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My Life with Fibro: The Fresh Face of Fibromyalgia on the Web
Kate Update: January 4, Arizona, Mayo Clinic
I've pondered how best to relate the events of the last month, and have decided to be most open and share the notes I wrote for myself , while in Arizona. These will read a bit more like a journal than you may be accustomed to, but I make no...
Kate Update: What is Possible and Getting Lost
Those who love me don't understand why I have not written. In fact, I do not understand why I have not written. They remind me I committed to tell you about the health issues I face, so we may create a positive and fresh community of folks who strengthen each...
Kate Update: Please Forgive Me
I know I should have something to say. I know that you all understand me more than most. I know I owe something to all the wonderful people who have had me in their prayers over the past three months. I really do. In fact, I think I will spend the entire...
Kate is spent. She is enjoying the Christmas season immensely. She is having a rough month. She is smart enough to know the previous two statements can both be true. She is fighting brain aches, and dizziness, and for control of her appendages. She is waiting to go to Mayo. (And is quite...
Is it just me? My Life with: Postural Orthostatic Tachycardia), Part 2
2009 It was just a little dizziness. Or maybe I was just lightheaded. But it wouldn't go away. Maybe it was my ear infection (I've had two this year, what's with that?!), or the medication for the ear infection. But after a week, I'd had enough. My doctor was quick to...
Is it just me? My Life with Postural Orthostatic Tachycardia
1985 When I was six months old I began to throw up and continued to do so until I became non-responsive. I was dehydrated. They admitted me to the hospital and said I'd be out in 24 hours... when my heart rate came back down. It never really did, so they...
Fibromyalgia and Chronic Fatigue Blog
National Thyroid Awareness Month: Thyroid Testing
Last week, we talked about some red flags of thyroid problems—sudden weight gain or inability to lose fat, fatigue or insomnia, chronic sinusitis or lingering infections, for example. Perhaps you decided it was time to get an expert’s opinion, and if so, your doctor will probably want to perform thyroid...
National Thyroid Awareness Month: Red Flags to Watch
Happy 2010! We hope the first month of this new year has started off on the right foot for you—and did you know that January is National Thyroid Awareness Month? Here, FFC’s Kelly Boulden, MD, gives a heads-up on when it may be time for a checkup on your...
Question of the Day: What’s a biofilm?
Check out what FFC’s Werner Vosloo, ND, MHom, has to say about biofilm communities for CFS and fibro patients! Biofilm communities are a bug survival strategy in FMS and CFIDS patients. These communities are well-structured colonies of highly interactive microorganisms, such as bacteria, viruses, yeast, and mycoplasma. Biofilm structures make...
CFS and XMRV on the ‘Dr. Oz Show’
If you missed the recent “Dr. Oz Show,” where Dr. Mehmet Oz and Dr. Donnica Moore discussed chronic fatigue syndrome, and a retrovirus that has been linked to the condition, don’t worry—we’ve got a recap here for you. A U.S. research team recently found a retrovirus called XMRV in the blood...
Many who suffer from Fibromyalgia and/or Chronic Fatigue Syndrome at one time or another find themselves depressed over how they feel, the difficulties in finding effective treatment, lack of energy, the ongoing pain, or how loved ones respond to their illness. For many just being “happy” is a daily task...
Isoprinosine Update: Immunovir — A Promising, Low Cost and Safe Prescription Antiviral
By Alina Garcia MD, Fibromyalgia & Fatigue Center of Las Vegas Recent findings presented at the 2009 International Association of Chronic Fatigue conference in Reno, Nevada Conference by University of Miami, researchers revealed promising potential for Isoprinosine (ISP) in the treatment of Chronic Fatigue Immune Deficiency Syndrome. Sixty one patients were studied,...
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It’s one of those nights again . . . One of the ones where the pain is so bad that sleep is im...
Jamie Heywood has intertwined social networking with the journey of discovery. His brainchild, Patie...
whose there? Okay, my first day using my left hand and it is slow going. Today, after a long day wi...
Stress: A Polemic of the Modern Age
Stress…a Fact of Modern Life.Stress may appear to be a disease of modern times caused by fast moving...
Feel overwhelmed and Stressed Out? Cold Laser Therapy May be the Answer
Pacific Laser Therapy Centers powerful stress management program combines cold laser therapy, and po...
Irony in the Great Cosmic Theater
Lights, Camera, Action! I recently received an email about my high school’s fortieth high school reu...
Fibromyalgia Haven
What is Your Voice Telling You?
I was standing in my favorite Starbucks last week. My mood was heavy and pensive – wondering about my current path and recent choices, lamenting my time away from FibroHaven – and then I read this on the cover of a beautiful book of quotations: Throughout your life there’s a voice...
What did you do? I’ve been asked this question a lot since returning to work. What did you do before this? It is an interesting question and I don’t think I have decided how to answer it yet. Do I tell them about the accident that brought my life to a screeching hault? Do...
The Potential of Today and the Promise of Tomorrow
I am thankful. I am thankful for my smart, funny and charming husband. I am thankful for the years he selflessly held us together while never making me feel inadequate. I am thankful for his companionship, his commitment to our partnership, and his unending loyalty, support, and love. I am thankful for...
More Change, More Adaptation, and a New Door
I think you will be noticing a change in the tone of FibroHaven. For the past year I have been writing about all the changes I have made to improve my health – yoga, nutrition, support group, writing, etc.. Now that I am a working girl again, we will get...
Things I Love #9: Gluten Free Peanut Butter Cookies
I am an adventurous cook. I experiment with ingredients and flavors, seldom making the same dish twice. My husband always encourages me to write my recipes down, but I much prefer to “wing it” and see what tasty concoction I can create next. All the things that make me a spirited...
Relaxation Technique for Pain Control
Week two of the Pain Coping Skills research study. Following up on the Progressive Relaxation guided technique of week one, in week two we learned a simple and useful technique called Mini-Practices. Mini-Practices For relaxation to benefit you the most, you need to learn how to relax and calm yourself upon your command. This...
FightingFatigue.org
GERD, ME/CFS & Fibromyalgia Relationship
For the past month, I have been getting extremely sick at least once or twice a week on my stomach – but I’m not throwing up. I feel like I have to vomit, but I can’t get anything to come out. I started having severe pains in my stomach, sides,...
XMRV and implications for CFS – Part 3 of 9
Below is part 3 of the XMRV video series. I have also posted Part 1 and Part 2. Related posts:CFIDS Association XMRV & Implications for CFS The CFIDS Association recently had their webinar on XMRV and... XMRV & Implications for CFS – Part 2 of 9 Below is part 2 of 9...
XMRV & Implications for CFS – Part 2 of 9
Below is part 2 of 9 of the XMRV webinar. To view part 1, click here. Related posts:CFIDS Association XMRV & Implications for CFS The CFIDS Association recently had their webinar on XMRV and... CFIDS Association Online Webinar on XMRV The CFIDS Association is featuring an online webinar on Monday,... XMRV & Implications...
XMRV & Implications for CFS – Part 1 of 9
This is part 1 of 9 videos on XMRV & Implications for CFS by Dr. Lucinda Bateman of the CFIDS Association. I will be posting all 9 parts – one video each day. This was part of an online seminar that was held on January 18th. Related posts:CFIDS Association XMRV &...
Leadership Change for CDC’s CFS Research Program
As of February 14th this year, William Reeves will no longer be head of the CDC’s CFS Research Program. He is taking another position and will be replaced with Dr. Elizabeth Unger, who will serve as acting chief of the Chronic Viral Diseases Branch, the unit within CDC that houses...
ME/CFS Pain & Fibromyalgia Pain – Can You Distinguish Between the Two?
Chronic Fatigue Syndrome patients suffer from pain as well as Fibromyalgia patients. Sometimes it can be hard for patients with both to know whether their pain is coming from the Fibromyalgia or the ME/CFS. For me, I can usually tell the difference because I had ME/CFS first. I know that...
About.com Fibromyalgia & Chronic Fatigue Syndrome
FDA Approves Pain Drug for Opiate-Tolerant Patients
NEWSBRIEF: The FDA has approved morphine sulfate oral solution for people who are opioid-tolerant and have moderate-to-severe acute or chronic pain. It'll be available in doses of 100 mg per 5 mL or 20 mg per 1 mL. This is the first time this drug has been available at this...
New Data on Ampligen's Immune Impact
NEWSBRIEF: The immune-modulating drug that's so far failed to gain FDA approval as a chronic fatigue syndrome treatment now has some data backing its use in cancer immunotherapy. Stanford University researchers say Ampligen (rintatolimod) "shows promise" at making some cancer immunotherapies more effective. They also say that Ampligen enhanced T-cell...
Reeves Is Out -- New Directions for CDC's Chronic Fatigue Syndrome Research?
NEWSBRIEF: Is this the change chronic fatigue syndrome advocates have long awaited? According to the CFIDS Association, as of Feb. 14 Dr. William Reeves will step down as head of the CDC's Chronic Fatigue Syndrome Research Program. It appears that, at least temporarily, Dr. Elizabeth Unger will head the program....
WPI Presentation on XMRV & Chronic Fatigue Syndrome
One of the scientists behind the XMRV discovery, Dr. Judy Mikovitz of the Whittemore Peterson Institute, recently gave an in-depth lecture on XMRV and its implications for chronic fatigue syndrome, other neuroimmune diseases, and possibly XMRV-related cancers. She covered a wealth of information over 2.5 hours. Here's a...
XMRV & Chronic Fatigue Syndrome: What Can Retroviruses Do?
The discovery of XMRV in 68% of people with chronic fatigue syndrome has raised questions for which we likely won't have answers for a long time. In the meantime, however, scientists do know certain things about XMRV and retroviruses in general. Recently, Dr. Lucina Bateman and the CFIDS Association put...
What's the Difference Between a Disease & a Syndrome?
Classic Blog: July 22, 2008 Among the many confusing things you have to deal with when trying to learn about fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS or ME/CFS) is the difference between a disease and a syndrome. When doctors who don't believe in FMS or ME/CFS are quoted in articles,...
The Fibromyalgia Experiment
For the past few months I’ve been following a guru who shall remain nameless. I’m really into the law of attraction, not because I believe it but because I really need something like that to work for me. This guru at first seemed to really be into that as well...
Sometimes I feel normal. I take care of my house and I have my life and I work at my job. Sure, the entire time I’m in pain and all of these things are done differently because of fibromyalgia. I have to work from home, and any modern furniture always...
I don’t have a lot of energy because of fibromyalgia. I also hate the cold because of fibromyalgia. This lead me to being so exhausted when I woke up that I couldn’t believe it was morning because I was still so tired. It was one of those days when it...
I always find this conversation funny. It seems to happen a few times a week. Them: What’s Wrong? Me: I’m tired (Also interchangeable with I don’t feel good.) Them: Did you sleep good last night? Me: Of course not (Secretly thinking I have fibromyalgia. I don’t need a reason to be...
I would have to say that there’s a few pluses to job frustration. Actually, there’s only really one and here it is. When I hate my “day job”, I’m that much more motivated to get my websites up And running. I also find myself writing thousands of words for residual...
Ever since I started writing articles a little over a year ago I knew of the need to diversify. I knew that companies could go under any time. So I picked a few residual companies and then for my up front payment needs got a few different jobs at the...
The Fibrochondriac
Traveling without a computer makes it difficult to blog. So I haven’t been blogging, nor responding to comments. I’m sorry. I’ve been home for three days and flaring like crazy. Foggy, oh so foggy… so still not writing. Quick LDN update: I stopped taking the LDN while I was traveling because the...
I don’t know if this will work but I’ll give it a shot. I’ve been up in Washington and things have been a little crazy. I didn’t bring a computer with me so no posts, sorry. I’ll be back home the beginning of February and will catch you up then. Promise! - Posted...
Health Care Reform was a bastard, but it was our only bastard… and I’m in mourning…
I know I don’t post much about health care reform. I should because I’m fairly rabid about following the progress of the bill. Yesterday afternoon I was a pretty happy camper after going out for coffee with two of my most favorite people in SoCal…I had a blast and was riding...
Yesterday I was going out to coffee with some friends. To most people that is no big deal but for a hermit like me…eh…I wanted to make sure I didn’t crash so I took one of my long-acting narcotics. Oh big BIG mistake. Last night was hell and when I woke...
The latest installment of my Low-Dose Naltrexone Chronicles. You’re not gonna believe this…
Where do I start? Well, I guess chronologically works. Two Weeks Ago My New Year resolution (I hadn’t thought of it that way, but it was on New Years that I made the impulsive decision…so whatever) was to go “cold turkey” off the narcotics. I was tired of slowly cutting back on...
Low-Dose Naltrexone (hint: ‘nothin’ yet!)
This is just going to be a quick post. Haven’t started the Low Dose Naltrexone because when titrating down off of narcotics (can’t be on both narcotics and LDN; it’ll kick me into withdrawal. Not fun.) it takes FOREVER. Doing it slowly is supposed to avoid the rebound pain that...
A Sofa with a View
My Thoughts on Fibromyalgia and Its Effect on My Children
As my Fibromyalgia and what I am beginning to suspect is the added bonus of Chronic Fatigue Syndrome (how can you have Fibro and not Chronic fatigue?) is at an all time high on the Flare-o-meter, I have been seriously considering the affects that having a chronically ill mother has...
I have been sadly neglecting my blog routine, among other things. Winter has cast a shadowy spell over me and the desire to write has been nil. I feel like I have nothing to say. I have been reading others blogs and thoughts but have not felt like sharing. Today,...
Last night my husband let loose all his pent-up, seething anger about my illness that he silently keeps at bay from me. There was a Surprise Birthday party for one of his friends and he was fuming because I did not want to go. I have been in agony lately...
The news has been filled with the horror that has descended upon Haiti. When such a devastating natural disaster strikes we are reminded how fragile and precarious human life can be. I can not imagine the scenarios being played out there. As I sit here snuggled in my warm and...
The 5 Stages of Grief - Fibromyalgia Style
I have come to the point of acceptance (thanks, hold the roaring applause) concerning having a chronic illness. It has been a rough few months since my Fibromyalgia sentencing in September but I feel settled into a familiar co-existence with the "F" word.I have spent endless hours on the...
Its Already Been a Long Cold Lonely Winter ...
"Little darling, it's been a long cold lonely winterLittle darling, it feels like years since it's been here"- the BeatlesThe past few days I have not felt like writing or creating or basically moving. My brain and body are weary and feeling incapable. My head has been heavy and I...
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