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Tuesday, November 1, 2011

Fibromyalgia-an explanation

So I posted a "note" on facebook last year explaining a little about this and I wanted to have this here too so people that watch me go through my weight loss journey really understand all the obstacles in my path. Is this an excuse? No! Just something I have to overcome and work through. Here is the post::



Well this has been on my mind a lot lately. I am surrounded by so many people who care about me. They all know I am sick a lot but do they really know why? Do they know what I have or understand? I have decided over these past few months that I wish I was normal...but the truth is-I am not. So I figure maybe if people understand me more, maybe I will lose less people in my life. Please understand I am not looking for sympathy....just trying to explain me. So here goes....
I have Fibromyalgia. I have actually had it since high school. I have my good days and my bad days. Fibromyalgia is a chronic pain disorder characterized by widespread pain of the muscles and bones, stiffness, general fatigue, and sleep disturbances. The underlying cause remains unknown, yet most researchers agree that it is related to the nervous system. Here is a list of some of the common symptoms:
Symptoms of fibromyalgia include:

* Chronic muscle pain, muscle spasms or tightness, weakness in the limbs, and leg cramps
* Moderate or severe fatigue and decreased energy
* 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
* Difficulty remembering, concentrating, and performing simple mental tasks
* Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
* Tension or migraine headaches
* Jaw and facial tenderness
* Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
* Feeling anxious or depressed
* Numbness or tingling in the face, arms, hands, legs, or feet
* Increase in urinary urgency or frequency (irritable bladder)
* Reduced tolerance for exercise and muscle pain after exercise
* A feeling of swelling (without actual swelling) in the hands and feet
* Painful menstrual periods
* Dizziness
*Fibromyalgia Tender Points-usually will have 11 of 18 of these to be diagnosed

No one really knows what causes it & there is no cure. I found something that pretty much explains what people like me go through on a daily basis....I will put the link at the end.

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This is the letter I found online:

If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.


Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies.
written by http://www.fms-help.com/healthy.htm
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Anyway this is me. I am putting myself out there. I hope it helps. Again I am not looking for sympathy, just understanding.This disorder doesn"t define me, but it does affect my every day life.

Here is a few other links to check out if you're interested:





So this was my post on facebook. I hope it makes you understand me more. Thanks if you took the time to read this. 





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