My Fibromyalgia Roller Coaster

I recently started a daily journal that chronicles My Daily Life with Fibromyalgia and my attempt to find something inspirational for me to keep my spirits up and to help me express how things are really going for me more clearly for my family members, friends, and doctors.  

I’ve been gathering information on Fibromyalgia for years and hope to start up my own website with helpful facts and tips for Fibromyalgia sometime this year.  

When I started this journal, my husband suggested I do a blog specifically about my trials, tribulations, and successes.  So, I guess I’m going to try to do a Blog.  What is this blog about?  Uhmm

·         About me

·         About my family

·         About my daily activities

·          About my life with Fibromyalgia

I’m not really sure who would want to read this online, but I hope other people with Fibromyalgia will be interested.  The website I am working on will have tons of great information, articles and more, but what I do daily seems a little boring to me.  However, if this helps even one person and gives other people a comparison of another person’s journey with the pain, the fog, the exhaustion, and the frustration that is Fibromyalgia, then it is worth doing.

I just pulled through a major flare up that lasted for months.  The pain is still bad, but I’m beginning to function as a fairly normal person a little bit more again.  I do worry about starting a blog on this, because I WILL have days sometimes weeks when I am unable to post anything.  However, I am hopeful that, like my current Fibro Friends, my new internet Fibro Friends will understand.

Depending on how bad the horrible mental fogginess is on any given day or how high my pain levels are, I may write something that makes absolutely no sense or write in circles or completely miss a day or two.  Please recognize that these are all part of the journey.

I’m not even sure where to start.  I guess I’ll start at the beginning of Fibromyalgia, because although I remember the life I had before it, my pre-Fibromyalgia life often seems like a hazy dream.  I am often reminded of something that I could once do that is difficult or impossible now, but it no longer seems even remotely possible to do most of the things I used to do.

My Fibromyalgia themed roller coaster ride started twelve years ago, I was in a car accident. My car was totaled, but I was relatively unharmed. I had no broken bones, no cuts or bruises or other outward damage to my body.   But I was in extreme pain. I was diagnosed with whiplash, which made sense.   After a few weeks, I started doing physical therapy three times a week.  I also underwent X-rays, MRI’s, blood tests and more. After a year, the pain was still affecting my life so I started chiropractic, visited a rheumatologist and more.  Two years later I still had no answers as to why I was in so much pain, but the pain medications kept going up in strength.  Then I had to see another doctor in the clinic who said I wasn’t really in pain and was addicted to the pain medication.  Really?  

Then another doctor in the same clinic said that I probably never had pain from the accident, but was only after the medication.  I had never taken any medication prior to the car accident other than antibiotics twice in my life and the occasional aspirin.   I was taking exactly what the doctor told me to.  It wasn’t working very well. But I was at least able to chase after my daughter and work.   They took me off all of the pain medication and Flexeril, within days I couldn’t walk without help.  When I went back in, they didn’t say anything helpful and didn't offer anything to help with the pain. 

I left that clinic thinking I was flat out crazy.   After a few weeks I lost my job, because I couldn’t do anything. I knew I had to get help. So I went to a different doctor in a different clinic.  My new doctor went over all of the previous tests, ran a few more tests, and then did a “trigger point” test. 

I was diagnosed with Fibromyalgia.  When I was first diagnosed, I tried to find information about it and what I could do, but there was very little information available and much like today there were no cures.  The rollercoaster was just beginning to move, but to be honest I had no idea what direction it was going in or how many dips and twists I would be going through.

My new doctor had multiple patients with Fibromyalgia and was constantly looking for new treatments.  He had a holistic approach to medicine, meaning that he felt that things like exercises, chiropractic, acupuncture, diet, meditation, and medication are all tools to combat the side effects of Fibromyalgia.  

Fibromyalgia: Never-ending Meds and Money Spent
Image From: http://www.freedigitalphotos.net

At this point, I have tried pretty much every type of medication including anti-depressants, anti seizure meds, muscle relaxants, pain relievers.  If you think of a medicine used to treat Fibromyalgia, I have probably taken it at some point. 

Then, the pain increased specifically in my neck. I couldn’t move it, lay on it, anything without sobbing in pain.   When the newest round of tests was done with, a specialist found a severely herniated disk in my neck. It required surgery (spinal fusion).  The neurosurgeon required me to stop taking all medications for the two weeks prior to surgery. I did it and I couldn’t open doors, walk without help, move without crying, speak intelligibly, or anything else. After the surgery I started getting better.  I had to ease back into some of the medications. 

Then after four years of actual help from my doctor, he died.  Too afraid to see another doctor, I went for years without anything but herbal supplements, mild exercise, over the counter pain relief and the occasional acupuncture and chiropractic appointment.  I was unable to hold down a job and try to maintain the household and raise the kids all at the same time, so I tried working from home and later stopped working all together.  I learned a lot from this time period.  Many of the things that I did during this time I still do, because it works for me.

Currently, I am still struggling with pain and still struggling at times to trust my latest doctor. What I have learned from the years of dealing with Fibromyalgia is that the rollercoaster keeps moving and as it moves the treatments change, stop working, or cause severe enough side effects that they need to be stopped.  Then a new treatment regimen begins that may or may not work and if it does work, probably will not be a permanent fix.

Despite, the ups and downs, I am reaching a point of acceptance and learning to focus on the positives in my life.  Ultimately, I now try to focus on the things I "CAN" do and not the things I can't.  I over do things frequently, but have learned to slow down, not beat myself up over the things that don't get down, relax, and enjoy the parts of my new more limited life.

I hope you enjoy this blog. If you see a bit of yourself in my life or find yourself inspired or merely interested in a post, please comment.  I really want to connect with other people impacted by Fibromyalgia.