What is THE Cause of Fibromyalgia & Chronic Fatigue Syndrome?

I’ve spent some time trying to figure out when this must have started for me and I can think of a few things. My stress levels went way up sometime in high school and didn’t go back down again until years later when I got on medication. It was around the same time in high school that I also ended up with pneumonia so severe that I was in an oxygen tent at the hospital for a week. I have not felt truly healthy since then. Maybe it was a combination of stress and severe illness? Maybe that was enough to trigger the auto-immune disorder that runs in my family? I honestly don’t know. It was probably a combination of all sorts of things that just added up to one over-stressed, over-taxed system that fights everything now, including itself.

I keep reading new developments with interest. Hopefully, fibro will become more understood and we’ll get better diagnosis and treatment.

I wonder at times how many people have wondered what causes these illnesses. I know I think about it a lot. My main illness onset was after a severe virus the entire family went through, unfortunately I began a journey with post viral illness and I am still battling this seven years later. I have gone over it again and again. Was it the virus I had, was it the quinoline antibiotics and prednisone I took after the virus to combat a double ear and sinus infection, was I just prone to this genetically, or possibly exposed to something toxic? The list of wonders goes on and on, as I still feel there isn’t proper attention, funding and research being devoted to this illness. My hopes and prayers are for more funding, more research more answers, more compassion and less suffering for everyone who carries the burden of this wretched illness

I’m sure I do not know – I know for me It was a combination of the Severe injuries I suffered as a break dancer – and severe sleep deprivation for 5 years I slept between 1 1/2 – 2 hrs a day because I worked nights and took care of my infant baby for 5 years until he went to school full time – COMMON — I have noticed that Many of the Female Fibro Sufferers and I mean every person I asked Has had some form of Gynological problem – pre cancer cells – Cancer – Hysterectomy etc… I do NOT say that is a cause maybe a symptom?? I do not know however – We can find out By each Female who reads this commenting Yes or NO – if they have had a Gynological issue – and I mean something other than a yeast infection or something common – I never had Any problems that way I never Had a yeast infection or any Gyno problem Until I had Fibro (even tho I did not know I had Fibro at the time) I knew something was wrong but Fibro was practically unheard of 20+ years ago…..

I went to a different family doctor during the holidays when I was sick because my regular family doctor was on vacation. He was looking over my chart and started asking questions about various illnesses. I told him I was diagnosed with Fibromyalgia in June of last year and then he said “so they don’t know what is wrong with you” . . . hmmmmm. Guess I should have thought to ask him what he meant by that!!!

But, to answer the question, I think mine was brought on from having breast cancer, a lot of stress, and some extra pounds.

Mine was brought on by Epstein Barr virus(that re-activated) that is always elevated in my blood work (like i still have mono). I had mono when I was a teenager. About 10 years ago I felt flu-like, weird muscle/joint pain, doctor after doctor would not give me an official diagnosis. Lupus, MS, Arthritis was brought up but came out negative. Recently a neurologist specializing in Neuro-muscular disorders diagnosed me with Chronic Fatigue Syndrome/Fibromyalgia. He is positive that the Epstein Barr caused it. No cure though, but now I am on many supplements, etc. from Dr. Teitalbaum (www.endfatigue.com) and they have helped tremendously along with recently getting a hysterectomy.

I think alot of different things contributed to my fm+cfs..precocious puberty from aged6,spiked with a drug+almost raped,death of my boyfriend,family problems,my daughter was abused whilst in her fathers care at2years of age..the final straw was a serious case of chickenpox aged 28,I’d never been so ill in my life!I’ve always had aches+pains since childhood-the gp said growing pains-so just carried on. After the pox,tho,I just became increasingly sore,no energy/exhausted,depressed,on bad days I couldn’t move.. I had a routine blood test+my rheumatoid factor was up,so they thought it was rheumatoid arthritis..following a trip to rheumatologist 2years later,fibromyalgia+chronic fatigue syndrome were the diagnoses’

I have no idea what caused my fibro but. after talking to a friend, I realized that I may have had it since childhood. When I was a kid I had a lot of pain in my legs that my mom would tell me was just “growing pains”. Now I wonder if it was fibro the whole time. I did have some traumatic things happen has a child that I blocked out for 20 years or so. Maybe that was a factor? I had my fibro under control for the first 10 years after diagnosis, until I gave birth to my third child last May. Since then, the pain is constant and very severe. Still trying to find a treatment plan that works.

I really have no idea what causes my fibro. After reading some of the other post here it did make me think. I always had proplems with my periods and had a complete hysterectomy at age 27. I had phnemonia two years in a row about a year before I was diagnosed. I had bronchitus several times. From the time I was a teenager I had a poor immune system. Who knows what caused it…put I pray they find some relief for us soon.

I also had leg pain when I was a child, then had Mono when I was 16. I had sleep problems and stress for several years and have ruptured disks in my neck, mid & low back. I also have thyroid problems and without Lithyronine I cannot function at all. I also take Cymbalta, Levothyroxine and Trazodone (so I can sleep). I think I also have adrenal gland and liver issues. I hope someone can find the reason and a treatment that works for this awful disease.

I think or my former rheumatologist (not sure I spelled that right) thinks it was caused by rheumatoid arthritis but I trace it back to a case of Mono when I was 16 and then I had it again in 2007 some 30 years later and I just kept working because I was moving to southern California and my oldest was leaving for college soon just as we were moving and my daughter got married all in a 4 month period. It has been pure hell since! I good days and bad days. I am trying to work as a preschool teacher after taking a year off after teaching 19 years, but I am going to stop in June. I have cut my day to 6 hrs, but by Friday I am so fatigued. The weekend is spent resting and trying to maintain a house and yard full of plants. We bought it 7 years ago because of all the trees and plants, but without a gardener or a husband who will do more than mow the grass it is so hard to keep up so the “neighborhood association” doesn’t leave you “love Notes” as I call them. Life is hard my husband lost his job 3 years ago and is a contract consultant and we just paid for 2 sons to go to college so financially we are so strained. It keeps my fibro going…..so hard to just turn it over to God but I am trying!!!!

My whole life I have always been sensitive; probably had something to do with being born an artist. I was always hyper-sensitive to the effects of prescription drugs, strong perfumes, fluorescent lighting, alcohol etc. I also suffered from migraines as a child, and as an adult. It seems like my immune system has always been very hyper-responsive to my surroundings/environment. If it didn’t like something it certainly let me know. In fact, when I did get sick when I was a kid it was brief; cuts, bruises, infections/viruses always healed very quickly.

I became ill with CFS/ME when I was exercising aerobically and drinking sodas containing aspartame. At first, I thought I just had a virus or infection because that is what it felt like; sore throat, headache, nausea, chills; worst flu of my life, felt like I was at death’s door. I became quite anxious, especially when my flu-like symptoms wouldn’t go away (the flu for life, this couldn’t be). The doctor prescribed antibiotics which only made me sicker. Any type of activity only exacerbated my flu-like symptoms; everything I did to try to get better, only made me sicker.

The one thing I think the medical community should consider is that not all illnesses are caused by an immune system that can’t defeat an invader. We are not all in need of constant immune stimulation, via vaccinations, exercise etc. Illnesses caused by an immune system in overdrive, autoimmune illnesses (which I believe “my” CFS/ME to be) can be just as devastating to the sufferer as illnesses caused in those who have poor-immune function. We are not all immune-suppressed. Start looking at CFS/ME as an illness possibly caused by a hyped-up immune system.

Another thing I think is important for the medical community to do, is to find a way to separate those who symptoms are caused by a poor-functioning immune response (subject to illnesses like cancer, HIV, diabetes etc) from those who’s symptoms are caused by a hyperactive immune response (subject to illnesses like lupus, RA, MS etc). There’s no sense trying to find answers for the cause/cure of ME/CFS when people seem to be suffering from completely different/opposite conditions. The people who improve with exercise do not have the same illness as I do.

“In order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria.”

http://www.cfids-cab.org/MESA/ccpc.html

I believe you must look for both a cause (underlying) and a trigger. From my research I totally accept there is a genetic tendency (ie weakness that later needs to be exploited and not direct heriditary). I then believe the common denominator underlying these conditions is environmental, particularly chemical and heavy metal toxicity. Don’t dismiss this until you google symptoms and sources of this toxicity. This is the only explanation that accounts for all the other theories possibly underlying fatigue syndromes, ie hormone disruption, candida, etc, as they are all related to and/or made worse by toxicity. Then as toxins accumulate (through the environment and the inherited inability to detox them properly) a trigger will most likely (although not necessarily) occur to start the recognizable start of a condition (which many recognise they had to some degree from a much earlier age), such as stress, trauma, illness, vaccine (more toxins), medication (more toxins) etc. This theory is proving true in my case, as I slowly detox I am constantly getting better

I could list several “casual factors” that I believe exacerbated my Fibromyalgia, but I really believe they r inconsequential.The simple truth is, millions of people have dealt with the same illnesses and/or traumas as me, & they don’t all have Fibro, so these cannot be the causes. I was diagnosed in 2009, but soon realized that Fibro has ALWAYS been a part of my life.I have always just been “overly sensitive”. The CNS is most certainly involved in Fibro, & the way the brain hears it.I often describe Fibro as widespread chronic pain & pain amplification.Most ppl understand the former but don’t understand the latter.I explain that it’s like my CNS is set to high volume and my brain has super sensitive hearing, the lightest touch can feel like a violent jolt. What causes Fibro is a far less important question than how Fibro affects an individual. I don’t care why I have this, I care how it affects me. There is also talk about primary and secondary Fibro, which I agree with in part. I clearly have primary Fibro, but secondary Fibro is, in my opinion, in most cases latent primary Fibro. If your CNS stays in a hightened state (because of multiple traumas or long periods of high stress) it can stay that way, but that does not happen to every person who has multiple traumas or those who endure long periods of high stress, there is a predisposition. If you can learn to listen to your body, you can be more successful at manageing your Fibro. The long in the short of it is: Fibro makes you more sensitive to everything. While you may not have true allergies, your body responds as if it does, this is why so many of us have round after round of tests and blood work only to find out we are healthy. Researchers should focus more on how it affects us, not why we have it, until then western medicine will serve to do little more than put a band-aid on gaping wound.

My daughter has FM/CFS and is one of the few people that knows the absolute cause of her disease. She was diagnosed with Ehlers Danlos Syndrome hypermobile type last summer. This is a connective tissue disorder of the ligaments. Her ligaments do not support her joints so the muscles tendons nerves etc are trying to do that job as well as their own. I have seen some reports from specialists in this area that say that 100% of their EDS patients also have FM. I makes me wonder how many people do not realize they have this other condition as well.

Let’s see, it’s a lot like other people’s descriptions:
appendicitis at 13
mono at 16
kicked out of home at 18, homeless with an abusive boyfriend
raped
Married a good guy and life was calm and happy for a while.
IBS, lactose intolerance, and RLS started.
Hurt my back and got a mono-like illness for a month following.
Got shingles and then post herpetic neuralgia
Gall bladder removed.
cysts in my sinus, surgically removed, cysts in my breasts
fight with mother, disowned, lost a beloved cat and my sweet mother-in-law died, all in 9 months.
That’s when the Fibro became full blown.
Depression, anxiety, Raynauds.
Boy I’m a mess!!
LOL

I had mono at age 10, but seemed to always have been ‘overly sensitive’. Can’t really say what is the cause, but I notice many others who also had mono.

When reading all the comments it strikes me that all the things we look at as possible causes are the same things that many, many other people experience and they didn’t develop CFS or FM from their experiences.

I also had mono as a teen but so do a lot of other folks. When I was hit in 1978 with all the symptoms of CFS and FM I felt very ill with viral type symptoms. It came on suddenly and never left. It’s all grown progressively worse over the years. I still think it’s a viral or bacterial infection that’s not been discovered.

I believe my fibromyalgia and CFS are directly a result of several factors: 1) being a high achiever in a demanding high stress profession for 25+ years; 2) powerfully disrupting & emotionally distressing personal life situations with spouse and son; 3) being diagnosed with breast cancer; 4) and being an INTP/ Type 4 personality probably contributes as well.

I miss the me that once was.

As I read through these comments, I found a few similarities. I have struggled with IBS since childhood. My first symptoms of extreme fatigue occurred after the birth of my daugter fifteen years ago. I was told that was normal for new mothers. My second child slept better, so I felt more energetic..for a few years…even after my third child was born. Had an emotional trauma in 2005 that started me on a fast downhill slide: horrible exhaustion, severe migraines (some worse than LABOR!), worsening IBS, and pain all over. The only thing that came out positive was an Epstien-Barr titer, the same virus as mono. Certain things made EVERYTHING worse: certain spring water, tap water, chocolate, shrimp, red wine, tea, sugar….for a while, I was even afraid to eat, because it seemed that eating could make it worse. I am on the mend, taking zinc and alpha lipoic acid. I still get tired, but not nearly as bad, and usually only after I have worked hard. I learned about those supplements in a woman’s magazine, of all places. I also avoid tea, soda, and wheat, and drink only lactose-free milk and reverse osmosis water. Please do not give up just because doctors cannot figure it out.

It CAN get better!

I have had Fibro for awhile but what gets me is the fevers still. My normal body temp is 96.7 so when it gets up to 99.7 I treat it as having a 101.7, It is just like having mono all the time… Which I didn’t get until I was 40. They thought I had aids.. In which I was saying how ? got to the clinic and they laughed and said no you just have mono was I relieved.. I got so bad now that I draw disability, went from working 3 jobs single parent to no job. I’m so glad my children are out of the house now just because of the Fibro fog brain ..constant pain.. You get one thing under control or you think you do… And the cycle starts.. People ask what you have then say oh I want to scream and say I wouldnt wish this on my worse enemy..just because of people like you who judge before you know…people even doctors who don’t study this disease. This disease is real and hurts not just yourself but your families.. Please keep fighting for a cure….

Virus infections., After looking at various research I believe that Viruses are a trigger and they need to be there along with environmental factors (stress, trauma, illness, accidents, sleep deprivation etc.. ergo something that lowers the ability of the immune system to fight viruses.) and a genetic factor. I Think there are similarities between FMS, ME and MS and that the causes are similar. I think Viruses play a key role in the onset of Fibro and recent virus/retrovirus studies seem to indicate that they play a role.

No one knows how Fibro came upon me but I do know this much…I have always battled pains & aches. I have many food allergies. As a kid, I remember being very intolerant to pain. My brothers and I would play & I’d end up crying- not bc I wanted attention but bc of the pain. My pain became worse after becoming a teacher, stil no real diagnosis. Every doctor I saw thought I was just stressed. I went through a year of becoming dehydrated and visiting the ER until I was diagnosed with Endomitriosis & Interstitial Cystitis. Then, after miscarriages I finally had my daughter. I was 27.Although at the time, I was just happy to be pregnant, the pregnancy was very difficult. My uterus didn’t stretch, this caused cramps. I had to be put on a hormone. I began having contractions at 7 mos. My daughter was born a month early, but was completely healthy. My delivery was almost fatal & the nurses treated me like a hypochondriac when I complained about the pain. Due to the IC I had to be straight cathed when I had to pee. The delivery brought my pain to a whole new level. Between the pain & stress from my maternity leave the pain never stopped. I finally got a diagnosis & have been trying to find a pain management plan that works for three years. I believe I always had Fibro, not growing pains. My mom was diagnosed 10 yrs ago & on her way home from the dr when she was diagnosed she told me she thought I had it too. I was only 20. It took almost 8 yrs to be diagnosed correctly bc I was so young.

Rachael has come to the conclusion that there are two different groups of people with slightly differing symptoms, lumped together under the one heading of FMS, CFS and ME, and that one group has a suppressed immune system and the other, an overactive one. The treatment therefore would be different for each group.
I have reached the same conclusion, albeit by studying the endocrine system rather than the immune system. I have come to the belief however, that both groups are part of the same disease process and that the first stage (suppressed immune system) is eventually followed by the second stage (overactive immune system). I believe this disease process is caused by a gradual failure of the HPA axis, resulting in a loss of the ability to produce adequate cortisol. High levels of cortisol result in a suppressed immune system (part of the fight or flight response) and so, I believe, low levels of cortisol would result in an overactive immune system which can eventually cause autoimmune disease.
This failure of the HPA axis, I believe, is caused by extreme stress and fear in early life which keeps the sympathetic nervous system switched on, a by-product of which is a disordered sleep caused by alpha wave intrusions.
The studies that show exercise to be effective in these disorders, I believe, only reflect the first stage of this process and not the second stage where exercise only causes more damage.

Tricia: said: ‘Rachael has come to the conclusion that there are two different groups of people with slightly differing symptoms, lumped together under the one heading of FMS, CFS and ME, and that one group has a suppressed immune system and the other, an overactive one. The treatment therefore would be different for each group.”
*********************
Exactly, Tricia! I actually think that in my own case, that my body is over-performing (ME), while I’m sure for others their symptoms are caused by an immune system that is under-performing and in need of a boost/stimulation, exercise etc. Therefore, the treatment would be different for each group (one to boost immunity; the other to suppress immunity).

Is it an infection or a reaction? A strong and weak immune system can produce the similar symptoms. Is it is an infection that your body can’t defeat and you become weak and frail, or is your body over-reacting to everything; sending out an immune response that is too strong causing inflammation, irritable bowel, pain, flu-like symptoms etc?

A strong immune response can make you feel just as bad as a weak immune response; they are totally opposite problems, but produce the same type of symptoms (fatigue being present in both conditions). People who are experiencing an over-response of the immune system feel just as sick (eg autoimmune diseases, allergies, anaphylaxis, anxiety), but don’t look as sick because their problem is not caused by a suppressed, poor-functioning immune system (eg cancer, diabetes, depression), but one that is performing too well. In an ironic kind of way, people with ME are actually too healthy.

My illness followed the classic thoughts on Fibro: an extended time of extreme stress and exhaustion followed by a serious illness. I know exactly when I became symptomatic.
I do think there is something being overlooked, though recent neurological studies seem to be bringing us closer to understanding the mechanics of the disease.

Honestly, I’m tired of trying to figure this out. Looking back at my own life, I’m 55, is much too much to consider. There’s either too many things that have happened to me that could be the source of my fibro, or it’s none of them. My guess is that the more the medical world understands the fine workings of the chemicals in our bodies, plus how everything in our bodies really fits together, the closer we’ll get to an answer.

Hi Everyone, you’re all so intelligent and we are very lucky to be here altogether and brainstorming for causes. Stress is in everyone’s life these days and it causes a worsening of ANY disease,so we can’t really identify it as a cause. I’m 63 now and have been fighting FMS since 1988… it was triggered by Lyme disease that wasn’t correctly treated for 5 years. However, after removing all the stresses I could from my life, having a very loving and supportive family, eating balanced, never smoking or being overweight, taking all kinds of supplements, doing yoga, prayer and meditation…..I still have ALL the same FMS symptoms as 22 years ago! My bloodwork always turns out excellent and all doctors seem to say that all examinations show that I’m healthy. Blood pressure gets elevated when I’m experiencing a high level of pain or emotional stress. All Lyme tests are negative. I listen to my body and take medications as needed. Medications help, but never take away the symptoms. Praying for all of us!

Have had FMS sympoms all of my life. The pain in my legs as a tottler. The migraine heaches. Diagnosed in 1988. Contracted Lyme in 2000 while camping in the north east. Took ten years to find the Lyme. Have Ehlers Danlos, osteopina and epstein Barr. I could work until the Lyme got into my nervous systom. I think my sympothetic nervous system runs 24/7.I don’t look sick. have been treated poorly by many doctors. I don’t have pain in my skin and enjoy a deep massage so maybe it is M.E.? Help comes from herbal Kratom and soma/Nucynta and hot bathes. Sleep is a joke. if I try a soma in the middle of the night I experience sleep apnea. Have has 2 sleep studies, both show I never get to stage delta where the body relaxes and repairs. Wheat allergy and more? I also use micro doses of hydrocordisone. No one kows just how awfull the situation is. Friends abandon you as does your spouse as they think you are making this up. I understand how one would draw these conclusions. I think that deep sleep is our biggest help..

I’d love to attend this conference – “CFS Diagnosis: Lumper or Splitter”

“Dr. Natelson is a neurologist with a long history of research expertise in Chronic Fatigue Syndrome and Fibromyalgia. He is specifically looking at the brain as one of the causes of these illnesses and will challenge the practice of frequently “lumping” these patients into one illness category due to psychological factors. He will present over a decade of research proving that CFS and FM are likely separate and discrete illnesses. In contrast to the “lumpers,” he takes the “splitters” approach to identify patient subgroups each with its own discrete cause. Based on studies of the brain, he is working to identify a subgroup of CFS patients with brain dysfunction as the cause of their illness.”

https://www.masscfids.org/news-a-events

I don’t believe there’s a THING that causes fibro, I believe there’s a STATE that your body gets in that makes it easier for the illness to run you down and drive over you a couple of times until you can’t get back up. I, like lots of other fibro sufferers, had a virus that I never seemed to recover from coupled with long-term severe stress. For the past five years, blood tests of mine have consistently revealed that my body believes it is fighting an infection, however I no longer display the symptoms of whatever that infection is or was. I have no trouble talking about or admitting to a history of depression both in myself and in my family but it bugs me when that is put down as the root cause while I have clear physiological symptoms.

Hi Rachel
I am one of those who believe that all these disorders should be lumped together but certainly not for psychological reasons! I believe they are all caused by a brain dysfunction and that the main point is – what caused the brain dysfunction? Some experts believe it is a limbic system dysfunction which I agree with. A German study more than 10 years ago proposed a dysfunctional HPA axis. It is only a small study but there have been many since that confirm this. This study is interesting in that it shows other endocrine dysfunctions within the hypothalamic-pituitary connections and proposes that these originate from dysfunction of the cortisol releasing hormone neurons. One article I’ve read states that CFS results from dysfunction at the hypothalamic-pituitary level whereas FM results from dysfunction at the hypothalamic or supra-hypothalamic level. This could indicate that the causes of dysfunction are different for both groups but that basically the dysfunction is very similar in both disorders.

http://www.springerlink.com/content/y4e2fl2ajmcg4qw5/

I would also like to comment that myofascial pain syndrome hasn’t even been mentioned here whereas I believe it is common to both disorders and is the cause of the pain, with resulting dysfunction of the pain processing areas of the central nervous system. There are studies that show that HPA dysfunction can cause trigger points to develop and there is lots of other evidence available to support this.

Don’t get me wrong, I too see that there are many overlaps between the two conditions. In fact, I had the unique experience of becoming ill with ME/CFS at the same time as a good friend of mine developed fibromyalgia. We were both working the same stressful job, going to aerobic classes together and drinking gallons of diet coke, which had just come out on the market. Her symptoms of pain were just as profound as my symptoms of malaise. In fact her pain was so intolerable that my good friend eventually took her own life.

I too believe the problems in both conditions are caused by some sort of brain dysfunction/damage, but they are unique in the fact that one causes mostly pain and the other mostly flu-like symptoms. Exercise seems to help many FM patients, but only exacerbates symptoms of ME/CFS.

Tricia, an Interesting study: “However similar the fatigue and pain may look in, say, CFS, FM, MS, depression and healthy controls, something very different is going on beneath the surface.”

“A Head Turner: the Fibromyalgia group – This group was COMPLETELY different, which must have been something of a head turner. In fact, most receptor levels decreased after exercise, suggesting that for people with FM only, as with the healthy controls, exercise tends to reduce pain and fatigue levels. This suggested that FM, for all its surface similarities to CFS, is at least in part, a very different disorder – as Dr. Natelson’s findings have suggested.”

http://forums.phoenixrising.me/content.php?446-Light-on-ME-CFS-I-Bad-Reception-A-Key-to-ME-CFS-Uncovered-The-Light-Gene-Expression-Studies

Interesting to read Dawn Rowley’s comment about her daughter who was just diagnosed with Ehlers Danlos Syndrome hypermobile type last summer.

I am 60 yo and was diagnosed with FMS about 6 years ago. About 6 months ago I was diagnosed with hypermobility joint syndrome … not as severe as Ehlers Danlos, but some believe on the continuum. 60 years for this diagnosis for a condition that has plagued me my entire life! And yes, many people with this syndrome go on to have FMS.

My question has been the same as Dawn’s…”It makes me wonder how many people do not realize they have this other condition as well.”

http://www.dynakids.org/Documents/hypermobility.pdf

I have been told to do restorative yoga and it has greatly enhanced my quality of life increasing my energy levels and decreasing pain!

Abusive childhood and adolescence, Married at 20 to escape to psychologically abusive, controlling husband but life was better than before until his alcoholism became worse and he was gone a lot of the time. Went to grad school and got a well paying job. messy divorce after many years. Mother, brother, committed suicide; sister attempted twice; she died after long battle with autoimmune diseases. Demanding job–lots of stress. Children grown but blamed me for end of marriage. As child, had terrible leg aches at night. Wrapped legs with sewing remnants.. Always took care of myself. kept my emotions to myself for self preservation.. At age ten had both chickenpox and tonsililtis. periodic leg aches in adulthood. After separation, had periods of unbelievable fatigue without major flu symptoms–usually during time off and holidays. Had major surgery and went right back to work after six weeks. Took on new duties and also joined committees to supposedly help at a time when working conditions were deteriorating. Visited sister and got mildly sick after whiplash when we were hit from behind Began to feel such fatigue that colleagues insisted I see a doctor. After being sent to a well known rheumatologist, I was diagnosed with fibromyalgia at the same time my new husband was diagnosed with andincurable, physically debilitating disease. I could not continue to work. At this point my sister died. Now, after five years, I can vacation for a week but must be prepared for fibro time in bed, no matter how careful I am. I’ve become a home body….keep hair and nail appointments to feel good about myself. These are major outings at which I might shop a little. Most angry when people think I am not sick.

I think it is all linked to what we experienced in our childhood. I grew up with an abusive, alcoholic father that left me terrified on an almost daily basis. I feared for my mothers life and witnessed him physically abuse her. As a yound adult I suffered from depression and self medicated with alcohol and marijuana.
After the birth of my first child I developed fibromyalgia with the unending muscle pain. I thought I had bone cancer but the doctors all said I was fine – all the tests came back negative. It was 5 years after that I was finally diagnosed by a doctor as having fibromyalgia. Since then I have met other fibro patients and they all had childhood trauma, mostly due to their fathers.
I think when you live with so much fear and stress as a child that your brain and body don’t develop properly and this in turn becomes fibromyalgia when you are an adult.

Great discussion! I’m 59 recently diagnosed. More severe Chronic Fatigue Symptoms,a “side” of Fibromyalgia just for fun, some degenerative arthriritis just to keep it all even! Not sure what the cause is though. It could go to childhood illnesses. “. Lots of flus, ear abcesses,eye infections, worms, strep throat etc, Mono & Rheumatic Fever @ age 13 treated in 60’s with 2 yrs of shot a day of a million units of bicillen. (Doubt would happen now) Aches/pain in legs & hands; cold/heat intolerance, chemical sensitivity, fainting, vomiting & insomnia as far back as I can remember. Drinking water out of brooks & streams. If ever did complain of pain was told it was growing pains or hypochondriac, by the time was a teen and very ill, would not tell parents did not want to be ridiculed . . A mom at age 19, followed by major abdominal surgery: that chronic pain was appendix & ovary wrapped & strangulated to themselves over the years, It burst . I Always worked, to the max.anything to make a quarter . Out on own age 17. Next 30 yrs, push/crash/push/crash pnumonia,x 3. insomnia, Reynaud’s, miitral prolapse, infertility, endometriosis, hysterectomy, alcohol /drug intolerance, acid indigestion, IC, strep throats,mono relapses Low body temp so when 99 I am hot!. more…

I can’t think of one singular event that caused my fibro. I suspect it came about after a long series of things that just twanged the last cell of my immune system. Was it the abusive childhood? The car accident with fatalities at age 6? The frequent strep and other upper respiratory infections while living with chain smoking parents? The precipitous delivery of my child that has so far resulted in 2 surgeries to try to keep my insides where they belong? The ruptured disk and fusion in my neck?

I suspect a combination of genetic susceptability and the right combination of events at the right times are the triggers. I’m not sure there will ever be a cure since everyone seems to have a different combination of things that seem to trigger it. I just hope for more effective treatment without adverse side affects.

I’m not sure when mine started, but I know when it ‘came to a head’.. I’m 58 and have never been a high-energy person. As a kid, my idea of a good time was laying in bed with a Nancy Drew book. In my early 20’s I got Mono, and never felt like I got my old energy back. In 2009, I had a string of stressful events: death of 2 beloved pets, lost my boyfriend (my idea, but still very sad), had horrendous abuse on my job, had my knee replaced, first my uncle, and then my mother died, got a sinus and ear infection that lasted 4 months and 3 rounds of heavy duty antibiotics. Then (no surprise!) my antidepressants stopped working. After working 10 hr days for 3 weeks, I dissolved in a puddle of tears after a verbal beating over the phone from my supervisor and BAM! it hit me! I never could go back to work. The pain I’d had all over since the knee surgery was out of control and it took 6 mos. to find the right antidepressant ‘cocktail’ to get the crying to stop. It’s been nearly 2 1/2 yrs since I left my job of 27 yrs. At the time I was dx’d with FM and CFS I was diagnosed with 2 auto-immune disorders (both nearly gone with txmt). So, when did it start? Which came first, the chicken or the egg? I wish I knew. All I know is the egg is on my plate and I try to make the best of it, one day at a time!

Rachael
I have read this article from Phoenix Rising before and see it only as yet another study hoping to prove that the fatigue and pain of FM can be improved with exercise. I can only wonder who the actual participants of these studies are and whether they have been properly diagnosed with FM or if they do have it, how far along in the disease process they are. Some doctors will diagnose FM if a person has localized pain and not do a tender point test whereas it is necessary for tender points to be present in all four quadrants of the body to have FM.
One can have the appropriate number of tender points but actually have no pain at all. I myself can go for long periods of time without pain and didn’t actually start getting widespread pain till I reached a certain number of years from menopause and probably only then as I was leading a stressful and demanding life, topped off by a minor car accident. Addressing my hormonal imbalances and treating my trigger points has meant more long periods without pain and I have rarely needed even a mild painkiller for the past 10 years. I cannot , however, exercise without becoming ill and my BP and pulse falling. My own experience has led me to develop the theory that FM has different stages.
I believe that the reason that it is possible to have all these tender points and no pain, is that the tender points are actually trigger points (which are not painful when latent) and this has been confirmed by studies in Europe and is catching the interest of many in the US. Whether or not the trigger points become active and cause widespread pain, depends upon a long list of perpetuating factors of which exercise, hormonal and neurotransmitter imbalances, infections, toxins and nutritional deficiencies are the most obvious for aggravating FM.

Rachael, I would like to add that I believe this is why some believe that a car accident or severe infection can trigger FM as they may not have been aware of the underlying process happening in their bodies since childhood and only surfacing when the trigger points have all been activated .I believe that early in the process of FM, before hormonal and neurotransmitter imbalances become too severe, gentle exercise will relieve these imbalances enough to deactivate the trigger points and relieve pain and weakness. I myself was able to exercise in my teens and was an athlete and hockey player but I now believe that these activities actually helped to make the trigger points worse and is probably why I did get occasional repetitive strain injuries during my life before the widespread pain started. Up until that time, my flares consisted only of malaise and weakness, so bad in my mid 20s that I couldn’t work, but I do not have CFS or ME as I do not have sore throats, swollen glands or fevers.
I myself believe that PWCFS/ME don’t get much pain as they are much earlier in the process and don’t have widespread activated trigger points. However, sore throats can be caused by trigger points and lumpy trigger points in the neck can be mistaken for swollen glands. Fevers are a symptom of an overactive immune system and can appear in many other similarly activated diseases. If you look at the extremely long list of symptoms common to FM/CFS/ME, you will see that most of them can be caused by trigger points as trigger points not only cause pain but can also cause a wide range of autonomic effects.

Rachael, I can see how you have developed your theory ,also based on your own experience and that of your friend. it is interesting that in doing similar things, you ended up with different major symptoms but I believe there would be many other factors to take into account. I too became a lot worse when doing a course of aerobics in my early 30s but there was also the fact that I had recently finished a 6 month stint of night duty and after having 2 children and breast feeding for amost 4 years. However, pain was still not an issue for me then.
I empathize with you on the loss of your friend, especially as I too lost a fibro friend to suicide only 9 months ago. I only came to know her when she was beyond help and that does hurt.