update: 1/21/10

As I've posted before, I recently started taking LDN (Low dose naltrexone) in hopes of getting ym autoimmune activity back under control. I got my lab tests back on 1/15 and they were disappointing- I'm actually getting worse.
However, I do have to consider two things: I went on three trips in one month (airplane- very stressful and aggravating) and I got about 20 mosquito bites and spent a week in very unpleasant company right before my labs. Lupus is exacerbated by stress.
The other thing to consider is that when you use alternative medicine, sometime things get worse before they get better. Folks often call this a "healing crisis."

Of course at some point, when things get bad enough, you can no longer afford to wait for them to turn around, so I have not ruled out at some point resorting to getting a shot of prednisone to calm things down. I don't want to go on the oral daily prednisone if I can avoid it, because- as many of you know- it makes me gain 40 pounds, get a moonpie face and acne, have horrible mood swings, and lose my hair. I've already been through that 3 times, and I just can't face a 4th time until I'm sure I've tried everything else. My $40 nylon (itchy) wig sits on the other side of my office, reminding me how close I am to having to wear it again.

My rheumatologist understands my feelings on prednisone (I'm sure he's seen the results many times), and he saw me turn everything around last February- all my tests went to normal- via a gluten-free diet, acupuncture and chi gung. So, he told me to start taking 50 mg/ day of DHEA, and continue on the LDN. I'm also on a sugar-free diet and taking oil of oregano to kill off the yeast; yeast can really wreak havoc with your system, and LDN can bring it to the surface. I'm also taking 2 tablets twice a day of an anti-inflammatory herb (this concoction is called Cox 2), and 1 tsp fish oil, probiotics twice a day, and a multi-vitamin. I continue doing chi gung every day. I am also using foot detox pads, and doing the writing exercises in the book "Healing Lupus." Those exercises are about releasing toxic emotions.

It's not a very scientific approach; a scientist would change only one variable at a time, so he could figure out which change was the most effective. But I don't feel I have the luxury of time on my side, so I'm using numerous strategies together, in hopes that I can turn things around quickly and remarkably enough that I can avoid the prednisone.

In November, I met a guy who was a fan of my music for 5 or more years. He didn't realize I'd had so many health struggles (guess he missed my 3rd CD- every song on there is about medical stuff!). He's been on prednisone 15 years straight. No one told him about the long-term ramifications of taking prednisone (they are so serious I don't think the words "side effects do them justice). He has gout and diabetes, caused by prednisone. Or as the medical community would call it, iatragenic. meaning, caused by medicine. Kind of messed up that it happens so much- diseases and injuries caused by "treatment"- that they have a word for it.

My one unscientific observation I can make about my progress since the blood tests is that my shoulder pain finally let up today (knock on wood), for the first time since early november. I've been in constant pain since early november, and unable to take painkillers because they are incompatible with LDN. So just for today, I have a little relief. And it feels weird, like a friend (one who I can't stand, but got used to) is missing. Let's hope this friend stays gone. He's spent too much of the last 18 years hanging around contributing nothing good.

update 2/1/10 Happy to say still almost completely free of shoulder pain. Every now and then a little twinge will creep in at the end of the day, but I'd say it's 95% gone, thank heavens! Unfortunately, it seems to have been replaced by nightly headaches, If I must choose, though, I'll take the headaches. Clearly what I am doing is still not quite enough, so I'm going to try to get an acupuncture appointment this week. That always helps.

update 2/7 the headaches left and the shoulder pain returned. After almost a year of non-stop pain between fibromyalgia, morton's neuroma, back to fibro and headaches, and the resulting sleep deprivation and loss of morale, I decided the LDN is going to have to take a back seat to me keeping (or locating) my sanity. So I am stopping the LDN so that I can take narcotics for pain relief. I have returned to acupuncture, in hopes of getting the pain back under control so that I can get back off the narcotics, and back onto the LDN. Meanwhile I continue to take Oil of oregano to kill off the yeast, so that when I go back on the LDN, it will be more effective. I'm also taking a pile of other supplements/ herbs: liquid DHEA, olive leaf extract, garlic, MSM, liquid Vit. D, multivitamin, fish oil, probiotic, flaxseed, and curamin. And my BP med and attivan at night. If everything fails and I'm not any better at my next appointment in a month, I guess I'll do the dreaded and get a cortisone shot. We've always got that as a last resort. Who needs bones, anyway, right?

Update: 1/10/10

Nov. 16 I started taking low dose naltrexone, an old drug with a somewhat new use. It was originally developed in large doses to help get/ keep addicts off narcotics. In the process of using it on patients, as is often the case, they found it therapeutic for other things it was not intended for originally; especially it helps reverse autoimmunity when used in small doses, by fixing the shortages of endorphins, as best as I can explain it (for better more thorough explanations, go to www.lowdosenaltrexone.org).

I was successful at reversing my autoimmunity last year by going gluten-free, quitting nutrasweet, and doing chi gung every day. It lasted a month or 2, then I had an exposure to a lot of mold and stress and it all went back downhill. I stayed gluten free, and asparatame (nutrasweet)-free, and now I'm back to the chi gung and trying to take on less work. Plus, I have the LDN now (low dose naltrexone).

I've been faithfully doing chi gung every day since the new year, sometimes twice a day. Now that I have the routine down, it takes less than 10 minutes. I was somewhere warm for a few days, so I swam some and stretched a lot as well. All that really seems to help my shoulder pain, which is not fixed, but better. Because I do not know the cause of the shoulder pain, it makes it hard for me to know if my illness is improving, because of the constant pain (which may or may not be connected to the overall state of my health). But I get blood tests done tomorrow, and see the doctor Friday, so I'll know soon whether my 2 months of LDN have made any difference.

A couple weeks after beginning LDN, I developed yeast problems. This is not uncommon. It doesn't cause yeast problems; it brings existing ones to the surface. And if you don't deal with the yeast, the LDN is not effective. So, for a month now I've been taking oil of oregano (P.U. it stinks and tastes gross- so it must be good for me, right?). I take it when i get up and before bed, and now I'm staying off sugar, in hopes of killing off the yeast (candida). There are some tasty non-nutrasweet chocolates out there, thanks to the diabetic association, though if you eat more than a mouthful, you'll be farting up a storm.

and of course I'm still taking the LDN every night around 12:45am. The discussion groups I found via lowdosenaltrexone.org have been really helpful in guiding me along the dos and don'ts of taking LDN. Blood tests tomorrow- here's hoping for some good news!

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 amazon.com.

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 iherb.com (use this discount code at iherb.com 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.

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.