I’ve been talking for a while about the fact that I have Fibromyalgia, but what does that mean exactly? I have discovered that when you enter this word into your search engine, a lot of things come up that don’t really amount to much. Let’s start with the basic definition.

fi·bro·my·al·gia

ˌfībrōmīˈalj(ē)ə/

noun

noun: fibromyalgia

1. a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.

Seems simple enough. Not that bad actually, although I am not really sure what musculoskeletal means exactly. But all in all, by this definition, it sounds manageable.

Now let’s see what WebMD has to say on the subject:

“Fibromyalgia is the most common musculoskeletal condition after osteoarthritis. Still, it is often misdiagnosed and misunderstood. Its characteristics include widespread muscle and joint pain and fatigue, as well as other symptoms. With fibromyalgia, the following symptoms commonly occur together:

• Anxiety or depression

• Decreased pain threshold or tender points

• Incapacitating fatigue

• Widespread pain”

There is that word again, musculoskeletal. Dictionary.com has told me that this means “concerning, involving, or made up of both the muscles and the bones“. Hummm… that seems a little worse.

The general consensus though leads me to believe that this is new territory and still warrants exploration and redefining as almost all of them describe Fibromyalgia differently. I have seen websites with long lists of symptoms, and others with short lists like the one above. And yet, most of the definitions that I have found on professional medical websites do not seem to be accurate or in line with how I feel or what I experience day to day.

For me, having Fibro boils down to five major symptoms: Nerve Pain, Muscle/Bone Stiffness, Fatigue, Cognitive Decline, and IBS/Colitis. Do I experience the anxioty and depression that is mentioned in most of the definitions listed? Of course I do. You would too if you had to face those five symptoms on a daily basis. They can get pretty hard to tolerate at times. Let me take them one at a time and elaborate so you can see what I mean.

Nerve Pain:

What does it feel like? It took four years of living with it before someone thought to ask me this question. It is a question that I wish more people would ask of Fibro Fighters. The answer is different for everyone. I once saw a poster that illustrated a thorny tree with no leaves and full of branches growing throughout your body and then setting the tree on fire. To some this may be accurate, to me, it’s not. The best way that I can describe it is that you are suddenly and acutely aware of where your nerves are. Think about that for a minute. Can you feel your nerve pathways underneath your skin right now?  If you said no, that’s good. You’re generally not supposed to. It should be one of those things that you don’t think about and take for granted. But for me, I feel them every day and more often than not, it seems like they are trying to push past my skin to get out of my body because they don’t like living there anymore. They are always active, they are always jumping, and this causes me a wide verity of pain levels from the dull flu-like ache to the “I overdid it at the gym” feeling to the intense sharpness that comes with a severe injury like a broken bone or surgery. It changes all the time and I never know how I am going to feel from one minute to the next.

Along with this nerve pain comes skin sensitivity issues. It makes sense right? If your nerves are trying to push their way past your skin then yes, the surface of the skin would get sensitive to the touch. There have been many times where I have had to ask people to please avoid touching me. People don’t seem to get this. Touching others is a form of support and comfort. A pat on the shoulder/arm/back/head or a hug can be an instinctive reaction for most, so when I ask not to be touched, they will think that if they just touch me gently it will be ok. It’s not. Even the most gentle whisper-like grazes can send a shock wave of nerve pain coursing through my system if I am having a bad flair up. The wave will then act like a signal to the other nerves in the body to be on high alert in case there is another attack and pain will not only increase in that spot that I was touched, but also throughout the rest of my body as well. So if I ask you not to touch me, I really really mean it. Don’t. Touch. Me.

Muscle/Bone Stiffness:

This one is actually the hardest for me to deal with. I call it “locking up”. There are times when the muscles in my body freeze to the point of turning to cement. I can’t stand, I can’t walk, I can’t reach, bend, or even flex. The ability to do any of those things becomes either non-existent or severely labored and difficult. In a sense, I become partially or even fully paralyzed. Think of a cross between the Tin Man from the Wizard of Oz and the Hunchback of Notre Dame. Often, I have needed help getting up from a chair or a bed, sometimes with the help of two people if it’s bad enough. This is beyond frustrating for me. To not be able to just get up and go the way that I used to, makes me very very crabby. I feel as if I am in my thirties but stuck in a hundred year old body.

This is the symptom that can make holding down a full time job nearly impossible. I know of Fibro Fighters that do work full time and I am baffled by them. I don’t know how they do it. Fighting against the stiffness and pushing my body to move as it should, just exhausts me. Which brings me to the next symptom…

Fatigue:

When you have Fibro, Insomnia becomes part of the package. You can go days, weeks, sometimes even months without rest. When you do sleep, you somehow manage to avoid REM sleep and therefore do not feel refreshed when you wake up. Sometimes this build up of not sleeping can lead to an ultimate crash. Other times, the body will adjust, but when you add it to the other symptoms of the illness, the body just can’t keep up.

I have discovered that the words “I’m tired” are a blanket statement that cover multiple levels of fatigue. I say these two words every day. (I hate that btw.) But every time I say them, I know that they mean something different from the last time that I said them. They can mean any of the following:

• “I wish I had more energy, but today is a good day”
• “I am feeling slightly run down but I’m ok to keep going”
• “I feel beat up and need to sit down for a while before I can keep going”
• “I need a nap but then I should be ok”
• “I feel like I need to sleep for longer than a nap and I may not be ok when I get up so I may need to sleep some more”
• “My very soul feels weak. I have nothing left. If I don’t stop, I am going to fall down.”

I feel all of these things. Sometimes all of them within one day. Too many times I don’t describe the level of tired that I am at, so it can get interpreted as “lazy” or “self-defeating” or “lack of exercise” by others. They also hear it come out of my mouth way too often so they also tune it out. Maybe if I did change my blanket statement to more detailed words, then people would understand, but honestly, I don’t have the energy to think about it. I’m just too tired.

Cognitive Decline (aka Brain Fog):

This one also makes me crabby. At times, I can actually feel myself becoming stupid. Before Fibro, I had my own business and juggled six to seven client projects on top of my regular business duties. Now, I get out of my car without remembering to turn the car off and take the keys with me. In the beginning I noticed it was becoming a problem when I would have a phone conversation with a client and hang up only to instantly black out about anything we had talked about. I couldn’t remember any of the specifics of the conversation. At first, I would take notes but eventually I had to stop accepting phone calls and switch to all written communication because I was missing information or getting details mixed up. Some clients accepted this new method, others did not and I lost business. Eventually, I closed up shop. Now, my appointment book is full of doctor’s appointments instead of meetings.

Sometimes the Brain Fog can make me laugh in spite of myself. I have done some pretty funny things in my fog like forgetting to put my coffee mug under the dispenser before turning it on (did you know that hot coffee can be a really good way to clean your counter tops?) or putting only one sock on before putting both shoes on. So yes, sometimes I find it funny, but mostly, it makes me sad. Being a “smartie” is a cornerstone of who I am, who I have always thought I was. I get things. I catch on quickly and can troubleshoot on the spot solutions. Or.. I used to at least. If the fog parts for a little bit, I still can. But mostly, I just don’t think as fast or feel as sharp as I used to and that makes me feel like a big part of me is missing.

IBS/Colitis:

Almost all Fibro Fighters will tell you that they have problems digesting food and medications. They will also all tell you that they react “funny” to most medications. Either they will develop an extreme intolerance, or the medication that worked for a while will stop working, or it will be like taking water. For that reason, many Fibro Fighters will bounce from med to med to med trying multiple combinations and high doses within a short period of time. This can wreak havoc on the digestive system and I strongly suspect this is why IBS, or as in my case, ulcerative colitis, can develop. This is just my own suspicion keep in mind. But to me it makes sense. We pop so many pills for pain and sleep, desperate to try anything, that we don’t realize that we can be doing more harm than good. It is a vicious cycle and one I wish the medical community would figure out. FAST!

As for what the “professional” reason as to why this happens – there isn’t one as far as I know. We just know that somehow, someway, Fibro is connected to the gut and it will cause problems.

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So, what is Fibromyalgia? It is life altering, annoying, painful, madness, frustrating, debilitating, and once you have it, you have it for the rest of your life. Sadly, many Fibro Fighters take their own lives because of that fact. This is in part due to the fact that the medical community doesn’t have a handle on it yet. I hate to say it, but I understand them and why they chose to stop fighting. This can be a very lonely illness and it can feel very hopeless at times. Most of the time, outsiders can’t see our symptoms and we look perfectly fine so when we try to explain that we aren’t, they don’t get it. I think that is one of the main reasons why I started this website, to help bring about awareness that we aren’t fine and that we need a solution. I just believe that it shouldn’t have to be this way.

I choose to fight. I choose to hold on to hope. I choose to live. Even if that means living with Fibro – whatever it is.