You can call me Eliza Jane. I'm a woman who has died and came back to life in a strangers body. Am I living some freaked out version of the body snatchers? No. It's just that I was one person BEFORE fibromyalgia and another person AFTER fibromyalgia. The person I was before died. I fit the classic fibro profile. Highly energized A type personality who worked like crazy, took care of kids and a home...and baked a perfect from scratch cake. I was a perfect size 8 and at five foot eight....well I looked really great! There were days that I honestly felt like I had it all.
That person no longer exists. I am at some level of pain and exhaustion every day. I can no longer be a work- aholic....because some days it just hurts too much to get off the couch. I have a lot of health problems that are considered overlapping fibromyalgia issues. In other words, I have headaches, depression, IBS, tingling, numb feelings in my hands, feet and face...the list goes on and on.
I can't even begin to explain the things that I've lost. My body just isn't "me" anymore. Because of the medicine and my inability to exercise, I've gained a lot of weight. I don't even look like me. I can no longer do much of the things I want to do.
Has there been any positive things to come from this? Yes. I am more empathetic of others, I don't judge books by their covers anymore. I have more compassion for everything. I see beauty in small things and feel blessed in so many ways.
I do however get so sick and tired of coping with this miserable illness everyday. The invisability of the illness just makes it worse. No one really realizes how difficult it makes life.
I heard a saying about fibromyalgia that is so very true....
"The good thing about fibromyalia is that is doesn't kill you....the bad thing about fibromyalgia is that it doesn't kill you"
My husband has Fibromyalgia, and it hard hard because it is so unknown. Also, in his case, it's even more rare so it went undiagnosed for a couple of years because he is so young and it's much more common in women.
It does cause depression - he is constantly upset that he cannot work and cannot do too much around the house. THe one thing that really has helped us is that it is considered a disability by the state of Texas - so he was medically retired from the military and he is able to receive further compensation.
People tell me all the time that they can't believe he's disabled because he doesn't look disabled; and when he has to bring out his wheelchair to go to the store, a lot of people freak out or feel awkward about it because he doesn't use one at home. But I tell them, just imagine; your husband is in the shower for ten minutes and then has to call you in to help him step out because he can't lift his leg high enough to step over the bathtub's rim. It was when that happened that the military finally stopped looking at arthritis and started figuring out what was wrong.
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"Dream as though you'll live forever, but live as though there's no tomorrow" --James Dean
http://www.progressiveu.org/user/fanaile-drupal-org
Hi Ladies, and gentelmen that may be reading this,
I was diagnosed in the spring of 2003 after years of complaing about sore joints and muscles. The pains and fatique started when I was a teenager. The depression started when I was in college. They first diagnosis, in high school, was pre-arthritis (because all types of arthritis run in my family including RA) and chronic fatigue syndrome. This was back in the early 1990's. I hear they didn't know that much yet about fibro then. Then in college I also got the diagnosis of major depressive illness. I felt like a medical freak show.
I have since developed other fibro associated disorders and diseases, and it aggrivates the pitting edema I get from my type II diabetes.
The point though is now that I have learned to live my life with fibro I don't think of it as a burden. I just think of it as me and these are the cards that I have been delt. That doesn't say I don't have bad days but it makes me able to deal alittle better.
Also as far as exercise. Studies have show that it improves the pain of fibro, as I am sure you know, but when you are in pain it's impossible. That's when I took to the pool. It's relaxing and not stressfull on your joints. Things like swimming and water aerobics. They help me feel atleast a little better day to day and I notice a difference when I don't hit the water.
I feel you and empathysize with your pain,
Lisa
I, too, lived with this dibilitating disease since 1986. I have been pretty much pain free for a year, because I found supplements that have been lifesavers! I now facilitate a fibromyagia support group. I have a two page list of things that have helped those in our group of 30. If any of you want to know what they are, please e-mail me at luv_my_grandtwins@yahoo.com or feel free to call me. 920-231-2276. It actually hurts my heart to read what you all are going through. Been there....done that. Not anymore!
I've suffered with fibro for the past 12 years - I've tried many therapies both physical therapies and medical/supplemental therapies. Fortunately, I recently found the nation Fibro and Fatigue Centers and have undertaken their protocol for treatment for the past 4 months. I have to say that I feel at least 75% better at this point. Some of the therapies have helped remarkably and some have not helped at all. The most beneficial part of the program is their multidimensional approach to this disease. As a nurse practitioner myself, the program has it's basis in hard science - so I have a deep appreciation for that. However, they don't dismiss complementary therapies just because they are not proven in scientific studies.
The biggest problem with the program is the cost. My insurance won't cover it because it embraces complementary medicine as part of the plan. However, if you can get your local primary care providers to work with you - much of the workup can be done long distance and then management can be done by phone. It's really worth a try - if you've tried "everything" already. It's worked for me.
Also, just today the CDC released information regarding their new initiative to research Fibro and Fatigue - 4 million dollars to start clinical trials!! Not that much - but it's a start. Also, they are planning to launch a national education initiative to help dismistify the diagnoses involved. This is usually the first big step in widespread mainstream acceptability of a disease process.
Luck to all