Fibro is not a disease

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Katted
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Date Joined Mar 2005
Total Posts : 12
   Posted 12/16/2008 5:26 PM (GMT -7)   
I have been diagnosed with Fibromyalgia for at least 5 years, and it always frustrated me how it was only referred to as a disorder, and how it wasn't a disease because there was not a specific cause.
Since the symptoms of Fibromyalgia are like what happens to anyone after they don't sleep well (but not the same thing) I always thought it was caused by some kind of sleep problem.
I finally got diagnosed with Narcolepsy and realized that Narcolepsy is the disease which causes the fibromyalgia.

Fibromyalgia is the specific set of symptoms, like how a fever is a symptom, fibromyalgia is a symptom and of course we all know the definition, the specific tender points and the other symptoms that are unique to fibromyalgia. I was never satisifed with the diagnosis of fibromyalgia alone, because it didn't make sense to have something like that but no reason for it.

I've noticed that almost everyone on Fibromyalgia message boards have several conditions, and people are always asking the 'chicken or the egg' question. I think Fibromyalgia, whatever processes cause it to occur, results from a disease. Because the tenderpoints are in specific and symmetrical spots, a specific part of the brain/nervous system is affected. Nobody with Fibromyalgia reports having good sleep (without meds). Plus, if you deprive people of sleep for about three days, they begin to show symptoms similair to Fibromyalgia.

There must be a way to trace the tenderpoints back to the spinal cord and to the sections of the brain affected. Its not just too little serotonin and too much pain chemical, because something must be causing that. If they can find how Fibromyalgia is manifested, they can find out what diseases cause it, and if they can't fix those diseases, at least they could stop the Fibromyalgia in its tracks.

I'm only 23 and I've spent 5 years since I entered college (18) going to every kind of doctor I could, and I researched all available options. I did all the different tests, and never found something to satisfactorily explain nor treat my Fibromyalgia.
I finally got the sleep study done as I developed a new and debilitating symptom: sleepiness. Narcolepsy apparently starts slow, sort of under the surface, and then just pops! up.

Everyone seems to have other conditions, and maybe there is a correlation between what causes them (imbalances in hormones, degeneration of tissue...) and how that cause also manifests Fibromyalgia.

Fibromyalgia is not the final answer.
Maybe if we focus on treating underlying condition, that could be the source of the Fibromyalgia, then the Fibromyalgia can be diminished or cured.

Grailhunter
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Date Joined Nov 2008
Total Posts : 159
   Posted 12/16/2008 6:42 PM (GMT -7)   
The tender points are the same because its the points that the muscle is connecting to bone. If you have a tight muscle long enough, its going to usualy hurt at the muscles anchor. For instance, people without Fibro, but have tight neck issues allot will frequently hurt at the Occipital nodes, the bumps you feel over near your ears. Thats where the sterno clido mastoid muscles, the main muscles that hold your head up straight anchor on the head and then they anchor on the chest just under the sternum. 2 muscles there can produce 4 diagnostic pain points.

Also, each muscle has areas that are specificaly vulnerable to developing trigger points, which are basicaly tight little bands of cross tissue. Once a solid trigger point develops, it can take up to ten years of working, stretching, masageing and releasing a trigger point for it to return to normal.

Each trigger point has a pain referal area, or up to several areas that a active trigger can and will make you hurt somewhere that can be very far away from the trigger point itself.

Notice how often when the back of your neck hurts, you also have a forehead headache. The forehead pain is refered pain from the SC Mastoid muscles being to tight.

Anyhow, that's all sort of meaningless other then to explain why we all tend to hurt in the same areas, more or less. Stress tends to effect certain muscles more then others. Most people, with Fibro or not tend to carry their stress in their necks and shoulders and upper back muscles.

I agree with you on the principle that there has to be a cause. You can't have an effect without a cause. I had terrible TMJ for years. I got therapy on the jaw, I stretched it, I massaged it myself daily, I did everything I could think of and everyday I still had a tight painful jaw. Suddenly, after years of suffering it disapeared almost overnight. What changed? They put me on 100 milligrams of Elavil, 20 milligrams of Paxil and 2 milligrams of Klonopin at bedtime. No more jaw problem. I had been clenching and grinding my teeth in my sleep and those drugs knocked me out for 12 hours straight every night, sleeping like the dead and I was no longer clenching my jaw in my sleep.

So then, what was the reason for clenching my jaw in my sleep. I was a stress wreck and not completely relaxing while I slept.

I think you certainly are right though in the sense that Fibromyalgia is not the final answer. It is a catch diagnoses for you have this and so do allot of others and we don't know why, but we have to call it something.

telula68
Regular Member


Date Joined Sep 2008
Total Posts : 56
   Posted 12/16/2008 9:57 PM (GMT -7)   
unfortunately for many of us we will never get past the point of fibro being a symptom of another disease. I am on medicaid and have been told that because medicaid does not pay that I will not be getting any beneficial treatment. I have had fibro for over 20 years now. I have been through the ringer and the end result of all those years of pain and endless doctor's visits have come to this. if there is an original disease causing the fibro I will likely never find out.
Until this "syndrome' or whatever they want to call it is taken seriously a true cause won't be found. The doctor says "you have fibromyalgia" and goes no further. That's the answer for them but it is still a question for us.

jewelrylady
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Date Joined Jun 2008
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   Posted 12/17/2008 1:17 AM (GMT -7)   
My Dr referred me to a dermatologist & I couldn't figure out why.  As it turns out she thought I had dermatomyositis.  Anyway, he turned out to be an older Dr who had spent most of his years in research of auto immune diseases in a large hospital.  He told me that researchers have the added benefit of watching a patient for many years.  Most Dr's only see a patient for a few years or until they feel they can't help them & refer them on to someone else or they just give up on them.(his words)  He said from all the data they received Fibro & Chronic Fatigue Syndrome are like the beginnings of an auto immune disease.  They found neither Fibro nor CFS ever stands along, or very seldom.  The life of the disease either stays the same or moves on into a auto immune disease or two or three.  In the end of the evolvement of the disease, everyone gets to a point of having MCTD.  Mixed Connective Tissue Disease or something similar to it.  It is an overlapping of 3 to 5 different auto immune diseases.  My daughter, Misty this year has been dx'd MCTD.  She is 33 & has had Fibro for most of her life & dx'd with RA.  She had quite a few surgeries before the age of 3.  She started complaining about all over body aches & pains about the age of 5 & has lived with it always.  So, for me, what he said makes sense, Fibro & CFS are auto immune diseases or the beginnings.  Hugs, Denise

 I have:  Fibromyalgia, CFS, Holt-Oram Syndrome, nasal allergies, depression

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren.


Grailhunter
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Date Joined Nov 2008
Total Posts : 159
   Posted 12/29/2008 3:38 PM (GMT -7)   
I brought this back up because, one, its a good post, and two, there is something that Jewelady added on the concept of Fibro and CFS being a auto immune disease, or the beginnings of one.

There is a post under Chronic Fatigue Syndrome I made on what makes me think, or at least lean toward the concept of Fbro and CFS being a disease process. It is essentialy saying this.

If you search back in the history of CFS, the first diagnosed cases were in Incline Village Nevada between 1978 and 1983 by a Dr. Cathcart MD. I believe there was 16 people diagnosed with having the same thing that would latter become known as CFS. Up until then, CFS probably existed, but this was the first time there was cosolidation in one location hitting a number of people.

From 1978 through 1983 I was working as a Plumber in Incline Village and I did hundreds, actualy thousands of sewer and drain cleaning calls where I was exposed to the waste of Incline residents.

about 18 years ago, 7 years after leaving Incline Village, I started coming down with my first symptoms of CFS. I would get out of bed completely dragging for days and it would take several hours of pushing myself, before my body would get going. Then I would be completely exhausted after about 6 hours of work. There was no logical reason for this. I was only 34 years old. I had always been in good shape. I had a good diet and had been taking good vitamin supplements my whole adult life.

about a year latter I started coming down with allot of aches and pains that seemed to migrate around allot, getting out of bed with headaches almost every morning.

Two years after that, I was totaly fatigued out all day, sick feeling all day and suffering at a level I could barely function. 6 months latter I completely crashed and burned.

Looking at the history of CFS and Fibro, where it was once a small problem effecting a small number of people, and adding in the fact I was a very healthy person that just happened to work in the epicenter of what seemed like a original outbreak of CFS, so much so that the original Doctors thought it might be contagious. It even got called the Yuppie Flu for awhile because it seemed to be mainly hitting upper middle class people. And now we look at it and Social Security Disability is estimating it is effecting millions.

I personaly, based on my own circumstances, and looking at how it has evolved to what I view as epidemic proportions, have a hard time not seeing this as having a root cause that is a disease process. I not only think it is a disease process, but I think it is something that at its core, long before it manifest with symptoms is a contagion of some kind. Why some people don't manifest symptoms, some do, some it stays fairly stable, some it progresses and some it progresses to all kinds of disorders, I don't have a clue, except that maybe it simply depends on the individuals immune system and what else they get exposed to.

Its just me in this one circumstance, but in my gut I have felt for a number of years that the reason I have Fibro and CFS today is what I did for work. I exposed my immune system to fighting off probably everything you could imagine, and somewhere in all of that I picked up what sets this off that the body can't get rid of, and my immune system had to fight with that on top of everything else I was throwing at it.

I know its a myopic viewpoint of a widespread problem, but I simply can't get past the fact that I spent the first 15 years of my adult life so healthy I never caught colds, or flu or had to take a single sick day off, exposed myself to every kind of bacteria you can imagine in my line of work, and then at a very specific point in time started a slide I could never recover from. It just doesn't add up for me.

I have tried addressing this as a immune system problem in the past, but if that is the core of the problem, I think once you pile enough on top of it, you wouldn't know if your getting anywhere with it or not. And I think probably any potential cure for it is probably going to have to be specificaly targeted at the core issue.

So, I personaly agree with Jewelady. My feeling is its either autoimmune, or autoimmune in the making.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.


tyno3
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Date Joined May 2008
Total Posts : 1081
   Posted 12/29/2008 5:11 PM (GMT -7)   

I'm with Jewelrylady and the plumber/autoimmune makes so much sense. OK: As a child I was in school 1/2 the time. The remainder I was in bed, sick. It was diagnosed as strep throat, and I was constantly on Antibiotics. Don;t ask me how this happened, but I had my tonsils removed twice. They said they either grew back or more likely, tissue was missed the first time around. I had a breakout of hugh hives one summer in my twenties. I had a temperature of 105, I was hallucinating. I saw an internist who said "probably toxic shock". 

Within a year I had a "butterfly rash on my face. This is highly indicative of auto-immune, and, I developed Hashimoto's Thyroiditis. where your immune system tags your thyroid as "foreign tissue". Finally, there's the delemma of the missing ovary. When I was going into surgery, the gynecologist spoke with me about the possibility I might have to have two ovaries removed, but he'd only do so if absolutely necessary. After the operation, he saw me again and said, we spared one ovary, that way you're not thrust into instant menopause. I thought "great, I guess. Last winter I was having severe pain right side. I mentioned to PCP and he said ultrasound. Great. Result: No ovarian tissue present, either left or right. Huh?


Hypothyroidism, Fibromyalgia, Facet Joint Syndrome, High Blood Pressure, menopause, Migraines, Chest Pain, Anxiety and Depression/BiPolar II
Synthyroid .075mg., estradiol.5 mgs., Amyltriptilene, 100mgs, bedtime, Tylenol 3 PRN (six-eight, daily), Valium 7.5mgs. daily prn. Flexeril, prn (not so helpful), Zoloft,150mgs., Zomig approx. 12 per month, prn., Meds for High Blood Pressure, vary.


Grailhunter
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Date Joined Nov 2008
Total Posts : 159
   Posted 12/29/2008 6:32 PM (GMT -7)   
You gave me a idea for a just for giggles Poll. I wonder what percentage of people with CFS/Fibro have had their tonsils removed. ENT Doctors yank them no problem. But allot of Doctors hesitate to recommend pulling them out unless they are causing serious problems because removing them weakens the immune system. Ask a Naturopath what causes a over-reactive immune system to start attacking the body and he will say its because the immune system is severely weakened.

Kinda funny mine were pulled after two infections, and I now have lympodenopathy on one lymph gland before the Trachea, 3 Lymph nodes in my lungs, one of them a major one, and they haven't even looked anywhere else. And when I have had lymph drainage massage, the therapist says my lymph fluid feels like she is pushing sludge, and the lymph system is preaty much the cornerstone of your immune system.

That basicaly means my bodies lymph system is fighting infections, and inflaming lymph nodes and depositing granulomas like they do with Sarcodosis. They have never tested for Sarcodosis or found what it is that calcifies my lymph nodes.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 12/29/2008 6:46 PM (GMT -7)   
I also agree that there is an autoimmune link to Fibromyalgia.  Most people with Lupus have Fibro as well. Terrible combination to have. shakehead
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Statgeek
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Date Joined Jul 2008
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   Posted 12/29/2008 7:44 PM (GMT -7)   
Grail, that would be a good poll to do. I was also a very sick child and had to take gammoglobulin shots to get my immune system fighting infections long enough so they could take my tonsils out. During one year of school I missed 3 or 4 months straight. I had pneumonia several times, too. But when I reached 6th or 7th grade, I was healthy and haven't been sick like that ever since. I wonder if it is related to the fibro problem, now. I also wonder how many fibro people have the butterfly rash, or is it just indicative of lupus.
Sue

Jeannie143
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Date Joined Apr 2004
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   Posted 12/29/2008 10:23 PM (GMT -7)   
Gee, I'm gonna throw a monkey wrench in the whole thing and give you some background that uncorrelates all your research. First, fibro used to be referred to as "articulating rheumatism" in the 1800's and has been referred to in medical literature for over 100 years under several different names. It's not new, it's just that it affects more females than males and up until the last 20 years 'female complaints' went ignored by the majority of the (male!) medical profession.

I personally have had symptoms of fibro for as long as I can remember at age three. And, to top it off I have no problems sleeping, can sleep 14 hours straight and get up for two hours then take a four hour nap. I have tender points, aches, traveling areas of tendon shortening, pain in my entire body... all the time... every day to some degree and have always had pain all of my life... I'm going to go for the bacterial infection in the leukocytes theory that has been presented... Or gremlins... Yeah! I believe it's gremlins! I've gotten past worrying about the how's and why's and am working on the coping part. To me, it doesnt' make much difference anyway. Ain't none of us gonna get out alive anyway. (Sorry to be such a downer but I've been doing this a looooonnnggg time.)
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


donnaeil
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Date Joined Jun 2006
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   Posted 12/29/2008 10:59 PM (GMT -7)   
I guess I am one of the only people who does not believe fibro is an auto immune disease, sorry folks.

Donnaeil

Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 12/30/2008 12:21 AM (GMT -7)   
Sorry Jeanie, but I am completely missing how that un does anything. It having a bunch of different names over the centuries doesn't change anything. You having a bunch of different symptoms doesn't change anything. Having it since 3 might seem preaty odd, but CMV, one of the main virus's they are blaming is mainly a baby virus. Your female complaint theory I can't refute, but if you took out all of the females that have it in the US right now that would reduce the numbers down to just a half a million men instead. When a single disorder, disease, whatever has so many applicants for disability that if they approved them all it would bankrupt disability, versus almost unseen 30 years ago, thats a epidemic.

MS is MS and it probably has existed forever also, and was probably recognized by a bunch of different names also, and its quite variable in symptoms, intensities, progression rates, and its still MS, and its considered a autoimmune disease and 56 percent of MS patients have active virus loads on the same virus's some researchers think cause CFIDS and 36 percent of CFIDS sufferers have active phases of those virus's at any one time also. The percentage of healthy controls with active virus loads is zero. And as far as names go, what is it really, CFS, Fibro, CFIDS, ME, Chronic Epstein Barr, all one fundamentaly close problem showing different faces or a bunch of totaly different things? The names are irrelevent, and the symptoms are so varied there is no way to pin down whether its one fundamental issue in different stages, or different issues.

What I did say is that I was sure it existed before as something else before 1978. I was saying that Incline Village in 1978 was just the first recognized cluster of CFIDS, and I think that is preaty varefiable with a search on "Incline Village Chronic Fatigue". Chronic Fatigue does show up allot in clusters and families, and Fibromyalgia also shows up in clusters and families. I personaly can't differetiate the two except some have more fatigue and some have more pain.

Of course what I am reading is being refered to here as Chronic Fatigue Syndrome and the belief is that a single or combinations of Virus's are responsible, EBV, CMV, HHV-6 and that a active case of any or all of them could be responsible. And it was saying that on CMV alone 36 percent of CFS people show active. The percentage of people with CFS that are active with one, a couple or all of these virus's at one time is quite high. On their healthy controls it was zero active. Those numbers aren't lieing. CFS either makes you vulnerable to active phases of the Virus's, or the Virus's has to have something to do with the CFS. One third of CFS people with Active virus status versus zero controls is not a accident. What it looks like is a flare. Get hit with something resembling a strong case of the Flu or a mild case of Mono every time you turn around and your not going to feel so great inbetween the flares either. And what would that do to a person over a period of years?

It was like 56 percent of MS people were active with CMV. MS is questionably considered a autoimmune disease. So is CFIDS. They are really after this virus because they think its the one that is causing MS. I worked for a Roto Rooter company in Colorado, that the owner had done sewer and drain cleaning and septic pumping for about 20 years and came down with the most aggresive case of MS the Doctors had ever seen. He went from healthy to a wheelchair full time in 2 years and died in 3 more. Sewer and drain cleaning was either the cause or a huge coincidence.

Since preaty much all CFS people have a degree of fibro symptoms and all Fibromites have some level of CFS, I don't personaly draw the distinction. I see them as the same thing in different stages.

One of the things that impressed me personaly was that all of the Virus's implicated are transmitted by close contact, bodily fluid exchange. So, essentialy, that would make Chronic Fatigue Syndrome as technicaly contagious, if virus's are behind it, and whether or not the person developed CFS would depend on the individuals immune systems ability to keep those Virus's in latent stage.

But I also like the Bacteria idea. I was exposed to lots more bacteria then virus's.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.

Missing Key Value : en-US, 736


Grailhunter
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Date Joined Nov 2008
Total Posts : 159
   Posted 12/30/2008 12:19 PM (GMT -7)   
I know I have beat this to death and I promise I will leave it alone, but the question of autoimmune or not autoimmune on Fibromyalgia is missing what is a very logical concept to me. I am not a Doctor and not a researcher, but my whole working career was as a mechanical repairman and I was very good at it, Obsessively, perfectionist, good at it. Whenever your dealing with a system that has a couple, or numerous things going wrong at the same time, it will almost always point to a central cause of all of them. You don't run around trying to fix each malfunction. You track it back to the single cause, fix that and all of the problems go to functioning normaly.

As has been pointed out by a number of members, many of them have autoimmune diseases. What it really looks like to me is that the autoimmune diseases in some cases came on in front of the Fibro, and some came after the Fibro, but they do seldom stand alone. I don't have a DX for a autoimmune disease. What I do have is a currently unknown repeating inflammatory infections that are attacking my lymph nodes for years. In many ways it resembles Sarcodosis, but it doesn't have the big range of problems.

The point is that allot of people with Fibro and CFS also having autoimmune diseases coming in before or after is a red flag that the immune system already has the problem on a core level that makes the person susceptible to both. This is not a new or novel idea I just thought up on my own. I am simply repeating the concepts of top researchers that a number of these autoimmune diseases and Fibromyalgia look like they have a common cause.

In itself, that would not make Fibro a autoimmune disease. It would point to the concept that something common is going on with the immune system that makes a person vulnerable to developing autoimmune diseases, and Fibro.

I am going to pursue this idea at least far enough that I go to my Doctor tomorrow and have him run blood test that show the antibody levels on the 3 main viruses they are implicating in this theory. Just having the antibodies don't mean much since by the time you hit 40 you probably have one, two or all of them. But if my suspicions are correct, I will have all 3 and at least 1 or 2 will have high antibody levels.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.


Jokat
Regular Member


Date Joined Feb 2008
Total Posts : 278
   Posted 12/30/2008 1:51 PM (GMT -7)   
Never had tonsils out
 
There are alot of number, percentages and names being tossed around and I do not know if any of them mean anything. I certainly encourage everyone to educate themselves and their physicians. It is through this process that someone will find what it takes to end my pain and fatigue.
 
I am fairly young and a Fibro rookie still; I will continue to look at the how's and why's and contiue to question the meds and therapy diagnosed.
 
I do not have any autoimmune diseases and hope to not ever have any..... I will continue to work, play, and learn.
One day someone asking why or how will find the answer and I will be a happier man because of it.
 
 
 
JoKat
 
Fibro is a life sentence, but not a death sentence.
Fibro since 2005


vestabula
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Date Joined Nov 2008
Total Posts : 2855
   Posted 12/30/2008 4:54 PM (GMT -7)   

I seem to see more of  a correlation between anxiety/depression disorders and fibro then autoimmune diseases.  The very first Rhuemy I went to told me that that aching, sickening pain we all feel is lactic acid crystals that build up in our muscle tissue...they are like little shards of glass that come from being stressed and tense al the time, and that's why light massage can help relieve the pain.  I don't know if this is true, but I see many of us on this forum also have anxiety issues.  Again, I am not a doctor but I play one on T.V.!

donna


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium


Grailhunter
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Date Joined Nov 2008
Total Posts : 159
   Posted 12/30/2008 7:08 PM (GMT -7)   
Jokat

In chronic illness, where people are frequently both desperate and vulnerable, a attitude of buyer beware is probably a really good idea. I congratulate you! With the Internet at our fingertips your probably going to find yourself weeding through a huge pile of rocks for every pearl. And most of those rocks have a high price tag.

Vestabula

Your right also. Huge correlation on anxiety and depression. I could probably write a thesis on why, but I am giving up the lecture circuit. If your on House's show though, I could use a reference for a bit part or even a extra. I love that show. I can't stand a unsolved puzzle anymore then House can, especialy when it effects me too.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.


K9
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Date Joined Nov 2008
Total Posts : 263
   Posted 12/30/2008 7:40 PM (GMT -7)   
This is an interesting discussion, although not a very scientific one. It seems the scientific community isn't much help anyway.

I've never had my tonsils out.
I don't have any other disease or disorder - I'm not depressed or anxious.
But my immune system SUCKED SALMON as a child - I had an infected EVERYTHING all the time. Took more antibiotics than most kids drink milk. This continued through to mastitis while nursing and then chronic sinus infections and tooth abcesses. THEN at age 37 I got breast cancer. I got healthy at that time, and never looked back. Enjoyed 12 years of good health, then this darn thing shows up. But I was under INCREDIBLE stress for a year before I got it. Ridiculous sh** happened to me and my family. Plus my job is high-stress anyway.

I enjoyed this thread, btw. Good food for thought.
I have Fibromyalgia, and nothing else!
I take Lyrica 225 mg/day and Tramadol (150mg time-released)


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 12/30/2008 8:38 PM (GMT -7)   
I agree, this is a great discussion. I had my tonsils removed when I was 8 years old.  I was "the carrier" of strep.  I was infecting everyone around me, but I never got sick!!  As soon as my tonsils were removed, everyone around me got better, and I got worse.....By the time I was a teenager, I had a lot of issues which we can now say was the start of my Lupus or Fibro or both.
 
I find it very intruiging to learn how the HPA axis of the brain is always at a malfunction in those with Fibro. The HPA axis being the Hypothalmus, Pituitary Gland, and the Adrenals (on the kidneys).  When those don't communicate properly, you get all the Fibro symptoms.  So what made this axis malfunction in the first place?  And why all the weird symptoms and problems? 
 
Grailhunter, you and I have had discussions about the HPA axis. I'm glad someone else knows about this. Someday we'll know the cause.  That's my first question to God when I see him! smilewinkgrin
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 12/31/2008 12:17 PM (GMT -7)   
I think its not a very specific discussion because were trying to piece together whether Fibro is a disease itself, or a bunch of symptoms of another disease process, or as Ginny pointed out the HPA being messed up. I know the HPA is messed up on me. Give me muscle relaxers, pain killers, and anti-anxiety meds which would slow down the HPA and I am stress free, anxiety free, pain free and so tired I can barely make it through the day. Give me anti-depressents that speed up the HPA and I am a nervous wreck moving constantly from morning to night and hurting everywhere. Give me Bi-Polar mood stabilizers, (they tried that too) and I am so depressed I don't care about anything anymore.

So the thread discussion is all over the place because were trying to find a commonality that points somewhere, which is a task all the Doctors, researchers there are working on it haven't accomplished yet. I persoaly like ideas though whether it actualy solves anything or not. And I would rather get my ideas from people in a similar boat then the 10,000 websites claiming they know something and wanting to sell me the "cure".

This is my not getting out of bed much day by the way. Since tomorrow is the 1st and I don't have to work that day either, I may not get up much tomorrow either. 48 hours of straight rest will usualy buy me one good day afterward.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.


Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 1/1/2009 12:21 PM (GMT -7)   
Since the thread is all over the place anyhow I figured I may as well add this one. The effect of stress on immune response and what types of personalty responses to that stress had what effect on the immune system and Cortisol levels. I will leave out the numbers on the test, but they were testing how high antibody levels would go on Epstein Barr, and Cortisol levels according to whether the person was repressive, attempting to fight their stress by trying to be emotionaly void to it, or whether they expressed their stress, or whether they were sympathetic to the stress.

The results were that the repressive personalites did the worst, that is me by the way. We try to lock away our stress, not express it, not even recognize it if possible, and this in turn creates a low level chronic stress of its own. It literaly trains the brain to put out internal chronic stress, which you of course try to repress also. I became this way, I know, by being raised by a raging alchoholic alone that put you under high chronic stress, and then made your life even more miserable if you didn't keep your mouth shut. There was absolutely no one in my life I could complain to. I always wondered how he managed to live to a ripe old age getting drunk 5 nights a week, smoking Pall Mall reds for 55 years, and was still keeping up with 30 year olds in hard work when he was 65. Now I know. He found a way to be very expressive.

The second worst was the sympathizers. I have no idea what that means. Whether its sympathizing with your own stress or others. ???

The ones that did the best were the ones that would express what was stressing them. Just being able to write it down had a positive effect on immune response.

I wonder if this might have anything to do with the ratio of women to men on Fibro since like Jeanie said, female complaints were ignored. Even today the ratio is way off, where many men work and think they are done and women are expected to absorb the stress and suck it up.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.

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