What to Expect After a Fibromyalgia Diagnosis
What's Your Plan?
Have you seen Star Trek 2: The Wrath of Khan (1982)? Anyone who saw it will recall the ear worm scene. The bad guys put fat, ugly larvae that looked like leeches on prisoners, and the worms went into their bodies through their ear canals. Khan tells us they wrap around the brain and grow, driving the host to madness. It kinda sounds like fibromyalgia!
Fibromyalgia is not an earworm, obviously, but it causes pain that stems from misfires in the central nervous system. Some days, on flare days, it does drive me insane.
Mourning Your Former Self
If you’ve received a fibromyalgia diagnosis, you will probably mourn who you used to be. I did. My husband did. Even my grown children did. Life will never be the same–but that does not mean your life is over, useless, or less worthy of joy, peace, and love. I hate the term, but with time, you’ll settle into a “new normal” that feels uncomfortable and frustrating.
My way of keeping sanity is with my faith. I’m a Christian, and I believe that God has good plans for me, for a positive future. I also believe Jesus is with me, through every flare and every good day, too. I talk to him often, and he always soothes my soul.
Jesus himself said on this earth, we will face trials. Fibromyalgia, or FMS (fibromyalgia syndrome), is a trial.
Be Your Own Advocate
Talking to fibromyalgia patients online, I’ve noticed overlaps in symptoms, as well as unusual one-off symptoms. For instance, I awoke one night with the tip of my tongue spasming. What the heck? It was the strangest sensation. Sometimes my skin feels like it’s burned, until I touch it and realize that sunburn feeling is coming from under the skin.
No one knows your body as well as you do. No one knows your symptoms like you do. Please try to put your symptoms into words, in a list, to review with your doctor. Frequency of similar symptoms (headache and migraine, for instance) should also be noted. Innocuous one-offs shouldn’t be treated but repetitive symptoms may respond well to treatments.
It's up to YOU to manage your body’s symptoms, your mind’s understanding of FMS, and your spirit’s health, as well. Take control of your life, to the best of your ability. To avoid sinking into depression or driving yourself crazy with worry, you must find strength within yourself–or even better, with God.
On this website, I hope you’ll gain knowledge and wisdom, so that you can fight fibro on your own terms.
Fibromyalgia Flares
The word flares brings to mind images of houses burning down, flames shooting from the windows. Similarly, a fibro flare can burn down the most positive mindsets. Pain, fatigue, twitches, migraine, poor balance, even blurry vision can occur during a flare. Mine last for one or two days, and I have flares 3-6 times a month.
I’ve found that for me, reading, watching TV, and napping are the best treatment for a fibro flare. I use a ton of nifty meds, tools, and lotions, as well as a TENS unit and heating pad to reduce pain. I stretch multiple times during a flare day, too. I try to do the dishes or sweep to test my endurance. When I’m out of breath just walking across the house, I know it’s time to lie down.
WARNING! Fibromyalgia symptoms can worsen and even initiate a flare if you overexert yourself.
The docs say exercise helps. I believe that. But you have to test your limits to learn where they are. Then live inside them, either participating in life or resting so that you can be better in a few days.
Depression & Anxiety
Everyone has stress, but not everyone experiences clinical depression and anxiety. Fibromyalgia patients are subject to one or both. Let me define both terms for you.
Clinical Depression: Clinical depression, also known as major depressive disorder, is a common mental health condition characterized by persistent feelings of sadness, loss of interest, and other symptoms that significantly interfere with daily life.
Clinical Anxiety: Clinical anxiety, also known as an anxiety disorder, is a mental health condition characterized by excessive and persistent worry, fear, and nervousness that significantly interferes with daily life.
Many FMS and IBS patients take an SSRI to help regulate the brain. Personally, I take paxil, or paroxetine. Because there are more nerves in the belly than in the brain, SSRIs can help mitigate symptoms of both fibromyalgia and IBS.
Common Fibromyalgia Symptoms
When someone asks about the kind of pain FMS causes, I like to show them a diagram of all the nerves in the body and say, “It hurts here.” Now, let’s review the most common symptoms of FMS. These should look familiar…
- PAIN: aches, stiffness, burning, gnawing, throbbing in muscles, tendons, bones, and even teeth.
- FATIGUE: extreme tiredness and the inability to bounce back to normal after physical work
- SLEEP ISSUES: falling asleep and staying asleep are both a problem
- SENSITIVITY to PHYSICAL STIMULI: lights may seem too bright; sounds may be too loud; too much going on may overwhelm you
- COGNITIVE ISSUES: brain fog causes disruptions in vision, thought processing, memory, and concentration
- GUT ISSUES: diarrhea, constipation, acid reflux, GERD, stomach cramps or pain, bloating, gas
Additional common Fibromyalgia symptoms include:
- Headaches
- Migraines
- Restless legs
- Painful bladder
- Stress incontinence
- Painful periods
- Anxiety
- Depression
- Lethargy
- Insomnia
Common Fibromyalgia Comorbidities
"Comorbidity" is an ugly-sounding word. It simply means having two diseases or conditions at one time. Those with fibromyalgia may also experience one or more of these:
- Irritable bowel syndrome (IBS)
- Chronic fatigue syndrome (CFS)
- Migraines/chronic headaches
- Depression, anxiety, panic disorder, mood disorders
- Temporomandibular joint dysfunction (TMJ or TMD)
- Interstitial cystitis
- Sleep disorders
- Myofascial pain syndrome (MPS)
- Postural tachycardia syndrome (POTS)
