A Few Updates

I’ve been very busy with the release of my book (yay!) plus continuing to work some healthcare shifts, and the best way to catch up here is a series of random updates. Here they are:

  1. The regenerative medicine doctor is awesome. After several comprehensive blood tests, he settled on a supplement regimen to help me restore some of my health. Based on the results of my blood work (and OMG it was a TON of blood work– never want to do that again), I’m taking more than a dozen supplements twice a day to address things like low testosterone, gut yeast, and inflammation. All of the supplements are purified and/or hypoallergenic. Some of the supplements I take are fish oil, magnesium, turmeric, DHEA, and an interesting little combo called “cognitive aminos.” I feel much better in general, have less anxiety, and have pretty much gotten used to swallowing a zillion capsules a day. All of this, of course, comes at a steep financial price and is NOT covered by my extremely expensive health insurance policy.
  2. I’m midway through Class IV laser treatments on my back. It, too is expensive and not covered by insurance, but it’s really helping. Almost all of the referred pain is gone from my butt, and there’s much less referred pain in my groin and abdomen. I’m still having a hell of a time when I lie down, and I’m losing my mind not being able to work out as much as I want, but the lack of butt pain is miraculous.
  3. Despite trying not to, I still have to take occasional prescription meds. Two nights ago, I took one muscle relaxer because it was 3 a.m. and I was in misery. I don’t even think it did anything clinically except knock me out, but it was nice to have lights out, if only for a few hours.
  4. I started the first round of paperwork to get medical marijuana for muscle spasms. It is an absolutely ridiculous process and it, too, will not be covered by insurance– assuming I’m approved, which is a big assumption. Soap box– I could go get a prescription for something a lot stronger, a lot more addictive, and a lot heavier on the side effects tomorrow and fill it the same day. There’s something very, very wrong with that.
  5. My book is finally out, and I’d really appreciate it if you’d take a look at it. Click here to see it on Amazon.

 

Regenerative Medicine

I’m highly skeptical of our modern medical industry— not because of practitioners so much as insurance companies’ influence on patient care. I’ve heard of boutique medicine, which as I understand it is essentially cash-pay for individualized treatment outside the bounds of insurers, but I’d never had experience with that type of doctor. I already pay more than my mortgage every month for our health insurance, then still owe co-pays and deductibles if I actually use the insurance, so the idea of paying fully out of pocket isn’t appealing at all. But desperation breeds willingness to try new things, so I went to an open house for a regenerative medicine doctor who practices outside the confines of insurance interference.

The facility was nice and clean, but not overly ornate. It had less of a clinical feeling and more of a personal vibe, and the doctor and physician’s assistant were welcoming and engaging as they greeted visitors. Instead of a waiting room full of literature about prescription drugs, I saw holistic supplements and bone broth for sale. The doc and PA looked extremely fit and healthy, and while of course looks can be deceiving, as an athlete, I was impressed that they appeared to work hard for their physiques. Cautiously, I began to feel hopeful and wonder if I’d finally found some real medical help. I registered for my first appointment, then went home to fill out a dozen pages of online paperwork.

The questions asked by the clinic’s online health history program were shockingly personal, in a good way. Even for the gender identifier, their were options beyond just male/female. I’m not transgender, but if I were, there was a space to identify as myself. What a breath of fresh air! I listed the various diagnoses I’d received over the years (fibromyalgia, cervical dystonia, guttate psoriasis, etc.), but also answered questions about my diet, exercise, and sleep habits. The forms were more thorough and probing than anything I’d seen at an insurance-accepted place.

A few days later, I sat in my truck outside the office and tried to calm myself with a few deep breaths. I wasn’t nervous about what would happen at the appointment, but I was very nervous that even the cash-pay, uninhibited-by-insurance doctor couldn’t help me. I’d put so much hope in the hands of medical professionals in the past and usually been slapped with disappointment, so I’d mostly quit seeking medical interventions. But May was a really, really hard month for me, and I needed help ASAP.

My appointment was over an hour long— 60+ minutes with just the doctor and me! No interruptions, no hurried feelings, no bullshit. It was more like a conversation than a medical appointment, even though he examined my back and talked about symptoms and tests and nutrition. I pulled out my usual stack of photographic evidence— pictures of my ghost-white fingers (Raynaud’s), rash-covered torso, and a few other oldies-but-goodies. He listened, talked, and drew diagrams on a dry-erase board. Unlike every other doctor’s appointment I’ve ever been to, I never once felt like I was keeping him from something more important than our time together.

I left with orders for comprehensive blood work and a kit for finger-prick testing and urinalysis. The doctor would start investigating from the most basic upward, and would look at everything from my cholesterol levels to potential food sensitivities. Only one lab in town could perform the tests, which told me how out-of-the-ordinary this doctor’s protocols were compared to most MDs. The first test was SpectraCell’s CardioMetabolic Panel (plus a few other things, like hormone levels), and next week I’ll find out the name of the next test.

I also bought several supplements that he recommended, including a highly concentrated and purified version of fish oil capsules. His goal is to attack the systemic inflammation in my body, and while he looks for the cause through blood work, he wants to knock it down as much as possible in the meantime. And no NSAIDs! That was one of the most shocking things he said. I’ve been on and off (mostly on) the NSAID train for so many years, but he’s adamant that NSAIDs actually inhibit healing. I’m sure there are skeptics, but after years of NSAIDs and chronic pain, I’m very willing to try new theories.

I’ve had one blood draw already and will go for the next one next week. Once the results come back, maybe I’ll finally have a path to wellness. Of all the things I’ve tried over the years, this line of medical treatment seems to make the most sense, and for the first time in a long time, I’m hopeful again.

Traveling with Chronic Medical Conditions

I’m about to travel to Boston soon, and I’m super excited. I love Boston and will get to spend time with a much-loved friend from college days. However, chronic conditions threaten to put a kink in my travel plans, and I’ve been running around town and spending lots of time on the internet trying to make my travels as smooth as possible.

One of my concerns, secondary to my chronic neck and back pain, is psoriasis. I’ve been dealing with an outbreak of guttate psoriasis for almost two months now, and it’s tedious to say the least. It’s currently under control on my limbs, but my torso is covered in angry red patches. My insurance company—this makes me so freakin’ furious I almost can’t see straight—is attempting to deny coverage for the topical medication my doctor prescribed to rid me of the psoriasis outbreak, so I’m walking around itchy and feeling gross. The medicine would be $800+ if I paid out of pocket, and not only can I not afford that, but I absolutely refuse to pay out of pocket for something insurance should cover. We pay more than $1,000 per month for the married couple’s policy, yet it doesn’t cover the one prescription medication I’ve needed in a long time.

I’m trying to deal with the psoriasis without prescriptions and so far haven’t gotten good results at all. Gluten-free, dairy-free, sugar-free diet—yes. Scent-free hypoallergenic bath soap—yes. While a restrictive, healthy diet and organic soap likely help my overall health, the psoriasis persists. I’m very lucky that it’s only guttate and not a more serious form, but it still sucks. I don’t want to compound the discomfort of travel by itching like hell, but it looks like I may not have a choice.

What really worries me about travel is my insomnia and chronic pain. I still can’t sit on a soft surface, despite experience massive improvement in pelvic stability since dedicating myself to a challenging core workout routine. I’ve even returned to running—a huge, happy milestone—but sitting on a soft surface (like a plane seat) is almost impossible. Something about cushioned seating makes my pelvis shift, which causes instant misery. I plan to stand as much as possible and kneel in my seat if I have too. I’m a small person, so hopefully I can do what I need to do without bothering my fellow travelers. If not, I guess I’ll probably end up inspiring someone’s bitchy Facebook post about a squirming seatmate. Sorry in advance.

I always worry about an impending attack of cervical dystonia, and change is my enemy as far as muscle spasms are concerned. I’m going to try to fit my cervical pillow into my suitcase so at least I’ll have a familiar place to rest my head and neck at night. Flying up the coast and sleeping in an unfamiliar bed worry me, but I refuse to let my sketchy health rule my life.

I bought some homeopathic zinc lozenges today and will use Counter Attack supplements to try to help my body through the germs it’ll encounter in airports and new cities. I also bought some hypoallergenic cleansing wipes and will make sure to scrub my phone with wipes, too. I’m not paranoid, just realistic, and I imagine anyone with chronic pain and/or chronic disease can relate.

Supplements and Sleep

calm thoughts supplement
image from source naturals’ website

Has anybody tried a supplement called Calm Thoughts? I’ve been using it lately and have had a week of fantastic results. I’ve been sleeping almost normally for the first time in years, and my pain is way down.

I’m off all prescriptions, and so thankful to be out of the vicious cycle of one pill begetting another. Chronic pain and illness (including fibromyalgia) often necessitates prescriptions, but I hate taking them. I’m much happier if I can safely and effectively use homeopathic supplements.

Now that I’m sleeping, I wonder if the massive improvement in my symptoms is due to the supplements themselves or the repair my body is able to do while it sleeps. We all know how important sleep is to healing, so it stands to reason for me that my return to restful sleeping might be the best chronic pain medicine available.

Top Five Ways to Stay Healthy

I take Counter Attack daily.
I take Counter Attack daily.

5. Wash your hands frequently and thoroughly. This seems like a no-brainer, but I stayed well through the entire fall season when a lot of people were sick. I think a lot of my wellness had to do with washing my hands with warm water and soap more often than I wanted to—especially after grocery shopping, checking the mail, and at work.

4. Sleep. Having fibromyalgia or any kind of chronic pain can make sleep very difficult, but do what you can to get as many hours as possible. I’ve taken to sleeping on my camping mattress on the floor with my legs on three pillows. I look ridiculous, but my back hurts less and I’m able to rest.

 

3. Try herbal supplements and teas. I like spirulina and Counter Attack. They taste bad and require a quick swallow and lots of water, but they make me feel energized. I also like Throat Coat tea. Of course, make sure your healthcare provider clears you to take supplements before you try them.

2. Exercise outdoors. Even if I only go for a short walk in the woods, I immediately feel better physically and mentally. The clean air and peacefulness helps me connect to the planet, and the movement helps with my stiff joints. I feel sick in general if I don’t get time outdoors.

1. Avoid processed foods—especially sugar. There are lots of studies that show the negative effects of processed sugar. Yes, it tastes good, but feeling like crap and/or getting very ill isn’t worth the momentary blissful taste. Fresh blueberries will taste super sweet after you get used to abstaining from processed sugar, so go for fruit if you need something sugary. As a side note, I ate some candy and cookies as the new year approached, and caught a very bad cold within a few days. Coincidence? Maybe, but I’d been healthy for 14 months before, and those were 14 processed-sugar-free months.

Product Review: Topricin

TopricinI’m always in the market for any pain reliever that’s homeopathic. The local co-op recently had Topricin on sale, and I bought a 0.75oz tube to give it a try.

I’ve seen pretty bold claims on homeopathic products, and I’m often skeptical. (However, I love Crystal Star Natural Muscle Relaxers and good-quality magnesium supplements). When I first squirted the Topricin on my finger, I was even more unsure of its claim of pain relief. But my back was killing me, so I gave it a try.

For starters, it’s either odorless or has such a slight smell that I can’t detect it. I’m accustomed to all topical pain-relieving products having at least some kind of odor, including my beloved (and quite fragrant) Tiger Balm. But the Topricin literally smelled like nothing.

I rubbed it over my sore vertebrae (thanks, fibromyalgia) and waited for any sort of tingling or other sign that it was working. Nothing. But then I went to sleep, and that’s a rare thing when I’m in pain. I woke up at 3 a.m. to pee and realized my back was much better. Topricin or coincidence?

I tried it thrice more and now I love this odorless product. I’ve sometimes combined it with Tiger Balm for extra relief, although I have no idea if that’s smart or not. I’ve only used Topricin on my painful back and hip, but it says it’s patented for neuropathy and specifically mentions fibromyalgia, plus a host of other conditions.

Nothing is a cure for chronic pain, but Topricin helps, and sometimes that’s the best we can do. Plus, it’s not as full of extremely sketchy ingredients like some prescriptions, and it doesn’t cost much to try a small tube.

Good luck in your pain relief journey, and let me know about your favorite topical products.

As with all things health-related, ask your healthcare provider before trying anything new.

Supplements

Four Natural Muscle Relaxers and a cal-mag-zinc.
Four Natural Muscle Relaxers and a cal-mag-zinc.

What supplements, if any, do you use to improve your health or alleviate symptoms? I’ve experimented with lots of them, and switched brands fairly often. Currently, I take a lot of magnesium to help with muscle spasms caused by dystonia. I also take fish oil, melatonin, and cal-mag-zinc at night. I don’t take a multivitamin because my diet is so clean that I don’t feel like I need one.

For fibromyalgia and/or dystonia flare-ups, I keep Crystal Star Natural Muscle Relaxers on hand. They don’t work wonders, but they also don’t make me turn into a useless zombie like prescription pills do. I tried Curcumin but got no relief, so now I just include a decent amount of turmeric in my diet (just in case it works over time), which is essentially what’s in Curcumin.

I can’t underscore how much I hate prescription drugs. Even though it’s often impossible to live without them, I’ve been so beaten down by side effects in the past that it now takes a very, very bad day to make me turn to prescriptions.

Paraphernalia for the Fibro Sufferer

It looks medieval (if you ignore the blue plastic), but it's actually a great took for working out trigger points in muscles.
It looks medieval (if you ignore the blue plastic), but it’s actually a great tool for working out trigger points in muscles.

What images do you have to describe fibromyalgia? When I look around my house, I see signs of it everywhere. Three bottles of Crystal Star Natural Muscle Relaxers are on my kitchen counter. Two jars of Tiger Balm are on my nightstand and a Back Buddy is on the couch. A cervical pillow is on my bed. My fridge is full of GT’s Kombucha and organic vegetables, and the bathroom looks like an infirmary supply closet.

I took a few pictures of some of the various symptom-relieving paraphernalia around the house and will compile a comprehensive list later this week. Do you have anything you swear by to get through bad days? Nothing in my arsenal is a cure, but each piece has helped at some point.

Kombucha and Probiotics

gt kombucha
Gingerade flavor is the best I’ve tried.

Has anybody tried probiotics to help with the myriad symptoms of fibromyalgia? I’ve been enjoying ½ a bottle of GT’s Kombucha every night for a while now, and I’m feeling a bit better in general. I definitely swear by the magnesium supplements that I started taking a few weeks ago, and I’m pretty sure the combination of kombucha and magnesium is a good one.

Flavor-wise, I’m definitely a huge fan of Gingerade. It’s delicious. I tried Original and thought it tasted like watered-down apple cider vinegar. Stawberry Serenity was good but a little too sweet-tasting, and Gingerberry just made me wish I’d bought Gingerade. But seriously… this stuff is raw and organic, theoretically good for us, and tastes great. Any kombucha users out there?

Dystonia Nightmare

I’m worried that my dystonia is spreading. I’ve only been diagnosed with cervical dystonia, but the muscle spasms in my back and right hip have gotten worse in recent months (despite a few breaks). And in the last two weeks, I’ve woken up multiple times with my calf muscles knotted into agonizing bundles.

I’m still diligently taking magnesium supplements, which curiously seem to have helped relieve some of my neck spasms but haven’t touched my lower body. I bought another variety today—Bluebonnet Magnesium Citrate—and hope that if I up the dose and take different types, I’ll stop having so many spasms.

That said, I’m no fool. I know that the increased fasciculations, cramps, and full-blown spasms are a serious issue. I found a movement disorders clinic at a big city hospital five hours from me, and I’m headed there in August for a workup. I don’t know if fibromyalgia or dystonia came first, but at the moment, the dystonia is the scariest thing I’ve faced after years of mysterious symptoms. To not know if I’ll be able to walk normally (or at all) from one minute to the next is a unique kind of torture.

I haven’t run in 9 days because last Sunday when I ran, I felt great in the morning, but later locked into an all-night battle with spasms through my torso, hips, and legs. Dystonia, like fibromyalgia, is often poorly understood, and I’m just hanging in there the best I can. Slow walks and time on the elliptical seem to help me stay mobile and sane, but I feel like my body is getting away from me. I’ll keep y’all updated on how this plays out, and if you have suggestions, please let me know.