FM/CFS/ME RESOURCES - Living With Fibromyalgia & CFS/ME

 

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Living With Fibromyalgia & CFS/ME

Experts estimate that about 10 million Americans and approximately 3-6% of the population worldwide suffer with Fibromyalgia (FM). While approximately 4 per 1,000 adults in the United States are thought to have CFS/ME. These numbers show that you are not alone in your fight against FM and/or CFS/ME.

At FM/CFS/ME RESOURCES, we believe in the power of people. We feel that you can over come anything if you have support from other people. Living with Fibromyalgia & CFS/ME is a collection of personal stories from people living with FM & CFS/ME. We hope that you find their stories helpful in your own battle with these disabling medical conditions. Click on a name below to read their story.

Help someone by sharing your story. Not sure how to start? I've provided writing tips & guidelines to get you started.


Read Their Stories

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My Story - Linda

I was diagnosed with ME/CFS about 16 years ago, was ill for quite some time before that though. Since my diagnosis I have lost many, many friends & even some family members have decided I am too much of a burden. My hubby has had to give up work to be my full time carer. It saddens me that these illnesses are still not widely recognized for what they are. Just because the pain, fatigue etc are not visible others don't seem to want to believe.

I had a broken wrist a couple of years ago - that was visible. I was in a cast so people 'understood'. I only wish I could bandage up all the parts that hurt, then maybe they would at least try to understand. It would be rather funny though because if I DID bandage up everything that hurts I would end up looking like an Egyptian mummy!!! LOL.

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My Story - Carla Bourg


My name is Carla Bourg and I have Fibromyalgia (FMS). Since I am no longer able to hold down a full time job, our income has been cut in half and our debts keep going higher and higher. This is also known as the millionaire disease because of the medical cost incurred. I would love to rejoin the workforce but I can't.

They say that we are in pain because we are depressed. Well, I am not depressed. I am in mourning for the things that I have lost. I lost my job, my memory (mind), my vitality, all the things that made me who I am. I am not lazy. I loved my job. I loved going out in the world and helping people. Now, I am one that needs to be helped. If I am working on anything and I am interrupted I no longer have the ability to go right back to what I was doing. I completely lose my train of thought.

I was a tax officer at one of the nation's largest banks. This meant preparing income taxes for people with millions of dollars in investments. Now, I don't even trust myself to prepare my own. My short-term memory is shot. I can recall things that happened in my childhood but have trouble remembering what day it is. I can't remember the names of things. I get lost almost everyday. I don't know if the memory loss or the pain is the worse.

The pain is horrible. I have pain in all parts of my body. There are 18 tender points in FMS and I have all 18 and they stay active. Sometimes it hurts just to wear clothes. They said to exercise in warm water. I do this almost daily. While I'm in the warm water I am almost pain free, but then I get out of the pool after exercising and as gravity sets in so does the pain. I do not take narcotic pain pills because they really don't stop the pain.

FMS is not cancer by medical definition but it eats up the life that you knew just like cancer can. FMS is a disorder that causes pain in your muscles and joints. It may also cause poor sleep, headaches, and stiffness or muscle aches to name a few. FMS has a whole list of cascading symptoms, such as, Chronic Fatigue Syndrome, Myofascial Pain Syndrome, Carpal Tunnel Syndrome, Mitral Valve Pro-lapse, PMS, Raynaud's Syndrome, Rheumatic Diseases, Irritable bowel syndrome, etc. Every FMS patient is unique. Symptoms range from mild discomfort to complete disability and may vary from day to day.

I also experience "flares" periods of time in which pain suddenly occurs or increases in intensity. These flares can be triggered by emotional stress, fatigue, depression, or even the weather. Sometimes just a gentle touch sends spasms of pain though my body.

FMS is one of the most commonly found disorders of the decade. No one has a clue as to the causes of this disease or what the cure might be. It is especially confusing and often misunderstood condition. Medical studies have proven that FMS does exist. I want doctors, lawyers and insurance companies to take notice of us and realize that we ARE sick. We are not lazy. We were prior multitaskers; Type A personalities (perfectionists) and Type B (caregivers).

I often look healthy and have no outward signs of pain or fatigue. On one hand this is good but then people judge me by saying, "well, you don't look like you are having any difficulty." This is very discouraging for me. I am not able to do the things that I once could but are judged as just sloughing off. Believe me this is not the case. I would love to resume my live and do the things that I use to do.

I missed being able to really play with my grand kids. I use to ride bikes, roller skate, play ball, etc. I really miss being able to do these things and I feel that the kids are missing out also. I want them to remember an active grandmother not someone who was always in pain.

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My Story - June

Hello!! I am pretty new to this group. I thank everyone for making me feel a part of!! I was just diagnosed with Fibromyalgia, Chronic fatigue and Lupus a year ago. Also I have Osteo Arthritis. I have been learning so much about my illnesses thanks to the two Fibromyalgia groups I belong to.

I have read that stress and trauma can bring on Fibromyalgia pain. Stress, I have found out for myself, makes my pain much worse too. I believe my physical abuse from my children's father has much to do with my Fibromyalgia He beat my head open on the floor and I thought for sure I was a goner. Luckily my sister shoved her way into the door and pushed him off of me just in time. He got mad at me another time and cornered me in the hall. He hit me in the mouth and broke my new dentures. My jaw was knocked out of place. Another time he threw a portable radio and hit me in the back, that doubled me over in pain.

I nearly killed him with a butcher knife and do not remember anything until I heard my sister tell me to give her the knife, twice. He was going to beat me for cooking something he didn't like. He bent the pan with hot sauce and burnt his hands, then he blamed me. I knew I was in for a beating. I could have spent my life in prison too. I never did hurt him. Well I have had so much abuse from my childhood on. I've had five husbands. The last husband I had married twice, he passed away a year ago.

I really believe I had Lupus at least 15 years ago because I was diagnosed with Schlera derma but my skin was fine so the doctor changed his mind. I recently found out that Lupus can mask itself as other illnesses. My daughter has Lupus and Fibromyalgia and CFS too. My new doctor decided to test me when I told him about my "all over" body pain, total weakness, and how I feel exhausted all the time.

I was a preschool teacher for about 12 years. In 1999, I missed a whole month of work because of weakness and feeling very bad. I was able to get disability at that time. In 2000, I moved closer to my youngest daughter. I met my last husband, number 4 and 5, when he moved from Las Vegas to the apartment complex I lived in here in California. He was Bipolar. He'd also gambled daily for 23 years. I had been alone for 20 years. He was so much fun and so affectionate. I fell hard at my age. The next year was so up and down. He would break up with me over the silliest things and I would go over and convince him to make up. That happened three times.

One day he promised to quit gambling if I would marry him and I did. He just never really tried. Again every couple of months he would blow things so out of proportion, run off somewhere and gamble until he was broke and come home. He spent money we needed for necessities. He wanted me to let him handle the finances but I wasn't that dumb. In love yes, but not stupid. His cousin thought I was stupid for remarrying him, because he tried to sell my mobile home out from under me so he could gamble.

I finally had enough, we were apart about 10 months. I missed him and could not get on with my life. When I think about it, I was really quite stupid where he was concerned. Anyway, we got back together a few months before he passed away. I endured so much pain, due to his ups and downs. He would love me one minute, and cuss in my face the next. I have never met anyone that could get so hot and cold so fast!! Those few years we were together yet separated I endured so much pain!! These last few months I have been in so much less pain I can hardly believe it is the same body!!

My life is more peaceful now than it has ever been. Even my flare ups are not nearly as bad!! I don't take Prednesone or pain pills anymore. I take two Aleve's sometimes and that is all except my Lupus medication. I am able to do things I couldn't do before. For all these improvements I thank my God daily!!! I hope you see from my story that I feel in my heart, that all of the years of abuse from my mother and just about every man I have ever known, is what brought on my Fibromyalgia. I definitely know that the abuse (my story only outlines the abuse I've endured throughout my life) made my pain so much worse.

I am learning to do whatever I need to do in order to be as pain free as possible!! Living alone sure helps that too. Being lonely gets easier all the time, Plus my kids have really put up with a lot of my ups and downs due to men and my abuse. They are so happy I am doing so well with out a man finally. (LOL)

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Andrea & Horse Fred My Story - Andrea

Hi my name is Andrea and I was diagnosed with FM (Fibromyalgia) by a Rheumatologist 13 years ago this month (February 1997) but have had on and off symptoms since I was 9. I also have Bipolar (2008) but have had cycles since 1991, IBS (1998) and Ovarian Cysts.

I led a fairly active life before I was diagnosed- I wasn't particularly sporty but in my later teens I did rock climbing, hill walking, and horse riding (from the age of 5). I didn't have a dog in my later teenage years but managed to find plenty to take out!! At secondary school I started doing the Save the Children Fund sponsored walk- I did 10 years and 200 miles and raised a lot of money for the charity!!

In my 20's a lot of things happened- I had a traumatic relationship with my ex-husband, my father died of cancer 4 months before my wedding, I was getting little or no support from my family or his, I was sexually assaulted on our honeymoon in the Caribbean and then had a miscarriage when I got back. :( :( I also had 4 car accidents in my late 20's which have contributed to the pain and discomfort I am in now.

The real symptoms started 2 months after the wedding in the September of 1996. I was working 2 jobs, both care jobs (one for children and one for adults with learning disabilities) and I was struggling to cope. I stopped horse riding for 6 months (at the time I didn't have my own horse) as I couldn't understand the pain I was experiencing and had numerous humiliating tests done with GPs then the Rheumatologist who eventually diagnosed me with FM and gave me a leaflet and sent me on my way saying 'It'll be gone within 7 years!!'

So here I am, exactly 13 years later. I went back to see the same Rheumy in February 2007, unfortunately I was in a Bipolar phase so was quite chirpy and a bit loud and although he agreed I still had FM it 'wasn't affecting my life' very much. In October 2006 I had been diagnosed with Dysmenhorrea (excessively painful periods) and Menorrhagia (excessive and prolonged bleeding) and my weight was starting to creep up slowly (I was a size 12 when I met my 2nd husband) due to lack of exercise, medication and comfort eating. I was then diagnosed with Ovarian Cysts in April 2007 and since then have been on Cerazette (pill) to control my periods and I haven't had one since then.

I will be 40 in October this year. I feel like I have had most of my life cruelly taken away from me, some days I feel well (partly due to the Bipolar cycle) and some days I struggle to get out of bed. I do now own my own horse and I still try to ride him (he is looked after by someone else for me), 2 lovely dogs and 2 cats. My second husband is extremely supportive of me (my first husband went through all the symptoms/diagnosis/lack of support stages and didn't understand what was happening to me) although I haven't worked since 2005 he manages to provide for both of us and he owns our home, we have 2 cars (so I have a bit of independence) and a good family/friend network- my good friend Marylyn used to be the Chair of our local support group but has retired through ill health- we still talk on the phone and I try to see her regularly!!

I hope reading this will help others realize what FM can do to you- it's not terminal like cancer but you have it for the rest of your life as there's no cure. I'm hoping that in 10-15 years time with medical breakthroughs I may still be able to live a more 'normal' life'.

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My Story - Shirley Bandy

I have MS, Chronic fatigue syndrome plus Fibromyalgia. The real battle started in 1985 when very few doctors thought that all of it was in my head. I couldn't sleep, started falling and when your head hits the concrete is something else. My primary doctor just didn't have a clue to what was going on. All sorts of tests, X-rays, etc.

He did start me on Halcyon plus xanax. I finally started to get some sleep. I was walking, doing yoga, until it got to the point that I couldn't get up off the floor. Actually some of what I went through I just had to laugh at. So ridiculous!! I think my late husband thought I was dying. Me too, at times.

To make a long story short, my primary doctor finally referred me to a neurologist. Dr. John Harney in Richardson Medical Center in Richardson. TX. What a blessing. Finally, someone who didn't look at me as if I were crazy. He is the one who confirmed I had fibromyalgia plus. Asked what the plus was. Told me he didn't know but we were going to find out. Before I go further, Dr. Harneys wife has fibromyalgia.

Well after MRIs, MRAs, etc, etc, etc. He found lesions in my brain. Evidently the fibromyalgia was masking the MS or the other way around. You know when you go to a doctor and tell him that you legs and torso weren't cooperating with each other and he knew what I was talking about. Through a slow process, walking, exercising, mild pain pills, I could go on and on. But I am now 75 years old and have lived with this since 1985 and probably longer. I can look back now and realized I had had many symptoms for a number of years but I had always been so active and exercised, walked, did yoga I held it at bay longer than one would normally.

Having gone 25 years now I am on a routine of medications. The main one being Oxycodone, high dosage, Gabapentin, generic for Neurontin, generics for xanax. Prozac and amitriptyline. And to top it all off, taking some medicines because of taking other. When I moved to Tulsa I tried finding a primary doctor who didn't look at me as if I was out of my mind and hooked on drugs. I am happy to say he started listening to me and he is helping me. Trying to find a pain management doctor in the Tulsa area has not been easy. The ones I have contacted want only to treat the spine and the spine only with injections of steroids. One doctor had tried steroids on me and well, it literally blew my mind. I thought I was losing it. So glad when I got to go off of them. And the Neurologists who have been contacted don't work with Fibromyalgia. They act like they are afraid of it. My primary doctor is now being very aware of what is happening to me. Or at least to the point of knowing it exists.

I am one of 5 first cousins who have it and know of at least 2 second cousins. Also, my oldest daughter and the oldest daughter of one of my 2nd cousins. This number includes 2 males. One of them is on disability. It has really slammed him hard. Massage therapy, wish Medicare would approve it. It helped me for a long time until I hit where Medicare had to be my primary source then had to stop. I could go on and on.

I was living in Texas when I was first diagnosed. There for 43 years. Then I broke my right leg. Both tibia and fibia. A shattering to me. It was the most horrendous thing to ever happen to me. I sold my home about 2 years after my husband passed away. Then broke my leg. Spent almost 2 months in the hospital. Something knocked my heart out of rhythm. I moved to Denver and was there for a year and a half. Then here to Tulsa this last October. Pain specialists hard to find who will treat it. If anyone who might live in this area knows of a doctor who would treat Fibromyalgia and/or MS would appreciate information. I've kinda rambled and finding out my spelling isn't what it used to be. Heck, a lot of me isn't what it used to be.

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My Story - Debbie Nugent

My story of fibro has been a long journey of trying to find out what was wrong, and that I didn't make it up in my head! After seeing two quacks I finally found Dr. C. Clinton, she saved my life, she found out along with FM I had RA and Sjorgrens Syndrome and it was so bad it tipped the fibro off the charts! So after putting me on the regimen of Plaquenil, Leflunomide and Prednisone for 3 months. I went back today and all levels have leveled off and doing lots better.

She upped my dose on both to a regular dose, since I had been on a half dose 'till I got used to it, now today she added the generic lyrica called Savella that is supposed to help me sleep better, and relax and not be so nervous!! Hope this helps some of you, enjoy reading your stories it helps. Also, she gave me VOLTAREN GEL 1% rub into neck n back n wrists 4-5 times a day and it works!!! Yeah, finally a upside I believe!!

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My Story - Marie Robinson

I was doing a small catalogue job in Birmingham UK with my hubby Alan, when one evening we had delivered the customers orders and I felt a slight twinge in my right hip. I thought nothing of it and I carried on with it and then I said to Alan that it was getting worse, this was in 2002.

I went to my GP who at first said it's from pulling the basket on wheels with the catalogues in and I took his word and carried on, after about a month I couldn't get up in the morning without crying and being low with what was wrong with me and I went to the doctors again and he put me in to see the specialist.

A month later I went to the Birmingham city hospital and they said that I had damaged the muscle over my right hip joint and bone. They said we will inject your hip with steroids. Believe me if he had of been a woman I would be in prison right now for murder because I shot off the bed. I went home and had a bath and had a early night and finally went off to sleep. I woke up at 7 am and when I put my legs onto the floor I collapsed on the carpet. I screamed to Alan who ran from the front room. I couldn't walk and had so much pain I have never felt it like that before even after a child in 1989 and a hysterectomy in 1999 at 30 years old.

I went back and they sent me to the specialist again who did a few tests with pressing the points within the body and blood tests and it showed that I had a virus somewhere in my body but didn't know where and from the pressure points too diagnosed the fibromyalgia.

It's now 2010 and now I still find it hard to cope with. Before I got this smelly pain that tries to tell me what to do and for how long, I used to do weights and yoga. Now I can manage the physio small exercises that help and I feel that yes I have this thing but it will never control who I am.

The worst part of this, and I don't know if any of you have this problem too, but I forget things. I will be trying to say describe a fairground big wheel and I one day described it as a big thing the same shape as what a car has 4 of that go on the road and people can sit on seats and go round. Please if anyone else has this problem then I will feel at ease really as otherwise I will worry that I have something else which I don't want.

I am 41 yrs old and I have had a hysterectomy, laparoscopy twice through the belly button to try and have more children but told at 25 years old I can't. Two big toe operations, pelvic inflammation disorder, irritable bowel syndrome, and my pelvic bone tilts and so I have had enough. All these things only make me stronger and fibro is just another on the list but I will not let all these things break me.

Thank you for listening to me and sorry if I went on too much, but apart from my sister-in-law who has fibro, I find it hard to make other members of my family understand this. I am one of 10 kids me being the youngest of the first 5. I sent them info on the changes I would be having to swallow in my life and to have some support and all they say is, well if you did more in the day you wouldn't nap with fatigue and so you see I have no support apart from my husband son and sister-in-law.

All my love,

Marie

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My Story - Anonymous

I am a 64 year old mother, grandmother and am thankful that I now have a doctor that understands.

I was diagnosed 5 years ago with Fibro, however we believe I have had it most of my adult life. I had the weakness, pain, IBS, dry eyes, and many other symptoms of auto immune. I always test high for inflammation in my body but my RA is negative even with a positive ANA. So I am sort of an odd duck.

I spent years in pain and misery before my MD sent me to a pain specialist who diagnosed me with Fibro. My mother had Lupus and actually died from complications of that disease. At this point we have tried the new medications for Fibro, including Lyrica, Neurontin, and other antidepressants. The only thing we accomplished with that was arrhythmia, so I am on muscle relaxants and pain meds. I take Opana (timed release Morphine) twice daily, Soma 3 times daily and Mirapex at night for restless leg. Sometimes I feel very sad because I have no energy to do anything with all the drugs I take. I am grateful for pain relief, when it comes. I also take Vicodin for breakthrough pain, unfortunately that is way too often.

Even though I am in pain most of the time and never seen a day of remission, I still manage to function life at a low level. I wish I could take walks and enjoy life like I used to do however that is gone and I just find little ways to enjoy my days. My son built me a wonderful little garden that I can so sit in the shade look at my flowers, enjoy the birds and swing, so life can be good even on the bad days.

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My Story - Jacqueline Golburgh

There was a time long ago when I used to sing torch songs with a big voice. I'd sing around the house, when the kids were little. I'd dance with wild animated abandon. I don't know if I was happy, but the singing and the dancing helped. Somewhere along the way, the singing stopped. Then my body failed me. The dancing had to stop. With no support, emotional or physical, and plagued with inexorable, raging headaches, with constant sadness - I forged ahead. I had three sons to raise. I had a job to do.

The job was done long ago. I loved gardening, and planting flowers. The physicality of the work, picking up hoses, watering, taking care of all my beautiful plantings, was joy for me. My failing body stopped me from doing these things I loved. I had potted plants, I dragged around for years. Moving from one house to another - always moving; going down, down, down! Finally I just stopped watering and let the flowers die. I HAD A DEAD GARDEN. I used to play music all the time. Music blasted out of my windows. I don't know why, but the music stopped!

I seemed to be doing a little better, getting around a little more with my fibromyalgia. Seemingly, suddenly the damn broke and all I did was cry ...I felt abandoned! I was married, but there was nothing - no time, no affection, no money. The world was swirling around me, and I was there in my room, crying and lost!

I was on "methadone" at the time I wrote this. I became more and more depressed and sickly. I'M HAPPY TO SAY I got off this drug and reclaimed my life. I still live in pain, but I am a happy person (who accepted this "new me") and I try to stay positive and look at the bright side of my life.

Jacqueline Golburgh

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My Story - Sue Aldous

It seems like it all started with Whip Lash from a car accident. I got worse than anyone expected, it took longer to reach an acceptable point in my misery and that was the beginning of the slippery slope.

My pain got to a point where I could no longer do much of anything although I pushed myself to the limit just to cope with day to day life.

Then I hit the proverbial brick wall and ended up spending 3 years in bed with extreme fatigue, pain, confusion, vertigo and an endless list of symptoms. One day I woke up and the extreme fatigue had lifted, I did not know why this had happened but I worked on rehabilitating myself to a point where I had a life that I could be content with. It was not a good life but I did not think it could get better.

One day a lady at the grocery store told me to look into lyme disease, she told me to look at the symptom list and see if they rang true for me. I had 48 of the more than 70 items on that list!

I was clinically diagnosed by a Lyme literate doctor and before I knew it my quality of life was improving in leaps and bounds. It turned out I tested positive for Cat Scratch Fever and Rocky Mountain Spotted Fever. I remember the spotted rash that had spread up from my legs up to my chin. I was too sick at the time to even consider going to the doctor. That was a mistake that could have killed me!

I developed pneumonia and was dragged to a walk-in clinic by a good friend. The doctor there was so concerned by my condition that he gave me a very strong antibiotic that was new on the market. The antibiotic cured the pneumonia and in hindsight I believe it removed the extreme fatigue I had been suffering all those years.

Knowing that I have lyme and some of it's co infections and having done much research I now realize that my Fibromyalgia and eventual chronic fatigue were likely caused by these infections, not some mysterious auto immune disease, nor was it because of abuse or any of the things that had been rammed into my head as a Fibromyalgia patient.

My Lyme doctor figures I have had bacterial infections since I was a child. He determined this based on my medical history. It all makes sense now the elevated IGM, the positive ANA even the thyroid and other hormone issues.

We all need to learn about Lyme disease no matter where we live in North America.

Sue Aldous

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My Story - Genine A. Proietto-Chesky

I have Fibromyalgia. It appears to be genetic. Mother has Lupus and my Nan had Osteo and Rheumatoid Arthritis. Wish I would have known that sooner, before I had children. My illness has taken the life of my youngest daughter, My youngest son has Noonans Syndrome. Fortunately he had made even with his 1% chance of being born alive. He sure did have a struggle even before he was born and yes his medical care is a gotta stay on top of the game thing. I do have Children's Hospital of Philadelphia (CHOP) nearby and they make it as easy as possible for me. My two older children have been suffering from severe migraines from a very young age as I did. Not sure what the future holds for them.

I believe in modern medicine and living here in the Philadelphia area turns out to be quite a medical treasure. We have some of the top rated hospitals in the country. For myself, unlike the children (CHOP will stop at nothing to help an ill child) before I had visible signs of disease, and yes there is damage and visible signs their just not in your blood work, well some things are but often mistaken for another disease. I complained and had specialists one after another.

After the loss of my daughter, in grieving depression the medical drugs weren't helping so I found comfort and instant gratification in street drugs. They helped me with all of the pain and kept me going. I did however continue to seek medical help. My Family Dr. told me that psychiatric help was not what I needed. He made me talk to him about everything he kept telling me that its not in my head that there's something wrong because I could not be a medical mystery. After every specialist I would see he would read the report and say to me dump them lets find another. And I did keep going.

After the birth of my youngest, his care was non-stop. I couldn't keep on as I needed to so once again I found comfort in a prescription medication. I had to take care of him, my other children, housework and a part time night and weekend job. And that Little One only slept an hour or two at a time. One more pill and I could get the dishes done. About two or so years went on like that. They became never enough even after I had started to use them in an IV manner to say it polite. I could no longer take the pain and I could no longer go on as I was.

I had attempted several suicides. And I kept failing. I was so addicted to the pain meds that 20 bottles of pills couldn't do the job. On my last attempt to end my misery I was put into a State Hospital. After that experience I really learned how to trust in my dr. I did what I could I learned I had limitations. The osteoarthritis destroyed my knees. My Orthopedic dr. gave me a miracle called synvisc and he looked at my lesions and Rheumatic lumpy looking fingers. He referred me to a Rheumatologist.

My first visit he told me its severe Thyroid Disease or Fibromyalgia. My second visit he told I had Fibromyalgia. I explained to him my drug abuse. He asked me to consider that maybe I was abused by the drugs. No one had a diagnosis for me but they all prescribed all kinds of narcotics. He told me I'm not crazy at all I was just plain desperate for help and I never will be again. Narcotics are not a treatment and neither are steroids.

My third visit with him will be in just a few days and I am already feeling almost like a new person, the one I always wanted to be. I cried to him, I said "I used to be pretty, I used to work for Chanel". He is so empathetic to the struggles that I have suffered through. I'm saved in a way. Yes I will still suffer, this is a Chronic Pain Disease with no cure. My lifestyle change and proper treatment are keeping me well. After 10 years of complete and utter hell it's almost unimaginable how well I'm doing in just 5 &1/2wks. I have every symptom this disease has to offer. And I choose to go on and fight it. I wrote this as simple as I could. As time goes on I'm gonna keep getting better and fighting harder.


Eight Weeks After Diagnosis

There are times I want completely out of my life. Unfortunately for me on meds and so many failed attempts I'm afraid that if I should fail again I will be placed in an institution forever. So I live. Is this living? My husband was never quite the understanding type, but yet has never left my side. I hate him. He is so controlling on every level. In a way I can't blame him, I think that maybe he is protecting the children. I always try to see the better but it's as if I have to scrape it off the floor to look for it.

Sometimes I'm sure my boggled mind makes no sense. I have found a tremendous comfort with my online friends who also suffer such pain as I. My husband thinks that is completely insane. I want a divorce. I have to end the fighting and controlling. He or someone in his family will review or report to him what I've said to another. No one understands FM. No one in my home anyway. He says (yells) "Go on tell your fucking life story to complete strangers. Keep doing it cause I'm using it against you and I'll get the children. You're fucking insane. All those meds you have you'll never get them."

I can't possibly go on like this. What has my life become? I say that I want to leave to end the fighting and he uses my leaving to continue fighting. I cant take this any more. And because I've been unable to work for a few years now, all the money is his. And he decides when I will see a doctor or refill my prescriptions. I don't believe that every four to six weeks taking me off of and antidepressant and FM meds is helping me to get better.

I'm so tired of fighting and trying to make people believe that I'm not crazy, I have FM. No one here really cares about me. Its only what will happen to the children if they are with me. I spent the entire pregnancy of my fourth child at the hospital. Born with severe problems and major healthcare needs no one is there then. Only me. But when it comes to this end of marriage. They (husband and said family) will take my children away from me. I guess I will continue to scrape the floor for encouragement. It's got to be there maybe somewhere under a flood of tears.

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My Story - Janie Lierlee

I have suffered from fibro symptoms all my life but was officially diagnosed 8 years ago! This past week I was diagnosed with CFS/ME along with epstien barr, cmv, ra, oa, rls and narcolepsy. All these diseases overlap and cause devastating pain and tired, sleepy feelings.

The Doctors say that fibro & cfs are not progressive, but after suffering for 33 years I strongly disagree. This has most definitely gotten worse. I have been practically confined to bed for over a month now. Even folding laundry zaps every ounce of strength I have! We need a cure!

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My Story - Sofa Karen

Six years ago my life changed in a way I could have never imagined. I had the career girls dream lifestyle. And to top it all off, I met a wonderful man (so wonderful, we have now been married for nearly 5 years!) Life was GOOD....and you know that saying 'you don't know what you've got until you haven't got it'? Well, it's true!

The 'crash' happened after a wonderful weekend with my best friend in London (most grateful for not deserting my best friend when I met Mike as I have needed her more than I could ever have imagined in the last few years!!). I was on the train on my way back to Nottingham and I remember feeling 'odd'. I felt like there was a big black cloud over me. Little did I know, that it was the start of 6 years of being ill.

I felt awful. I was exhausted. I spent days at a time either in bed or on the sofa. Everything was a major effort. Even simple tasks like having a shower felt like I was climbing a mountain. It took about 18 months but eventually I got a diagnosis of M.E./CFS. Once I found out more about the illness, I was horrified. Many people with M.E. are ill for a really long time and many never recover. This was just unthinkable to me. There is no conventional treatment but there is an overwhelming choice of alternative treatments. I learnt that people do get better but it soon became clear, that what worked for one person did not necessarily work for another and finding the right treatment for you is a challenge in itself. From the day I found out I had M.E., I have been desperately trying to get better.

The illness is a roller coaster. Some days/weeks are worse than others. I could have a week at a time when the furthest I got was the sofa. On bad days I would not have the energy to get out of bed before lunch time and then only make it as far as the sofa. Even having a shower was too much for me. On other days I would manage a small walk or coffee with a friend before having to lie down again. But even on a good day, what I could do was minimal before having to lie down. Life has been a careful balancing act in the last six years of small amounts of activity followed by large amounts of rest. And if I 'overdid' it I could spend a week recovering. I won't pretend it hasn't been tough. There are times when I have felt so unwell I have been desperate beyond belief. The frustration of not being able to work crippled me at first. My whole identity was wrapped up in my career. However, human beings are adaptable and as time went on I found a way to adjust to my new situation.

There have been some good times too. Mike not only married me, even though I was ill but he also takes very good care of me and never resents it, well if he does he doesn't let it show! Our 'thing' is traveling and we have tried very hard not to let me and my M.E. get in the way of that. We have managed to have lots of adventures throughout the last few years and this has played a huge part in me holding on to my sanity. I could not have done these things if it wasn't for Mike. I am also blessed with the most amazing best friend who works round my energy roller coaster, always knows exactly the right thing to say, supports me in my drive to get better and brings much needed laughter into my life.

On a personal level it has been a huge learning experience. Some lessons maybe you would expect, some maybe not! Most importantly, I have had to learn that I can still be 'Karen' even if I am not achieving anything (a hard lesson for a type A personality...). In no particular order, I have also learned to count my blessings, make the most of every second when I feel okay, be kinder to myself, that yoga is not for wimps, to be more empathetic to others, to accept my role in becoming and staying ill, how to enjoy life without a 'normal' social life, that it's okay to be dependent on a man, if you are open and honest with people they can be wonderfully supportive, that the mind is so powerful and has a huge part to play in recovering from an illness, some people will understand, some people will never understand, it's okay to cry as long as it's followed by picking yourself up and - most importantly - you can still look fabulous without spending a fortune!!

And as I reflect on my journey, I realize how far I have come. I have improved so much recently. I have tried many treatments along the way: CBT, Pacing, The Lightning Process, Meditation, Yoga, EFT, The Optimum Health Clinic, Supplements (millions..)The Gupta Amygdala Retraining Programme, Dairy and gluten free, Vegetable juicing, Osteopathy, Hypnotherapy, Sheer Hope and Faith! I haven't found one treatment that has been a miracle cure but I am sure that each one of these has helped me move forward in some way. I would be happy to talk to anyone about any of these treatments. Or you could look at my blog, where I talk about my experiences in more detail. 'Sofa and the City....' Living with M.E./CFS but still totally fabulous!!

Sending you all love and energy and wishing you well in your recovery journey xx

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My Story - Davna

I was diagnosed with fibro almost 5 yrs ago but I had it long before this an didn't know what was happening to my mind or body. The day I was told I had this, to me it was another illness to my list, but I didn't know it would be a nightmare I realized I wasn't lazy I just didn't have the energy to do this or that.

My family don't understand, they think I just spend my time on my laptop. If I didn't have the connection to someone on the Net, I'd go crazy as sometimes it's all I'm fit to do. It's a lonely world to be in, as all you feel is loneliness when fibro comes at us crazy. :(

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My Story - Beverley

Hi there. After reading everyone's story it seems there is a little bit of my story in everyone's. Mine started with a weekend off work and at a football tournament with my son my friend and her son. I just didn't feel right knew something was wrong but couldn't explain it. It was as if I knew I was with them but not apart of them, like I was watching life at a distance.

I went to work on Sunday had trouble putting on my uniform hands were swollen and everything felt as if all the noise in the world had either stopped or been turned down. Monday took me such a long time to get out of bed. In my head I was still doing things at normal speed. My work uniform was tight and I had to force my shoes on, face swollen whole body was. I had nurses report then left quickly as I was now beginning to panic.

If it wasn't for the fact my friend the nurse in charge been delayed to make a phone call and I realized I needed help I would have either been found collapsed with a patient on me or in the process of a break down. I was rushed to medical centre that evening.

To cut a long story short it was found I had a virus that was attacking my white blood cells. Me thinking it's just a virus be back to work in a few weeks lol. Eight months later virus left me how kind to be replaced by fibromyalgia/CFS.

That was in 2002. I have a large blank spot in my memory of 2 years, I just remember doctor after doctor test after test a lot of darkness and silence. I don't even remember crying in pain. I think my body just shut down and also my mind. I know now that I was mentally ill which is a taboo subject in its self but it was all caused by fibro and it's add on illness.

It takes years to accept. I know it did for me. I still have fibro 8 years later but now it doesn't have me in total lock down like it did then. I have good days, bad days, good weeks, bad weeks, and bad flare ups still too but if I can stop my mental and physically strength from colliding I cope but when the crash happens I have to button down the hatches and just go with it. xxx


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