Dysautonomia 101 - Dysautonomia For Dummies

I’m no medical expert, but I’ve certainly been diagnosed twice by one, which is perhaps why many people have continued to email me or comment under my other Dsyautonomia posts asking for my help and advice.  I realized that I should help them by writing a detailed, yet easy Dsyautonomia post to quickly educate them. 

When I was diagnosed with Dysautonomia in 2009, I spent weeks gathering information educate myself.  I was completely overwhelmed by the lack of easy information and resources out there.  For instance, my public library, one of the best in the state, only had one book that had two small chapters on my condition, and there were only a few medical books in the entire state of Michigan I could borrow and read about the condition.  Once I got the book, it took another book to help decipher it.  No one I knew had heard of my condition, not even my former primary care physician, who eventually remembered “after a few days” hearing about it in med school.  Luckily for me, I’m a hell of a researcher, and I pulled together a lot of information myself.  I read a textbook by one of the few men doing research in the US on Dysautonomia, and as luck would have it, I was also diagnosed at Mayo Clinic by the same man – one of America’s leading experts on Dysautonomia – Dr. Philip Low.  So, between his research, handouts, and my own internet research, I’m fairly certain what I share with you is fairly good information and advice.  Trust me, if you have just been diagnosed with Dysautonomia, I know how hard your life has been for the past few years just trying to get diagnosed.  I know what you faced and encountered along the way.  You could use a cheat sheet on the condition, and I’m happy to give you mine, which I plan on updating from time to time.

I just got this t-shirt, isn’t it great?  I can’t wait to wear it tomorrow when I work out and run errands.

What is Dysautonomia:

First of all, you may be asking yourself, what the heck is Dsyautonomia?  I’m not going to get into the specifics of it, simply put, Dysautonomia is a malfunctioning of the Autonomic Nervous System, or the unconscious bodily functions - your heart rate, digestion, breathing, blood pressure, pulse, body temperature, sweating, bowel function and sleep patterns.  Dsyautonomia can also be refered to as Autonomic Neuropathy.  Think of it this way – Dysautonomia can interrupt the inner workings of the human body.  So, just like a driver of a faulty Toyota Camry, we are not in control and we are at the mercy of our vehicles.

Brief History of Dysautonomia:

Back in the old days, it was known by another name, Neurasthenia, and basically, the condition forced sufferers to be bedridden, and occasionally die because of their weak nervous systems.  This is why “fainting couches” were created in the first place. 

What causes Dysautonomia:

Marfan Syndrome

Ehlers-Danlos Syndrome (EDS)

Collagen Imperfecta

Shy-Drager Syndrome

Genetics, as in the case of the Jewish-based Familial Dysautonomia

Pregnancy

Autoimmune Diseases

Parkinson’s Disease

Brain Injury

Physical Trauma

Deconditioning

Viral Illnesses

Chemical/Toxin Exposures

Breast implant surgery

Extreme Stress

*Dysautonomias caused by viral infections, toxic exposures, or trauma often have a rather sudden onset.

Types of Dysautonomia:

There are several types of Dysautonomia, and I am blessed to have more than one form, which I’ve highlighted for you in bold.

Familial Dysautonomia (FD) – The rarest and most deadly of the disease.

Postural Orthostatic Tachycardia Syndrome (POTS)

Orthostatic Intolerance (OI)

Pure Autonomic Failure (PAF) [also known as Bradbury-Eggleston Syndrome or Orthostatic Hypotension (OH)]

Mitral Valve Prolapse (MVP)

Vasovagal or Neurocardiogenic Syncope (NCS) (I have near-Syncopy, as I rarely pass out.)

Multiple Systems Atrophy (MSA)

Gulf War Syndrome

Fibromyalgia

Chronic Fatigue Syndrome (CFS)

Panic Attacks

Anxiety

Inappropriate Sinus Tachycardia (IST)

Irritable Bowel Syndrome (IBS)

Symptoms of Dysautonomia:

Light-Headedness

Dizziness

Vertigo

Syncope/Fainting

Blurred Vision

Numbness/Tingling

Depression

Headaches

Migraines

Myofascial Pain

Malaise

Salt Cravings

Pallor

Facial Flushing

Nerve Pain

Trouble Breathing

Increased Emotions

Urinary Problems

Sexual Difficulties

High or low blood pressure

High or low pulse (I’ve seen mine as low as 42, but I’m normally at 60.)

Body temperature regulation

Sweating Abnormalities

Difficulty Digesting Food

Bloating

Constipation

Diarrhea

Nausea

Acid Reflux

Chest Pain

Seizures

Lack of Low Blood Sugar/Hypoglycemia Warning Signs

Sleep pattern problems

Vision problems

Sluggish Pupil Reaction – Difficult to drive at night.

Exercise Intolerance

Aches and Pains

Non-mentally induced anxiety and panic

Brain Fog/Mental Confusion

Chills

Intolerance to heat or cold

Noise Sensitivity

Light Sensitivity

Low Back Pain

Weight Gain/Loss

Detachment from Surroundings

Easily over-stimulated

 Tests/Diagnosis:

Tilt-Table Test

Electromyography (EMG) (Hurts like hell, don’t let them trick you and tell you it feels like a pinch)

Quantitative Sudomotor Axon Reflex Test (QSART)

Breathing Tests

Gastrointestinal Tests

Thermoregulatory Sweat Test (My favorite test of all – you go into a sweat tent, naked, get painted with gold powder like the Bond Girl, and they take picture of you (Certain parts are covered with a wash cloth) and you come out an eternity later looking like a fat, sweaty Barney because you’ve turned purple.  I had to drink hot liquids before the test, and 104 minutes later, they had raised my temperature to only 100.4 or something near that.  When you have a heart intolerance this is actually tortuous.  Plus I had purple coming out of everywhere for two days.

Standard Medical Treatment:

Midodrine – My Neurologist prescribed this, but my Cardiologist didn’t want me to take it, as he feared it would give me a heart attack, so I’ve never tried it.  It is the drug of choice.

Fludrocortison

Somatostatin

Erythropoietin

Cheap Treatment:

If you are like me, a patient with Pure Autonomic Failure (PAF/OH), you can treat your symptoms on the cheap:  I have used all of the following, and I barely feel dizzy, unless I walk up or down stairs. 

Compression stockings

Drinking water – I sip water constantly to increase my blood pressure.

Vyvanse – Raises blood pressure and helps with the brain fog.

Exercise – The more you do it, the better your body feels.  I wish the same were true for my headaches.

Eating salt – I prefer real bacon bits on my whole wheat English Muffins.

Additional Treatment:

Physical therapy

Yoga

Tai-Chi

Massage therapy

Various anti-anxiety pills and antidepressants

What to avoid when you have Dysautonomia:

Over the counter sinus and cold medications

Caffeine

Chocolate (yeah, right)

Stress (yeah, right)

Anything that drops blood volume - becoming anemic, sudden blood loss, donating blood

Prolonged Surgeries

Certain types of Anesthesia

Alcohol

Why do I personally have Dysautonomia?

I have a rare genetic connective tissue disorder that involves a loss of collagen according to the doctors at Mayo Clinic.  There is no cure for my genetic collagen disease and my doctors can only treat my symptoms.  Since all of my tissues are weak, I have all sorts of problems that at times can be way worse than my Dysautonomia symptoms.  My eyes suck.  My joint are out of whack and I once injured my neck in my 20s just laughing really hard while shaking my head.  I already have lost two inches of height in ten years due to this loss of collagen in my body as it has caused Degenerative Joint Disease.  As of 2008, seven of my disks were torn, herniated, or bulged.  I have regurgitation in two of my four heart valves, but thankfully only have PAC’s currently.  Mayo also diagnosed me with a bleeding disorder but I haven’t seen a specialist for it, nor do I care to.  I’m not supposed to have surgeries at all, as my surgical scars stretch thin over time, and I’ve had the one on my leg burst open once.  I’m hoping the 11 staples my gyno put in last summer to remove my uterus (that had split in half and had fallen deep into my pelvic bone) will hold the cut across my abdomen down the road.  Don’t even get me started on my teeth, because I can’t even “go there” right now.  And, for an interesting side note, one of the connective tissue diseases that causes Dysautonomia is so bad that they actually abort 85% of all babies who are found to have it.  My own father is legally blind, and both of his parents died blind.  My dad and his father also had torn heart valves and had their heart valves replaced in their early 50’s.  My mother is partially deaf and (is supposed to) wear hearing aids in both her ears.  She has similar spine problems as I do, but does not go to the doctor since she is still living in the ghetto, poor, and unemployed.  Her teeth are crumbling out of her mouth, she is balding horribly, and will literally have a heart attacks if either one of those things happens to me one day.  Still, despite all this crap, I still manage to exercise, and volunteer.  I was working full-time until I lost my job six months ago due to the economy.  I find that “mind over matter” is the thing that helps me the most.  I tell myself shut up, get moving, too bad, whatever it takes to live my life as best as I can.  I may be exhausted and in pain, but I’m still out there, trying to live life, because I’m not letting this stupid conditions get the best of me.  My best advise is - Do not let it get the best of you. 

Share your story:

I would love to hear your story, please introduce yourself and tell us your story, what helps, and what hasn’t so far.  Feel free to come here and vent, rant, scream, whatever.  We all have been there, and we understand to a great degree what you have been through … because we have been through it as well.  Nothing made me happier than getting hundreds of emails over the past year from people who told me they felt crazy or were suspected of being crazy because of all they had been through with Dysautonomia.  You are never alone here! 

A final word from The Girl from the Ghetto:

Please feel free to link to this post if you suffer from (Or just want to write about) Dysautonomia if you are a blogger, or Twitter or Facebook user.  I am very happy to help anyone, because I know how badly it sucks to almost always feel AWFUL.  I spent hours writing this post and I do not want to see my post show up in full or in pieces on your own blog, especially those blogs run for money or utilizing ads.  I find that form of plagiarism highly offensive, especially when it comes to health-related topics.  Also, please do not spam comment here and insert links to your vitamin websites or for any type of cardiac ablation procedures.  Save us both energy and time, because neither of these are proven to help, so I won’t be approving your comments.

[Via http://thegirlfromtheghetto.wordpress.com]

spring cleaning

So today me and D decided to take some donations to a thrift store that’s close to us, the one I’ve talked about before.  Their profits go to a local women’s shelter so I like buying there.  Plus, they have the best quality for price when it comes to clothes.  We looked at some clothes and I found a pair of shorts woot! They’re mens, but that’s alright with me.  LOL D didn’t find anything After that we went to the mall and peeked in at Spencer’s and Hot Topic.  It still amazes me how Spencer’s is still exactly the same as it was when I was younger, and also how much it’s changed.  It’s still the same in that it’s quite alternative, etc.  It’s different in that they have a whole section of sex toys! O_O

Me and D are starting to buckle down on eating healthier. Yes, I’m saying this as I drink a Coke and am eating Jelly Beans LOL But, we have cut down our eating out a ton.  It helps that the internet is working at home again so we’re not needing to go out and about to find open wifi anymore.  We also are strong believers in rewarding ourselves, and that complete restriction is not the way to go.

Lately I’ve been really down on myself about my weight and body image and all that.  I’m not sure why.  D obviously is attracted to me and my weight is not an issue for him.  He accepts me how I am.  I think it’s frustrating for me that I’ve found so many things that don’t work in the long term, and really nothing that has.  I’ve lost a little weight now, since I’ve started walking, I know I have.  I’ve also cut out a lot of junk food and a lot of crap food; processed, boxed etc, as we just don’t eat that.  D’s pretty down on himself  as well.  Since he hasn’t been working he hasn’t been walking or doing anything, so he’s put on about 10lbs over the past couple months

My fibro is thankfully back under control today, I was in so much pain the last couple of days, and a lot of the worst part is that it’s so draining, physically and emotionally.  Last night D I could barely stand for D to touch me.  It was horrible.  Thankfully it’s all over now and believe you me, he’ll certainly be touching me later!!!

We got a lot of cleaning done today.  D hand scrubbed out the oven and I got the patio cleaned up from all the winter nasti-ness.  We’re getting the grill cleaned up as well, it’s been a long…long time since that’s experienced any sort of up-keep.  Our bathtub is currently full of the grates from both the grill and oven LOL

I also got a chemical burn from the oven cleaning stuff.  We think it’s ‘cuz I probably also had another cleaner on my skin, from washing the outside of the patio doors and some of the grill.  So the combination decided to melt off some of my skin.  Oww!

Thankfully when I came out whining that my skin was melting D knew what to do. I’d never had a chemical burn before LOL We put some vinegar on it and that neutralized whatever was burning me. D figured it was lye.  OWW!

We’ve got a rump roast cooking in some black ale right now.  It smells so good in here… It’s about time to wash and cut up the potatoes and put those and the veggies in.  YUM! *licks lips*

That’s about it for now.  I know I’m blogging a lot earlier than I do *shrugs* Maybe I’ll blog again later, maybe I won’t.  I have a couple reviews to write up I may do later on.  But for now…th…the…theee….that’s all folks!!

[Via http://jesseebeth.wordpress.com]

Chapter 7 & 8 of "Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome” by Dr. Rodger Murphree

Part 3: Your Path to Healing – Chapter 7: Treating with Orthomolecular Medicine

(portions of this blog came from Dr. Rodger Murphree’s book)

Our body’s homeostatic mechanism, the HPA-axis, and in fact every cellular process, depends on the proper amount of essential nutrients.  The raw biochemical material that makes up our physical and mental being first originates from foods.  The entire process is amazing: macromolecules of carbohydrates, fats, and proteins are ingeniously used to provide the vitamins, minerals, essential fatty acids, enzymes, and amino acids to the body as it manufactures bone, muscle, organs, cells, hormones, enzymes, antibodies, white blood cells, neurotransmitters, and other life-sustaining elements.  We truly are what we eat.

The levels and interactions of vitamins, minerals, amino acids, and the essential fatty acids determine our state of health.  You would be dead in days without these essential nutrients.  They help determine every bodily function: sleep, levels of pain, energy, moods, immune function, digestion, elimination thyroid production, metabolism, and more.  Every cell in the body is dependent on having the right amounts and right interaction of these essential nutrients to work correctly.

What is Orthomolecular Medicine?

When we establish nutritional deficiencies, our health suffers.  Man-made chemicals (synthetic prescription drugs) can’t correct these deficiencies, but a nutritional-replacement therapeutic program can.  This is the very premise of orthomolecular medicine, which means, “right molecules in the right concentration.”

Synthetic drugs may be helpful at times, but they always have an inherent ability to cause harm.  Not only are nutrients such as vitamins, minerals, amino acids, and essential fatty acids un-harmful, the body depends on them for survival.

Vitamin and Mineral Supplements

Problems such as hormonal, vitamin, and mineral deficiencies can contribute to muscle pain and soreness.

Below is a sample list of essential nutrients and their contributions to the treatment of FMS and CFS:

• Vitamin E helps to relieve pain in CFS patients.  It can also improve nighttime leg cramps, which interfere with sleep.
• Vitamin C boosts the immune system by increasing natural-killer cells, B cells, and T cells.
• Magnesium and malic acid have been effective in relieving the symptoms of FMS.  Magnesium is essential to healthy muscle function, and working with malic acid, it increases cellular energy, reduces pain, and enhances immune function by increasing natural killer cells. 
• Inositol enhances the immune system by increasing natural-killer cells.
• Selenium supports the immune system by enhancing antibody production.
• Vitamin D regulates many immune functions.
• Amino Acids, such as glycine, serine, taurine, and tyrosine, are essential for the production of energy in the body and for brain function.
• Zinc supports the immune system by enhancing white-blood-cell activity and supporting healthy antigen-antibody binding.

Sadly, many of these nutrients are deficient in our society.  The facts are that most of our foods are processed, and therefore, the nutrients have been leeched out of them.  As a result 70% of the population is deficient in magnesium, 65% is deficient in zinc, 48% is deficient in calcium, and 56% is deficient in vitamin C.

It’s clear that everyone can benefit from taking a good multivitamin and mineral formula.  This daily habit reduces the incidence of heart disease, hear attack, stroke, glaucoma, macular degeneration, type-2 diabetes, senile dementia and various cancers.

But I already take a vitamin

You might be thinking, I’ve taken a vitamin for years, and I haven’t noticed a difference.  You probably haven’t been taking enough to even make a dent in your deficiencies.

Just a note:

Problems can occur with megavitamin or herbal therapy.  But if symptoms arise, reducing or stopping the therapy will almost always put an end to any side effects.  Working with a physician who specializes in vitamin, mineral or herbal therapies will usually help you avoid any negative effects in the first place.

Chapter 8: Your Stress-Coping Savings Account

We’re all born with a stress-coping “savings account” filled with chemicals – such as hormones, amino acids, and nutrients – that can be deposited and then withdrawn when needed.  Depending on our genes, some of us have large accounts and some of us have smaller ones.  The more stress we’re under, the more withdrawals we make.  If we make more withdrawals than deposits, we get overdrawn, and poor health quickly follows.  Individuals with fibromyalgia and/or CFS have bankrupted their stress-coping savings account.

Although some patients bankrupt their accounts with one overwhelming event, most experience a series of stressful events over the years.  These events typically involve stressful jobs, marriages, family dynamics, surgeries, illnesses, loss of a loved one, divorce, financial failure, etc.

FMS and CFS are the result of internal biochemical imbalances that manifest themselves as physical symptoms.  So in order to right the homeostatic system, you must correct the underlying biochemical problems.  Just like an onion, you peel away one layer at a time until you get to the core.

Layers if the onion (the book goes into detail for each item):

• Dysautonomia and the HPA Axis
• Hypothalamus Gland Dysfunction
• Dehydration
• Low levels of Human Growth Hormone
• Low levels of DHEA
• Low levels of Cortisol
• Low Ovarian and Testicular Function
• Hypothyroidism

The other layers of the onion (the book goes into detail for each item):

• Intestinal Permeability (Leaky Gut Syndrome)
• Malabsorption Syndrome
• The Liver and Detoxification
• Nutritional Deficiencies
• Parasites
• Food Allergies and Hypersensitivities
• Candida Yeast Syndrome/Intestinal Dysbiosis
• Trauma, Especially Neck Injuries
• Depression
• Infections
• Poor Sleep

The next chapter is: Chapter 9: Stress as a Catalyst for Illness

[Via http://fibro2010.wordpress.com]

Pain On The Brain?

As an Acupuncturist, I’m always raving about the benefits of Acupuncture treatment for most any health condition.  The balancing of hormones, stifling the common cold, elimination of acne, wrinkles and sun damage, immune support through cancer treatment… The list goes on and on.

Initially, most of us learn about the benefits of Acupuncture by way of pain relief.  Any type of pain, whether it be a recent ankle sprain or broken bone, arthritis, or the ever present, often debilitating pain of auto-immune disease can be alleviated by Acupuncture.

I often treat patients with Diabetes, Rheumatoid Arthritis, Fibromyalgia, Chronic Fatigue, and a spinal disorder known as Ankylosingspondylitis, a condition in which the spinal cord slowly begins to fuse.  Diabetes patients often experience peripheral neuropathy, a painful, burning, tingling disorder that reacts quite well to Acupuncture treatment.  Rheumatoid Arthritis and Fibromyalgia are debilitating auto-immune imbalances which not only cause excruciating pain, but an almost oppressive amount of fatigue.  All of these disorders cause tremendous pain and suffering for their victims.  Thanks to Acupuncture, there is a natural solution available that can certainly enable a person to proceed with a happy, healthy life again.

“How the heck does Acupuncture work to treat pain, anyway?” is a question asked repeatedly in my clinic.  Well, it is quite mysterious.  There are many theories out there.  What we DO know is that the Acupuncture meridians (energetic pathways that pass through each of our body’s organs) are detectible.  We know that when these pathways are weakened or blocked, dis-ease persists.

One British experiment utilizing brain imaging has led to some intriguing discoveries.  What they have proven is that Acupuncture actually raises your pain threshold.  Sufferers of Fibromyalgia and Chronic Fatigue have a very low pain threshold, due to the disease.  In this experiment, the researchers used magnetoencephalography or MEG (brain scans with magnets similar to an MRI) to observe that Acupuncture actually deactivated part of the brain’s pain matrix!

Other studies prove that Acupuncture literally blocks the hormones in the body, which cause us to suffer from pain!

~

From a March 17, 2005 Article in Science Journal: “Pelvic girdle pain is a common complaint among pregnant women worldwide, but no cure exists.

Researchers in Sweden identified 386 pregnant women with pelvic girdle pain. Women were randomly divided into three groups; one received standard treatment (a pelvic belt and a home exercise programme), another received standard treatment plus acupuncture, and the third received standard treatment plus stabilising exercises to improve mobility and strength.

Pain levels were recorded every morning and evening using a recognised scale and all women were assessed by an independent examiner at the end of the treatment period.

After treatment, both the acupuncture group and the stabilising exercise group had less pain than the standard group in the morning and in the evening. Reduction of pelvic girdle pain as assessed by the independent examiner was greatest in the acupuncture group.

Acupuncture or stabilising exercises as an adjunct to standard treatment offers clear clinical advantages over standard treatment alone for reduction of pain in pregnant women with pelvic girdle pain, say the authors.

Acupuncture was superior to stabilising exercises in this study, they conclude.

Adapted from materials provided by British Medical Journal.

~

Is pain in the brain?  Yes, as well as the affected area of concern, which is displayed as deficiency (as in auto-immune cases) or as stagnation from physical injury.  Pain is registered in the brain; extremely perceptible to some and almost not at all for others.

Acupuncture is an intricate, yet surprisingly simple therapeutic system.  Intricate, where the treatment communicates with every organ and tissue in our body. Yet, simple, as Acupuncture can only bring about a constant state of homeostasis.  Balance. The common denominator in all of these systems is that they all communicate with the great pain receptor… The brain.

[Via http://zenredhead.wordpress.com]

this is fibromyalgia. this is my reality.

Re-posted from my facebook notes.

I have been getting lots of questions on what it means to have fibromyalgia syndrome, or FMS or FM for short. I thought I’d take the opportunity to write a few notes about FMS, what it is like having it, and what you can do to support those you know who have it.

WHAT IS FMS?

There is still a lot of research going on, but it is “a disorder of central processing with neuroendocrine/neurotransmitter dysregulation.” Basically this means a person with FMS has a central nervous system that processes pain and other sensations differently from most people. Research is also finding “increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan, and abnormalities in cytokine function.”

WHAT IS IT LIKE TO HAVE FMS? YOU LOOK FINE.

Everyone is different, but here’s how you might be able to imagine it. Think of a time you were in the most unbearable pain of your life. Dial it down a few notches. Then imagine having that pain every day, all day, in at least one part of your body, normally a muscle group. It may be in a different place from day to day, but it doesn’t go away so it eventually exhausts you, which is a major bummer because FMS already messes up your sleep cycle. Without restorative sleep and with being in pain most of the time, your brain goes into a “fog” that causes you to forget things, be dizzy a lot, mix up your words, and have a terribly difficult time concentrating on anything. Emotional breakdowns are inevitable and you have to consciously fight every minute of every day to maintain a positive attitude.

It gets even better. Sometimes you also have debilitating migraines or wake up in the night with your limbs numb. Sometimes you have “pins and needles” in your hands or feet. Sometimes the ringing in your ears gets so bad you can’t hear. Sometimes you have to wrap yourself in a blanket in an air-conditioned room because you’re so cold.

HOW DID YOU GET IT?

Who knows. There are a lot of studies trying to figure this out. Basically, no one really knows why some people get it and others don’t. They think there may be a genetic link. For some people FMS comes on slowly. Normally there is a “trigger” of some sort like an illness, injury, or some other trauma to the body.

WHAT ELSE DOES IT AFFECT?

Among other things:

- the ability to handle stress like most people

- the ability to work “normal” hours, or work at all for some

- it takes a LOT of time to take care of yourself and you often feel guilty about it because it means you can’t take care of others

- it takes you longer than a normal person to wake up and get ready in the morning because of the pain and stiffness

- you can’t really “commit” to being anywhere because you don’t know how you might feel that day

- sometimes you can’t go places everyone else can (for instance, I can’t be anywhere near cigarette smoke or spend much time around people whose clothes/hair smell like smoke)

- the way people treat you; some don’t realize (or care) that you need a little extra grace and patience from them

- you get tired of talking about the way you feel

- you have to tell people you’re never going to “feel better soon”

WHAT CAN YOU DO ABOUT IT?

There are a few FDA approved meds out there. For me, I’ve made the decision recently to stop taking the one I was on, because there isn’t strong evidence that it won’t affect a fetus and we want to have kids soon. Warm water therapy, getting plenty of sun, and trying to stay as warm as possible at all times can help. There is also a fine balance that must be struck between too much exercise and too little. I take a cocktail of about 14 vitamins every day to, among other things, try to help my adrenal glands with cortisol production and hope that one day I will have some energy help from that. Some people have found that eating a specific diet helps.

There is no cure for FMS.

WHAT CAN WE DO TO HELP YOU?

-Pray for me. A lot.

-Champion me. Help me to see my potential and remind me of my dreams. When I’m in a bad FMS flare (like I am now), it is really easy to forget about the things I want to do and be.

-Care about me, but try not to pity me. I am still capable of doing a lot of what I want to do. There may come a day when I can’t do much of anything, so for now I want to be given all the opportunities possible.

-Extend me a little more grace and patience than you might for “normal” people.

-Forgive me. I may get into moods that will really annoy you or do things that will disappoint you. I may have to say no to you a lot. Please realize that I only have so much energy to go around, and I HATE it when I have to spend that energy on myself. You can help me by not adding to that guilt.

For more information visit the National Fibromyalgia Association at www.fmaware.org.

[Via http://ashleylinne.wordpress.com]

Venting a Bit: Thinking Myself Healthy

If I could have written this while driving it would be much better as my mind was flying about the things I wanted to say. Alas I’ve likely forgotten half of them but will try to coherently put something down.

I’ve dealt with invisible sickness for almost all of my life. It started in the 5th grade when I came down with strep throat an mono at the same. This continued and I had mono for most of my high school years. Teachers thought I was faking it and would flunk me, therefore my gpa wasn’t so fantastic. Then came the girlie problems. Period pain, Endometriosis, Adenomyosis and finally Polycystic Ovary Syndrome all diseased that you can’t see unless you put a little telescope through my belly button. Most people thought I was faking it, most doctors told me I was find…some of those even went in and looked around and said I was fine, but I knew that I wasn’t. It’s not easy to be told it’s all your imagination, but I proceeded anyway knowing I wasn’t crazy. June of 2009 I finally had an ovary removed that hurt constantly and would keep getting cysts every other month…some tangerine size, some grapefruit size (don’t ask my why I go to citrus fruit to explain cysts..but I do). I really thought my life was going to change. I thought all the symptoms I had been feeling, fatigue, depression, anxiety, muscle aches and pains, insomnia..blah blah blah were all due to me being in chronic pain from the ovary and going through some hard spots in life. Lately I’ve found this to be wrong.

To keep this focused I want to express how hard it is to have something wrong with you that most people don’t understand and has a stigma of being all in your head. I feel the physical symptoms and they frustrate the hell out of me. This happens more than I like, but I admitted today that I’ve been working with my doctor on my lovely new diagnosis fibromyalgia and completely regretted saying anything once I did. Suddenly they went in to the “we can think ourselves healthy mode”. NOW, I do understand being a psychology major that there is a link between my flare ups, stress level and anxiety, there for part of it truly IS in my head. Yet don’t you think if I was able to THINK myself healthy I would have fucking done it already? I’m sure there are people out there that like the attention of being sick, but personally I feel it’s a pain in my ass. It’s preventing me from being the person I wish to be, the mother I want to be, the wife I want to be and following my dreams. So if I could think myself out of this mess wouldn’t I? I see the psychological connection but I’m not fucking crazy. I may be depressed and anxious and need to take medication for that, but who wouldn’t be when they can’t predict how they will feel on a day to day basis. Will today be a good day? Will today be a bad day?

I’m not sure how to handle talking to someone who tells me it’s mind over health. I beleive that in a sense and think I need to find balance in my life. Yet if it were in my head I wouldn’t have chronic illnesses. I didn’t grow up saying…I want to have chronic illnesses when I grow up and not achieve my dreams…nope…I had dreams just like everyone else did. I’ve just instead spent most of my life sick. Fuck you Fibromyalgia, I’m a little pissed. There’s still the part of me that can seperate that person who tells me that I need to think myself well and I will be…and understand that they just don’t understand. Yet it’s still hurts, frustrates me and makes me angry. I’ve tried herbal remedies, things that have bad side effects, things that don’t work, and even have tried thinking myself healthy. There comes a point where I just don’t want to hear the shit. So…if I heard tapeworms were the cure for fibromyalgia would I go ingest so tape worms? I think not. I’m over searching for a miracle cure. This doesn’t mean I’m still not searching for what makes me feel better…I will always continue that. Yet screw the people who think I need to change my attitude and think myself well. I would be well if that fucking worked.

So today also came with a harsh reality that I don’t think I have the ability to sing anymore. It’s not that I don’t have my voice, but I don’t have the ability to really memorize songs anymore. I’ve been working my ass off on this one song and keep screwing up the words. Ten years ago I wouldn’t have had a problem. I’m thinking the music thing wasn’t such a good idea and will be stepping back. Maybe I can think myself able to memorize things again (sarcasm)

That’s it for now, had to get this out.

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Have you experienced side-effects?

CYMBALTA AND LYRICA SIDE EFFECTS

Hi Everyone!  I hope you are all recovering from Hump Day, and are gearing up for the weekend!  I was wondering if you would help me by taking part in these polls?  I am working on an article, and I would love to hear as much feedback as possible!

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There has been so much talk about these 2 medications as of late on this site as well as on our Facebook group.   It would be awesome to hear about your personal experience, and how these medications have worked for you!!!

Thanks so much for all the time and energy you give to others, and all of the amazing support you give me every day!  I truly appreciate it!!

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