Sunday, December 13, 2009

pain management

For 17 years I've been battling shoulder pain. I blamed it on the lupus/ fibro, because it showed up at the same time as the illness, but it seems it might instead be connected to my guitar playing habits. Regardless of the cause, it still freaking hurts and keeps me awake most nights. Because I'm now taking low dose naltrexone, I can no longer take the very effective narcotics my doctor prescribed me.

I've also been told for years to avoid advil, of which at one point I was taking 12 pills a day- because it damages your kidneys when you take it habitually. That was upsetting to me, because Advil was so effective and non-narcotic; it didn't make me sleepy, or have any other effects that I was conscious of.

I'm getting acupuncture again, which helps some, but my habits of guitar playing and long drives (my job, in other words) kind of undo the treatments, so I'm still suffering and trying to find ways to manage the pain.

So, I was pretty glad to to hear that ibuprofen is now available as a gel. I got a voltaren Rx from my rhuematologist, but i first heard about the gel's availability from a friend who bought some on

I'm also a fan of icy hot, but you can't use icy hot in combination with a heating pad, which I like to use when the gel isn't enough.

I also sometimes use salonpas capsacium patches, which you can leave on for 8 hours. They can feel a bit like ripping off a bandaid when you remove them, but if you coast them with oil before removing, it helps a lot (I use olive oil even though it grosses my hubby out to be using food products on skin. Well, at least he's not kinky.).

I also have some flexor patches, which are ibuprofen patches. I didn't find them quite as helpful as the gel, which I also use on my foot (I'm not entirely cured of the Morton's neuroma, the inflamed foot thing i developed this past summer and got a couple shots for).

I also have a TENS unit, which has been really helpful at times.

And a suction cup massage device!

And relaxation CDs.

I'm trying an all-natural pain cream recommended by someone on a discussion list. She got it from (use this discount code at and get $5 off any order: DIT074 )

Anybody else got some good tricks you'd like to share?

fight off colds fast

Whenever I feel a cold coming on, I grab my bottle of Umcka cold care and take it every few hours. Rarely do I have a cold last longer than a few days, now that I've discovered this stuff, which was recommended to me, if I recall correctly, by a worker at Whole Foods. Given that I've got an immune system that is always either suppressed by drugs or busy fighting a civil war with my own body, I find it pretty remarkable that I'm able to keep the common cold from lasting more than a couple days, or even worse, landing me in the hospital or turning into pneumonia. It seems to work by boosting immunity and creating a fever, because I always feel kind of feverish about an hour after taking it.
I've been using this stuff (as needed, a couple times a year) for about 8 years now, totally swear by it. Being cold and flu season, I thought I'd write a post about it, in case it might be of help to someone else.

Wednesday, December 9, 2009

what's illness and what's not

well, here's a real shocker: the shoulder pain i have been attributing to fibro for 17 years is in fact caused by something else: hanging my right arm over a guitar for hours at a time on a regular basis. I'm short (5'2") and your typical guitar is made with someone much taller in mind, so it knocks my frame way out of any remotely ergonomic position and leaves it there for hours at a time nearly every day. Pain is a great motivator, and so for the last couple of weeks I've been quite motivated- to do something about the pain. So i went back to get some acupuncture, something I've gone without for several months. That's when I found out the pain was not from fibro, or lupus, but from bad guitar-playing habits.

Sometimes it's not just the illness, and now I find I neither have to put up with the pain, nor do i have to keep throwing all sorts of pain remedies at it. Nor do i have to go get some cortisone pumped into it. I just need to turn the guitar facedown on my lap when I'm just holding it and yapping, and not actually playing it; and, I need to use a smaller guitar. Meanwhile, the acupuncture appointment broke the cycle of pain, tension, and inflammation.

3 weeks ago I started taking LDN (low dose naltrexone). It has been extremely effective in a couple of clinical trials for lupus patients. In order to go on LDN I had to give up all my narcotic painkillers (I've only had a doctor who would give me narcotics for the last 2 years). I was pretty uncomfortable for a couple weeks, with the shoulder pain- until I got the acupuncture. But meanwhile I had noticed my brain fog had lifted. Now for a while I've been attributing my brain fog to fibro and lupus. Sometimes over the course of 17 years that really has been the cause. Now that it is lifting, I'm not sure if ti's because the LDN is calming down the lupus activity, or just that i have a completely narcotic-free brain for the first time in a while.

About a month ago my insomnia was running wild, so I got a relaxation tape. It seemed to break the cycle of tension and anxiety, and I am now pretty much able to fall asleep without much trouble. In fact I've cut my sleep aid in half in the last few weeks. Which may also have something to do with improved brain function. Was I able to cut it in half because of the LDN or because I broke the anxiety cycle with the tapes? I may never know.

So, the point of this rambling is this: whatever it takes to break the cycle. Just as disease can bring you into a downward spiral where you can't tell whether the pain is because you're depressed or you're depressed because you're in pain (who cares? let's just get things turned around!)- so, too can healing be an upward spiral: I'm in less pain so i sleep better so i need less sleep medication so my brain is clearer. And, I'm more well-rested, therefore I feel better, therefore I am happier, therefore I feel better. And so on.

Thursday, December 3, 2009

Book Synopsis: Model Patient: My LIfe as an Incurable WIseass

Just finished reading Model Patient: My Life as an Incurable Wise-Ass, by Karen Duffy.
This is a memoir, released in 2000, and was a NY Times bestseller.

Karen was something of a celebrity when she developed sarcoidosis, an autoimmune disease that causes hardening of soft tissues. In her case, they discovered a lesion on her spine; her sarcoidosis was a rare form, being sarcoidosis of the central nervous system. She was (and is) a model for Almay, was an MTV VJ, and appeared in Michael Moore's TV Nation and The Awful Truth, and in Dumb and Dumber.

Karen has a fantastic attitude toward life in general- she's got a great sense of humor, and of fun and play, fearlessness, and spontaneity. She was raised devout Catholic, by parents who instilled in her and her siblings the importance of community service. Karen was a recreational therapist in a nursing home when her modeling career took off. She kept that job for as long as she could, juggling both careers until the modeling and acting took up too much time. Later, when very ill she goes back to the nursing home ot volunteer- and helping cheer up others others cheers her up.

Occasionally, her humor and attitudes towards other illnesses comes off as insensitive and flip, like her assumption that "we know what causes" lung cancer (smoking. Actually, not true- a very large percentage of people with lung cancer never smoked) and her list of disease that she thinks are funny like Stiff Person Syndrome and Wandering Spleen- My rule of thumb is to only joke about things I've actually gone through. Making fun of others' maladies, even if you're suffering from something equally weird or embarrassing, is skating on thin ice, like a black guy making Jew jokes or vice versa. Maybe you've both suffered because of your ethnicity, but that doesn't give you permission to joke about the other person's suffering.

I also disagree with her blanket dismissal of all alternative medicine as quackery and her claim that in China they don't even use Chinese Medicine. Were she to look into the history of so-called modern medicine, she'd realize it is only about 150 years old, and that only 150 years ago doctors routinely amputated perfectly good legs and drove drills into skulls, leaving their patients catatonic. She dismisses acupuncture without looking into it, and makes assumptions that the needles will hurt a lot, which in fact they don't. And she makes numerous jokes about enemas, basically holding them up as some kind of running joke about how idiotic people are for trying anything that's not a pill or a shot. She sums up her attitude towards medical treatment in one word: "Compliance." When you have a chronic illness, in my experience, unquestioning compliance can be very dangerous. The kinds of drugs that save your life, like prednisone, can also leave you just as sick from their long-term use. She herself now has been very damaged by both the disease and the treatments, and has acquired morphine addiction. She *has* to have morphine every few hours.

It's not surprising she would go the route of compliance, as this completely jibes with her upbringing and current practice of devout Catholicism, which has an extreme deference to authority. I don't fault her for it, and she seems to be totally OK with her choices, despite the fact that her choices have left her with a morphine addiction and changes in appearance (from the steroids) that caused her to undergo plastic surgery to correct them (something I have considered, if I could afford it- who wants a turkey neck in their 20s?). I just don't agree with the attitude of total unquestioning compliance for myself, and I don't think she should dismiss all other choices as "Quackery" without even looking into them. She even says that everyone has to deal with illness with their own approach that works for them. So I just wish she's show the same respect for other people's choices (and diseases) that she wants for her own.

That being said, it's a funny, colorful, well-written, page-turning memoir, and I'm glad I read it. It's the best "illness memoir" I've read yet. Karen is someone I would love to be friends with, and who I am sure I would admire even more if I actually knew her. She seems truly full of life, both before and after developing this disease.

Overall, this book is a great read and has a lot to offer in terms of dealing emotionally with serious illness. I still haven't finished reading David Lee Roth's or Michael J Fox's autobiographies, and I tore through this one in 3 days, which to me is the mark of a great book- I couldn't put it down!