Friday April 29, 2011
To find a good treatment regimen for fibromyalgia and chronic fatigue syndrome, it typically takes a lot of experimentation. On the path to discovering what does work, most of us find a lot of things that don't -- at least for us.
While we have some research on alternative treatments for these conditions, we don't have nearly enough. On top of that, a lot of it is contradictory or of low quality. That means it's especially important for us to compare notes so we can make better decisions about where to start.
What alternative treatments have you tried that didn't work? Take the poll, and leave your comments below!
Also see: Which Alternative Treatments Work for You?
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Thursday April 28, 2011
Anytime you're taking a narcotic pain reliever, for fibromyalgia or anything else, you have to put extra thought into certain things. Most of us learn the hard way that it can be tricky asking for refills, dosage increases or any kind of prescription from a new doctor.
Fair or not, the truth is that we live in a world where law enforcement officers, law makers and regulatory agencies are generally more concerned with narcotics abuse, overdose and theft than with proper use as a pain medication. Certainly, those are big problems -- I recently saw that narcotics overdose is a major cause of accidental death in the U.S. Simply having a prescription can make you a target for thieves. Pharmacies are regularly held up for their narcotics, especially OxyContin (oxycodone). Illegal online pharmacies do a brisk business. Heightened enforcement has put doctors under a microscope, fearful of losing their license and facing criminal charges as some of their colleagues have.
Because of that, legitimate pain patients have to jump through a lot of hoops to get their medications -- even though these pills are effective, inexpensive and completely appropriate for treating pain. People often make the argument that no one would require the same of a diabetic asking for insulin, and it's true, but the fact is that we have to deal with the rules and regulations in order to get the meds that help many of us function.
Many doctors are requiring a "pain contract" for anyone on narcotics. It's a signed agreement stating that you will use the medication as prescribed and abide by the rules of that particular practice. A lot of people are insulted when asked to sign a contract like this, and that's completely understandable. I remember the first time I had to take a drug test to get a job, and how the procedures at the clinic made me feel like a criminal. Being questioned about medication use summons those same feelings. What we need to keep in mind is that it's not personal. Although it may feel like it sometimes, the people creating and enforcing these regulations are not singling you out because they think you're a bad person.
What I've learned over the past several years is that a lot of problems can be avoided by clear communication with your doctor.
With injuries, I used to give it awhile before going to the doctor, to see if was going to get better on its own. That has lead me to run out of Vicodin (hydrocodone-acetaminophen) before I'm due for a refill. As you know, untreated pain can lead to desperation, and that's the last thing you want your doctor to see when trying to convince him or her you're not an addict! Now, I get in to have an injury checked earlier (yes, that means shelling out the co-pay, but I've realized if an injury requires narcotics it's probably serious enough to be looked at.) That way, I can let them know I'm taking more pills than usual and have them make a note in my chart that I may need an early refill. A couple of times, I've turned down the offer of an early refill. I'll never do that again!
If you're going to be out of town, be sure to talk to your doctor's office early about what that could mean for your pain prescription, as well as all your other meds. You don't want to run out while you're traveling, but it's also important to think about how much will be left when you get home -- because a post-trip crash is likely, you may not be up to running to the pharmacy right away.
It also helps to be open to alternatives. Listen to any ideas your doctor may have with an open mind, and be willing to try things that are scientifically sound and within your financial means. It'll not only foster a better relationship between, you might actually find a few things that work!
Whenever you're talking with your doctor (or nurse, pharmacist, etc.) about your pain medications, try to be professional. Treat it like a job interview. Keep your emotions in check, be sure you're not coming across as whiny and desperate, and let them know you understand why they have to follow certain policies.
Is this situation process frustrating, demeaning and infuriating at times? Absolutely. I wish we didn't have to deal with it, but we do.
I do need to add that the above advise comes from my experience with very good and caring medical workers, and not everyone has the luxury of dealing with that caliber of doctor's office. Some doctors and their staff will treat you like dirt simply because you have a narcotics prescription, no matter how much or how little you take, or how well you abide by their policies. If you're dealing with someplace like that, you should explore your options for going somewhere else. Easier said than done, I know, but it's worth looking around. No one deserves to be treated that way.
What problems have you faced when trying to get proper treatment for your pain? What has helped you avoid or overcome obstacles? Leave your comments below!
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Monday April 25, 2011
Time may heal all wounds, but what if you don't have enough time? That's a situation we all face, to one degree or another, when we have fibromyalgia or chronic fatigue syndrome.
Having had gallbladder surgery a week ago, the time it takes to heal is playing a major role in my life. Most people are back to work within 3-5 days following this particular surgery, but after 7 days I still can't drive a car. I'm still on pain meds every 4 hours, can't stand up straight, struggle to get up from laying down and can't lay on my side without major pain.
I was fortunate in one regard -- my husband was able to take a full week off from work. The surgeon was originally going to write the note for his employer suggesting 3 days, but when I explained that fibromyalgia slows down my healing, he upped that to a week. (It bears repeating -- I really love my medical clinic!) Now, that time is up and I'm not ready.
I can do the basics of taking care of myself, and my kids (having had a sick mom for several years) are very self sufficient. Still, I'm having to rely on my my husband's 81-year-old grandma to get them to school for the next couple of days. I definitely don't want to push myself too fast -- it would not only jeopardize my recovery, I concerned it could also bring fibromyalgia out of remission. I've worked hard to get where I am, and I don't want to risk going back down that steep slope.
Whether it's because of surgery, an injury, a passing illness or our chronic conditions, we all need to take time to heal. Our modern world works against us at every turn. Financial and familial pressures force us out of bed when we need to stay there, and our guilt feelings about being there in the first place certainly don't help.
I firmly believe that part of the reason for my remission is that I was able to take time to heal. While I had plenty to keep me busy (my kids were 4 and 1 when fibro hit), I was able to quit my full-time job and work from home. That allowed me a lot more freedom to rest and recuperate, especially once my kids were in school. I know not everyone has this option, but we each need to look at our own lives and see what we do have the power to change.
Life doesn't stop when we get sick, or hurt, or have surgery, but we do need to find ways to slow it down to a pace that allows our bodies to meander down the slow path of healing.
How have you slowed down your life? How much has it helped? Are you looking for ways to slow down? Leave your comments below!
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Saturday April 23, 2011
It's been four days since my gallbladder surgery. The doctor said "most people" need 3-5 days to be back up and around. It no surprise, then, that I'm nowhere near that recovered.
At the point when I should be about back to normal, I can finally get up from a chair on my own, go slowly up and down stairs, and lift my right arm nearly to shoulder height. However, I can't stand up straight, go more than 4 hours without pain meds, or lay on my side. My husband has to go back to work Monday, and I think that'll be too soon. I may need to arrange for someone to take my kids to school because I doubt I'll be able to drive.
Most of us with fibromyalgia, as well as those with chronic fatigue syndrome, are slow healers. Some researchers believe we have problems in the tiny building blocks of cells, called mitochondria, which leads to a slower process of cellular healing.
Even small scratches on my arms can take forever to heal, so the 5 small incisions on my abdomen still look fairly fresh. That's in spite of doing everything I can to promote healing.
In many ways, though, my recovery is atypical for a fibromite. It's definitely been a test of my remission.
Sure, I've had pain, and lots of it. However, it's all related to the surgery. I haven't gone back to fibro pain randomly bouncing around my abdomen, or the body-clenching all-over muscle spasms that I used to get when I was in a lot of pain. And while I've been mentally out of it due to fatigue and a much higher dose of pain meds than I'm used to, I haven't had true brain fog. I believe my remission is holding. We'll see if it can outlast my slow healing.
I've upped the supplements that can help with healing (lysine, carnitine, magnesium, vitamin D) and I'm making sure to get a lot of sleep. Fortunately, I'm sleeping a whole lot better than usual! I wouldn't mind if that stuck around for awhile.
Have you had surgery since fibromyalgia or chronic fatigue syndrome struck? How did it go? How long did it take for you to get "back to normal?" Leave your comments below!
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