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| My own story with Fibromyalgia |
| Me at age 40 Aug. 2005 |
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| What is Fibromyalgia? |
| Fibromyalgia, (FM), or fibromylagia Syndrome (FMS), as it is sometimes called, is a complex condition that causes persistent pain in muscles, ligaments, tendons, and joints. In addition to chronic widespread pain (experienced primarily as muscle aching or stiffness by 100% of individuals with FM), this syndrome may cause other symptoms, most often fatigue (reported by approximately 90% of people with FM), disturbed sleep, and headaches. Symptoms can be made worse or triggered by anxiety, cold or drafty environments, depression, hormonal changes before menstral periods or during menopause, physical overexertion, stress and weather changes. FM can exist by itself, but is usually accmpanied by a primary or secondary chronic medical condition such as rhematoid arthritis, hypothyroidism, and, most particularly, Chronic Fatique Syndrome. However, these other medical conditions are not the source of the widespread pain. Stress or lack of sleep, further increases the severity of FM symptoms. There is no cure for FM, and it is something the victim must endure the rest of their life, with very little medications to help much. Everyone with FM is different from one another and what helps one person may not help the next person. Doctors still do not have one set of instructions on getting better. It's up to the victim to take what life they have left, and turn it into something productive. You can still enjoy life, but you must know and learn your limitations. |
| My name is Patty, and I was diagnosed with Fibromyaliga (FM) in Oct. of 2002 at the young age of 37. The picture of me above, was not a happy one for over a year. I was a much different person before FM hit me. I was hit hard too. Over the course of the summer that year, I had gone from doing everything I always have done, with a smile on my face, to someone who was frail, weak, and unable to even get from one end of my house to the other without assistance, and the smiles had all been wiped from my face. Before FM, I was so energetic...always on the go. I had millions of things to do and I wanted to take on the whole world, and oh how I loved life. I was so strong, and stong-willed too. I was a very stubborn person with a free spirit. I enjoyed so much! I loved remodeling work, hunting, biking, motorcycle riding, going for long drives, dancing, playing in the rain, and especially doing outdoor things with my kids. I loved going out on the town. Going out with my girlfriends once a month was so sweet and made me feel like a teenager having the time of my life. BUT...when FM hit me, all that was to be lost and the shell I was left with was NOT ME! |
| Now that you know what Fibromyalgia is, I can share my story. |
| At the onset of this illness, I had no idea what was wrong with me. I really thought I was dying. Being diagnosed with Fibromyalgia, at the very least, gave me a sense of still being alive. But now what? I have to live with this forever and there is no cure. I was very scared, mad, frustrated, and in sooo much pain. Pain that I could not bare, yet had to. I became very depressed. In my mind, I lost everything I loved. I even lost the will to live life. "LIFE"...which I had always cherished before, was now an enemy of mine. I went through a period of remorse for the person within me that died with that diagnosis. (which by the way, is a very common phase FM patients go though, but didn't know myself at that time.) It was a whole year of just existing instead of living. I had two choices. I could go ahead and pity myself, hate myself, and dread the rest of my life......OR, I could look at things a little differently. I started reading everything I could on Fibromyalgia. The more the better! I learned so much and read so many different versions of, "What is Fibromyalgia?". The truth of the matter is, the so called "specialists" don't even know the cause, or how to treat it. I saw so many different doctors and they just frustrated me. No medications could take the pain away. No medication could make me want to live life again. No medication was going to make it all better and yet I was on 11 different medications at one point and I was a Walking Zombie. (Literally!) I was getting no where, phsically or mentally seeing all these doctors and taking all their drugs to "help". All I did was sleep on and off all day long, and yet I was always exhausted and had NO strength to do anything. I really thought I was doomed to live the life I had at that point in my life. And it wasn't a pretty picture at all. I finally took matters into my own hands and got off all those meds, except for 3 of them that I really felt did help a tiny bit. All victims of this illness will take medications the rest of their life but it certainly doesn't have to be a lot of them. Drugs are not the answer. Drugs simply help you deal with what you have ahead of you. The KEY to getting any better with FM is exercise, and lots of it. Also Sleep but I'll get into that later. I know what you might be thinking. HOW, how in the world can I exercise when I'm in so much pain! The answer is this: if you do not exercise those muscles, tendons and joints in your body, they will become weaker and the less you can do for yourself. If you do not exercise, you WILL gain weight (as I did, and most people with FM) and the weight will only aggrivate your condition. By NOT exercising, you're actually causing yourself more pain! During exercise, your body naturally releases "growth hormone" which we are denied by this disease. Growth Hormone is natually given to your body during exercise and sleep. Anyone who has FM will tell you they don't get good sleep and most of us have sleep disorders. I myself have Restless Leg Syndrome and Severe Periodic Limb Movement Disorder. (Which basically mean I'm never at rest because I'm doing a workout in bed and I never get into the deep stage of sleep.) But after trying serveral different kinds of medicines to help me sleep better, (and it took 3 very long years) I'm now taking Trazadone (150 mg. at bedtime) and it pretty much knocks me out for the night. My husband says I still kick him occassionally but nothing like before. After 3 years, I can dream again. I wake up and remember dreams! Getting GOOD sleep is a key in dealing with this illness. Do whatever you have to, but find a medication that will let you get deep sleep. NO over the counter medications will do it for you and they are NOT ADVISED!!! They will do more damage over time, so DONT try it. And for the record...FM patients are only allowed to do LOW impact arobics. That means, bicycle riding, swimming or walking only. You have to know your limitations though and not push them to hard. Always take many breaks during the day. Relaxation tapes or music is a great destresser. But if you do those things, you're on your way to a better life...I promise! |
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| It's been 3 years now, and I can honestly say.....THANK GOD I'M ALIVE!!!! Life is so precious and so short! It is something to be cherished no matter what. Don't let something stop you from enjoying life....your family....your friends! You simply have to learn HOW to live within the disease instead of letting the disease run YOUR life. For example....I still ride on the back of my husbands motorcycle but only go for an hour ride now. (and I had to work up to that) You wouldn't belive the muscles it takes to just ride on the back of a bike. I swim 3 times a week, year round, in a warm pool. NEVER swim in cold water!!! I still love playing in the rain, and I enjoy it so much, but I don't run and play about now. Now I just raise my arms up to the sky, let the rain fall on my face, and splash in some puddles to make me happy. I love getting wet and don't mind if my clothes get wet while I'm entertaining myself in the rain. And my kids love to do this with me still. It makes me feel young and alive. I use to love cooking and spending 2 or 3 hours in a kitchen. Now, I go with more simple recipes that require me to be stand for no more than 30 minutes to an hour because if I go longer, I will pay for it with so much more pain! I sometimes even have to get a bar stool for me to sit on while I finish a recipe but I'm cooking and doing what I love, and you simply have to look at the positives instead of the negatives. Instead of doing 5 loads of laundry at once, I've worked up to two loads in a day now. Instead of never going dancing again, work up to one whole song so you can continue to dance. Dance in a different way if you have to, so you don't tire your muscles out, causing more pain. NEVER expect miracles in a short period of time. It's taken me two years to do the things I'm doing now. It's taken all this time to figure which medications work and which ones don't. I'm now taking 5 medications and one on the side for times I've overdone something. YES....I still am stubborn and overdo things at times and am STILL learning and paying for my mistakes, BUT I WILL NOT GIVE UP! I know my life is more difficult with FM. I know I will always be on medications. I know I will have fallbacks and still occassionaly have a pity party for myself. I can not tolerate any pain medications and I know I will never have a day without pain...But I'm living life again, and that means more to me than anything else. I have happy days again and I can still make others happy. I can laugh. I can see the good things that I've accomplished and I dont take those for granted. Life is still fun! And even through Fibromyalgia, I once again can raise my head in confidence, look up into the beautiful sky and say I love life, and life is worth living!. |
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| Patty :-) Aug. 2005 |
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