Doctor with Fibromyalgia Wishes People Understood

Reblogged from Weekly AmericaI'm A Doctor With Fibromyalgia. Here's What I Wish People Understood About It Hero Image

Fibromyalgia, a widely misunderstood illness, confuses and frustrates both patients and doctors alike. I know because I’ve seen it from both sides—as both a physician and a woman with the illness myself.

This common chronic disease is characterized by widespread muscle pain, fatigue, and brain fog. It’s estimated that 5 million Americans currently suffer from the disorder, and close to 90 percent of those diagnosed are women.

Still, there remains a lot of confusion about what the illness really is and how it’s treated. Here are five truths about fibromyalgia that are not widely known, even by most doctors:

1. Fibromyalgia is real and can be treated—but it requires a holistic approach.

Research on fibromyalgia has lagged far behind other diseases, bogged down by controversy and a century of arguments about whether it’s a “real” illness.

This changed in 2002, when a groundbreaking study showed abnormalities in how the brain processes pain in fibromyalgia. These brain-imaging studies gave the objective data to prove fibromyalgia was “real” and triggered a decade of intensive research resulting in three drugs approved by the FDA that dull pain signals.

Fibro fogBut those medications don’t treat the often more debilitating symptoms of fatigue and fuzzy thinking called “fibrofog.” To do that, doctors and patients have to be knowledgeable about different treatment options—especially holistic approaches such as making dietary changes to reduce inflammation or adding supplements to boost cellular energy production.

2. It’s no longer a complete mystery.

I often hear the myth repeated that “we don’t know what causes fibromyalgia.” Recent physician surveys reveal that most doctors still don’t know how to help their fibromyalgia patients—in spite of the existence of some very effective treatments. Fibromyalgia is often described in medical journals as “perplexing,” “mysterious,” and “confusing.”

The TV commercials that say fibromyalgia is a condition of hyperactive pain nerves don’t tell the whole story. In fact, pain-processing problems are only the tip of the iceberg. A much bigger factor is a stress (or danger) response that has gone haywire and is constantly on “red alert,” leading to a chain reaction that results in fatigue, brain fog, and muscle pain.

The only way to get lasting improvement in all of these symptoms is to systematically address the negative effects on the body of a chronic hyperactive stress response. A chronically activated stress response wreaks havoc by preventing deep sleep and keeping muscles tense, leading to pain and tenderness; impairing digestion and energy production; and throwing hormones out of balance. It also ultimately causes the pain-sensing nerves to increase the volume of their signals.

3. Fibromyalgia is primarily a sleep disorder.

Unfortunately, many doctors, even sleep specialists, are not aware of the sleep issues that come with fibromyalgia. But fibromyalgia is in many ways a sleep disorder, a state of chronic deep sleep deprivation. Studies have demonstrated over and over that patients experience inadequate deep sleep that is frequently interrupted by “wakeful” brain waves. This deep-sleep starvation contributes to the fatigue, muscle pain, and foggy thinking characteristic of the condition.

121. rise and shineTreating sleep is the key to treating fibromyalgia, and it’s where I see the most benefit in reducing pain, fatigue, and brain fog. Sleep must always be improved before any other treatment will work, so it’s vital to address this with your health care provider to treat hidden sleep problems like obstructive sleep apnea and then add medications and supplements to help restore normal deep sleep.

4. Most doctors don’t know much about fibromyalgia—and it’s not their fault.

315. internet connectionFibromyalgia is an orphan disease that is not claimed by any specialty and instead awkwardly straddles the fields of rheumatology, neurology, sleep, and pain medicine. The majority of care falls to overwhelmed primary care doctors who don’t have time to go searching for new treatment ideas among the sea of medical publications. The big medical journals neglect fibromyalgia. In fact, since 1987, only one fibromyalgia study has been published in the New England Journal of Medicine, the most widely read medical publication in the world.

Since the busy primary care provider does not have time to actively search out new treatments for fibromyalgia, research has to be brought to their attention in some other way—namely by their patients. So in my new book, The FibroManual, I included a health care provider guide with research-supported medical guidance for patients to bring to their doctor’s attention.

5. There is no cure for fibromyalgia, but there are effective treatments.

There is no cure for fibromyalgia—yet. But we don’t have cures for many chronic illnesses, like diabetes and high blood pressure. What we do have are effective treatments that manage those diseases well enough that they are minimally detrimental to one’s health. And powerful treatments for fibromyalgia are out there as well.

When people ask me if I have recovered from fibromyalgia, I say, “Yes.” I’ve found ways to feel much better and minimize its impact on my life. Ultimately, I do still have fibromyalgia, and there is no magic bullet that completely eliminates all symptoms. It requires work, and I have learned that consistency in my self-care routine is essential to keeping my symptoms under control.

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Pain Pill Mistakes that may lead to a Ketamine Infusion

As regular readers know, about 3 weeks ago, I had a ketamine infusion. Part of the reason for this was I was addicted to codeine-based painkillers. I was unable to go cold-turkey and undertook the infusion to avoid all those horrible withdrawal symptoms.

Basically, this addiction came about because I made some pretty common pain pill mistakes.

Mistake No.1: If 1 Is Good, 2 Must Be Better

Doctors prescribe pain pills at the doses they believe will offer the greatest benefit at the least risk. Doubling or tripling that dose won’t speed relief. But it can easily speed the onset of harmful side effects.

“The first dose of a pain medication may not work in five minutes the way you want. But this does not mean you should take five more,” Kristen A. Binaso, RPh, spokeswoman for the American Pharmacists Association, says. “With some pain drugs, if you take additional doses, it makes the first dose not work as well. And with others, you end up in the emergency room.”

If you’ve given your pain medication time to work, and it still does not control your pain, don’t double down. See your doctor about why you’re still hurting (and, hopefully, there is something that will help more).

pills“This ‘one is good so two must be better’ thing is a common problem,” says pain specialist Eric R. Haynes, MD, founder of Comprehensive Pain Management Partners in Trinity, Fla. “Patients should follow the instructions their doctor gives. Ask before leaving the office: Can I take an extra pill if I still hurt? What is the upper limit for this medication?”

Another bad idea is trying to boost the effect of one kind of pain pill by taking another.

“There may be Advil, Tylenol, Aleve, and ibuprofen in the house, and a person may take them all,” Binaso says.

This can escalate into a very bad situation, Haynes says – welcome to a fast-forward approach to end up with a cannula in your arm and a week worth of ketamine!

Mistake No. 2: Duplication Overdose

People often take over-the-counter pain drugs – and even prescription pain drugs – without reading the label. Never a good idea – it means that you often don’t know which drugs you’re taking.

And if you take another over-the-counter drug – for any reason – you could wind up in a hospital ER with an overdose. That’s because many OTC drugs are combination pills that carry a full dose of pain pill ingredients.

Mistake No. 3: Drinking While Taking Pain Drugs

Pain medications and alcohol generally enhance each other’s effect. That’s why many of these prescription medications carry a “no alcohol” sticker.

“A common misperception is people see that sticker and think, ‘I’m OK as long as I don’t drink liquor – I can have a beer.’ But no alcohol means no alcohol,” Binaso says.

“The patient should heed that alcohol warning, because it can be a major problem if they do not,” Haynes says. “Alcohol can make you inebriated, and some pain medications can make you have that feeling as well. You can easily get yourself into trouble.”

Drinking alcohol can be a problem even with over-the-counter pain drugs.

Mistake No. 4: Drug Interactions

PILLSBefore taking any pain pill, think about what other medicines, herbal remedies, and supplements you are taking. Some of these drugs and supplements may interact with pain medications or increase the risk of side effects.

I suggest you try a drug interaction checker, if in doubt; and/or keep an updated list of your medications on your phone or computer so you can give your doctor a complete list of all the drugs, herbs, and supplements you take – before getting any prescription.

If buying over-the-counter medications, Binaso recommends showing a list of everything else you’re taking to the pharmacist.

Mistake No. 5: Drugged Driving

Pain medications can make you drowsy. Different people react differently to different drugs.

“How I react to a pain medication is different from how you react,” Binaso says. “It may not make me drowsy, but may make you drowsy. So I recommend trying it at home first, and see how you feel. Don’t take two pills and go out driving.”

Mistake No. 6: Sharing Prescription Medicines

Unfortunately, it’s very common for people to share prescription medications with friends, relatives, and co-workers. Not smart, Haynes and Binaso say – particularly when it comes to pain medications.

“If a fairly healthy person is taking a medicine because she is in pain, and wants to give some pills to Uncle Joe because he is hurting – well, this is a potential problem,” Haynes says. “Uncle Joe may have a problem that keeps his body from eliminating the drug, or he may have an allergic reaction, or the drug may interact with a medication he is taking, with life-threatening results.”

Mistake No. 7: Not Talking to the Pharmacist

22. pillIt’s not easy to read drug labels, even if you can make out the small print. If you have a question about either a prescription or OTC drug, ask the pharmacist.

“That’s why I’m in the store,” Binaso says. “You may have to wait a couple of minutes for me to finish what I’m doing. But you’ll get the information you need to take the right medicine the right way. Just say, ‘Tell me about this medicine; what should I be on the lookout for?'”

Mistake No. 8: Hoarding Dead Drugs

Pills stored at home start breaking down soon after their expiration date. That’s especially true of drugs kept in the moist environment of the bathroom medicine cabinet.

“People say, “That drug is only a year past its expiration date; isn’t it good?” But if you take a pill that’s broken down, it may not work – or you may end up in the emergency room because of reaction to a breakdown product. That is really common,” Binaso says.

Another reason that it’s dangerous to hoard is that the drugs may tempt someone else (your son or daughter?) into making a very bad choice.

Mistake No. 9: Breaking Unbreakable Pills

Pills are actually little drug-delivery machines. They don’t work the way they’re supposed to when taken apart the wrong way.

“Scored pills should be cut only across the line,” Binaso says. Those without scoring should not be cut at all, unless you’re specifically instructed to do so.

“When you start chopping up pills like that, the pill may not work,” she says. “We find more and more people are doing this. And then they say, “Oh, that pill had a really bad taste. That is because they cut away the coating.”

Take Control!

Mommy came to the doctor with me today – actually she comes to every doctors’ appointment with me. It’s very helpful having her there: she remembers to tell the doctor things that I forget; she remembers things the doctors say that I forget; and when I’m just too tired, she can tell the doctor everything that needs to be said.

(Mind you, today, I was VERY vocal: I asked Dr B his age & if he was married! He is…but, hey! a girl’s gotta try!)

We often lose our voice, when we are tired and not feeling good – and instead let other people take control. I know how easy it is to let that happen – I let Mommy take control a lot of the time. Sometimes, it’s just easier.

It is difficult to cope with doctors, specialists, alternative health practitioners, boyfriends/girlfriends/spouses, parents, bloggers, employers (if you’re still working), etc. Everyone has an idea of how or what you should be doing. Guess what people, they don’t know everything. No one knows you better than you.

It’s not easy to get back some independence, when we have let others take on what we should be able to do for ourselves. You CAN speak up.

If you are troubled with how you are being treated, you CAN say so. Tired of taking drugs that aren’t helping? You CAN say no to them (and your doctor). Your boyfriend thinks you are being lazy? You CAN tell him he is wrong. Your parents think you are ‘just depressed’ – you CAN say ‘no, please listen to me’ (whether they listen to you is another thing, though).

So, how do you start taking back control? Firstly, start saying no to the things that aren’t working in your life. When the stressors, depressors, and all round toxic forces have been eliminated (or at least reduced)….then you can return to ‘yes.’

So what will you say ‘no’ to today?