A collection of short notes from the guest books. Each with an invisible illness, each with a story to tell. I have left these as they were written. One thing these illnesses have robbed us of is our cognitive functions. People who once were very efficient in typing, speaking, writing now deal with “fibro-fog” “typo’s” and such. I just ask that you look past the typo’s and see the hearts of those who have written. Men and women who’s lives have been irrevocably changed by these invisible illnesses. I give you now, the nameless voices.

 I am a fibromite and I am so pleased you are doing this for me. Thank you very much. God Bless You April 19, 2002 17:03:26 (GMT Time)

 Thank you for this wonderful website.. I was just diagnosed with Fibromyalgia, and want to do all I can in my area to make those aware of this disease. If you have any suggestions, they would be most welcome.. maybe even doing a walk in my area for the cause.... April 19, 2002 13:29:55 (GMT Time)

 I have already submitted my story through Ann-Marie. I just wanted to check out the sight. Debbie April 18, 2002 14:25:17 (GMT Time)

 Thank you for doing all this work-- I am passing the word on for people I know to sign this petition! We must be recognized-- the roller coaster this is-- and doctors to deal with. April 15, 2002 22:58:34 (GMT Time)

 Thank you! I'm passing this on to everyone i know... anything else I can do to help (as my "up" hours allow)??? Thanks for putting it together for all of us. Much appreciated :) April 15, 2002 19:18:54 (GMT Time)

 I,m glad to hear about this petition being presented to Congress. I've had symptoms for years and hoping someday a cure will be found. Thank you for your time and energy in getting this all together. Debra April 14, 2002 02:48:12 (GMT Time)

 Thanks for having a site like this. It is nice to have another place where fibromyalgia sufferers can go to tell their story. April 14, 2002 02:45:23 (GMT Time)

 My life has totally changed since getting Fibromyalgia. A day doesn't go by that I'm not in pain. I am constantly exhausted and very frustrated with not being able to think clearly and constantly forgeting things. I had a very good job and was constantly on the go. Now I can barely get out of bed and to do 2 loads of wash in a day is something. I fight with depression on a daily basis. I know that its not AIDS or CANCER but I urge CONGRESS to show some conpassion for the millions that are in constant pain. April 14, 2002 01:20:22 (GMT Time)

 Thanks for taking the time to spread such an important message. Our voices must be heard. FM has changed my life so much sometimes I feel like dying. But i am still holding on one day at a time. April 13, 2002 20:38:00 (GMT Time)

 Great site - it's so nice to hear from others who know how I feel. Thank you. April 13, 2002 18:31:00 (GMT Time)

 I have had Fibro fir 32 years, along with many of its related problems. I would like to see someone finakky reconise this disese and at least attemp to find a cure . If not a cure. April 13, 2002 17:52:01 (GMT Time)

 I suffer from fibromyalgia,I am 46 yeats old and love to have my life back. Diana April 13, 2002 15:55:31 (GMT Time)

 I am in constant pain every day. I do not remember when I had my last pain free day. The drugs that help the most make me sleepy and I have to work. So I take less efficient drugs during the day. I am on nine different pills plus a pain patch. I can't even enjoy my grandchildren. If only they could find a cure for this. It would touch so many lives. April 13, 2002 13:56:52 (GMT Time)

 It is so difficult to leave with this illness and have such poor treatments available. Because of the fibro, I have a great deal of difficulty with medications so going to the doctor and getting some pills is really not an option. I have had to give up so much of my life including my job it's hard not to get depressed. I am only 47 and that's too young to give up my life and not be able to make any plans because I don't know from day to day how I will feel. I am convinced in my own mind that there is an enviromental root to this disease.People who were previously healthy just get knocked off their feet and become near invalids.My faith is the only thing that keeps me going. For all of us who suffer from fibromyalgia,chronic fatigue and the related illnesses I offer my prayers and support. God Bless April 13, 2002 12:17:22 (GMT Time)

 Keep up the good work. The medical community and the government need to recognize that we have a serious problem and help us all they can! April 13, 2002 03:41:11 (GMT Time)

 I sure hope they can find the true cause of fibromyalgia and then they can treat the condition with medications that really work. Now they are treated symptoms and not the conditon. April 13, 2002 03:39:35 (GMT Time)

 I have had fibromyalgia for about 2 years now. I get frustrated when people tell me that I look great. They don't understand the pain and fatigue I am experiencing. I had to quit my job as a case manager because I no longer felt safe driving clients to appointments, since I would forget where I was going and also had excrutiating pain in my leg every time I drove for any distance. You may e-mail me at any time. You have my support. Sincerely, Mary Simmons April 13, 2002 02:22:02 (GMT Time)

 Your efforts are appreciated. Thank you. April 13, 2002 00:43:53 (GMT Time)

 Have had Fibromyalgia for about 18 years! Thanks for your information. April 12, 2002 14:22:32 (GMT Time)

 FMS has taken TOO much away from me and my family. It's time to fight back! April 12, 2002 13:53:00 (GMT Time)

 Thank you for all that you are doing for all of us that suffer from CFIDS and Fibromyalgia. God Bless you, April 11, 2002 23:36:30 (GMT Time)

 I am a 35 year-old mother and wife suffering from FMS. Thank heavens my husband is understanding, and wants to help me learn as much as we can about FMS. We are attending a conference in Florida in May 2002 with hopes of finding some help, or at least some answers. Blue Cross/ Blue Shield has changed our insurance coverage, and we have to pay ALL office visits, which are bi-monthly. The $'s are mounting. April 10, 2002 00:24:27 (GMT Time)

 I ALSO HAVE FIBRO. HAD IT FOR A LONG TIME BUT JUST DIAGNOSED IN 2000. I WAS BEING TREATED FOR NEUROPATHY TAKING THE SAME MEDICATION FOR FIBRO. I TAKE MY LIFE DAY BY DAY. I NEVER KNOW HOW I AM GOING TO FEEL WHEN I WAKE UP IN THE MORNING. SOME MORNINGS I AM FINE AND THEN SOME MORNINGS I START WITH THE MIGRAINE AND ALL OVER BODY PAIN. I FLARE AT LEAST ONCE A WEEK LAST SOMETIMES FOR DAYS AT A TIME. I HAVE A NEAT PHYSICIAN AND RHEUMOTOLIGIST THAT UNDERSTAND, AND A LOVELY FAMILY THAT ARE THERE FOR ME. BOTH OF MY JOBS ACCOMODATE ME. SO I AM ABLE TO WORK. I HAVE A HARD TIME GETTING MY HOUSE WORK DONE AND COOKING. IF I HAVING A GOOD DAY I WILL ATTEMPT TO CLEAN OR COOK. FIBRO IS NO JOKE. April 7, 2002 01:47:47 (GMT Time)

 I have had fibromyalgia for almost 4 years and it has changed my life in unmentionable ways. April 2, 2002 18:14:59 (GMT Time)

 I have fibromyglia too.I havent got to know a whole lot about it its been almost a year now that I have had it,also I have alot of other medical problems as well March 28, 2002 19:35:24 (GMT Time

 Thank you for your efforts and understanding. I would like for the world to hear,and understand,so maybe it will be easier to be heard March 28, 2002 04:02:26 (GMT Time)

 i have fibromyalgia..it has robbed me of my former life as i knew it and affected me, my husband and children and grandchildren..i am 43 yrs old and should be in the prime of my life and here i am not able to work, not able to clean my own home and most days in so much pain i want to die...i have been trying to get ss disability since 1998 and still have not been approved and i have been unable to work since 1997...i know there are people that do not believe in fibro because we look normal... March 25, 2002 04:03:12 (GMT Time)

 I was diagnosed with Fibromyalgia when my Psychologist discovered that I was having trouble with my hands and arms being numb. Also, I could no longer turn my head from side to side. At the time, I was drinking and using drugs quite a bit because I did not want to deal with the raw emotion which was opening up old wounds from abuse suffered at the hands of my father and my husband. I just ran away as usual in the old ways that were familiar so I didn't notice how bad I was getting healthwise. March 25, 2002 01:55:37 (GMT Time)

 If this helps one person it is worth it! God Bless You March 20, 2002 10:26:46 (GMT Time

 I have had Fibromyalgia for 46 yrs. Of course, I had it long before anyone knew what it was and was told so many times it was all in my head. I was referred to pshychiatrists and labeled as lazy because I could not do all the things people thought I should. I was in the hospital numerous times, once for a whole month, in traction. I lost many jobs, because I would work for a while until it became too much for me and I would be forced to leave because the pain would just become too great March 20, 2002 00:07:29 (GMT Time)

 I have just spent some quality time here going through your many pages. I, too, have FMS. I was dx in 1976 at the age of 26. I thank you for this web site...please keep up the good work. I will return. Janice Skinner March 19, 2002 14:32:34 (GMT Time)

 Thank you for a beautiful site. For me, the worse part of fibromyalgia, is the feeling of being alone. No one in my family has taken the time, to even try to find out exactly what fms is, and basically pretends that it doesn't exist. This is very painful indeed. I am expected from all of my loved ones, to just be the same me I have always been. To help them when they are in need, regardless of how I am feeling that particular day. After all, I don't look any different than I did before fms March 19, 2002 11:54:16 (GMT Time)

 Thank you so very much for the chance to include my voice to congress! God Bless! March 18, 2002 19:02:35 (GMT Time)

 I was diagnoised with Fibro last year. I also have degenerative arthritis, depression and elevated liver enzymes. I am 51 years old and have lost my job as a Respiratory Therapist (30 years). I was unable to work the long hours and to keep up with the physical demands. I have gone back to school and received a Master's Degree in Educational Psychology, but am unable to work at this time due to physical limitations. I fight every day with the pain of this disease and the lack of understanding March 18, 2002 17:53:38 (GMT Time)

 Just wanted to say thanks for being our voices in Fibro-Awareness to congress. I pray this is not in vain because my state sure treats it as no debilitating and no big deal. To many here its just considered a depression and a form of being lazy. I was once very much active. Holding down two jobs, youth leadership and church ministry works. Never was one to just sit around. Just wanted to say Thanks Melanie for taking our voices to Congress. God Bless you is my prayer.~~Kathy Kat7@Fibro-Angel.com March 17, 2002 22:53:04 (GMT Time)

 Thanks for bringing together a group of people to share their stories and support each other in these illnesses(FM,CFS, and others) that so many in medical communtiy fluff off. I am so happy to have found this site... March 17, 2002 08:19:03 (GMT Time)

 I'm so thrilled to have found this organization! The more I read about others the more I realize I'm not alone.There is hope! Thanks for getting this started. March 16, 2002 21:24:49 (GMT Time)

 Thank you for a wonderful site. I will send a link to this site to my "normal" friends that maybe they can get a better understanding of what we live with daily. March 12, 2002 05:19:38 (GMT Time)

 Members of Congress, I need to tell you of my plight and the effect it has on my family, my place in society, and my life. I was once a vibrant healthy, atheletic individual, who didn't include the phrase "I can't" in my vocabulary. I was raising two wonderful children, working two jobs, and of course, keeping the home fires burning. No More! Now, after 3 years of testing, including the medical bills I am still paying for, I was finally diagnosed with Fibromyalgia and all the complications March 11, 2002 17:59:10 (GMT Time)

 Devastated widow of physician, a hero who died barely 35 years old - without medical care or community support. He desired to make a difference and give treatment to those without funds. I, Also, am suffering from same condition. March 7, 2002 01:26:45 (GMT Time)

 My 13 yr old suffers from this disease we need a cure and representation to help all these people. Maybe one day there will be a cure. March 4, 2002 16:58:17 (GMT Time)

 I was dianosed with FMS about three yrs ago. I have been in pain for yrs. It has gotten alot worse in this past year. I trully wish that more people understood what it is like, to be in pain 24/7. I believe that if you don't act in pain all the time most people simply don't believe you. I have had people say that I act ok. Well, as you all know with FMS you can't go thru life always showing how you really feel. It upsets me that there is not more help for us. Thank you for this chance to talk Febuary 21, 2002 11:57:32 (GMT Time)

 I am a fibromyalgia sufferer and my sister has it and also my too nieces. We need everyone to please hear us and to become more educated on this disease. Febuary 19, 2002 02:50:42 (GMT Time)

 I'm just greatful for the efforts that are being made. I'm 53 and have had FMS all my life, with most of it being ignored. Thank you. Febuary 18, 2002 08:25:40 (GMT Time)

 I have suffered from fibromylgia since the age of 5 (I have vivid memories of pain) and may have been born with it. My mother says I "moaned" the first 3 months of life. We took two grandchildren on vacation with us last year. At the hotel I shared a bed with the granddaughter and my husband shared a bed with our grandson . They laughed about the snoring and they said, "Meme' you moaned." Every turn in the bed is painful. (This is 58 years later and I still moan.) Febuary 17, 2002 01:45:27 (GMT Time)

 Thank you soo much for this site. I just found it! I was diagnosed 6 years ago w/ FMS and CFIDS along with other diseases/disorders ie. MVP,DDD,Carpal tunel,Toxoplasmosis..... My time has all been spent on "surviv-ing" in an unknown world for life as I knew it was lost forever. The frustration of living w/ a hidden illness and not having human understanding and /or support is sometimes overwhelming. My greatest frustration now is lack of interest by our so called humane "Medical Pro- fession Febuary 16, 2002 20:56:36 (GMT Time)

 Have had FMS and CFS since 1994, they say this is not progressive, alothough I keep getting worse and worse. I am now totally disabled and not able to even get ay assistance to help me. The entire sytems is failing me, and its all so unfair. I will continue to hang in there, as I will not give up trying to get SSDI and Medicaid coverage. Has been over 2 years now, and I was recently denied by the Law Judge, even though my doctors have submitted evidence that I am totally disabled..... Febuary 11, 2002 16:40:56 (GMT Time)

 This site is wonderfully informative. Thank you for your efforts. I will be checking back often when I think that I am all alone with this wretched disease. December 11, 2001 20:30:33 (GMT Time)

 This is a beautiful website. We need to be acknowledged just for what we live with everyday. We have no choice, but to deal with the many symptoms of FMS and cope the best way we can. Many times I have felt helpless. It is so important to have emotional support. Without it, I may have given up on myself. My strength comes from Faith, Hope, and Love. I am a FMS support group leader in Wayne, NJ. November 4, 2001 02:37:04 (GMT Time)

 I pray that my husband truely knew how fibro effects me in my daily life. He gets so annoyed. I have become so scared that I will lose my ability to keep focus, and make my thought understood. I can not read books now; when I could read 3 or 4 at a time, thus Fibro took the greatest joy from me. Thank you September 12, 2001 01:43:35 (GMT Time)

 I wish I could be my old self again. I just can't get over the loss of her. August 18, 2001 08:15:58 (GMT Time)

 I am a Single Mom, an R.N. -Disabled due to Fibromyalgia / Systemic Lupus Erythematosus. It has been a long hard road I hope no one else ever has to walk down. July 20, 2001 08:44:56 (GMT Time)

 I appreciate all you are doing to raise awareness. Too many doctors and lawmakers have no clue as to what this syndrome entails. Some don't even believe it is real. To that I say, "Walk in my shoes for a day." July 19, 2001 00:42:12 (GMT Time)

 I woke up feeling like there was no one out there that would be of any help to me and for some reason I was drawn to my computer and endend up here, It TRULY AMAZES ME WHAT A COMPASSIONATE GOD WE HAVE! July 13, 2001 14:58:12 (GMT Time)

 Thank you Melanie for what you are trying to get accomplished. There are so many of us out here.I have had this since 1982 and was bedridden at one time. I am tired of hurting and can't get the medication I need for the pain because doctors don't want to give it. June 19, 2001 21:52:38 (GMT Time)

 I have have Fibromyalgia for 13 years. It has taken a lot of strength from me and I have a hard time coping sometimes. I take it day by day, because I feel that is all I can do. Thank you for making everyone aware of this debilitating disease. June 17, 2001 23:44:14 (GMT Time)

 I loved yor site! My health Story would take the form of a Book! I think It's great that you are making people aware of This Issue! We Have Benn OVER LOOKED far too Long! God Bless You! Warmly, Jill BTW you CAN email me at jscdo@home.com Please Keep me updated! If you need Help in Arizona..I'd be happy to do what I can! God Bless you & Your Efforts! June 14, 2001 12:35:01 (GMT Time)

 Working on the Walk for Awareness will be one of the most important things that I ever do in my life. It is the best chance I have for taking control of my life since I developed FMS and CFIDS until the cause is known there will be no cure. We should not suffer in silence and for our loved ones' sake, we should not. Public awareness is a step toward securing funding for real research. This is an important point in FMS history and I hope that many of you will be there to share it. Hugs, Ann June 13, 2001 23:36:32 (GMT Time)

 Hi. . .My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over. Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you exaustion. Try to have fun now! I also took Good Sleep from you… June 2, 2001 05:16:57 (GMT Time)

 DESCRIPTION OF MY ILLNESS My whole body aches all over as if I have the Flu all the time, especially severe neck, both shoulders, and arms are in pain constantly. Also, severe back pain both all of which make it difficult to hold up my head or sit comfortable for any length of time. I can hear crunching in my back & neck when I turn over in bed. My wrists are in so much pain that is hard for me to type, write, or hold the phone for any length of time. May 31, 2001 03:31:02 (GMT Time)

 I am very glad to have stumbled on this site as I was searching for craft items, as Fibromyalgia and Chronic Fatigue has robbed me of a profession I love and my husband - who like the doctors think there is a magic pill. They refuse to hear that the pills cause as much trouble as the pain. I hate what fibromyalgia has done to my life, but must learn to accept it and move on. I will be glad to see others in Washington and pray for some answers that only research can provide. May 27, 2001 07:06:38 (GMT Time)

 Count me in!!! While I am at this time in more or less a remission, I am still reminded everyday that this monster is still with me. I am so thankful for people like yourself and your partners that have the know-how to accomplish the things that most of us think about and have no earthly idea where to even start. May ALL OUR EFFORTS "SOAR ON EAGLES WINGS"!!!!! Bless you all. Thank you to Anne Marie for continuing to send me e-mails and keep me updated. May 24, 2001 20:37:48 (GMT Time)

 I am 45 years old, 3 year breast cancer survivor, still in remission. I was diagnosed with FMS and Lupus in Jan 1999. I have been very fortunate as I have been able to keep the discomfort to a minimum using natural products and supplements. I fear this may be coming to a close as I have suffered severe pain in my knees and hip joints for the last week or so. As much as I have read, I still don't know what to expect. It effects everyone differently. I support our cause. May 22, 2001 23:38:43 (GMT Time)

 Just one more comment here, I will write my story in full later and send it. My statement is that when the medical "community" hangs the word "syndrome" on something I think it is a real Sin (drone) when they don't know what it is or how to fix it It Is called a Syndrome (remeberthat most diseases started out being called "something else" till The Medical Community (or Drug Companies decided that they could make money from it) that they really come up with a real name for these terrible diseases May 16, 2001 05:06:09 (GMT Time)

 What a site! Awesome! I can only say that I have fibro with a recent diagnosis of myofascial pain syndrome and I want to just hide under the covers forever. I want to deny my pain and go on with my life. Can anybody relate to that? I keep plodding along at my job, enduring the pain and doing much, much less of the home stuff because if I do, it hurts too much and then I can't work. Too much pain you know? Who among us enjoys pain in vitually every fiber of their body? Thanks for listening . May 13, 2001 11:53:45 (GMT Time)

 I was lucky to be diagnosed fairly quickly - I only suffered the dibilitating fatigue for about 5 years. The unexplained pain has been going on for about 25 years, but I learned to work my life around it rather than let it stop me. Thankfully I never had to endure the doctor's telling me "it was all in my head", though they usually could not give me reasons for my problems. I am currently following Dr. Paul St. Amands protocol using guaifenesin and am experienceing wonderful results from it. May 10, 2001 12:38:05 (GMT Time)

 Ive suffered with fibro for 3&1/2 years after major back surgery.Im disabled from the fibro along with 2 major back surgerys where the fusion didnt take,i live on morphine along with 8 other medications and am still fighting to get my social security. May 9, 2001 21:44:37 (GMT Time)

 I have been a sufferer of Fibromyalgia , CFS and Osteo Atrhritis for 10 years. I am a 46 year old male and now have to live on social security as i am unable to work. At times I am unable to do anything but lay in bed or on the couch. Even this is sometimes painful. I as I saw here am also experiencing heart complications with it too. I also do not agree that this disease or syndrome is not life threatening. How can something that hurts so bad not be a threat to your life? May 9, 2001 15:39:10 (GMT Time)

 One of the things that Drs. are incorrectly passing on to their FM patient is that FM won't kill you. There is always a reason that you feel pain in body and it is because something is wrong with it. I believe I have had FM all of my life. In my early 20's I started having periods of time(weeks or months at a time) I would be in pain. Then I would do pretty well.About the time of my 30th birthday I started feeling bad again when I was 31 I got pregnant with my 3rd child. They say that pregnancy May 8, 2001 14:26:17 (GMT Time)***** Cont… I didn't realize I was getting so long winded. We need to get out the information that it isn't just a syndrome it is a disease and it kills. I have developed congestive heart failure and a list of other potencial harmful things. How could Drs. know it wasn't even anything at all to them until the last 9 to 5 yrs they don't know nothing of the history of the disease because it has no past. May 8, 2001 14:33:39 (GMT Time)

 I have suffered for 15 years from Fibromyalgia. I can no longer trust that my body will work the way I want it to. I cannot work outside the home; I cannot work within it most days. For those who need to support themselves and can't, I pray for help from those who have the power to give it. May 8, 2001 06:13:42 (GMT Time)

 I've had fibromyalgia for ten years and can not find a doctor who will Rx a decent opiat pain killer. No one will help me Does anyone know a doctor near me who is educated as to the cycle of pain someone who will write for ocassional flare ups. I don't want daily pain control just help fot the 4 of 5 days a month that I can not get up and go to work. May 2, 2001 02:13:00 (GMT Time)

 thank you so much for helping us..it is nice to know that someone out there cares..This has been such a horribe nittemare for me(my illness), it is like knowone has ever heard of it..Please...let it be heard, let it be known..thank you so much..god bless you! cfs, fibro. sufferer-32 yrs old. April 11, 2001 20:18:07 (GMT Time)

 I was dxd in 1996 with FMS, CFS. I also have TmJ, Migraines, Emphazema, Scoliosis, Degenerative disc disease in neck, Osteoporosis, OsteoArthritis, IBS, Spurs along Spine and that is the most of it. It's very hard to make it some days, but I truly believe that one day we will be more recognised and there will be help for all of us. God Bless us all. This fight against this d/d will be a wonderful cause one which I would be proud to be a part of. Love & Hugs, Karen April 10, 2001 02:11:12 (GMT Time)

 I have FM and I'm in pain all of the time. If I do any little thing I get so tried that I feel I'm going to die. I'm greatful to clouds for the support I get from the all too many people who have this DD. Thank you for this site. I will later send you my story and come back and read all the other stories. God Bless March 14, 2001 06:43:47 (GMT Time

 Thank you for sharing your stories with me. My mother has fybromyalgia and it has made me better understand. I wish you all the luck in your search for understanding and support. Hugs to you all!!!! March 11, 2001 15:06:37 (GMT Time)

 I started out with Fibro in 1984 as a result of a blown disc, and necessary surgery. They tell you it is muscle spasms and should go away. Here I am nearly 16 years later, fighting not only the hated Fibro but the Myofacial Pain Syndrome. It is not a Syndrome, it is real, it hurts, it eats your life up, some doctors give you 30 muscle relxants and "that ought to do it". Yeah right, for 30 days it just might!! Then came 2 more neck surgeries, 1988 and 1998, Cancer, hysterectomy, and now Severe Depressioon. March 7, 2001 20:53:14 (GMT Time)

 I suffer with this fms & cfs since 1998, I can not express the pain I am in, and I also can not find a doctor to whom understands me.I have been unable to work since 1998,I had trouble before that also but I had no choice but tryto hold a job.I was out more then I was in.I think it is aweful that there is no help for anyone suffering from this .I paray each day to find some relief. I have no life anymore, unless life is being confided to my house due to cfs and the pain I am mostly with out energy. March 7, 2001 12:21:31 (GMT Time)

 Fibromyalgia, where does it hurt? It hurts my sense of self by taking from me the definition of who I am and replacing it with the shadow of who I was. It hurts my sanity by always reminding me I am just one step away from depression. It hurts my self esteem by changing the way my body looks and feels, the way my mind responds or faulters, and challenging the ability of self reliance. It hurts my husband who must watch a wife struggle...daily, hourly, minute by minute. March 4, 2001 04:30:39 (GMT Time)

 I am a registered nurse who was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome about 4 years ago, after I had started working in an ICU at a local teaching hospital. It started with terrible pain in my ankles, then my back, then fatigue that left me in tears. What happened next? Loss of job, loss of faith in my doctors, the painful realization that the future I had planned for myself was now impossible, the painful realization that no one except my mother believed me March 3, 2001 21:47:24 (GMT Time)

 I've suffered greatly with this horrific and excruicatingly painful problem for over 30 year's now. I would like to see a whole lot more doctor's become aware of what we have and how our entire bodies suffer pain constantly. Just because this dreadful disease seems to be " invisable " , doesn't mean it doesn't exist and it's definately not "all in our heads ", we don't need shrinks, we need well informed physician 's who are open minded and are willing to actually " listen " to us !!! March 3, 2001 11:55:10 (GMT Time)

 I have suffered with FMS for over 27 years and have been embarrassed and humilated by many doctors who told me that it was all in my head or that I was a hypocondriac. Finally after many years of pain, weird spells and feelings I read an article about FMS in a magazine and started searching on my own and figured out what was really wrong with me. That is when I finally went to a rheumatologist and had my condition diagnosed. March 3, 2001 09:52:08 (GMT Time)

 I was diagnosed with fibromyalgia in 1991, and it took me two terribly long years to prove my disability to SS. It was very difficult to prove this pain and discomfort to SS and to others since it is an "invisible" disease. I could not imagine a day without the narcotic pain medications and muscle relaxers. Something needs to be done to make it easier for those in need of help to get it. SS puts you through the absolute worst time in your life to prove your disability. March 2, 2001 04:15:22 (GMT Time)

 It gives a hopeless feeling because no one understands the way you feel as your day to day acitvitys change. One day your feeling GREAT, and the next you can barly move for the pain. For me the Migrains is something I have to work thru as a Telecomminications Officer. (Good luck sometimes) It robs you of time and fun with you kids and familys. It can make you feel like you have a problem (in your head) rather than a physical problem with your joints/muscles. March 1, 2001 20:34:32 (GMT Time)

 I have been diagnosed with FMS for a year but had it for at least 12 years. Only now am I admitting my infirmaties to my friends. I know that I will be seen as different in their eyes now because I cannot explain to them what is wrong with me. I am a nurse practitioner working full time in a private office and I cannot tell anyone why I feel lousey -- So I must just be depressed -- that's what I think they'll say. OR maybe the stress has finally gotten to me. Febuary 28, 2001 21:37:53 (GMT Time)

My battle with Fibromyalgia started in February of 1999.I literally woke up one morning feeling like I had the weirdest case of the flu.Little did I know that my life would change forever.

I ran a low grade fever and had sore swollen glands for about 2 months.I became so very weak.Then the incredible unreal all over body pain began.Mentally I could have sworn I was in a different dimension.I couldn't sleep due to the great pain.I developed the weirdest feeling in my arms.It is so hard to describe . It's like a hurt that tickles that you can't reach.When I get this I can't sit still.All I can do is keep moving them and cry.

I will try to keep this very long story short and to the point.Through the next three years I battled to be believed . After all if I could manage to get makeup on and do my hair and look half way normal I must be exagerating my condition.After being told it's all mental and then later being diagnosed , mistakenly with systemic lupus, I found out that it's deffinately Fibro.It's amazing how even the most highly regarded doctors can make a person with this feel like a crazy mental case who really isn't feeling these awful symptoms.After all if it don't show on a lab test you must be making it up.I'll spare you every little detail and let you know what life is like.

I have tried so many different meds. and other things. The only thing that even remotely gives a little relief is the use of narcotics.I know this is taboo to most doctors , but if something else would work I'd be the first to try. If I don't use pain meds, I can barely walk or get out of bed.There are days that even with pain meds that I still have a hard time walking and coping with pain.I have to applogize if I jump around a lot but I have a hard time concentrating.

I have severe pain in all 18 trigger points, weakness , lack of sleep if I don't take something, fatigue , poor concentration and joint pain.There are days that 5 minutes seem like a whole day.On my worse days I hurt so bad that I can't stand or lay down or sit still . It's unbelievable. I have been married for 14 years and have a 12yr girl and a 11yr.girl.The guilt is unreal because I'm not a NORMAL MOM OR NORMAL WIFE.

I'm always afraid that my friends and family will get tired of this and ditch me.I don't want my kids to look back on their childhood remembering that mom was always sick.People all over need to be made aware of this so that we can and will be believed . It's like being tortured all the time from the inside out.This condition can be so isolating and undignifying. Please help us make everyone aware so that we can find a treatment or even a cure for this torturing condition.No person can possibly understand untill they've either experienced it or lived with first hand.

This little bit that I've shared barely even begins to show what I go through. Thanks for reading . Please help the millions of us that are living with this hell.
Elizabeth Mabry