Sunday, October 14, 2012

My Life with Fibromyalgia - Part Three

This is my story and is in no way intended to diagnose, treat or advise anyone on fibromyalgia or any other medical disorder, only a qualified health professional can do that. 

Part Three

My Dr and I talked over what she knew of Fibromyalgia. She admitted that there was still little known about what causes it as well as agreeing to work with me to find treatment options and we agreed that getting the pain under control should be first so I could have some semblance of a ‘normal’ life.

The one thing she was quite adamant about, and had been during the months of tests, was to keep all negativity at bay and eliminate, or limit contact with, the negative people in my life. As harsh (and darn-near impossible!) as it sounded at the time it proved to be the best, most invaluable advice she could have given. And here’s where I feel it important to say that my husband had been saying this for many years but realizing it was actually contributing to my illness was the wake-up call I needed.

I agreed to work on this, as well as taking Cymbalta at her suggestion. Now, normally I don’t agree with taking medication of any kind unless it’s absolutely necessary, nor would I recommend medication for everyone with or without Fibro, but for me the choice to take it made such a huge difference within a few days I couldn’t regret that decision.

It further helped to have a Pharmacist knowledgeable about Fibromyalgia and Cymbalta, who’d been told by other Fibro patients that it (Cymbalta) gave them more energy, and following her suggestion, I started off by taking it first thing in the morning so that if the same was true for me, it wouldn’t aggravate my insomnia.

Their combined advice was invaluable for not only did I have less fatigue, but it improved my pain level within a couple of weeks, mainly due in my honest opinion to finally getting good, quality sleep. Over time I was actually able to go to a movie theatre and stay awake to watch the movie! Imagine that!

I’ll never forget the excitement I felt the first morning I woke up after having a bad dream. As crazy as ‘excitement’ and ‘bad dream’ in the same sentence may sound, it had been months since I’d dreamt (or could remember my dreams) so even a bad one was improvement.

My photographic memory was slowly coming back, my pain tolerance level was increasing and the depression that I hadn’t realized was there had started to lift. I was now able to understand better the mourning process I had been going through. The loss of who I once was and what I could no longer do or be, mixed with the fear of what this could/would lead to at the rate I was going, played like a recurring tape in the back of my mind.

Waking each morning still in body-wide pain, my lack of regular memory and impaired word recollection worried me, as did the episodes of Sensory Overload (bright lights and colours, smells and sounds all happening at once causing a hard to breathe, almost panic-like anxiety, dizziness/vertigo, and pale - too hot or cold - clammy skin). Though research assured me it was common for Fibromyalgia patients to go through this, it was way beyond my comfort zone.

Dinner out for my husband (God bless his patience, help and understanding) and I, as with most family events, had become a challenge to find the right time, location and surroundings to best reduce the severity and/or frequency of the episodes.

At my next consultation with my Dr she recommended I do puzzles and other things that would retrain my brain and possibly improve my memory, which did help, and for the rest for me to wait and see if the medication would be of further help before trying anything else.

Shortly after that appointment we were given the news that she was going to relocate to a new office three hours away. Back to square one we went. Who knew whether the new Dr replacing her would be as good or how long she’d be here before she would relocate as the last two have.

I had to find a Dr who could answer my questions, who understood Fibromyalgia. To the internet I went again to look on Fibromyalgia forums to find possible links to Dr’s in our area who could deal with Fibromyalgia.

To be Continued... 

Thursday, October 11, 2012

My Life with Fibromyalgia - Part Two

This is my story and is in no way intended to diagnose, treat or advise anyone on Fibromyalgia or any other medical disorder, only a qualified health professional can do that. 

Part Two

I can’t tell you what a relief it was to finally have a Dr who heard me, to have really listened and not be rushing me out the door before I’d even sat down. She asked questions, actually examined me and when she couldn’t explain what was happening, sent me for what turned out to be months of tests.

From spinal x-rays and a referral to an Orthopedic Surgeon to rule in/out if my osteoarthritis was a contributing factor, an EMG/Nerve Conduction Study to check for nerve or muscle damage, an overnight sleep study to figure out why the insomnia, blood work and more blood work, Ultrasounds and a referral to an Ear, Nose and Throat Dr looking for signs of thyroiditis, nodules, etc, a holter monitor test to test my heart function, to a referral to a Menopause Clinic/Gynecologist (an appointment set for this November) in case any or all of this was ‘just menopause’ (which wasn’t likely in her opinion), she was leaving no stone unturned.

I was not mentally prepared for the frustration that set in as many test results and Specialist reports came in finding either nothing wrong or what they did find could in no way explain the body wide pain and/or symptoms I had. I’m sure others who have been through, or are going through this, can imagine how ready I was to give up as I sat there and heard the results. Luckily my new Dr recognized this and asked me to please bear with her, that there were more tests/Specialists available but we had to go one step at a time to get to the bottom of it.

I was frustrated, felt dejected even after her pep talk, spent a few hours feeling sorry for myself with all the tears that entails. The next morning I woke up in more pain, more exhausted than I had been in months and finally the anger and determination set in. I wasn’t going to live like this. I was taking responsibility for my own health back and the next step for me was to start researching on the internet.

After typing a sequence of words, symptoms, that shouldn’t have made any sense to a search engine, I was very surprised when it many links lead to pages on Fibromyalgia, links I will admit I ignored at first. Not because I didn’t believe there was such a thing but because having a friend with Fibromyalgia I in no way wanted any part of it.

Researching other links that didn’t seem to fit the array of symptoms, I bit the bullet and started reading the pages on Fibromyalgia and a light bulb went off. My cognitive dysfunction, gastrointestinal disturbance, hormonal upheaval, increased allergies, sleep disturbance, weight gain and whole body pain were all there in black and white.

Knowing in my heart of hearts that this was what was happening, I booked an appointment with my Dr. I walked in armed with pages of information I printed off, including a tender point exam, which she read through with me, and then did a tender point exam. 

I felt oddly comforted for a short time hearing her say yes, I had Fibromyalgia, all with finding I had eighteen out of eighteen tender points.

Strange really how something that affects so many bodily functions is diagnosed with a tender point exam in mainstream medical practice. For those of you who haven’t been through a tender point exam, let me explain.

There are eighteen points on our body that, if pressed hard enough, will produce pain or tenderness for most everyone with or without Fibromyalgia, but for someone with Fibromyalgia the gentlest pressure on these points can cause excruciating pain.

To be continued...