I organized the support group through an online social networking site. They are masters at making it easy and organized to start your own group. Before this weekend, the only requirement to join my group was to live locally and be suffering from Fibromyalgia and/or chronic pain/illness. Of the 23 members, 22 joined because they were genuinely looking for information, coping skills, community and compassion, but one less than active member was looking for customers.

Her first attempt at interacting with the group was by jumping into an e-mail thread about carb cravings and low energy. This is what she had to say:

 I would love to share my story about how I now have my inflammation in complete control naturally and I no longer have painful flareups that I have had for years. I have been reading everyone’s comments and I hear so many people who need help.  The nutritional product that has changed my life and my health is something called Monavie.  I will gladly share my story and explain more about why this one nutritional thing has changed my health.

Clearly a sales pitch, right? For those of you who have not heard of Monavie, it is one of the newest mulit-level marketing schemes opportunities which promises great health and great wealth. Now the former sales rep in me could almost appreciate the efforts of this “member.” After reviewing her profile I could see that she belonged to several health and wellness groups and with each group she offers to “share her story.” Let me tell you, sales is not easy, and I would imagine sales of this product is even more challenging. So she is ambitious and she has found a clever way to find potential customers without having to put forth much effort. Well, she tried her sales pitch out on the wrong group.

The well-informed and thoughtful women in my group were all over it.  Here is the first reply.

I am very leery of these products that profess to cure every illness known to mankind.  People with FMS do not have inflamation, even though it feels like it. I have tried too many ‘miracle’ cures over the years and won’t subject myself to that roller coaster ride anymore.  It’s harder on the psyche than dealing with the pain.  That’s my experience.

Thoughtful, well-spoken with a side of “I’m nobody’s fool!” How clever of her to point out the Fibromyalgia does not cause inflamation. But the replies became a little more heated after that.

Please don’t use our site to promote and make money off of people who suffer from cronic pain which is neurologically based.  There’s no magic cure. And there’s no food in the world that can take away my pain. Don’t try to sell me anything. That’s not what this group is about.

Polite yes, but to the point. And again well-informed enough to point out that Fibromyalgia is believed to be neurologically based. Eventually I stepped in, even though I think the members made their point very clear.

I appreciate that you are selling a product you believe in, but as (group members) have expressed already, this is not the appropriate place to do so.  It is important to me as the group moderator that each member feels safe and comfortable sharing with each other via our groups protected e-mails.  Please feel free to join in on any conversations as long as you are simply sharing information, not selling a product.

I guess coming from the moderator made it somewhat more official, because until this point she had written several more times in defense of her miracle elixir, but after my response this is what she had to say.

I apologize for even trying to help anyone.  Obviously, this is a heated subject for many people and I apologize to everyone for even saying anything.  When you mentioned that you were interested in what people were doing that helps I thought that I would share what I know as a nutritionist and a person who has personally suffered for years.  Obviously, this is a beehive of sensativity here and again I apologize for offending anyone with the recommendation of nutrition.

Now as moderator this irritated me, but as a former sales rep this made me laugh. It irritated me because until this happened the e-mail threads between members had been positive and informative and filled with suggestions on how to improve our health and well-being.  We are all clearly interested in doing so. For her to imply otherwise just confirmed that she was looking to make a sale, not a difference, and when she failed she became defensive. And that is why the former sales rep in me found it funny.

It is impossible not to get upset/defensive/irritated/defeated when you put yourself out there and again and again you are turned away. Sales is a hard way to make a hard living. I learned early on that I sold more because people liked me than I did because I sold a great product. This is where she went wrong. She did not take the time to get to know this smart and savvy group of women before force-feeding them a product which already has a not-so-stellar reputation.

Score one for the support group. Now excuse me while I go adjust the membership requirements for my group. I would hate to see what would happen to an Amway distributor if they accidentally joined our group.

In a continuing effort to live well with Fibromyalgia I am going to be researching and trying new and different things to help maintain my health.  I will report on my research and my own personal experiences, but I am not a doctor and therefore will not be telling anyone to try what I do.  If you think you may benefit from my experiences, please check with your doctor to see if it is right for you.

I have read repeatedly that Magnesium Malate may significantly reduce pain in people with Fibromyalgia by increasing muscle efficiency.  But for me to try something new, it is not enough to read that it helps.  I need to understand why it helps, so I did more research on the topic (what did we do before the internet?) and here is some of what I learned.

The following quote is from Fibromyalgia: A Journey Toward Healing by Chanchal Cabrera.  She is a medical herbalist and clinical aromatherapist who has taken a holistic approach to understanding and treating Fibromyalgia.

Malic acid plays an essential role in the metabolism of glucose and the production of energy through the Krebs cycle.  It tends to spare oxygen and provide greater stamina and endurance in muscle cells.  It is found in abundance in apples and may contribute to the traditional use of apple cider vinegar as a treatment for rheumatism.  Research from the Texas Health Science Center in San Antonio demonstrated significant benefit from the use of magnesium malate in FMS.  Malic acid also helps to remove aluminum, which may contribute to significant cellular disruption, from the tissues.  Doses up to 1,500 mg/day are normal.  It is often taken in the form of magnesium malate and this is particularly helpful in FMS.

This seems logical to me.  If there is truth to the theory of researchers who believe that there is a malfunction in the body’s ability to manufacture energy for people with FM, then it makes sense to take a supplement like Magnesium Malate which can help increase muscle endurance.

The fatigue I feel sometimes is simply irrational.  I wake up tired.  I have a nice relaxing day and I am tired.  Could it be that my muscles are not getting the oxygen they need to produce energy?  Could it be that my muscles burn energy faster than they can produce it?  Could it be that I am magnesium and/or malic acid deficient?  These are all theories from researchers, and if magnesium and malic acid have been proven to be important substances in the manufacture of energy – well then sign me up. 

I don’t know if it will work for me.  The brand I bought is 1000 mg per pill and it suggests taking between 1-3 each day.  I think I will start slow and just take one a day.  One of the reasons I am looking to more holistic methods of treating my FM is that I do not tolerate medication well.  But my body needs these supplements so in a way it is like taking my multi-vitamin.  At least that is how I am going to approach it.

I will be sure to update what if any changes I feel taking it.  And I would be really interested in hearing from anyone else who has taken it and what your results were. Post something in the comments so we can get a dialog going.