a wide variety of chronic human diseases is substance p (SP), a deeply conserved neuropeptide also found in insects and molluscs. In humans, SP operates in both the central and peripheral nervous systems. With its preferred receptor neurokinin-l (NK1R), SP is involved in a staggering range of defensive mechanisms, including cytokine release, cell manufacture and migration to sites of injury, mast cell granulation, edema, vomiting, gut contraction, cell death, and aversive reinforcement learning. Its importance to human functioning is reflected in ontogeny: SP is one of the first neurotransmitters to appear in foetal development, before other SR actors, including corticotropin-releasing hormone, adrenaline, noradrenaline, dopamine, and serotonin.
The relevance of SP for understanding FMS is three-fold. First, elevated SP in cerebral spinal fluid is the most reliable biomarker of FMS. Patients typically have SP levels 2-3 times those of healthy controls. Second, SP is highly correlated with the common co-morbidities of FMS, including depression, sleep disturbance, irritable bowel and psoriatic skin disorders. Third, recent research shows that SP is necessary for the development of central sensitization in the spinal cord’s dorsal horn. Central sensitization is widely thought to be the most promising explanation of how chronic pain is induced.
From this perspective, FMS can be seen as a clinical outcome of prolonged activation, or dysregulation of a complex, evolutionarily conserved system designed to defend the organism against threat. There are several explanatory benefits to such a view.
First, this perspective explains why a chronically activated or unresolved SR might manifest as labile widespread pain in association with other co-morbidities. Second, it explains the clinical overlap of FMS with post-traumatic stress disorder, which is also associated with elevated CSF-SP. Third, because SR systems are among the most genetically and phenotypically variable systems in biology, this perspective may help to explain the great differences between individuals in clinical presentation. SR systems in mammals are highly susceptible to modification in early development, producing different stress reactivity profiles, so childhood exposures to stressors, including serious disease or injury, may be relevant to clinical presentation.
The SP/SR hypothesis may help to explain why SP and NK1R antagonists did not fulfill their promise as treatments for FMS. SP/NK1R participates in many defensive systems important to whole-organism functioning, not just chronic pain, and they work in combination with many other molecules. Finally, the hypothesis might also help to explain why certain holistic, non-pharmacologic therapies (e.g., patient education, cognitive-behavioural therapy, mindfulness/relaxation) appear to help a substantial proportion of patients, particularly when combined with exercise. It takes a system to treat a system.
Pamela Lyon, Visiting Research Fellow, Social Epidemiology and Evaluation Research Group, University of South Australia; Milton Cohen, Specialist Pain Medicine Physician and Rheumatologist, St Vincent’s Campus, NSW; John Quintner, Consultant Physician in Rheumatology and Pain Medicine, Pain Medicine Unit, Fremantle Hospital.
I also heard fibro is brought on by previous physical trauma like car accident,physical injury .this is the case for me with having flare ups that are killers. Hugs to all catherine
I thought I was healthy... as one can be working 2 jobs with 3 kids at home. (single Mom). I was not taking care of myself... just eating out of a box and drinking all kinds of caffeine. Getting little to no sleep. Then I found out I was pregnant. I didn't think it was possible because we had tried several years earlier when we were really "together" and had several miscarriages. Once I found out I was pregnant I had to quit my full time job. It was really my second job because my first job had the insurance. Both jobs were very physical and I was not one to ask for help so I'm sure I did more damage than good to my body. I was 39 when I found out I was pregnant. I was worried about providing for my girls, being responsible for yet another child, how much more tired I was during this pregnancy, etc. To top it off, my oldest child was pregnant at the same time. I ended up taking early maternity leave from my primary job. This surprise baby ended up having complications during delivery and I ended up having a c-section. She was almost 10 lbs!! (I had delivered 3 times naturally, previously.) When I went back to work I left my infant with my oldest, pregnant daughter. She delivered 2 months after I did. The poor first time Mama came home to be with not only her son, but my fussy daughter too. I remember her calling me at work in tears. Both babies were crying and so was she. I was a basket case and trying not to show it. Within a year, if not less, I was so exhausted and in pain I couldn't stand it. I didn't understand what was going on with me. I had been working a physical job for over 6 years and was in pretty decent shape especially for my age that I could not understand why I felt like I was falling apart! I had heard of Fibromyalgia and dismissed it. I didn't understand it. I saw a Dr who put me on mega doses of aspirin. That didn't help. All I wanted to do was be able to work my *** off for my children. (I was tired of being Mom and Dad, but it was my duty). I saw another Dr. who put me on pain meds, muscle relaxers, Cymbalta (samples... after all I was only working part time). I thought he was GREAT! Little did I know that all those meds would catch up with me.
Anyway, yes, I believe Fibro can be started from too much stress. It wouldn't surprise me if it was a "bug" also - especially while we are so stressed out and down. I have since had to quit my job with the insurance. It makes it impossible to get any kind of disability assistance. I would love to be able to work. Especially at the job I had. I am not reliable enough to get another job. Sometimes i have to fight just to get my youngest up and ready for school.
Showering can be quite the ordeal. I have to sit back down and rest afterwards. So about every other day I skip the shower and since I don't leave the house unless I have to, just stay in the same clothes even. Making any kind of plans is impossible. Just this weekend I wanted to go to a friend's son's viewing and funeral. That didn't happen. I had heart palpitations that wore me out the day of the funeral.
Sorry, this sounds like a sob story. I know each and every one of you has your own story. It feels better to get it out. Sometimes I feel like my family just thinks I am over-dramatizing everything. He says he understands but tells me other times that I'm not the only one who has it. ??? I know he hurts too.
Ok, I'm done complaining. The point is I think that when we are stressed out from years of great stress, this can come crashing down on us.
Thanks for listening!
Kabaho
Oh do not feel bad I just wrote one for 20 mins and its gone !!
here is just portion of explanation that WebMd gives...
'Investigators are constantly looking at various explanations for the occurrence of fibromyalgia. Some, for example, are exploring hormonal disturbances and chemical imbalances that affect nerve signaling. Other experts believe fibromyalgia with its deep muscle pain is linked to stress, illness, or trauma. Still others think there is a hereditary cause or say there is no explanation at all. But while there is no clear consensus about what causes fibromyalgia, most researchers believe fibromyalgia results not from a single event but from a combination of many physical and emotional stressors.'
Now this site WebMD, goes on to speculate about other causes below or tie into theories such as stress, insomnia etc. Bottom line seems to be that they are not sure as of yet...but at least they are working on it!
http://www.webmd.com/fibromyalgia/guide/fibromyalgia-causes here is link which has a lot more information.
If you just do a search for cause of fibromyalgia I did get a full page of sites.
Actually it is not autoimmune disease. most sites do not call it disease but ailment or illness.
I also included wikipedia about epstein barr virus...which is not mono...it can bring on mono as well as other health problems but it itself is not mono. I been told i have had mono over 7 times now...not once was epstein barr virus positive as well.
http://en.wikipedia.org/wiki/Epstein%E2%80%93B
Lastly here is interesting site about how Scientist have pinpointed physical cause of fibromyalgia pain and it has a lot of other information about it that is not normally found such as best blogs on fibro. This site looks reputable but i have not fully checked it out.
http://www.healthline.com/health-news/aging-scientists-find-physica...
Kelly , That is one of my worst symptoms... the nausea.. comes and goes as it wants to but hits me almost every day. .. I feel like I have the worst flu I have ever had and totally drained. THis is one symptom I wish I could get rid of.. Hugs LIsa
Rachael, I really love your positive attitude. Thanks for sharing it with us. I am learning that I need to accept this diagnosis and move forward and enjoy my life. Some days I don't much feel like that .. I do know that it is the best thing that I can do for myself. You have helped me to realize that and I really want to Thank you Hugs Lisa
Hi LF,
I'm not sure what the exact cause could be, all I know is, for myself, I had no fibro symptoms before I had a severe nervous breakdown and developed an anxiety disorder, my breakdown was bad, suffered awful emotional trauma, with help and medication I gradually began a journey of recovery from that, but then developed fibro symptoms.
I certainly believe there is a link with fibro to stress, emotional trauma, anxiety and depression, because I was fine before I became mentally unwell.
Lucy xx
I looked and do not see a reply from you. Hopefully others can say if they do see one from you other than this one.
Frustrating...so sorry!
So many people here seem to have experience emotional stress & physical trauma, pre fibro.
I have, but I also almost died in hospital of an unknown illness. I was in hospital for 16 days… But did not get a diagnosis until six months later…Epstein Barr virus. Makes me think about the viral theory?
I've read that fibromyalgia happens when there isn't enough of our body's natural ability to produce pain relief, and so the nerves get mixed signals and tend to become overactive, causing all sorts of pain, burning sensations, flare ups, you name it. I cannot find the article that I read this from about a year ago. There are many different reasons as to where it begins, such as stress, an injury, other ailments, etc.