I spent fifteen (15) years with a neurologist for chronic headaches and radiating pain only to be “let go” to my primary care physician for pain management. There was nothing more he could do after trying every type of chronic pain control drug available. Some drugs had dangerous side-effects, especially the Triptyline family with vivid hallucinations of snakes, spiders and rats that I’ll blog another time.
Chronic heaviness in my legs as if they were concrete; chronic neck pain that ran down my back and between my shoulder blades up the top of my head, and half my face – I was told “that’s how you carry your stress”. Arms so heavy I could hardly move some days. Ceaseless exhaustion running on shear adrenaline and days that I thought I was actually dying. I vividly recall sitting at my kitchen table one night talking with a friend and saying “I think I’m dying”. Why else would I feel so drained? Like I had no blood, no air, just wasting away and this was BEFORE I had my first child, before I was ever pregnant!!
Life went on and at the age of 26 my first child was born and at age 30 my second. Two little boys, and a full time job singly and wholly supporting my family which included my son’s father and his first child. I was an idiot to carry the entire load, but that was self-punishment which is another day of blogging.
I tried every conventional and non-conventional doctor. Tens of thousands upon tens of thousands of dollars spent over the last 24 years. I’ve changed my diet, journaled weather patterns, eating patterns, eliminated dairy, wheat, refined sugar, taken supplements, cortisone, steriods, injections, surgeries. I was even tortured two years ago by an emergency room physician who withheld pain medication because I was a Fibromyalgia patient stigmatized to be a druggy. Even after he diagnosed Apendicitis with a CT scan 5 hours after arriving in the ER, I continued to receive a reduced amount of pain medication that of an ordinary patient with appendicitis should. I was admitted to the hospital by 12:30 a.m. while I waited another 10.5 hours until 11:00 the next morning because the surgeon wanted to get his sleep and figured I could wait. Needless to say my appendix was within a couple hours of perforating by the time I had the surgery. I was writing in pain twisting my sheets and sucked down the anesthetic desperate to be put out of my misery.
Bottom line, I denied I had this condition for nearly 20 years because of the stigma. I knew the medical profession didn’t believe it and guess what, even today, TODAY I received a message from a nurse that pointed out 90% of medical professionals still do not believe that Fibromyalgia is a REAL legitimate condition. Well what the hell is it then? Can anyone tell me?? NO not yet, but I bet you there will be a diagnosis linked to a bacteria or virus one day – you wait and see. It could be linked to all the chemicals that are in our food, vaccines we were subjected to as little kids, the GMO that has been done to all our seeds, the hormones and anti-biotics that have been injected into our livestock. One day it will be discovered. There are too many people now suffering from this debilitating condition!!!
A ray of support finally!! I have found some understanding in 1 clinic here in Portland, the Frida Center. I met my FM caregiver first at Oregon Health Science University where one (1) day a week is dedicated to FM patients. The clinic was full of men and women when I arrived. There I received empathy and understanding. No cures, no relief, but at least someone believed and was searching for answers!! Every one of us had a similar story. Working working working not relenting to how we actually felt. Embarassed to reveal to anyone that we were suffering. Thinking if we speak it that will make it true. Silent suffering as we went from one doctor to the next. Lots of tears that day by each of us. At least someone in the medical profession believed me and didn’t say I’m crazy. The Frida Center is founded by Dr Liptan who wrote the book Figuring Out Fibromyalgia: Current Science and the Most Effective Treatments. It is a great place to start if you are in the Portland area.
One of my frustrations however is I’ve attended support programs from Yoga to physical therapy and none of the professionals I’ve met leading these classes are Fibromyalgia patients themselves. They push beyond capacity, make us hold patterns that we pay for the rest of the day and sometimes takes several days to unwind the pain trigger. They don’t seem to understand fully our limitations, but as humans we want to live up to expectations, receive praise and not fail so we push ourselves and regret it later and then stop going to programs.
One of the reliefs of my FM is time with my horses. I cannot ride without “feeling” it for days and never am “in shape” since every ride costs me pain no matter how many times a day I ride or number of days in a week I ride. It’s like working out, but never getting in shape and feeling the pain of being out of shape every day. When I brought my horses home over ten years ago I was puzzled that I was always in pain for days after riding. I’d think ‘when am I ever going to be in shape?’ not realizing or admitting that my pain was FM. My doctors were always amazed at how great I looked and how in-shape I was that I was met with disbelief that I was suffering. Even to this day my primary physician, who I absolutely adore and goes to great lengths to support me, says “you’ll be hard pressed to ever get disability as you look too good, too healthy”. That’s a wonderful compliment, but any FM sufferer will tell you about the brick wall – I’ve hit it many many times, but like I said I have the best primary physician that gets me up and over the wall after tearful visits.
Back to the horses – I’m putting together the Equine Support Center for Fibromyalgia which is support in groups and individual, clinics and private time from just “being” with one of my horses simply hugging and crying or to grooming and petting. Understanding the limitations of FM, for instance, recognizing time on our feet is limited, our motion is limited or we’ll pay late so there is soft stretching, gentle touch, a little journeying in our Way of the Horse Journals, group sharing, private crying and lots and lots of support. Being an FM sufferer with horses who are now in their later years, it is time to change from training to sharing.
Let me know if you are in the Portland, Oregon area and would like to participate in an event or schedule private time. I will have a schedule of events on my website with a webpage dedicated to the Equine Support Center for Fibro. This is not a replacement for medical care, simply support that includes the loving embrace of sweet caring horses who are waiting for you to share your heart with them.