Share, Send, or Save

Real Fibromyalgia Patient Stories
and Tips

Real Stories From Real People

Everyone with fibromyalgia is different. You may find that some of the tips about living with fibromyalgia will work better for you than others. So keep an open mind.

You should also realize that education is critical. You can reduce your symptoms. Try to learn more about fibromyalgia, how to reduce your symptoms, and what works for you.

The following stories and tips are those of real fibromyalgia patients. Here, you'll discover how others cope with this painful condition.

Take a few minutes to read their stories. Then consider sharing your own story, tips, or both.

The following tips may not work for everyone. Please consult with your health care professional before trying the tips yourself.

Stories About the Long Road to Fibromyalgia Diagnosis


“I just continued on until one physician said,
‘I know what you have. Fibromyalgia.’ ”
Read Sharon's fibromyalgia story

Sharon's Story
Novi, MI

Thirty years ago, while I was on a run, I hit a stone, twisted my body, and fractured my hip. It took a good year and a half to heal, but the pain never went away. It actually started to spread all over into my hips, my back, my legs, and my shoulders.

Over the next ten years, I saw MDs, DOs, acupuncturists, chiropractors, surgeons, even a shaman. I knew in my heart that something was wrong, but I could never figure out what it was.

I just continued on until one physician said, “I know what you have. Fibromyalgia.”

I have been seeing the same physician every month for 19 years now. We work together as a team.

Today, I take care of myself physically first, and then look at the goals that I want to achieve in my life. It’s important to not just focus on the pain, but to focus on life and smile at all we have.

Sharon’s Tips

  • Stick to a schedule—it helps
  • Know when you’re pushing too much and listen to what your body is telling you
  • Keep a journal every day about what you do and how you feel


“No one could figure out what was wrong,
and I just got worse.”
Read Valerie's fibromyalgia story

Valerie's Story
Seattle, WA

In 1993, I stooped down to open a file cabinet and couldn’t get back up. I saw a doctor, who sent me to see an orthopedist, who sent me to physical therapy. No one could figure out what was wrong, and I just got worse.

A friend said, “You know, you might have fibromyalgia.” And I replied, “Oh, I know people with fibro and I’m not that bad.” Well, it turns out I was.

My doctor referred me to a rheumatologist, who did a tender point exam and diagnosed me with fibromyalgia. When I asked him how many tender points I had, he said, “Well, all 18.”

There’s a stigma about fibromyalgia. People are afraid it's all in their head. But it’s not.

Fibromyalgia impacts my life on a daily basis. But it isn’t my life. My life today is actually better than it was. It's a different life, but it's a better life.

Valerie’s Tips

  • Focus on the 4 Ps: pacing, problem solving, prioritizing, and planning
  • Find a good support group
  • Work on your communication skills, and don’t be afraid to ask for what you need

 

Stories About the Relief of Getting a Fibromyalgia Diagnosis


“It was such a relief to have a diagnosis.”
Read Beverley's fibromyalgia story

Beverley's Story
Harlingen, TX

I had been dealing with my symptoms for several years. I saw various doctors, but no one knew what my problem was.

I was finally referred to a rheumatologist, and later entered a clinical program trial. The doctor did a pressure test (tender point exam) on me and confirmed I had fibromyalgia. It was such a relief to have a diagnosis.

Now, I try to educate myself the best I can. It’s very important for the person with fibromyalgia and their loved ones to really understand this condition. It’s not in your mind. You’re not crazy.

Understand what you can tolerate and what you can’t. It’s also important to find peace and serenity within yourself, to accept fibromyalgia and not be ashamed of it.

Beverley’s Tips

  • Try to get a good night’s sleep
  • Exercise* and diet are very important
  • Acknowledge your limits—recognize what you can and cannot do

*Check with your health care provider first before beginning any exercise program.


“Today I was diagnosed with fibromyalgia.”
Read Debbie's fibromyalgia story

Debbie's Story
Gresham, OR

Today, I was diagnosed with fibromyalgia. It took over 5 years and many doctors to pinpoint exactly what it was.

The pain was unbelievable, but I just thought it would go away or that it was all in my head. It got to the point that I became depressed. I couldn't sleep or do the things I enjoyed, like hiking and walking.

I am so glad that I finally know what this is. Now, I feel I can move forward with my life. I hope this is a new beginning for me.

Debbie’s Tips

  • Know your limits
  • Eat well and sleep well


“I have not let my diagnosis be the end
of my life.”
Read Cathie's fibromyalgia story

Cathie's Story
Las Cruces, NM

At first, I thought I was coming down with the flu. I ached all over. I would wake up in the middle of the night from the pain. I didn't know what was wrong with me. I was so tired most days that I would be in bed by 6 PM, but I couldn't sleep. And I didn't even have the strength to open my eyes and watch TV.

As a single mom, I had 2 children to take care of. But there I would be in bed, and my kids would sit on the edge of the bed and just look at me.

I finally went to a rheumatologist and was diagnosed with fibromyalgia. It was a relief to find out what was causing my pain and fatigue.

Now, I read everything I can about fibromyalgia. I’ve changed my diet and exercise. I follow my doctor’s treatment plan. I have not let my diagnosis be the end of my life.

 

Stories About Learning to Cope With Fibromyalgia


“You just can’t do the things you used to do.”
Read Sylvia's fibromyalgia story

Sylvia's Story
Cocoa, FL

For me, it began when I had problems with my neck. My whole body just started aching. I probably saw 10 or 15 different doctors. Finally, I went to a rheumatologist and he said I had fibromyalgia.

It’s hard. Your life changes with fibromyalgia. It just takes over your whole body. I’ve always been an independent person as far as doing my own housework and yard work, and I can no longer do that. You just can’t do the things you used to do. But I’m just a very strong-willed person, and I’m the type to just get up and go regardless of the pain. I just keep moving. I try to exercise, swim, and such. And I know when to sit down and rest.

Everybody has a different way of dealing with the pain, with this illness. It’s comforting, talking to people that understand. It helps that they know what you’re going through.

Sylvia’s Tips

  • Exercise if you can*—swimming helps me because it’s easier on my joints
  • Don’t overdo it or your symptoms will really kick in
  • Know your limitations—if you’re tired, know when to rest

*Check with your health care provider first before beginning any exercise program.


“I’m not pain-free, but I’m much more comfortable than before.”
Read Frank's fibromyalgia story

Frank's Story
Radcliff, KY

After years of assuming my pain and discomfort were from arthritis, I was referred to a rheumatologist who diagnosed me with fibromyalgia.

I have found gentle exercise to be an outlet for coping with fibromyalgia.

Fibromyalgia is not well understood by most people. Only recently, my physician accepted the fact that I have this condition and began treating me for it. I have a whole array of medicines that I take daily, but exercise does me more good than anything.

I have a good deal of empathy with all those who are suffering from fibromyalgia and hope they can find some outlet like I did to overcome much of their pain and discomfort.

Frank’s Tips

  • Gentle exercise*
  • Wear a sweat suit when you exercise on the stationary bike; the heat may help to soothe your muscles

*Check with your health care provider first before beginning any exercise program.


“I try to keep my body moving and not
sit still too much.”
Read Olga's fibromyalgia story

Olga's Story
Bronx, NY

After my first 2 children, I was diagnosed with sciatica and bursitis in my hips. But my tiredness got worse after my third child. My legs, neck, shoulders, and joints began hurting more. I would tell my husband to rub my legs, but touching them hurt.

Finally, a rheumatologist diagnosed me with fibromyalgia. Now, I live with the pain every day. It's worse during my monthly cycle.

Even though I am tired all the time, I try to keep my body moving and not sit still too much.

Olga’s Tips

  • Stretching, swimming, walking, and a little yoga may help you deal with the pain*
  • Keep moving and enjoy life

*Check with your health care provider first before beginning any exercise program.


“Now, I manage my fibromyalgia with medication and exercise.”
Read Karla's fibromyalgia story

Karla's Story
West Wyoming, PA

When I was diagnosed with fibromyalgia, I was 38 years old. By that time, I was deeply depressed and in so much pain. I really thought I was losing my mind.

I had symptoms for about 10 years before I was diagnosed, and went through every test imaginable. Finally, a pain management specialist referred me to a doctor who specializes in fibromyalgia.

Now, I manage my fibromyalgia with medication, gentle exercise, and support from my friends.

Karla’s Tips

  • Sleep is very important. Try not to nap during the day so you can sleep better at night
  • It’s important to take your medication as prescribed
  • Balance your meals with a low-fat, high-protein diet. Drink plenty of water
  • Exercise! Keep those muscles and bones flexed and firm.* But do not overdo it!

*Check with your health care provider first before beginning any exercise program.

 

Stories About the Importance of Fibromyalgia Support


“It’s really important to support one another, because this is such a difficult illness.”
Read Tom's fibromyalgia story

Tom's Story
Appleton, WI

It was 1971, and I was playing Division One college basketball on a scholarship. My pain and fatigue started after a traumatic experience. My life literally changed in every way. It's hard for me to even put into words what that was like.

I can’t even guess how many doctors I saw. I was in flares more often than I wasn't. It was pretty devastating. Doctors thought I might have chronic fatigue syndrome or depression.

In 1996 I decided to see a rheumatologist. After giving me a pressure point exam, he said, "Tom, you have fibromyalgia."

Altogether, it took 25 years for me to get diagnosed.

I have learned to work hard at managing my fibromyalgia. My life is such now that I accept my diagnosis and am at peace with the situation. So it’s pretty nice, pretty wonderful.

I started a fibromyalgia support group where I live. It’s really important to support one another, because this is such a difficult illness.

Tom’s Tips

  • Join a support group—or even start one yourself
  • Stay informed—there's a lot of research and helpful information out there
  • Take care of yourself with diet and moderate exercise*

*Check with your health care provider first before beginning any exercise program.


“My doctor worked with me for a while before I got back to being myself.”
Read LaReeia's fibromyalgia story

LaReeia's Story
Muscle Shoals, AL

I really didn’t know what I had. I was just hurting and going to the doctor. My neurologist couldn’t figure out what was wrong with me. She eventually got me an appointment with a rheumatologist. After an exam of my pressure points, he told me that I had fibromyalgia.

Before my doctor first started treating me for fibromyalgia, I was so sick that I couldn't walk. My twin sister, LaFreeia, had to push me in a wheelchair. It was really rough for about 2 years. I slept day and night. My husband and my little boy had to take care of me. My family was there the whole time I was going through it.

After I was diagnosed, I read a lot of books—anything I could find about fibromyalgia at that time, I bought. Reading about fibromyalgia helped me understand the pain I was having because I really didn’t understand why I was in so much pain.

My doctor worked with me for a while before I got back to being myself. Now, I'm feeling so much better that I tell my doctor, "I love you" every time I see him!

I’m going on a cruise, and I’m really looking forward to it.

LaReeia’s Tips

  • Find a doctor who really sits down and listens to you and understands your pain
  • Use your friends and family as support
  • Learn about fibromyalgia by reading up on the subject
  • Engage in gentle exercise*

*Check with your health care provider first before beginning any exercise program.


“LaReeia, my twin sister, took me to the doctor who had diagnosed her fibromyalgia.”
Read LaFreeia's fibromyalgia story

LaFreeia's Story
Muscle Shoals, AL

Oftentimes, I would stay in bed 2 or 3 days because the pain was so severe.

LaReeia, my twin sister, took me to the doctor who had diagnosed her fibromyalgia. This doctor diagnosed me with fibromyalgia, right then and there, based on the pressure point exam.

Fibromyalgia has affected my life, but I am getting used to it. I am no longer able to do all of the duties that I did before around the house. I can do about half of them before my body will start to ache and give out. My husband cooks and does the dishes

I do the stretches that I'm supposed to do and walk.

My family still tries to take care of me. But they are happier with me getting up and doing things with them, like going outside and walking with the kids, or playing with them. I’m hoping that I will be able to take a trip.

LaFreeia’s Tips

  • Work with your doctor and try to find one that you are really comfortable with
  • Accept help when you need it
AdChoices