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Monday, November 10th, 2008
9:36 pm
It has been obout 6 months since my last post, I don't know where to start.

Still battling with the short/long term disability insurance company, that I have paid into for 9 years, to get money deemed due me by my doctor, therapist and rheumatologist! It is now in the hands of the state department of commerce. They are looking into why these dorks figure that I don't deserve what I paid for, just because I have lived with fibro (a progressive syndrom) for years. I guess they can't figure that people get worse over time.

I am still waiting on the appeal to my Social Security Disability claim as well. I think it may help that I have disability plates for my car, but who knows for certain.

My physical issues have only worsened, and now that the cold is setting in, movement is even harder. If we had the income of disability, I would be able to get a Y membership, where I could do some water therapy, but can't do it on just malgoroth's income. We are able to just barely make our necessities, and sometimes can't even do that...

Even with this, I am not really in a bad place. I am, at times, but am trying to work those out.

Am working with my therapist on my PTSD; identifying the things that caused the trauma, and working to make a conscious move on how they impact my life now.

Hard times are ahead with this, I know. I am already getting more nightmares and flashbacks, out of the blue at times. Feels really dumb to have to go hobbling (would be running if I could!) out of a store because you smelled something that triggered a flashback!

Ah, good times ahead.
Monday, July 28th, 2008
4:37 pm
I've been stressing out like crazy recently.  What with the move coming up, we're packing and going insane, because we can't find a house.  Thankfully, the owner of the house we're in keeps extending HER date by when we have to be out.  They moved to Hawaii, and she keeps moving when she's going to be able to get back to the mainland.  Granted, we're having to pay rent until then, but at least they're not kicking us out.

I'm being so easily distracted it's not even funny.  When I can focus.  I guess that's the problem.  I'm having a lot of problems focusing.  I'm exhausted.  I mean completely exhausted, feeling like I haven't slept in a month exhausted.  I know, this is all part of the fibromyalgia, but it doesn't help knowing that it's just part of the disease.  My family doesn't understand that.  They keep telling me that I just have to push through it.  Yeah, it's damn near impossible to just 'push through it' when I feel like my head is full of cotton and cobwebs and my arms and legs are made of wood filled with lead.  I mean, my arms and legs feel like they weigh 200 tons, my head feels like it weighs at least a half ton, while my brain is cotton candy.  I just want to go to sleep and sleep for the next year.  Is this normal for fibro?  I'm guessing it is.

I know that the stress of the move isn't helping me any, with the brain fog and the ditzy-ness.  I know there's an intelligent person hiding inside my head somewhere.  Honest.  I think she's gone into the witness protection program, though.  She's hiding that deep in there.  Right now, I know I'm intelligent, but it doesn't show.

And now, I'm being bitched out for shit that isn't even my fucking fault.  Shit that I have NO fucking control over.  So, WTF am I supposed to do about it?  And the BOB is screaming at me because of shit that isn't even my fault.  Normal.  I want out of this family.  I just want to pack my kids up and take them away from here.  I doubt it's going to happen.  Ever.  Until the bitch dies  Which can't happen fast enough for me.

I just wanna have my own life.  An I'm beginning to realize that it's never going to happen.

x-posted everywhere including my personal journals
Monday, August 13th, 2007
4:59 pm
New Member Babble



This is indeed an interesting community and am pleased as punch to join.


Yes I am pagan and yes I have Fibro as well as the lovely sleeping disorders that come along. I also have an autoimmune disorder called Sarcoidosis  which is no fun at all either. But really it astounds me the degree that Fibro impacts my life….physical, mental, and spiritual!!


I am very interested in conversing on the subject of sleeping disorders…I annoyingly have three…..Sleep Apnea, Restless Legs Syndrome, and Alpha-Delta Sleep. The latter is the most recent of my diagnosis and would appreciate any insight, known treatments, coping skills, and med info if any. There seems to be a lack of knowledge about this sleep disorder but treatment for it may be key to my being a whole person again.


Thanks to those that response!


Late Summer Blessings……Morriganfae


Current Mood: interested
Wednesday, July 11th, 2007
8:58 am
Study News!
X-Post Fibromyalgia, Personal Journal

June 22, 2007 - The US Food and Drug Administration (FDA) announced the approval yesterday of pregabalin (Lyrica, Pfizer) as a treatment for fibromyalgia. The drug is the first one to be approved for the treatment of this painful condition, and it has been shown to reduce pain and improve daily function for some patients.

"Today's new approval marks an important advance, and provides a reason for optimism for the many patients who will receive pain relief" with this drug, Steven Galson, MD, PhD, director of the FDA's Center for Drug Evaluation and Research in a statement. "However, consumers should understand that some patients did not experience benefit in clinical trials. We still have more progress to make for treatment of this disorder."

Pregabalin is already approved for the treatment of partial seizures, pain following rash of shingles, and pain associated with diabetic neuropathy.

Fibromyalgia is estimated to affect up to 6 million people in the United States each year. It affects mostly women and typically develops in early to middle adulthood.

Approval of pregabalin for this indication was based on 2 randomized, controlled, double-blind studies presented at the recent American Academy of Neurology and American Psychiatric Association meetings. These results, in more than 1800 patients, "support approval for use in treating fibromyalgia with doses of 300 mg to 450 mg per day," the FDA statement notes.

The most common adverse effects in these studies were mild to moderate dizziness and sleepiness, the statement adds. Blurred vision, weight gain, dry mouth, and swelling in hands and feet were also reported in the clinical trials. Adverse effects appeared to be dose-related.

"Lyrica can impair motor function and cause problems with concentration and attention," the FDA statement pointed out. "FDA advises that patients talk to their doctor or other healthcare professional about whether use of Lyrica may impair their ability to drive."

Pfizer has agreed to conduct studies of pregabalin in children with fibromyalgia and in breast-feeding women, the FDA adds.

"This is an important day for people with fibromyalgia and a real opportunity to help physicians effectively manage this disorder," said Don Goldenberg, MD, cochair of the American Pain Society's fibromyalgia guideline panel and professor of medicine at Tufts University in Boston, Massachusetts, in a statement issued by Pfizer. "Having a medication approved for use in fibromyalgia, along with research advances, will go a long way to improving our understanding and treatment of this common disorder."

Current Mood: cheerful
Friday, June 29th, 2007
1:51 pm
Hi all,
Some friends of ours are crazy enough to be taking part in Oxfam Trailwalker, a 100km endurance walk or run from Sydney Harbour to the Hawkesbury, overnight, in teams of four, through the Australian bush.They're doing all this as a personal challenge and more importantly to raise money for Oxfam Australia, who work to fight poverty and injustice in 26 countries around the world, including Indigenous Australia.
The need to raise money for important issues such as HIV/AIDS education, sustainability of communities, employment oppertunities to dissadvantaged people and urgent medical and education needs.

Please donate to their team at http://www2.oxfam.org.au/trailwalker/Sydney/team/349#
Help them raise enough money to be able to take part. Every dollar counts and even small donations make a difference.

OXFAM work in partnership with local communities to increase the number of people who have a sustainable livelihood, access to social services, an effective voice in decisions, safety from conflict and disaster, and equal rights and status.

Emma and Ruth
Wednesday, June 27th, 2007
7:29 pm
A yahoo group for invisible illnesses

After the last post, I wanted to send a pointer toward a yahoo group that I have been involved with for awhile now, Pagan Support. It is not only for fibro, although we have many with it, but also for other "hidden" diseases that we fight, Lupus, MS, etc.

Thursday, June 7th, 2007
12:02 pm
Em hotep! I'm a 25 year old Kemetic (I worship the Ancient Egyptian gods for those who aren't familiar with the term) and I have Fibromyalgia.

It was just recently brought to my attention through all the problems I've been having but now that I know what I have, it's a relief for me. I can talk to others, meet fellow Fibro-buddies and find ways to deal with it, instead of running around like a chicken with it's head cut off trying to find out what's wrong with me.

It's wonderful to meet all of you! If anyone would ever like to talk, my contact information is below:

Yahoo: Maauneferset
AIM: Maauneferset
e-mail: sekhmetmeset@templeofmaat.net


Current Mood: blah
1:03 am
Looking for herbal muscle relaxers /brand name meds for FMS pain ??
Greetings  all
For any who I haven't met ... I'm 43 yrs old , single gal .Have had fibro since a motorcycle wreck in 1981 . I've been getting an epidural in my spineal cord for the past 3 years . however over the past few months I've developed severe 10+ painful muscle spasims that begin at the base of my spine then rip up and down my entire spind and sometimes legs and arms . My pain doc tells me this is just one of things that comes along with the FMS becomeing worse and more advanced ...
I'm looking for muscle relaxers . My doc will write scrpits for anything I want to try . But I need some names to give him with . I'm also very interested in any herbals oils , teas etc.


Current Mood: exhausted
Friday, April 20th, 2007
10:31 am
Study opportunity
There is a study about to be launched on the diagnosis of CFIDS and Fibro in pediactric patients. This is US centric and for the age 4-18 crowd. Ping with interest!

x-post fibromyalgia
Thursday, January 25th, 2007
7:31 am
Merry meet
Hi all I'm Dreamwalker I've had fibromyalgia since I was 17 . The fibro is a result of a motorcycle wreck . I've always been a witch but have been a student of magick for the past 17+ years . Over the years I've used just about every herb you can think of to help stop or at least control the pain . I've got rituals to help with the pain and emotions we all go through with this nasty disease . I'm always on the look out for those witches, pagans, Druids , shamans etc. If you'd like to chat my instans messege handle for yahoo is  RavensongRavenstardust@yahoo.com
My handle for MSN is   witchkid@man.com
Just let me know you found me here and I'll be more than happy to add you to my buddy lists ...
Friday, December 1st, 2006
2:51 pm
Notice to CT residents
If you live in or near Fairfield County in Connecticut, I have the best pain management doctor EVER. She's understanding, and helpful, and she listens. You won't ever be seen by a nurse - she sees all her patients herself. She's the best kept secret in Norwalk, and I just want to spread the love to whatever members of the comm can benefit from her awesomeness. If you want her name, just respond to this post and I'll get it to you.

x-posted in every comm I can think of.
Sunday, September 10th, 2006
4:16 pm
searching for a new rheumatologist in georiga. i've already seen dr. morley in savannah (who was good, but is terrible at scheduling) and dr. lynn in macon. so anyone have any positive experiences with doctors who are treating your fibromyalgia? note: i likely have chronic fatigue and sjogrens..plus the heavens only know what else at work on my body, but it's been years since i've been regularly seen by a doctor who's knowledgable in autoimmune conditions. any advice would be greatly appreciated.

xposting in the hopes of getting as much feedback as possible, but i'm reaching the "so miserable i can't take it anymore" stage.
Friday, August 4th, 2006
3:09 pm
Fibro and Pregnancy
Hey everyone.

My name is Nessa, I have had Fibromyalgia for about 6 years, only been diagnosed 3 months ago.

On wednesday (8/2) I found out that I am pregnant with my first child.

I have been taking Amatryptalin (sp?) to help me sleep and to relax my muscles.

I have been told to cease all medicines, so I am wondering if any of you have any homeopathic remedies for help sleeping, and help with muscle pains that are safe for my new baby.

Blessed Be!

Current Mood: content
Sunday, July 30th, 2006
12:54 pm
Chronic Pain Trigger found


FRIDAY, July 28 (HealthDay News) -- U.S. researchers say they've identified a protein in nerve cells that acts as a kind of gatekeeper for chronic pain.

This enzyme, called protein kinase G (PKG), is turned on and activated in response to injury or inflammation. Once activated, PKG triggers other processes that generate pain messages that are sent to the brain. As long as PKG is switched on, pain persists. Turning PKG off relieves pain.

"We're very optimistic that this discovery and our continued research will ultimately lead to a novel approach to pain relief for the millions suffering from chronic pain," researcher Richard Ambron, professor of cell biology at Columbia University Medical Center in New York City, said in a prepared statement.

The study was published online in the journal Neuroscience and was expected to be in the August print issue.

Ambron and his colleague Ying-Ju Sung, an assistant professor of cell biology, have applied for a patent for the pathway that turns on PKG, as well as several molecules that inhibit it. They hope to develop a new class of drugs that target PKG in order to treat chronic pain.

(story link courtesy of brigidsblest)

Current Mood: hopeful
Friday, June 30th, 2006
11:35 am
Tuesday, May 23rd, 2006
11:30 am
At Least You Have Your Health
Every year I try to write something for fibromyalgia awareness day, but this year I was just too fatigued. So here it is, a week and a half late.

X-posted all over the damn place.

Read more...Collapse )

Current Mood: alive
Friday, May 19th, 2006
2:14 am
Never mind the woman behind the curtain--a rant
Beware, this is a bitch post but I have to do it.

Did I ever say "Fibro Sucks!!" ? I hope I did but just in case I haven't recently:


I'm tired of hurting all the time, of waking up stiff and not being able to walk where I want to go. I'm fed up with having my feet burn like fire in the evenings, even after they give me meds to keep it from happening.

I hate the eye involvement where things are out of focus when I'm tired and that I'm tired of my hearing problems and the dizziness I get at times. The aphasia (problems recalling words) and the spelling issues that I have developed (I never used to have these) is agrivating. I really have trouble at times.

I'm tired to having my sleep interupted by pain only to make me have insomnia at night and tired in the day. I'm tired of not being able to do household things that I need to do. And I hate having to have people help me out of chairs or down stairs.

I am tired of having to swallow a cocktail of pills twice a day for everything wrong with my body and worry about which works with what and verify interactions. I'm tired of having to check with my doctors (I have three, one for rhumatology and the Fibro, one for neurology and my complex/partial seizures..epilepsy..and one is my primary care who monitors all the others) so much to just stay healthy.

I hate having so much weight on and not being able to exercise.

Yanno, I didn't order this body and the warranty has run out and I want my money back.

I hate Fibro. I really do. Fibro Sucks.

Current Mood: in pain
Thursday, May 18th, 2006
2:15 pm
Andrew, my officemate, is conducting a survey on how people deal with
the Explanation of Benefits statements mailed to them by insurance
companies. If you've gotten at least one EOB in teh past year, and feel
like taking a short survey, go here: https://catalysttools.washington.edu/tools/survey/?sid=22453&owner=amsimms

And Andrew will appreciate it very much.

Feel free to redistribute -- the survey will remain active though Sunday, May 21st.

(I figured that people with chronic pain are more than usually likely to be annoyed by these things...)
Friday, May 5th, 2006
11:48 pm
Hi, Introduction
Hi, my name is Kat lots of people these days call me Lavendar. I have been initially dianosed with Fibro just a few months ago, still waiting on all the authorizations and stuff for the specialist to get the permenant dx and they are thinking might have RA as well. I'm a reiki master, and practice celtic shamanism/druidism, depends on who you talk to which one I fall under I am also an ordained minister. I've been looking for a support group. I also have hypomania which definitely doesn't help so I'm on tramadol, parafon, trileptal, and with the unexplained edema one a bunch of stuff for swelling. I'm a single mom of one a 3 and a half year old boy. I haven't been working, can't seem to work, every time i try to get a job I run it by my doc to make sure I can actually do the work and she nose dives every one. Highly frustrating, so I've been working on turning my love of writing from a hobby into a job. Started out doing RP's and now am working on a novel which I hope to have done soon. Anyway, I'm always online all kinds of messangers I think I have ids on like 5 different ones and am looking for people to talk to and share with be supportive so just leave a comment if you want to chat and which messanger you have and I'll be happy to provide my sn.
Friday, February 17th, 2006
2:30 pm
Some Good, some bad
I am happy on the Cymbalta, and now my dose is getting upped to 60mg. I am enjoying my sexlife a lot more on this, so I am pleased. And I have lost a few pounds, so that is a plus.
I had an endoscopy last week, and I have something called Barretts Esophogaus, and need to take acid blockers for the rest of my life to try to keep it from developing cancer. However the biopsy came back clean, but I must now repeat it once a year.
I also have Polycystic Ovarian Syndrome, plus I have a good sized segregated cyst on my left ovary causing a good deal of pain, and have developed a fibroid in my uterus. So I am having issues dealing with all of this stuff. I have felt completely run down as of late, and can't seem to get back into a healthier-feeling swing.
I hope everyone else is doing OK, I think I will improve once Spring arrives...
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