From Our Readers: Comments & Suggestions – 11/20/13

Morgan Freeman and Fibromyalgia

Re: "Should Morgan Freeman Speak Out about Fibromyalgia?"

Men are, indeed, taken more seriously than women, which could raise credibility for fibromyalgia considerably. But perhaps the greatest benefit would come from promoting fibro as a gender-blind illness. As long as it is seen as a woman's issue, not only will it be dismissed as purely psychosomatic, but it will also never get the necessary resources devoted to research into causes and treatments. As a feminist, I fiercely resent that a man would be a better spokesperson for us than a woman–for ANY reason/rationale. But reality is what it is. And it bites. So we need to take advantage of whatever tools may be available, and a well known and highly respected man such as Morgan Freeman is a real opportunity. All that said, it's his decision to make. While the fibro community stands to gain should he speak up, there is real risk to him, for reasons familiar to all of us. – sick4ever


After reading the article, I question whether Mr. Freeman even has fibromyalgia. It sounds more like some sort of referred pain from his nerve damaged injuries – sort of like radiculopathy or perhaps even more like something that's called Compartmental Regional Pain Syndrome or CRPS. It used to be called RSD or Reflex Sympathetic Dystrophy. Generally, its onset occurs after injury and/or surgery and from what I know, is extremely painful. It shares some fibromyalgia characteristics, in that it can cause some autonomic type dysfunction, but that generally occurs when the whole body is involved (like the case of an acquaintance of mine, who was thrown through a windshield and suffered head trauma as well as full body injuries). Most cases, like Mr. Freeman's as well as another friend of mine, are localized to the injured extremity or perhaps a quadrant of the body, especially if it's referred pain. I could definitely see misdiagnosis' between the two conditions. I also base my theory on the fact that Mr. Freeman does not complain of any unwell feelings or lack of normal energy for a man of his advanced years. I definitely think it could detract from the campaign to give fibromyalgia some medical credibility, if it turned out that a famous spokesperson/sufferer didn't have the condition to begin with. Just my two cents worth – Rick G.


I am a fan of Morgan Freeman and believe he would be an excellent spokesman for people with Fibromyalgia. But I respect his decision, as a person with fibromyalgia I cannot commit to even a dinner outing because I never know how bad the pain will be from day to day. So how can I ask such a commitment from Mr Freeman? – Dideno


I agree that it is up to him, but let him know he is more than welcome at any time. As others have said, it is not for us to decide but his decision alone. I used to volunteer for many charities but fibro has over time made me have to reduce how much and what I can do. Instead of doing walk-a-thons, I now volunteer to sit the check-in tables, or do post and pre event office type work. We all understand the sacrifices we each have to make, and that Fibro varies from person to person. As to his specific case of Fibro, that is between him and his doctor to determine. Have we as the Fibro community forgot that our "definitive" diagnosis is less than a decade old and that many of us had to fight with Doctors who said it "was our imagination" or a psychiatric disorder. I have dealt with it since the mid-90's and had to fight with MD's who thought I needed anti-depressants, and was only seeking narcotics. It wasn't until a friend of a friend (who was a MD) observed me dealing with Fibro without any meds at a weekend re-enactment event that I finally got the aid I needed. So let's not forget that any good help IS help. There are still many myths out there to dispel about Fibro, and if Mr. Freeman is up to the task and wants to, as much or as little as he can, more power to him.


After reading a few of the comments, I agree that Mr. Freeman would be an excellent spokesperson for FM, however, he speaks of his love of solitude and being under constant scrutiny as FM's spokesperson wouldn't be to his advantage where solitude and privacy are concerned. I feel men are taken much more seriously when it comes to most health concerns. Most of the major studies involve men, not women, even though both sexes suffer from most of the same maladies. Would I like for Mr. Freeman to speak out regarding his battle with FM? Would I like to see more "non-believers" among the medical community take notice when a truly credible person offers his perspective on a greatly misunderstood affliction? Of course I would. But he isn't obligated to do so. As someone else mentioned, we know how taxing it is to have an active flare. We know what it's like to live hour to hour or day to day unable to make plans that involve much more than a nod and a nap, if we're lucky. On reading Mr. Freeman's description of his bout with FM I have no doubt that he does indeed have it. He does paint an accurate picture of FM, similar to my own experience. I feel more people would take notice and make an effort to understand Fibromyalgia, were he to speak out about it. But it's not up to us to determine whether or not Mr. Freeman should speak out about FM. – wyldaeval


Many Questions About This Study

Re: "Pleasure/Pain Brain Signals Disrupted in Fibromyalgia Patients"

There are many studies which come from the premise that FM is a central pain processing problem and that sufferers have increased sensitivity to pain. This "hypothesis" also implies that the pain is generated from no source or that the source is "normal" sensation re-interpreted as painful. This may be part of the condition but it ignores the studies which have shown significant peripheral abnormalities. It also ignores the immunological data which tells us that there are pseudo-autoimmune activities and does not account for the extreme fatigue also felt by many with FM. While this article supports previous research of the involvement of the dopaminergic and gabaergic transmission the idea that it is a rewards/punishment signaling disruption is fanciful. We are not told how many years these subjects have had FM. Just think about it: If you have had debilitating pain for many years then you will be "on-edge" about pain, really on-edge!. When you anticipate an extra painful stimulus you will feel like you are being punished. When you experience extra pain, such as a splinter beneath your fingernail you probably will scream louder than someone who does not have FM. Yes, people with FM become more sensitized to pain. THIS IS A CONSEQUENCE OF THE ILLNESS!  The theory of central sensitivity is useful but if it is the starting point theory of the research it will limit/bias the research conclusions as in this study. – IanH


Ginger Helps with Pain

Re: "Fibromyalgia Drug Savella May Also Help Prevent Migraines"

I have tried numerous medications to stop the Fibro pain. Unfortunately, I have not found the correct combo. I have tried Savella but the medication was not successful for me. I believe my Fibro is link to inflammation in my body. I also believe my Fibro is secondary. I was stricken with Fibro after I developed Sheehan's Syndrome. I have been eating about a half cup of raw ginger daily. I have found that ginger has helped with my pain from Relapsing Polychondritis. I hope Savella can help others with Fibro. – HypoGal


The Importance of Mindset and Taking Responsibility for One's Health

Re: "Creating a Mindset of Healing"

As someone who has dealt with fibromyalgia since early 2001, and who suffered daily, crushing chest pain, I can vouch for the importance of a positive mindset. I can also vouch for the importance of taking responsibility for one's own health. This is not to negate the fear, pain, depression and all the rest that accompanies this terrible condition. But over time, I was able to get to the place where I do not have that kind of pain anymore, and am able to live a much more normal life. This was done by two ways: 1) realizing that I could improve my situation, and 2) learning all I could about the many natural ways of improving one's health. Among these ways was gradually improving my diet so that, while I continue to enjoy foods (I'm actually a "foodie"), I eat and appreciate a much more natural diet. My pain specialist, who I continue to see as I am winding down from my medications, considers me to be something of a "poster girl" for fibromyalgia recovery. I used to take about ten meds all at once, including high doses of Oxycontin and Vicodin, but am now down to only my Lyrica, the one drug that made a significant dent on my recovery. I recently went down from 300 MG per day of Lyrica to 200 MG, with plans to lower it further, and even do away with it, if possible, because it is my belief that I will be likely better off without it. I believe that the meds themselves caused many of my most annoying symptoms, and might have been perpetuating my fibromyalgia, so I am glad to be off of all but the Lyrica. I did this mostly on my own, but with the advice of my doctor as to the best ways of getting off my meds. It took some fortitude to do this, since most medical doctors have a pharmaceutical orientation. However, they cannot argue with real results. I don't expect to get completely over my fibromyalgia, but I certainly do expect to keep improving within the bounds of my advancing age (69). – pearls

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