My Fibro Story

Since Fibromyalgia doesn't have a known cause, it's hard to say where my Fibro story started. However, there was a time I definitely knew something was wrong...

When I was 22, very close to celebrating 23, and away at college I woke up one day and realized I felt like I had never slept at all. I was exhausted. I dragged all through my classes and activities that day until I finally was able to sleep and get rest. Except I woke up the next day again feeling like I hadn't gotten any sleep.

Soon I was falling asleep in class, feeling awful, and struggling to focus on homework and assignments, even to comprehend what I was reading in my textbooks. [That fatigue and fogginess in thinking and concentrating has continued. Some times are worse than others]

After a week of this I knew something was wrong. No amount of sleep changed how I felt. I finally went to the doctors and they took a number of tests. At the end they told me I was perfectly healthy and nothing was wrong. Have you ever wanted to throw a total tantrum but as an adult? So wanted to here! I still felt awful so I knew something was wrong!

There is nothing worse than waking up one day feeling awful and, as time goes on, realizing that your body has betrayed you. If you have never experienced this for some kind of debilitating condition, illness, or disease it is difficult to convey the horror, confusion, and grief this makes you feel.

A few years went by while I met my husband and got married (one of the best decisions of my life!), I started my masters in counseling (also one of the best!), and still- no matter how much sleep I got I felt exhausted. Eventually, after reading online, I figured that I had chronic fatigue. I had a lot of the same symptoms. I still went for tests every so often as things seemed to get worse. The tests still came back saying I was perfectly healthy.

At this point my husband tentatively suggested that perhaps since the tests said nothing was wrong then maybe nothing was wrong? I responded with exploding, responding that I felt awful and it was in no way normal to feel this way. He learned to keep those kind of thoughts to himself. :) I learned to not respond badly when someone asks a logical question, even if it's upsetting.

I worked at an independent bookstore for several years around this time.

 
I learned that one of my co-workers had Fibromyalgia. She would occasionally call out sick the morning of work, need help lifting the boxes, and other little things like that. I remember thinking a little ungraciously the third time in a row I was working and she called out sick, then finding out later that she had been gardening (one of her favorite hobbies) or something a little more physically strenuous.

If I could talk to her now I would tell her, "I soooo get it now! I am so sorry I ever thought anything ungraciously and wish I could have thought to make it easier for you." Because it is hard. It is hard to get out of bed, and hard to resist doing something you love, even knowing you might pay for it later in pain and stiffness.

A couple years later (and a lot of difficult nights and foggy days) we decided we wanted to have kids and I gave birth to our son.

[Actual picture of our newborn son- Reilly Christopher]

Now, my son is wonderful! But the process of birth and recovering afterwards was awful. I was completely wiped out physically from the pain. I was drained mentally and emotionally from fatigue. I developed Post Partum Depression, which kept me in a constant state of stress and emotional distress. Reilly's whole first year is probably the worse year of my life so far because of all this. Reilly himself is the best part of that year!

If you've read my post about what Fibro is, you will have noted that one of the risk factors is physical trauma. I believe that the pain of giving birth ramped everything up. I started having pains in my hands and feet. My arms and legs would tingle periodically in a way that itched and drove me crazy. I had a hard time even walking because it was painful. My hips began giving me trouble. It felt like I was developing Rheumatoid Arthritis in all the major joints and all those in my hands and feet.

 As this year went on, I began feeling trapped in my body and wanted desperately to either have my body work properly and let me feel right, or to not be in my body anymore. Please understand, it isn't that I wanted to die. I was not suicidal. I just didn't want to be in my body anymore because I was so tired (having a newborn didn't help with that!) and so tired of hurting and not knowing why.

After a couple months I was able to go to an RA doctor, and received the orders for another series of tests. However, this time I got a diagnosis back- Fibromyalgia. Finally, after 7 years, I had gotten a doctor that both had the knowledge and took the time to really listen and figure out what was wrong!

It was both relieving and depressing. Relieving because I finally had a definite diagnoses in which everything I was going through made sense! Depressing because I already knew that Fibro was a lifelong condition and there was no cure for how I was feeling- I hadn't wanted that reality.

It took a while to completely come to terms with having Fibromyalgia and how different my life would be with it. More of that in this post.

What Is Fibromyalgia?

Fibromyalgia (Fibro) is a chronic syndrome, with no definite cause, in which the sufferer experiences heightened pain and stiffness, fatigue, and depression, among other symptoms.

Lets break this down...

Fibromyalgia is a chronic...
Fibro is a condition that doesn't go away. It can get better at times, it can get worse, but once a person develops Fibromyalgia they have it for the rest of their life.

...syndrome...
Fibro is called a syndrome because over the years doctors have noticed certain symptoms grouped together in patients they have seen. Over time this grouping of symptoms became labeled as Fibromyalgia. It is not a disease, an illness, or directly caused by a virus.

...with no definite cause...
There is still no definitive cause for Fibromyalgia. There are things that are the same for some, but no underlying reason is the same for everyone. Here's what they know about the cause in a condensed form:

1. Fibro often runs in families, so genetics could predispose a person to get Fibromyalgia.

2. Epstein Barr virus, hepatitis C and other systemic infections have been linked with Fibro. Chronic infections of certain viruses can trigger Fibromyalgia.
3.  There is some evidence that links Fibro with previous physical and emotional trauma, similar to PTSD. This can include a bad car accident, childbirth, or menopause (a dear woman I love told me her symptoms have been greatly exacerbated by menopause).
4. Fibro has been linked to diseases and illnesses such as Lyme disease, ankylosing spondylitis (an inflammitory disease that causes vertebrae in your spine to fuse together), rheumatoid arthritis, and lupus (an inflammatory disease caused when the immune system attacks its own tissues), all of which indicates there is an autoimmune element to Fibromyalgia.
5. Some believe that a pattern of sleep dysfunction is the root cause for Fibro.
6. Studies have shown that those with Fibro have lower Serotonin (Serotonin helps lower and regulate pain) and 2-3 times higher levels of substance P (increases nerve sensitivity and heightens perception of pain.)

My opinion is that 1-4 are risk factors. The more of them you have the more likely you are to get Fibro at some point, with 5 & 6 having potential as both cause and symptom, perhaps cycling to make Fibro worse as time goes on if nothing mitigates these conditions.

...in which the sufferer experiences heightened pain and stiffness...
After reading the previous paragraph in #6, it isn't a wonder that pain is experienced. Additionally, to get an official diagnoses of Fibro, pain must be present in at least 11 of 18 pain points on the body, and in each quadrant of the body. The pain feels similar at times to Rheumatoid Arthritis, but instead of occurring in the joints, the Fibro pain occurs in the muscles, tendons, and connective tissues. Stiffness in these areas also occurs after remaining in one position for a time, causing additional pain.

...fatigue...
Regardless of whether it is cause or effect or both, sleep patterns play a big part in how people experience Fibromyalgia. Fatigue experienced ranges between mild and overwhelming. Fatigue often contributes to depression and worsens pain symptoms. People with fibromyalgia often have below-normal levels of certain brain chemicals that are essential for proper sleep patterns and a sense of mental well-being: Serotonin, Norepinephrine, and Dopamine.

...and depression...
Depression often occurs in those with Fibro as a result of lowered Serotonin levels in conjunction with interrupted sleep patterns and increased fatigue. Low cortisol levels, poor mitochondrial function, low levels of vitamin D, and hypothyroidism can also contribute to anxiety and depression.

...among other symptoms.
Other symptoms include tension headaches/migraines, Irritable Bowel Syndrome (IBS), TMJ pain, dry irritated eyes, ringing in ears, pelvic pain, skin problems/sensitivities, burning, tingling or numbness in hands and feet, and cognitive difficulties (memory problems, confusion, and difficulty concentrating).

And all of this means that Fibromyalgia is complex, confusing, and difficult to deal with!

Do you feel a little down just reading this? It's not an easy condition to live with, and difficult to not feel slightly depressed when thinking about it! Not everyone has every symptom. However, the fatigue and the pain points are the definitive symptoms of Fibro. You have to have those to receive a diagnoses. I haven't had every symptom of Fibro, but in writing all of these symptoms out I realized that I now do, and some have become pretty bad!

I will share more details about each of these sections, as well as some of the ways I've found to manage it and think about it more positively, in later posts.

Do you know someone with Fibromyalgia, or have you been diagnosed yourself? I'd love to hear more about it!

Disclaimer: Not a doctor!