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What is your theory about fibromyalgia?
25 Replies
kiwigal - January 6

Hello to all fellow sufferers of this awful syndrome

I am trying to find the cause of this condition - naturally with all the pain and the way it shapes my life I am driven to find a way to reverse it, as I am sure most of you are also. As I read through the boards, I see many similarities between my own history and some other posters. A short history of my condition follows:
I had a bad fall at age 14 and fractured some vertebrae - the back problems started from there but after finding good treatment they resolved for a few years. At age 22 in a sedentary job they resurfaced with a vengeance and again I sought treatment - I still had not had a diagnosis of fibromyalgia. Again after treatment symptoms abated somewhat. I had a minor knee injury at age 27 which was mistreated and the symptoms flared and would not stop despite many kinds of treatment. I also had major emotional distress during this period and marital strife. At age 30 I contracted glandular fever (for the second time) and chickenpox. I ended up developing chickenpox pneumonia and being hospitalised. I have suffered non stop since age 27 with this condition and only received a diagnosis of fms at age 29.
I think it is an imbalance in some or all body systems brought about by a combination of injury, chronic stress and emotional upset. What is your theory as to how fms develops? Does anyone have a pattern similar to mine with injury, illness and upset?
Any light anyone can shed would be most helpful!

 

13tracy13 - January 6

Everything I have read speculates about the injury and/or emotional upset also, with some pointing to genetics and a family connection.
I suffered a sever whiplash back around 1992, diagnosised with IBS in 1995 (age 15),
had Mono in 1997
diagnosised with GAD in 2000 and finally a fibro diagnosis Oct 2008 age 28.
But...
I have a family history of Restless leg syndrom, depression and anxiety and I believe my mother also has fibro, she has many of the same symptoms I suffer with.
So this may support the therory that there may be a family connection also.

 

kiwigal - January 6

Yes you could be right on the family trait theory - my mother was diagnosed with it and my grandmother had restless legs and was always at the dentist with 'neuralgia' problems with her mouth - she was never diagnosed with it though. It could be another physical problem which has been incorrectly diagnosed eg low adrenal function or thyroid. I have to say my diagnosis was less than thorough - the doctor basically prodded me in a few places and pronounced I had fibro. I am now thinking about going back to my doc for a battery of tests for other things - after all fibro is hardly a diagnosis - it is just a description of the symptom and does not identify where the problem is.
I am sorry you have suffered the fate of being a 'sick' teenager like I did - not a nice way to come into adulthood - visiting doctors and specialists rather than malls gossiping with friends.
Cheers for adding this angle Tracy - have you found good treatment now?

 

solanadelfina - January 7

I never had an injury or illness that set off my case. The only confirmed family member that has this that I know of is an aunt that married into the family, though it's possible a gene could be buried under other things. I also was not abused or neglected or anything. (As I had tried explaining to that rheumy before she cut me off after about seven words every time...)

I think you might have something with the chronic stress, though. I read somewhere that a great deal of us who are diagnosed are caretakers and overachievers. I started showing signs in high school, where I was an honors student and taking college courses and even a before school class and really pushed myself hard.

Stress can aggravate an astonishing number of disorders, and I think that anything traumatic or prolonged stress might serve to wake up a genetic component that's lying dormant. However, this is just a theory.

Good luck on your research, and please keep us posted.

 

tnichel - January 7

I thought mine was triggered by my gall bladder removal when I was 21. But I've since been rethinking that. My doc asked if I was a sickly child and I said no but after thinking back I'm not so sure. I was hospitalized at 8 months for a week with a bacterial infection that settled in my eye. They did a spinal tap and everyting. I had serious leg problems thoughout my life that were attributed to flat feet. Now I think the pain was the beginning signs of the fibro.

I also had walking pneumonia at age 8. Never met anyone else who had it. My senior year of college and after I constantly came down with stomaches viruses and couldn't keep any weight on. I never got colds...just bacterial infections and viruses.I also had a cyst removed from my throat at 17.

I just found out my family has a history of depression (not my parents). I'm currently trying to convince my mother to see a rheumy b/c she has a lot of fibro symptoms she insists is old age but she's only 52. She also has epstein-barr which was undiagnosed for years.

I was a sensitive child but not overly emotional so I don't think that triggered the fibro. My first job was high strees and I don't think that helped. right before being diagnosed I began suffering what I think were anxiety attacks. My mind was constantly racing. Just horrible. I thinks fibro is caused by several factors, at least by looking back at my own history.

 

kiwigal - January 8

Hi everyone
Yes I have read that stress can trigger it and that there may be a 'personality' type that develops the condition. People who develop it are generally high achievers, have solid careers and push themselves harder than everyone else. They are quite often also sensitive and people pleasers who cannot say no to others. That profile certainly fits me! I do everything for everyone - well I did before I developed this condition - now I am learning how reciprocal that relationship is and it is not really a two way street in most instances! I gave and gave and gave but because I LOOK normal people tend to not offer assistance.
I was also very sensitive as a child - quiet and shy and an only child with a solo parent. My greatest escape in childhood was reading, which I see now was probably a bit of loneliness. I had some symptoms of restless legs as far back as age 7 - I remember on some nights waking up and needing to rub my legs back and forth across the sheets for a soothing feeling. My mother thought these were 'growing pains' which all children apparently got. I was very active as a child, competing in national gymnastics competitions.
The symptoms didn;t kick in till later in adulthood though and at the time I was diagnosed I was working part time and studying fulltime at post graduate level, going through some major grief and marital difficulties, not sleeping well, not eating well and was depressed about the difficulties in my relationship. For years before that I had been supporting my husband in pursuit of his dreams in free time after fulltime work. I am pretty much convinced at this stage that stress and emotional trauma is the major factor - if you have that then a tiny injury can cause it, or illness, or surgery. Have any of you read the theory of 'kindling' in the development of post traumatic stress disorder? It states that chronic stress and emotional upset can trigger a process called 'kindling' in the brain. Once kindling begins it rapidly reaches fire stage and there are permanent rewirings in the brain , some of which can cause ... surprise surprise ... chronic pain.

So at this stage my theory is that this rewiring in the brain happens and causes imbalances in all other body systems as the body struggles to survive. When the imbalances become severe enough we get symptoms. I am pretty sure that when I get my hormone levels tested they will be out of kilter - and adrenal levels will be especially low due to the chronic exposure to cortisol from repeated fight or flight experiences. It's a developing theory I admit! But a better one than given by doctors I have seen "You have fibromyalgia - learn to live with it" There has to be something to cause all these symptoms
Cheers to everyone for responding - it helps to consider diverse case histories and know I am not alone in trying to solve this puzzle blindfolded! It is also awesome to meet some others who are YOUNG and have it like me!

 

13tracy13 - January 12

My diagnosis was a process of numberous blood test, x-rays, scans, more blood work. I have to say my Drs were very good about ruling out everything else before sending me to a rhmey who then done additional blood work and x-rays. After all that and the pressure test on the tender points he diagnosised me with Fibro. He believes that Fibro is a chemicl imbalance. How ever I just found out he is leaving the practice I was going to, so I'm thinking I'll just wait until I see another Dr before I start treatment so I can get a second opinon. I'd hate to start one treatment and this next Dr believe I should have went another direction

 

axxie - January 12

You might be on to something, I have also wanted to know what it is that we have that is giving us fibro.
I'm 51 and several years ago, I had a bad fall at work. Went to physio, I could not let them touch my back, it hurt so much. Doctor and I thought it was just very sensitive and was given pain pill. Maybe two years prior I started with the restless leg syndrom. I was diagnosed and well thought it was because of my job. Sitting too much at work and under alot of stress. Prior to that I had big episode of lactose intollerence the pain was so bad, that I thought it had to be the food I ate. Prior to that we had been transferred out of Texas to take a posting in Canada. That triggered the worst feeling in me. I'm finally settle in Canada and doing fine, but let's not kid ourselves it's not Texas. I was emotional, trying to find a job, getting the kids in school, finding doctor's, money and just plain marital and family stress. Althought I was not in a depress mood, I felt like I didn't belong home (Texas) and I didn't belong in Canada either.
Found a job was quite happy, until I met my boss she was a horror to work for and put a lot of demands and stress on me (restless leg syndrome). Got a transfer and was happy once more, I felt competent and my life seem to go smoothly. Go on holidays, come back and hurt my back the very first hour back at work. Got physio and could not figure out why my back hurt so back after physio. Worked with physio and wen't back to work. Worst mistake of my life.
Back was giving me loads of problems and was having problems figuring which day it was. There was emotional problems, I couldn't figure out why it took so long for me to get back into things.
Finally changed doctor's and she thought I was depressed, told her no, but maybe I was at that point. Doctor's ordered all kinds of test, and at one point the MRI for my head confirmed that I had MS. Went to a renowned Neuro and was told I don't think you have this, but we will order more test. All came back negative, finally the fibro came into play. Went on web and found syndrome and sure enough this is what I have. I am at home now and feel like I am not contributing. I wan't to go back to work, but afraid I won't be able to handle the stress and long commute. Last winter while working, I remember one early day, my legs felt like they each weight 50lbs each and the only thing I wanted to do was to throw myself in the snowbank and fall asleep. I hadn't started my day at work yet. It's been hell and I am trying to find myself again. Anything on this board is better then not knowing.

 

kiwigal - January 22

Hi Axxie - sounds like you had massive stress and upheaval too for several years. The point is that stress creates endocrine imbalances between the hypothalamus, the pituitary gland and the adrenal glands. We don't realise it at the time as we are pumped on adrenaline but surely afterwards there must be a price to pay. This is my theory anyway. You are all very lucky if you have had lots and lots of tests - in my country the diagnosis is not a ruling out of anything else - you just get the pressure point test.
What annoys me is that fibromyalgia is just a cluster of symptoms so when you have that diagnosis doctors just give up and prescribe meds to help you cope rather than looking for the cause of the imbalance and correcting it. It doesn;t make sense to me - in any other condition they would look for a cause and try to correct it to bring the body back to balance. I am wondering if this is because the syndrome mostly afflicts women (and as we all know women are irrational creatures prone to hypochondria and hysteria!) Thats not my opinion - that's just the attitude I encounter in the medical profession.
I am annoyed at having to do my Doctor's job for him - he's the one with the medical degree - not me! However if I hope to be well again I must keep going with this. I still think it is imbalance linked to chronic stress and a body weakened through illness (such as mononucleosis) and injury. I am now wondering what would be the best tests to really nail the deficiencies as standard medical tests only give the 'acceptable' range - not the level that is required for my particular body. I am wondering about hair analysis and live blood analysis - has anyone tried these?

 

Anne Hillebrand - January 25

Virus, Abuse/Stress, Trauma, and Physical Damage to the Liver (often a rear end car accident) are the 4 things commonly known to have happened to people who have Fibromyalgia.

Anne
FibroFix

 

Lydia - February 7

Fibro due to stress/trauma was where I believe it stemmed from for me. Goes to show the mind is very connected to the entire body regardless of how much ones tries to ignore....

 

sahmraw - February 9

I was hit with a hockey stick at 12 and my ankle flared up regularly. I was always sickly and had terrible period pains. I was raped at 19 and then I ended up in a violent abusive relationship. I was told i had glandular fever when I was 19 as well, but the blood tests were negative. During my first pregnancy I had terrible problems with my pelvis. I was left permanently disabled. By 2003 I was in agony all over. i was finally diagnosed with FMS. I have been very ill ever since. I have been through terrible trauma over the last 12 months and my condition is getting worse all the time.
My mother has Systemic Lupus. She was diagnosed in 2005 with FMS as well. So therefore we have been told there is a genetic link.

I hate having FMS and clearly stress does exacerbate symptoms.

 

momerath42 - February 10

It's a brain thing!

I was diagnosed at age 19, and am now 27. I was not abused, and did not have any serious accidents/injuries. I did however have multiple viruses as a child, mostly respiratory.

My theory is this: the central nervous system is hyperactive, therefore becomes overwhelmed, and amplifies pain response. This in turn causes fatigue/non restorative sleep.

Basis for my theory: in addition to reading articles, etc., the only medication that EVER worked for me was an anti-seizure, which slowed my nervous system. Unfortunately it slowed too much and I couldn't function and slept all the time (very bad when trying to attend classes in grad school) but I had ABSOLUTELY no pain!

Thoughts?

If I had the time/money/means I would love to do a study to see if my theory is correct.

 

powderblue - March 29

From what I have read there may be a genetic predisposition for fibromyaliga. My mother has Chronic fatigue syndrome(related condition). As a child I probably was more stressed than most due to a stressful childhood. Originally I was diagnosed with occupational overuse as my condition was localised in my hands and I was working in a call centre. However after going for a run I aggravated my condition severly and it spread throughout my body, and a month later I was diagnosed with fibromyalgia. Fortunately I had a quick diagnosis unlike yourself and some other sufferers. Over the next nine years my condition improved considerably and my level of physical activity increased. I managed to lead a fairly normal life and managed to run a half marathon. My only restricitons were in repetitive hand movements. Even though I had some very stressful periods during that period I only had one bout of fatigue for a month leading me to believe that stress was not the only factor triggering my FMS. I continued to periodically have an irritable bladder and over the last three years have developed and irritable bladder (often common with those with FMS). Last year after changing my diet because of irritable bowel symptoms, in the middle of training for a triathlon and combined with mental stress and the fact that I work shiftwork I had a flare up. My pain returned to a lesser degree than the first original bout. I have since had two minor flare ups. I think the body is hypersenstitive for those with FMS and I agreee that there is must be an imbalance of body systems. By the way I'm a kiwi too (I live in New Zealand)!

 

powderblue - March 29

Oh and having read the other posts I totally fit the personality type of someone with fibromyalgia too so I guess that is a consideration. In my mother's case she developed Chronic fatigue syndrome after a bad flu/virus during a stressful period of her life.

 

sandra17007 - March 29

Hello everyone, I'm new, but will give my two cents in.
Didn't have a great childhood, was raped when I was 9 years, I was told by mother that I couldn't tell anyone, it was too shameful. They did find the offenders and I do know they went to justice, but never found out what there sentence was.
Parents were separated, father an alcoholic, did not have a great childhood, left high school to find myself. Returned home went back to school, was in college still at age 23 when I was diagnosed with cancer of the ovaries and also had my lymph nodes attacked. Several operations, a mix of chimo in all forms and cobalt treatment, I was back being myself. Was on some kind of pill or another for problems of the female kind.
Age 33 married, age 36 adopted a 4 week baby girl.
Hubby is military, so off he went to golf war, and Haiti, I continued working in a very stressful job and was never one to complain, kept my mouth shut and did the work and did more. I was always the one the younger girls talked about at their smoke break. I hated it, but never paid any attention, I was advancing and I piled more work on myself to succeed. Daughter was still young and decided to take 6 months off, when hubby returned and we vacation for better part of those 6 months, it was heaven. Returned to work and life seem normal for a while, but hubbies job is never normal and there is loads of stress for him and his energy sometimes brought it home, still we got along well and had tons of fun. Finally took a buyout from where I was working and started another job, didn't like that one, so searched for another, until I went back to college, studied in college, got job after graduating I was in heaven, life doing well.
Got transfered out of State and it I could'nt cope with transfer, here again I had to start over for a job and getting to know another country. Got emotional and had problems with thyroid, once on treatment I was well again, had a great years, and loving my new found love, being a substitute teacher for hard to control children, I loved my student and never had problems with them. Three countries later and finally landing in Canada for a three year stint, we have been here since 2002, and haven't left yet, I now call Canada home as we will be here for another 4 years, hubby doing well in foreign posting and done well. Found work, higher I went the more stress it would seem. Finally had emotional breakdown in 2005 and worked through it, but still remained at work. Finally land a nice job again, and all is well and hubby too, we were doing well, minus the stress of handling hard jobs. Had an accident, and had problems with back, had many physio treatment, but always complained it hurt, again I go through it and returned to work, only find everything has changed and I still had physical problems, was diagnosed with MS, only to be told, by neuro, that I didn't have it, what I had was Fibro.
On Cymbalta and Trazadone, only been 3 months, I misplace everything and talk funny sometimes, I'll say good kitty to the dog and tell the cat he's a good puppy. About a year or so ago, I had the most terrible flu, lasted one day and never been well since.
Must be emotional, stress, and a brain chemical that is out of kilter.

 

axxie - March 30

I would tend to believe some of us, have had either injury and emotional upset, or both, maybe even genetics who knows.
I'm more thinking it's imbalance in chemical the glandular disorder, to me it seem we may have started with one thing and then gradually it eats at you until you are finally diagnosed with Fibro.
What I don't get is many people are diagnose with MS and other diseases also. Could it be a brain chemical imbalance also?

 

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