Up until recently, fibromyalgia could easily be dismissed as a psychosomatic issue by some really sad doctors. The American Pain Society has labeled fibro a “lifelong central nervous system disorder.” But what does that mean?
Literally it means fiber muscular pain.
Symptoms include fun things like:
- Problems sleeping
- Problems with temperature regulation
- Sensory overload or sensitivities
- Headaches
- Brain fog
- Numbness and tingling
- Irritable Bowel Syndrome
- Allodynia (pain coming from a sensation that isn’t actually painful like T holding my hand)
- Anxiety & depression
- Muscle pain, weakness, and/or tightness
- Feeling like something is swelling even if it isn’t
- Irritable bladder
- Fatigue
- Muscle spasms
I could go on. There is really a lot that can fall under the symptoms category unfortunately.
Fibro sadly can affect everyone even children. Often fibro is a secondary condition to an autoimmune disease like RA. The vast majority of us are women, but the men that experience this pain are under-diagnosed and often don’t seek help. Also, fibro is a lot older than most people think.
As seems to always be the case with chronic pain diseases, we don’t know what causes fibromyalgia. Some can trace the onset to an illness, accident, or other stressful event (possibly PTSD related at times). Others can’t. The fact that it is now considered a CNS disorder will hopefully help us investigate further and find a cause.
Fibro is diagnosed through these tender points. Some doctors will make a diagnosis based more on the patient’s history than these tender points, but it all depends on their familiarity with the disease. That said, there are often tests to exclude other issues like problems with your thyroid or sleep apnea.
Sadly there are a lot of doctors who don’t believe fibro exists as I pointed out above. That means that people can live in pain for years before getting help. It’s important to bring this disease up directly if you feel as though you’re suffering from it. If your doctor reacts strongly in a way that suggests they don’t believe, get a second opinion.
Treatment isn’t awesome. Like RA and others, it often requires a multi-provider approach. Those on the care team can include your primary care doc, rheumatologist, physical therapist, mental health therapist, and pain management team to name a few.
Medications are often hit and miss.
- Lyrica can be really effective, but some react poorly
- NSAIDs
- Milnacipran/Savella, a Serotonin–norepinephrine reuptake inhibitor
- Gabapentin, which tends to make people sleep all the time
- Cymbalta
- Muscle relaxers like Flexeril
- Narcotics/opiates
Unfortunately, the last few on the list make you really tired. Even if you felt like doing things due to pain being reduced enough (which isn’t often the case), you’ll be mostly asleep.
Massage can be helpful, but not always due to the sensory issues the body has. They tell you to reduce stress, but it’s so hard to stay calm when you can’t even wear clothing because it hurts to badly. Changes in diet and exercise as well as therapy can help, but do not always unfortunately.
It’s hard to communicate how this all feels to someone, especially if you’re trying to be intimate or accomplish tasks around the house or having to stay home from work. Saying that it hurts to wear clothes sounds silly in our heads. Often we feel unsuccessful – if we can’t do the basics, what the hell can we do?
The good news is that there are plenty of successful people living with fibromyalgia. My favorite is and always will be the amazing Morgan Freeman.
His fibro was triggered by the car accident he had in 2008. The arm that was broken in the crash is the spot most affected by the disease. He doesn’t speak a ton about it, but he is a great advocate.
Others include:
- Sinead O’Connor
- Susan Flannery
- Jeaneane Garafalo
- Michael James Hastings
- Rosie Hamlin
- Florence Nightingale
- Frances Winifred Bremer
Those may not all be names we recognize, but they do good awareness-raising nonetheless.
The hardest thing for me is how it affects my interactions with the outside world. As I’m writing this I have a fan aimed at my fingers which are so angry from fibro pain. It’s almost like a burning tingle. I know that getting too warm caused it, so I’m trying to cool that most affected part of the body down. I may break an ice pack out shortly here.
I’m a really physical person. I love snuggling with T even if that just means touching feet while we’re on opposite ends of the couch. The pain this disease specifically causes is awful. It robs me of that physical closeness with my husband – or anyone else for that matter. My almost three-year-old niece isn’t going to understand if my hands hurt when she holds them. So I pick my battles. I will power through that pain for my loved ones. If it’s really bad, I’ll say something to T and we may hold hands or connect differently. I worry about what this means for when/if we have children.
I hope that this was a helpful article for those of you either dealing with fibro or wanting to learn more.