Living With Fibromyalgia: Memoirs — A True Fibromyalgia Story

Living With Fibromyalgia: Memoirs — A True Fibromyalgia Story

fibromyalgia_journey_coverAfter publishing the first novel about fibromyalgia written by someone with fibromyalgia, Parleys Quest, I have been asked if the story in the novel is based on my life. In response to that question I published Living With Fibromyalgia: Memoirs — A True Fibromyalgia Story which is a biography of my life as it relates to fibromyalgia. Parleys Quest is a fictional story written by someone who really understands first hand the uniqueness of the illness. Living with Fibromyalgia is a detailed memoir of my personal experiences with the illness. I hope those who read it can find some validation and inspiration from reading a different perspective about someone else’s story of the dreaded disease.

This memoir is my story of a long and painful battle to find out what was wrong with me and the initial challenge of being diagnosed with fibromyalgia with out any treatment. There was a long hard battle to get treatment and help with the chronic pain and the other fibro symptoms. It also tells through several other articles how I coped with the illness up to the present time.

The First Novel About Fibromyalgia

The First Novel About Fibromyalgia

I’m back! I’m sorry for the long delay in keeping this blog up. For nearly two years I have been working on a novel. I got to a point where trying to keep the blog going and finishing the book was too much for me given the fact that I suffer from fibromyalgia. I will tell you all much more about my novel in the coming weeks. I’ll say this much.  The novel is a story where the protagonist is eventually diagnosed with fibro. It is called Parleys Quest and can be purchased from Parleys Quest.
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This work of fiction is the first novel that deals specifically with fibromyalgia. There have been novels, various stories and even some movies that deal with chronic pain of one type or another, but to the best of my knowledge, until Parleys Quest, there has not been any stories dealing with the challenges of fibromyalgia. This is significant to the millions of people worldwide diagnosed with fibromyalgia.
I’m glad to be back and I will now start keeping the blog active.

Unintended Consequences Of Chronic Pain And Fibromyalgia

Unintended Consequences Of Chronic Pain And Fibromyalgia

 

I’m an adult with an ear ache. Well, actually I’m a man bordering on old age and it’s not an ear ache, but it’s earaches, one in each ear. My throat starts to hurt along with a three day headache that will not go away so I go to the doctor. I’m not proud, in fact, I’m quick to go to the doctor when it comes to relieving  any type of pain.
With fibromyalgia I am sick of the pain. If I can relieve some type of minor or regional pain, I’ll do what I can. So the doctor agrees, I am sick. I get ten days worth of antibiotics. I get some cough syrup, cough syrup without narcotics. I already have a prescription for that. Yeah. I’ve been through many a sinus infection and many an upper respiratory illnesses, both viral and bacterial. I know that if I respond favorably within two to three days, it’s likely bacterial and I’m on track. Otherwise, it’s viral and I have to wait it out. It’s sad that I know this much.
I’m taking my medication regularly for three or four days and I’m responding well. Then all of the sudden I seem to be backsliding. Not good. So the question is why? I don’t want to be sick. I don’t want to expose my grandchildren to whatever I have. Being sick on top of chronic pain and fibromyalgia is just miserable. It’s worse than miserable, but unless you have a chronic illness or a chronic pain, you likely wouldn’t understand. So then, the question is why am I backsliding. Why are my symptoms getting worse and not better like they were a few days ago?
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It takes longer to figure out since my memory is foggy and my deductive reasoning skills are reduced by fibro fog but I do figure it out. I take too much medicine. Too many pills. I guess that’s a matter of opinion. I don’t technically take too many pills because every medicine I take is prescribed, even the Calcium, Vitamin C and other supplements.
You see, the problem is that my memory, motor skills are kicking in when I take my morning medicine and my night time medicine. I look at the bottles, sometimes skipping the labels because after six, eight or twelve years of taking the same medicine daily, I know what the bottle looks like. I know what the pill looks like. I have made several phone calls over the years to the pharmacy to ask why the shape or color of the pills in a particular pill bottle are different. They look it up and say that for that particular bottle, it came from a different manufacturer this one time or that they changed the shape of the tablet or the pill is a different color because it is now generic.
I think to myself, when was the last time I took my antibiotics? Now that I’m thinking about it, I start to wonder when I last took that two color capsule. I go through my pills, sorting them by morning and night time schedules. There’s a slightly translucent white pill bottle remaining along with an old bottle of Meclizine that I need to dispose of. The white bottle turns out to be my antibiotic. Crap! I realize that I have been on autopilot for so long that I passed over that antibiotic bottle the last few days. I haven’t been taking my new pill.
What’s done is done and I need to move on. I have changed the way I manage that pill. I have been taking it properly now and the symptoms are again improving. I now place the antibiotic next to my pain medicine that I take throughout the day. That reminds me to take it morning and evening.
After dwelling on this strange circumstance, I realize that among the many unintended consequences of medicating and treating fibromyalgia and chronic pain is that sometimes other temporary medicines get lost in the shuffle making it harder to deal with what most people would consider normal medical issues like the occasional sinus infection or ear aches or whatever. After twelve official years diagnosed with fibromyalgia I am still learning about how to live with this chaotic illness. Yeah.

Fibromyalgia Is Like A Box Of Chocolates

Fibromyalgia Is Like A Box Of Chocolates

Borrowing a famous line from the greatest movie Forrest Gump, “my momma always said, life was like a box of chocolate, you never know what you’re going to get.”
If you have fibromyalgia, you know that like a box of chocolate, you never know with fibromyalgia what you’re going to get. Of course, we all know that with fibromyalgia comes chronic widespread pain, we know that it is a Central Nervous System disorder and we know that at the present time, there is no known cure. But that is where the certainties of fibromyalgia stop.
The symptoms of fibromyalgia are vast and by some counts include over seventy symptoms. If you are recently diagnosed with fibromyalgia you are in for a long ride to discover what other symptoms you’re going to have. Once you find a way to manage the chronic pain you might notice, many more issues that are common with fibro like insomnia, fibro fog and many more.
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With a nice big box of assorted chocolates you get a nice assortment to experience. At least you have a choice, do I buy this box of chocolates or not? You don’t have a choice with Fibromyalgia.
I made my own box of assorted chocolate to illustrate a point. That’s the beauty of assorted chocolates now days. They have web sites where you can customize what you want inn a box of chocolates, but there is no choice which fibro symptoms you get. You can’t customize your symptoms on a web site. Even if you could, what would you want to select?
Whereas with a box of chocolate, you might get a Milk Chocolate Almond, with fibro you might get depressed. You could get a Milk Butter Cream, or with fibro you might get fibro fog. If you’re lucky you could get a Milk Walnut but with fibromyalgia you could get fatigue. The Milk Pecan Bud is nice, but with your box of fibromyalgia you get may get Fibrocystic breasts.
For me no box of assorted chocolates would be complete without some dark chocolate like a Dark Almond. With fibromyalgia you might get chronic hip pain, I hate that one, probably the most.  Dark Walnut is nice, but Foot Stiffness or Foot Pain is terrible. I love Dark Peanut but I hate the headaches and sleep disorders. I like Raspberry Truffles, they’re very rich, but one in a box is good.  Muscle  Twitches and Spasms are bad and I hate them both.
What’s ironic using this interesting comparison about fibromyalgia and boxes of assorted chocolates is that another symptom of fibromyalgia is cravings for carbohydrates and chocolate.
This article, I hope amuses you just a little, maybe if I am lucky the corners of your lips turned up just a bit. But it’s hard to be amused my fibromyalgia and its scores of additional symptoms as if the chronic widespread pain is not enough. For the most complete list of symptoms that I know about, go to Fibro Symptoms.
Troy Wagstaff

Review Of Motion Picture The Cake And Comments About Chronic Pain

Review Of The Movie Cake And Comments About Chronic Pain

The movie “Cake” starring Jennifer Anniston. It is billed as a movie about Clare Bennett, who deals with the suicide of a member of her chronic pain support group. Here is the advertising blurb about the movie.

“The acerbic, hilarious CLAIRE SIMMONS becomes fascinated by the suicide of a woman in her chronic pain support group. As she uncovers the details of Nina’s suicide and develops a poignant relationship with Nina’s husband, she also grapples with her own, very raw personal tragedy.”

Jennifer plays a woman afflicted with chronic pain due to injuries and metal rods in her legs, the story is not clear about the accident that claimed the son and severely injured her. She is supposed to be a “hilarious” character. I did not detect that in her character at all. I did detect some sarcasm in some of her dialog.

The biggest problem with this movie is that we have no idea who Claire was before the accident and resulting chronic pain and drugs. We don’t know what aspects of her personality and behavior are affected by her chronic pain and narcotic use. Both chronic pain and chronic narcotic use can have an effect on one’s personality and behavior. Not knowing what she was like before, seriously hinders us from knowing the roll of the pain pills.

cake_chronic_painOne view of the movie and most are left thinking that people with chronic pain are addicted to pain pills. That is not at all true and the movie does a grave disservice to those of us who have chronic pain.

There is a lot of evidence of her being addicted to pain killers and the fact that she had hidden stashes of narcotics around the house suggests that she is addicted. But if they want to address the issues of chronic pain they need to also address the role that pain killers play in pain management. They don’t.

There were some interesting aspects of this movie as Jennifer Anniston played a pain ridden Claire such as her laying down flat whenever she was in a vehicle.

Her character had a hard time standing up and sitting down. She used her swimming pool for relaxation. She had trouble sleeping. She moaned when making certain movements, but if I was the consultant to the movie she would have moaned a lot more when rolling over from her back to her side in bed or when standing up from a seated position.

It also showed this chronic pain patient as having a bad attitude and angry. I can relate to that. We’re not always ornery and angry, but we all have our moments.

I would like to see a similar movie about someone who suffers from chronic pain who doesn’t have the financial benefits she did. Show us a person with chronic pain and fatigue with limited financial resources. That would make for a good movie, depressing but realistic.

The movie showed that Claire, the one with chronic pain, still had an interest in physical intimacy. Being a man, I can’t speak to that, but I look at it dubiously.

This isn’t a theatrical review of the movie, I am reviewing the movie and its storyline from the perspective of someone who has had chronic pain for more than eleven years and fibromyalgia for more than thirty years.

Overall, this movie “Cake” is not a great movie to represent chronic pain. But it is a start. Chronic pain is prevalent in our society that it is bound to come up more and more in our cinema. Hopefully they will do a better, more responsible job in the future.

Chronic pain is very real and very difficult to deal with, both from the patient’s perspective and from the care givers perspective. This movie is rated R and not family friendly.

One last thought to anyone who might read this and not understand the effects of chronic pain, everyone who has chronic pain responds differently.

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