“Apprehension, uncertainty, waiting, expectation, fear of surprise, do a patient more harm than any exertion” Florence Nightingale
Dear all, This is a very special issue for our newsletter because it is Fibromyalgia Awareness Day. The 12th of May, being Florence Nightingale birthday, and because she may have suffered from fibromyalgia, it is the Fibromyalgia Day. But it goes further than that. She was vociferous and un-fatigable in pursuing the right of patients. She deranged the conservatism of the society of her time and was considered by many as a pest. They tried everything to keep her quiet but even honors did not shut her down (nowadays, many doctors and nurses are happy to stay quiet in exchange of honors or money). If you have read the first issue of the newsletter, Dr Susan Wong has shown how we are all taken to the cleaners by new drugs from Big Pharma. Not only they are no better than the previous ones but even worse and more expensive! Florence had also talents in statistics and would have been up in arms on this situation. Where are the academics that are supposed to defend us against this? Are they all paid by Big Pharma to throw us in this robbery? Why has the FDA refused to close down Pfizer? Because it would mean that many workers who had nothing to do with this crime would be punished. So, let's see. Let's not arrest the Al Capone’s of this world because many of their employees working for them had nothing to do with the crimes! Florence would certainly have fought this. Let's not forget it whilst we celebrate this day. Use your power through Twitter, Facebook and other mediums to say no to this. You'll make Florence proud! This is the Florence Nightingale spirit! Big hugs to everyone. Remember you're not alone! Anne Masterson Your WebsiteYou are writing in Your Website and that's very successful. However, some of you are not published or heavily edited and a few do complain about it.I belong to many forums that are not edited. The usual problems that come up regularly are: - talks that are totally out of subject - disgraceful comments - call to books, DVDs, articles that are plainly false or of low quality When that happens, a lot of "unsubscribe" messages appear because members have had enough of this garbage. So, these forums loose the trust of precious subscribers. This is the reason I do edit those messages. The trust you have with our website depends on its quality. Sure, we are not looking only for academic type of writing. Fibromyalgia sufferers that want to express themselves about the difficulties they have are more than welcome. But we have to make sure that improper comments are not included and we will not support wrong information. Debatable information is acceptable but will be debated. Recently, we have had desperate letters of fibromyalgia sufferers that are finding life hard to live. Those are the ones were we need you the members to help if only with a big hug. It's like a card you send: it's the gesture that counts so you don't feel lonely! Remember: first step is knowledge, second step is support. Best wishes Philippe Obesity Is Bad For Fibromyalgia!You may have heard what was announced as the latest news about obesity being a factor in the development of fibromyalgia.This comes from an analysis of a Norwegian database: The Norwegian HUNT study. They examined the association between leisure time physical exercise, body mass index (BMI) and the risk of developing fibromyalgia (FM). They reviewed a large database of unselected female population (15990) who had no fibromyalgia or physical impairment to start with and reviewed them 11 years later. At that time, 380 had FM. A weak association was found between level of physical exercise and risk of FM. Overweight or obese women (BMI >/= 25) had a 60-70% higher risk of developing FM than normal weight women. The risk was more than two-fold higher if they did not exercise or exercised less than 1 hour/ week. This association between overweight and fibromyalgia was already known. A study conducted in Salt Lake City University on 38 FM patients found that 71% were overweight or obese at the time of having their FM. They also found that there was a strong association between BMI and IL-6 (interleukine-6, a pro-inflammatory cytokine) as well as with the distance one could walk and also with a disturbed sleep. But there were no association between BMI and self-reported symptoms (but the numbers are low--only 38 patients). Another study in Israel examined the relationships between BMI and measures of tenderness, quality of life, and physical functioning in 100 female FM patients. 73% were overweight or obese at the time of their having FM. Those overweight or obese FM patients displayed higher pain sensitivity, higher physical dysfunction and lower levels of quality of life. In another study done by the Illinois University on 211 female FM patients similar conclusions were reached as the ones above.
Comment: This is the usual question of what came first: the egg or the chicken? - There is no doubt that not everybody who's overweight do develop FM - About 30% of FM are not overweight - When you have FM, you cannot exercise easily and often you can't do your usual activities so you tend to put on weight - Even before you developed FM, you did have a muscle disease that is the hallmark of FM. That muscle disease is marked by muscle hyperactivity and lack of relaxation. That lack of relaxation is unfelt but it does limit your ability to recover from exercising or any other activity. So, surreptitiously, your energy spending tends to be less than it should be. Therefore, you tend to put on weight. - Remember that you lack magnesium: so your cells cannot function normally and produce the required energy. So you don't burn the calories that you are supposed to, therefore: weight gain! - In an ideal world, we should be eating much less carbohydrates and even more so if we have FM. So again weight gain. - FM is sensitive to stress. It maybe that people who have developed FM were already on a higher stress level. Stress is frequently accompanied by overeating...so weight gain. - Despite what is usually said about FM: there is an inflammation! CRP levels can be elevated at time for no other reason and IL-6 is even more elevated (it's been shown that there are abnormal peaks over 24 hours). Obesity is also recognized as being an inflammatory condition. FM can only get worse with obesity if only for that reason. This is not taking in account that being overweight is an impediment on its own. So, who came first? Any Solution?Two studies have shown the advantage of treating overweight and obesity in fibromyalgia patients. The reduction of weight in FM is favorable with a betterment of the pains and symptoms.Morbid obesity may necessitate abdominal surgery if everything else fails like in all morbid obesity situation. FM is not a contra-indication but an added indication! Like in any morbid obesity resistant to the usual medical dieting, by-pass or volume reduction surgery is strongly indicated. We have indicated in our website the surgical and anesthetic problems associated with fibromyalgia and their solutions.
Comments: - Losing weight if you are overweight leads to improvement of FM. - Easier said than done because of the following. Exercise: Yes....But Be Careful!A review of 46 exercise treatment studies done at the Portland Oregon University found that exercise was beneficial for symptom improvement.However, the greatest effects and the lower attrition rate (number of people who abandon or quit the exercise program) occurred with exercise programs of lower intensity. Their conclusion was that the exercise program should be of appropriate intensity, self-modified, and symptom-limited.
Comments: - I have said it before: as an FM sufferer, you cannot exercise the way you would if you did not have FM - That means YOU MUST FORGET THE SAYING "NO PAIN, NO GAIN". Sorry, I am not shouting, just making sure you get the message. The exercise must not be uncomfortable, let alone painful. - Everyone with FM knows that one day is good, one day is bad: you must respect that reality when exercising. One day you may be able to do 10 minutes, another day just 1 minute! - I am going to tell you a secret (but you can repeat it :-)): If you have 3 painful limbs and 1 limb that's not, you exercise the one that's not. You do not even stretch the ones that are painful! Any interest in exercising the one that's not painful? Yes, because it will produce nitric oxide, a powerful anti-oxidant that is going to help the pain. So, why should you exercise the limbs (or parts of limbs) that are painful? It would only increase the pain and the stress when you can get a good effect by exercising the limb without pain. - Exercise slowly the parts of limbs that are not painful and stop when it becomes slightly uncomfortable. How do you know when it becomes uncomfortable? Easy: when you start wondering if it is becoming uncomfortable!! - Do not exercise in groups: you will push too hard. Not one FM is like another, not one day is like another! - When you finish exercising, you need to rest and relax. - Read again the last part of the conclusion of the above review in Oregon: "...the exercise program should be of appropriate intensity, self-modified, and symptom-limited." Appropriate intensity means appropriate to you alone on that day. Self-modified means that one day you can do an exercise that you can't do another day or you can do it 1 minute only on one day and 10 minutes on another (and you only knows about it: Listen to your body!). Symptom-limited means that you stop when it becomes slightly uncomfortable and do not push it which would be counter-productive. A bizarre studyA study conducted in San Diego University has examined the association between baseline and earlier physical activity and the incidence of breast cancer in postmenopausal women. It concluded that more physical activity was associated with a lower risk of breast cancer in postmenopausal American women.
Comments: - It seems that this study has got nothing to do with fibromyalgia. - In fact it's again the egg and chicken story! Those who did exercise are not similar to those who did not. Maybe the exercise ability is a marker of a different body that is going or not to develop breast cancer. Maybe exercising has the ability to change the body in a positive way. Who knows? - The pre-cancer data is too sparse to take any hard conclusion. The same apply to fibromyalgia and weight and ability to exercise. Listen to your body and try to loose weight. I'll come back on the diet for FM. Susan Wong, MD
1- Mork PJ et al. The association between physical exercise, body mass index, and risk of fibromyalgia: Longitudinal data from the Norwegian HUNT study. Arthritis Care Res (Hoboken). 2010 Jan 29. 2- Okifuji A et al. Evaluating obesity in fibromyalgia: neuroendocrine biomarkers, symptoms, and functions. Clin Rheumatol. 2009 Apr;28(4):475-8 3- Neumann L et al. A cross-sectional study of the relationship between body mass index and clinical characteristics, tenderness measures, quality of life, and physical functioning in fibromyalgia patients. Clin Rheumatol. 2008 Dec;27(12):1543-7. 4- Yunus MB et al. Relationship between body mass index and fibromyalgia features. Scand J Rheumatol. 2002;31(1):27-31. 5- Shapiro JR et al. A pilot study of the effects of behavioral weight loss treatment on fibromyalgia symptoms. J Psychosom Res. 2005 Nov;59(5):275-82. 6- Saber AA et al. The effect of laparoscopic Roux-en-Y gastric bypass on fibromyalgia. Obes Surg. 2008 Jun;18(6):652-5. 7- Macera CA. Past recreational physical activity and risk of breast cancer. Clin J Sport Med. 2005 Mar;15(2):115-6. See you next time and don’t forget: You are not alone!
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