It's been way too long!

Just in case anyone is reading this...I have had a hard spring and summer this year, and am just starting to feel human again. The main stressor was being made to move when I was in one of the worst flares I've had with FMS and CFS. But now things are so much better. I am getting off two medications; one is Clonazepam (or Klonopin) which is a benzodiazapene. I moved to Utah June 2008 and was on 1 mg TID (3x day), and now I am on a "weaning" dose of .5 mg (1/2 mg) BID (or 2 x day). I am off morphine completely and on a baby weaning dose of Suboxone 2 mg BID, and I have been doing 1 mg PO per day off and on. I had to go on a medication called Requip (not sure of spelling - on generic) to stop the restless extremeties (legs and arms jerking) which the morphine and clonazepam was keeping at bay. So it's all good. The only thing is, I am feeling all kinds of things - 13 years worth of feelings that were blocked with pain medication. The truly AMAZING part of all of this is the FACT that my pain is so much better off the drugs. I had wondered about how much of my pain was rebound pain. I used to wake in the morning and hurt so bad I would just cry and cry until meds kicked in. Now I don't have that problem. The extra pain receptors that are developed when a person is taking an opiate/narcotic medication regularly, slowly die off as the med is decreased. I only learned about this pheonomena a few months ago. As my PCP was explaining to me how pain meds for acute pain are fine. But for chronic pain, he explained this: Meds block pain receptors for a short time (few weeks) and then the brain develops NEW pain receptors. Then you need a higher dose. What had been explained to me previously as simply "tolerance", is actually the brain's normal reaction when a pain receptor is blocked. So you need more, and more, and more, depending on how long terms the use of these meds turns out to be for you. For me it was off and on for 14 years- starting actually in February, 1996, continuing until I moved to Utah. I had been on Suboxone once, but Medicare D Pharaceutical coverage wouldn't continue to cover it. Finally I got it back, but by then I had been on opiates again for 3 months. The first pain center didn't bother to wean me off. The new pain center is great. They know my goal is to be narcotic/benzo-free, and are helping me with a schedule of reduction that is incredibly long, slow, and just a small reduction each month so I experience no withdrawal. I was on 8mg suboxone BID previously. Prior to going back on Suboxone in January of this year, I was on MSContin, 60 mg BID, then went to MSIR 30 mg TID. Tried to start the weaning off the Morphine, but it was quite difficult. And at that time I did not have the doc who understood my leg and arms jerking. Turns out it took a Psychiatrist who is extrememly knowledgeable about meds to help me out. He's the one that put me on the Requip, and explained that I may or may not suffer from Restless Leg Syndrome, because Lexapro - an SSRI that I take- can cause my symptoms. UGGHHH! I have learned, re-learned, and learned all over again over the past 14 years. What I was told years ago is no longer true; it turns out there are many more neurotransmitters than anyone knew about until very recently. I thought that my knowledge was sound! Turns out much of what I used to know has been turned on its head.

I am starting with a new Psychologist. She practices something called "Zyto Evox" thought changing. It has it's roots in Neuro-Linguistic Programming (NLP) that I never studied. My psych masters program was very psychodynamic, which is a way of saying almost Psycho-analytic, but not extremely so. Anyway, I will post some links for my readers who would like to learn more, and then I am posting on Reflex Sympathetic Dystrophy (RSD). If you are reading, I hope you will contact me concerning any topics you would like me to research and post here.

Thanks for reading!
Kathie

Introductory Post

Hello, fellow survivors of "invisible" (or visible) illness...Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis...if I've missed yours, its only due to the numerous possibilities. With this blog, I plan to post articles that I find of interest, but I will need your input to determine if they are interesting to YOU. If after getting a sense of who I am, how I think, you wish to inquire about coaching, please feel free. Coaching is on a "donation" only basis - no set fees, no sliding scale. I conduct sessions by telephone, preferably after receiving a recent photo. My background lends well to this endeavor. I was licensed in Oklahoma for many years before I became ill.

What is Coaching? How is it different from therapy? Well, many of you may already know, but for those that are curious about this I will outline the differences. Coaching is for goal setting; a coach's job is to assist you in setting goals, and then "hold your feet to the fire" to make sure you follow through. I think of it as a personal cheerleader in a sense. Therapy, on the other hand, can be many things, but it is initiated due to a problem. Either depression, anxiety, or in the case of family therapy, a teenager (sometimes younger child) usually acts out, but most often this person is "carrying the symptom" for a dysfunctional family. And, btw, there is no such thing as a completely functional family - just a position on a continuum of less dysfunctional to more dysfunctional.

I have gone back to school online through Capella University. I am working on a doctorate degree in Psychology, with a "health focus". I had to withdraw this quarter due to illness, but I will keep plugging in summer quarter if I am well enough by then. A health psychologist can work in a variety of settings...in a hospital or clinic...in pain clinic to help those like us deal with chronic pain...even doing an initial assessment prior to being seen by a physician. This is becoming more and more popular, and the class offerings are interesting; Chronic Illness (I may apply to teach this one!), Psychopharmaracology (the study of drugs related to improving mental health)...and many others. Coaching is part of what I would have in my "med kit" as one tool I could use. But Cognitive Behavioral Therapy is probably the primary one.

One thing I hope to do with this blog is keep you updated on the latest research. Many of you may know this already, but a 3rd drug has been approved by the FDA for the treatment of Fibromyalgia. The first was Lyrica (gave me horrid side effects), the second one was Cymbalta - an SNRI (Seratonin and Norepinephrine Reuptake Inhibitor). The third, Savella, is another SNRI, but the trials were off the charts successful. So when this one comes out, I'm trying it. It should be out by now, I'll find out next month when I go to the pain clinic. Lyrica was originally prescribed for nerve pain, or peripheral neuropathy; Both Cymbalta and Savella are a type of anti-depressant; but Savella was approved for FMS treatment as it's primary use! It's getting harder for docs to say FMS/CFS is all in your head, or that it's depression. Interestingly, both of the SNRI's have a "depression dosage", and a "pain dosage", twice the depression dose with Cymbalta. So if you have been prescribed this drug for pain, and are taking less than 120 mg, you are not on a sufficient dosage to impact your pain.

I think I'll close the introduction. I'll watch for comments! Until the next post...find at least one positive thing in each day and focus your thoughts on it. Today I saw my daughter and grandchildren. They warm my heart so much! There were some not so great things, but focusing on my 4 beautiful grandchildren...that erases all pain and negativity, if I but focus my thoughts on them, like a meditation.

Like most of you, I have periods when I am less ill, or relatively healthy, but never have I been really well since I fell ill. I've been to