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Archive for August, 2008

Another Neurontin or a real solution?

Lyrica: Another Neurontin or a real solution?

A few months following the FDA approval of Lyrica for the treatment of Fibromyalgia, I brought it up to my doctor at the time. He was eager to give a shot and even had samples for me to take home. He had said I might not feel any different right away and that we might have to play with the dosage.

A month later I got a job two states away. I was so carried away with finding a new house, figuring out how to get the husband, the puppy and a house full of stuff to Texas in two weeks that I wasn’t as focused on the Lyrica. I kept taking it at the low dosage my doctor in Arizona had prescribed. I didn’t notice a giant change.

When I found my current doctor, she was skeptical of Lyrica. She pointed out that it’s spendy for something we’re not sure is really going to do anything. She was more apt to try and get me to use Flexeril more often. (I still just use it case-by-case, because I’m stubborn.) So, I haven’t really given Lyrica a shot.

I have concerns, like a lot of people, about the “off label” use of drugs. Back 10 years ago, I was taking Neurontin coupled with an onslaught of others (the only one I’m still taking is Tramadol). Neurontin, like Lyrica, was a medicine designed for something else—in this case epilepsy. However, doctors were sure that using it with other pain medicine was the answer to decreasing Fibromyalgia patients’ pain levels. After about a year on Neurontin, I decided it wasn’t working. We had played with different medication variations, and I didn’t feel any different without it.

A few years later it’s discovered that the drug company Pfizer was bribing doctors, among other things, to convince them to prescribe Neurontin for off-label uses it knew wouldn’t work. The company ended up pleading guilty to two Federal felonies. Pfizer is the same company that is marketing Lyrica. Maybe it learned a lesson through Neurontin. The company has brought plenty of great drugs to the market, but it’s hard to shake the feeling that they may be preying on Fibromyalgia patients longing for a cure.

So, I am debating whether it’s time to talk to my doctor again about trying the medicine. I don’t think it will be some magic pill, but wonder if it may do something noticeable. Some people say blending Tramadol and Lyrica is a godsend, while others heavily warn against it. Some of the anecdotal evidence I’ve read about the drug says the swelling of appendages, particularly fingers, is not worth the degree of pain recession. I hope my doctor has some real answer to whether Lyrica can help. She’s been right before.

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I lucked out today and got my hands on a Wii Fit bundle (both the balance board and the video game). So, now I just have to follow through. No excuses, remember?

My husband is syncing it up as we speak. I think he may be more excited about me using it than I am. (Not sure what that means….)

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After a silly bout of Fibro fog earlier today, I found this item over at ButYouDontLookSick.com. The tips for dealing with call centers when you’re chronically ill look so commonplace and obvious, but during a foggy moment having things written down beforehand seems appropriate. Eliminating stress is always a good idea, right?

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No more excuses.

No more excuses for Fibro sufferers, we can get a decent low-impact workout with Wii Fit.

Web MD featured an article yesterday saying the same thing every rheumatologist, internist and general practice doctor with a Fibromyalgia patient has been saying for years: low-impact exercise can ease Fibro pain.

This, of course, is entirely true in my experience. A few years ago, I was very good about attending a yoga/Pilates class three times per week. Yes, I ached at first, but the more I did it, the better I felt. If FM flares up, exercising always seems to exacerbate, but as a preventative measure to all-out Fibro hell – exercise is effective.

Making exercise a priority can be hard, especially when we feel crummy all the time. (Remember seeing the word years in the last graf?) Finding excuses to postpone beginning an exercise routine, whether due to laziness or fear of the first few days of additional aching, is too easy. “I’m planning a wedding.” “We’re going to move soon.” “Work is crazy right now.” Now, we’re left without excuses, because our buddies at Nintendo are letting us work out at home.

Wii Fit for the fancy motion-sensing Wii video game system includes yoga. It will teach you the moves, and you can do it whenever without people giving you looks for making old lady “oofs” when getting up off or down onto your knees.

Wii Fit has a handful of fun games included and other exercise things (hula hoop, anyone?), so you can probably get the rest of the family or roommates involved, too. I haven’t started working out with the Wii Fit just yet (probably by the end of the week), but I will be sure to keep you all apprised of how it affects my FM

Note: Also, I suggest you all check out this video Newsweek’s health writer testing out Wii Fit. It’ll probably have you smiling.

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Seeing as it’s back-to-school time, Fibro Spot is out to focus on school stuff. So, this entry is a rarity: this one is for your mom. Being the parent of a kid with Fibromyalgia is surely just as painful as having the disease yourself, and I want to help you.

You already bought notebooks and pens, but now here are three things that can make school life easier for your son or daughter with Fibromyalgia.

The first one is obvious. Make the school accept that your child may need to take medicine throughout the day. This sounds simple, but often there are several hoops to jump through. Get a doctor’s note, and (provided your child is old enough) get permission for him or her to come take the medication as needed. This means if pain medication is waning early, she isn’t going to spend 20 minutes arguing with the school nurse that “You still have another half hour.” This makes life incredibly easier.

Next – and I swear if you tell your kid or my mom that I said this—sneak a granola bar or a pack of fruit snacks in her bag. Be sneaky, because we really hate this. However, taking medicine can lead to unhappy stomach, and having something there to calm it down is fantastic.

Finally, a voice recorder, digital if you can swing it. This one applies mostly to juniors and seniors in high school. Once you’re in classes with heavy notes, having the option to spare your forearms is a very good thing. Some recorders even come with software that can transcribe the audio for you.

If you can swing the extra cash for a digital model, it’ll be much appreciated. They’re slimmer and less conspicuous. Also, they’ll allow him/her to save the file to the computer and keep all the voice notes. Plus, the aforementioned fancy audio transcription element. (I don’t think it’s necessary at all.)

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The normal ways to get Vitamin D aren't cutting it.

The normal ways to get Vitamin D aren't cutting it.

Everyone gets the standard “vitamins are good for you” talk at their annual check-up, but this time around my doctor had a new idea. She wanted to run blood work just to make sure my Fibromyalgia wasn’t masking anything. (Make sure your doctors do this. Often we attribute new aches to chronic pain, when in actuality they may be from something else – think thyroid.) Anyway, in addition to the standard battery, she wanted to check my Vitamin D levels. Turns out, several of her other Fibro patients had low levels. Always looking for a solution, I let them run the additional test.

Sure enough, when the results came back my Vitamin D level was incredibly low*. Less than half of the low-end of normal. Eek. My doctor prescribed some heavy-duty Vitamin D supplements. Two months in, and I feel a difference. I don’t think I’m into the normal levels just yet, but I’ve noticed I can go longer between taking pain medication and I have more energy. My doctor has reported similar affects for her other patients. Other physicians have noted similar results.

There are plenty of reasons to fix low Vitamin D levels, including research saying you’ll die sooner. Perhaps there is a link between this deficiency and part of the Fibro pain? It has been linked to Osteoporosis, but more recent research finds the lack of Vitamin D connected to “unexplained muscle and bone pain.”

I’ve read a handful of articles where researchers and doctors surmise that this must be the cause of Fibromyalgia. I don’t buy that, but I could see it be a contributing or exacerbating factor.

Has anyone else tried the Vitamin D supplementation? If so, please share your experiences.

One quick note before ending: You can have too much Vitamin D. So, don’t go nuts with the stuff. Check in with your doctor and have him or her run a blood test. If you’re actually deficient, the over-the-counter stuff won’t make a considerable difference anyway. You don’t want to feel worse, do you?

* Just to make things clear to those of you thinking that I’m an anti-milk lady – I drink my organic vitamin D milk three times a week and have a silly affinity for Blue Bell ice cream. (Our freezer is always stocked.) Though, I am very fair skinned, so I don’t get my vitamins the ol’ fashioned way (the sun).

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The locations of the 18 Fibromyalgia trigger points.

The locations of the 18 Fibromyalgia trigger points.

While anyone suffering from chronic pain may connect with this blog, the heart of Fibro Spot is living with Fibromyalgia. One of the cornerstones of the syndrome is having a standardized collection of tender points on the body. To be diagnosed with Fibromyalgia a patient must exhibit tenderness at a minimum of 11 out of the 18 points, sometimes called trigger points. However, outside of the doctor’s office these areas of focused aching and pain are generally referred to as “Fibro spots.”

The spots on each of my forearms tend to flare up after a full day of typing at work (particularly on rainy days), and I find myself explaining to others – mostly my husband – that it’s not that my muscle is sore or tired, but that the nickel-sized Fibro spot is flaring up. It was much worse during high school on days of intense note-taking.

By telling people these trigger points are fibro spots, it can help make it clear that this pain isn’t the same as overworking a muscle. It is part of the overall condition that each Fibromyalgia sufferer deals with daily.

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