Letters On Other Experiences, Suggestions, and Question

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On Vitamin D Deficiency and Fibro

I have suffered from Fibromyalgia for many, many, years. Recently… my internist…ran a 25-hydroxy Vitamin D test. The levels show normal as 34 to 100. Mine was only 17!!! She told me that new research is showing that deep bone and muscle pain that is sometimes misdiagnosed as Fibromyalgia is actually low Vitamin D!! She started me on an oral supplement of 1,000 IU daily, and referred me to a rheumatologist. I am already feeling less crampy muscles and deep burning pain – it has been 3 weeks. I have also gone outside for 10 to 15 minutes of sun WITHOUT sunscreen… I bought the book, The UV Advantage by Dr. Michael Holick [ www.uvadvantage.org/home.htm], and was shocked to see the amount of D deficiency in our country. I looked back at all my medical records (I always get copies for my files), and even when I had been seen by the endocrinologist, he didn't run a vitamin D. In fact, NO ONE HAD!! I called my parents in Utah and asked them. They had not been tested ever, even though they thought that my dad had Paget's disease last year, due to his severely bowed legs. Both of my parents went and got tested, and they were both severely vitamin D deficient! And my dad's feet have hurt for so many years, he can hardly walk due to the pain! My mom had been diagnosed with Fibro like me. I thought that you might want to have this info to check into. – Laurel Note: See also “Vitamin D Deficiency Associated with Anxiety and Depression in Fibromyalgia,” at www.immunesupport.com/library/showarticle.cfm/id/7227/

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Tissue and Blood Bank for FM Research?

I am trying to find a way to donate my body/brain to Fibromyalgia research… Please help me in this matter. – Beverley Note: We know there is now a tissue and blood bank for CFS research: The Casey Fero ME-CFS Tissue and Blood Bank, which you can read about at the Wisconsin CFS Association Web site www.wicfs-me.org/casey_fero_blood_blank.htm. Does anyone know if there is one for Fibromyalgia studies?

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Australian Researcher Describes “Radical Theory” Linking All FM and CFS Symptoms to Recently Identified Protein

Hi from Australia: Not sure on what criteria you are needing to post information of new thoughts on the cause of CFS/FM, but thought that some research that is currently being undertaken in Australia should be shared. Associate Professor Donald Staines from the Gold Coast has linked all the symptoms of CFS and FM to a recently discovered protein called Vasoactive Neuropeptide (VN). His research is in its first phase. What's just as exciting, if this is found to be the link of all these symptoms, is that the Vasoactive Neuropeptide can be tested for. Yep, a ridgy-dig* illness with a blood test to prove you have it. I have just read a book he has put out [Vasoactive Neuropeptide Autoimmunity]. It is well written, taking you step by step through the actions of VNS and their links to CFS/FM. It is written by a researacher – so not in layman's language, but well referenced. I know that there has been a roller coaster of hopes and promises. This book offers no cures, but does give direction to future research… I am reluctant to post the details on the message board… until the first results of research come back later this year. You can [read about and] purchase the book though www.stainespublishing.com – Chris Newton *Meaning “Genuine, honest, original, straight” according to the Aussie Slang Dictionary at www.Dunway.com/html/aussie_slang.html

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What About Accuracy in Naming FM? I have FM, but I am still interested in how the CFS name change works out. I am not happy with the FM name, either, since it does not begin to describe the range of symptoms and concerns that come with what I suffer. Is there any movement to change the FM name? I know that it has carried a variety of names and misnomers in the past, but is FM all that much better? – Kenneth

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Finding New Doctors Produced New Hope Dear ProHealth: I am so glad that I found you almost a year ago, because you have answered so many questions! Because of you I pressed on to find a new group of doctors who really understood FMS & CFIDS and didn't think I was crazy or depressed. Although I am depressed, I keep telling them it's because of everything these conditions have caused me to lose or give up. But, I'm starting new, and actually have hopes and a goal for the future, the biggest goal is to be able to get out of bed and participate in my oldest son's wedding next spring. I have to be OK! Although I've got a long way to go, you and the members give me hope that I can conquer this either partially or fully! Down with the FMS/CFIDS and up with life! – Sandi

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New Health Strategy Began with Cognitive/Behavioral Therapy I am truly amazed by this recent "Dopamine Hypothesis." When I think hard about what could have triggered my Fibromyalgia in the first place, all I could think of is all the stress I've had in the past as being the cause. I have been getting cognitive/behavioral therapy which is helping me to de-stress myself, which has caused an easing up of my anxiety, as well as alleviating most of my Fibromyalgia pain considerably! …Unfortunately, I lost my job three months ago due to my many absences owing to anxiety, depression, Fibromyalgia flares… the list goes on. However, this was a blessing in disguise. I almost had a nervous breakdown when I left my job, and my anxiety and depression swirled out of control. I needed to take a step back, think of how I can best take care of my needs, and then put my thoughts into action. In addition to my cognitive/behavioral therapy, I have made visits to my rheumatologist, have had talk therapy, physical therapy (for my back/hip), and chiropractic care, etc. I have always put my family's (medical) needs before mine, and now that my kids are older and out of the house, and I am out of work on disability, I have made many changes in my lifestyle to enable me to think more clearly, rid myself of anxiety as much as possible, think positively every day no matter how hard that can sometimes be. Thank goodness for organizations such as yours, who do so much research on Fibromyalgia. Hopefully with all the research being done, there will be more answers to the Fibromyalgia puzzle. Thank you! – Janet

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Won’t Give In

I have tried every medication out there for Fibro and CFS. Nothing works long term for me. My best form of beating it is to stay busy, stay active, stay away from depressing people, don't give in to the condition. – Yvonne

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