Brief Fibromyalgia Health Update

Some of you know that I have fibromyalgia. It’s not a disease, but a syndrome of problems that results in, among other things, chronic pain, chronic fatigue, and poor sleep. Towards the end of the last year, I began seeing an integrative medicine doctor in the city who prescribed me some supplements.

When I saw him in March, I said I did not think a few supplements were helping so I was stopping them. A month later, I was exhausted again and went back on. Lo and behold, my energy level rebounded in days. I had a follow up recently and told him about this. I also said that what I really wanted to see was an improvement in this chronic pain that I live with.

The pain is both chronic and changes little. Since summer began in earnest with high humidity and heat, I have been feeling worse. Warm and drier is good; hot and humid not so much, unless I’m at the beach. Bitter cold is no good, either. Being warm dressed on a semi-cold day feels nice. And what I mean by nice is a type of weather pattern that doesn’t somehow make my pain worse.

About 10 days ago, I bought a new powder multivitamin that an online integrative doctor sells. My real life integrative doc is friends with online doctor, and I have bought supplements from online doctor’s web site before. I had just finished a packet of multivitamins, but didn’t want to continue doing that. So I bought this powder that tastes very much like Tang.

And ever since I have been taking this multivitamin in my water every morning, I have had a lot more energy throughout the day. Even better than that, I have been able to tackle tasks around the house with ease. When I say ease, I mean that I simply do them after I decide to do them. When you live with pain and fatigue, sometimes the things you want to do don’t get any farther than ricocheting around your brain. After a while, you feel guilty because there are things you should be doing without an ounce of motivation to do them. The vitamins have brought me energy and removed the procrastination. Somehow.

Now the bigger mountain is the one built on pain. My doc suggested I increase one of my supplements called Ribose, which he has claimed has worked to help eliminate persist pain in his other fibromyalgia patients. I will let you know one way or the other. I can tell you know that, if the Ribose does work to eventually eliminate my pain, you will most likely found out when you hear my cry for joy instead of on this blog.

Here’s to hoping!

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A Pursuit of Happiness

February is six months that I have been working with a trainer. I had hoped that working out would decrease the pain and increase the ability of my muscles to handle exertion, but it has not done so. I have gained muscle, lost fat, and seen my body reshape itself into a somewhat leaner one. My health and diet seem to be improving.

Because the pain medications I take do not address the underlying cause of my problem and because vitamin deficiencies I have are associated with these medications, I am in a slow, long-term process of testing whether I can reduce and eventually eliminate my pain medications.

Despite all this, I have been feeling blah and apathetic. I have made few attempts at writing in the last few months. I have been wasting a lot of time reading online news that depresses me; I seem to be addicted to certain Internet sites.

I am struggling with my online habits. I need to stop the time wasting and get back to the activities that made me happy last year: writing every or most days. I have been happiest when I have pursued activities that interest me, and I need to get back to that. I want the kind of happiness that is acquired via the pursuit of fulfilling activities. That’s writing. Exercising. Eating well.

And training my brain to be more upbeat and positive. Not working towards goals only keeps me feeling ‘depressed’ where ‘depressed’ is code for ‘bored’ and ‘not doing anything fun or useful to oneself.’ A dear friend posted a link to Shawn Achor, Harvard positive psychology professor and author of several books, including The Happiness Advantage and Before Happiness. First, I watched a 12-minute TED talk called The Happy Secret to Better Work followed by an hour-long talk he gave at Google. The Google talk includes the same content and wording that is included in the longer Google talk. I also bookmarked a few other talks on the subject of positive psychology.

In Shawn’s TED talk, he put up a slide called Creating Lasting Positive Change. Achor suggests that, for a 21 day period, you do the following:

  • Write 3 things for which you are grateful every day. Each day, write about 3 new things (Emmons & McCullough, 2003);
  • Once a day, journal about one good thing that happened to you in the last 24 hours. Our brains get to relive a happy memory twice, enhancing its effect (Slatcher & Pennebaker, 2006);
  • Exercise so that you train your body to know what feeling good feels like (Babyak et al., 2000);
  • Meditate to help your mind dampen down the negative states (Dweck, 2007); and
  • Perform random acts of kindness to share your positivity and goodness with others (Lyubomirsky, 2005). Goodness knows that the world needs it – desperately!

The effect of doing this is that it helps rewire your brain to start looking for the positive. We know how much negative news is out there. In fact, it’s almost like the understanding is that it’s not really news if it isn’t awful. I feel it happening to me when I read my news sites, when I scroll through my Facebook feed. Rants about politics, stories about people performing acts of hatred, mutilation, and murder on one another.

And then what? I’ve just spent hours reading negative material that drains my energy and doesn’t do anything for me because I’m not doing anything. How does something like that enhance me, my relationships, and the rest of the world? The short answer is that it does not. Something must change.

And the only thing that I can really count on to change is myself. I am the one who has to take the next positive steps – to stop reading news for hours, to put my writing first, to defer time wasters to the evening in timed segments so avoid the endless negative news absorption, and to change my outlook.

And begin writing every day again.

I can do this.

You can, too (whether writing or otherwise).

Learning to Love Lemon and Lettuce

As part of my attention to diet in addressing fibromyalgia, I have been paying a lot of attention to my meals. I used to think that breakfast was my easy dish to make and that lunches and dinners would be hard. Now I am finding that what I have actually done is to redefine breakfast.

What do I mean when I say I have redefined breakfast? I mean that I am looking at breakfast as my first meal of the day. Along with the first meal, I have been thinking of lunch as mid-day meal and dinner as evening meal so that I put them all on the same level.  Instead of relying on cereal, pancakes, and bacon and eggs, I have been attempting to ensure that each meal contains a healthy protein, a healthy fat, and healthy carbs.

When I focus on that combination instead of on the mental biases calling a meal breakfast/lunch/dinner, two things happen. One, I find that my breakfast dishes are more interesting because they have more variety. Two, I am eating better overall and getting more vegetables in my diet, especially salad.

Salad as part of breakfast? Yes!

I used to be horrified when I heard that people had steak and eggs for breakfast. To my mind, that was a dinner dish. The thought of eating steak and eggs first thing in the morning made my stomach turn. Recently, I have heated up leftover slices of steak and put the slices over a plate full of lettuce or mesclun mix. The best part of this is that I am getting more salad into my diet without having to designate an entire meal of salad and while eating more interesting meals. Cool!

Speaking about lettuce/salad brings me to another important discovery I have made: squeezing fresh lemon on food makes everything taste delightful! Instead of dressing, I have used only fresh squeezed lemon as a dressing on my greens, put it on my leftover rotisserie chicken, and even on top of steak. Yes, steak!

Lemon brings out the flavor of the meat and vegetables and is a lively taste on the palate. I myself feel brighter and refreshed after eating a meal where I’ve squeezed lemon over everything. Give it a try. Maybe you’ll love it like I do. When I told my mother, she exclaimed, “Giuseppe came back!” Apparently, my father used to squeeze lemon over everything, too, and was just as crazy about it. Hearing that made me happy.

In any event, I urge you: think of your meals as meals, not breakfast/lunch/dinner; stick lettuce under your protein; and squeeze fresh lemon juice over everything!

Feelin’ Somewhat Better!

I went food shopping on Friday at Fairway and got a lot of food. I picked up some interesting new meats, wild boar sausage and venison & pork sausage, as well as grass-fed beef and ground turkey for stuffed peppers. I picked up some golden beets with greens, chard, kale, lemons, and kirby cucumbers; cashew and almond butters; macadamia nuts, goji berries, and pine nuts.

I picked up some fermented items – kefir, a fermented yogurt; kombucha, a fermented tea; and kimchi, spicy fermented cabbage – the national food of Korea! I’m a member of a Facebook group called Foods for Fibromyalgia run by a certified nutritionist (among many other degrees this lady has) named Deirdre Rawlings. Getting probiotics into one’s diet via fermented foods is one of the healthful foods that she recommends. One of the issues with fibro patients seems to be not enough good microflora in the gut, so I figured I would try it out.

Since Friday, I have been putting an emphasis on eating meat that has iron, a variety of veggies, and a bit of fermented food to aid digestion. For example, I had muesli with fresh cranberries, chopped almonds, and coconut milk along with two tablespoons of kefir, which is like fizzy yogurt. With lunch, I took several sips of the kombucha. With dinner, I opened the kimchi and put a few pieces on my plate. I bought Your Mother’s Kimchi with napa cabbage, and boy is it delightful! You have to like spicy food before you attempt kimchi. My hubby used to buy another brand, but it wasn’t nearly as tasteful as this one was, and I wasn’t nearly as motivated to add it to my diet as I am now.

And I definitely feel like Saturday I felt better than Friday, and today I feel better than yesterday. When I got on the treadmill, I felt like I was in less pain than the last time I got on the treadmill (last Wednesday). I felt perky and peppy in a natural way. I made some jokes and generally felt like nothing was forced, that happiness could just bubble up a bit out of me because I was feeling that much better. It’s really hard to be the happy person you are when you’re bogged down with pain from head to toe.

I still have a lot of pain throughout, but I feel like I have a bit less brain fog. You have no idea what a relief it is to feel like your head is clearer than it has been in years, and that maybe it’s just a little bit of proof that you have haven’t entirely lost all the smarts in your head. Because, lemme tell ya, brain fog makes you feel like you’ve lost 20 IQ points. Now I feel like I’ve regain 5 IQ points. That can feel like quite a jump.

I hope everyone has had a great three-day weekend.

Happy Martin Luther King, Jr. Day!

Happy 2015!

Good resolutions … are simply cheques that men draw on a bank where they have no account.

~Oscar Wilde

Since moving into a small apartment last year, we’ve no longer had a television set. I don’t really miss it, except when I’m sick. Then I wish I could turn on the tube and stare at it mindlessly while images play across its screen. I assume that not having a TV is the reason that I have neither heard much about New Year’s resolutions or thought about it.

In years past, I made lists. What inevitably occurred is that I lost interest or failed to maintain effort. Soon the list was a reminder of my failures. I cursed my lists and threw them out a few months later, hoping I could get bring myself back out of the self-hating funk for not achieving my goals during the year.

For my 2014 resolutions, I decided to go with a short list of a few items, broadly written, so that I could have some flexibility as to how I could achieve my goal. In 2014, I wanted to write a book and get healthy. I started off with a lot of writing and have had my struggles to maintain it. In August, I began working out at the gym and making sure I put in my time four days a week.

For 2015, I have already decided to continue to focus on those two areas in my life: health and writing. For writing, I will continue to write in my blog here twice a week, and get back into my daily writing and book writing.

For health, I will try and figure out if I have any food issues through trial and error in the first few months of the year. I am in a Facebook group called FOODS for Fibromyalgia. Earlier this year, I bought access to a 12-week program devoting to helping you identify your health issues and perform a series of food challenges. I forgot all about it until recently. I started yesterday by listening to the weekly call and began charting what I ate in my food journal. On Sunday, I will be removing all foods with yeast in them for two weeks, followed by a reintroduction. I will be doing the same thing with dairy, gluten, and sugar.

I am deeply praying that I can get some relief by identifying offending foods and removing them from my diet. Being in pain everywhere on your body is no fun, and I really want to feel better. I watch the pain-free people I know moving on with their lives, following their dreams, and adding to their lives. I’m tired of living in my own shadows. I want to soar. Wish me luck.

And good luck to you in 2015!

Office Date with a Doctor

Before I moved to NY last year, I was treated by Dr. A., a physiatrist (physical therapist + medical doctor), for four years for fibromyalgia. Dr. A’s approach included pain management through medications, proper sleep habits, daily meditation, diet, supplements, aqua therapy, and exercise. I implemented most of her recommendations on a regular basis. Although I did see moderate improvement in daily pain level, I experienced flare ups and my chronic fatigue, while improving over time, did not significantly see a reduction.

After moving, I found a primary care who has been willing to keep me on my current regime of pain medications (gabapentin and duloxetine). When I said I wanted to go off duloxetine, she wanted me to see a psychiatrist who would manage the administration of it. We discussed this over a couple of visits, and I told her I wanted to see a specialist  who would treat my fibromyalgia from a holistic standpoint, just like Dr. A had done. My primary gave me the name of a doctor in NYC who she thought might be able to help.

One night, I submitted my information online requesting more information. Within two hours, the doctor called me directly to talk. I was stunned at the quick response from the doctor himself, not one of his office staff. Office staff calling me back at night to make an appointment would have been unusual, but this even more so. When I asked what his availability was, I learned I could have gotten an appointment as early as two days later.

We discussed in brief my medical history, what I was looking for, and his background. In the past few years, I came across at least two other docs who claim to have had positive results working with fibromyalgia patients. One of them, Dr. Jacob Teitelbaum, uses an approach to treatment he calls S.H.I.N.E (sleep, hormones, immunity, nutrition, exercise). Turns out, this local doc is friends with Dr. Jacob Teitelbaum and uses the follows the same protocols to treat his fibro/CFS (chronic fatigue syndrome) patients.

I said I would call the office after I had figured out my finances because their office takes no insurance. No surprise there. Because I hate rushing into things and because my husband was not around for a few evenings to discuss this, I didn’t call back until the following week.

Yesterday, I met with Dr. D. who was just as pleasant and professional in person as he had been over the phone. I brought blood test results from this year’s and last year’s annual physical exams. Last year’s testing was extensive. My new primary asked if I had been tested for Lyme and other conditions, which I hadn’t.

After looking over the results, Dr. D said my thyroid values, B12, and folic acid values were low. While I sat in front of him, he called in a custom T3 med for me at a custom pharmacy. He gave me a B12 shot in my right arm and the folic acid shot in my left arm. If you’ve never had a folic acid shot, they HURT. He told me it would hurt for an hour. Fibro increases my sensitivity to pain. I felt pulsing pain over the course of two hours, and it caused me to have a diffuse flare-up of pain throughout my body for the afternoon until the pain in the arm finally died down completely.

To address my lack of restorative sleep, he also prescribed supplements – CoQ10, L-Carnitine Tartrate, and Corvalen (Ribose). One line of thought with fibro is that it is caused by the inability of your cells’ mitochondria to take in energy. This, in turn, causes painful spots throughout the body. These supplements help the mitochondria get the energy into the cells of your body to address the pain issue, which, in turn, lets you get restorative sleep.

I bought the three supplements from the office, though I could have gotten them elsewhere, because I wanted to begin immediately. I called the custom pharmacy and provided with the information to charge and mail me the medications. I took a couple of couple of the supplements last night.

Maybe it was my imagination, but I felt a tiny speck of a bit more alert yesterday afternoon. Today, same thing, although it did not translate to me feeling well-rested. Dr. D said it would take at least a couple of weeks to start feeling better. In the meantime, I am going to get another round of blood tests next week and then see him after the new year for a follow-up.

Dr. D said that he’s helped other patients and he can help me. I told him that if that were the case that I would be floating into his office the next time I saw him.

Wish me luck!

Weather, Curcumin, Exercise, and Fibromyalgia

Despite some stress with my mom’s health issues in August, I managed to get to the beach a couple of times. That put me in a better mood. I think the summer does that to me, specifically, being at the beach, riding the waves, and relaxing to the sounds of the waves. One weekend, my husband and I biked about 10 miles along the Wantagh Parkway, which hugs the shoreline of Jones Beach.

Before we moved to NY, I had a number of conversations with my physiotherapist about the benefits of turmeric in the pain management of fibromyalgia, a syndrome that I have. For those who don’t know, fibromyalgia is a syndrome, not a medical diagnosis, because a cluster of symptoms appear for which there are no known causes or diagnostic tests. WedMD has a pretty comprehensive list of fibromyalgia symptoms.

I am not a big fan of turmeric, so adding it to my food presented a problem. At a local natural foods store, I came across a supplement called CuraMed by Terry Naturally. The supplement claimed to have 750mg of a clinically studied element of turmeric called curcumin (BCM-95). They also make a less potent version called CuraMin. I started that first and noticed a slight reduction in pain. After finishing a bottle, I let some time lapse, and then decided to try again, this time with CuraMed.

Sometime in the middle of August, I got a call from my gym, LA Fitness in Lake Success to come in for a fitness test that came as part of the gym membership I bought in February. Since I paid for it, I decided to go in. I should have known it’s an in to a sales pitch to buy a training package. Once I got there, I was hustled along to the manager, JM, with some serious sales skills! Even when I knew what was going on, there was a part of me that wanted to say yes. I ended up putting him off for a day to talk to Mark about it, but I signed up for a package. IU figured that, if I’m going to be in pain, it might as well be from trying to get healthy with exercise instead of just the same old same old fibro pain.

That was a month ago. Since then I have been going to the gym four days a week, twice to do weights (one with a trainer) and twice for some other reason – yoga or other classes). Today I went in and rode a bike for about 40 minutes, just to do something different.

I looked back on this last month and realized a few things:

  • The CuraMed supplement has eased off my depression. Whether it’s because it’s acting as an enhancer to the generic Cymbalta I am taking or because it is actually working on some level as pain relief on my fibro, I have no clue. I am actually still in a bunch of pain, but my mood has improved significantly.
  • I have experienced elements of euphoria after exercising which is more than just exercise itself. I know what it feels like to have endorphins rush through your system after a good work-out. This seems to be almost a bit of a mania. Tonight, I got home after a workout and danced around while I made dinner, and then had some champagne with my husband to celebrate our one year anniversary of our move to NY and my one year anniversary of my Master’s graduation.
  • That I can probably talk to my doc about coming down on the dose of my generic Cymbalta. I went on it because it was reported to help with sleep for fibro patients. The days I exercise I sleep much more soundly than when I don’t, which is at least 4 days a week.

All in all, I have been feeling  better despite the marginal improvement in pain. All I can do is keep on hoping that, one day, things will come together and I will cease to be in chronic pain every day that interferes with my life as it does now and has done for years.