Fibro info
By youdontsay
@youdontsay (3497)
United States
December 30, 2007 12:35pm CST
When I was first diagnosed with fibromyalgia ten years ago there wasn't much information available. The books I read were mostly written for professionals in the medical field and hard to understand.
I think it is great that now there is lots more resources available. I've found a few lately on line:
www.fmnetnews.com This is the Fibromyalgia Network and contains easy-to-understand explanations for symptoms, treatment, links to other sites, doctor referrals and more.
www.immunesupport.com This site boasts three million visitors annually. It give you access to over 3,000 fibro and cronic fatigue syndrome articles and abstracts, a tip of the day, message boards, a chat area, as well as links to many other sites.
www.myalia.com This site is sponsored by the Oregon Fibromyalgia Foundation. It has a section on herbal and dietary solutions for symptoms, referral to relevant literature, and current research. It also has a section on Mexican artist Frida Kahlo wo is said to have had fibro.
www.fibromyagia.com This site is an online pain management resource in its sections on FAQs, chat, definitions. It even has a section on the "fibro five": ibs, cfs, fm, migranes, and interstitial cystitis.
www.paincare.org This is the site of National Foundation for the Treatment of Pain which supports patients suffering from "intractable" pain, as well as for their families, friends, and doctors. There is also information on the legal aspects of pain treatment and patients' rights.
www.partnersagainstpain.com This site has special sections for patients, caregivers, medical folks, and institutions. It also has medical definitions, info on drugs and other treatments, and articles on pain management and a pain assessment test. They include links to pin-support communities and suggested reading list.
It helps to know that we are not alone and that there are steps being taken to find not only the cause but also treatment that works.
1 person likes this
2 responses
@novataylor (6570)
• United States
30 Dec 07
Wow! Thanks for the info. I suffer from fm also - was diagnosed nearly 12 years ago and boy, are you right! There has been virtually no info available till recently. Let me ask you, when you sit at your computer and type on Mylot, do your shoulders burn like fire? Mine sure do, which makes it so hard participate here in this forum, and I do so enjoy Mylot. But, I'm going to use my Bio-Freeze gel and try to get back to it. Again, thanks for the info. And good luck to you in your quest for feeling better.
1 person likes this
@youdontsay (3497)
• United States
31 Dec 07
No, I don't have burning sensations. "Just" pain and aches. Posture plays a big part in how comfortable keyboarding is for me. I have a lumbar support at my back and use a wrist bar. It is important to remember to move around frequently. Stretch. Get up for a glass of water.
Hope you are myLotting comfortably!
@jrcrow79 (34)
• United States
27 Feb 08
lemme guess...getting up is difficult for your joints?..lower achyness in your back, moody, sugar cravings, difficult to stay focused?..have you heard of Dr. Paul St. Amand..lives in Marina Del Rey Cali. He is the #1 FM Dr. in the entire US..his patients litterally travel from as far as China/australia/russia/japan to see him. He has been researching FM for 40 years..I have been his patient for 40 years. www.fibromyalgiatreatment.com. Trust me if you have FM you aern't nuts..chek out the website and pls feel free with any questions you have ;-). See FM is a genetic kidney disorder which bring on (Illness of symptoms) which include some of what I asked if you suffer from because the kidneys overproduce calcium in which the blood travels it to the body and the calcium gets stuck on the muscle--anywhere u have muscle u can very much have calcium-like pouring cement on a rope kinda thing. The calcium gets bigger as your life goes on with stress and anxiety and so forth. The cure for life is Guaifeneson a 600mg white pill that does nothing but dehydrate you like mucinex but breaks up the excess calcium in your body..the ONLY catch to it is there is a "protocal" to follow..NO plant life ingredients maybe be consumer/touched (24 hour canellation of the guai from working) everytime you do..includes your makeup, lotions, drinks..coffee is ok as long as you aernt hypoglycemia..lemme know if u have any further questions
e
Eric
1 person likes this
@Perspectives (7131)
• Canada
9 Mar 08
Hello..
This is a subject close to my heart because I was diagnosed a number of years ago but have not had any flareups since taking a multi-level approach to my healing. I sincerely hope you find your answers as I found mine. Being that I view everything in life in relation to my soul growth my experiences with fibro taught me a lot of valuable life lessons about pacing...not driving myself...focusing on what REALLY matters over what I used to THINK mattered.
I have written a few articles about it and my approach included acupuncture, body-work, brain science CD's soaking in our bubble jet tub with Epsom Salts, meditation, dietary changes, attitude adjustments, massage, prayer, yoga...and making sure I do not expose my body to cold, drafts or dampness.
Accepting that I had to learn to pace myself was the key to my complete recovery. Clients that I work with who have fibro find that the most challenging aspect because for a variety of reasons they have dissociated from the signals their body sends them.
Anyway, good to shine a light on this important health challenge...thanks!
Raia
1 person likes this
@youdontsay (3497)
• United States
9 Mar 08
Yep, pacing was the hard part to learn. We in our culture don't get much support for doing less! It is easier to pace myself since being retired. It sure didn't go over well when I was working for the State! :-)
And I still sometimes fail to notice my body's signals until I'm well into the pain cycle. It is kind of strange that we are taught to ignore our own internal wisdom.
