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Fibromyalgia is Progressive Disease
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An_247984 posted:
Fibromyalgia is progressive. The medical community, who tend to manage everything in compartments, will come to this conclusion once they start doing thorough histories and connecting the dots. Here is how it progressed for me.


Childhood: Sleep disturbances, momentary bouts of RLS, and oversensitivity to light and sound. As a child I was a sleep walker. The sound of the television would often make me feel sick. Sometimes my legs and feet were desperate to walk or run even though I was tired.

Adolescence: By the time I reached adolescence I could not fall asleep if there was any noise in the house or any light entering my room. The sleepwalking stopped but I would often have lucid dreams or the sensation I was out of my body after falling asleep. My periods were painful, lasted for 7 full days, and very messy. My hands and feet were always cold.

Early adulthood (18 - 27) By the time I started college I had difficulty falling asleep. This is when the sleep disorder started to blossom into something unmanageable. In addition, I was diagnosed with IBS. I also began to experience anxiety and "fibrofog" although I didn't know what it was. I also developed deep muscular "knots" near my shoulder blades that would not go away with massage. All of my earlier symptoms continued and I developed PMS and chronic yeast infections. I also seemed to catch every cold and flu around.

Adulthood (27 - 39) At this time I averaged 3 hours of sleep a night. Falling asleep and when I did fall asleep I was awakened by what "jolts of anxiety" where my entire body would jolt awake as though electrocuted. All of the above listed symptoms continued. In addition, I started having stabbing pain in my neck and upper back.My back felt like a rock - the muscles were always hard. I was sick almost all winter long with colds and flus. I was suffering much.

Mid-life- All of the above listed symptoms continued. I developed pain in my neck and lower back. Got an MRI and was diagnosed with osteoarthritis. Still suffering much. By age 48 I began to have all over body stiffness. I couldn't stand the pain of being seated for more than an hour. I could only work standing up. I went to a surgeon who sent me to rheumatologist who diagnosed me with fibromyalgia.

Polygenus: My 21 daughter, since she was a child, showed similar oversensitivities, a proclivity for sinusitis, and was diagnosed with a circadian rhythm sleep disorder with difficulty falling asleep and staying asleep. In addition, she sometimes feels like she's looking through a fog (like the claratin commercial). I took her to the same rheumatologist (at age 21) who diagnosed her with fibromyalgia as well. Trazadone has helped her sleep disorder immensely.

I would like to add that I've worked part-time most of my life because of the debilitating effect the untreated sleep disorder had on my life. Doctors I had seen truly felt that they could do nothing for me at the time. Also, my appearance has always been one of good health. I'm not overweight and have been an athlete all my life. So you see, my outsides truly do not match my insides. Treatment for me has been about 40% effective which I appreciate.

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agrapina responded:
Hi everyone, new here but not to Fibro. My first symptoms were excruciating lower back pain, tender points and extreme fatigue.

20 years later it's intense body-wide pain and stiffness among
the myriad of other symptoms. So, yes, I absolutely agree.
Fibro or whatever else this monster is, it's progressive.
 
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Randm2220 replied to agrapina's response:
I agree that it is progressive! Totally!
 
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schrode replied to Randm2220's response:
I had migraines by the time I was 12 and was oversensitive to light and sound.

Deb
 
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annette030 responded:
"Progressive" to a medical person means something is structurally going bad, like arthritis gradually destroys the joints.

Since FMS does not do this, but seems rather to do neurologic things that cause pain or other symptoms, but structurally leaves things alone, it is not considered "progressive".

"Progressive" is considered a medical term, not a word that is used the way we are used to it being used.

Please do not concentrate on a single word.

Take care, Annette
 
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Anon_2912 responded:
Not progressive.

We just become more sensitive...
 
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Screennamesrdumb replied to annette030's response:
It may not be considered progressive now, but I believe it will be and should be. It appears to begin at birth and progress through midlife - perhaps even afterward. Progressive means "Happening or developing gradually or in stages; proceeding step by step."
 
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Screennamesrdumb replied to Anon_2912's response:
Becoming more anything indicates progress as well.
 
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annette030 replied to Screennamesrdumb's response:
There is a standard definition, which is what you posted, and a medical one which, unfortunately is totally different.

It is silly to argue about it, as we all agree on what is going on, even the research people who say FMS is NOT a progressive disorder, know that the symptoms do often get worse.

Take care, Annette
 
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fitzgift responded:
I remember as a child to be sensitive to light and still am at 70. I have had fibro fog and all the above and yes it has gotten worse My biggest battle now is my nerve pain in my arms ,hands legs and feet. I think I have found a product that helps me it is called NerveFix through Swanson I do take a Lyrica 50 at night and the NerveFix for daytime sofarsogood
 
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Anon_2912 replied to Screennamesrdumb's response:
I guess for me I consider progressive as actually destroying something in your body.

Fibro does not do that.
 
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Screennamesrdumb replied to annette030's response:
Medical Definition of Progressive: " Progressive: Increasing in scope or severity, advancing, or going forward. For example, a disease that is progressive is worsening."

Step one in better treatment for Fibro patients - acknowledge it is progressive and take appropriate histories which in turn will lead to better research studies.
 
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Screennamesrdumb replied to Anon_2912's response:
The medical definition for progressive is defined as increasing in scope, advancing, or going forward. The language we and the medical community use when defining this disorder is very important as it defines what we actually go through. It is imperative we alert our doctors to the truth about fibro's progression so they do better research studies and learn to take better histories. The result could mean better treatment - maybe even a cure some day.
 
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Anon_2912 replied to Screennamesrdumb's response:
FM is extremely painful especially as we age.

It does not progress, we just age, therefore it seems like it does.
 
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Screennamesrdumb replied to Anon_2912's response:
Disagree. Perhaps use the word "I" here. For example, I didn't experience muscle pain until last year. Now I have the muscle pain along with a long list of other fibromyalgia symptoms which have accumulated over the years - since childhood.


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