Where Have I Been?

So, I’ve been MIA (Missing In Action)…why?

I have been slowly weaning off my Lyrica (see posts below for previous updates) to see if we can find something else that will allow me to feel less pain but with less side effects.

dose last

And I have finally made it to Week 6…

No! I do not feel miraculously better – in fact, I feel horrible. I didn’t realise what the Lyrica had been protecting me from (although it didn’t feel like much at the time). Let’s work from the head down:

  • No respite from the permanent headache
  • Very lazy right eye
  • Cheekbones growing out of my face
  • (Even more) increased sound sensitivity
  • Everything smells pungeant
  • Sensitive teeth
  • Itchy face
  • Aching neck and shoulders
  • Swollen-feeling wrists and hands (without swelling)
  • Costochondritis
  • Stomach cramps
  • Acid reflux
  • Diarrhea (whether I eat or not!)
  • Taut calf muscles
  • Swollen-feeling ankles and feet (without swelling)
  • Inability to remain asleep
  • No inner temperature control

Sounds like everybody else, right? But it seems that the Lyrica had reduced the impact of some of that. I just hadn’t realised how much. But the Lyrica also brought complete and utter fog.

And now I’m back at square 1; ready to start again, in a couple of weeks, to see if we can find a more effective medication regime, that will still allow me to think like a normal person!

Related Reading:

Sampling Side Effects

So, you know when you walk into the doctor’s office and there’s a ton of pens with the logos of different drugs, calendars sponsored by Big Pharma, and samples galore?

Pharmaceutical-(sm)x300Because of these visual reminders and visits from company representatives, doctors are more likely to prescribe these drugs. However, these drug company salespeople provide family doctors with little or no information about the harmful effects of medicines they are promoting, states a new study.

And, despite this lack of knowledge, doctors are still likely to start prescribing these drugs, according to the findings from questionnaires completed by American, Canadian and French doctors.

The study revealed that the reps failed to provide information about common or serious side effects or warn doctors about types of patients who should not use the medicine in 59 per cent of their promotions.

“Laws in all three countries require sales representatives to provide information on harm as well as benefits,” lead author Barbara Mintzes, of the University of British Columbia, said in a university news release. “But no one is monitoring these visits and there are next to no sanctions for misleading or inaccurate promotion.”

Serious risks were mentioned in only 6 per cent of the promotions, even though 57 per cent of the medicines involved in these visits came with the strongest types of drug warnings.

“We are very concerned that doctors and patients are left in the dark and patient safety may be compromised,” Mintzes said.

So, remember doctors do NOT know everything…be your own advocate, do your own research and ask questions!

Are You Sleeping?


Do you get enough sleep?

This is what happens to your body if it’s deprived of sleep:

  • You have problems with memory and concentration.
  • You have problems finding the right word.
  • You get irritable – you think so?
  • Neurotransmitters in the brain become altered.
  • You become more susceptible to infection.
  • At its extreme, sleep deprivation can lead to death.

h1sciqsleepwalkingIt seems that no matter how many Ambiens (zolpidem) and Lunestas (eszopiclone) we take, we wake up feeling like shit (sorry – there is just no other word!): feeling hung over and inattentive. So much so that the FDA recently cut recommended doses of Ambien and other drugs that contain zolpidem for fear that their use, even the night before, might impair driving or other activities the next day.

This is because Lunesta and Ambien affect GABA receptors, which are found throughout the brain and are associated with side effects, including thinking disturbances, and deficits in attention and memory, explains Jason Uslaner, lead author of a study published in the April 3 issue of Science Translational Medicine.

A new study funded by Merck (of which Uslaner is director of In Vivo Pharmacology at Merck & Co.) has shown that a new class of sleep medications appears to help people fall asleep without causing grogginess the next day (YES! You did read that correctly!)

These new medications – known as dual orexin receptor antagonists (DORA) – target a more specific region of the brain than the other popular sleep drugs, promoting sleep without affecting cognition.

About 15 years ago, scientists discovered chemical messengers known as orexins, which are released by a relatively small brain region known as the lateral hypothalamus. lateralThis area of the brain releases orexins during the day to keep us awake and lowers levels at night so we can sleep.

The appeal of orexin antagonists, said Dr Michael Thorpy, director of the Sleep-Wake Disorders Center at Montefiore Medical Center in New York City, is that they “target a system that’s more specific for sleep.”

That means, theoretically, fewer side effects and perhaps less of a tendency to be habit-forming, Thorpy explained.

Merck already has one such drug, suvorexant, under review by the FDA.

But with this study, Uslaner and his colleagues investigated a compound called DORA-22, which has the same mechanism of action as suvorexant, to see how it fared alongside Ambien, Lunesta and also diazepam (Valium) in rats and rhesus monkeys.

DORA-22 did not lead to the same mental impairments as the other three drugs. Rhesus monkeys and rats performed just as well on memory and attention tasks shortly after being administered DORA-22 as they did on the placebo.

This is the first time in years that scientists have targeted a totally different receptor in the quest to combat insomnia, said Dr Alexandre Abreu, co-director of the UHealth Sleep Center at the University of Miami Miller School of Medicine.

444-36-cartoonBut many questions remain as even experts note that findings from animal studies do not always hold up in human trials: Do the drugs truly have fewer side effects? Will they be habit-forming? And will they change the quality of sleep in any way?

Those questions will only be answered with more testing and use in humans…(waiting…waiting…waiting…)


Related articles

More Sleep (on this blog…not for us!)

Good news! The most widely prescribed sleeping pills DO help people get to sleep, but maybe not only because of the medicine, a new study suggests.

Chronic Comic 157When researchers combined studies of some of the newer prescription sleep drugs, they concluded that the drugs owe about half their benefits to a placebo effect. Personally, who cares? If the placebo effect gets me to sleep – that’s fabulous!

But at least one sleep expert disagrees with that conclusion.

AmbienLunesta, and Sonata and their generic versions were all included in the study.

The researchers conclude that these drugs improved people’s ability to fall asleep compared to a placebo; however, the size of the effect was small.

They add that the risk of side effects and the potential for addiction need to be considered when considering using these medications for treating insomnia.

Side effects of sleeping pills can include memory loss (would you actually notice through the fibro fog?), daytime sleepiness, and increased risk of falls, and researchers say the drugs may be especially risky for older patients.

But a sleep specialist says the study does little to convince him that the drugs are less effective than studies suggest.

“The fact is that it is difficult to measure the effectiveness of sleep medications in studies. Patients take them and they either work or they don’t.”

“I don’t see how these researchers can come to the conclusion that 50% of the effect of these sleeping pills are due to the placebo effect,” says David Volpi, MD, of the sleep disorders division of Lenox Hill Hospital in New York.

141. sleep deprivationAccording to researcher A. Niroshan Siriwardena, MD, PhD, one of the major limitations of studies submitted to the FDA is that they failed to measure some of the most troubling issues associated with sleep disturbances including total sleep time, waking after falling asleep, and daytime sleepiness.

“Because the studies didn’t measure these things, we cannot say whether these drugs are useful for improving these outcomes,” he says.

And, Volpi says prescription sleeping pills are often used by patients for much longer than they were originally intended – These drugs are overprescribed and patients stay on them too long, he says.

Siriwardena and Volpi also agree that other types of sleep treatments, such as talk therapy, are underutilized and could be used to help many more patients with sleep issues.

“There are so many things you can try for sleep problems, and cognitive behavioural therapy is one of the best things patients can do to get off of these medication,” Volpi says.

The new analysis, published in BMJ, was a collaborative effort by scientists from the University of Lincoln in the UK, Harvard University, and the University of Connecticut.

It included data from 13 trials submitted by pharmaceutical companies to the FDA for approval of eszopiclone (Lunesta), zaleplon (Sonata), and zolpidem (Ambien).

The studies focused on the time it took to fall asleep after taking the drug.

The new analysis shows that sleeping pill users fell asleep about 22 minutes faster than non-users. Those on placebo fell asleep after 42 minutes.

Prior to publication of this study, the manufacturer of Ambien declined to comment; and the makers of Lunesta and Sonata did not respond.


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.


(Vita)minimally Beneficial

We’re back at the day that I organise my dosette (a reusable device that allows medicines to be housed in grid like compartments, in preparation for sequential dosing according to a prescribed regime). Now, approximately 90 days ago, I ordered a tonne of supplements because I read that they might help my FM – and now I’m running out.

I never bothered to research them. I just kinda asked my GP is it okay to take them, and off I went.

I mean, really, how many of you have been told of miracle supplements that will make you better, energise you, and let you go back to work?

As such, I had a bit of a look around the net and put together a little table (here). By no means does it have all the information about each supplement, nor does it have every supplement. So, I’m suggesting (strongly) to you that, prior to trying, adding, reducing any of your supplements, please talk to your doctor.

Questions to ask your doctor include:

  1. What’s the right dosage for me?
  2. Should I take it with food?
  3. What time of day should I take it?
  4. Will this supplement interact badly with my prescriptions?
  5. Does it have side effects that might mimic or aggravate my fibro symptoms (such as depression or sleep difficulties)?


If you’d like to see iHerb’s selection of supplements, click here. Use Coupon Code LHJ194 to get $10 off any first time order over $40 or $5 off any first time order under $40.