This past Sunday I attended the 4th Annual Midwest Pain Treatment Education Expo.

The first I heard about this event was this past May from my fellow advocate & friend Sara Willy. Sara is the MN/WI Ambassador for US Pain Foundation & the Vice President of the GGPAIN Foundation. I honestly did not know anything about Sara’s work with the GG Pain Foundation.

After surfing the web this is what I found ~

Gracie Gean is a chronic pain patient diagnosed with Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy, Occipital Neuralgia, Spinal Stenosis, Spondylosis, and Degenerative Disc Disease. She also discovered that she has Lyme Disease.

“Gracie Bagosy-Young is an International Chronic Pain Advocate. She is the owner of Gracie Gean Chronic Pain Advocacy & Consulting. Gracie hosts the Midwest Pain Treatment Education Expo, which is the largest in the US. She speaks on chronic pain Nationally.”

“The Expo was born out of Gracie’s frustration with the lack of resources available to patients in the Midwest.” “The goal of this event is to help you become better educated regarding treatments, how to utilize your voice with advocacy efforts and help you find local support.”

The first year the expo was held had 80 attendees. Now 4 years later, the event had 300 attendees and over 9,000 registered to stream live.

This year the Expo was held in Northbrook, Illinois (near Chicago) presented by OSKA Wellness.

I have had an opportunity to try a lot of different pain relief devices and by far have had the greatest success using the Oska Pulse. I was excited to find out that Oska Wellness folks were going to be at the expo. READ my review on Oska Pulse.

This years event included 7 speakers & 30 different vendors/booths. View a list of speakers, sponsors and vendors at GGChronicPainAdvocacy/Events.

The expo was amazing. It is always great to be surrounded by those who understand your struggles. I have been to events where it is very hard to get time to speak with the vendors or the speakers and that was not the case.

I had an opportunity to try Kangen Water® I was totally shocked to see what is in the bottle water that I drink and thought was a healthy choice.

I used the AVACEN 100.

Although I live in a state that has not approved medical cannabis I was happy to receive information offered through Illinois to share with my support group members.

I met an amazing Manual Therapist Azlaan from Advance Sports Therapy located in Naperville, Il. He was offering wet cupping sessions and I signed up. It was great. He took his time to explain what was going to happen and as it was happening. I felt so relaxed after having that partial session and recommend him to anyone.

Mary Biancalana, Owner and Director of Therapy for Chicago Center for Myofascial Pain (Relief) who I had heard give a prensentation at the TAP Chronic Pain Conference in Washington, D.C. was there educating the attendee’s on trigger point therapy.

We need more events like this to educate the pain community and give them a chance to meet qualified people in their community. Please check out the great work that Gracie is doing to help those of us living with chronic pain illnesses. Videos from the event will be posted over the next few weeks.
WWW.GGPAINFOUNDATION.ORG

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