FMS/CFIDS Message Board
I want to bring to your attention a message thread that I began entitled "Let’s Discuss Positive Ways That FMS/CFIDS Have Affected You.” I thought you might be interested in the wonderful, positive things people have written. It has turned out to be a major blessing to me, and I thought I'd share it with you just in case you haven't already seen it. This would never exist if it weren't for your organization and your message board. Thank you for all you do. – “Lolalee”
Note: As one participant wrote, the biggest positive is… “You - Meeting all of you and seeing how people really care for each other. If I didn’t have Fibro I wouldn’t have had the blessing of you all in my life.” To read all the messages so far, go to http://www.immunesupport.com/chat/forums/message.cfm?id=882247&B=FM#961696
Just wish you had a chat with doctors
As a person who has Fibromyalgia I have to say that your site is very helpful to me. I live in Portugal and the sites are never updated. Yours is always concerned with giving us the most recent news about Fibromyalgia and CFS. Congratulations. I just wish you would have a chat with doctors. - Olga
What about the Guaifenesin Protocol?
Why are you not talking and spreading the word about Dr. R. Paul St. Amand's treatment protocol for Fibromyalgia? So many of us are having the disease reversed and/or having so many positive changes in our daily lives because of his Protocol that I'm just amazed you are not spreading the word…. Most people with Fibromyalgia are not able to take many over-the-counter medications and the meds you are talking about only help the pharmaceutical companies not the patients that suffer daily with the disease… - Chloe
Note: In case you missed it, we ran an article titled “The Guaifenesin Story” in both the FM and CFS newsletters a few weeks ago - http://www.immunesupport.com/library/showarticle.cfm?id=7244. It outlines the Protocol with a pointer to Dr. St. Amand’s informative Website.
Dr. St. Amand’s Website for list of salicylate-free products
I used to go to www.guaidoc.com to learn more about Dr. St Amand’s Guaifenesin protocol and salicylate-free product lists. It seems to have changed. Do you know what it is? I've been [using guaifenesin] for a few months and found the Website very helpful for finding salicylate-free products and dosage info. - Corinne
Note: Dr. St. Amand’s Website is now at http://www.FibromyalgiaTreatment.com
One drug that worked for me
I have been taking a new drug called Lyrica® for some neurological pain that I have been having for over a year. It also seems to lighten the pain of the Fibromyalgia. It is the first drug that has actually helped to a point where I want to share it. I had tried all the others and was drastically disappointed. But the Lyrica® does help. I hope it works for others. - Yvonne
Note: According to Lyrica’s maker, it is FDA approved for use to treat diabetic nerve pain and pain after shingles - pain caused by damage to nerves: “Medicines are sometimes prescribed [off-label] for conditions not listed in the product prescribing information. Only use Lyrica in the way your doctor has prescribed it for you.”
Thanks for information on magnesium supplementation
It was very helpful for me to read one of your articles on magnesium helped by malic acid. [“Magnesium & Malic Acid Supplementation Often Beneficial for CFS & FM Quality-of-Life Measures – Studies and Top Specialists Report,” http://www.immunesupport.com/library/showarticle.cfm/id/7247]
I have been taking magnesium alone as (I couldn't find malic acid in our pharmacies in Syria) for one and one-half months. I have enormous improvement. I have been suffering FM for the last 16 years, and on top had severe restless legs syndrome for the past year. Thanks for helping me minimize my pain and to be again in good mood and hopefully able to work again. – Sawsan
Working with stressors that can make FM & CFS more difficult
I have lived with [CFS] and Fibromyalgia since 1993 and maybe longer. I had been very active as an RN and a masters level psychology therapist. This turned my life totally upside down, when I decided to take some time to rest and get back to work. That never happened. Later, I was finally diagnosed and started the marathon of treatments we all go through - and nothing has completely relieved my symptoms.
Being in the psychology field I did a lot of looking at patterns of what "triggered" my deepest depressions and sense of loss and grief…. I believe that by being aware of what got triggered (my worst fear from unhealed psychological damage) during times of heavy flare-ups I was better able to cope with the illness and help take some of the excess stress off an already taxed immune and emotional and physical systems. I have gained a sense of control about what is happening and why, and how I can help myself not allow the stresses to get a "toehold" along with all of the rest, and I'm doing much better.
In summary, I believe that as part of dealing with these two illnesses it might benefit patients to look at the psychological side of what is being stirred up and contributing to the illness and making it more difficult. My husband is a psychologist [who deals a lot with] chronic pain clients and CFS/Fibro, and they benefit tremendously from the therapy. I hope this may benefit someone else. It has saved me from a tremendous amount of depression and pain and loss of energy. – Sophia