The ICI Experience:

I noticed this as soon as I started reading Endo and Pelvic Pain websites and blogs, a few months after these new symptoms (yes, I'm going to write all about it; I just need to get into the swing of blogging again before jumping into the deep end) started in September of 2012:  Many of the people who write about these topics call themselves "sufferers." I started being diagnosed with ICIs  in 1989 (Endo, Fibro and multiple food allergies that year) and I quickly learned that I preferred to refer to myself and others as survivors or persons with chronic illness X .  Even referring to myself as a fibromyalgiac, for instance, tends to give the illness a feeling of power over me.  None of the ICIs I have define ME, so I don't use terms like that either.   Sufferer connotes a victim mentality to me.  It's OK to wallow in the pool of being a victim for awhile, but I don't think anyone will get out of that sucky, I-feel-sorry-for-me-so-you-should too plac...

The other day I wrote about FM being a whipping post for the media among others ( TV show Bones uses fibro as an excuse for murder ).  After writing that post I was inspired to listen to the song Whipping Post by the Allman Brothers Band ( take your choice of the 5 minute version or the 22 minute version) and to check out the lyrics (including a nine minute video of the band, before Duane Allman died). Ah, the music of my youth.  But back to the here and now.  I was then inspired to rewrite these classic Southern Rock lyrics.  Here's the result. I been run down, I been lied to, I don't know why I let that mean doctor make me a fool. He took all my money, and my new car. Now they’re usin’ all kinds of media They’re makin’ fools of us ever’whar. Sometimes I feel, sometimes I feel, Like I been tied to the whipping post, Tied to the whipping post, Tied to the whipping post, Good lord, I feel like I'm dyin'. Some friends tell me, that I’m such a fool, ...

Bones is one of my favorite TV shows; I'll just be glad when fibromyalgia is replaced as the whipping post by some other new and little known about disease.  Unfortunately for the new disease, that WILL happen! We're getting a lot of TV time from the pharmaceutical companies, but I dream of the day when people with FM will be guests on the talk shows, the news shows, something positive about us will be portrayed on the entertainment shows and no one anywhere will dare to make a mockery of such a horrible disease.   (Yes, I know they say it isn't a disease.  It's just a matter of time.  Mark my words.)  So I watched an episode of Bones awhile ago and the murderer was a teacher who, when she was caught said she had FM and that she had pushed a guy into a poisonous fish tank because he had taken a lot of her money for a false cure to FM; then she said killing the guy must have cured her FM because she hadn't felt any pain since! Puh-leeeez! Here's the te...

From the National FM Association:  Update on FDA rejection of Sodium Oxybate for treatment of fibromyalgia. Here's a link to the first post I did on the topic of Sodium Oxybate for FM:  The FDA is considering approval of another new drug for Fibromyalgia that could help with sleep, fatigue and pain. Sodium Oxybate has been rejected by the FDA so I guess that's that. Some day someone will figure out why I get NO stage 3 or 4 Delta sleep at all, ever (see Finally - sleep study results! ), or they'll come up with a drug to treat the problem safely.  Until then I wait patiently, if also constantly exhausted no matter how much apparent sleep I get. I did get a nice response from the FDA to my letter of support for Sodium Oxybate for the treatment of fibromyalgia.  It's below. The response  also contains a link to a transcript of the meeting where info was presented and discussed by a panel, and to additional meeting material s. On this web page the Augu...

Mixed media Sleeping Beauty , originally uploaded by melanie_hughes *. The NFA is asking people with Fibromyalgia to email or fax the FDA a letter of support for approval of a new drug for FM.  The NFA has even provided a basic letter for us to use: there's one for people with FM who have taken the drug, sodium oxybate (generic name) or Xyrem (brand name), and another letter for people with FM who support approval of sodium oxybate but have not actually taken it themselves.  Go here to see my letter.  The NFA says on October 11 the next important step in the process for FDA approval of sodium oxybate will take place, so be sure to get your letters in before that date. I've done a lot of research on this medication, before and after I tried it.  If you are wondering some of the same things I was, maybe the information and links below will help you. An FDA panel, or advisory committee has actually already said no to sodium oxybate .  I think the actua...

i do want to sleep but i cannot do it right please do not blame me Dedicated to my mom, who in spite of her best efforts, cannot understand the difference between a sleep disorder (no stage 4 sleep AT ALL) and a lack of good "sleep hygiene." But she's not the only one; this article, Fibromyalgia and Sleep , which as I'm reading it I'm thinking totally "gets it", ends with " For tips on good sleep hygiene, read "Fixing Sleep Problems May Help Prevent Fibromyalgia." " Sheesh. There are good folks on the trail of real answers. I just wish they'd hurry up already. Click the pic for online access to or for a DVD of the conference. *Haiku = 5 syllables in the first line. 7 syllables in the second line. 5 syllables in the third line.

From Medical News Today, FDA Approves Fibromyalgia Drug - Savella(TM) (milnacipran HCl), A Selective Serotonin and Norepinephrine Dual Reuptake Inhibitor "Although the exact mechanism by which Savella improves the symptoms of fibromyalgia is unknown, some researchers believe that abnormalities in certain brain neurotransmitters may be central to fibromyalgia. Savella blocks the reuptake of both norepinephrine and serotonin, with greater selectivity for the inhibition of norepinephrine reuptake in vitro (does anyone know what the term in vitro means in this context? Emphasis added by me.) . This may be the mechanism by which Savella acts to improve the symptoms of fibromyalgia." and "The efficacy of Savella was established in two US pivotal Phase III clinical trials involving 2,084 treated patients (1,460 Savella; 624 placebo), which showed that Savella demonstrated clinically significant improvements compared to placebo in treating fibromyalgia. The first study was 6 mo...

Well, it started with the logo of the Fibromyalgia Association UK . She's a gal and she seems to have polka dots on her. Those of us with Fibromyalgia recognize it as a diagram of FM tender points. Polka Dot Gals is also a UK organization dedicated to raising awareness of Fibromyalgia within the press and the media, and they're in the process of a great calendar fundraiser. I've got my calendar and it's wonderful! It's very artistically done and of excellent quality. They got the idea to do this calendar as a fundraiser from the original Calendar Girls of Yorkshire, on whom a movie of the same name was based. Bianca Embley is the founder and Director of Polka Dot Gals, and I had the opportunity to meet with her at ILAP 2008 (which I haven't NEARLY gotten started writing about, what with my additional diagnoses and medical treatment making me sicker than I was in the first place, but I will, I promise!). She is a charming and gracious young lady. Funny, s...

Like we don't already have enough stigma to deal with, movie people have to give their wackiest characters Fibromyalgia, and make them hypochondriacs too? Here I am flipping through Sunday afternoon movies and this one on LMN called "Her Only Child" caught me because the daughter was saying if her mother wasn't complaining about her Fibromyalgia then it was her thyroid and if it wasn't that it was something else, and the daughter wondered how much of it was even real... sound familiar? This movie is called "Maternal Obsession" on the producer's website . Oh yeah, the maniacal looking woman with the gun is the one with FM. LILY (Nicholle Tom), 31, is an average woman with an average life. She's pretty, friendly, and does well at her job as a claims analyst for an insurance company. But there's one facet of Lily's life that just isn't normal-- her mother. A couple years ago, Lily moved back in with her mother INEZ (Gwynyth Walsh), 60, t...

Here's my complete receipt from the FFC. Click on the individual page to see it full size. Page 1 of the receipt shows tests I was given and their costs, and my diagnoses. Page 2 details the "Intraveneous Infusion." I'm going to ask more about this IV drip at my next appointment. I think it might have helped me to feel better but I was totally wiped out for the rest of the day of the infusion. The majority of the cost of the drip is for the administration of the infusion. Huh. Must have been to cover the private room they set Mom and I up in - she got her own recliner. She liked that. She read for awhile then took a nap. I sat in my recliner for two hours trying to hold my arm in the right position for the drip to keep on drippin'. I'm supposed to be having these infusions weekly, but it's not possible since I live so far away. I will ask if a local doctor's office could administer this IF I decide that it's really helping. And next t...

Not. So I won't have that lousy sense of accomplishment from completing the NaBloPoMo challenge. I've gone the way of my predecessor with FM who tried to blog for a month, The Princess of the Business World and Fibromyalgia . I gave it up in favor of my health. Here are some nuggets from The Princess: "Blogging more was just that, more. It wasn’t better, it wasn’t really helpful. I pushed myself to the brink." "This experiment also could’ve been entitled “how to take all of the fun out of blogging & turn it into a very stressful environment”. I burnt out. I started hating blogging." "I did discover that I’m on the right track with how & why I work. Le sigh." So she didn't really fail, she discovered she was on the right track before this particular experiment. I suppose I could say the same. I was on the right track before I discovered that blogging every day won't work for me right now. But I also discovered a few things ...

HealthInfo Island on Second Life Yesterday I visited HealthInfo Island in Second Life for the first time. I teleported down close to the beginning of the Path of Support, then I meandered down the path, which is a line of billboards of the over 60 different support groups found in Second Life so far. A couple I found memorable are the board for the Online Schizophrenic Hallucination Demo (I'm going to have to try that) and of course the Fibromyalgia Support, but there is also a Neurological Disorders Research and Support Committee founded by Maria Mouroutsos. This is the first, and only SL group for neurological disorders, for those who have them, and for friends and family that want to learn. This group shares research information, tips on how to cope with some of the strange, and rheumotological effects, like fibromyalgia, and also to just share funny things, to help ease a little bit of the frustration. This is also the first time I've actually felt like fibromyalgia mi...

We wish getting over it was as easy as Dr. Scherger makes it sound; or as this pole vaulter makes it look! This post is a sequel to Chronic Monday: Be Well Not Medicalized 4 FM...? . I have to admit that I decided at the last minute to take it easy on Dr. S. I found a much more in-depth description of his career (on RevolutionHealth.com, who would have guessed?), and in addition to his medical degree he also has a Masters of Public Health (MPH). His first job after school was as a migrant health physician for two years in California. Now he may have had to do this to pay off a student loan or something, but still he did it. And the rest of his record seems rather stellar and exemplary. I kinda hate to drag him through the mud for one blog post, no matter how inaccurate, insensitive and insulting it is. So I'm just going to pull some sound bites out of the 25 or so comments that were made to his post and to my review of his post, all of them negative, then in a future post I...

I'm writing about the environment today, for Blog Action Day. Years ago, coal miners took canaries down into the coal mines with them, because canaries are more sensitive to the poisonous coal gases than human beings are. When a bird started acting sick, the miners beat a hasty retreat. The canary usually died. The following is an excerpt from "Canaries In A Coal Mine", by Kevin Gregg, DC, from the Chronic Syndrome Support Association site : "Have you ever considered that those of you experiencing FMS, CFS, MCS and GWS symptoms might simply be canaries down the collective mine shaft? What if, like those canaries, you were simply the early warning system for this culture. What if your experiences were exposing mounting health risks for everyone? You are, I suspect, at the far end of a continuum that all of us are on to varying degrees. Placement on this continuum depends only on the degree a person is stressed, starved and poisoned by their life and environm...