Friday, September 11, 2009

Life with Fibromyalgia.

As my description says, I have decided to start this blog to raise awareness about Fibromyalgia (FM). What is a Fibromite? It is a slang term for someone with Fibromyalgia. I am a Fibromite. I have a very severe case of FM that has left me disabled. Many people have been led to believe that Fibromyalgia does not exist and it's "all in our heads". Others have been mis-lead, by commercials for drugs that are used to treat Fibro, into thinking that Fibro is just a matter of muscle pain that is easily treatable. For some people this is the case, but for most Fibro is much more than that.
Fibromyalgia causes severe deep muscle pain and painful "trigger points" throughout the body. This pain can at times be excruciating and nothing can be done to aleviate it. Many days, I feel like someone is trying to "snap" my bones in half. I ache all over, all the time. Even though I take regular prescribed doses of pain medication to treat the constant pain, and another pain medication for more severe "break through" pain, I always have some level of pain to deal with.
As well as pain, Fibromyalgia gives me a sense of "just not feeling well", like I feel when I have the flu, only I have no outside signs of being sick. I don't have a fever, but I have the chills and cold sweats that I feel when I do have one. I feel nauseas most of the time, but rarely vomit. I have dizzy spells, feel weak in the knees, and sometimes I get this sense of a mild "electric shock" feeling that runs through my head and I can hear it in my ears.
Constantly feeling sick and being in severe pain is very frustrating and cause alot of stress, anxiety, and depression. Fibromyalgia also causes Irritable Bowel Syndrome (IBS) and GastroEsophageal Reflux Disease (GERD). It is also related to Sleep Apnea and Restless Leg Syndrome (RLS), I have both. I have a C-PAP machine for the sleep Apnea, but it is very uncomfortable, and I cannot get used to wearing it. Many people, including myself, have weight gain from FM. Also, I've gained weight as a side effect of two of the medications I have been on to treat my pain and depression. However, doctors highly suggest maintaining a low, healthy weight to help with FM. It's a bit difficult to lose weight when you are taking medications that induce weight gain.
Fibromyalgia is usually triggered by some other underlying problems. Such as viral diseases or trauma. I have Epstein-Barr, I've been treated for Lyme's disease, and I have the Hepatitis-C anti-body. (Thank God I don't have the virus). I also have Herniated discs in my cervical and lumbar spine, bulging discs in my lumbar spine, Degenerative spinal disease, degenerative joint disease and arthritis. All of which also cause chronic pain. I have neoprene knee braces for both knees, and walk with a cane. I have to use a shower seat to take a shower along with my husbands help to wash my hair and back. If I take a bath instead of a shower, he has to help me in and out of the tub.
Fibromyalgia is a silent disease. If you look at me, other than my weight and using a cane, you would never know I was sick. This is the case for everyone with FM. Some days can be worse than others, some days you feel fine, almost as if there is nothing wrong with you other than a few aches. Usually the weather affects how you feel. Chilly, damp, rainy days are the worse. Today is one of those days. I have been in excruciating pain for most of the day. I took my pain meds and have found a bit of relief. Just enough to get this started. Sometimes, the pain varies from hour to hour and not just day to day. I never know how I am going to feel when I wake up. This makes it difficult for me to make any definite plans with anyone, to do anything. Many people see me as unreliable, because they don't understand this disease. Unless you, or someone you know has Fibromyalgia, it is difficult to understand. That is why I have been doing research on the internet and talking to other "Fibromites" to learn more about what I am dealing with. This is also why I decided to start this blog.
I have a very strong faith in God. After praying about why I have this, and what I am supposed to do with it, it came to me to start a blog to help raise awareness of this disease.
I will try to post everyday if I can. If not, at least a few times a week. I will post how I am feeling, what the weather is like, what I am eating, what medications I am taking, what happens when I go to my doctors appointments,  and any information I come across on the internet or when talking to others with Fibro.
If you have found my blog, and you have Fibromyalgia, please comment on how you feel, and what works or doesn't work for you.
Soft hugs to all my current and future fibro friends.

6 comments:

  1. What a great blog! Laurie, I am glad you started it. You are a brave woman!!!
    Svetlana

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  2. Laurie, I am 24 and your words almost felt as if I was talking. I have many of the same symptoms and many others diagnosis' as well. I am also in pain everyday and struggle everyday. I am taking around 40 pills a day (if I remember them all). I don't want to be on all these drugs but the pain is unbearable... sometimes I almost black out from it. I was wondering the same question as you about why I was given this, is has to be for a reason... I am able to push through the pain to do things I love or benefit me, but I am finding that all my progress I made in the three month medical leave is gone because I had to start back part time, I am afraid I need to be off work in order to try to get better... Are you off work as well? I found you on facebook, you are welcome to write back, thanks for doing this. -Julia Fraley

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  3. Julia, Yes I am not working. I had to go out on disability. I was lucky, the doctors that I worked for carried a disability insurance for their employees. I was able to collect disability through them. I did apply for Social Security Disability and was turned down. I appealed the decision, got a disability lawyer, and my appeal hearing is coming up in October. I won't get any more money than I get now, but Medicare payments will come directly from my check and that's one less thing I have to try to remember. I'm glad you related to the blog, and sorry at the same time.
    Svetlana, Thank you.

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  4. I'm so glad you found my blog and in so doing, I've been able to connect with you. I don't have it as severe as you, but I felt in part like I was talking in this post! Wow. And I can hardly believe all those other things you said you have. Oh my goodness, that is sooo hard.

    I look forward to getting to know you more!

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  5. Thank you for sharing your story! Hope that you can find comfort through online support!

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  6. Hi Laurie, I'm a fellow fibromite so I understand some of what you're going through. Moist heat is something that helps me quite a bit, as well as taking muscle relaxers at night. I'm trying to think of the other things that help me but I'm drawing a blank (it's the fog!)

    Gentle hugs to you!

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