Jul 15, 2008
Let me start by saying that I have Fibromyalgia. I'm an active, well educated, hard working 30 year old female. I work 50+ hours a week and I workout at the gym a few times a week. My husband and I have a great life together. I have taken a very limited amount of medication over my 12 years of struggling in pain.
This is probably not what you pictured when you heard that I have Fibromyalgia. We are stereo typed into a group of whining women (and some men), who are pill seekers, who need to toughen up and deal with life. A few days ago there was an article on CNN.com about Fibro. There was a blog in which people were saying things like "get over it", "Fibro isn't real", "Get off your butts and do something and you'll feel better", "You just want drugs" etc etc. Reading these comments really lit a fire under me. I've also recently seen posts on this forum from people who are struggling with how to make their loved ones understand. So I decided to write this in my journal in hopes that I will help someone. Even if it's just one person!
I know it's hard to understand how people diagnosed with Fibromyalgia feel. We are in some kind of pain all the time and it seems a bit ridiculous. You're probably thinking, how can a person have soo many different issues going on at the same time, right? Some may still think that Fibro is a junk diagnosis because of the lack of understanding. It's easy to believe that Fibro isn't real since most tests that we endure come back normal. Before you jump to an uninformed conclusion, please keep in mind that MANY Fibro patients have other "real" disorders that are linked to Fibro. I personally have Endometriosis, Interstitial Cystitis, Migraine Headaches,Supraventricular tachycardia (fast heart rate and weird beats) and Irritable Bowel all of which are legitimately medically diagnosed. I've had a few surgeries due to the endometriosis and reoccurring cysts, I've had 18 weeks of catheterized treatments for my bladder disease, and multiple test and monitors on my heart. They all prove that what I feel is real. The pain is very real!
Fibromyalgia was the first diagnosis I received at the age of 18, it has been about 12 years now. Like I said earlier, I have since been diagnosed with Endometriosis, Interstitial Cystitis, and IBS by other doctors who were NOT aware that I had been diagnosed with Fibromyalgia. I was embarrassed to tell them that I had Fibro because 12 years ago the awareness was much lower and I had some doctors tell me that Fibro wasn't real. So I continued to see specialist after specialist for the other related medical problems and treated each of my problems separately.
Most recently, I had chest pains so severe that I visited my doctors office 3 times in 2 weeks. After enduring a few tests on my heart the doctor told me that I had Costochondritis. I had never heard of this before. When I began researching I learned that it is an inflammatory condition affecting the chest wall. Once I read the word inflammation I knew that my doctor's diagnosis was correct. This flare of inflammation was probably due to having Fibromyalgia. It only makes sense, how can I continue to have soo many unrelated issues? The current research shows that all of these conditions (and many others) are common in Fibro patients. So I've had to except that Fibro is real, although it's still not completely understood, it's a real chronic pain condition.
So I ask for you to imagine a world where you are in pain day after day. Sometimes there's no words to describe the feelings. We find ourselves trying to explain it and we can come up with 50 things that it may feel similar to, but at the end of the day nothing really describes it. So we are just trying to make it through the day, we still have work, kids, and a home to tend to. Then we may develop a new symptom, so off to the doctor we go. The doctor wants to run a few tests. We get our hopes up that it may be something that can be cured and we can return to normal. Once the results are in we may be told that everything is normal. So we're left emotionally hurt, we wanted soo bad for this test to bring an answer. Now we may sit in the car and cry outside the doctor's office, but we have to come home and get on with our lives. We carry all of this pain, anxiety, disappointment inside. All we want is for our loved ones to say they care, that they are sorry for our pain, that they wish they could help. We know that there's nothing you can do to magically heal us, but we long to feel accepted and supported. We need your validation and to hear you say you believe our pain. We need a shoulder to cry on sometimes, not because we are weak, but because we are worn out from the heavy load we endure day after day. If we fly off the handle about something small and insignificant, it's not really because you left your shoes in the floor, it's because at that moment we have hit our ropes end. I know that when I don't feel supported by my husband I carry around some hostility and when I blow my lid he's left thinking that I've over reacted to a situation. When the truth is I'm not reacting to that specific situation at all. I'm reacting to the fact that I'm miserable that day and I want him to care. There have been times when he's said that I'm crazy. I know he gets just as frustrated as me. I understand how hard it is for him to have to endure my ups and downs. He's really a great person and he loves me very much. But in spite of it all there is still a major disconnect when it comes to my medical conditions.
I could go on for days describing the many obstacles that Fibro has placed before me. I want to be clear in saying that yes we can hurt all over every single day. And yes, we may hurt in our arms today and your foot tonight. We may breakdown in moments that are overwhelming and we are NOT crazy! I will be glad to share details with anyone who needs help validating their situation to a loved one. Some times I think they just need to hear it from someone else.
I hope that someone can find comfort, strength and understanding from this. Good Luck to everyone in your journey!