How did your fibromyalgia journey begin?

I was diagnosed about 16 years ago

When were you diagnosed, and what was your journey to getting a diagnosis like?

I was exhausted all the time, I hurt when anything touched me, even my clothes. I couldn’t walk, stand up or just sit or lay down without horrible nerve pain.

What did it feel like to finally have a name for what you had been experiencing?

I was diagnosed when there wasn’t as much information out there about Fibromyalgia so I really felt like it was just an umbrella that I was put under. It was so hard to feel like there was any help out there because it wasn’t being really taken seriously.

Do you have any idea what may have contributed to or triggered the onset of your fibromyalgia?

I have read many reasons why I have developed it. But not sure why.

Do you experience fibromyalgia alongside any other health conditions? If so, how do these experiences affect one another?

I also have an autoimmune condition, arthritis, migraines and tinnitus. It all can be so overwhelming and some days I would give anything to have it be gone for just one day. Depression is one of many things I struggle with all the time.

How does fibromyalgia show up in your body and daily life? What symptoms do you experience?

It doesn’t matter how much you sleep you are chronically exhausted. My body and mind are constantly at war. I want to be productive and creative and happy but my body is in so much pain all the time and trying to make it thru the day I have no energy or will to do anything extra. I struggle to keep my house kind of picked up. I thank God for my husband who picks up the slack and takes care of the house. Way more than I am able to. Although that causes fear in me because I worry he will get tired of having to do it all and feel it would be better to leave. I have had to go to working 2 days a week because that is all I can do but then I am still able to be able to contribute money wise to the home.

How would you describe the pain and physical sensations you experience with fibromyalgia?

The pain is constant. It never goes completely away. I go to bed and wake up with a severe headache. This does not include the migraines I also have. My body hurts all the time. Nerve ending pain, headaches, pain when standing, sitting, laying down, sleeping and resting. It has sucked all the enjoyment out of my life. I have to cancel outings because going will be too much and cause a flare.

How would you describe the fatigue you experience with fibromyalgia, and what impact does it have on your life?

It doesn’t matter how much you sleep you are constantly exhausted. And if you think you are going to have a good night sleep, think again. I have a hard time falling to sleep and staying asleep. So frustrating.

Do you experience brain fog or difficulties with memory, concentration, or finding words? If so, what is that like?

Fibro fog is real. I have a hard time at work not remembering what needs to be done, where to go on the computer to do it, even if I had just done the task a few minutes before. It has caused problems at my job. I can be talking and in mid sentence I can’t find the words I am needing to say. I forget a lot of stuff and have to write lists and reminders all the time.

Do you experience any sensitivities, such as to temperature, touch, light, noise, smell, or other things? If so, what is that like for you?

The heat and cold cause me so much pain. Especially the cold. Light and noise can cause issues also

How has fibromyalgia affected your sleep and ability to rest?

I am always tired but at the same time I can’t sleep.

What is a fibromyalgia flare like for you, and how is it different from your usual experience?

A flare is horrible. My body feels like it is raging a war against itself. It is hard to move, walk, sit, stand, lay down. I feel like I have nerve endings that are raw and open to the touch of anything.

Do you have “good days,” and if so, what do they look like?

I do have good days and sadly that is when I feel good enough to shower and actually put on makeup. Then maybe doing a few things around the house. But they are very few and far between.

Have you noticed anything that seems to trigger or worsen your fibromyalgia symptoms?

The cold and heat. Stress or pushing myself to far and not resting enough.

How has fibromyalgia affected your daily life, including your education, work, routines, plans, or the activities you are able to do?

I have had to go to part time and in the process of trying to get disability. I put things off all the time. I have to cancel plans all the time and I am always the first one to leave and go home. Makes me sad.

Has fibromyalgia had an impact on your finances or access to care?

Since I have had to go to part time I am not making as much money. I am trying for disability and am praying it is granted. And of course that causes me to be depressed and anxious about bills.

What has your experience been like with doctors, specialists, and the healthcare system?

At first when I was diagnosed there wasn’t a lot they said or did. Just that I had it. Thankfully there has been way more research so I feel there are more options as far as medicine to help. Although I have not found one that has fixed it. Doctors seem to be more open to the fact that it is a real issue and not just in my head.

What has your experience been with treatments, medications, therapies, lifestyle changes, or other approaches to managing fibromyalgia?

Going part time has helped some. Would be better if I didn’t have to worry about working. I take medication each day, I don’t volunteer in groups because I usually have to cancel. I hate that. Stay home a lot and only attend the most important things with my family.

What has it been like to live with a condition that others can’t see or may not fully understand?

It is so hard. There aren’t any cast, stitches, bruises so people don’t see how much you hurt. They don’t understand that it feels like my elbow bone is sticking out because they hurt so bad. And just a soft rub on your shoulder or a hug is painful.

Have there been times when you felt dismissed, misunderstood, or not believed about what you were going through?

At first my family and friends , I think, just thought I was being dramatic and just wanted to get out of doing things. But thankfully that they now understand.

How has fibromyalgia affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?

I have gotten used to people not always understanding. Especially first on but now there is so much more information and understanding about it now.

Has fibromyalgia had an impact on intimacy or your sexual life?

Yes, I have no sex drive. Which causes me to feel bad and be depressed about it.

What has the emotional or mental side of living with fibromyalgia been like for you?

Depression is a big side effect of fibro. Somedays are easier than others. I am always feeling like I am letting everyone down.

How has fibromyalgia affected your relationship with your body, identity, or sense of self over time?

My self worth is really low. Not being able to contribute to the house as much both by upkeep and money. Weight gain is a big issue because of the medications that I take. Also since I hurt I am not able to exercise. This all makes me feel like a waste of space.

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

I get massages. Try to spend time with friends who lift me up. And also time with family who love me no matter what.

Have you connected with others who have fibromyalgia, either online or in person? What has that experience been like?

I know a few people that have fibro and we visit about all our issues. I also belong to a few Facebook groups.

How do you feel fibromyalgia is understood by the medical community, society, and the media? What do you think needs to change?

It does seem to be talked about more and more research is being done. Which is awesome. Doctors also seem to be more understanding and are being more helpful.

What would you like more people to understand about fibromyalgia?

This isn’t something anyone would choose and the pain is real and there whether you can see it or not. Give us grace and be kind.

How has your relationship with fibromyalgia changed over time?

At first I was passed because I was given this diagnosis but not much help with dealing with it. I actually wouldn’t even tell people I had it because people would just roll their eyes about it. But now it is understood more and people are more understanding.

Despite the challenges, have there been any unexpected changes, insights, or personal growth that have come from living with fibromyalgia?

Learning to listen to my body and I have learned to stand up for myself

When you think about the future, what fears, concerns, or hopes do you have?

I fear that I am going to struggle with it the rest of my life and there isn’t ever going to be something that will fix it. I worry I will not be able to do anything and be stuck at home all the time.

Is there anything else you’d like to share?

I pray for everyone with this awful condition get help and we can all feel better, healthier and able to do what we want to without having a flare up because we pushed ourselves too far on one day and are down for many days afterwards.