With Fibromyalgia Awareness Day approaching (May 12), I thought this would be a good time to talk about why awareness of this or any illness is so critical. I would even go so far as to say that awareness is the cornerstone upon which future medical advances are built.

"It doesn't make it right … but sometimes money gets to people," Orrillo said, adding that financial strife was just one of many difficulties Mary Hansen was facing. "I think she just had so much on her plate. She has fibromyalgia. She doesn't have much family. … (She) and her daughter were it for the most part."

Few health conditions are more misunderstood than fibromyalgia. Unlike tendinitis or arthritis, where the source of the pain is usually easy to understand, fibromyalgia remains a bit of a mystery, as do the factors which cause it.

hen you’re living with fibromyalgia, conserving energy is a must. Even on good days, what other people consider basic chores can be exhausting for you. That’s why when you have fibromyalgia pain, you need to become “maximally efficient,” says Beth Darnall, PhD,

Disclaimer: If you're a hypochondriac do not read this article, you have enough problems without adding this to your miseries, hypochondria is problem enough on its own and just dealing with that is enough for anyone.

The hardest thing about fibromyalgia aside from having it in the first place is getting the diagnosis in the first place; there are reasons for this, fairly equal split between the patient and patient. Doctors treat what is in front of them, so don't fall into the trap. Trap, you ask? Yes, trap. As I said, doctors treat what is in front of them, so if you go in for sleep problems one time, cranky digestive tract another and rashes another, the doctor is going to look at each of these independently. They have a few minutes to see each patient and getting you out the door and another onto the freshly dispensed paper of the exam table is how they pay their bills. Well, that and stealing out of date magazines for their waiting rooms.

Anyway.

So, when you go in, you need to go in armed with a list of everything that is wrong with you, and the list needs to be complete. Facing a doctor on a schedule when I had my first migraine I diagnosed with a stomach virus and sent home for three days bed rest. I told him the basics, I had a screaming headache and was throwing up, and once he made his diagnoses he explained that the dancing lights were a symptom of being dehydrated. I didn't really notice that half my face was numb, but if I'd have mentioned it he's have jumped past the other symptoms and checked me for a stroke, then backed off to migraine when I passed a few simple tests. So, an IV for the dehydration loaded with anti-nausea meds and I was so loopy I didn't care what was actually happening. Half the problem was a doctor with a 15 minute patient window; the rest was me not accurately describing what was happening.

As I've mentioned before, I went through around seven years of symptoms that were individually treated before my wife mentioned that all of these things had to add up to something, so I made a list of everything I could remember going on over the past few months, and I got lucky and had a young doctor fresh out of medical school that got to play House and dig though my records and then the testing began. You have to eliminate other things in the process of a FM diagnosis, sleep apnea, Lyme Disease, Lupus, and digestive parasites and viruses to name a few. This calls for testing. Lots of it. Its not fun, its not pretty but be ready to donate samples of all sorts of bodily chemistry.

The first thing you'll find is that you hurt. The pain can be mild and it can range up to screaming, but something is always achy and its not restricted to just one part of your body. Its an all over hurt. As I've mentioned many times, Fibromyalgia is a complex word: Fibro = fibrous tissues meaning tendons and ligaments, my = muscles and algia = pain. The main complaint of FM patients is body pain. You notice it more in places that bend, joints; but, its all of the tendons and ligaments in your body aching. These are the things that bind muscle to bone and hold joints together, so while arthritis affects the inside of a joint, FM goes after the connective tissue that holds you together.

It really doesn't come and go, FM is a chronic condition so in time you sort of get used to hurting, the human body can get used to low pain in time. Actually, that's simplistic, your pain threshold might raise a little, but hurting every hour of every day adds up on you in time. It's a vicious cycle, pain keeps you from deep sleep, which is where the body heals and purges out all of the bad chemicals your body accumulates during the day, like lactic acid in muscles. A good way to look at it is you always feel like the day or two after hard physical work. The second half of the vicious cycle is that even if you can ignore constant pain, your body always knows that its there, and that will start to wear on you emotionally after a while.

So, to your list, if you have constant pain in all parts of your body, problems sleeping and moodiness or depression, write this all down and describe it as fully as you can.

A note for males, yes I know that its not "manly" to whine about pain and emotional stuff. Crawl out from under the rock Mr. Flintstone, this is the 21st century.

So, first the quick and dirty lists of Symptoms, Physical Conditions and Mental and Emotional Problems, if you read my FM stuff, you've seen these lists before, but the final list is updated:

Symptoms:
Sleep disturbance, stiffness, increased headaches, facial pain (Temporomandibular joint dysfunction), Irritable Bowel Syndrome and abdominal discomfort, paresthesia (numbness and tingling in the arms, hands or feet), Raynaud's Phenomenon (cold hands, feet, ears or nose), skin problems (rashes, hives, dry or blotchy skin), sensations of swelling, chest pains (costochondralgia or muscle pain which occurs where the ribs meet the chest wall), cognitive disorders (difficulty concentrating, memory lapses), depression and anxiety (as a result of the chronic pain associated with fibromyalgia).

Physical Conditions:
Allergies, bruising, clumsiness, dizziness, dropping items, dry eyes and mouth, feelings of swelling, hair loss, high or low temperature, irritable bladder, irritable bowel, lack of stamina, migraine headaches, mouth sores, muscle spasms, nocturnal myoclonus (restless legs), numbness and tingling, photophobia (sensitivity to light), skin itch, mottling, rash, sleep apnea, sore throat, morning stiffness, swollen glands, tender lymph nodes, tension headaches, visual changes and eye pain.

Mental and Emotional Problems:
Anxiety, confusion, mood swings, irritability, memory blanks, panic attacks, work mix-ups, trouble concentrating

Now is the expanded list; I caution you, gentle reader, I'm going to try to keep this from getting gross but I can't help it in all cases. So, grit your teeth and hang on for the ride, this is what I feel every day so reading it should be easier!

An Expanded look at symptoms and effects:

• Allergies and increased sensitivities to drugs: This is likely caused by the heightened sensitivity to the environment that comes with FM. I am a poster child of drug interactions. If it is supposed to make you dizzy I fall over, if it makes you sleepy, I'm out. I make it a habit not to read the warnings that come with meds till I've taken them for a few days on the off chance that I might psych myself into coming down with them. Allergies can be a pain, one say I wake up, grab clean clothes out of the drawer and then I break out in hives, so change to another detergent free of everything and wash everything that I own and hope for the best. Allergies also come and go, I developed hay fever and sensitivity to sunlight around the time I turned 40, what a pain in the ass. No, wait, pain in the ass is covered elsewhere.
• Bladder problems - Irritable bladder, increased or decreased urination frequency and something called interstitial cystitis, code words for (urgent and sometimes painful urination, general pelvic/groin pain or and the dreaded painful intercourse). Feeling like you have to pee when you don't need to, not realizing you need to pee until you NEED TO PEE, and walking around feeling like you landed on the bar on a boy's bike are annoyingly common these days. Ever tried to get your groove on when you feel like you're most personal parts feel kicked?
• Brain abnormalities – fancy name is cognitive dysfunction and it means memory loss or intellectual inefficiency, about 70% have this 'fibrofog', and why some of us refer to ourselves as fibrofoggies. Part of the benefits to good healthy sleep is that the thinking parts of the brain get a reboot every night and all of the chemical products that cloud thinking and the effects of exhaustion are cleared out of your RAM. If you don't get the sleep, you get the fog and this causes a lot of irritation when you snap at people who remind you about things that you swear up and down that they never told you in the first place. Invest on post it notes and if you have a smart phone, schedule everything and keep notes there too.
• Butterfly rash – About 15% get a reddish rash that can be confused with Lupus, and why that has to be eliminated as part of the diagnosis. It can come and go but some have it pretty constantly. Just get used to the itch, and be careful about bathing to soak sore muscles, this can make it worse.
• Chest pain and shortness of breath – You'll find this affects 60-70% of fibromyalgia patients. This can be costochondritis, mitral valve prolapsed or both. Costochondritis is pain where the muscle and chest wall meet at the ribs, and this pain (mainly to the left side) can easily be mistaken for a heart attack, especially if mitral valve prolapse is happening at the same time, as that adds an episode of irregular heart rate and shortness of breath to the mix. I was in the ER twice for this and once in the cardiac intensive care unit getting a probe run up from my groin into my heart before the FM diagnosis finally explained what was happening.
• Cutaneous hyperemia – these are reddened areas on your skin, especially at tender points. It makes you think you have a bruise but it doesn't bet the darker colors of a bruise. Since the happen at joints they're easy to mistake for a sore spot from bumping something you don't remember.
• Depression, anxiety and stress – if you don't sleep well and always hurt then its bound to affect your mental state. If you're tired and sore all the time its hard not to have some effects to your personality.
• Dizziness, inner ear disturbance, dizziness, balance problems, sensitivity to noise - Vertigo sucks, random dizziness, sometimes laying down helps, other times you get bed spins. Its not uncommon to get sick from this, stay near something you don't mind puking into. You can't walk a straight line, standing straight without weaving isn't easy either. Noise can get really bothersome, you have trouble picking out one voice in a crowded or noisy place, you can get headaches, and you just want to be somewhere quiet.
• Dropping Things - Your coordination isn't going to be what it used to be, lots of typos so be good friends with your spell checker, you'll also drop things. Probably a lot; oh, and you'll trip over everything, even painted lines.
• Dry eyes and dry mouth - aka sicca syndrome, it gets annoying trying to talk when your tongue sticks to the roof of your mouth and doesn't want to let go. Chew lots of gum, because a dry mouth means a stale mouth and it'll help produce saliva. Gum and eye drops are your friends.
• Ear complaints – (pain, tinnitus, hearing loss and/or stuffiness) Hearing loss is a hard thing to nail down for me, as is tinnitus, I worked on jet engines for a couple of decades, but I have hearing loss and tinnitus, I get ear aches and have to pop my ears a lot, and that hurts more than it used to.
• Extreme fatigue – This varies a bit from person to person, some are wiped out after doing very little, others are completely bedridden and can do next to nothing (15% of FM patients). Basically, ¾ of FM patients are fatigued by normal daily activity. To make it even more confusing, you can have better days where you can do more and other days when you can do next to nothing.
• Eye complaints – Changing vision, pain in or around the eye are common and there is also a type of migraine called an ocular migraine, which really screws with your vision, lights and weird flickering waves in front of your eyes. At least it doesn't hurt, but can still make you puke.
• Headache - 60-70% of FM patients have migraine-type headaches. Most are on one-side of the head and have face pain or numbness and sometimes neck pain and even muscle spasms. It can be any type of migraine, and they all suck.
• Hypoglycemia – This is an energy crash, you can feel weak, nervous or jittery, tired, nauseous, and you might feel tingling in your hands and feet. Your body seems to be screaming for sugar or carbs and you'll want it sooner rather than later.
• Intolerance to alcohol - 50% of FM patients find that their capacity to drink is lower than it used to be, drink with care. Seriously.
• Irritable bowel syndrome – This hits 39% of FM patients, abdominal wall tenderness, diarrhea and/or constipation. This one sucks. You'll need to figure out what can trigger this in you or you won't enjoy life at all. Tomatoes are my mortal enemy, I love them but even a squirt of ketchup on a burger can leave me a bloated, gut cramped bathroom dweller.
• Morning stiffness – No, this is not morning wood. ¾ of FM patients wake up stiff and have trouble moving around until they work out the kinks. I crack and pop like a box of tic tacs for a couple of hours.
• Mottle skin – This is blothy skin, discoloration of the skin without rash. It mainly hits the inner thighs and arms, it can mean bad things for veins or heart are happening, so get that checked.
• Muscle involvement – Not only can you feel tired all of the time; FM patients often have low ATP, which allows for the transfer of energy between cells, so about 80% manifest this though muscles degenerating because they can't repair themselves as efficiently, this also causes muscle soreness and spasms. Spasms are common in the legs, back and butt, larger muscle groups. It sucks. Other theories are that spasms come from reduced blood flow, and as a result of pain itself.
• Nasal and sinus congestion – Sinus problems will be with you a lot, congestion, sinus pain, and even chest infections from drainage. There is a theory that FM can be "cured" with large doses of mucus reducing drugs, but this strikes me as fairly nonsensical.
• Nausea and/or vomiting – Pain can cause it, so can migraines, sinuses, vertigo, ears, and the list goes on.
• Nocturnal Myoclonus: Just when I'm about to fall asleep, my legs jump or jolt and I'm wide awake again. Annoying as anything. Restless leg syndrome can also be a player here.
• Numbness and Tingling: 70% feel numbness/tingling in the arms, legs, hands and feet, its called 'parestheia' and basically feels like the your hands or feet or whatever 'fell asleep.'
• Pain – Widespread ache, it occurs over the whole body and can feel like that all over achy pain when you have the flu. It can fluctuate from dull ache to sharp pain but never goes away.
• Pain in all four quadrants – Widespread pain that hits 100% of FM patients and is mostly felt in shoulders, chest, arms, hands and upper back.
• Painful swallowing – It feels like everything has square corners and is going down sideways.
• Raynaud's syndrome – Cold hands/feet, sometimes nose and ears, this is followed by the area feeling hot, then turning red and tingling. 20 to 30% feel this even somewhat. Nothing worse than beet red ears, people wonder why you're embarrassed. This also leave hands and feet sensitive to things like hot or cold water.
• Sensitivity to hot and/or cold – Hot, and especially hot and humid weather makes you feel sick and cold weather leaves you stiff and sore. It hits about 98% of FM patients
• Sensitivity to the Environment: You can smell a smoker from across a room, noise, bright light, crowds, heat and cold are all very irritating.
• Skin changes – Dry skin, flaking and shedding skin like a snake, hair loss, painful peeling and splitting and cracking nails are all possible. This hits 70-80% and I notice it gets worse on my face and scalp if I let my hair grow out. I also loathe the razor, my face burns for days after I shave; so, I don't. Lotions can make this worse.
• Skin Irritations - Itching, usually head to toe, this can be linked with skin irritations. Random rashes and hives are common, as is dryness or no signs at all. It can be exacerbated by hot baths, heavy clothing, medications (especially codeine,) even minor stress can bring it out.
• Sleep disturbance - 95% of FM patients have some form of sleep disturbances and reduced REM sleep.
• Sore throat, swollen glands, low-grade fever and night sweats – Random fevers, not fun, and they make all of the achiness that much more unpleasant. Its not uncommon to wake up a sweaty mess, just be careful of that morning shower, you might find it dried out your skin and lotions can make that worse.
• Spasms - This is mentioned separately because they address another underlying problem: muscle microtrauma. This is tearing in small muscle fibers, and is very common among FM patients.
• Swelling and subjective soft tissue swelling – Mainly in the hands and feet, but I've had my feet swell all the way up to my knees. This happens if I'm on my feet too long, taking time to rest, especially with your feet elevated can help this. subjective soft tissue swelling happens when part of you feels swollen, but there is no visible swelling. This is very annoying because it feels like something is going to split to relieve the feeling of pressure.
• Temporomandibular Dysfunction (TMJD) – About ¼ have facial pain, and this can be caused by or amplified by TMJD. You might feel pain while on chewing or at the front of the ear, tight facial/jaw muscle, trouble opening your mouth wide, clicking or popping while moving your mouth or chewing. It can even add to neck or shoulder pain. My personal favorite is when it pops and it feels like I was stabbed in the ear drum by a hot ice picks and you even feel what seems to be a hot rush of fluis, but its not really draining.
• Tender points – This is a major diagnosis tool as there are 18 points on the body that are sensitive to touch. Just the thought of getting a massage makes me flinch, there are some massage therapists that know how to treat FM patients, but they can be hard to find, good ones at least.
• Thyroid disease – 20-30% of FM patients have anti-thyroid antibodies, this is something that should be tested during diagnosis.
• Tooth complaints – Mainly sensitivity to hot and cold, but dry mouth can cause gum problems, see your dentist when you're supposed to and get regular cleanings.
• Vision problems - i.e., photophobia – Gremlins aren't the only ones that hate bright light. Among changes to vision you'll find you better keep sunglasses handy.
• Weather – You'll feel pressure changes that signal weather changes, also known as the human barometer. It can cause headaches, bother your ears and sinuses and even leave you feeling sick and rundown if it's a major front coming in.

Basically, in order to be properly diagnosed or treated, consider this list and how the items on if affect you personally. Write it all out and take it in to the doctor with you, explain that you have the list because these are the things you actually feel, not a list you found on the internet. Do not take a copy of my list in and ask for treatment, for one thing it doesn't describe how YOU feel, and once the doctor realizes you are describing how you feel in somebody else's words, you go straight to the hypochondria pile.

Fibromyalgia is one of those things that really emphasized the phrase "Your Mileage May Vary," what I feel another won't. Not everybody has all symptoms, and not all possible symptoms are listed here, FM is different things to different people, some similar, others completely different.

The two most common treatments for musculoskeletal pain used by physical therapists are ultrasound and transcutaneous electrical nerve stimulation (TENS).

The most prevalent theory is that fibromyalgia results from a disturbance in the central nervous system called central sensitization, which may intensify pain signals.

Linked to that theory is the notion that patients have higher amounts of a compound called substance P in their spinal fluid, which increases their sensitivity to pain.

Fibromyalgia is a chronic condition whose symptoms include muscle and tissue pain, fatigue, depression, and sleep disturbances; it often mimics or appears together with other chronic conditions such as irritable bowel syndrome (IBS), lupus, and arthritis. "There are usually other things that are triggering it, so you have to individualize treatment for each patient," says Daniel Arkfeld, MD, an associate professor of clinical medicine at the Keck School of Medicine at the University of Southern California

.....some aches are neither OA nor RA, but a distant relative in the arthritis family -- or not arthritis at all. How can you tell?

 

By:  Paula Spencer, Caring.com

The use of cannabis is associated with beneficial effects on various symptoms of fibromyalgia, including the relief of pain and muscle stiffness, according to the results of an observational case-control study published online in the journal PLoS (Public Library of Science) ONE. Fibromyalgia is a chronic pain syndrome associated with musculoskeletal pain and fatigue. Symptoms of fibromyalgia are poorly controlled by conventional medications.

This is a source for this debilitating illness that I found. Chronic Fatigue Syndrome along with other illnesses are also referred to. One can also apply for Disability if they aren't able to work.

Fibromyalgia is difficult to live with and endure. You are in horrible pain, mostly all day, every day. You can't sleep because you are uncomfortable and toss and turn a million times and you never reach restorative sleep (or stages 3 and 4 REM sleep), so your muscles do not heal nor repair themselves. Fibromyalgia causes not only pain and sore muscles, but also stiffness, fatigue, sensitivities to sound, light and weather, migraines, gastrointestinal issues, numbness and tingling sensations, Restless Leg Syndrome and often Fibromyalgia patients start developing other conditions on top of the Fibro. Fibromyalgia affects all aspects of life. Work is difficult, if your body will allow you to do it at all, travel can be a nightmare and relationships are hard to maintain because you can't keep up with them and you don't function the way they do.

Do you or someone you know have Fibromyalgia?

Since I figured that there was an actual Vine group about this, that I'd pose this question to you guys. Please bear with me because this is a little long.

So...just over a year ago I finished up chemo for breast cancer. The doc then put me on Femara. I took that for about 4 weeks and found that I could not tolerate the joint stiffness/pain, etc, etc. It was pretty bad. We tried Aromasin & then Tamoxifen with the same type of results.  I told my oncologist that my quality of life for the next 5 years was more important to me than taking that crap and completely debilitating myself. She was cool about it.

Fast forward to about 6 months ago. Progressively I've been experiencing joint stiffness and pain. It went from my fingers/toes, then to ankles/wrists, knees/elbows, hips/shoulders, and then lower back.  From there it went to having body aches...like I had the flu without the fever or upper respiratory problems. Everything ached. My forearms, thighs, et, etc. Now with all that, it feels like some sadistic mother@!$%#er has a voodoo doll of me. I will experience burning, shooting pains at random times and in random parts of my body - the bottom of my foot, my thumb, my shoulder, my calf, my gut.  Sometimes it's like, "@!$%#! There it goes again!" and sometimes it's so bad that I pretty much stop what I'm doing so I can get through the next 10-15 seconds of my life.

When I first went to my doc, she gave me something called Voltarin, which worked for about 6 weeks. It relieved the ache, but not the shooting pains. Then we went to a prednisone taper. That worked on the higher doses, but I started having problems again at the lower doses. Nothing has ever been able to relieve the shooting/burning pains that I get.

On top of all that, I feel completely exhausted. Part of it is that I have a hard time sleeping because of the pain. And when I DO sleep, even if it's for 12 hours straight, I feel like I could sleep another 24 hours.

I have an appt with a rheumatologist on June 10th, and I'm wondering if there is anything else that I can ask or discuss with him aside from my symptoms.

Any insight ANY of you might have would be helpful and very much appreciated.

"A growing body of research is linking fascial problems to FMS. Myofascial pain syndrome, which involves constant pain due to multiple trigger points, is extremely common in us and is considered a risk factor for developing FMS. We've had at least 3 studies shore up the link in the past year, showing that: .... "

Painful and puzzling, fibromyalgia primarily strikes women. Why? Researchers don't know. And with details scarce about its cause and treatment, dealing with the condition can be maddening. We have answers to 10 common questions. Plus, test your women's health IQ...

If you have Fibromyalgia and are unable to work, you may need to investigate what your options are, both short term and long term, for taking time off from your job or even for going on permanent disability....

Most of us with Fibromyalgia know what the term 'Fibrofog' means. It's the fog-like feeling you get when you can't remember where you put your keys or you can't find the right words to tell a story or your memory isn't at all what it used to be. And those keys you were searching for.......are in your freezer! How did that happen?? I have Fibro fog quite often but the thing that is scaring me the most, is that I am having major difficulty remembering my childhood or great times in my life and my memories are quickly fading. The other day I was trying to stir up some memories in my life that make me happy or that I wanted to relive and none were coming to mind. I was trying to think of memories that once were so easy to conjure up and now I can't remember them and I feel they are all slipping away. I spent time alone trying to think of memories that are special to me or make me happy, but instead, grew frustrated and sad when I couldn't seem to remember them. Is this happening to you?

The medical community has been aware of fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) for decades, but we have incredibly few answers. What causes these illnesses? Why do they tend to run in families? What are the underlying mechanisms and how can we correct them? Are they communicable? How can we prevent them?

We don't have definitive, widely accepted answers to a single one.

Exercise can help fibromyalgia suffers.

The words Fibromyalgia and Death don't normally go hand in hand, however, there are more and more reports that suicide is increasing at a rapid rate in those diagnosed with Fibromyalgia. I can honestly admit that in my darkest times, suicide has crept into my mind. Being in pain all day, everyday is difficult. Not having enough support or understanding can make it even more difficult. Hopefully this article will shed some light on this startling and unfortunate topic.

I just came across this article and thought that it would be of interest to those that are suffering from one of these conditions.

Just some information about dental problems, pain in the teeth or jaw, TMJ or tooth loss that seems to be due from Fibromyalgia or rather, the complications from having Fibromyalgia. Dental issues do not seem to be discussed (in relation to Fibromyalgia) too often. Hope this information is helpful to some of you.

This piece moved me to share it.

"Props":
A letter from the Knights of Fibromyalgia
written by Brady, aka PizzaMan242

I suppose I need permission, but I've not had a chance to join the group. So it may turn out, that I have to delete the post. I apologize in advance, if that is the case.

Almost everything you need to know about Fibromyalgia, including the 18 tender points (images/slides and descriptions also included), tips on how to cope with the pain, fog and fatigue, how to deal with friends and family, a list of some of the common Fibromyalgia symptoms and what foods are best......and best to avoid.

The American College of Rheumatology is proposing new criteria for diagnosing Fibromyalgia. This is good news to the millions of us with Fibromyalgia and this also may help those out there who are hurting, confused and don't know what is wrong with them.

Anyone with Fibromyalgia knows how miserable it is. The pain, the stiffness, the insomnia, the fatigue, etc. But Fibromyalgia doesn't just affect the one diagnosed with it. It can also have a major impact on your spouse, care giver or loved ones.

I know the above statement leaves me vulnerable to crude sex jokes, but it's not exactly funny. I definitely have an over-active gag reflex and perhaps may even have something called dysphagia. Because of that, I have a hard time swallowing, whether it be medications, pretzels or even soup! Unfortunately, I have severe Fibromyalgia, which means I have to take quite a few medications a few times daily and also take vitamins, along with eating and drinking, of course. For me, it is quite draining. I can't just tilt my head back, pop in the pills and swallow. I have to crush or cut up the pills like you would for a baby! And the vitamins I mentioned? Well, they're gummy vitamins. Should I just start drinking out of a bottle now and start wearing a bib? If a medication can't be cut up or crushed, I can't take it. If the vitamin is too big, I can't take it. If the juicy piece of steak with the good fat on it is too big, I have to cut it smaller. Good times, right? Doctors have gone as far as trying to literally shove the medication down my throat with their hands, close my mouth and rub my throat. Still, the medication sits there lurking, defying the doctor and his ego! Doctors have hidden medication in apple sauce, pudding, yogurt....and still the pill would remain! At first, doctors may have thought that I was being difficult or was just too nervous, but over the course of many years of letting the doctors try anything and everything, they slowly came to realize I was fully cooperative and would let them try whatever they wanted to try, to help make it easier for me to swallow. But, nothing has worked. Whether it be letting someone try forcefully shoving medication down my throat, spending time by myself practicing trying to swallow tic tacs, hiding medications in foods........it just doesn't go down! After going through all of this for years, it's now routine for me to go to the baby isle to buy children's gummie-like vitamins and head to the register. It's routine for the clerk to ask if the vitamins are for my child? It's now routine for me to watch the clerk give me an awkward glance, when I tell her the gummies are for me. If I'm in public and need to take my medicine, it's routine to watch as people stare at me while I chew my medication. I'm like a baby trapped in a young woman's body. It's kind of embarrassing, but I'm pretty used to it by now. Odds are most of you reading this are on some kind of medication. Whether it be blood pressure medicine, sleep aides, pain killers or even the tiny, blue pill that starts with the letter V, I bet you take some kind of medicine daily. Now imagine being me and not being able to just toss it in your mouth, swallow and go. It would annoy you, right? Is it a pain in the neck? Yes. Is it the end of the world? No. It's just my complaint of the day and I felt like sharing it. Well, gotta go take my medicine now.............

I have Restless Legs Syndrome (RLS) which is just one of the many conditions that comes with Fibromyalgia. While it doesn't affect me too much during the day, trying to get some sleep is a joke. My legs are constantly moving, uncomfortable or have the feeling of numbness and tingling. I toss and turn and move around all through the night. What's a girl gotta do to get some relief? Should I strap my legs down before going to bed?

A bit of yoga sure is worth a try, anything that will give some relief would be welcome to all sufferers.

Over 100, 000 veterans from the first Gulf War have reported chronic musculoskeletal pain or Fibromyalgia...

A drug which could help to relieve the pain of Fibromyalgia loses FDA approval...

4 good habits to adopt if you have Fibromyalgia...

.This has been a very bad year. As I sat at my computer thinking and reading the thoughts of others, I realized how much I really didn't give a rats ass about anything. Wow, it really hit me hard. I had some emotional issues in my 20's and took my delivered dose of Med's and therapy. Actually took Paxil for so many years , until one day I thought screw it. If I am going to be a nut job, so be it. I have to say I did not totally run amok....some of you out there might disagree....lolrotf. BUT I did manage to find a common ground in life where I realized @!$%# happens and no one promised me a rose garden.

I finally became OK with my core values and decided to just let the flack fall where it may. I was way to old to be held hostage by my own indecision's about who and what I was AND MAYBE ,WHAT I WAS, REALLY ABOUT, was OK. So I sort that out and I still feel like crap. Then I remember my old long time friend , Fibromyalgia. I have had it so many years it seems like I forgot I had it. Life was just a world of one kind of pain,or another. I thought that just was what being alive meant. I have Ostio-Arthritis so bad my hands look like a Bonsai Tree. I drop every other thing I grab and it seems life is a succession of bending my corpulent self over, every other time I grab something , as it falls right through my grasp.The Arthur is so bad, made the Fibro float away so far, the grey cells forgot to remember my old friend.

It hit me last spring that my neighbor across the street...my age, seemed to always be bragging about still climbing a ladder to clean her gutters...she is like a Gad-fly. She flits here and there and preens her slim,nimble body like a Peacock....{male,that is] Me I hobble here and I hobble there, I am jealous. That bothers me also. See I am one of the old hold outs that believes in GOD. It took allot of meditation to not be really, really, pissed at Him. It has seemed He has heaped and inordinately large amount of "CRAP" on my plate. Then I see the Gad-Fly and boy that can do it for me....bummmerrrrrrrrrrrr. If I see her up on the roof I have to restrain my self from wishing she'd fall off. One day she did, fall off the ladder into a gopher hole....Well that did it...Now I have to listen to how much pain she is in because she "strained a muscle" in her back. So I made a deal with God..... I'll never wish for her to fall off the roof,if He just shuts her up! OK , I got side tracked.

Fibromyalgia....well in 1970,when I was diagnosed...possibly Lupus at the university of Oregon Medical School, I sort of did the Ostrich thing and thought if I was going to live a long and full life I had to "FORGET ABOUT IT". I soon found there was no-one remotely interested in the fact that I had A LITTLE PAIN. Where? every where, "Yah,right" they'd say. I even had a doctor once actually say to me,when I listed it as a presenting condition...."You mean, there really IS a real medical condition called,Fibro....what"? I thought it was just a bunch of whiners!!!!! I resisted kicking him in his crotch and asking him to whine for me.

So my fellow Fibromyalgia sufferers....that is a word right? It does not get any better. It does not go away. In fact it is worse. It makes me depressed even on a good day,when my brain says,"Hi World,lets dance"....It is a sneaky,@!$%#ty,not fair illness and so every day NOW....I take the pain meds..."how addicted can a 70 yr old woman get and who cares anywayJust give me the drugs and let me live a quasi normal life,even if it is not on a ladder...( I offered to take her up on her offer to clean my gutters) me bad! I even ordered up my "medical Tobacco" card as my grandson calls it....There have to be some perks to off set the down side, right?

Did I have a point when I started? I do not know. Maybe you all do not care.... It could be the pain meds,

all-time-ers/old-time-ers, dementia, or just plain OLD....but who gives a rip anyway....Have a good one, one and all.

It goes without saying that Fibromyalgia puts some limitations on your life, there, I said it; but, with that said there are things that you can do to reduce your limitations and enjoy things that make you happy. The beginning of August is a busy time for me, the first weekend of the month for me is at Fandemonium. It’s a local convention where the practitioners of geek-fu and nerd-kwan-do strut their stuff in full Technicolor glory. It’s the gathering place for fans of fantasy, science fiction, anime, role playing and tabletop games and video games let it all hang out and ignore the rest of the silly world in its mundane grayscale hues.

All of that in Idaho? You scoff? Yes, silly disbeliever, all of that in Idaho. After all, Idaho is the Firefly ‘Verse here on Earth. Think about that for a minute…

Every year I gather my merry band and we spend three days in the glory that is Fandom, covering events for two of my sites that here in Newsvine shall remain nameless. One covers gaming and the other is for writers, roleplayers and artists, and we photograph and interview everyone we can. But that doesn’t really come easy when you are a fibro-foggy. Three days that officially start at 10 am and end at midnight, plus setup time and travel, so it adds up on you in a hurry.

The first thing to do is eliminate anything stressful that you can. We plan for months ahead of time and when it’s “Go-Time” we just toss some rubbermade tubs in the back of my truck and head off to con. Stress is the physical and emotional tension that builds up in your body as you try and mountain climb over mole hills. Stress takes an ugly toll on your body so my advice to you is to spread the stress over as many weeks as you can before you even go.

Take your meds! This is no time to fall off of the good habits wagon. The meds and vitamins you take (if you take vitamins) help keep you going on an average day, and you don’t have one of those in sight for a while to come. I tend to goose up my B vitamins because they help with stress and energy, I don’t recommend this for everyone because I’m not an expert or a doctor I just know what helps me along. I don’t start the morning with a B overload, I hit one for each meal and then chuckle at the fluorescent color when I pee.

Diet is important too, first of all you can snack through the day on things that give you energy, avoiding energy drinks as the crash afterwards is wicked. I cheat on the food, most events won’t allow you to bring in outside stuff, but since I have a table at the Convention and lots of stuff to bring in for that they don’t notice the big cooler that comes in and hides under the table. So while people are trying to live off of the overpriced junkfood I have salad, ham and cheese sandwiches, fresh fruit and veggies, and little cheeses. I’m not a fan of water but I do drink it at cons, usually spiked with about 1/3 the recommended amount of powdered sports drink mixed in.

Part of diet is to know what can cause you problems, one squirt of ketchup can unleash the fury of IBS and I’ll be making frequent dashes to the facilities. Know what foods can trigger the different conditions that come with FM in you, because your triggers can be completely different for everyone. Apple slices for me are good, high citrus is not. As I mentioned avoid energy drinks and relying on caffeine, I still have my coffee early and late in the Convention day, but one is for the morning bump and the latter is to relax. I know better than to rely on it. One trick that a lot of people don’t know, is that if you absolutely need a coffee rush pound a quick coffee and then sneak off somewhere for a 20 minute nap. It takes that long for the java to hiit your body and the power nap can refresh you for whatever comes next.

Pacing is something else you have to watch out for. The average Janes and Joes can drop down and sprawl out anywhere during the course of the day, the Fibro Folk know that once on the floor the time you remain there gets longer as the day gets later. Walk when you must, stand when you have to, and sit when you get the chance. Stop what you’re doing and stretch out now and then, all of those tendons and ligaments are building up tension like springs that’ll try and curl you up in a ball if you don’t take what control you can to release the tension. Pacing comes from planning, every convention has a schedule, so I get it as early in the process as I can and plan out what I need to do and where I need to be, sometimes I have to sacrifice something between two events in order to keep from running around with my hair on fire and fizzling out.

Then comes the last and most important thing, leave a few days after for recovery. No matter what you’re going to wear yourself out, Con was Friday till Sunday and I didn’t feel remotely human till the end of the week, it was worth it to me though, and sometimes that’s what you have to do, overindulge in life now and then, but know you’ll need to pay the fiddler when the dance is done.

Image and locations of Fibromyalgia pressure points and other helpful information.

Here's a list of the top ten stupid things that some people say about Fibromyalgia:

1. It's all in your head.
2. Fibromyalgia is not a real condition.
3. You look ok to me, so it can't be that bad.
4. You should suck it up or toughen up.
5. You're just depressed.
6. I know someone who had it and it went away.
7. I know someone with it and they are just fine.
8. You're just a hypochondriac.
9. Doctors don't even understand it, so it can't be real.
10. Fibromyalgia is just a marketing ploy by pharmaceutical companies to make more money.

Here's my top ten list:

1. You're wrong.
2. You're wrong.
3. You're wrong.
4. You're wrong.
5. You're wrong.
6. You're wrong.
7. You're wrong.
8. You're wrong.
9. You're wrong.
10. You're wrong.

Get the picture?

Gene detectives on Sunday announced they had found the first inherited link to common types of migraine, a finding that boosts hopes for new drugs to curb this painful and costly disorder.

Scientists from 40 medical centres pored over the genetic profiles of more than 50,000 people, comparing those who suffered badly from migraines with others who were otherwise healthy.

What came up in the net was a tiny but telltale variant of DNA that boosts the risk of getting migraines by around fifth.

"This is the first time we have been able to peer into the genomes of many thousands of people and find genetic clues to understand common migraine," said Aarno Palotie, head of the International Headache Genetics Consortium at Britain's Wellcome Trust Sanger Institute, which led the study.

Previous research has found links for some extreme, but mercifully rare, forms of migraine, but this is the first to pinpoint an association for common types of the disease.

Costochondritis... is one of the many fun conditions that having Fibromyalgia bestows on me. Has anyone else had this or heard of it?

A very in depth article regarding Fibromyalgia and other similar conditions. Very informative...

Fibromyalgia is a very real, complicated condition. Many of the symptoms are similar to other conditions, such as CFS, Lyme disease, depression, etc. You may also suffer from more than just one of the conditions, making it even more confusing and complicated.

Tai chi eased painful joints and other symptoms of fibromyalgia in a small but well-done study of this ancient Chinese form of exercise.

Tai chi (ty-CHEE') combines meditation with slow, gentle movements, deep breathing and relaxation. It can improve muscle strength, balance, sleep, coordination and, some evidence suggests, fibromyalgia.

Symptoms of the illness include fatigue, body pain, and tender points in joints, muscles and other soft tissues. It is most common in middle-aged women. Its cause is unknown, and the lack of obvious signs or definitive tests has led some doctors to question whether it is a physical or psychological problem.

The study led by Dr. Chenchen Wang at Tufts University School of Medicine in Boston involved 66 fibromyalgia patients assigned to try either tai chi or wellness education and stretching exercises twice a week for 12 weeks.

Symptoms improved significantly for the tai chi group and little for the others, as measured by a commonly used questionnaire. Improvements were seen in pain, mood, quality of life, sleep and exercise capacity, and remained at 24 weeks after the study's start.

The results are in Thursday's New England Journal of Medicine.

In an editorial, two doctors and an Oriental medicine specialist from Beth Israel Deaconess Medical Center in Boston called the results "provocative" and "striking," but said that it's unclear how much of the benefit is due to a placebo effect. The results need to be repeated in a larger study, they conclude.

The study's main sponsor was the government's National Center for Complementary and Alternative Medicine. Several authors have received federal grants for mind-body research and one has financial ties to companies that make drugs to treat fibromyalgia.

___

Online:

Journal: http://www.nejm.org

Tai chi: http://nccam.nih.gov/health/taichi/

Fibromyalgia: http://www.nlm.nih.gov/medlineplus/fibromyalgia.html

Some medications that are currently being used to help treat Fibromyalgia are Lyrica, Cymbalta and Savella. I have used Lyrica (gained weight, helped me sleep a bit more and it worked somewhat), Cymbalta (gave me horrible headaches and nausea and had to stop taking it) and a few others. Now I am on to trying Savella. It has only been 3 weeks so far. It seems to lessen pain a little and helps me to function a little more, but it's too early to tell if it's really helping or not. I have to just cross my fingers and hope...and wait.

The bad news is that there are over 100 autoimmune diseases and they sometimes mimic other conditions, which can make it difficult to get correctly diagnosed. The good news is that more and more people are speaking up, doing their own research and explaining their symptoms and that helps educate the doctors, who in return, are taking these conditions more seriously.

No one can figure out what causes Fibromyalgia... Is it an impaired central nervous system that causes the illness? Infections, such as Mononucleosis? A brain abnormality? Severe physical and emotional trauma? When will we know? If we don't know what causes it, how can we cure it?

A new study of the drug sodium oxybate for the special sleep problems of fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) really caught my attention for several reasons:

The 2 conditions were studied together.

It ties our sleep abnormalities to narcolepsy.

It was pretty darned successful.

You look just fine and nothing is broken, so why do you say you have so much pain, and why don't you have the energy to just get up and go? These are the frustrating questions that people with Fibromyalgia face every day. A research study headed up by Fausto Salaffi, M.D., in Milan, Italy, documents the serious impact Fibromyalgia has on a person's health-related quality of life.*

Omega-3 fatty acid (FA) supplements can benefit your joints and cardiovascular system, but what about the pain of fibromyalgia? A small, one-month study involving 12 fibromyalgia patients showed improvements in tender point pain counts, chest expansion (e.g., less muscle tightness), and perceived fatigue levels.1 Even total cholesterol dropped with the supplementation of 1,500 mg per day of the combined two key omega-3 FAs: eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA).

People who have the common chronic pain condition fibromyalgia often report that they don't respond to the types of medication that relieve other people's pain.

New research from the University of Michigan Health System helps to explain why that might be: Patients with fibromyalgia were found to have reduced binding ability of a type of receptor in the brain that is the target of opioid painkiller drugs such as morphine.

The American College of Rheumatology (ACR) is proposing a new set of diagnostic criteria for fibromyalgia that includes common symptoms such as fatigue, sleep disturbances, and cognitive problems, as well as pain.