No-No to Nana Naps

According to a study published in BMC Musculoskeletal Disorders, when patients with FM nap during the day to cope with their symptoms, their symptom severity may actually increase. 75. good in bedA team of researchers from New Zealand, United Kingdom, The Netherlands, and Germany gathered data from an online questionnaire and noticed that frequent and longer naps taken during the day corresponded to greater symptom severity.

“Given the common use of daytime napping in people with fibromyalgia, evidence-based guidelines on the use of daytime napping in people with chronic pain are urgently needed,” stated the authors.

198. tiredThe questionnaire gathered data on age, sex, and other population descriptors, as well as measures to assess daytime napping behaviour. From this data, the researchers divided the patients into two categories: those who regularly napped and those who napped less frequently than once a day. The majority of daily nappers did so during the afternoon without meaning to take a nap. Only 22.5% of participants indicated that they plan their daytime naps. Generally, patients nap because they are tired or exhausted, do not feel well, need to make up for a bad night’s sleep, have a headache, or are experiencing pain.

FYI: Younger patients napped more than older patients during the day, both in frequency and in duration.

Although napping makes patients feel better at the time, this study suggests that overall symptom severity may worsen as naps become longer and more frequent.

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Don’t Give Fibromyalgia the Upper Hand!

Upping Your Exercise Routine

As we know, previous studies have found short-term benefits of exercise for FM. But many of us fail to keep up with exercise programs out of fear that it will worsen pain.

According to a new study, for those who are able, exercising once or twice more weekly (that is: more than you are already doing) may alleviate some of the symptoms.

hydrobicsPatients received individualized exercise prescriptions and completed baseline and follow-up physical activity assessments, to evaluate the relationship between long-term maintenance of moderate-vigorous physical activity (MVPA) and clinical outcomes in FM. MVPA (in this study) was considered to be an increase 10 or more metabolic equivalent hours per week above usual activities  Outcomes included improvements in overall well-being, pain severity ratings, and depression.

“This study shows that if they’re able to stay with the exercise program in the long term it actually is helpful to them,” said Matteson, chair of the department of rheumatology at the Mayo Clinic in Rochester, Minnesota.

Although sustained physical activity was not associated with greater clinical benefit compared to unsustained physical activity, these findings also suggest that performing greater volumes of physical activity is not associated with worsening pain in FM. Future research is needed to determine the relationship between sustained MVPA participation and subsequent improvement in patient outcomes.

“One of the best known therapeutic activities for fibromyalgia patients is exercise,” said Anthony Kaleth, who specializes in exercise testing at Indiana University – Purdue University Indianapolis. “Our study confirmed that result.”

physical-activity_240Any increase in activity, whether or not it was maintained, resulted in positive changes in symptoms and no increased pain, according to the findings in Arthritis Care and Research.

If they had followed the participants for a longer period of time, they might have seen more benefits for people who maintained the program, Kaleth said.

Most people use a combination of medications, including pain relievers, antidepressants and anti-seizure drugs to alleviate fibromyalgia symptoms. Doctors also recommend keeping active with walking, swimming or water aerobics, but many patients are reluctant to start exercising.

“They’re more worried that it’s going to be painful, but that’s more of a psychological effect,” Kaleth said.

physical_activity_web(1)Starting off too vigorously before building up endurance can be painful for anyone, with or without fibromyalgia, Dr. Eric Matteson, chair of the department of rheumatology at the Mayo Clinic in Rochester, Minnesota, said.

“This is a stepping stone I think in terms of the actual result that we found,” Kaleth said.

Bigger is NOT Better

There is a current ad in Australia about the 10,000 tonne woman. This woman has got a bit of weight to lose this year – she is asking for our help. She has been a weight loss consultant for years, so she has seen a lot of people try to lose weight, and the difference support makes. Why are we trying to do it by ourselves? She decided to lose weight with a friend, as a team. Then other people got on board, and then she noticed that the more people shared the weight, the easier it got for everyone.

That’s why she is asking the whole country to join in. Pledge some weight, support someone on their mission, and we’re going to lose 10,000 tonnes together.

biggerI have pledged 30kgs (about 66 pounds) – yes, it’s a lot but it is the amount of weight I have gained since being on antidepressants and FM medication. It is ironic that, although many of these medications cause us to gain weight, excess weight is known to aggravate FM symptoms – such as pain sensitivity and sleep disturbances – and reduce quality of life among patients.

New research now shows, the more severe the obesity, the more severe the FM symptoms, and those who have a body mass index, or BMI, of 35 or higher experience the worst symptoms.

“I’m not surprised,” says study co-author Terry H. Oh, MD, assistant professor of physical medicine and rehabilitation at the Mayo Clinic, in Rochester, Minn. She says that earlier studies have shown that obesity increases symptoms, but there hadn’t been concrete information before this study about whether different levels of obesity affected FM symptoms differently.

In other words, is all obesity the same when it comes to FM?

Help-with-ObesityThe answer is no: Bigger definitely is worse, leading to significantly more severe symptoms. “The severely obese seemed to have the most problems,” says Dr Oh.

The study, published online in the journal Arthritis Care & Research, divided 888 adults with FM into four groups: non-obese (BMI less than 25), overweight (BMI of 25 to 29.9), moderately obese (BMI of 30 to 34.9) and severely obese (BMI equal to or greater than 35). Patients were tracked for three years, underwent a physical evaluation and were asked to fill out health surveys and the Fibromyalgia Impact Questionnaire.

The researchers found – for most symptoms, but not all – that as the BMI category increased, so did the severity of the symptoms. But trends showed most symptoms worsened with higher BMI, but for the most part, the difference in the severity of symptoms was statistically significant for the highest BMI group compared with the other groups. Patients in the highest BMI group, for example, missed work more often because of symptoms and reported more pain, stiffness and fatigue compared with those who were not obese or less obese. Also, the study found that the severely obese patients had more tender points on their bodies and worse physical functioning than the non-obese and less obese.

Why is there a relationship between BMI and the severity of symptoms? Dr Oh and her team write that multiple factors may be at work, including a higher level of pain receptors in fat tissue, elevated levels of pro-inflammatory cytokines, loss of physical fitness and an increase in mechanical loads on the body. And the higher rate of obesity in FM patients “may be caused by a vicious circle of pain and physical inactivity.”

It is important that people with fibromyalgia find a way to stay active despite the chronic pain and fatigue that come with it.

obesity“Those who are severely obese may need more help for weight-loss management,” Dr Oh says. “The basic message is that they have to stay active and exercise by starting slowly and gradually in terms of duration, intensity and frequency. It’s more than saying ‘lose weight.’ They need specific recommendations or to see a dietitian or endocrinologist or get other treatment options.”

Akiko Okifuji, PhD, a psychologist at the Pain Research and Management Center and professor at the University of Utah, in Salt Lake City, conducted earlier research on FM and obesity, which found that obese patients had more pain, less physical strength and more sleep problems.

“Both obesity and fibromyalgia are very different persistent conditions that impact overall health, physical well-being as well as quality of life,” Okifuji says.

She believes people intuitively know what Dr Oh’s study showed – that severe obesity is bad for FM patients. “But it’s good to show it scientifically,” Okifuji says. “Patients need proper nutritional education. It is difficult when you don’t move much. Sometimes food becomes a comfort. They need education on how to deal with that and how to maximize calorie burning while minimizing intake. When dealing with chronic fatigue and chronic pain, it is very difficult to do weight management. The key issue for the scientific and clinical community is to come up with an effective [weight management plan] for people who can’t move that much. It’s a tricky thing.”

Want to check your BMI?

Mine is 39 and I have decided it is time to get myself together! Anyone else with me?

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.”

Working Girls

Sorry guys, but this is another study about women only (it probably can be associated to men quite successfully though).  Women with FM have great difficulty in managing a work life with their condition. Some women (like me) cannot work at all in their chosen profession: who wants a lawyer with fibro fog? Some work part-time and some struggle to work full-time. Reported work ability in women with FM varies from 34 to 77 per cent in studies from different countries.1

The factors which affect the ability to work in women with FM include pain, fatigue, impaired physical capacity and activity limitations. However, it is difficult to define to which extent symptom severity can be compatible with work.

A cross-sectional study of 129 women of working age with FM was categorized as working or non working. The average age of participants was 45.7 years, with an average of 10.5 years worth of symptoms. According to the American College of Rheumatology criteria, the average number of tender points was 14.8.

The main finding in this study was that working women (WW) displayed better ratings than non working women (NWW) in terms of pain, fatigue, stiffness, depression, disease specific health status and physical health related quality of life, which represent body functions and overall health status!

  • Physical capacity did not differ significantly between WW and NWW in terms of performance-based tests, where both groups showed lower capacity than the average population.
  • The number of pain localizations was significantly lower in WW than in NWW and global pain was significantly milder in WW than in NWW. The average pain of WW was well above 50 (0–100), which corresponds to the average pain level in previous studies of FM – this is measured using the Fibromyalgia Impact Questionnaire (a disease specific measure and comprises ten subscales of disabilities and symptoms ranging from 0 to 100). The average NWW pain was above 75 (0–100), which corresponds to the ratings of severely afflicted patients with FM. The results indicate that women with FM having moderate pain generally could be expected to work. Some women appear to be able to work despite severe pain, which raises the question if there are workplace related factors that support their ability to work. As such, the influence of work related factors on work ability in FM need to be studied further – it was not covered in this study.
  • 2011-04-20_Working-9-to-5 Global fatigue was found to be significantly lower in WW than in NWW as well as physical fatigue, reduced activity, and mental fatigue. Fatigue has previously been found to be an important factor for work disability; however, these results showed severe global fatigue with ratings of over 70 also in WW, indicating that fatigue might not be a critical factor for work disability.
  • Depression was rated significantly lower in WW than in NWW.
  • WW displayed a significantly better disease specific health status than NWW.
  • Physical health-related quality of life was significantly higher in WW than in NWW; however, the quality of life of workers in this study was very low as compared to a national sample.

The theory of the healthy worker effect suggests that healthier individuals are more likely to remain in the workforce BUT a limitation of this study is the cross-sectional design which does not allow analyses of cause and effect; that is: does working make women with FM healthier, or do healthier women with FM work?

  1. Henriksson CM, Liedberg GM, Gerdle B:  Women with Fibromyalgia: Work and Rehabilitation. Disabil Rehabil 2005, 27(12):685–695.

 

Got Morning Stiffness?

When asked, most of us would say that the most debilitating symptoms of FM are pain, fatigue, and sleep disturbances. For me, the next one is stiffness – and who wouldn’t complain about waking up each morning to a body that feels like the final stages of rigor mortis?

But most doctors generally regard it as a minor symptom or a sign of inflammation unrelated to the fibromyalgia.

121. rise and shineWhen doctors think of stiffness, they conjure up rheumatoid arthritis and other inflammation-related joint diseases that make it harder for these patients to get going in the morning. Yet studies in FM patients also show stiffness is usually worse in the morning and “morning stiffness has been rated as more severe in fibromyalgia than rheumatoid arthritis,” says Robert Bennett, M.D. of Oregon Health and Science University in Portland. He says people with both conditions have worse stiffness than those with FM alone. But why would FM patients be troubled by stiffness?

As people age, they get arthritis, become less active, and expect a little morning stiffness. However, this does not explain why a 25 or 45-year-old FM sufferer would show signs of joint stiffness on a test involving the ankle. Needless to say, FM patients showed twice as much stiffness as age-matched healthy controls.

Stiffness sometimes correlates with pain, which means that the drugs used to treat our pain should help with the stiffness – but, in a study supported by Eli Lilly, the use of Cymbalta only improved the symptom by a tiny 10%. This compares closely to the 13% benefit found in the trials of Lyrica.

If the pain of FM was solely related to the stiffness, the drugs should be able to produce significant improvement in this symptom. Yet they don’t.

Fibromyalgia is a messy multi-system condition. There is the central nervous system component involved in processing pain, an area all the drugs are supposed to work on (Cymbalta, Lyrica and Savella). There are trigger points and tender points, which cause serious pain and restrictive movement. In addition, you have to remember the circulatory system, and FM patients have increased arterial stiffness (but that’s a whole other post).

Your arteries should be flexible, but studies show a reduction of the elastic-like qualities in us compared to age-matched controls. An overly active sympathetic nervous system is thought to be partly to blame.

Therapies to relax your sympathetic nerves, such as a hot shower and many other approaches, often ease morning stiffness. One of the three FDA-approved drugs may even help, but just don’t expect too much from them.

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Can Sudafed Cure Fibromyalgia?

So, I’ve been in hell for the last couple of days with head, neck and face pain that would not quit. No matter how much Panadeine Forte and self-treatment I threw at it, it persisted. I had a reflexology treatment on Wednesday with about an hour of some relief. I hid in my darkened, heated house for the whole day Thursday; and on Friday, I went to physio and hydro – still no relief (except while actually in the pool). Tried a joint – it loosened my shoulders but my face felt like it was about to explode. In the evening, I went to a shiatsu treatment. By the time I drove home with all the lights in my eyes, I was ready to die.

Finally, despite knowing that the pain wasn’t sinus pain, I tried Sudafed PE and Panadeine Forte. Oh my, without jinxing it, relief! But how?

I looked up Sudafed PE and found that the three main ingredients are Guaifenesin, Dextromethorphan and decongestants. Hold on! I’ve seen that word somewhere – Guaifenesin?

Guaifenesin is an expectorant that helps thin and loosen mucus in the lungs, making it easier to cough up the mucus. No, that wasn’t where I’ve seen it…

Aah! The Guaifenesin Protocol: Dr St. Amand claimed that the drug Guaifenesin could treat FM symptoms by removing excess phosphate from the body. These deposits were believed to cause serious impediment of blood flow to these tissues, resulting in an impairment of vital cellular functions throughout the body. Naturally, if this were truly the case, it could explain the widespread pain and body-wide dysfunction that fibromyalgia patients have.  Now I know absolutely nothing about this protocol (other than what I have just looked up) so I do not mean to offend those who are fans/followers with this post. I am only making personal comments from my recent experience.

The removal of the phosphate should supposedly lead to a reversal of all FM symptoms, which would essentially be as close to a cure as possible.  Dr St. Amand claims that he has successfully reversed all FM symptoms in 90% of his patients.  Additionally, Dr St. Amand himself claims to have had fibromyalgia, but that he has been pain-free for decades.

At the 1996, Orlando American College of Rheumatology meeting, Robert Bennett, M.D., presented the results of his one-year placebo-controlled trial of Guaifenesin. The Oregon Health and Science University professor from Portland posed the following question at the opening of his speech: “Why on earth would someone choose to study an expectorant for the treatment of fibromyalgia?” Bennett says: “The answer lies in the realm of popular demand.”

As Dr Bennett explained, the study of Guaifenesin for the treatment of FM had to do with the patient demand for this drug and the frequent claims on the Internet and elsewhere that it was a cure for FM. The proponents of this ‘cure’ often claimed Guaifenesin wasn’t for wimps! Yes, as this drug was drawing the calcium phosphate deposits out of your tissues and into your bloodstream, you would have to go through symptom flare-ups. In the long run, after cycling in and out of severe pain, Guaifenesin would rid your body of the damaging effects of these deposits. As long as you stayed on a maintenance dose of this drug, you would live out the rest of your life pain-free. What an enticement, especially for those patients who are already up to their eyeballs in pain!

The likelihood that Guaifenesin was the cure was slim, but for the benefit of patients who were dumping conventional therapies to try it, Guaifenesin needed to be tested. Dr Bennett agreed to take on the arduous task of a one-year double-blind, placebo-controlled study to get to the truth about Guaifenesin.

Twenty FM patients were placed on Guaifenesin twice a day and another 20 patients took a placebo twice daily. None of the patients knew what they were taking, but all were given the same instructions to not take salicylates (like aspirin) because they interfere with the functioning of Guaifenesin. After a year, the response to Guaifenesin was the same as that for the placebo. Now, what about the claims on the Internet and elsewhere that this study was fatally flawed because patients might have used cosmetics and other topical products that contain salicylates? Dr Bennett provided six scientifically based reasons to toss out this claim:

Lastly, Guaifenesin was not found to increase uric acid or phosphate excretions. Thus the postulated action of Guaifenesin—the reason cited for its effectiveness—could not be demonstrated.

Dr Bennett commented, “We have shown the placebo is just as effective as the placebo!”

Nonetheless, Guaifenesin, also, has a property which is not well-known by many people (including doctors), but is well documented in the medical literature.  It is capable of acting as a skeletal muscle relaxant.  It does this by depressing transmission of nerve impulses in the central nervous system.  The reason that this information is not well-known is because Guaifenesin was a grandfathered drug, so it was never subjected to thorough testing, as later drugs had to be.  And it is not used for this property, by traditional doctors, because other drugs with similar properties were found to be more effective.

Hmm, maybe Sudafed PE is the cheaper alternative to all those expensive FM drugs?

PLEASE NOTE:

  1. I am not really promoting the use of decongestants or cough medicines to get Guaifenesin. There are potential side effects from various additives. I am NOT a medical practitioner and this post, although based on minimal internet research and my own personal experience, is tongue-in-cheek and should NOT be taken seriously.
  2. If any of my readers are actually on the Guaifenesin Protocol, perhaps they would be willing to tell us about their experience.