Company’s calling – a journey with fibromyalgia
February 11, 2008 by Marijke Durning, RN
Filed under Diseases & Conditions
Added April 21, 2008: Tricia passed away today. I’m still in shock and disbelief.
Read here for more on Tricia’s very untimely passing.
This week, Tricia Olson-Giles, a photographer in West Tennessee, discusses her journey with fibromyalgia.
Can you tell me about when you first started experiencing the pain and what kind of pain it was?
The chronic pain/activation of the fibromyalgia came after a serious head-on car collision, with both vehicles at about 45-50 mph. I was in a compact car, hit by a full-size truck that crossed a grass median. This is approximately 5-6 years ago. My life hasn’t been the same since and the worst of the pain still continues to be in my back, though the thoracic spine, which is usually the most stable area of the back because of the ribs. At its worst as even the skin burns, I can’t stand the touch of fabric brushing on my skin. There are days a bra strap is too painful
Did you seek help right away?
Other than the emergency room stay after being transported via ambulance, I didn’t seek treatment for a while. I assumed things were just healing. I’m not exactly sure how long it took before I worked with internists on the pain, then I eventually received a referral to a pain management clinic, where I remained a patient for several years. I’ve had a combination of medication, exercise, physical therapy, nerve blocks, denervations even, trigger point injections, etc.
What did the doctors tell you when you did seek help?
It depended on the doctor. Some believed me and genuinely wanted to help, while others gave me the typical, med-seeking attitude. It’s frustrating, and humiliating to be accused of that, when you hurt so bad it keeps you awake at night, and keeps you from being able to sit still (literally) at a desk job.
What have you tried to help you with your pain?
All of the above, plus accupuncture, Thai Chi, Yoga, hydrotherapy, homepathics, heat/cold therapy.
Can you tell me a bit about what worked and what didn’t?
The only thing that honestly works are opiates, right now that is Opana ER at 30-40mg. It’s a 12-hour extended relief hydro-morphone. Heat and cold CAN help at times, as have some of the injections at times. Nothing works consistently.
How does having this pain affect you in terms of how you live your life?
I had to completely rethink my life, and it was a huge factor in my decision to go to work for myself and contract with another photographer. I know I am unable to hold down a regular 9-5 job without missing too much work. It limits the physical recreational activities I can do. I don’t even know if I’m still able to ride a horse anymore, and dressage was my passion before college.
If you were to look back over what you have tried/haven’t tried, would you change anything?
I don’t think there’s anything I personally could control/change. Doctors and other health practitioners either believe you and want to help or they don’t.
What would you say to someone in a similar situation who is just starting to try to find treatment and relief?
Don’t give up, and find a pain specialist who prefers to start with a conservative approach, i.e. injections, blocks, etc. before stronger medications. Also don’t be afraid to try Eastern medicine.
Thanks Tricia – many people have fibromylagia and I think it helps for them to realize that they are not alone.
Marijke,
Thank you for giving me the opportunity to share my story. I am happy to offer support to others with fibromyalgia or to answer reader’s questions.
Trish
Nice write-up, easy to understand the problem and relate to the issues. I learned a lot about issues that are not evident at first glance.
thanks Denis – that is exactly what I hope to do with Company’s calling features. I’m glad that this helped.
Marijke
I have read that there’s a drug that can be beneficial for fibromyalgia which is also used for Parkinson’s. pramipexole. Google it and you’ll find some interesting studies. Many have said it works for them. Here’s an excerpt from one:
Compared with patients receiving placebo, those receiving pramipexole had gradual and more significant improvements in pain, fatigue, function, and global status. At 14 weeks, the VAS pain score decreased by 36% in the pramipexole group and by 9% in the placebo group (treatment difference, -1.77 cm). Decrease in pain by at least 50% occurred in 42% of patients receiving pramipexole and in 14% of those receiving placebo.
Thanks John. Providing information like this is a big help to everyone.
I have been officially diagnosed with Fibro, along with a IBS, and Painful Bladder Syndrome, although I’ve been dealing with all three for many years.
What’s frustrating for me is to “look normal and healthy and fine” on the outside, and not be able to explain adequately how I feel on the inside. When every muscle and fibre is screaming in pain, but you still have to get thru the business of living each day…it takes it’s toll.
I have started on Lyrica for the Fibro and it seems to be helping a bit, after a month. My doctor and I play with the dosage on a regular basis, and I’m learning to live with the side effects (for me, weight gain, dizziness and blurry vision). Combined with pain medications, gentle exercise, massage, rest and flexibility with my schedule, I’m keeping the upper hand.
It IS nice to know there are others out there going thru the same thing. I tried joining a few support groups, but perhaps haven’t found the right one…I’m not interested in being part of a pity party, which is what most of them turned out to be.
I have been dealing with pain issues for a number of years (including internal scar tissue from multiple surgeries), and I’m determined not to give in. Thanks for letting us know we’re not alone.