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Fibromyalgia - an Invisible Illness

So as you might already know as my readers, my mother and my grandmothers have Fibromyalgia as well as a friend my own age.  It is something that Doctors and the medical world are becoming increasingly more familiar with, FINALLY.  I have written about my experience of growing up with a mother in pain, specifically FMS pain in this blog post  "Alexandria-hollywood-e.blogspot. i-am-child-of-fibromyalgia" 

That post was mainly a series of memories and anecdotes and looked at who I am now based on living with a parent with illness, making the point that everyone is affected by this illness, not just the diagnosed.

Fibromyalgia is "a common syndrome in which people experience long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, anxiety, and other symptoms." 1. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. 2.

My mother embodies all of these things.  Some days the symptoms lay dormant and other days she wouldn't be able to walk.

Men and women between 20-60 are susceptible with certain triggers and like some doctors believe to be hereditary.  However women are more likely to develop FMS symptoms.2. Triggers include 

  • Physical or emotional trauma
  • An abnormal pain response. Areas in the brain that are responsible for pain may react differently in fibromyalgia patients.
  • Sleep disturbances, which are common in fibromyalgia patients. 1. 
The scary part is that FMS allows the brain to mimic pain.  Pain reactions occur throughout the body in the form of fatigue, sleeplessness, depression, anxiety, chronic neck and back pain and other forms without a physical stimulus.  An an auto-immune illness the body is actually working against itself and there is no cure. Exercise, relaxation and stress-reduction measures also may help. 2

  • The pain is described as deep-aching, radiating, gnawing, shooting or burning, and ranges from mild to severe.
  • Pain is the NUMBER ONE symptom.  The exact locations of the pain are called tender points. Tender points are found in the soft tissue on the back of the neck, shoulders, sternum, lower back, hips, shins, elbows, and knees. The pain then spreads out from these areas. 
  • Pain can increase with activity, cold or damp weather, anxiety, and stress.
  • People with Fibromyalgia tend to wake up with body aches and stiffness. For some patients, pain improves during the day and increases again during the evening, though many patients have day-long, non-stop pain. 1.
My mom has lived with this illness for all or most of her life, with the majority of doctors telling her she was making  it up or just insane.  The pain cannot show up on an X-ray.  Where does the fatigue and pain come from? How come she couldn't get out of bed.  Why was she depressed, anxious and feeling alone, not being able to complete normal day to day activities? What could she do to help herself.     

From the Mayo Clinic Expert: Many of the people who come to our Fibromyalgia clinic are perfectionists who have very high expectations for themselves; likewise they can't adjust to more realistic expectations after they develop Fibromyalgia symptoms. These people have difficulty learning to relax. They may push through the pain and keep doing activities to the point they crash and burn and need extra time to recover.
So the pain keeps reinforcing itself in a never-ending cycle. People report lower levels of pain when they can slow their heart rate by deep breathing and doing other relaxation techniques. In our clinic, we teach people about tools they can use to tap into what they have within their own power.  3.
My mother has trouble slowing down sometimes.  In the beginning she had a newborn and was recovering from surgery, which was prolonged due to FMS.  For the longest time she was not herself.  Then her pain management was chiropractic, rest, mediation, and soon thereafter, the PILATES PERFORMER Pilates machine.  Its a system of pulleys and levers and a sliding seat that allows for deep stretching according to the Pilates workout.  Many dancers use these machines to increase flexibility, to tone and to maintain lean muscle mass and strength.  It definitely aids in strength conditioning.  
Without a pain management plan it would seem impossible to get through the day, let alone bear any responsibilities.  I know it has taken a toll on my mother to be a mother, wife and leader for all these years.  She has done her best to deal with the pain, people's judgments and misunderstanding about her pain and her own ego.  But it's important to make your individual health a priority and know it's ok to ask to help!  There is no magic pill, diet or surgery but there are ways to make living more bearable and livable and by surrounding yourself with people who will help you with pain management.     
The WRONG thing to do is to live in denial, become angry with your body, find self medication more effective and to not slow down.  Living with FMS requires some sacrifices and it definitely reveals many limitations but it doesn't have to become who you are or limit your abilities to be happy.  Positive energy and surroundings will help you get through as well as support groups that may be available.  You should never feel like you are alone or that no one understands or that you are making up the pain.  FMS is a REAL illness affecting millions of people.  You are not alone.  When people learn they have Fibromyalgia, they can go through the stages of grief and loss — including experiencing anger and attempts at bargaining. When they get to the peace of acceptance, that's when they can realize there are limits to what medical technology can do. 3.
Self-medication and numbing is a bad idea.  I know many people, who are frustrated with the pain, resort to heavy painkillers and alcohol to manage the pain.  Not only does this aid depression and anxiety it also further hurts the body and is only a temporary fix.  Becoming reliant on numbing agents will not improve your quality of life or those lives of your loved ones.  PLEASE GET HELP.  There are some medical options out there now that help with depression and pain management.  

The MAYO clinic site emphasizes SELF-CARE and have listed examples on how to take care of your pain. 4.

  • Reduce Stress
  • Get enough sleep
  • Exercise regularly
  • Pace yourself
  • Maintain a healthy lifestyle  
Not only is this important, but it's important for loved ones, family, friends to understand these necessary steps to keeping an FMS sufferer healthy.  It's a tough adjustment for anyone to endure especially when it means someone you love is in constant pain.  On both sides, one should always respect each others experience with this illness.  
Find a support group near you and create a pain management plan.  Explain to your loved ones your limitations.  This fight is not just for the diagnosed, it affects the entire family.  Know there's help out there!

Any thoughts or questions feel free to email me:
 -Alexandria in Hollywood

1. pub. feb 7 2010. jun 28 2011

2. pub. Jan 22 2011. jun 28 2011

3. pub Mar 19 2010. jun 28 2011

4. pub jan 22. jun 28 2011
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