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Living Better With Fibromyalgia (FM)

Updated on April 26, 2016
Lesley Neeley profile image

Lesley advocates for people living with chronic pain and is a member of the Leaders Against Pain Coalition through the NFMCPA

The Daily Stuggles of 10 MIllion People

More than 10 million Americans are living with Fibromyalgia. These people are suffering physically, mentally, and socially. Many of whom have no idea where to turn for help. Some live in communities that still believe FM is just a term used to describe overweight hypochondriacs that don't want to work. But that is so far from the truth!

Many healthcare providers are changing their minds about FM. Why? Due to extensive research results, Fibromyalgia has been reclasified as a neurologic disorder instead of rheumatologic. This is huge! Since big pharma is still in a race to find the most effective treatment, universities are getting the money needed to do more research.


So, Is It Real?

The truth is, Fibromyalgia is real. It is an entity all its own. But, how do you get your doctor to listen to you? How do you get him to understand that you're not "just" depressed (as if that were a small thing). Does your doctor believe in Fibromyalgia? Is she capable of managing your FM care? Or will she refer you to a specialist? Will the specialist think you're crazy? Are you crazy?


How I Got Here

  • 2003 - Diagnosed with Fibromyalgia after several years of undiagnosed symptoms
  • 2003 - Started a support group for people living with Fibromyalgia
  • 2007 - Flare started that would last almost two years
  • 2007 - December, turned support group over to our local hospital
  • 2008 - Applied for permanent disability, with no end of relief in site, and appealed twice
  • 2008 - October, I become suicidal after a year of constant pain and many prescription drugs
  • 2008 - November and December, I spent 6 hours/day, 4 days/week in group therapy
  • 2009 - January, found a poly-clinic that started me on the road to a quality of life worth living
  • 2009 - February, I went back to work part-time, working my way up to 3/4 time, within a year
  • 2011 - I opened my new office, changing my business name to Living Better Therapeutics
  • 2012 - I won a scholarship to train with the Leaders Against Pain Coalition in D.C.
  • 2013 - Trained to teach the Stanford University, "Living A Healthy Life With Chronic Conditions" workshops. Later this year, I became the first Chronic Disease Self Management Program Coordinator for our local area on aging and disabled.
  • 2014 - Started writing as a new way to help those living with FM and support myself when I am no longer able to do bodywork
  • 2015 - September, became unable to continue doing bodywork due to back pain and told I need major surgery and several months off work to recover

FM is difficult to manage. I'm here to share what has worked for me.

Going Up or Down?

Even with all the knowledge I have about living with FM, I still live on the "all too well known" roller coaster of chronic pain. But I "Live Better" because I recognize the symptoms sooner. It's getting easier to say, "no". I'm able ask for, and accept, offers of help. And I know there will be an "up" time soon to follow whatever "down" time seems to be presenting itself.

Unfortunately, with FM, no matter how closely you follow any protocol, there will be times you feel you just don't have control. But I'm here to tell you, that control will come back to you and life will get easier. So, become familiar with the different resources I share in order to have the one you need at your fingertips when you most need it.

What Do You Think?

Of those listed, which is your MOST difficult hurdle?

See results

There's More Than One Way To Skin A Cat

When it comes to (allopathic, complimentary, or holistic) treatments, what works for me may not work for you; there is no right way to treat FM. Balancing several different types of therapies will give you the best chance at managing  the Fibromylgia
When it comes to (allopathic, complimentary, or holistic) treatments, what works for me may not work for you; there is no right way to treat FM. Balancing several different types of therapies will give you the best chance at managing the Fibromylgia | Source

How Does a Polyclinic Help?

I found a clinic that offered all my doctors under one roof, where they had on-going communication about my case, and worked together to come up with the best treatment plan for my particular situation. Here is a list of the doctors/therapist/treatments I received.

  • neurologist - sleep study that led to diagnosis of central apnea and narcolepcy
  • podiatrist - orthotics that helped my knee pain and plantar fasciitis
  • psychiatrist - managed medications and monitored overall care
  • psychologist - counseled me on ways to cope while living with chronic pain
  • physical therapist - worked on whatever was hurting at the time, without restriction to the one area of the body a doctor prescribed
  • occupational therapist - introduced me to TENS unit and how to use it effectively for different types of pain issues and taught me how to modify how I did things that caused me pain (like cleaning the bathtub by standing in it with a scrubby under my foot)

Fibromyalgia Public Service Announcement

https://youtube/5nBD4gFrzj0

Bring Clarity To Yourself - Then Take It To Your Doctor

What Makes Pain Worse
What Helps
How Often Do I Do This
What Makes Fatigue Worse
What Helps
How Often Do I Do This
cold, wet weather changes
warm baths
2 or 3 x/week
overdoing it on good days
taking naps daily from 2-4
daily
aerobic activity
walking or stretching
most mornings
interrupted sleep schedule
Yoga
3 x/week
standing or sitting long time
ice packs massage TENS unit
3 x/day
not sleeping well
eating a clean diet
rarely
Use this example to create your own chart, then fill in the blanks. Your doctor will appreciate you making the effort to figure out what symptoms bother you the most, what helps, and what makes it worse. Remember, while it's important to see the big

Don't Go Through It Alone

You don't have to understand what I am going through.  Just listen without judgement.
You don't have to understand what I am going through. Just listen without judgement.

Summing It All Up

As you can see there is nothing simple about living with FM. But when you educate yourself about the different ways to treat it, you finally start taking back control of your life.

Remember these points:

* FM is real * More than 10 million people live with it, so you are not crazy * Keep a journal * Share highs and lows with a loved one * Investigate treatment plans * Be open to holistic and alopathic options * Knowledge is power - never stop learning!

What Do YOU Know About Fibromyalgia?

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We can't have full knowledge all at once. We must start by believing; then afterwards we may be led on to master the evidence for ourselves.

— Thomas Acquinas

Public Service Announcement

© 2016 Lesley Neeley

In order to bring you the information that is most helpful, please share your thoughts. I'm open to criticism, but please be kind. I'm sharing knowledge from m

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