Congratulations! You Have Fibromyalgia.

While this is not exactly what you want to hear, since you hurt all over and probably don’t remember the last time you had a good night’s sleep, in a way you have been given a gift. Many people can go years – even decades – suffering through irritating and sometimes debilitating symptoms, insensitive doctors, invasive tests, and buckets of money without  finding out what’s wrong with them. But you have information. And that’s power.

So now what?

Unfortunately, very few MDs will have answers for you, except to write a prescription. More discouraging, “fibromites” (a commonly used term for those of us with FM) may respond in unexpected ways to drugs. So it could take a while before you find a medication – or a grouping of medications – that work for you, with side effects that you can endure. Or, you may decide to forgo the medication route. Whichever way you choose, like nearly everyone who learns to make peace with FM, you will have to become your own expert. And that’s another gift, if you choose to look at it that way. Many people can go a lifetime without the simple awareness of what’s going on in their bodies and how to take good care of themselves. You get to learn on the job.

As for your doctor’s job, he or she will probably start by treating your most pressing symptoms. This is usually pain or sleep problems. Chronic pain can impair your ability to function. It’s also exhausting. Imagine hurting so much that you can’t drive your kids to their soccer games, or have to miss out on hobbies that you once loved. It’s important to get that function back so you can rejoin the world of the living, which is important to your mental health. And also, some studies show that left untreated, chronic pain may lead to a kind of rewiring of your brain so that you always feel that pain.

If over-the-counter drugs like aspirin, Tylenol or Advil don’t do it for you, your doctor might give you an RX for a prescription NSAID (nonsteroidal anti-inflammatory drug) like Mobic or naproxen. Or you could be given Lyrica, a relatively new drug that has helped a lot of people. As for stronger drugs, like Vicodin or OxyContin, many doctors are leery about prescribing these. Some state laws require lots of paperwork for this class of drugs, and some doctors have an ungrounded fear that you will become an addict. But if you are in severe or debilitating pain, he or she might give you a small dose, at least until your flare eases.

Sleep deprivation can be a bigger problem than pain. Not only can long-term sleep deprivation damage your body (the very least of which is weight gain from increased cortisol levels), if you get behind the wheel of your car, you become a weapon.

Common prescription sleep medications are Ambien and Lunesta. They have less risk of dependency than other sleep medications, but when you stop taking them, you may go through a short period of what is called “rebound insomnia.” Doctors also may prescribe a small dosage of an antidepressant. This is not because he or she thinks you’re depressed. The theory is that at a small dosage, these drugs increase the amount of serotonin in your brain, which promotes sleep. The most commonly prescribed antidepressants for fibromyalgia are Elavil, Cymbalta and Pamelor.  This class of antidepressants may also help reduce pain.

At this point you might be thinking, “What if I don’t want to take all these drugs?”

You don’t have to.

Many people, myself included, have gotten tremendous relief from fibromyalgia symptoms by using alternative therapies like gentle massage and acupuncture. But often it takes a long time for these to work. If you’ve got serious symptoms, you may want to try a couple of medications first to see if they bring you any immediate relief while you are exploring other options. You don’t want to mess around with extended sleep-deprivation.

You can also make some changes in your lifestyle that may improve your symptoms:

1. Start a gentle exercise routine. Many people with FM find relief from gentle walking or swimming, preferably if the water in the pool is warm. Start very slowly; stop before you get exhausted. This is a hard lesson to learn, and it may take you a while, but it’s extremely valuable to learn your limits so you won’t make your symptoms worse.

2. Improve your diet. Reduce or eliminate sugar, caffeine, and processed foods. Some chemicals like MSG and aspartame are thought to aggravate fibromyalgia symptoms. You don’t have to do anything extreme – just strive for a good, balanced diet with lots of fruits and vegetables, whole grains, low-fat quality protein, and enough water to keep you well hydrated.

3. If you smoke, quit. Nicotine narrows blood vessels, and you need as much blood flowing throughout your body as you can get.

4. Find a stress-buster that works for you. Some people find that deep breathing or meditation helps; also consider asking for help in some of your daily tasks so you don’t stress yourself out trying to do too much.

5. Get a support system. If your significant other is not supportive, look for a sympathetic soul in another family member, friend, or support group, either in person or online. Often you can find one by asking your doctor.

Whatever methods you want to try, learn all you can about them first. If you’re taking medication, ask about side effects. Often, the best source is your doctor’s nurse, physician’s assistant, or even your pharmacist. Ask about interactions with other medications, foods, or supplements. Ask which side effects may fade over time, and what you can do about them. Some drugs take longer to work; ask how long it will be before you can expect relief. And ask what happens when you go off  the drug. Some require a slow “weaning,” while others can be simply dropped with no withdrawal symptoms. If you go alternative, make sure your practitioners are licensed.

No matter where you seek help, always remember that you are in charge. Not the practitioner. You are essentially hiring this person to help you. If at any time you feel that he or she is not taking you or your symptoms seriously, or worse, doesn’t believe that fibromyalgia exists, then you have the right to “fire” that person and go somewhere else.

This is your first step toward taking charge of your health. For now, and for the rest of your life.

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