We recently had the pleasure of chatting with Michael Hastings, a former West Wing actor. Michael suffers from fibromyalgia, and was kind enough to share some of his experiences and stories with us. This is the first part of a three-part series.
Q: Fibromyalgia isn’t as common in men. Can you talk about your experience with being diagnosed?
A: I was first diagnosed with fibro back in the mid-90s by a Naturopathic Doctor. I had been to 20 medical doctors and they had no idea what was going on inside me. After being diagnosed, I found it very difficult to find any men who had fibromyalgia. The technology explosion in the past decade helped tremendously, since I was able to start connecting with men and women through the internet via websites, Facebook, YouTube, second life, Google docs, etc. I felt very alone in the 1990s, but felt very connected during this past decade.
In a video I’m working on there will be some interviews with some men with fibro. One of them was a Navy Seal (actually he trained Navy Seals). Another man was in a wheelchair for 16 years and through the right doctors, he no longer needs his wheel chair; and another man who has improved his FM conditions was a body builder who recently was married and published a book. I will be starting up a men’s fibro support group online this summer called, “Hercules Men – Fibro Support Group for Men”.
I am planning on doing monthly meetings on audio -Skype (not video –Skype), so we can collaborate together on what is working and what is not. We will be storing our information and links in a Google Doc and build on the information we find. If we come up with a lot of new answers to FM, we will co-publish our information in a book. For men who want to join, they can Skype me at: captain.hastings.usa to join and share. I also have a group on Facebook, which is a blog where men can post daily. The address on FB is: https://www.facebook.com/groups/415184541887031/
One issue with men is that they are typically not as verbal as women, so it actually slows down the process of getting and sharing answers to fibro. There isn’t a lot I can do about it, but I can offer avenues through Skype and a Facebook blog which invites them to share and collaborate. We are all in this together, and the sooner we begin to collaborate, the faster we are going to get solutions to FM. I also am planning on starting an FM group for men and women in Second Life, a virtual world, which will meet monthly on my virtual ship in cyberspace (Yes, I am a techy and have a Masters Degree in Educational Technology through the University of Arizona).
Q: What advice do you have for men and women who have just been diagnosed with FM? What are the best online resources for individuals with FM?
A: My advice is to not go through life with FM alone. Connect with the many support groups which are online and find out what is working. The blog formats are great, since you get real people sharing real answers—that is, what works and what doesn’t. Also connect with established organizations that can share the results of genuine research.
As someone who has worked in the Hollywood area, I understand how dazzling marketing and hype can mislead us into spending money unwisely. I still like trying new things to improve my health, but right now I am focusing on what genuine research reveals. I actually have taken two research classes through the University of Arizona, and am actually taking a third course in the graduate Library Science Program as well. These classes are helping me locate studies on FM which you cannot find on the internet, because they are buried in academic databases. I have already found some interesting studies which I will be sharing in my video which will come out later this year.
On-line sources I recommend are:
- www.endfatigue.com with Dr. Teitelbaum
- FM Christian Support – Facebook: https://www.facebook.com/groups/fibrochristian2/
Q: What should loved ones of fibromyalgia victims know in order to make life easier?
A: Most people don’t understand or “get it;” however I do share an example that gives them some perspective. I tell them that if I took a one pound weight, and moved it around with my arms for three or four minutes, it will cause pain, stiffness, and inflammation in my neck and shoulders for 3 or 4 days. It would also create a lot of brain fog, since the muscles will get tight and painful from the exercise, cutting off circulation to the brain.
I actually have to take supplements to help slow down this cycle from happening. I have supplements that help the muscles and the brain function whenever I find myself in a situation where I have to use my muscles. It’s not a cure, but more of a band aid to the chronic problem.
I also recommend loved ones to visit a fibro support group, so they can see and hear what other FMers have to say.