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.

• Read Misty's Story
• Read Carla's Story

• Read June's Story
• Read Andrea's Story

• Read Linda's Story
• Read Shirley's Story

Help someone by sharing your story. To protect your privacy, actual names and places will not be revealed unless you instruct us to do so. Not sure how to start? We've provided writing tips & guidelines to get you started.

My Story - Misty Roberts
Patient/Owner of FM/CFS/ME RESOURCES

I contracted Fibromyalgia (FM) in the summer of 1978. At the age of 18, I was unable to walk unassisted. I lived in constant pain, and went from doctor to doctor in search of a diagnosis. At one time I'd been diagnosed with several different things ranging from Rheumatoid Arthritis to Lupus and Endometriosis. Finally, 10 years later, I was told I had a severe case of FM. A few months later I was also diagnosed with CFS/ME.

A good friend once told me that living with a diagnosis of FM and/or CFS/ME is similar to the seven stages of grief. It's true. When you're first diagnosed a strange feeling of peace washes over you. You now have a name to put with this horrible feeling. Then shock and denial sets in. You will probably react to learning of your diagnosis with numbed disbelief. You may deny the reality of the diagnosis at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.

Then the anger at losing the life you once had overpowers you. You may rail against fate, questioning "Why me?" You may also try to bargain in vain with the powers that be for a way out of your despair.

Eventually the anger subsides and depression, reflection and loneliness may set in. Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you. This is a normal. It's during this time that you finally realize the true magnitude of your illness, and it depresses you. You may isolate yourself, reflect on things you used to be able to due, and focus on memories of the past.

It's during this time that you need to remember that your life isn't over, it's just changed. How you handle the next step will determine how the rest of your life will be lived. You can try to focus on the positives, things you're still able to do, people who are there to support you, or you can be depressed and angry the rest of your life. It is your choice.

In my "stages of grief" it took me many years to come to the point of acceptance. I found that I could turn my illness into something positive by providing information about this illness. My thinking was that no one should have to feel alone and misunderstood. By working on my web site over the last 11 years I've been able to help people, and that has made my journey worthwhile.

My Story - Carla Bourg
April 17, 2009

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.

My Story - June
April 27, 2009

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)

My Story - Andrea
Feb. 12, 2010

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 Carribean 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 realise 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'.

My Story - Linda
Feb. 19, 2010

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 recognised 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 egyption mummy!!! LOL.

My Story - Shirley Bandy
Feb. 28, 2010

I have MS, Chronic fatigue syndrom 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, xrays, etc.

He did start me on Halcion 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 leisons 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 Neurotin, 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 rhythym. 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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