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FMluvswater
05-12-2005, 01:39 PM
About Fibromyalgia Awareness Day
Fibromyalgia Awareness Day, held on May 12 of each year, is a widely celebrated, high- profile media event observed by the millions of Americans with fibromyalgia and other chronic pain illnesses. Since its inception in 1997, the National Fibromyalgia Association has led Awareness Day activities nationwide in an effort to increase awareness of fibromyalgia and other chronic pain illnesses.
What is Fibromyalgia?
Fibromyalgia (FM) is an increasingly recognized chronic pain illness which is characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle and hands, but any body part can be involved. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time.
Who is affected?
It is estimated that approximately 3-6% of the U.S. population has FM. Although a higher percentage of women are affected, it does strike men, women and children of all ages and races. Because of its debilitating nature, Fibromyalgia has a serious impact on patients' family, friends, and employers, as well as society at large.
What are the symptoms?
FM is characterized by the presence of multiple tender points and a constellation of symptoms.
Pain The pain of FM is profound, widespread and chronic. It knows no boundaries, migrating to all parts of the body and varying in intensity. FM pain has been described as deep muscular aching, throbbing, twitching, stabbing and shooting pain that defines the very existence of the Fibromyalgia patient. Neurological complaints such as numbness, tingling and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning. Aggravating factors which affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.
Fatigue In today's world many people complain of fatigue; however, the fatigue of FM is much more than being tired. It is an all-encompassing exhaustion that interferes with even the simplest daily activities. It feels like every drop of energy has been drained from the body, which at times can leave the patient with a limited ability to function both mentally and physically.
Sleep Problems Many Fibromyalgia patients have an associated sleep disorder which prevents them from getting deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in the stage 4 deep sleep of FM patients. During sleep, individuals with FM are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep.
Other symptoms Additional symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, raynaud's syndrome, neurological symptoms and impaired coordination.
*****
I experience fibromyalgia and have since 1989. It's purely coincidence that the short term of fibromyalgia is FM ... my screen ID is actually short for Fidomom. :smile:
I feel a little odd posting about this ... it's something I usually try to hide it's embarrassing to admit to. :redface: I didn't ask to feel like this though and it's my hope that posting this might help someone else reach a better understanding of what their friend or relative is going through in experiencing fibromyalgia. :chi:

FMluvswater
05-12-2005, 03:29 PM
Awareness bracelet developed by the National Fibromyalgia Research Association to promote FM and raise public consciousness. (http://www.nfra.net/AwareBracelet.htm#bracelet)
http://www.nfra.net/images/awareness_bracelet_sm.jpg

moneypit
05-12-2005, 08:39 PM
Also one of the overly used diagnosis. 3-6% of the population? You wont believe how many of my patients think they have it..
.

Debbolas
05-12-2005, 08:41 PM
Hey FM,
How's it going?
I'm sorry you have this aweful disease, it sounds terrible....be strong, and remember out thoughts and prayers are with you.....love ya! Deb ;)

Mrs CP 19
05-12-2005, 08:52 PM
I have a friend who was diagnosed with FM 7 years ago. Unfortunately, she has done nothing but use pain meds. And will do anything to get them. Vicadon to Methadone to patches to Norco, etc....I have told her about everything I could find on this...Start with short walks, work up to other excercise, etc.
Have you tried anything besides the pain meds routine? Did anything help you? I hope and pray you are able to deal with this devastating illness better than some. My friend has had at least 10 Dr.s in the last 5 years...Doctor shopping for more pain drugs...Very dis-heartening. Plus she takes stimulants when she can get some, sleeping pills, tranqs, etc. Just seems like too many drugs, too many extremes.

moneypit
05-12-2005, 09:28 PM
The best way to treat this condition is to never ever start in pain meds. I have never ever had a patient that said that they "used" to have Fibro. To start a patient on pain meds is wrong. Its neverending and it only compounds the condition.
My experience with the illness is to start with exercise and also rule out any possibility of underlying depression. I dont care if its one step at a time. Exercise is a must with this condition. It also requires good support. Like I said earlier, its one of the most overly dx'd conditions, but when it is real it's terrible.

FMluvswater
05-13-2005, 12:28 AM
I don't know other people with fibromyalgia and can't comment on how anyone else deals with it. For myself I hate popping pills and avoid it as much as possible. I have found ways to manage my pain and my energy without any help from a doctor. Beyond the diagnosis by a skeptical rheumatologist I was basically dismissed. It was suggested that perhaps if I lost weight the FM would go away nevermind it had been present before I gained weight but okay. So I've lost a lot of weight. I wanted the supposition to be right. I wanted my pain to be all weight related well it wasn't. It hasn't made any discernible difference to the pain I feel. It is a little easier and faster to walk not carrying around so much excess weight and I do feel otherwise healthier than I have in a long while so the weight loss was good. The fibromyalgia though is not my idea of fun. Some days are really bad and there's no managing the pain - it has control where I can't find comfort, not at rest, not in movement and not from the only analgesics I bother with (acetaminophen and ibuprofen combo) I just have to wait it out on those days and hope the flare up doesn't last too long.
Laughter is my daily pain killer of choice and I'm really not kidding.
I like to think by now I know my own limits of what I can and can't tolerate in terms of excercise. I do what I can when I can and I try not to overdo it because the downtime from overdoing it is unreasonable to what constitutes "overdoing it" for me. I'm getting to know some of what will trigger a flare up for me and I take it easy on those things. Sometimes they happen out of the blue though anyway - that pisses me off when that happens.
For those that do not know feeling pain day in and day out is very draining; it saps energy like you wouldn't believe.
I've a pain scale to help me gauge how I'm feeling and what I'm up to doing.
10- gallbladder attack (worst pain I've ever felt)
9 - frostbite/skin debridement
8 - childbirth
and so on
Usual day for me is a 6 on that scale; if it spikes above that it's a flare up, if it dips below that then I consider it a good day. :smile: Lowest it's ever gone was a 3 and I couldn't figure out what made me have such a great day. I wish I could duplicate whatever I did different that day cuz I'd like another one like that or better.
I appreciate the supportive comments and insights Deb, Mrs. CP 19, and moneypit. :smile:
I try not to dwell too much on the pain cuz it just makes it too important and it isn't, it won't kill me, it just feels yucky. I try to keep my mind busy with other things and when I've the energy to do so, I keep the rest of me busy also. :smile:
To all whose lives are affected by fibromylagia either directly or indirectly I feel for you and I hope something in the future will help us all improve our quality of life or dare I hope maybe even cure whatever is making us hurt. :clover: :chi:

infotraker
05-13-2005, 07:06 AM
My wife (Ora) suffers from FM , chemical sensitivity and Latex allery. She uses conventional medicine practices plus homopathic which seems to be helping. She runs a support group on Yahoo for sufferers of these problems which seem to go hand in hand with each other. I'll pm her email address to you, she spends lots of time supporting and swapping ideas to help with these illnesses.

Mrs CP 19
05-13-2005, 08:30 AM
Wow FM, sounds like you are dealing with it in a positive way. I am familiar with the flare up thing and the fatigue you must feel. I hope they will find something soon that will help. The ilness is becoming more recognized now and that helps. As Moneypit says, I imagine lots of hypochondriacs decide they have this condition, and that doesn't help. I had been pushing the excercise thing with my friend, and just wondered if that was a good thing.
Again, all the best to you, I think unless you know someone who truly suffers from this devastating illness, it is hard to understand. All the best to you, you are in my thoughts and prayers. You are awesome for doing everything you can to get thru this! Jill

moneypit
05-13-2005, 09:05 AM
FM- It sounds as though you are handling your condition as well as you can.. There are two ways to deal with things. One is to just give up and be unhappy. Two is to choose to be as productive as possible and be happy. I think that being happy is the best therapy beyond staying physicaly happy. One thing nice is that we can CHOOSE to be happy or we can choose to be sad.
If you were to just give up and stop the diet and just stay inside the illness wins. You keep up the good work. Hopefully one day it will just go away....
Goodluck

FMluvswater
05-13-2005, 11:56 AM
My wife (Ora) suffers from FM , chemical sensitivity and Latex allery. She uses conventional medicine practices plus homopathic which seems to be helping. She runs a support group on Yahoo for sufferers of these problems which seem to go hand in hand with each other. I'll pm her email address to you, she spends lots of time supporting and swapping ideas to help with these illnesses.
Thank-you very much. Got the PM. :smile:

Tom Brown
05-13-2005, 12:01 PM
Thanks for the information, FM. One of my best friends has it so it's good to know what they're up against.

FMluvswater
05-13-2005, 12:01 PM
Wow FM, sounds like you are dealing with it in a positive way. I am familiar with the flare up thing and the fatigue you must feel. I hope they will find something soon that will help. The ilness is becoming more recognized now and that helps. As Moneypit says, I imagine lots of hypochondriacs decide they have this condition, and that doesn't help. I had been pushing the excercise thing with my friend, and just wondered if that was a good thing.
Again, all the best to you, I think unless you know someone who truly suffers from this devastating illness, it is hard to understand. All the best to you, you are in my thoughts and prayers. You are awesome for doing everything you can to get thru this! Jill
Encouraging a friend to try is always a good thing. I'm sure your friend appreciates your support - as do I. :smile:

FMluvswater
05-13-2005, 12:08 PM
FM- It sounds as though you are handling your condition as well as you can.. There are two ways to deal with things. One is to just give up and be unhappy. Two is to choose to be as productive as possible and be happy. I think that being happy is the best therapy beyond staying physicaly happy. One thing nice is that we can CHOOSE to be happy or we can choose to be sad.
If you were to just give up and stop the diet and just stay inside the illness wins. You keep up the good work. Hopefully one day it will just go away....
Goodluck
Certainly I have pity party days but mostly I try not to go there. Thank-you for your supportive comments and your expert insight. :smile:
I don't know that this ever can just go away but a streak of good days wouldn't be unwelcome. :wink: My son often talks about curing fibromyalgia. His thoughtfulness makes me smile and yet I feel sad he even knows that word and that it affects him at all. :squiggle:

FMluvswater
05-13-2005, 12:17 PM
Thanks for the information, FM. One of my best friends has it so it's good to know what they're up against.
Well then my intention in posting about fibromyalgia awareness day has found at least one mark. :smile:

FMluvswater
05-12-2006, 05:16 PM
I just noticed the date. :idea:
Anyone else living with this however they are dealing with it, I wish them all the best. :chi:

Debbolas
05-12-2006, 06:14 PM
Love ya FM
:D

FMluvswater
05-12-2006, 06:32 PM
Love ya FM
:D
Thank-you, Deb :smile: Love you too. :D

Roaddogg 4040
05-12-2006, 07:11 PM
I sure know what you are going through. I haven't found much help either. Best of luck to you...
Steve

FMluvswater
05-12-2006, 07:14 PM
I sure know what you are going through. I haven't found much help either. Best of luck to you...
Steve
Thank-you, Steve. :smile: Maybe if awareness spreads new ideas will come to light; more ideas that could really help us. :smile:

Kim Hanson
05-12-2006, 08:05 PM
My heart is with you Babe, didn't know you had this and now I really feel bad for you. I thought when I got cluster headaches and wanted to kill myself from the damn pain that was bad. I will be thinking about you good friend :) ........( . )( . )..........

FMluvswater
05-12-2006, 08:11 PM
My heart is with you Babe, didn't know you had this and now I really feel bad for you. I thought when I got cluster headaches and wanted to kill myself from the damn pain that was bad. I will be thinking about you good friend :) ........( . )( . )..........
I mostly only talk about it on this day. :wink: A few friends have known for a while only because it came up in conversation or was relevant to interaction with them. Don't intentionally hide it per se just don't bring it up very often. :smile: I appreciate your care, your compassion and your friendship, Sugar.

Kim Hanson
05-12-2006, 08:22 PM
I mostly only talk about it on this day. :wink: A few friends have known for a while only because it came up in conversation or was relevant to interaction with them. Don't intentionally hide it per se just don't bring it up very often. :smile: I appreciate your care, your compassion and your friendship, Sugar.
For once I don't know what to say :cry: I will meet you some day :cool: Making a friend takes a moment, being a friend takes a lifetime :) ......( . )( . ).........I hope you have a great Mothers Days FM :cool: I know that last is premature, but I get to work this weekend :cry:

FMluvswater
05-12-2006, 08:34 PM
For once I don't know what to say :cry: I will meet you some day :cool: Making a friend takes a moment, being a friend takes a lifetime :) ......( . )( . ).........I hope you have a great Mothers Days FM :cool: I know that last is premature, but I get to work this weekend :cry:
I hope we get to meet someday also. Thanks for the Mother's Day wish - gonna spend some time with him on the official day. :smile: Sorry you gotsta work. The girls got plans with Marcy? You do something special also?

Kim Hanson
05-12-2006, 08:41 PM
I hope we get to meet someday also. Thanks for the Mother's Day wish - gonna spend some time with him on the official day. :smile: Sorry you gotsta work. The girls got plans with Marcy? You do something special also?
The girls must have something planned , Aleasha is home tonight from Edmonton. She never called even to say she was coming home for the weekend, so somethings up :cool:
You do something special also
I don't because she isn't my momma now babe :p It's our anniversary on the 18th and I save it for that day.......( . )( . )........

FMluvswater
05-12-2006, 08:47 PM
The girls must have something planned , Aleasha is home tonight from Edmonton. She never called even to say she was coming home for the weekend, so somethings up :cool:
I don't because she isn't my momma now babe :p It's our anniversary on the 18th and I save it for that day.......( . )( . )........
Ahhh likely a surprise - cool. :smile:
Marcy's lucky and you're lucky she puts up with you, lol. :wink: :p Early Happy Anniversary to you two. :smile:

Kim Hanson
05-12-2006, 08:54 PM
Ahhh likely a surprise - cool. :smile:
Marcy's lucky and you're lucky she puts up with you, lol. :wink: :p Early Happy Anniversary to you two. :smile:
Babe, Im an Angel in disguise :p Sometimes the other side beats me out and I rain hell on forums :p Thanks though..........( . )( . ).......my prayers are still with you Babe :)

FMluvswater
05-12-2006, 08:58 PM
Babe, Im an Angel in disguise :p Sometimes the other side beats me out and I rain hell on forums :p Thanks though..........( . )( . ).......my prayers are still with you Babe :)
Haha even on the forums your disguise slips sometimes, my friend - like now :wink: :D

Kim Hanson
05-12-2006, 09:11 PM
Haha even on the forums your disguise slips sometimes, my friend - like now :wink: :D
My friends know me and that all that counts, fock the rest of them :p I still find it funny that alot want to know what I have to say on here :p or is that the other side telling me that :devil: :D :D ...........( . )( . )...........

FMluvswater
05-12-2006, 09:21 PM
My friends know me and that all that counts, fock the rest of them :p I still find it funny that alot want to know what I have to say on here :p or is that the other side telling me that :devil: :D :D ...........( . )( . )...........
I think it's true also - you have a unique way of putting things, Sugar ... I think you probably think faster than your fingers can type sometimes, lol ... I can still usually get the gist of your posts even without a Hansolator, lol :wink: :D I read lots of your posts :cool:

Kim Hanson
05-12-2006, 09:30 PM
I think it's true also - you have a unique way of putting things, Sugar ... I think you probably think faster than your fingers can type sometimes, lol ... I can still usually get the gist of your posts even without a Hansolator, lol :wink: :D I read lots of your posts :cool:
I thought of getting one of those contraptions that you speak into and it types and I don't think I have enough fire insurance for the melt downs :p so just bare with me now :p I be getin beter at this chit caled tipg, or is it caled pokin :p I don't search and poke anymore :p ..............( . )( . )...........

FMluvswater
05-12-2006, 10:04 PM
I thought of getting one of those contraptions that you speak into and it types and I don't think I have enough fire insurance for the melt downs :p so just bare with me now :p I be getin beter at this chit caled tipg, or is it caled pokin :p I don't search and poke anymore :p ..............( . )( . )...........
A friend had one of those contraptions - very finicky and misspells a lot, lol. :D Yeah you be gittin better alright! :D I'm jealous cuz I still have to look at the keys to type. :redface: and even so I still have sooo many typos. I proofread and edit before I hit submit and I still don't catch everything. :squiggle: No such luck for me on MSN instant messenger ... oh it gets real bad. :crossx:

Rexone
05-12-2006, 11:19 PM
Look at Hanson getting all warm n fuzzy n shit. Better not point this thread out to the BR's Sugar.... :wink:
:)

lakewake
05-13-2006, 12:29 PM
My son was originally diagnosed with Fibromyalgia at the age of 8. He had many of the symptoms but after several more specialists he had unique purple blotches start to appear at his joints. He was in so much pain that you could not even touch him. He was eventually diagnosed with HSP. Henoch Shonlein Purpura. The condition comes and goes after spring respiratory infections from asthma. It is under control right now with serious changes in his diet. Certain foods had been triggering allergies that triggered the infections and brought on the HSP. We had done a lot of research on FM during this time. It is so debilitating to the people that had it we wondered if he was going to have a normal life. This all came on the heals of my daughter being treated for Turners Syndrome. Had in not been for the incredible people at Eli Lilly Pharmaceuticals... that would have been a very tough one to get through. I know that Pharmaceutical companies often get a bad rap for greed or rushing products to market but these people made it possible for my daughter to lead a normal life.
I hope you have a Happy MothersÂ’ Day!

HammerDown
05-13-2006, 12:41 PM
... Additional symptoms may include: irritable bowel and bladder, :Looks like I've got it :notam:

FMluvswater
05-13-2006, 12:50 PM
My son was originally diagnosed with Fibromyalgia at the age of 8. He had many of the symptoms but after several more specialists he had unique purple blotches start to appear at his joints. He was in so much pain that you could not even touch him. He was eventually diagnosed with HSP. Henoch Shonlein Purpura. The condition comes and goes after spring respiratory infections from asthma. It is under control right now with serious changes in his diet. Certain foods had been triggering allergies that triggered the infections and brought on the HSP. We had done a lot of research on FM during this time. It is so debilitating to the people that had it we wondered if he was going to have a normal life. This all came on the heals of my daughter being treated for Turners Syndrome. Had in not been for the incredible people at Eli Lilly Pharmaceuticals... that would have been a very tough one to get through. I know that Pharmaceutical companies often get a bad rap for greed or rushing products to market but these people made it possible for my daughter to lead a normal life.
I hope you have a Happy MothersÂ’ Day!
I'm glad your kids are okay and managing with their conditions too. :smile: Thank-you for offering your understanding and for the Mother's Day wish. :smile:

FMluvswater
05-13-2006, 12:58 PM
Looks like I've got it :notam:
Well if you didn't you might not have discovered the great value of wetnaps :idea: ... so try to be glad about that. :D :wink: Seriously, anyone with IBS has my empathy. It can really limit making plans and being punctual.
Your http://img.photobucket.com/albums/v56/FMluvswaterbabe/HDforever.gif forever :D,
~FM :smile:

Kim Hanson
05-13-2006, 03:30 PM
Look at Hanson getting all warm n fuzzy n shit. Better not point this thread out to the BR's Sugar.... :wink:
:)
Why not Mike it might be the thing to get them off the topic of twigs and giggle berrys :p .......( . )( . ).............

Nord
05-13-2006, 04:20 PM
I hate to say this, but a lot of people refer to this as TBD.........Tired But Disease- reason..................
I believe it was already brought up in the first couple of posts on this thread...
A lot of people are diagnosed with FM that don't have it.......
I don't have an opinion on it because I'm not educated enough on this specific condition................
Does anyone know if this is just a name for a condition, or is there specific blood test that actually proves a person has FM?
~NORD~

lakewake
05-13-2006, 04:57 PM
I hate to say this, but a lot of people refer to this as TBD.........Tired But Disease- reason..................
I believe it was already brought up in the first couple of posts on this thread...
A lot of people are diagnosed with FM that don't have it.......
I don't have an opinion on it because I'm not educated enough on this specific condition................
Does anyone know if this is just a name for a condition, or is there specific blood test that actually proves a person has FM?
~NORD~
So far no difinitive tests. As some have posted it is a catch all for many undiagnosed or unrecognizable syndromes. The Mayo Clinic is doing more research to try and define it better. Attached is a chart that shows the sensitive points that help identify or screen FM.
http://www.mayoclinic.com/images/image_popup/ww5ro88.jpg
From the MayoClinic.com:
Diagnosing fibromyalgia is difficult because there isn't a single, specific diagnostic laboratory test. In fact, before receiving a diagnosis of fibromyalgia, you may go through several medical tests, such as blood tests and X-rays, only to have the results come back normal. Although these tests may rule out other conditions, such as rheumatoid arthritis, lupus and multiple sclerosis, they can't confirm fibromyalgia.
Still a lot of debate about it. More and more of these studies are being done to eliminate environmental factors as the cause. Food preservatives,water and air polution, household cleaners and chemicals etc. Hope this helps.

FMluvswater
05-13-2006, 05:04 PM
I hate to say this, but a lot of people refer to this as TBD.........Tired But Disease- reason..................
I believe it was already brought up in the first couple of posts on this thread...
A lot of people are diagnosed with FM that don't have it.......
I don't have an opinion on it because I'm not educated enough on this specific condition................
Does anyone know if this is just a name for a condition, or is there specific blood test that actually proves a person has FM?
~NORD~
Currently there is no diagnostic blood test to confirm fibromyalgia. I'm hopeful there may be someday. I was reading last night about an anti-body study I can't find the one I was reading but I found another mention of it here (http://www.autoimmune.com/NewsRel10Feb99.html).
"Using a patented blood test called the Anti-Polymer Antibody Assay, or APA Assay, researchers found anti-polymer antibodies in approximately one-half of all patients who were diagnosed with fibromyalgia and in more than 60% of the fibromyalgia patients with severe fibromyalgia symptoms. Patients with diseases frequently confused with fibromyalgia, including rheumatoid arthritis, systemic lupus erythematosus, and systemic sclerosis/scleroderma, had a much lower incidence of these antibodies than did the fibromyalgia patients."
The one I was reading said even that test was not definitive that if someone who met all other criteria for FM diagnosis did not test positive it didn't mean they didn't have FM but that there might be other reasons for a negative result.
I don't need a blood test to prove to me that I have FM - I live with this every single day; it couldn't be more real. However, if they come up with a blood test to diagnose it, that would sure be less stressful to admit to being fibromyalgic as easily as someone with say diabetes is able to admit to being diabetic without being frowned at and met with skepticism.

Nord
05-13-2006, 05:51 PM
Thats interesting, so these people might have something else wrong with them, or.......
A lot of people claim this condition hence the mock of "Tired Butt Disease"
sad