Fibromyalgia is one of the most misunderstood conditions out there. While more people have heard of it today compared to twenty years ago, it is still misunderstood by peers, family, and even medical professionals. In this fibromyalgia story, we hear about this misunderstood condition’s effects on Diana Neill.
Let’s hear what Diana has to say!
Fibromyalgia stories are reader-submitted. The Disabled Diva Blog provides this space as an outlet to share their experience, give another point of view, and connect with other patients. See the link at the bottom of this interview to find out how you can share your fibromyalgia story.
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Who is Diana Neill?
Diana is 42 years old and lives in Eastern Oregon with her husband and two youngest kids. Her two oldest kids are in Alaska and are grown. She enjoys anything that gets her creative juices flowing–sewing and crafts, blogging, making video tutorials, etc. She wants to help spread awareness about fibromyalgia since it is such a misunderstood disease. She was diagnosed at age 40.
In addition to fibromyalgia, Diana also has chronic tendonitis, osteoarthritis, chronic migraines, Reynaud’s, Eczema, ADD, and anxiety disorder.
The rest of the interview is in her words.
When did you first hear of fibromyalgia?
I heard little about it 20 years ago. All I knew was it was a monster of a disease that causes severe pain.
How long did it take from the point of first discussing symptoms with a doctor to receiving a formal diagnosis?
It took two years, only because I was so adamant about finding out what was wrong. I had a list I had printed out with all my symptoms. I figured I had lupus since I had so many of the same symptoms.
I showed my PCP, she guessed I might have Sjogren’s, which is similar to lupus, ordered a bunch of lab work, then sent me to a rheumatologist, which took months to see. He wrote in his online notes that he was “concerned” it may be fibromyalgia. He never discussed the diagnosis with me.
I was so outraged, I asked my PCP for a different referral. Again, it took months to see a new doctor. She went over everything with me and officially diagnosed me with fibromyalgia and osteoarthritis.
Were you surprised by the diagnosis?
The first time, I was shocked and in denial. I didn’t want to believe I had fibromyalgia. That’s another reason I wanted to see a different doctor. But by the time I saw the second doctor, I had researched fibromyalgia and was amazed to see so many similarities with fibromyalgia symptoms and mine. I joined a fibromyalgia online support group and could relate to every post.
How Fibromyalgia Changed Her Life
What kind of changes did it make regarding your home/personal life
The diagnosis itself has been both a blessing and a curse. A blessing because now I know what’s wrong with me. I know why I feel the way I do and why I have the symptoms I do. It’s no longer a question of whether or not it’s just in my head, or maybe I’m just really out of shape.
I’ve been able to connect with other ladies who also have fibromyalgia, and we lean on each other for support because we know what each other is going through.
A curse because nobody understands fibromyalgia unless they have it. It’s such a misunderstood disease that many people don’t know anything about it; like I once thought, all it was was severe pain. Or they believe it’s a made-up disease–a disease for hypochondriacs, a disease for complainers, a disease for the lazy.
People who think this couldn’t be more wrong. Most people with fibromyalgia are go-getters and hard-workers. They can’t stand to sit still and do nothing, which makes this disease so difficult. It forces us to be still. It forces us to slow down. The worst thing about having fibromyalgia is not being able to do the things I want to do!
There’s a lot of misunderstanding about fibromyalgia that makes relationships difficult. I have been told to “stop using an illness to not take care of your kids.” That was the most hurtful thing anyone could say to me.
Oftentimes my husband asks me why something hurts, why I’m so tired, or why I don’t want to go somewhere, and I have to remind him about fibromyalgia. Sometimes I think he forgets I have it.
Overall, he has been very supportive and helps me out a lot. I’m one of the lucky ones. Many women in the support groups say how cruel and abusive their husbands are.
Has fibromyalgia impacted your work life?
Yes. I had to quit my job because I could no longer physically complete my tasks. My job required me to do a lot of lifting and walking. My wrists would get so weak that I could barely lift a can of soup. My back would ache so bad; there were times I’d come home and barely make it to the bathroom to wash my face to get ready for bed.
My whole body shook. I was in tears. My ankles often hurt to the point that I was limping and thought I had a sprain. My balance was starting to get off, so I could not climb ladders. I would come home after working just a few hours and be completely wiped out to the point that I couldn’t fix dinner. My kids would complain that I wasn’t taking care of them. That’s when I decided I had to quit.
The Hardest Parts of Living with a Misunderstood Chronic Condition
I would say the hardest part about fibromyalgia is the unpredictability. There are days when I can ride a bike and feel like I don’t have fibromyalgia at all. I can clean the house, run, and feel normal, and then I start to wonder if nothing was ever wrong with me to begin with. Then all of a sudden, I’ll wake up and feel like I was hit by a truck, achy all over, can barely move, my legs feel like they are in concrete, and I feel like I haven’t slept for days.
Sadly, days like this are more common than the good days. There are, of course, other symptoms that never really go away, like intense itching, insomnia, and extreme sensitivity to pretty much anything. I get headaches and migraines more often than I don’t.
Caring for Fibromyalgia and Health
I like to be as natural as possible but have tried prescription drugs in desperation. Sadly, they did not help and actually caused more symptoms. I even tried CBD oil, only to land in the ER because I had a severe reaction to it.
Taking supplements has helped tremendously, and staying away from stressful situations, not going out as much, relaxing when I need to, etc. For my headaches, usually, Theraflu is the only thing that helps, but sometimes even that doesn’t help. A heated massager around the neck sometimes helps, along with muscle relaxers, ibuprofen, Tylenol, etc.
But it’s hit and miss. Sometimes something will work; other times, it does not. I drink lots of chamomile tea throughout the day. I do light stretches when I’m feeling up to it. I listen to calming music whenever I can. It’s more about prevention than treatment.
It is extremely difficult to find a good doctor who is an expert on fibromyalgia. Most doctors dismiss it and say, “Just get plenty of sleep and be on your way.” Like that’s all I need is to get more sleep, and magically, I’ll be better. Or “start walking 10 minutes a day,” as though I do nothing but sit around all day.
Since I have osteoarthritis and chronic tendinitis, I believe that fibromyalgia amplifies those conditions and makes them hurt worse than if I didn’t have it. The scariest thing about fibromyalgia is it mimics so many other health conditions that, many times they are missed because the doctor assumes it is “just fibromyalgia.”
Mobility and Accessibility
I have purchased a shower chair which allows me to shave my legs in the shower without falling or hurting my legs. I recently purchased a trekking stick for balance. There are days when my legs are so weak and shaky that I can barely walk, and my balance is horrible. I have to hang onto everything as I walk, so I decided I’d better get a stick to hang onto. It’s better to be safe than sorry, and I’d rather be embarrassed for having a stick at my young age than to fall and break something and be stuck in bed until I heal.
I’ve purchased a lot of things to make it easier to do things. I bought a drill with brushes on it so that I can scrub things. I bought electric scissors, so it’s easier to cut things. And I bought an instant pot to make meals easier.
Advice for Newly Diagnosed
Do your research! There’s a world of knowledge at your fingertips when you search online. Research supplements that help with fibromyalgia or certain symptoms. Try some and find what works. Research yoga and light stretching exercises and try them out to see what works for you.
Join an online support group. I’ve learned so much and have leaned on my friends in these groups. There are days when I just feel like giving up, and then I start talking to people in these groups, and they give me the strength to keep going.
Keep a journal of your symptoms so you can look back and see if there is any correlation between what you’re eating or doing that makes your symptoms worse or better.
What part of Diana’s Fibromyalgia story resonates with you?
Personally, trying to find a doctor who is educated about fibromyalgia aspects hit home with me. I mean, really educated. I have had doctors claim to know about this misunderstood chronic condition but then, instead of testing for other culprits right away, blame fibromyalgia when new unrelated symptoms presented themselves.
Do fibromyalgia and its misunderstandings make your life difficult?