Monday, April 20, 2009

Is Fibromyalgia Real?

FIBROMYALGIA is a chronic pain disorder characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle, and hands, but any body part can be affected. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time.

Not too long ago I would possibly have rolled my eyes, like so many others do, at the mention of "fibromyalgia". Not so anymore.

It is such a generic term to cover a multitude of problems that you begin to wonder if it isn't the new "virus". You know, the term the doctors use when they don't really know what's wrong with you.

I am living proof that this "disease", if you will, does exist. There is no cure and each case varies, so it is hard to pin down. Diagnosis can be difficult and could take years and several doctors later before you get any real help.

HERE is my story. Maybe it will help others who experience similar symptoms.

Approximately 10 years ago I started getting pain in my lower back and neck whenever I would sit for long periods, especially if I were sitting on a hard surface. It seemed to worsen over time to the point I would walk out of a restaurant if they did not have a booth. My traveling revolved around how much sitting was required (so anything international was out of the question). I was sick and tired of being sick and tired.

I started seeing a chiropractor 2 to 3 times a week at first, and the pain seemed to lessen so I was down to monthly visits. I was initially told that my spine was out of alignment, and even had x-rays to prove it, so there was no reason to look any further. However, the pain would always return and I would find myself spending a lot of time and money on adjustments and massages. This went on for nearly 10 years. I even had an MRI at one point as I was certain something serious was going on.

Eventually I began to recognize that stress also played a part in the degree and duration of the pain and that it would come about whether I sat for a long period of time or not. My entire body was aching most of the time and everything I did caused problems. Almost like the task done didn't warrant the pain felt. Every morning I would wake up feeling like a truck ran over me. I told my doctor that the pain I was experiencing was similar to what you might feel when you suddenly went on an exercise kick and overdid it. Only I wasn't doing anything out of the ordinary.

When my mom was diagnosed with ovarian cancer, and she was in her final 6 months, my stress was at an all time high as I already had too many years of difficult children. It seemed like just about anything would set it off: pruning my bushes; washing my car; even vacuuming.

Finally I found an internist who understood me and explained about fibromyalgia and sent me to a rheumatologist

Apparently, there are "hotspots" in various places on your body, and when pressure is applied, it causes a jolt of pain. Other than taking down some of my symptoms this was the only test the rheumatologist performed to determine, I did indeed, have fibromyalgia. From what I understand it is the only similarity in patients. Every case is different and degrees of pain vary. Up until that moment I would have argued with anyone that I did not have this malady as the few people I knew who did have it experienced a completely different set of symptoms and were in much worse shape.

The rheumatologist immediately sent me to physical therapy where I learned how to stretch my muscles to get maximum relief. I began to finally understand what was happening with my body and I am much better. I still take pain pills everyday but I haven't seen a chiropractor in nearly 2 years. When the pain gets out of control I get a massage or take it easy, but my life is not hampered nearly as much anymore and the fear is gone. I finally have some understanding of what is happening.

If you know there is something wrong with you and your pain is unexplained and your doctor doesn't seem to be helping you, I encourage you to seek a rheumatologist. Don't give up. Don't let anyone tell you it is all in your head.

I just wish I would have known this information when my mom was alive, as I am certain she also had fibromyalgia and didn't know it.

4 comments:

Twin Brooks Mosaics said...
This comment has been removed by the author.
Twin Brooks Mosaics said...

Sorry I deleted my first comment. I had a big typo to fix.

Very informative and well written. I'm sure there are many people out there who suffer from fibromyalgia and don't know the cause of their pain. Thank you for sharing your story.

myeuropeantouch said...

Christine, this was very informative and enlightening. I may go that rute just to make sure, as I was recently put on Lyrica.
Thanks for sharing...

StephanieK said...

Great post, and I know just how you feel. My mom was diagnosed with Fibro years ago (along with a million other wrong diagnoses along the way) but finally finally she found out the root problem--Lyme disease. Lyme is one that manifests itself in a lot of different ways and looks like a lot of other diseases. Nearly all Lymies get diagnosed with Fibro, Lupus, MS, and other 'mystery' illnesses before finally its found out they have Lyme. Its thought that most of the people who have Fibro, ALS, Parkinson's etc actually have Lyme. It's really much more common that is generally known. I would highly recommend finding a Lyme-Literate doctor (LLMD) to test you because your symptoms are exactly like mine and my mom's! Sorry I'm nearly writing a novel here, but I feel its very important to get the word out. Most docs don't know diddly squat about Lyme but if you get a LLMD he can tell you for certain. Best wishes and feel better!

Steph