The Monster Inside Me...

May 11, 2011

In support of Fibromyalgia Awareness Day I'm going to do something that I've done before on my blog. I'm going to tell the story of when I was diagnosed and what I go through.

Let me begin by saying that post isn't meant to gain your sympathy and I'm not asking you to feel sorry for me. I don't want you to. We all have struggles in life that we have to learn to deal with. This is mine.

Fibromyalgia (FMS) isn't something that I've liked to talk a lot about on my blog because I don't want it to define who I am. I always (try to) say "I have FMS, it doesn't have me!"  I don't want to spend the rest of my life feeling sorry for myself for having this. I want to live as much as I can on the good days and rest as much as I can on the "fibro" days.

When I first started noticing symptoms almost 9 years ago I was in an abusive marriage. It only got physical once, right at the end of our marriage. But the verbal, and emotional abuse happened every single day. My ex was an alcoholic and a Rx drug addict.

I started noticing that I seemed to be in constant pain. That my muscles always seemed tense, and that my muscles always hurt. When my hands started going numb and I started dropping even the smallest of things I knew something was wrong and that I needed to go to the doctor.

Thank God I had a doctor who knew about Fibromyalgia. There are a lot of doctors out there who don't even believe in it. Doctors who think "it's all in our head!" When I told my doctor what was going on with me the first thing he said is "I'm almost positive you have Fibromyalgia!" I'd never even heard of it.

He said he wanted to run some test on me, and that he'd have to do an exam to be sure. I didn't panic until he said that he was going to be testing me for MS and Lupus.

All that I could think about was "What if I have MS?" "If I end up in a wheel chair I'm going to have to depend on him (the ex) to take care of me?" Then I started going through the whole "if he's this abusive now, can you imagine how bad it will be when you're totally dependent on him?"

I did the worst thing that I could have possibly done. I went home and I Googled MS, Lupus, and Fibromyalgia. That just sent me into full on panic mode. And full on self preservation mode. I decided that I had to take care of myself because I couldn't depend on anyone else to take care of me.

I started turning everyone away, pushing everyone away. I didn't want anyone to feel like I was a burden on them.

In the month that it took for all of the testing and the results I went into a severe depression and I didn't even realize it. No one did. I got so lost in the "what ifs" that I forgot how to live.

I begged my ex to come to my appointment with me to get the results from all the test. I don't know why I did. It was just one more opportunity for him to hurt me. I ended up going alone. I was scared to death of what I was going to find out.

When the doctor gave me all the test results and the results of the MRI I was in a daze. It wasn't as bad as he thought, but it was worse than I thought I was going to get, considering I was getting the "good news" out of all the things it could have been.

I was told "You have Fibromyalgia,  dehydration of the disc, degenerative disc disease, Neuroforaminal Narrowing, Chronic Fatigue Syndrome, and Arnold–Chiari malformation. I didn't know what any of these things were besides Fibromyalgia but none of it sounded like good news to me.

I cried all the way home. Even though my ex treated me like he hated me, for some dumb reason I thought I could go home and turn to him, that I could lean on him and cry on his shoulder. When I told him what the doctor said he looked at me and said "You might as well go kill yourself now!"

For the first two years after my diagnosis I was in more pain that I could ever describe to you. Most weeks I spent four out of seven days laying in bed, in so much pain that I could hardly walk. Sometimes, I couldn't even wear clothes, they hurt me. Just having a sheet to cover me touching my skin hurt so bad that I'd cry.

Because I felt like everyone else was living life while mine was on hold, the depression got even worse. I still didn't even realize that I was depressed. The worse my condition got, the worse the abuse got. My husband hated me. He couldn't stand the site of me. He took pleasure in making me cry. It was his favorite thing to do besides drink and take drugs.

One of the "treatments" that doctors usually start with is anti-depressants. I couldn't understand why my doctor put me on them along with the pain pills (that didn't even help), the anti inflammatorys, the steroids, the sleeping pills, the anxiety meds, and the muscle relaxers. At one point I was taking 17 pills a day, more if I was in a lot of pain.

I can't even begin to tell you how many times my meds were changed, or how many different meds I've tried. There were that many. You have to remember that I was married to a drug addict at the time. He took a lot of my meds. At first he was sneaking them. So I started hiding them in my pillowcase when I went to bed at night. Finally he said that since he paid for them he wanted half of them. I didn't have the energy to argue with him anymore.

Right before he and I split up I was sitting at my computer one night (about 2am) and the next thing I knew I was outside in our garage. I don't know how I got out there, I don't remember walking out there. It's like I just "woke up" (snapped out of it...whatever "it" was) and I realized that I was out there looking for a rope to hang myself.

Now, let me tell y'all. It's always been a running joke between my Sisters and I, I've always told them "If I didn't die looking cute with my legs shaved, I DIDN'T DO IT!" Lol.... But really, I'd never in my life thought of hanging myself. Ever.

Needless to say, "waking up" and realizing what I was doing out there scared the ever living shit out of me. I stopped taking most of the meds the next day. I called my doctor and we made a new treatment plan. It was then that I also decided that I had to leave my husband. I couldn't live in that misery anymore.

Over the years my doctors have tried putting me on anti depressants again. One after another. And they all do the same thing. They make me suicidal. I even had one doctor that told me the suicidal thoughts were an allergic reaction. (I mean, how stupid does that sound??) I refuse to ever take them again. Never.

Once I left my ex amazing things started happening. The pain wasn't as bad anymore. It was then that my doctor and I realized that stress is a major "trigger" for my Fibromyalgia. Since I left him my pain level, even with the worst flare ups, isn't half as bad as it used to be.

Don't get me wrong, I'm in pain every single day. People often ask me "What does it feel like?" It's really hard to explain, and I can only speak for myself but I'll try to explain it to y'all.

It almost always feels like there's a monster inside me. Sometimes it feels like there is something inside my calves "chewing" on the muscles. Sometimes it feels like there are rocks in my hip joints, which makes walking incredibly painful. Sometimes it feels like someone is in my back slicing my muscles away from the bone, bit by tiny bit. Sometimes it feels like I have the worst case of the flue that you could imagine. Always, it hurts. Always, it's painful. That never changes.

There isn't a day that I don't have pain somewhere in my body. But it's not something that I can't live with. I guess over time you get accustomed to it.

I know people (with FMS) who are on some of the strongest pain meds you can get (oxy's), I could be on them too if I wanted to. Finding a doctor that will give them to you isn't all that hard. But I don't want to spend my life in a drug stupor.

Believe me, I know that there are people who have FMS that need those meds. And I don't begrudge them that. But there are also a lot of people who get addicted to these drugs.

It sickens me that I have to take a urine test every time I go to the doctor because there are so many people out there who are drug addicts and go to different doctors to try to get more meds. I don't get it honestly.

It's bad enough that I'm on Vicodin. I'm on the weakest dosage that you can get and I still hardly take them. My doctor gave me 60 of them in January and I still have half a bottle left. I only take them when I'm desperate for relief.

That's been one of my biggest arguments with my doctors.  I refuse to be on meds that I have to take on a daily basis. I'd rather be on something that I can take on an "as needed" basis. It works for me.

The main thing that I've learned about my FMS is that I know my body, I know my level of pain and I know what works for me.

I'd prefer to do physical therapy, do some easy exercises at home and to limit how far I push myself than be on a bunch of drugs that turn me into someone I don't even know.

What would I want other people to take away from this? There's a few things I'd like for y'all to know about people who suffer from FMS. It's often called an "invisible disibility." So try to take these things into consideration....

* Just because you can't see that I'm in pain doesn'tmean I'm not.

* I often have to cancel plans, or reschedule appointments because of FMS. Don't get angry about it, try to be a little more understanding. I promise that I'm more disappointed than you are.

* Sometimes, I need help. I hate admitting it. I hate asking for it.

* Understand that sometimes while life is going on around me I'm stuck inside this body. It's a very lonely feeling.

* Please don't pity me. I stopped feeling sorry for myself a long time ago.

* Being "sick" doesn't mean that I'm not human. I hate being alone. Having a friend or family member just come and spend the day with me watching movies, laying around (or whatever) would be great.

* This isn't all in my head. I'm not imagining it. My pain is real. Very real.

* I sometimes get irritable. Can you imagine being in chronic pain every single day? Please try to be patient with me.

* I sometimes try to fake having a good day, I hate feeling like I'm disappointing you, or letting you down.

* I can't control how often, or for how long I'm going to "feel good" or have a "good" day. A good day can turn into a "fibro" day within minutes. Trust me, I wish I could control it.

* Remember that just because I can do something today doesn't mean I'm going to be able to do it tomorrow.

* I try to make the most of every "good" day that I have and I usually end up paying for it the next day. Sometimes when I have a good day, the best thing I can do (for myself) is to just relax and enjoy the day. Not get out and push myself, because it makes the next day a flare up day. I'm not being lazy, just smart.

I hope that this post has helped some of you understand this condition better. If you have any questions, please feel free to ask! I'll leave you with this quote...


MiMi said...

I always feel like a kindred spirit with people who have fibro...I have MS and it's like the "invisible" disease. For now. Which I'm thankful for, really. **sighs**

Andrea (ace1028) said...

Holy cow, mama! I didn't know all this, and wow, what a story! How crazy brave of you to share that with your readers, you rock! As for pain relief, odd question, have you tried acupuncture? It has been incredible for me in the past for pain management, and so I recommend it to any and everyone, and I have heard it is helpful for those w/FM. I'm sorry to hear that some of the meds have had that impact on you. Wow, that's not cool. Sometimes they can be incredibly helpful, but good for you for knowing that they were NOT helping you but making things worse. Thinking of you and if you need to talk I'm here!

Shawn said...

I loved reading your post, you were informative and very clear on how you want to be treated.
I was diagnosed wit FMS about 15 years ago, too bad we don't live closer because I would love to hang with you and watch a movie!
I was first put on Elavil but quit shortly after starting because of the dry mouth. I was on Lyrica but that was too pricey. Never took pain meds because I am a nurse and need a clear head!
Exercise is my relief. The endorphins are amazing pain relievers and it lasts for a couple of hours.
Take care my friend, I hope and pray you have more good days than bad.

Pattie said...

I am also a Fibro victim! You summed it up just fine. I do take Lyrica and Cymbalta and Tramadol. It helps but the flares are terrible. My biggest problem is when I do feel good I overdo. Massage therapy helps and yoga. They keep you flexable because you tend to not want to move anything. And yes people think I am fine because I do so much. I have to.

MiMi said...

I thought I commented here...didn't I? About the "invisible" disease or illness?? Anyway. This speaks right to my heart.

Dee Stephens said...

As I've mentioned before -- my Mom has this too. Her's was triggered by stress and my Dad who has PTSD. She refuses to take the medicine too and has found natural supplements that help. The biggest thing she does is the first thing she does when she wakes up is drink 4oz of Noni Juice. This is before food or anything. You can find it in the health food stores.
I'll never forget when she was trying to figure out what was wrong with her too. She too.. went through all that MS stuff. Scary.

Danica said...

Thank you for explaining this to me. HUGS

Many year ago when I was in my early 20's my family doctor said he thought I had FMS. I didn't believe him and I still don't so we don't talk about it. I'm not in the pain you have describe although on most days I have that kind of pain in my neck that sometimes it's hard to lift my head. I have not done anything for it ever and probably never will.

Hugs to you! I think of you often!

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