Hello all! This is my first thread posting, so bear with me. I hope I get this right!
I have developed a personal theory about fibromyalgia that I’d like to put out for further input/discussion. It may already be in the boards somewhere, but I couldn’t find it, or it may be someone’s “patented” idea, but couldn’t find it either. Sooo… here goes:
In my admittedly on-going research, I keep coming across what appears to be four common factors amongst people with fms. Please bear in mind that I am NOT medically trained and am simply curious about a pattern it seems I’ve found amongst people I know or have communicated with and whom already are diagnosed with fms.
So, here goes: it appears, so far, that a person meeting any three of these four factors will likely – eventually – have/get a diagnosis of fibromyalgia. They are (in no particular order):
1. A lack in thyroid gland output, AND/OR
2. A lack in adrenal gland output, AND/OR
3. Some sort of “trauma” (as in, some kind of bodily stressor such as illness, surgery, accident, long-term stress, stroke, death of loved ones, severe year-round allergies, etc.), AND/OR
4. Family or personal history of endocrine-related illnesses or conditions (such as diabetes, high blood pressure, insomnia, Addison’s, etc.)
I realize that this is not a complete or concise listing of these criteria – frankly, I’m still gathering information and, again, I’m only a lay person and don’t really know how to phrase these criteria very well (another foggy brain day!). And these criteria may seem glaringly obvious to some of you more knowledgeable veterans and your input would be greatly welcomed. I just hope I’ve made the general idea clear enough to get us started. In addition, let me say that “trauma” as I’ve defined it above (right or wrong) is ANY event or circumstance that would have put your body into “red alert” for long enough for your body to have had an eventual “flight or fight” reaction, whether you knew about it or not.
Anyway, in my current theory, this would mean that anyone with any three or more of these conditions would be a very likely candidate to have fibromyalgia as well - and vice versa. There is also the possibility that the hypothalamus and pituitary glands are involved, since there is a biochemical feedback system between the three – hypothalamus, pituitary, and adrenal (HPA-axis) – but I haven’t yet found a clear connection with hypothalamus and pituitary.
SO! I’d like to hear from anyone who has constructive input on this theory, but I would REALLY like to hear from any of you who DON’T meet at least three of these criteria AND who have been diagnosed with fibromyalgia. Again, please bear in mind that it is just a personal theory and be gentle with me!
BTW, I’m not writing a book, nor doing any kind of research but my own. I simply thought it would be interesting to find out how involved the entire endocrine system is in fibromyalgia, apart from the specific research on sleep issues (non-adrenal gland related) or pain receptors.
ya know, you might have something here. Yes, I did have a very stressful early life, and was always a "worrier". Did have surgery fairly young, have had family strife early on... Does that sound like your theory? Diagnosed in approx. 94 or 95...but told I had FMS about 15 years before that.. My body crashed about 5 yrs. ago....finally was told that I had adrenal insuffiency....and was put on cortif.... I improved amazingly. Now off of the cortif....have been off of it for 6 months.. Prior to that I was on prednisone during the late 90's for about 2 1/2 yrs....5 mg. My rheumy had me on it for my FMS....hummmmmm..... It made me feel better...hungry..but better. I had been on a lot of pain meds. for the last 5 yrs. due to a bad fall and following ACDF and SI joint fusion this last summer - as well as another fall last winter in the snow...injured my knee and had to have surgery on that also...So currently I am not on anything for the FMS...and have almost stopped taking all pain meds. for my back pain, feel like a time bomb waiting for the big one...feel the symptoms creeping back in...
I would say I meet none of your criteria, except maybe family history. Some of my relatives have developed diabetes, high blood pressure, or hypothyroidism late in life. I developed FM at age 18, no precipitating factor, no history of severe injury, no other health problems except mild allergies.
However, I do believe that there are several different things going on within the umbrella of fibromyalgia. I suspect science will eventually find two or three different disease processes, (maybe one in the central nervous system and one in the immune system?) and that some of us have one but not the other.
My symptoms are primarily pain and muscles spasms, worst near the core of my body. I don't have brainfog or dizziness, I rarely have unusual fatigue except in bad flares.
Your theory is good. I like it, but i only meet 2 of the criteria I have a slightly hypeRthyroid, but not high enough to be medicated (I weigh a whole whopping 106lbs after 4 kids and I'm 27), as fas as I know my adrenal gland is working just fine, but I've got a muskularskeletal disease called Nail-Patella Syndrome. I've had a life full of trauma in a number of areas. I was abused as a child, sexually abused as a teenager, in fostercare and got pregnant at 17. I had an emergency c-section in 2005 which started a lot of the symptoms, then a hysterectomy in January of this year, which suddenly made my symptoms crash down on me. Both grandparents on my dad's side died early from complications from their diabetes. So, I think you've got your theory working for you, but maybe a couple more things could be added if you were looking for more people to fit in.
Hi there. I don't have a lot of time to talk right now, I am on a break at work. I only fit into 3 & 4. My mom has had trouble with her thyroid, but not me. Keep posting, I'm interested. Thanks, Kim
you are asking really great questions! here are my answers - 1. no thyroid issues, yet. my sister had thyroid cancer, my mom has hashimoto's. 2. i have an adrenal adenoma, but it has been determined to be non-functional. so, because it's not putting out any hormones, i'm not supposed to worry about it. also, i have no spleen and i have 2/3 of my pancreas because of a cystic lymphangioma. i had the surgery in 1997. 3. my symtoms followed both long term stress and a traumatic incident. and 4, the significant health issues in my family are with my mom, who has many autoimmune issues like ra, sjogren's, raynaud's, elevated m-protein in the blood (which i have also), and hashimoto's as i mentioned before. my sixteen year old son also has autoimmune urticaria and has a lower than usual IgA (but not low enough to be labeled "deficient"). anyway, my body had definitely been in "red alert" since july, with no relief in sight. please share anything you might theorize or discover from the information you collect. maybe you are on to something! lily
hi
your theory is interesting and yes most sufferes hve thyriod problems as do people with B12 problems .....
we could go a little further and ask what would cause these problems of the thyriod adrenals ect....
You may find it
interesting to search b12 and CFS/FM
these specialist suse b12 in large doses for their treatments you can search them to find out more problems with methylation can cause all the symptoms of these disorders
Drs. Paul Cheney, Charles Lapp, Kenny DeMeirleir, Jacob Teitelbaum, and Martin Pall - consider vitamin B-12 a mainstay of treatment.
The Methylation Cycle is a biochemical pathway in the manufacture of DNA, RNA, phospholipids (myelin sheath of nerves), neurotransmitters, adrenal hormones and over 100 enzymes. The Methylation Cycle is also required for numerous detoxification reactions
Methylation defects reduce detoxification ability and cellular energy production, decrease serotonin, dopamine, melatonin and other neurotransmitter production, decrease adrenal hormone production and increase levels of toxic homocysteine.
The methylcobalamin form of vitamin B-12 is required in the Methylation Cycle. If any one step in the Methylation Cycle fails, the entire cycle fails.
It is very interesting i have a b12 deficiency that is genetic a problem in the pathways and use Methylcobalamin and dibenzicode it has really helped me so much I wasa real mess before.....
I only have one of those factors that I know of. My main illness is Lupus and my Rheumy says that Lupus patients or patients with an auto-immune disease almost always have Fibromyalgia.
Very interesting theory indeed. I have 3 of the four... or rather, I don't know the condition/s of my adrenals. They have not been tested that I know of (Doc hasn't mentioned anything that I can remember anyway).
I have another theory that could easily fit in with yours though... I have felt that the chemical additives that are so prevalent in our food might have a very BIG impact on us. Many series of incidents of health throughout history are being directly affected by diet. One example is an outbreak of goiter in the States somewhere around the 30's and 40's. Folks were not getting enough iodine in their diets and their thyroid glands were suffering. This was why they now put iodine in your table salt. With the latest trends with "designer" salts like sea salt and kosher salt, I wonder if we will start to see goiter again in our citizens. (though the availability of seafood now may negate that)
Anyway, I am old enough to have grown up consuming many chemical laden foods that had that nifty "processed" label on them somewhere, and I firmly believe that that might have had a great impact on the deteroration of my imune system. I try to eat as wholesome and organic as possible now, but I fear it's too late to repair the damage.
Great thread! I'm going to be watching this one closely!
__________________
Your art is an expression of your soul
Many thanks to all of you for your replies! I LOVE the responses I'm getting!! Unfortunately, I'm really strapped today for both time and energy (blankety-blank flare-up! ), but I'll try to get back to all of you asap. I may be out of the loop on this topic until Monday, but, meanwhile, PLEASE keep the responses coming - any one who wants to share or add background medical info is MOST welcome to do so.
Already, each of you have given me a lot to think about... and I will think about it just as soon as my ability to think returns... Oh, Dratted Brain Fog, will you please just go back to your dwelling place in the Field of Forgetfulness (and stay there!) so that I can THINK about what my fellow sufferers have to say?!
And here's wishing all of you happier, healthier days until we "meet" again!
Hmmm... I'm not completely sure of the things you listed, but I have wondered about a number of things that seem connected to fibromyalgia.
My daughter had these things as a child (and still has some of them).
I'm curious if there is some sort of link or pattern that others have noticed, too. Are children with the following maybe more likely to get fibromyalgia later on? They include:
- "Growing Pains", especially leg cramps (she now gets muscle spasms)
- Sleep walking/talking (poor sleep now)
- Always was a napper and often needed at least 10-12 hours of
sleep each night
- Gets sick easily and usually more severe symptoms than her peers
and stays ill longer
- Asthma
- mono as a young teen
- painful cycles
- needed increasingly stronger glasses more than once a year as a child
I haven't listed everything I could, but I'm thinking that, just as you listed things that seem to be common among people with fibro, there may be early indicators that can be traced back to childhood in people that developed the condition. Has anyone else thought about this as well?
I have no adrenal or thyroid problems. I was in a car accident, a few years later my son died. I've had fibro for over 17 years diagnosed. I think I always had it to some degree, but the car accident put it out of control.
Of course there is an exception to every rule: I fit into only number 3, but not from any form of physical trauma. I fall into the emotional abuse survivor rule of thinking. I never suffered from any of the things listed as precursors for children to suffer fibromyalgia as adults. I also don't have any other illness other than what accompanies fibromyalgia (IBS)..
I've been told my circumstance is fairly rare.
Of course there is an exception to every rule: I fit into only number 3, but not from any form of physical trauma. I fall into the emotional abuse survivor rule of thinking. I never suffered from any of the things listed as precursors for children to suffer fibromyalgia as adults. I also don't have any other illness other than what accompanies fibromyalgia (IBS)..
I've been told my circumstance is fairly rare.
What is the theory that you are discussing about abuse, thyroid, etc. I was just diagnosed one month ago. Have been in a really bad flare, they say as the result of a year or so of major trauma in my life. Ironically, now in more trauma as my son and I face life alone after my husband walked out in Aug. So here I am very sick, no family, running to doctors, no more married friends, trying like hell to feel better so that I can put our lives back together. Any info. I can get on how I got here, or how I can feel better would be a blessing. I feel like I want to die from the pain. The drugs like Lyrica, Gaba, Cymbalta, all don't seem to work for me, and just seem to put weight on. Luckily I am slender now, but I can't use them. I am awaiting this Sevella to come out on the market. I was a yoga instructor, and a therapist, and was in pretty good shape, but this has knocked me for a loop, and is depressing me as well. Anyone have any good solutions out there? I am going to my 3rd rheumatologist on Mon. to get one close to my home who knows what he is doing, and who is knowledgeable, and also sympathetic to this torturous condition. It affects everything in your life. I also probably had it for quite a while, was getting depressed, and tired, and didn't even realize it, nor did my stupid husband. Please relief me!!! Deb
Hmmm... I'm not completely sure of the things you listed, but I have wondered about a number of things that seem connected to fibromyalgia.
My daughter had these things as a child (and still has some of them).
I'm curious if there is some sort of link or pattern that others have noticed, too. Are children with the following maybe more likely to get fibromyalgia later on? They include:
- "Growing Pains", especially leg cramps (she now gets muscle spasms)
- Sleep walking/talking (poor sleep now)
- Always was a napper and often needed at least 10-12 hours of
sleep each night
- Gets sick easily and usually more severe symptoms than her peers
and stays ill longer
- Asthma
- mono as a young teen
- painful cycles
- needed increasingly stronger glasses more than once a year as a child
I haven't listed everything I could, but I'm thinking that, just as you listed things that seem to be common among people with fibro, there may be early indicators that can be traced back to childhood in people that developed the condition. Has anyone else thought about this as well?
I had the leg cramping and sleep talking and loved to nap and slept long hours when I was younger. Also painful cycles but none of the others.
Some of this can be from other health issues, thyroid, PCOS. Don't know how this all relates to fibro, but it is something a lot of us share.
Hi! my thoughts on this............I believe, in my case, that mine seems to be a complication of poor quality sleep. Even when I'm sleeping at my deepest I'm still partly awake - similar to how we sleep as children when were excited, Christmas, before a holiday etc.
I talk in my sleep, grind my teeth and my bed looks like two little boys have been fighting in it!
I have a history of women's troubles, bad menstruation cycles, endometriosis etc. this ceased to be a problem when I had a hysterectomy.
The pain is mostly under control with co-codamol 500mg/30mg, but the 'fibro fog' is a pain in the neck.
Paracetamol sandwich, anyone????
Hi Kathy, You refer to #3, and speak of some kind of theory about trauma in our pasts. Would you be kind enough to share that with me Kathy? Right now every small bit of information that can help explain pieces of this puzzle would help. I am so new to this, and in so much pain I could use a friend, and all the help and information I can get. Thanks. 1Debbie
I don't know if you've done any research on the internet, and I know you were directing your comment to Kathy, but if you do internet searches, you can find lots of information on fibromyalgia and the theories about sexual/emotional/physical abuse and that they think it can or does contribute to fibromyalgia.
Yet another Fibromyalgia theory/question 
Re: Yet another Fibromyalgia theory/question 
Unfortunately, I'm really strapped today for both time and energy (blankety-blank flare-up! 
), but I'll try to get back to all of you asap. I may be out of the loop on this topic until Monday, but, meanwhile, PLEASE keep the responses coming - any one who wants to share or add background medical info is MOST welcome to do so. 
