Friday, May 14, 2010


I am a regular lurker of blogs and discussion boards.  I don't generally post comments or "follow" anyone.  I read a blog fairly regularly in which the blogger uses incorrect punctuation and grammar.  It makes me nutty, but I keep reading because she reminds me of the notes we used to pass in high school.  Last week sometime, she did an entry into her blog that has been on my mind this week.  She used the ABC's and described her life.  You know... A is for Awesome Family!  It was fun to see how she used the letters XYZ!  Here is my attempt to do the same only using FIBROMYALGIA and my life with it:

F - Fibro Fog.  The Double F.  The other "F" word.  Forgetfulness.  Another F word that can describe the Fibro Fog. 

I - Insomnia.  So, Fibromyalgia is a smorgasbord of catch 22's.  If you are tired the fibro pain is worse.   But, as the pain increases the less you sleep.  When I was younger, sleep was my favorite hobby.  Now, I am lucky if I get 5 uninterrupted hours a night.

B - Bitch.  I feel like that is all I do.  Complain.  I used to enjoy complaining when I needed to get things off my chest.  Now, all the joy is gone from that hobby.  So what?  I hurt today.  Just like yesterday.  Nothing new.  Joy - gone.

R - Relief.  There is none.  Ha! 

O - Obsessive.  My state of mind when I am in pain.  I am obsessive about the pain or any relief (ha!) I can find.  Which only makes things worse for the fatigue and the pain.

M - Massage!  They feel so very good!  Every Fibro patient needs multiple!

Y - Yikes!  Everyday, that is a word that goes through my brain as I try to unbend from a position I have been in too  long.  Yikes!  Those muscles HURT!

A - I am ABLE to cope with this.  And that is a great realization that I have had recently.  It sucks. But, I can do it!

L - This is a LIFE LONG LIFE style change.  Get used to it!

G - Weight GAIN.  Just what every woman wants.  But, that is a side effect.  You get so fatigued and you hurt so bad, moving is not an option, never mind exercise. 

I - Irritating.  That's all.... it is irritating! And not just for me, I am sure.  For everyone that gets to deal with the Fibro me.

A - Fibromyalgia may be with me for the rest of my life, but it AIN'T going to rule my life!  Hell  Ya! 

Thursday, April 29, 2010

6 Months...

The doctor’s appointment where I was diagnosed was on October 30, 2009. Today is April 29, 2010. I have been living with the knowledge that I have Fibromyalgia for 6 months. Amazingly, I have survived. I have even started to figure out how to live with it. And, I have decided that my daily life is easier to live now that I have the knowledge. I get to blame things on Fibro! I lost my keys this morning – or rather, I didn’t remember where I placed them the last time I used them. Guess what is at fault for that? Not lil ole me! Nope – it is “Fibro Fog”! I love the term “Fibro Fog”! I still get annoyed when I forget what I am saying in the midst of a sentence or forget to whom I have told a story. But, now that I know what it is and that it really isn’t my entire fault for being a blonde, it makes the “Fog” more livable.

This past winter was a difficult one for Oklahoma. We had some MAJOR SNOW STORMS. Which, I loved when I lived in Michigan in my youth. This year, however, I noticed that it was difficult to move. My legs ached daily. I wanted to bury myself under the covers and hibernate until the sun came out. And for the first time in my 31 years, I was looking forward to spring. Up until this year, winter was my favorite season. You get to wear thick and comfy socks, sweaters to cover your winter weight gain, wear your favorite leather winter coat and coffee and hot cocoa taste so much better when it is cold outside. But, this winter, I couldn’t keep warm, I became very acquainted with my heating pad, and insomnia ruled my life. Everything hurt to the point of tears at the end of the day. I got nothing accomplished at home and I became a bear to live with – my poor family! The hardest is when the kid wanted to go outside and play in the snow; I got to watch from the window. Nothing is more depressing.

But, spring has sprung. FINALLY!

Thursday, November 5, 2009

The internet, oh the lovely internet.

Being new to Fibro and having all information relating to Fibro at the tips of my fingers is not a good thing, me thinks. As I said in the blog yesterday, I don’t know whether to curse it or praise it. The praise is the easy part. With the internet I have access to others that have this condition so I don’t feel alone in it. The internet allows me to research to my heart’s content about all problems and possible solutions to Fibro. This is where it gets murky.

On the Sunday after my failed attempt with Lyrica, I took to the internet like a hound. I wanted to know if the reaction was normal (I called the pharmacist, but needed more info). I wanted to know if that was all there was for me to do and I was doomed because of the sensitivity to this drug. I wanted to know if there was a way to control this without drugs. And, this keeps my doctor from answering 100 calls a day as I remember new questions that I have on this condition (I am sure he is thrilled).

I came upon a discussion board of Fibro sufferers. I found it comforting, informational and terrifying. As I was reading there were a few reoccurring themes in the posts. Some of them being; pain (unrelenting pain), depression, disability, and most of them had other syndromes or conditions in addition to Fibro. Don’t get me wrong, there were quite a few posts that were hopeful, cheerful and upbeat. I just didn’t focus on those. This scared me. This depressed me. This caused me to focus more on the pain, pain that I had been able to basically ignore for years. Which made me mad. It is a bad cycle.

I posted something on this discussion board speaking of my terror over having this. And one of the very wise moderators told me that I was reading too much into it. That the people that are on the boards are in pain and having a “flare up”. And when a person is having a “flare up” they won’t write anything but bad, sad and depressing things (I am not quoting, just writing what I got out of it). If someone is feeling well they are out and about enjoying life, not focusing on the discussion board. This made me feel marginally better.

But, still, I don’t want to be in pain forever. I don’t want this to morph into some other condition. I don’t want to be so bad off that I have to quit working. At this point, I have become addicted to finding out information. I check the discussion board about 100 times a day to see if there is something new. I type “Fibromyalgia” into Google just about as often. Alas, there is nothing new. No magical cure, no death by Fibromyalgia, no ground breaking discovering on how to live with this. It is the same. And so am I. I think that this may be the first step in dealing with it. And, I am happy for it.

Wednesday, November 4, 2009

I don’t know whether to curse the internet or to praise the internet. There is a plethora of information on Fibromyalgia to read. Part of me is thrilled to see that most of the symptoms that I have are normal to Fibro. First is the memory loss. They, people, call this “Fibro-Fog”. Really; this is the truth. Here are the symptoms of “Fibro-Fog”:

• Mental confusion
• Fuzzy thinking
• Short-term memory loss
• Inability to concentrate or pay attention
• Language lapses

Those sound like fun, right? To be honest, I don’t know what they mean by “language lapses”, but other than that, I have every one of those symptoms. It ain’t fun. At all. There is nothing like feeling inadequate in typical, easy, everyday conversations.

There is debate over what causes fibro-fog. There is debate over what causes Fibromyalgia in general. Most physicians can agree on one thing, though. They agree that with Fibromyalgia comes regular fatigue. Fibro patients normally lack sufficient restorative sleep. Not getting enough restorative sleep impairs a person’s capability to recall information and function at a regular level of mental effectiveness.

In every article I read about Fibro-fog, it reiterates that this is “not a psychological condition”. I think they do that to constantly reassure us that we are not crazy. And, when you are experiencing this fog, you do feel like it is a psychological condition. You feel psycho. Crazy. Helpless. Stupid. People with the “Fog” tell me to take notes, keep journals, keep a good sense of humor and to be patient. This doesn’t help my memory, but maybe it will help my peace of mind. I have a sense of humor, it is just a dry sense of humor. So, if I am taking pot shots at myself for forgetting to take my keys out of the ignition of my car... I am laughing inside.

On a good note - yesterday was a great day. And, I think today is shaping up to be that same way.

Tuesday, November 3, 2009

The start of my journey

On October 30, 2009, I went to visit my doctor about some health symptoms that I was concerned about. Through internet research, I had self-diagnosed myself with Fibromyalgia after years of pain; most particularly because of some recent developments in my health. But, to be truthful, I knew that I had Fibromyalgia about seven years ago.

Seven years ago I was working in an occupational health clinic. Prior to that, I had spent 4 or more years working in pharmacy. That said, I knew just enough about medicine to be dangerous to myself. I was having what I thought was minor back pain and went to a doctor that had an office just across the hall from my office. I was hoping for pain medication or anti-inflammatory drugs to ease my back pain. What I got was an antidepressant or anti-anxiety drug. He also told me that he suspected that I had something called Fibromyalgia. I was 22 or 23 years old at this time; I knew everything. And, I knew that I didn’t have Fibromyalgia. At this time, Fibromyalgia was just becoming an acceptable diagnosis in the medical field. Until then, it had been a stamp that doctors gave to women they thought were depressed. I wasn’t depressed. I wasn’t a hypochondriac. I didn’t have Fibromyalgia. I just had back pain. Give me drugs!

He told me he thought that I had high anxiety and that I carried my stress in my back. He gave me Lexapro to control the pain. It worked – kind of. The pain has always still been there. But, now I had a reason; anxiety and stress. If I could just de-stress then the pain would go away. Right? Of course, how do you “de-stress” your life? You can’t, or rather, I can’t. I am a type A personality. I like to have everything just so. My way. I couldn’t get rid of my personality so, I dealt with the pain.

Recently, I have started to forget everything. I have also started to have “Charlie horses” in my legs on a regular basis, symptoms of Irritable Bowel Syndrome or IBS and extreme fatigue. That was enough for me to start researching my symptoms. Thankfully, before I drove myself crazy with hundreds of possibilities of various diseases, I remembered the appointment I had with a doctor seven years ago. I remembered he told me about Fibromyalgia. So, I started there.

My search on the internet began and ended with typing this phrase into Google; “Symptoms of Fibromyalgia”. All my symptoms were there. I was done. I had figured it out. Yeah me! I called the doctor and made an appointment.

On that Friday, I printed out my symptoms (being type a, I had done that so I could go in organized) and off to the doctor I went. I had not only convinced myself that I had Fibromyalgia, but I had convinced myself that I was going to be thrilled to know that I was right just so I knew that I wasn’t crazy.

I was crazy. But, not because I was wrong; because I was right. I have Fibromyalgia. And I am terrified. I spent the first part of my doctor’s visit “convincing” the doctor I had this then spent the second part of the visit trying to convince him that I didn’t. Once he agreed, I realized that this was forever. I was going to have this FOREVER. I don’t want to have a “condition”. At 31, I didn’t want to have something to battle for the rest of my life.

He calmed me by telling me there were drugs. If I had done more research before going, I would have known this. He was going to start me on Lyrica. Seven years ago they didn’t have a drug that could ease Fibro pain. Now, they do. I was to take it twice a day and I would feel wonderful (at least that is what I heard). My second dose (Saturday morning) scared the beegesus out of me. I felt like I had drunk an entire bottle of Vodka on my own. I couldn’t stand without swerving; talk without slurring; walk without stumbling. It was awful. I had to sleep it off. Not what I had in mind for a nice Saturday afternoon. When I woke up, I even had the munchies like I had been drinking all night. It was awful. So, Sunday morning I started my in-depth research into Fibromyalgia.

More to come soon!