Q&A: Patient Advocate, Kim – Living with Fibromyalgia

We had the lovely opportunity to interview Kim, a wife and mother of two who has lived with fibromyalgia for the past 18 years. Kim was previously seeking a healthcare community where she could connect with others like yourself and came upon Peer Health where she has been able to enjoy the benefits of a like-minded community.

When were you first diagnosed?

I was first diagnosed with fibromyalgia 18 years ago. It was my family doctor who diagnosed me but I had gone to see her because I thought I had the flu or I thought I might have chronic fatigue syndrome.

Had you heard of the illness before?  

No. I was tested for lupus and rheumatoid arthritis and both of those came back negative.  

What were your symptoms?

During college, I began to have problems with my bladder and I suffered from insomnia. Looking back those might have been the early stages of fibromyalgia. After I had my first child, I developed plantar fasciitis. The foot pain was the first pain but at the time I did not know about fibromyalgia. When the total body pain developed I would wake up thinking I had the flu but I had no other flu symptoms. My pain was intense and everything ached. This pain would come and go. I was able to work and be a mother of two elementary-age children but the pain was always there. About 20 years ago the pain symptoms presented themselves and each year it progressively gets worse and the pain intensifies with back and neck pain.

What is a bad day like?

I wake up and all my joints and muscles ache.  It is difficult to get out of bed, it is a struggle to move and walk 20 steps to my bathroom. I usually have to take medication to get some relief but the pain never goes away. Every day I am in pain but occasionally I will have a day that I can move around better and even drive my car. Everyday tasks become difficult. Picking up a gallon of milk is nearly impossible. It might as well be a 50-pound barbell.

How do you cope?

I have a good friend in another state that has been diagnosed with fibromyalgia and we talk on the phone. Having someone who understands what I am feeling helps both of us. Talking to my family to get my mind off of the pain is a coping tool. I try to read but sometimes the pain prevents me from focusing on what I am reading.

What gives you the biggest relief?

I tried physical therapy and acupuncture but neither has helped. I had cervical spine surgery for the second time this past year. This procedure provided a little more relief to my neck than the first time I had the surgery about 4 years ago, but my back pain still persists. Also, my doctor prescribes several medications that I take every day.

Are there certain things that can trigger your pain?

Chronic insomnia makes my symptoms worse.  If I have not gotten rest I know I am going to be suffering in pain the next day. Traveling and stressful situations intensify the pain.

Where do you go for support?

I lean on my family and friends. They might not know exactly how I am feeling but they know that I am suffering. They remember what I was like before the fibromyalgia took control of my life.

What is the biggest thing that people don’t understand about those who suffer from fibromyalgia?

The disease controls your entire life. It controls everything you can and can’t do.  Sometimes I feel forgotten about because I can’t be active. My friends are sympathetic but after saying no to them so many times I feel like they stopped asking me to do things with them.

What role can PeerHealth have?

A community of people from around the world who suffer from fibromyalgia as I am posting my thoughts and questions will allow me the opportunity to hear from others. If I want to post questions or if I just want to read what others are saying will be helpful to me. If someone is not experiencing the symptoms of fibromyalgia they just don’t know how to relate to us even though they want to. Signing up to PeerHealth will be another great source for me to find new ways to deal with my fibromyalgia.

Peer Health can connect you with a personalized peer community to share provider recommendations, treatment options, and define your best life. The Peer Health community is coming soon and we want you to be the first to know. Sign up for our newsletter today.

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