Got Fibro? Now What?

Ok, you have a diagnosis…now what’s going to happen?

ae78c7c2bc0e5642e361bf001c101af9Most likely, your doctor is going to give you medication. There are many different medications used to manage FM, including pain medicines, sleeping pills, and antidepressants.  Some help ease pain. Others boost mood and improve sleep. Working with your doctor will help you find the right medication to add to your multi-faceted comprehensive treatment regimen. That way, you can begin to manage your symptoms effectively…

The first medication doctors will often try is an anti-depressant (this does NOT mean you are necessarily suffering from depression!), which helps relieve pain, fatigue, and sleep problems. Nonetheless, depression is commonly seen in people with FM.

Older anti-depressants, called tricyclics (including Elavil (amitriptyline) and Pamelor (nortriptyline)), have been used for many years to treat FM. They work by raising the levels of chemicals (neurotransmitters) in the brain.

Tricyclic anti-depressants increase levels of serotonin and norepinephrine in the brain. People with chronic pain often have decreased levels of these calming neurotransmitters. Tricyclics can relax painful muscles and heighten the effects of endorphins – the body’s natural painkillers. While these medications are often very effective, the side effects can sometimes make them difficult to take as they may cause drowsiness, dizziness, dry mouth, dry eyes, and constipation.

There are numerous types of anti-depressants and several of them have been shown to help relieve the pain, fatigue, and sleep problems in people with FM.

pillsThe most well-studied anti-depressants for FM include Cymbalta (duloxetine), Savella (milnacipran), and Effexor (venlafaxine). Cymbalta and Savella are specifically FDA-approved to treat FM. There is less medical research to show that Effexor helps FM. Other anti-depressants that have also been studied for FM and may help include Prozac (fluoxetine), Paxil (paroxetine), and Celexa (citalopram).

That’s a lot of different choices to work through and yes, it’s all trial and error to see what works for you. What works for one person with FM may not work for someone else. Different anti-depressants work differently in the body. That’s why you may have to try more than one anti-depressant to find the one that best relieves the pain, fatigue, and sleep difficulties. Your doctor may even want you to try a combination of more than one anti-depressant at a time.

Then, there are different types of pain relievers, sometimes recommended to ease the deep muscle pain and trigger-point pain that comes with FM. The problem is these pain relievers don’t work the same for everyone, either.

article-new_ehow_images_a05_sc_bu_can-nexium_-800x800Non-steroidal anti-inflammatory drugs (NSAIDs), when taken alone, don’t typically work that well for FM. However, when combined with other medications, NSAIDs often do help. NSAIDs are available over the counter and include drugs such as aspirin, ibuprofen, and naproxen. Further, the over-the-counter pain reliever acetaminophen elevates the pain threshold so you perceive less pain. Acetaminophen is relatively free of side effects. But avoid this medication if you have liver disease.

You also need to be careful taking aspirin or other NSAIDs if you have stomach problems. These medications can lead to heartburn, nausea or vomiting, stomach ulcers, and stomach bleeding. Don’t ever take over-the-counter NSAIDs for more than 10 days without checking with your doctor. Taking them for a prolonged period increases the chance of serious side effects.

Sometimes, your doctor will prescribe the muscle relaxant cyclobenzaprine. has proved useful for the treatment of FM. It has proved to be helpful with easing muscle tension and improving sleep. Muscle relaxants work in the brain to relax muscles; but you may experience dry mouth, dizziness, drowsiness, blurred vision, clumsiness, unsteadiness, and change in the colour of your urine. These medications may increase the likelihood of seizures, confusion and hallucinations.

Most recently, Lyrica, originally used to treat seizures, is being used to treat FM. Lyrica affects chemicals in the brain that send pain signals across the nervous system. So it reduces pain and fatigue and improves sleep.

Neurontin (gabapentin) is another anti-seizure medication that has also been shown to improve FM symptoms.

SMFM-278Other medications include pain relievers such as Ultram (tramadol) which is a narcotic-like medication that acts in the brain to affect the sensation of pain. However, it is not as addictive as narcotics.

In addition, doctors may prescribe benzodiazepines such as Ativan (lorazepam), Klonopin (clonazepam), Valium (diazepam), and Xanax (alprazolam) to help relax painful muscles, improve sleep, and relieve symptoms of restless legs syndrome. Benzodiazepines are addictive and must be used with caution on a short-term basis. Taking more than recommended increases the risk of serious side effects, including death.

Powerful narcotic medications, such as Percocet and OxyContin (oxycodone) and Vicodin and Lortab (hydrocodone), should only be considered if all other drugs and alternative therapies have been exhausted and there is no relief.

All of this seems quite daunting which is why you need to surround yourself with a team you trust, which may include doctors, friends and/or family. The most consistent treatment advice that all the experts in FM try to promote is a multi-faceted approach. So, as well as all these medications, you will need to explore a whole range of complementary treatments.

FCKI don’t mean to scare you; in fact, I am trying to help by blogging about research and my experiences with different activities (please explore the site). There is also a directory of other FM bloggers that allows you to find people who are going through the same stuff as you.


There is much debate about both the usefulness and safety of opioids as a medication for FM sufferers. Many health care professionals and researchers feel that there is little evidence that opioids actually provide significant pain relief for those suffering with FM. Others are concerned about the potential for tolerance and addiction associated with long-term opioid use. Yet, many of us find that opioids are highly effective pain relievers, and work to relieve persistent symptoms of widespread pain and muscle stiffness.

What are Opioids?
field-of-poppiesOpioids are a class of drug used to relieve symptoms of severe pain. More commonly known as narcotics, opioids are named after opium, a product found inside of the opium poppy plant. Natural opium has been used for hundreds of years to treat symptoms of severe pain and illness. Some opioids are made from this natural opium, while others are made synthetically from different chemicals.

Most of us associate opioids with the treatment of acute pain, like when you get your wisdom teeth pulled at your dentist’s office. However, opioids can also be used on a regular basis to treat chronic pain. Some types of opioids used to treat FM include:

  • oxycodone
  • morphine
  • fentanyl

Do Opioids Help to Relieve Fibromyalgia Pain?
opioidsThe efficacy of opioids in FM pain relief is one of the key components to the controversy surrounding opioid use. Though patients claim that opioids provide them with significant symptom relief, some health care providers disagree. There is some research that shows that opioids are indeed helpful for relieving FM pain. A recent study performed on long-acting opioids, including oxycodone, showed that FM sufferers gained great relief from long-term use of opioids. Users reported a 38% average reduction in pain symptoms and also experienced:

  • fewer sleep disturbances
  • less anxiety and depression
  • increased mobility and enjoyment of life

However, another study published discourages long-term use of opioids for treating FM pain. In a review of charts at a multidisciplinary FM clinic, researchers found that 32% of patients were taking opioids (i.e., Vicodin, Percocet, OxyContin,) with more than 2/3 of them on strong ones.

Researchers identified several characteristics that made people more likely to be on long-term opioids: lower education, unemployment, being on disability, current unstable psychiatric disorder, history of substance abuse and prior suicide attempts. They also say they “observed negative health and psychosocial status in patients using opioids.”

The paper supports the current medical opinion discouraging opioid use in fibromyalgia and concludes that prolonged use requires evaluation.

It is very common to hear doctors say that these drugs are ineffective in FM, but so far there is very little (and differing) research to go on. The patient community is divided, with some saying they don’t work and others saying they’re the only drugs that do anything. Response to opioids is variable.

Then the issues of abuse and addiction further complicate the matter, especially with doctors afraid of serious legal consequences for what may be considered improper prescribing.

Do Opioids Cause Addiction?
Despite their effectiveness, many patients and health care providers are concerned about the possibilities that opioids may cause tolerance, addiction and physical dependence in patients. Three major medical societies, the American Academy of Pain Medicine (AAPM), the American Pain Society (APS), and the American Society of Addiction Medicine (ASAM) have issued a joint consensus paper which clearly defines the frequently misunderstood terms addiction, tolerance,and physical dependence, and discusses their definitions in the context of opioid use in the treatment of pain.

“The addiction community was concerned because of inaccurate diagnosis. The pain community was concerned about over-diagnosis of addiction when it didn’t exist, and how this misdiagnosis interfered with treatment with opioids,”  said Edward Covington, MD, Director of the Chronic Pain Rehabilitation Program at the Cleveland Clinic and past president of AAPM, who was one of the paper’s authors. “Also we needed agreement about what is and what is not an addictive disorder.”

Tolerance: Tolerance is actually a typical response to any type of medical intervention. After about two weeks on a medication your body becomes “used to it,” and side effects caused by the medication begin to disappear. Opioid tolerance typically manifests as the disappearance of nausea and other side effects. However, some patients do notice that they begin to develop a tolerance to the pain relief provided by opioids. This does not always indicate that your body is becoming addicted to the medication. Other factors, such as muscle injury and central nervous system activity must also be taken into consideration. Also, tolerance is not the same thing as addiction –  it simply means that you may require a slight increase in the dosage of the opioid you are taking in order to gain the maximum benefits.

Physical dependence and tolerance are often confused with addiction.

Addiction: Addiction is a more worrying side effect of opioid usage. Dr. Covington noted that addiction is a primary, chronic, neurobiological disease that can be identified by the three “Cs” Craving or Compulsive use, loss of Control, and use despite adverse Consequences. Other behaviors that signal addiction include “drug seeking” behavior, taking multiple doses of medications, and an inability to take them on schedule, “doctor shopping,” frequent reports of lost or stolen prescriptions, isolation from friends and family members, and taking pain medications for sedation, increased energy, or to get “high.”  This can result in a multitude of side effects, both physical and psychological.

However, less than 0.5% of chronic pain patients develop a real opioid addiction. In an evidence-based review for Pain Treatment Topics, editor Stewart B. Leavitt, MA, PhD, summarised the findings of major research investigations of 24 clinical studies: the overall rate of prescribed opioid analgesic abuse or addiction in patients with pain was about 3.3%. However, fewer than 2 out of 1,000 (0.19%) patients without a current or past substance-use disorder experienced problems with opioids prescribed for pain.

According to the consensus paper definitions, physical dependence and tolerance are both normal responses to regular use of some prescribed medications, including opioids, and are not in themselves evidence of an addictive disorder.

“Unlike tolerance and physical dependence, addiction is not a predictable effect of [taking] a drug but an adverse reaction in biologically and psycho-socially vulnerable individuals.

“It is also important for healthcare professionals to recognise the difference between true addiction and “pseudo-addiction,” notes Albert Ray, MD, President of AAPM.

neck-pain-made-worse-by-pain-medicationsWith pseudo-addiction, patients whose pain is under-treated appear to behave “like addicts” to get the pain relief they need. They may focus on getting more medication, for example, and appear to be engaging in drug-seeking behavior. But unlike a person with a true addictive disorder, however, once their pain is properly managed, these behaviors stop immediately.”

Withdrawal: Opioid use has also been debated because of the withdrawal symptoms that they often cause. Even patients that are not addicted to an opioid will likely experience disturbing withdrawal symptoms when they stop taking the drug. To avoid serious withdrawal symptoms, opioid use should always be tapered off gradually. Symptoms of opioid withdrawal include:

  • yawning
  • diarrhea
  • goosebumps
  • runny nose
  • drug cravings
  • anxiety
  • insomnia

Most withdrawal symptoms should disappear within a week. However, symptoms of anxiety, insomnia, and craving may persist for a longer period of time.

This topic is worthy of further investigation and debate; however, the preponderance of available evidence suggests that establishing
medical policies or practices in pain management on a presumption of high rates of prescribed opioid-analgesic abuse or addiction could be misguided, resulting in added costs for healthcare delivery and the under-treatment of pain.

Healthcare providers should be reasonably assured that only a very small percentage of their patients with chronic pain, if any, will exhibit abuse/addiction when receiving long-term opioid analgesics. And, this would be especially so in those patients who have not experienced substance-misuse problems in the past.


The Accidental Addict

On Sunday, The Age had a couple of articles about opiods. This is an edited version (with my additions):

Narelle Caldwell had to wean herself off oxycodone and now uses meditation and exercise to help manage her pain. Photo: Brock Perks

At first, the opioid known as oxycodone worked like magic, dissolving the pain from a slipped disc between her shoulder blades almost instantly. But over the course of a few weeks, its power started to wear off. Fearful her pain would return, Caldwell started to watch the clock. She was counting down the minutes until she could take another pill.

”It completely took over my thinking,” she says. ”I couldn’t function without it. I was completely consumed by the fear of the pain and what it was going to do to me.”

The oxycodone gave her a pleasant feeling, too. Not a euphoric high, but a sense of relief and relaxation that made her feel a bit dopey. Caldwell tried to stick to the recommended times to take her pills, but as her tolerance grew, she couldn’t resist taking them more often. After two months of chasing her pain with various opioid formulas and other medications to offset their side effects, her boss suggested she do a three-week pain management course.

She agreed and when she got in, a doctor told her she had to come off the drugs so she could find other ways to manage her pain. It was going to be an uncomfortable ride, he said, because whether she liked it or not, she was already dependent and had to withdraw.

This is what happened with me at my pain treatment course, where I met with a physio, occupational therapist and a pain management doctor. The pain management doctor told me exactly the same thing; and I tried to quit straight after my Bali trip.

”It was amazing. When I stopped taking them, I went through the whole thing, I had night sweats, I couldn’t sleep, I was agitated and fidgety and I was having mood swings,” Caldwell says. ”It took about two weeks for the drug haze to lift.”

I was unable to last as long as Narelle.  I couldn’t handle the cold turkey, at all, and only lasted 2 days.

Since the course, Caldwell, 49, has stayed off opioids and now manages her pain with meditation and exercise, among other things. She says her short time on oxycodone introduced her to the intense pull of addiction. She can see how some get lost forever.

”I’m so glad I got into that program because if I didn’t, I would still be taking those drugs and wouldn’t have a life,” she says.

Caldwell, a well-educated woman who has never smoked, let alone taken illicit drugs regularly, is one of a growing number of Australians who have got hooked on opioid painkillers.

And that would be why I am having the ketamine/lignocaine infusion. Yes, now that the gallbladder operation is over, we’re onto the next hospital stay (good thing I only have to pay my hospital excess once per year!)

Prescription of the drugs, which were once reserved for acute pain such as broken bones or post-surgical wounds, has soared over the past two decades as doctors started thinking they were useful for chronic pain and degenerative conditions like arthritis. But the shift has had unintended consequences. Many patients are being given them for long periods of time, causing them to spiral into addiction or worse – overdose.

Wider availability of the drugs has also created a thriving black market. As drug companies started making them in every conceivable form – pills, patches, syrups, suppositories, nasal sprays, the list goes on – illicit drug users increasingly realised they, too, could use the drugs to get high.

Some doctors now believe elderly people – the group most commonly prescribed opioids – are selling their drugs or passing them on to demanding friends and relatives who are misusing them.

The phenomenon, known as fossil pharming, is worrying Adelaide pain specialist Dr Penny Briscoe, who says all Australian patients on opioids should be routinely drug tested to make sure they are actually taking their drugs.

”People are saying they are getting them out of their grandmothers’ cupboards and we’ve had one palliative care patient admit to selling them to supplement his income – so diversion is occurring, we just don’t know how common it is,” she says.

Aside from concerns about diversion, doctors have very good reason to closely monitor their patients’ opioid use. Accidental and intentional overdose deaths are mounting, and many are being reviewed by coroners who are asking what went wrong. In most cases, the deceased have mixed their drugs with alcohol or other medications, causing respiratory failure or aspiration – the inhalation of saliva, food or other liquids into their lungs.

While some people can function well on opioids for a long time, says Head of addiction medicine at Melbourne’s Western Hospital, Dr Mike McDonough, the painkillers are turning some ordinary people with no history of substance abuse into addicts. In some specialist pain clinics, he says these people are sharing tips in waiting rooms about how to crush their tablets and inject them because their doctors are not giving them enough to satisfy their need. ”These are people who would have never imagined themselves injecting drugs.”

McDonough says doctors and governments are now debating ways of limiting supply of the drugs to reduce harm in a way that does not deny doctors reasonable access to them to treat pain. While opioids have their place, he says GPs need to know there is no evidence supporting their long-term use for chronic pain.

”These people still need care, so GPs can’t shut their doors to them but they also need to know when they’re doing more harm than good … We need to give GPs the tools to manage these people because the numbers are only going to get more difficult.”

And this is very important – we still need some sort of help for our FM pain. However, one of the BIG problems is:

”As a GP, I can earn more money treating someone for a cold than treating someone for an opiate addiction, so the economics are against it,” Adelaide-based GP and addiction medicine specialist Dr Philip Crowley says. ”These people are complicated patients as well, they take time and they are high risk. If something goes wrong, they can die.”

Associate Professor Milton Cohen, a pain specialist at St Vincent’s Hospital in Sydney who recently worked on new opioid prescribing guidelines for the Australian and New Zealand College of Anaesthetists Faculty of Pain Medicine, says about one in five Australians has chronic pain – consistent daily pain that lasts for three months or more – and that only about half of them find opioids useful for pain management.

”Having chronic pain is already quite stigmatising. People are called bludgers or accused of putting it on and now, if they’re being prescribed these drugs, they are presumed to be addicts,” he says. ”Opioids are not the be all and end all, but if they’re used properly they can improve people’s quality of life.

”We’re interested in the quality use of opioids, using them for the right person at the right dose and for the right time, so if this is getting out of hand we need to be able to track it.”

Narelle Caldwell backs the call for action. In particular, she says the government should boost specialist pain management services so people can learn to manage pain without drugs sooner rather than later.

I agree with Narelle – we need appropriate pain management services. Stop just throwing drugs at us, and help us feel better NOW!


Let’s Talk About Poo!

Back in early April, I made a quick reference to poo. Now that I’m on stronger pain killers, it may be time to revisit the discussion…

poo-2Most of us who live with FM also have Irritable Bowel Syndrome (IBS). FM and IBS are co-diagnosed in up to 70% of FM patients. IBS (also known as irritable colon, spastic colon, mucous colitis, or spastic colitis) is a disorder of the bowel, or large intestine. It is characterized by severe abdominal pain and cramping, changes in bowel movements, and a variety of other symptoms.

It has been estimated that as many as two-thirds of all IBS patients have FM, and as many as 70% of FM patients may also have IBS. These statistics differ greatly from the corresponding rates in the general population, where only 10%-15% of individuals are estimated to have IBS. It is unknown if the two conditions are related symptomatically or causally, or if their frequent co-occurrence is merely a coincidence.

Adding pain killers to the mix can be frustrating and painful.

Pain killers are used to combat headache, body ache, muscle pain, etc. Prescription painkillers including Vicodin, Darvocet, Percocet, OxyContin, Fentanyl, Tramadol and Lortab are widely prescribed to treat moderate to severe pain. At times (all the time?) we are forced to take painkillers due to too much pain. The opiate analgesics block pain signals by attaching to opiate receptors located in various parts of the body and brain. Prescription painkillers are effective treatments for chronic or persistent pain and can be taken safely, but these pain killers have side effects associated with them. Along with reducing pain, these pain killers also give rise to some other disorders as well.

bird_pooConstipation is a commonly reported effect associated with the use of prescription painkillers. Whether taking opiates at therapeutic levels or abusing them, many users report sluggish bowel movements, a condition which can be both annoying and painful. The problem can be compounded when we are taking a combination of prescription medications. Opiates can interfere with normal elimination by relaxing the smooth muscle in intestines and preventing them from contracting and expelling waste. With regular use of opiates, stools can become rock hard, blocking the bowels. In severe cases, bowels can rupture, leading to sepsis or death. Symptoms of constipation include: abdominal bloating, swelling and cramping; straining to pass stool; pain, discomfort or blood with a bowel movement; nausea; weight loss; and decreased appetite.

The use of a laxative or other form of stool softener is often suggested. Further, to prevent constipation, users must consume plenty of liquids when taking painkillers. Regular bowel movements could also be kept intact by consuming a diet rich in fibre. Mommy swears by prunes (yuck!) and a greasy, cheese pizza tends to work for me!

And, for the sake of completeness:

Mild and More Serious Side Effects

Even with short-term use, patients can experience one or more side effects. They can include sedation, euphoria, dizziness, fatigue, depression, tremors, sleeplessness, anxiousness, flu-like symptoms, upset stomach, dry mouth, pupil constriction, itching, hallucination, delirium, sweating, muscle and bone pain, confusion, extreme irritability and muscle spasms. Taking too much of an opiate medication, or more frequently than prescribed can be dangerous, even fatal. Combining opiates with alcohol and some other drugs can also lead to severe reactions. More serious side effects can include severe respiratory depression, confusion or stupor, coma, clammy skin, circulatory collapse and cardiac arrest.