What is Fibromyalgia? I live with FMS

wordleNote to Reader:  “I recently teamed up with American Recall Center after reading their article “What is Fibromyalgia? Living with FMS” and together we want to raise awareness about living with Fibromyalgia on a more personal level.” 

I have attached a link to their very informative post and below are my thoughts;

How many times have you heard “You have Fibromyalgia? Next we hear “My so & so has it”.  “They tried enter treatment here and it went away” or “They aren’t able to do anything”.

Very seldom are we asked “What is Fibromyalgia?” or “How can I help?” They have heard the commercials for medication used to treat Fibro and think that is all there is to it.

There is no known cure.

The treatments focus on relieving symptoms and improving quality of life.

What are the symptoms?

According to the American College of Rheumatology ~ “Fibromyalgia is a chronic health problem that causes pain all over the body and other symptoms. Other symptoms that patients most often have are; Tenderness to touch or pressure points affecting joints & muscles, Fatigue, Sleep problems(Waking up unrefreshed), Problems with memory or thinking clearly aka “Fibro Fog”. Some patients may also have; Depression or Anxiety, Migraines, TMJ, tension headaches, IBS, Irritable/over active bladder or Pelvic pain. 

Fibromyalgia symptoms and its related problems can vary in intensity, and will wax and wane over time.  Stress often worsens the symptoms.” 

Not only do we live with the Fibromyalgia symptoms, co-morbid and co-existing conditions daily but we experience Fibro flares which is a temporary increase in the number and/or intensity of symptoms.  Fibro Flares are caused by any one of various triggers such as; poor sleep, over exertion, illness/injury, weather changes, treatment changes, too much/too little physical activity, hormonal changes and traveling.

What does that mean to me?

It means that I have no idea each day when I wake up how I am going to feel.  In fact, I can honestly say I don’t know how I will feel hour by hour.

Each person’s level of pain, fatigue and brain fog is different and each of us have our own list of co-existing or co-morbid conditions. I never have a day or night pain free and I can’t remember what it feels like to be rested.

I have Fibromyalgia and 19 co-morbids.  If I were to rank the top 3 diseases/syndromes that affect my quality of life the most I would choose Fibromyalgia, Myofascial Pain Syndrome & Systemic exertion intolerance disease(formerly CFS).

What are some of the possible co-existing/co-morbids?

  • Lyme disease     Lupus    Osteoarthritis     Rhumatoid arthritis     Cushing’s syndrome     Hypothyroidism   Polymyalgia Rheumatica   Reflex sympathetic dystrophy syndrome  Cervical spinal stenosis     Irritable Bowel Syndrome     Osteoporosis     Endometriosis     Carpal Tunnel Syndrome  Sjogren’s syndrome     Crohn’s disease
  • Multiple Sclerosis     Raynaud’s Phenomenon  Chronic Fatigue  Syndrome  Anemia   Seasonal Affective Disorder     GERD Interstitial Cystitis     Yeast Infections    and MORE;

One of the problems having Fibromyalgia is understanding if the symptoms you are experiencing is Fibro related or if it is from one of the many co-existing & co-morbids you can have along with Fibro.

I began being diagnosed with some of the co-existing syndromes at 19. Although I remember experiencing some symptoms as early as 13.  I was very lucky that it took only a year for me to be diagnosed with Fibromyalgia once I began my true search for what was wrong with me?  Why was I always in pain? Why couldn’t I sleep? etc….

It has taken years or sometimes a life time living with Fibromyalgia before some patients have been properly diagnosed.  We still struggle with those Doctors who refuse to believe the facts and recognize Fibromyalgia as a diagnosis.

Imagine what it would do to you if you were in pain daily, not sleeping, experiencing migraines, jaw pain, severe light sensitivity, joint & muscles aching, skin feeling like it’s sunburned, depression, decrease in mental clarity and digestion problems. Now, Imagine being sent to a different Doctor for each of those symptoms, being diagnosed with something different each time you go to an appointment or having the physician tell you there is nothing wrong with you “it’s all in your head”.

It is a blessing and a curse when you finally hear the words “You have Fibromyalgia”.

Thank You! Someone finally believes you and it is real.  Once you start researching it the Ah-ha moments begin.  All of the symptoms you have been experiencing almost your entire life makes sense. It is so important to find credible sources. During my researching I found not only helpful books but wonderful friends. One book stays by my chair at all times and has helped me so many times. It is lovingly called “The Big Book” written by: Celeste Cooper, R.N. and Jeffrey Miller, Ph.D.Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain

Okay, So I have Fibromyalgia…. Now what?

Grieving and Acceptance are a very important part of living with Fibromyalgia.  Fibromites need to realize that their lives will not be the same as before.  However, they also need to know their life is not over. You can still be a productive member of society.  You may just need to change how you were doing it before.

We often need accommodations at work, home and while traveling.  These are a few of the things I have bought to help me get through the pain-filled, sleep-less day and nights;

Tempur-Ego mattress, memory foam pillow, light with sunlight bulb, ice packs,
Tens unit, heating pad(including one for car), dark glasses, anti-glare screen 
for computer, loose clothing, good shoes (no more high heel fun shoes),
 the best stadium chair and even a comfortable car.

I have described Fibromites as snowflakes.  No two are the same.  Just as it may have taken time, trial & error to be diagnosed it takes the same to find the treatment combination that works for you. Even then you may need to change it up now and again.

Some common treatments are;  Prescription Meds, Herbal supplements, Chiropractor,
Acupuncture, Acupressure, Massage, Mindfulness, Yoga, Walking,Water Therapy,
Pace Activities/Increase rest, Improve Nutrition, a Positive Support & Education.

It is important to create a good health team.  My health team includes a General Practitioner, Rheumatologist, Neurologist, Pain Doctor, Chiropractor, Acupuncturist with me as my own Health Advocate.

I have found the right combination of Prescription Medications, Alternative Therapies, Sleep, Exercise, Mindfulness and Support.

Does that mean I am pain free, rested and can live my life like before Fibromyalgia?  NO!

It means that I have accepted I will always have some level of pain, fatigue and “Fibro Fog” and whatever other side kicks decide to kick in.  I know that at any time I could hit a “Flare” caused by any one of the numerous variety of triggers.   I also know the “Flare” will go away and what I should do to help ease the Flare.

“Adversity is only an OBSTACLE if we fail to see OPPORTUNITY” ~ Celeste Cooper

I am a Fibro Warrior ~ Living LifeFeatured Image -- 2250

Now you know me ~ Now you don’t.

Do you feel like Two Face from the Dark Knight movie?two face

My Fibro Friends and I often talk about how we feel like we are two different people.

good dayOn one side is the person who is working, participating in our children’s lives and travelling to see family & friends.We either work outside the home or at home taking care of the house while raising our children or grandchildren. This is the person that we let the outside world see. They may know that we have Fibromyalgia or some of our other illnesses but we putbad day on a smile, a positive attitude and continue  living our lives.  We are wearing our mask.

On the other side (Exactly one day later) is the person who lives daily with the chronic pain, fatigue and depression.  The person who is crying on the inside and behind closed doors.  We fight daily to prove we can work or  to prove we are no longer able to work.

We often feel we have lost who we were and have become the disease.  Just like Two Face we have the 2 sides  at war with each other. We want people to understand how it feels to live life with Fibromyalgia and at the same time we do not want to be thought of as FIBROMYALGIA.

It takes a lot of work to look like you are someone not sick.  You have to force yourself to put on your makeup, do your hair, wear clothing that looks nice (not usually comfortable on your skin) and the hardest thing is to put on the face that hides the exhaustion and pain.

It isn’t just our appearance that has two sides but it is who we are inside and what we share with others.

I share different sides of myself with different people. I became unemployed 3 months ago and I am on the search of a new career.  I started out during interviews when asked why I left my previous job telling “my story”.  Now, I have started to just say that I want fewer hours and be closer to home.

I pride myself on being an Advocate.  I believe in education. It is the only way Fibromites will know what possible things to expect and treatment options and non-Fibromites to understand what we are going through.  When I get a job I feel like I will only be able to share most of my life with my new co-workers.

I sent a picture to one of my girlfriends yesterday to show her my new hair cut.  Earlier in the day I had told her that I was feeling blah.  When she received the picture she responded with “I like the hair cut but I can seen in your face that you are looking blah” I replied, “I didn’t put my mask on today”.  It was true.  I was feeling blah. I wasn’t in pain.  I was tired and feeling down.  She told me that I didn’t need to put on the mask for her – we are friends.  I thought about it.  I may not need to put my mask on for her but I need to put it on for myself.

I wrote everything that you just read a week ago.  It was announced last night on the news that Actor/Comedian Robin Williams had committed robin williamssuicide.  Today while the story unfolds I have been reading everyone’s posts and TV reports.  His family is asking that we not remember his Death but remember his Life.  I agree.

Everyone has their favorite Robin Williams characters.  I will always remember him first for Mork & Mindy. It was the era I grew up in.  Whether dramatic or comedic he was an amazing Actor. Watching the news clips you would see how when asked a serious question he would begin to answer and then go into some amazing unscripted bit. He put on his mask.

I saw the picture posted this summer on Facebook when he had stopped by the Dairy Queen in Lindstrom, Minnesota after a stay at the Hazelden Addiction Treatment Centre. He wasn’t wearing his mask. I could see it in his eyes – there was no sparkle.

Mr. Williams was diagnosed with bipolar disorder, depression and addiction.  He lived an amazing life, yet somehow that wasn’t enough for him. He was done fighting.

I read the stats on depression, fibromyalgia and suicide. I do not want to become one of the stats.  The battle isn’t easy.  Heck, life isn’t easy – add anything that will cause stress and it is going to be difficult to not become depressed.

Don’t wait until the darkness is closing in on you. Reach out and find a good support group.  Find a Friend, develop a calling chain, keep the National Suicide Prevention Lifeline (1-800-273-8255) near your phone.

Warriors, it takes more than your own strength to LIVE the lives we LIVE.

Reach out and be someone’s strength and they will be yours.

Why? Because we CHOOSE to be FIBRO WARRIORS ~ LIVING LIFE

for not just ourselves but our Family, Friends and Fellow Warriors.

The number for the National Suicide Prevention Lifeline is 1-800-273-TALK (8255) or  http://www.suicidepreventionlifeline.org/

 

robin williams 2