It took me a great deal of time to decide whether or not to add a page about Fibromyalgia. Well, here we are, and here we go...
WHO IS AFFECTED?
Approximately 5% of the world's population have had their lives forever changed by Fibromyalgia. Statistics show that an estimated 20/1000 people will develop Fibromyalgia in their lifetime. 85% of whom are women.
And although the cause for Fibromyalgia is unclear, the theory is that there is a dormant gene in some people, which becomes active when the person experiences a traumatic event. ie: Car Accident ~ Domestic Abuse ~ Rape ~ Gun Violence ~ Near Death Experience ~ PTSD ... Just to name a few.
Although Fibromyalgia itself is not believed to be hereditary, in some cases, if a parent has Fibromyalgia, children may develop MS or Lupus
WHAT IS FIBROMYALGIA?
Fibromyalgia is an autoimmune disease, in the same family as MS and Lupus. Causing chronic wide-spread pain. This illness attacks all systems, including the Central Nervous System, Respiratory System, Digestive System, Circulatory System. As you can well imagine, when a flare hits, the individual is pretty much rendered bed-ridden.
Because Fibromyalgia attacks the muscles, stress is not a friend to a person living with this illness. Stress causes tightening of the already compromised muscles, causing extreme and at times crippling pain.
Stress, therefore, is considered a trigger and should be avoided at all costs!
WHERE ARE SIDE EFFECTS FELT?
The side effects- or as I call them "linking illnesses" are vast and varied.
They include, but are not limited to:
Chronic Fatigue Syndrome ~ Chronic Soar Throat ~ Dizziness ~ Disequilibrium ~Paresthesia ~ Weight Gain ~ Depression ~ Fever ~ Cognitive Impairments ~ Anxiety ~ Vision Problems ~ Sensitivity ~ Urinary Problems ~ Mitral Valve Prolapse ~ Nausea ~ Sensation of Swelling ~ Acid Reflux ~ Inflammation ~ Headaches ~ Chest Pain ~ Irrital Bowel ~ T.M.J. ~ Widespread Pain ~ Fatigue ~ Sleep Disorder ~ Restless Leg Syndrome ~ Hair Loss ~ Stress ~ Decreased Sex Drive ~ Vomiting ~ Painful or Swollen Lymph Nodes ~ Shortness of Breath ~ Thyroid Inflammation ~ Difficulty Swallowing ~ Bruising Easily ~ Pulmonary Aspiration ~ Memory Loss (Fibro Fog) ~ Light Headedness ~ Hypoglycemia ~ Cardiomyopathy ~ Hot/Cold Intolerance ~ Photo-sensitivity ~ Sciatica ~ Tinnitis ~ Chills ~ Fainting ~ Sensitive Skin ~ Sensitive to Chemical Smells ~ Numbness in Limbs ~ Needling on Skin...
Because there is such an abundance of side effects and countless combinations. If you were to take 100 people inflicted with Fibromyalgia and put them into a room - you would discover that each person experiences it differently.
Aside from the side effects / linking illnesses, many people with Fibromyalgia will eventually also develop either MS or Lupus - or both. Approximately 75% of the people with FM have at least one of the other autoimmune diseases.
**MYTH** Although Fibromyalgia is also often accompanied by Rheumatoid or Osteo-Arthritis, Fibromyaliga is not a form of Arthritis.
WHEN DO FLARES OCCUR?
Flares occur .... well .... whenever they feel like it. After a period of time you learn how to work around them ... and where the fine line is that will send you tumbling right into a flare.
As mentioned above; Stress can cause a flare. Any tension, heavy lifting, and over-doing it. What does that mean? Sadly, it means different things to different people. If you walking limit is 30 minutes and you walk for 32 minutes ... those extra 2 minutes can send you spilling into a flare. It is really that fickle and really that simple!
This disease is really a learned process of survival. Once you figure out EXACTLY where your boundaries are ... and you ELIMINATE stress (and the people who cause you stress) from your life ... you can drastically decrease the flares you will have to endure.
Although this does not by any means promise you a pain-free existence.. it simply means that your pain threshold will strengthen and what was once a 5 on the pain scale - will become your new normal.
WHY ARE TENDERPOINTS IMPORTANT?
Because there is no blood test to diagnose Fibromyalgia - tenderpoints are used. There are 18 Tenderpoints throughout the body. When being examined, the Rheumatologist will apply pressure to each of the 18 tenderpoints, if 11 or more are active (in flare), in addition to experiencing 'side effects' ... for a three month period of time (or greater) ... and after having had other illnesses such as MS, Lupus, Lyme Disease, RA ruled out ... you will most probably be diagnosed with Fibromyalgia.
HOW IS FIBROMYALGIA TREATED?
As there currently is no cure for Fibromyalgia. Therefore you spend your lifetime chasing relief for the side effects and pain management. The truth of the matter is that there is no magic pill. No fix. You will be stuck in a revolving door of medications and supplements. Finding something that 'seems to make a difference' ... not a cure or fix ... but something that 'takes the edge off'. The truth is that it will only work for a period of time before your body becomes tolerant of the medication, and it loses its effects. You then spend months in a desperate hunt for your next period of relief.
Some will say Fibromyalgia is not progressive or degenerative. I say B.S!! It is slow. But ... I put it in this context. If a person with MS takes a plane across the country. And a person with Fibromyalgia takes a car across the country. They will both arrive at the same destination - eventually. One will just get there more quickly.
What does that mean? It means that someone with Fibromyalgia who once enjoyed walking and was reasonably active in life - will face the very real possibility that they may in fact end up in a wheelchair or scooter.
Fibromyalgia is not Terminal.
The truth of the matter is it is very difficult for me to even remember a time when I was not in pain.
In my childhood ... 1-12, I believe I was "normal". I was able to run, jump, play. I enjoyed skipping, hopscotch, jumpsies, riding my bike, doing triple jump at the track meets.
In my teens ... 13-19, is where I believe the the beginnings of a life with pain began for me. Of course, it was always discounted as "growing pains".
I attended Central Commerce in Grade 9. Transferring to Central Tech in Grade 10. I would walk the hour home nearly every day after school. Not because I couldn't take public transportation, but because indeed, I enjoyed walking. Loved it in fact. I walked everywhere!
But there were unexplained cramping. As far back as I can remember, I would be awoken by charlie horses ... which are muscular spasms. I must have had hundreds of them in my lifetime. Is that "normal"??
I would bruise extremely easily. To this day I will be in the shower, or dressing, and see a big black bruise - somewhere on my body - with zero clue as to how it got there.
In my late teens I was sexually abused - I was raped. I was in the midst of a domestic abusive relationship, which lasted 5 years (into my early 20's).
Throughout my life, I have had many operations ... from a simple tonsilectomy - to rupturing organs, and nearly "dying on the table".
In my early 20's I was held at gunpoint during an armed robbery.
Each of these events are traumatic in their own right. Grouped together ... can I truly be surprised that this gene was awakened ??
I suppose not.
Through the early to mid 90's the pains and twinges I had experienced the decade before had grown in intensity and frequency. I experienced bouts of depression, developed an anxiety disorder and found fatigue taking over my life. Everything made me tired.
"You are a new mother! It's normal!" Is what I was told. I suppose there was a teaspoon of truth to that. But being a new mother was not what was ailing me. It was not what was taking over my life in a slow - crippling way.
In 1999, after years of battling the 'side effects' ... and months of testing for MS, Lupus, Lyme Disease, RA, and a whole host of other diseases. I was ultimately diagnosed with Fibromyalgia.
My reaction? Relief!
Odd? Perhaps! However, after years of pain, fatigue, depression, and no answers to why I felt this way ... I FINALLY had an answer. I FINALLY had something to point at. I FINALLY had a name for what had taken over my life. So, in that ... relief was born. I was vindicated. And No! I was not crazy!
I remember that day clearly. I was so delighted, that I had neglected to ask - anything. After I arrived home from the doctor's office. I sat ... then I thought .... "What in the hell is Fibromyalgia?????" I began Google searches ... and spent days and weeks and months reading - anything and everything I could get my hands on.
I became somewhat of an expert on this disease. I was bound and determined that I would find a way to cure myself!! I would not surrender to this disease!!
Life is a funny thing. In spending so much time devoted to research, groups, blogs, more research .... bouncing around from one medication to another ... supplements ... vitamins ... chronic pain patches .... I didn't even realize that I had become the disease. I lived and breathed Fibromyaliga.
This realization came to me in May/2004.
At this point I was taking 19 pills/day - a combination of prescriptions and supplements. 11 of them first thing in the morning! I was wearing the fentynal based morphine patches, which were worn 24/7 and changed every three days.
I remember how my body began to shake as I changed the first patch. They took three days to "kick in". It was almost to the minute! As I put on the second patch ... my entire body began to shake - uncontrollably. As the drug coursed through my system. I hated the feeling. I was sickened by the strength of the drug. But it lessened the pain!
The day of my toxic crash, was a day I believed I would truly die. I developed an extremely high fever, began having seizures, convulsions, I felt myself slipping in and out of consciousness. I could distinctly hear opera music - where none was playing. I was having hallucination. In a moment of clarity I reached my right hand across my body as I lay upon the sweaty sheets on the bed, I tore the patch from my left arm, and passed out.
It was not until three days later before I could lift my head from the pillow without feeling the as though death had a grip on me.
I made the conscious decision to STOP all medications .... all supplements ... all herbs ... EVERYTHING.
Looking into the mirror ... I did not know what would happen for me next. My eyes looked upon the burn outlines on my arms where the patches once were. I knew this could not continue. I remember actually feeling angry.
I began to pray - daily - nightly. For strength. For healing.
I knew I could not go indefinitely without medications. That there were some of them I would need. But I would only agree to take what was absolutely necessary. And of course, as mentioned above, when you find a regime that works - that you actually feel some relief from. The time is really short lived.. You eventually become immune to them and they will no longer work. So, you then begin a search for a new set of meds, to switch over to. Currently, I have my regime whittled down to the bare minimum for me to function. And I have two sets, which are alternated when one ceases to work ... I switch to the other for a few months - or years ... until they cease to be effective .... then I switch back to the first set.
This system seems to work (kinda/sorta). For me. For now.
MY NEW NORMAL
As little as two years ago, I was unable to walk for more than 10 minutes. A life in a wheelchair was becoming more and more of a certainty for me. It had been nearly 15 years since I had been on public transit. Not because I was unable to be on a bus ... but if the bus was crowded - I could not stand. Stairs had become extremely difficult for me to climb. My equilibrium had become so bad that I was forever breaking my toes. From sheer loss of balance ... 'Who put that wall there?!?!" I was left with no alternative than to taxi everywhere I went. Of course, I could not afford to do this .... and so, my social life became nearly non-existent.
During this time, my daughter had now reached adolescence. Not a fun or easy time on the best of days. She was the everyday-teenager and gave me a run for my money! Unfortunately, my stamina was not that of a "normal" person. And little things would send me into a flare.
Let me be clear.
I AM IN NO WAY LAYING FAULT AT THE FEET OF MY DAUGHTER.
I am merely stating the facts. As a single - disabled - mother of a teenager. Life was not easy.
In September of 2006 I rescued a German Shepherd / Chocolate Lab Cross named Bentley. He was 2 1/2 years old at that time. Abandoned on a field in Acton, Ontario. My new plan was that if I had a dog, I would be forced to increase the strength in my legs .... slowly .... hopefully .... make a come back.
For the first four years I slowly began to walk Bentley .... 5 or 10 minute potty walks. I did have the luxury to take my time and not push myself into a flare, as my daughter was still at home and when I only needed to take him out for 2 of his 4 trips out per day.
Very slowly I could feel strength coming back. And in between flares, broken toes, and my bout with cancer ... I could feel little improvements.
2010 My daughter was 20 years old and felt it was time for her to spread her wings and build her own nest. I was now going to be walking Bentley on my own! I changed his schedule to 3 times a day. Morning, Afternoon and Before bedtime.
I have to say that today I feel much stronger. I am nowhere where I was when I was in my teens. I probably never will be again. BUT I am light years ahead of where I was ... as little as two years ago!
On "Good days", Bentley and I can go for walks up to 45 minutes! I can now do a 2 hour grocery trip!
The truth of the matter is that unless and until a cure is found for Fibromyalgia, I will probably never have my full strength back. I will probably never have my old life back. What I do have are choices. I can choose to understand this disease and work around it. Knowing that I can have a life that is worth living. I can do what is within my own personal limits and not feel as though I need to apologize for being sick.
I know that I can slowly build the strength in my legs... I can slowly build my endurance. I can get done what has to be done.
I can accept that I will have "Good days" and "Bad days" ... and I can continue to work within the Good ones. And Accept that the "Bad days" mean I need to take a time out.
My journey with Fibromyalgia has been long ... I am now nearly 44 years old .... I have had extreme highs ... and extreme lows. Life has not been easy. But it has been mine.
Three things I know for sure:
~ I have fibromyalgia - fibromyalgia does not have me.
~ I am no less of a person because I am living with an illness. And my life is no less valuable.
~ People like to say that I rescued Bentley ... the truth is that Bentley rescued me.