To stay on track and avoid debilitating crashes and setbacks, I must be very disciplined. I turn down most invitations, and I spend most free time on the couch. I joke that my life is three things: work, union, and couch. But it's mostly not a joke.
Despite this, my energy level has been surprisingly good. My pain and other symptoms have not lessened significantly.
Treatment Update
Here's what I've done for treatment since my last update.
- I continue to take 50 mgs of nortriptylene at night, and have been sleeping fairly well. I have horrible dry-mouth, and as my work involves a lot of speaking, I have cough drops (no sugar added Ricola) with me all the time. I find the dry mouth very annoying, but insomnia or non-restful sleeping is not an option.
- I stopped taking Exhilarin and GingkoRose, because I felt we couldn't afford all the supplements. Looking back at my old posts, I think I need to re-start at least the Exhilarin. My "fibro brain" has returned with a vengeance.
- I'm also taking Omega 3s from wild salmon fish oil, and CoQ10. These are for general cardiovascular health, but there is supposed to be a mental benefit, too.
- The acupuncture didn't reduce my pain, but it did reduce my temperature! I am still warmer than most people (have been all my life), but I'm no longer flushed and burning up all the time. Some time after completing the course of acupuncture, I wanted to have more, but the doctor had moved out of the area. I tried another doctor, and had the complete opposite results. Not only did the needles hurt, they produced no positive results, and I suffered nerve damage. At the site of one needle insertion on my hand, I have nearly constant itching. My conclusion is that acupuncture can have great results, but it's down to the individual practitioner. And how do you find someone whose technique will work for you?
Trying something completely different
Now for the big news: a therapist recommended that I try something called Eye Movement Desensitization and Reprocessing, known as EMDR. This has been shown to be useful in reducing PTSD symptoms... and she says there is a link between chronic pain conditions such as fibromyalgia and past trauma.
I came upon this through a roundabout way. I was having an increase in my anxiety, and asked my doctor for a refill of the clonazepam that I take occasionally. She felt I was taking them too often, and encouraged me to go on a daily anti-anxiety med (an SSRI) rather than an as-needed med.
I was very resistant to this at first, which is strange, since I have witnessed the life-saving (and relationship-saving) effects of anti-depressants and anti-anxiety medications, and I have encouraged many friends to try them. But for whatever reason, I was reluctant to make this change for myself.
But clonezapam and other as-needed sleep/pain/anxiety meds are habit forming. Your body builds up a tolerance very quickly, and also "forgets" how to not have anxiety without the meds. In other words, they're addictive, and you soon need them to feel normal. With my highly addictive personality, and a family history of prescription substance abuse, I'm a good candidate for trouble.
Eventually I gave in and tried an SSRI... and my anxiety has disappeared. I just feel steady, and normal, and in-the-moment. Only after that change did I realize that I had been in a constant state of anxiety. That feeling had become the new normal, and I was only noticing the anxiety when it spiked. So: great results. (The only side effect is yet more dry-mouth.)
My doctor also suggested going for some short-term therapy, possibly cognitive-behaviour therapy, and she suggested that I use my Employee Assistance Plan (EAP) to do. This is the first time I've ever had EAP. It's supposed to be a great benefit - it's confidential, and it's free - so I thought, why not try it. The intake person was great, and found a therapist 5 minutes from my home.
I arrived at the therapist's office all set to try some superficial, intellectual exercise. I thought, certainly I don't need anything in-depth. I've done all that already. I'm all "done". Everything is in its place. But hey, if everything is right in my world, why do I still wake up with night terrors?
These therapy sessions turned out to be anything but superficial and intellectual. In fact, they were kind of grueling. Poking the hornet's nest of PTSD is not easy. It seems absolutely ridiculous - it seems impossible - that one incident, no matter how horrible, could still be affecting me more than 30 years later! But that's wishful thinking. Trauma re-wires your brain. The extreme surge of adrenaline and other neurotransmitters that flood your system from trauma permanently alter your brain chemistry. And comparing the trauma I lived through to other people's trauma is a dead end. Dr. Dennis Charney, a psychiatrist at Yale and director of clinical neuroscience at the National Center for Post-Traumatic Stress Disorder says:
It does not matter if it was the incessant terror of combat, torture or repeated abuse in childhood, or a one-time experience, like being trapped in a hurricane or almost dying in an auto accident. All uncontrollable stress can have the same biological impact.Now add this fact to the mix: fibromyalgia and other chronic-pain disorders are strongly associated with trauma and with PTSD. I suppose I was vaguely aware of this, but this therapist emphasized it more than I ever had.
And that's what led me to investigate EMDR. The therapist said it's been documented to reduce PTSD and chronic pain symptoms in many people. I really don't want to work on past trauma - ever again - but if there's a chance of reducing pain, I will try it.
I've decided to wait a while, as this is the wrong time for me to begin something that might be disruptive or frightening. But I am planning on looking into it, and I will probably try it.
