Sunday, October 17, 2010

What is Fibromyalgia?

If you or someone you care about has been diagnosed or thinks they may have Fibro, there are a lot of unanswered questions that one site alone just doesn't seem to be able to comprehensibly answer. I know that this blog cannot do what these carefully crafted websites cannot do, but I want to try to combine all the information that I have read on so many different websites, books, and from individuals who have been dealing with this syndrome.

If you were to begin to look into this thing called Fibromyalgia, you would see a general list of symptoms that might look something like this one below. No one person is the same as the next, and some symptoms may come and go. This magician (now you see it now you don't) like list of symptoms often leads many who have Fibro to think they are crazy, or imagining the symptom they had yesterday or even ten minutes ago.  It's very easy for me to convince myself of things like that, but I had it explained to me this way... Giving birth was very painful, but the next day, you might remember it hurt a lot, but you cannot begin to remember exactly how painful it was. No matter how traumatizing the pain was in the moment, most women would do it again. At least with pregnancy, you have something good to show for all the pain you just experienced, but there is some truth to the idea.

The typical list of symptoms
  • Joint pain
  • Fatigue (moderate of severe)
  • Aching of the skin or muscles
  • Pain that jumps from one spot to another without reason (migrating pain)
  • Brain fog
  • Jaw and face pain
  • IBS (constipation and or diarrhea)
  • Feeling anxious or depressed
  • Painful menstrual periods
  • Chronic muscle pain, muscle spasms or tightness, weakness in the limbs, and leg cramps
  • Tension or migraine headaches 
For years I've dealt with issues, illness and just a variety of things that I never even thought about blaming on Fibro. From migraine headaches (from age 7) to chronic female issues (most of my life after puberty), I had decided that I was either dying or falling apart slowly. My mom told me that she remembers me asking her if I could soak my feet because they hurt, quite often. I spent a great deal of time being sick as a young person, and having doctors making me feel that it was all in my head, or that the issue I was currently suffering from (singles in one case) had to be the affect of bad choices I had made, or that I was just battling a low immune system. They spent a great deal of time trying to test me for AIDS, STD's (even after I told them I had never had sex and had not used drugs)and a variety of other diseases.  I complained that I was tired all the time, so they tested me multiple times for Diabetes.  I was having anxiety attacks and they were sure it must be Asthma.  The pattern continues into my adult life when I was in so much pain and having so many female issues, such as chronic reoccurring yeast and female infections, pain during intercourse, low sex drive (why would I want to when it hurt?) depression, anxiety, fatigue, migraine headaches, joint pain, and the list goes on.  The doctors would look at me confused and bewildered when my test results would come back negative. One was sure my husband had cheated on me and that I must have an STD.  She even tried to convince me that you could contract some STD's from toilet seats. On more than one occasion I was told, "You are just depressed."

I would go into the office with a list and end up in tears as I told the doctor what I wanted him to figure out. Why am I having this issue? Why am I hurting like this? Why am I tired all the time? What is causing this? Am I dying? Am I crazy? I wanted answers, not a medication that would make me forget the symptoms were there. I tried to keep most of the symptoms secret because I knew that people would think I was making it up, or that I "Liked being sick" or "Just wanted sympathy." On the faith side of things, it was hard for me to believe that God really gave a flying flip about me when time after time after time, I was ignored as I begged for healing or at the very least, "Just take a few of these issues away from me!"

I had read about Fibro, but in all honesty, I thought it must be what they labeled people who were crazy or they were tired of dealing with. BUT I didn't know the history of Fibro or the history of many other diseases that were once labeled syndromes... More on that later.

Then, a wise doctor that I trusted, asked me after I sat if in his office crying for fifteen minutes while I explained my list of maladies, if I had ever heard of Fibromyalgia, and I said, "The hypochondriac's disease, right?"  After he laughed, he told me that he thought it was a legitimate condition and that I should read up about it, so that's what I did.  After I checked off just about every symptom off the normal lists one finds on the Internet, I continued to look, and I found these other things you might be dealing with and a host of other intriguing info that I will give you as this blog continues. Why? BECAUSE it's too much into to digest in one sitting... At least it is for me.

These are the things a lot of sites/books leave off the list.
  • Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, vibrations, and cold
  • Numbness or tingling in the face, arms, hands, legs, or feet
  • Increase in urinary urgency or frequency (irritable bladder)
  • Insomnia or waking up feeling just as tired as when you went to sleep
  • Stiffness upon waking or after staying in one position for too long (even sitting comfortably)
  • Sensitivity to fabrics
  • Women are prone to yeast/female infections and a slew of other female issues.
  • A feeling of swelling (without actual swelling) in the hands and feet
  • Acid reflux
  • Hair loss
  • Lipomas
  • Impaired language
  • Noise sensitivity
  • Profuse sweating
  • Nose bleeds and hemorrhoids
  • Time, math and spatial problems (some have a variety of labeled learning disabilities)
  • Allergies
  • Ear infections
  • Low functioning immune system
  • Shortness of breath
  • Sternum pain (costochondritis)

There are many conditions that seem to overlap with Fibro. 
  • IBS
  • TMD (Temporo-mandibular disorder)
  • Chronic fatigue syndrome
  • Interstitial cystitis
  • Restless leg syndrome
  • GWS (Gulf War Syndrome)

"It’s an illness that has symptoms that get better/worse
on a day-by-day basis. One day the irritable bowel seems
like the worst symptom, the next day it’s the panic and anxiety,
the next day it’s the pain."

That's not my quote, and I don't know who it belongs to, but it seemed to me to be quite correct.  I hope you can forgive me for not being able to tell you the name of the person who said it. 


There are many great message boards where you can find others who are dealing with the same issues you are. The one I have come to enjoy is http://www.dailystrength.org/c/Fibromyalgia/forum

I encourage you to find someone who understands, or will try to understand, and talk to them. Whether it's a message board, a therapist, support group, or an empathetic friend, you need to find someone you can trust to vent these issues and hurts. Having people like that has been one of my saving graces. It kills you slowly to know that the person you are pouring your heart out to doesn't believe a word you are saying. I suppose that goes for just about everyone in every aspect of life. We all need someone we can talk to openly, without feeling condemned or judged.  

I am blessed to have many friends and loved ones that will allow me to talk to them about my Fibro. My husband has been a huge blessing. There are so many women I've talked to whose husband tells them they are just being lazy or they are hypochondriacs.  

So, I will say a special word of thanks to those who have been supportive even when I couldn't put into rational words what I was feeling. You are a treasure and a gift from God.



On my next post, "But...you don't look sick." I will talk more about my faith and dealing with the mindsets of people who love me, my own way of thinking, and how God thinks about me.

5 comments:

  1. I really enjoyed you post. I have a post also its called life under the bridge because I live 50 miles below the Mackinaw Bridge in the lower pennisula of Michigan
    tloree

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  2. Hey! Fellow Blogger, you must send me the link!

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  3. This is just a beautiful blog and i will definetly be a follower...already have it on my Favorites! Thanx for taking the time to do this...just wonderful! God bless you! Love, Tory (Jorgee)

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  4. I am from DS.. my screen name there is Lorena72

    I look forward to reading your future posts!!!

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  5. What a great beginning to your blog! REALLY looking forward to your next post, too!

    I'm a fellow believer, doing my best to conquer, too!

    Joyfully,
    renee

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