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.

I suffer from FM and CFS/ME. I believe in the power of people. I 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 these disabling medical conditions. I know that you find their stories helpful in your own battle with these disabling medical conditions.

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 - Pam Swearengin

I was diagnosed with Fibromyalgia/CFS/ME in 2003. The irony is the fact that my husband had been in an auto accident and I thought he had it. I had never considered the symptoms that I was having. I had always thought that was a norm for me. Even a couple of years after I was diagnosed I thought it was in my head and I was just lazy and trying to get attention. But as this disease progresses it takes away all doubt that it is there.

I have never been a high energy person, so since most people with fibro said they were workaholics I didn't figure it was what I had. Even when I was a teenager, I felt like something was maybe wrong. I had a bad memeory and aches and pains with no energy at 16. Now I am in pain always, I can't remember when I had a day where I had no pain at all. I have a severe anxiety of medicines so I am forced to be pro-active in my medicines. I guess I just wanted to put my story on here for the people out there who think they may not have it because they aren't workaholics.

When I was diagnosed nobody believed it, they refered to it as that "Fibro thing" like it was some elusive story they didn't understand or want to hear until my sister was diagnosed. Then it was real for them for some reason. I felt invisible more around my family than the public. But in the past couple of years they have been forced to learn more about it because they have all been diagnosed with Fibromyalgia. Weird how it runs in familys.

The only advice I can give to the ones first diagnosed is to listen to your body. Don't be stubborn and pretend you're "FINE". If you are not feeling well and have things to do, then you better figure out a way to put them off until later or rest whenever possible. Because Fibro is a jealous friend and it will make you pay if you push too hard. Rest often, eat well and stay away from soda, it hurts. lol.

Thank You

Pam Swearengin

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My Story - Madaline Franz

In 2003, I was working hard as a dog groomer, while living with my brother and sister-in-law. I was single but got involved with a neighbor man and became his wife shortly after. I had been hurt from a couple previous romances with men who made empty promises. This was different. I decided that it would be good to be married to someone entirely different from any man I had chosen before.

I had every issue that can make the average 'young' bride stress out so terribly. But this time, I was 49 years old. I had raised four beautiful kids and divorced my best friend. I had already dealt with all the woes of young motherhood, broken dreams and poverty. Twice over!

As a new, old bride, the stress started because I wanted to have everything go perfectly. I worked hard all day struggling with stubborn dogs with sharp teeth and nails. (Actually I loved the dogs, just the politics of the store was horrible. No matter what the condition, we had to get as many dogs done as fast as we could. That place just wanted the money.) Then I would run home to clean house and cook a dinner especially nice.

With my new husband, I inherited a different kind of family. I wanted them all to love me, these people I hardly knew. Their coping and communication styles were so different - they were a very somber, quiet, and distant people. I couldn't help but think, "why in the world am I here?"

I was a new step-mom to a very miserable 16 year old girl and to an 18 year old kid that was in jail. "What the hell am I doing here? This isn't fun." My new husband had quite a temper and yelled a lot. I felt like an idiot. I missed my son, who went to live with his older sister. My insides were boiling - my only son, my baby, is not with his stupid mother. I miss my girls; they are so sweet and lovable. And I especially miss Heidi, my little buddy, who moved in with her boyfriend. I hurt without her; she is a funny witty little angel. I hated myself.

Well it all hit me hard physically. First, I had what my doctor said was a stroke. I couldn't move and I couldn't talk. My brain was saying one thing and my mouth another. It was brief, thank God, and I took some aspirin and was better in couple of hours. But it was so frightening. Then I started noticing that I could hardly make it through a half-day. I started experiencing horrible exhaustion and pain. I also spent almost a month of bleeding every time I had to go pee. I was so exhausted and scared. Then I spent a week or two in bed with severe sinus infection/flu and my health has never, ever completely recovered. I felt like a huge boulder fell on me. It was as if every night, in my sleep, I was in a dryer being tumbled about. Then in the mornings, I would be dizzy and in so much pain. I lost my job.

I cannot keep up with the person I use to be. One doctor diagnosed me with fibromyalgia. Why not? Everyone else has that! Another doctor had brain scan done, thinking that may have multiple sclerosis (MS). The brain scan came back with white spots conducive to MS but the neurologist said no.

It is M.E. Or in the U.S it is called Chronic Fatigue Syndrome. The white spots seen from the MRI are from painful migraines, doctors think. I had an abnormal brain scan and I think I have lost some memories.

Even on good days, like today, I still have to remain laying down. I can no longer sit and paint or sit and visit. On some extra good days I can go to town and shop some, but I always have to come home and recline flat. And I always pay for it by sleeping for two-five days afterward. How long has this been going on? One day runs into another. One month into another. One year into another. I haven't moved. I am now 58 and I haven't budged. I can't.

I made the decision I must remain thankful and blessed. The alternative is to curl up and die. I am grateful that I have a husband that does love me and puts up with my condition. (After our rough start, we have learned how to live compatibly). I live on the side of a hill on five acres. I look out my window and get surprised by my favorite animals. One day a huge, beautiful wolf visited me. On another day it was a mama bear and her twins. Sometimes it's just a blue jay or a squirrel. No matter, I adore them all.

I have been doing so much better since I have met some amazing people who are also suffering from this very misunderstood disease. It is not just a syndrome - such a slap in the face for us sufferers!

I smile more now, I think about my beautiful grandkids and my family I have made, who have now grown into four, awesome adults. Anyone would be honored and blessed to have these kids, but they are mine!

I have learned, and am still learning; that my life is not over - it is just different.

I pray we get a cure someday soon. Although I am thankful for everyday, there are things I still miss, like walking my dogs or traveling to go be with my kids. I long to paint outdoors again, but without the pain and exhaustion. Someday.

Blessings,

Madaline

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