And the stories continue to arrive on a daily basis. For each story told there are literally hundreds of thousands whose stories are left untold. Our collective voices here can't even begin to touch the magnitude of numbers who are affected with these illness.

I have pain in my shoulders, arms, hands and wrist. I can't grip anything for more than a few minutes before the pain gets so severe my hands freeze up. I have even wrapped items to my hands to do certain items like a vacuum cleaner to clean up a spill-for instance I use an ace bandage to hold the vacuum nozzle in my hand.

I can tolerate holding things in my hands if I hold the item loosely in my hands. The pain in the above area mentioned is around the clock intensifying with gripping. I live with sharp stabbing pains, continuous bee stinging type of pain and painful numbness and stinging. Some Nerves actually feel like they are on fire and burning through my flesh. The pain rotates and radiates to many other areas. What is stiff and hurting one day maybe sharp and stabbing on another day. So each day there is total body pain to deal with.

I try to take joy in flowers and songbirds, and the smells of a summer breeze. I use meditation, self-hypnosis, pain medication and just plain keeping my mind on how pretty the flowers bloomed just to get a few minutes relief from chronic pain. Soon though the pain reawakens your reality.

I have floaters in my eyes that drive me crazy- Reading makes me dizzy because the floaters move on the page I'm reading. I have developed three more floaters in the last three months. The eye Dr. said the fluid in my eyes are so trashed that he can't pick out only four total floaters. I have macula degenerative disease in my left eye and he doesn't know why.

I have severe migraine headaches almost daily and nothing seems to relieve them but very hot heat to the back of head and neck. I have sharp shooting pains that goes up my temple area to the side of my head. I do have bad arthritis and bone spurs in my neck now and my neck has a crepitus grind to it.

I have chest pains and a muscle that tightens up in a knot when bending a certain way. I also have pain in the sides of my breast that is painful to touch. The FM has set off a host of nerve pain.

My back troubles me-the muscle stay so stiff-I have started muscle therapy with a therapist trained in this and it helps my back and keeps the muscles more relaxed but in a few days the muscles start getting real tense again almost like the muscles are attacking themselves. This causes the hip and leg pain to worsen. It's like having stiff person syndrome.

When I injured my low back the pain radiated into both hips and the legs. The sciatic nerve drives me crazy with pain. The pain is sharp or feels like a thousand bee stings. I have numbness in all my extremities and in parts of my torso. FM has taken over and the pain is more than I can bear especially at nights when trying to sleep.

My low back is stiff and has sharp pains that go over the pelvic bones around to the front of my body in the bladder area and sears down the front of my legs into my knees.

The sciatic nerve going into my right heel now is permanently damaged and wearing shoes is very painful. Walking increases the pain to the point of severe burning in the heel. The longer I am up on my feet the worst it gets. This has been a problem because walking has always helped with pain control and limiting my walking and walking with a limp throws my gait off. This increases the leg and hip pain.

I can no longer use a cane because I can't grip the cane to walk with. When my legs go out on me down I go.

Any pressure to my body-like my grandchild holding my hand or my dog laying his head on my lap sets off immediate sharp pains. Pressure from bedding and furniture or just holding my foot on the gas or my hand on the steering wheel can set off pain. I have learned to use my hands very loosely as open hand on the steering wheel or holding a wash rag with an open relaxed hand makes it easier on me to do some things. My husband cuts up my food for me and peels potatoes etc.

To look at me you would not know I suffer the way that I do. I am on narcotics now and high doses of Amitriptylene. I have to take Motrin with the pain pills because the pain meds are no longer enough and my liver function tests are on the high side.

When the pain gets so intense I really don't care about the liver- I just need to get rid of the pain. I am 54 and am so afraid to see what I will be like at 60. I stay on edge, have no patience, and get tired so easily I could just drop- then the pain stops me from resting. My legs hurt and jump out of control and my hips and lower back hurt. I am up until 3:30am with restless leg syndrome and sciatica every night. I can usually close my eyes to rest then I am awakened at 6:00 am with pain on the rise again.

I average only 3 to 4 hours of sleep a night and other nights I am up all night alternating walking, standing, sitting and shaking my legs to relieve the intense pain. I swear I just walk until I almost faint from fatigue.

I am now trying antibiotic therapy and it does help keep the pain at a more therapeutic level so my pain medication will work better. Once I stop the antibiotics the pain returns full force.

I think about how my life will end and how growing older may drive me crazy with increased pain. How walking up the steps makes the pain worsen how sitting drives my low back and legs crazy with pain and how even typing- pains my hands to the point of painfully freezing up. It took me two days to type this.

I have to hold in my hands in hot water several times a day. I take an average of ten very hot showers every day for pain control. The drought has me panicky now-if my well dries up. The showers I take are so blistering hot my skin is cracking. It does relieve the overall pain for a little while so I can stand it a little better for an hour or so.

The muscles, joints and tendons pains are so bad I often think I will lose my mind. I am afraid of another car accident that would make my pain worse. Every fall sets me off for weeks with escalated pain problems.

I am incontinent of urine-the low back has caused nerve damage to my bladder and if I had bladder tack surgery I would not be able to urinate on my own.

I have IBS and like urine can catch me at the worse times. I have had more accidents that anyone could ever know. I have to stay near bathrooms and go quickly when the urge strikes.

I have pain in my skull in about eight different trigger areas. I wear a certain lightweight eyeglass frames to keep the pressure off my skull bones. I also have TMJ.

I have pain in 96% of my body. I have built up a tolerance to lack of sleep and pain. But I suffer from blurry vision and most days I can't even read, mental cloudiness is terrible- I have to back track to make sure things are turned off and doors are locked etc. I have trouble remembering from one minute to the next due to lack of sleep and pain.

I also suffer severe vertigo. The room spins round and round and I get so nauseated. Meclizine does help but I try not to take it because I worry about my liver. My choice is to relieve my pain not my vertigo.

Do I think about suicide? Yes I do-when the pain becomes too much to bear and as I age the DR's refuse to give me adequate pain medication. I have had many reactions to meds and many we can not take. Narcotics are about all I can take now-chronic gastritis from anti-inflammatory agents has limited me and asthma attacks on other meds is a bigger problem.

My Dr.'s now are tired of the chronic complaints-they don't even want to hear it. When I try to tell of a worsening pain they cut me off or turn away from me saying, "Oh, well." Two of my Dr.'s have been a friend and a blessing to me but even they have heard enough although they are more careful in their reaction to my complaints. I am to the point why complain? But if you don't complain then they think you can go back to work and live a normal life. They don't know that each day your dying inside.

Where FM came from I do not know-at first I was told they thought it was Epstein Bar but then soon changes it to FM. I do know I am slowing dying inside-my fears of more pain threatens my life and the pain I have now has nearly destroyed my life.

The rules on disability and what Medicare will or won't pay for and purchasing supplemental insurance on such a restricted income is another nightmare. What does Medicare consider medically necessary? Are FM, CFS and all others medically necessary office visits? Why can't we get pain control clinic visits for FM? Diabetics get to use pain control clinics under Medicare.

Who wants to live like this? Absolutely no one! I wanted to travel and see the world when I retired. That is what I worked for all those years but soon pain ruled and my workdays were sending me home in tears. How much more can I stand? I guess only God knows that.

I still try to do things around the house and in the yard and try to walk daily. Pain limits me and stops me but the determination to try is still there. If I don't move around the stiffness and pain sets in much worse and escalates the pain to the point of not wanting to live anymore. Activity, as much as I can stand, does help. This is not understood though because disability is about limited ROM, and not being able to bend or stoop or feed yourself. What separates the limits of chronic pain from limited ROM. Disability says Your ROM should be limited but in my case it's the pain-but I must move to keep pain under control, to keep down the stiffness that increases the pain. If my muscles aren't kept limber I feel like my muscles in my body, like a python, is slowly squeezing me to death. It even restricts my breathing. I need the walks I take to survive-to help with pain control. SO what do we do-how do we redefine the limits of what is disability.

Just please don't judge me on what you can not see or feel. Don't ridicule me when I use disabled parking. I try to avoid using the disabled parking by parking near the storefront. I hate the way people look at me like, 'why are you parking there?'

What kind of physicians should specialize in FM, CUFFS, MS and all the rest of the immune deficiency syndromes?

My bones crack and pop when I walk and it hurts bad enough to have broken a bone. Sometimes I have no doubt that I did break a bone in the top of my foot or my hand.

The awareness is needed and what you’re doing is wonderful. I doubt I ever see a cure but I do hope the younger generation can live without fear of suicide and know there is a cure on the horizon and their pain will be taken seriously and kept under better control. I do hope this is recognized as a serious disability and that they also understand how movement is necessary that you can't sit idly in a chair and keep your pain under better control.

Pain wears you down and makes you so tired. You can't think, you have decision-making problems, and daily mental functioning is greatly impaired. Try working like that. I did for the last two years and started making too many mistakes that are not tolerated by your employer.

My prayers are with you all in this March and in all your endeavors to help put an end to the ignorance placed on FM and related illnesses.

I am not sure this helps you but it sure helped me. Thank you

Everyday for the last 5 years I been in pain. People say to me oh I am sorry that you have it I say its not cancer see cancer runs in my family I have a Disease called Fibromyalgia I am not going to die like those who have cancer, I just feel like it. Everyday the pain is somewhere else or it hurts so bad that you ask GOD to take your life, then when you get a moment free of pain you are asking GOD to for give you that you really don’t want to die. I am lucky see I have kids I have to take care of them and they take care of me they can tell you stories about my pain we have a joke: I AM one big PAIN. I pray to God that someday soon that they will be an answer for all of us who live through it. And that I am a round to see it
Take care;
yours truly
Aline T Bryant

Hi! I am a 42-year-old mother of 3, step mom of 3 and wife of one. I use to work nursing until 4 years ago when I had an accident and later found out that I had FM, CFS, and degenerative disk disease with arthritis, osteoporosis and I had already been diagnosed with anxiety disorder, eating disorder, Disassociate identity disorder, and clinical depression.

I had those diagnoses 6 years prior when I caught my stepson with my 5 yr. old daughter and later found out he had raped my 6 yr. old son for the prior 2 years until that day I caught him. I fell apart (psychotic break they call it) and was in and out of hospitals for the next four years until I decided that I needed to take a hold of my life. You see I am a survivor myself and to have this happen to my children is never acceptable and if you are a survivor somehow it makes it worse cause you know what you went through and never ever want that for any other human and definitely not your kids. I had to face my own past now and also be there of my children to heal their recent issues of abuse with their half brother.

I have been in therapy as well as my children for 10 years and still am. I had though during this time and next few years had trouble with many different other body parts and systems and had had surgeries to fix them not ever thinking I had anything else going on with me. I had both wrists operated on to release dequervois tendons and both feet operated on to remove excess bone that was impairing walking, and had hysterectomy due to pelvic kidney inflamed and touching uterus and the choice was uterus or kidney and I chose kidney to stay. I had endometriosis but they only found that when they opened me up to take out uterus. I had gallbladder removed as it was completely blocked and had bowel obstruction the same year and had to have bowel resection and many months of antibiotics to aid in recovery.

I had always had many muscle aches, sleep patterns that constituted that I slept on average about 4 hours a night and not in a row about 2 hours at a time is all I got then and all I still get in any one allotment of sleep. I was sent to neurologist who had said I had what he thought was MS. I didn't go back to him for I didn't want MS I was only 34 at time and that just could not be. I never had any further tests run to confirm MS at that time but now know that the Fm and CFS were what gave me symptoms that mimicked MS.

I was also on so many psychotropic drugs that many doctors thought or made me feel I must be imagining my varied symptoms I had gone to them with, over the next few years. In 1998 I had a orthopedic doctor treating me for the fall I had, in the same year but had never seemed to recover from .He ran tests after tests to rule out lupus and rheumatoid arthritis and a variety of other illnesses and diseases. I was then by this doctor and treating neurologist said to have degenerative disk disease, Fibromyalgia and Chronic fatigue syndrome. I never even asked what these were for I was in such great pain daily I just wanted a pill or surgery to take it away and me be back to work.

I was sent to physical therapy and had numerous epidural injections and facet procedures done to aid in the degenerative disk disorder but no doctor would treat the FM or CFS as they said they could treat the degenerative disease only. I was made to feel if the others were not important or that I should forget I had them too as the doctors were ignoring them also. I was still in therapy for dealing with my past abuse issues and still taking at this time Zoloft only (I had thrown out all other medications for mental illness for they increased the fog I was in). I had been given every anti-inflammatory drug until I had to go in hospital with bleeding stomach. I also was on medpacs (short-term prednisone) and pain meds.

I did work as a nurse then, but it got harder and harder to lift patients and do my job due to the symptoms I was having. I decided to apply for my SSDI 4 years ago when the docs gave me no hope for my future to be pain free. They were saying I would not get better but progressively worse with my degenerative disease and they said the FM and CFS would also never get better. Well I had had years of depression and this surely didn't make me feel like living. I however have and had then a great therapist who has stayed with me throughout to see me through my physical problems and treat my mental ones that I think were somehow related for as I got worse mentally I always got worse physically to and vice a versa. I think they go hand in hand.

I had to fight to get my SSDI for to recognize Fm was unheard of so I had to get it for the other variety of things wrong with me. I have fought the HMO insurance I have, to find a doctor who will treat the FM and CFS and not only the disk disease. I have yet to find a doctor who will recognize FM and am still hunting one.

I am currently on oxycontin and arthrotec and nexium paxil and Valium. I am in pain daily and sleep less that 4 hours in any given night or day. I have recently had surgery to laser off nerve endings (called racks or ax I am not sure how it is spelled) at the last six disks of spine. That went seriously wrong on O.R. table as I had heart complications and it had to be stopped, as I couldn't be asleep and felt every one of those 12 needles the doctor put in my spine.

So I am currently fighting HMO to find a doctor who will treat all of me and not just the disk disease. I am still seeing therapist for abuse issues and am trying to maintain a life that is worth living daily but some days it is very hard not to throw in the towel. Many doctors treat the FM as an imaginary illness and given my years of mental therapy I get less heard than others would.

I live in south Florida and still have two children at home with me, I struggle most days to get out of bed and home school my 15 yr. old daughter. Her help blesses me and I pray that I will be strong each day to fight to go on and find treatment and a hope of my future.

I am sorry that this is long and choppy in content but there are so much and so many things that have happened in last 10 years. I have to say the worst thing I have had (besides my children being abused) is the treatment in both the doctors for mental help and for treatment for my FM and CFS. I have much more that goes with this but I cant sit here any longer as the pain is too much and I am not good at keeping it all in order. I hope this helps some how to bring awareness to how we need help and better treatments and insurance coverage in our society for us sufferers of these illnesses and diseases....thank you for allowing me a voice in this...

*name withheld per request*