That Whose Name We Dare Not Speak

August 13, 2007


Another post I’m transferring over.

That Whose Name We Dare Not Speak

July 25th, 2007 at 2:36 pm

Tom and I now jokingly refer to fibromyalgia as “That Whose Name We Dare Not Speak.” I even have a folder in my Internet bookmarks labeled that way, and in it I file useful information such as the link regarding alien abductions and fibro. Hey, it’s as good an explanation for this crap as any.

God, I hate this. I’m having such a bad day. I’m being such a whiner. I hurt and I’m truly sick of this. I’m determined to get on top of this mountain of symptoms and live with it in a positive, happy way, but sometimes that feels impossible. I want to live the Bruce Lee way, and just “be water”– you know, just flow with it. But this mountain is huge sometimes. I’m going to list this crazy set of symptoms here, just to get it out of my system:

  • Muscular Pain. This is pain that flows like lava through my body. It most often resides in my hips and booty, but it moves EVERYWHERE– lately, even in my face. It is a dull burn, and the intensity varies (like turning the heat up on a stove burner).
  • TMJ. I think this was caused by the Cymbalta I was prescribed. If I take it in the mornings, I’m completely wiped out by 2:00 p.m. (it makes me fall asleep at my desk). If I take it at night, I have insane, hyperactive dreams, and I grind my teeth. I remedied this by stopping the Cymbalta. The TMJ seems to be gone now.
  • Chronic earaches. To such a degree that I can’t turn my head. It renders me incapable of driving, and completely exhausts me.
  • Fatigue. It hits suddenly, and wipes me out. I’ll feel happy, peppy, and then sleepy. Come to think of it, y’know, Fibromyalgia is like having several of the Seven Dwarves inside of you– Sleepy, Dopey and Grumpy. But I’m learning to be my own Doc.
  • Fibrofog— I get reallly stupid with this. Dazed and confused. Forgetful and sad.
  • Depression. Who wouldn’t be depressed by all of this?

In addition, I’ve had all of these “female problems.” Pre-menopause, Endometriosis, chronic bleeding, etc. Ugh. Pretty.

I hate all of this. I hate how it’s changed my life, hate how it makes people now view me (although I try to keep it a secret) and how I often view myself. I’ve gone from a strong woman to a weak one. Professional to unemployed. Good, attentive mom to an “out to lunch” one. In short, I’ve become a mess.

I’m trying. I’ve read. I’ve been pro-active. Here are the things I’ve tried within the last few years.

  • At least ten hospital visits, and a barrage of tests and medications. At first, no one knew what this was. I was living in a little town in Arkansas, and everyone was thinking that there was something wrong with my heart, because I was mostly feeling the pain in my chest at that time. I believed that it was muscular, but it scared the hell out of me. I was given anti-anxiety medication, arthritis stuff, stress tests, an EEG, ERCP and a heart catheterization. This all went on for about four years. When I moved to a big city, and ended up in the ER there, I was diagnosed with fibromyalgia. Several specialists have confirmed this.
  • Ignoring it. This doesn’t completely work, but it really helps me to focus on other areas of my life. I will never just completely submit to Fibromyalgia. Instead, I try to to view it more as a temporary inconvenience. I WILL, in the end, kick this in the ass.
  • My General Practioner– forget it. He’s just said that I would have to learn to live with the pain. He did refer me to a quack, who gave me a copy of his book and told me to watch a movie called, “What the Bleep Do We Know.” I’m open-minded, but I consider this movie to be mostly a bunch of New Age crap. I can’t believe a doctor would consider JZ Knight (aka Ramtha) to be an expert on anything, especially quantum physics. Good grief!
  • Being my own health advocate. I did drive 3 hours away to see a doctor that I really liked- Mark Pellegrino. He has fibro, and is considered one of the country’s foremost authorities on it. We agreed at the outset that it was unrealistic to think that he could be my regular doctor, because of the distance. But after testing me, he prescribed Cymbalta and a sleep aid, and recommended two physical therapists in my area. I quit the Cymbalta because of the TMJ. I’m not taking the sleeping pills, because I don’t want to get into the habit. Besides, I’ll soon be unemployed from this, and I won’t be able to afford it. The physical therapists were both researchers and didn’t see patients.
  • Massage Therapy. This helps.
  • Positive thinking and creative visualization. I’m trying.
  • Bicycling. It feels so freeing, physically, to be on my bike. While I’m riding, I feel fantastic. I tend to overdo though. No more 30 mile rides!
  • Ear doctor. He wanted to refer me to a TMJ guy. Again, the expense is prohibitive, and frankly, I’m a little sick of doctors at this point.
  • Anti-depressants. As I mentioned, I was taking Cymbalta, but the cons seemed to equal the pros, so I stopped taking it. Now I’m trying Lexapro, but it’s too early to tell if it will help. If nothing else, it’ll probably keep me from walking into traffic when this becomes too unbearable.
  • Pain Clinic. This was the most aggressive treatment yet. I asked the doctor if he’d ever had a fibromyalgia patient who went into remission from this. He said, “My dear, my job is not to try to cure you. My job is to help you deal with the pain.” Hmmmm…so, he gave me the following:

A TENS Unit, which is this little device that I put on the area of pain, and administer an electrical current to it. It DOES help; however, it’s a tiny device, and my body hurts EVERYWHERE. I accidently fell asleep with it one night (you’re only supposed to use it for two hours at a time). I don’t know how long it stayed on (I assume it has some sort of automatic shut-off), but the next day, I went grocery shopping, and kept shocking myself when I touched the metal part of the cart. I think I was radiating an electric current!

Lidocaine patches, which are great for numbing pain, and a prescription for a muscle relaxer, which was so expensive that I couldn’t fill it. He said that my sciatic nerves are spasming like crazy because of the fibro.

Trigger point injections. He’s lined me up for a series of these, two each session. I had my first treatment last week, and the jury’s still out on the results. The shots hurt like hell (although sedation was offered, and I said no). I’m not sure if it was the shots that hurt, or the fact that the doctor pressed hard on the trigger points at my lower back, while injecting the needle into my butt. I felt worse for a few days later (which I read was normal), then I had some hours of painlessness, but it seems to me that while the shot made my lower back, hips and butt feel much better, the pain just decided to relocate to my upper back. A week later, I’m having enormous amounts of pain in my shoulders and neck. I keep getting headaches and face aches now, which may or may not be related.

I’ve decided to develop my own treatment plan, which includes the following:

  1. Massage (when I can afford it)
  2. Walking (I do this now)
  3. Yoga (I’m signing up)
  4. A more kind and gentle form of employment (looking)
  5. Continue writing (good therapy)
  6. Continue painting (see item #5)
  7. A loving, patient-beyond-belief partner (this I have)

I think I’ve gotten this out of my system for now. Sorry to waste valuable Internet space on this, but maybe some of my experiences will help someone else someday. Someone with That Whose Name We Dare Not Speak.

Permalink 2 Comments


3 Responses to “That Whose Name We Dare Not Speak”

  1. Ivan Says:

    Hi, my name is disman-kl, i like your site and i ll be back 😉

  2. Cynthia Says:

    Thank you for your candor and humor. I too have “that whose name we dare not speak” in addition to Myofascial pain syndrome and an unwelcomed entourage of other ailments (how much they are related or even caused by the “F” word I do not know). I’m also facing an employment meltdown. I’m a nurse and it’s becoming increasingly difficult to maintain employment. Kinda “not good” to have your health care provider calculating critical meds when in in the “fog zone”!!! I was wondering if you have found success in finding new employment? thank you so much….

  3. Hi Cynthia-

    I’m sorry you have TWNWDNS, as well as your other conditions. It’s amazing how much we take our health for granted until we lose it, eh?

    The employment thing is still precarious for me, and I’m still trying to figure it out. I truly feel for you on this issue, because the scariness of the prospect of being poor, homeless, etc. looms large and adds to the stress, which just makes all of this worse.

    I was called back to work recently, which has been giving me a chance to see how my body handles things these days. It’s been sort of horrendous, but it has given me enough of a jolt to realize that after this assignment ends (if I make it through)I have to go apply for Social Security. I’ve heard that it can take up to five years to get approved.

    In the meantime, I’m looking at self-employment options and work-at-home options, and I’m planning on writing a book. I even considered starting up an employment bureau for Fibromyalgians, but then I realized that no one would show up for work! FMS makes many of us pretty unreliable.

    Another option to check out is your local rehabilitation services agency– they test, retrain and find jobs for the disabled.

    If you come up with any ideas, PLEASE let me know. I wish you the absolute best.

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