Anyone have this? What treatments do you do for it?

Was just diagnosed and am being sent to the specialist. I asked for pain medicine but the doctor said no but I hurt SO bad all over I cry.

11/19/2010 11:20:02 PM

I know nothing, but one of my clients wrote a book on it and its supposed to be world renowned:

http://www.firstchoiceclinics.com/

http://www.lulu.com/product/paperback/youre-not-crazy-an-overcomers-guide-to-fibromyalgia/6399204

Dr. Tim Weir

Good guy, give him a ring and tell him the fish guy sent ya!

11/19/2010 11:37:57 PM

Not trying to sound insensitive, but I'm still on the fence on whether I believe in this. Open to hearing about your experience though.

11/19/2010 11:47:55 PM

Fake disease

It's a catch-all diagnosis for people who whine a lot

[Edited on November 20, 2010 at 12:30 AM. Reason : .]

11/20/2010 12:30:29 AM

Quote :

"female to male incidence ratio of approximately 9:1"

-wikipedia

Quote :

"It's a catch-all diagnosis for people who whine a lot"

-rbthqewrty


sounds about right

11/20/2010 12:41:13 AM

Quote :

"female to male incidence ratio of approximately 9:1"

I think pregnancy is only 8:1.

11/20/2010 12:50:55 AM

wikipedia is outdated as far as FB goes. they have actual tests for it(blood tests) now.

11/20/2010 12:56:37 AM

So does that mean it has been proven to be non-neurological?

11/20/2010 12:58:24 AM

my Mom was misdiagnosed for 15 year (told she had FM), but actually had Lyme.

It started after a car accident, which happened to be a few weeks or so after our yearly trip to the mountains, during which she did have a tick bite, but didn't get it checked out.

So the focus of all the muscle pain and everything, they think, was partly due to the accident, and then the other stuff that came with it was the Lyme setting in.

Antibiotics for Lyme treatment are the only thing that has made her pain any better, but at this point, all the meds and things over the years of being misdiagnosed tore her insides apart, including decimating her gall bladder (which they had to remove), and resulting bile issues in her stomach.

My word of advice ... if there is a doctor house like character, spend whatever you have to to make sure you are not just being diagnosed with this when something else is really messing with your body.

11/20/2010 8:12:45 AM

They've been messing with my body since I was 20 and started clenching me teeth and having daily migraines. I feel like the doctors just throw meds at you in hopes that they might help. They don't and I've had some BAD side effects from some of them.

I haven't slept in 3 days from the pain and the ER worthless. I go my primary care doc today and hopefully she will have my blood test results back. Until they figure something out I need pain medication. I can't even shower because I can't barely move and I haven't left the house besides anything medical related in a month.

11/20/2010 8:18:58 AM

i agree with ^^. definitely get tested for lyme & RMSF. not that this is the same as your problem, but i had really bad joint problems that sounded & felt just like arthritis. i also was super hot natured & had night sweats every night, regardless of the room temp. clenching my teeth, off & on GI problems. i tested negative for every type of arthritis out there. we went through several different crazy possibilities; sjogren's, FM, lupus, i can't remember what else.

i developed a typical bull's eye lyme rash after getting 86 chigger bites. i never noticed the tick bc there were so many damn bites. it got really ugly, i went to the doc for a blood test. came back positive for lyme (acute infection) & turns out i had a latent RMSF infection. i never knew i had it, never developed a rash, but i do remember feeling pretty sick w/ similar symptoms a few years ago. i took antibiotics for 6 weeks, and still occasionally get some knee pain/hot flashes, but it's 2384023841023656x better.

ymmv, but it's worth getting tested.

11/20/2010 9:33:47 AM

For lyme testing do not waste your time with the one the docs will do that your insurance will pay for. about 40% of people with late lyme get a false negative. Use Igenex and get the IgG and IgM western blots. Get both because some people don't convert from IgM to IgG.

http://igenex.com/Website/

If Igenex's full tick panel for other diseases is too expensive, have Quest do the other tick diseases.

If that doesn't show anything, go to this guy:

http://www.enlander.com/main.html

11/20/2010 11:03:50 AM

^hyper IgM is pretty tell-tale if im not mistaken......

but yeah, i see what your saying

11/20/2010 11:09:12 AM

People that otherwise produce IgG just fine sometimes don't seroconvert with Lyme disease for some reason. This happened to me and the docs at Igenex said they'd seen it before in otherwise normal people.

11/20/2010 11:16:28 AM

Quote :

"Fake disease It's a catch-all diagnosis for people who whine a lot"

there's neuroimage evidence fm is not a fake design

11/20/2010 2:59:27 PM

Debatable, not really.

The blood test thing is false, there is no blood test.

11/20/2010 3:48:41 PM

Lots of real doctors itt

11/20/2010 4:14:05 PM

Quote :

"Not trying to sound insensitive, but I'm still on the fence on whether I believe in this"

i'm the same way.

11/20/2010 6:01:44 PM

Made up disease for whiny bitches ITT.

11/21/2010 1:21:39 PM

I really doubt all these people are making up their symptoms. I do think fibromyalgia might be a catch-all diagnosis for other problems.

11/21/2010 1:46:42 PM

i would go see another doctor

11/21/2010 4:35:37 PM

^^ i kinda feel that way too. like if they can't figure out what is actually wrong with you, this is the diagnosis.

which definitely warrants a second opinion and/or specialist.

11/21/2010 5:05:08 PM

Quote :

"like if they can't figure out what is actually wrong with you, this is the diagnosis."

just like ADD

11/21/2010 5:25:54 PM

The two most mentally unstable women on the wolfweb were diagnosed with fibromyalgia. Cause or effect?

11/21/2010 5:39:15 PM

sorta like all the 300lb plus people with thyroid issues

11/21/2010 5:45:52 PM

^^it's ADHD

----
i really don't think coming in here and posting about how you think whatever she's got isn't a real disease (regardless of whether it is) is very helpful. it's pretty asshole-ish imo.

[Edited on November 21, 2010 at 6:32 PM. Reason : ]

11/21/2010 6:28:52 PM

well that isn't what i was doing!! i was agreeing with this...posted in response to the people saying symptoms were made up

Quote :

"I really doubt all these people are making up their symptoms. "

i just think if i were diagnosed with this i'd probably get a second opinion. because like you said it could be lyme or rmsf or lupus or whatever...i'd want to rule other things out that might cause the same symptoms and go undiagnosed for years with years of suffering and having the wrong diagnoses.

i dunno. i've experienced some misdiagnoses in my day. like people saying that every symptom i've ever had was a psychosomatic part of anxiety or depression. until finally i found someone that really listened to me and did actual tests to find out something was actually wrong

which i guess you can do with fibromyalgia, but it would def stink if she did have lyme or something and it was going undiagnosed.

11/21/2010 7:06:26 PM

ADHD is essentially, in practice, just a catch-all diagnosis too for kids who can't study, sit still, or behave

11/21/2010 8:05:03 PM

^^i was really referring more to rbrthwrd & nighthawk, but i still wouldn't roll up in someone's serious thread about how much pain they're in and tell them you think what they have might not exist.

Quote :

"Lots of real doctors itt"

indeed


^perfectly well-behaved adults have it too

[Edited on November 21, 2010 at 10:53 PM. Reason : ]

11/21/2010 10:52:19 PM

they want me to go straight to a rheumotologist but i want to check out the lyme tests now that i'm reading this.

11/21/2010 11:01:49 PM

My mother has this and CFS (also argued to be a fake disease). Dunno how she copes but she's a work horse these days. idk i've never heard my mother complain about anything but she definitely stopped working for a few years when she was diagnosed. Pretty much couldn't get out of bed for a few years which in retrospect must have sucked ass because i was still in diapers and my two siblings were just becoming teenagers.


If my mom dealt with it then i'm sure you can get by

I'm AstralAdvent and i approved this message

11/21/2010 11:08:32 PM

Definitely call up Igenex, they will mail you a test kit with all the tubes you need and a fedex return label. Just have to get your doc to sign the paperwork and get blood drawn. I was surprised how easy it was.

11/21/2010 11:16:18 PM

Quote :

"^perfectly well-behaved adults have it too"

true. and a lot of adults that have it don't get diagnosed until later in life. like in graduate school programs and stuff because they've learned coping mechanisms all their lives...then they just reach a point where they hit a wall.

11/21/2010 11:28:46 PM

^that's how i feel

11/21/2010 11:34:03 PM

http://tinyurl.com/this-is-what-you-actually-have

11/22/2010 1:08:46 AM

Dude, why are you just making this thread now?

We told you you had fibromyalgia like well over a year ago:

Quote :

"Wolfmarsh: Pretty soon, when the doctor says she should be better from the concussion, she will develop Fibromyalgia. It's the natural progression of BAT SHIT CRAZY 7/22/2009 1:43:08 PM"

message_topic.aspx?topic=571015&page=13#13102669

BOOM!

[Edited on November 22, 2010 at 1:33 AM. Reason : ]

11/22/2010 1:31:43 AM

In all seriousness, I think fibromyalgia is real, and I wouldn't wish it on my worst enemy.

That said, the diagnosis seems to attract a certain personality type. And it's sad. You know, people who constantly need something to fixate on or something to leverage for attention or sympathy. Sometimes, it's something real...maybe something from their past or a whole host of things from their past, and instead of dealing with those things, they cling to them like perverse totems. Other times, they have to exaggerate or fabricate something entirely for attention. The ironic part is that they've been right all along...there is something very, very wrong with them...it's just not what they're looking for.

I feel like I've been in that boat in a somewhat minor way and when it hits you, when you finally see what's really screwed up about you, it's just like, "Awww, geez..."

RachelMarie, I sincerely hope that the doctors have made some kind of mistake and that you do not have fibromyalgia--or lyme disease or lupus or whatever. Based on your previous posts, it seems that you've had a lifetime of rough shit come your way, and a diagnosis like this would be just so unfair!!!

11/22/2010 2:03:18 AM

alright rbrthwrd, that's enough. this is the lounge.

11/22/2010 8:27:39 AM

My mom has fibromyalgia. She was an independent, highly driven woman. Suddenly, 5 years ago, she started having a lot of random fatigue and muscle pains. Two years passed and it got to the point that she had a hard time even getting out of bed. She was completely different. She had to quit her job because she kept having to miss so many days.

She just now is getting back to the point where she feels like she can go back to work. She's been interviewing pretty aggressively lately.

I don't appreciate it when people who know nothing about the disease dismiss it for being fake.

For the record, my mom was sent to about 8 doctors and three rheumatologists and was tested several times for Lyme's disease. You people are entitled to your opinions, but until you see what this shit does to a person, you need to keep your fucking mouths shut. People in my family were like you guys, thought she was faking it for attention, but they never saw how much it devastated her that she was relegated to home because she seriously had a hard time even getting out of the bed. Plus her meds exacerbated her fatigue.

[Edited on November 22, 2010 at 8:56 AM. Reason : Even if you were just trolling, you need to do that shit is TSB or CC.]

[Edited on November 22, 2010 at 9:01 AM. Reason : haters gon' hate.]

11/22/2010 8:56:32 AM

you're like a brotha from the same motha

I'm AstralAdvent and i approved this message

11/22/2010 12:34:33 PM

my mother has also been diagnosed with this. i am on the fence about the diagnoses but for the past 3 years she has been tested for everything, including Lyme at several different specialists...

i dont know what she has but i can attest that she is in a lot of pain all the time. and she handles it without narcos. kudos to her for hanging tough.

for those of you trolling...i would like to see you go through the amount of pain i have seen moms in.

11/22/2010 2:17:22 PM

^ this

My mom stayed off the pain killers for a while, but eventually she had to start taking them. She's all but off most of the stuff now and only uses meds for times when it is most severe. It's been a while since she's had to, I believe.

As I stated before she was a very driven person. She was two credits from her MBA and was on the verge of a promotion to a GS-15 position when she literally couldn't work. It devastated her (and us to see that happen).

Things are looking better now, though.

11/22/2010 2:36:23 PM

My brother has fibromyalgia. Took him from a workhorse, happy as hell, super-energetic dude to bed-ridden on morphine or some other opiate 24/7/365. He's already given me the "This shit is killing me to the point of just swallowing a handful of this shit they're giving me" speech. It sucks, but there's a part of me that wouldn't blame him. Can't drive, walks with a walker now, sleeps 20 hours at a stretch... he's 52. Prognosis is that it's just going to go downhill.

Internal pain appliance implanted. Check x 3
Lyme tests. Check x 3252
Cat scans, MRI. Check, check, x $1500/pop
Etc, etc.

11/22/2010 2:47:03 PM

double daps awarded to both BridgetSPK and Wolfmarsh

11/22/2010 3:40:03 PM

Quote :

"My mom has fibromyalgia. She was an independent, highly driven woman. Suddenly, 5 years ago, she started having a lot of random fatigue and muscle pains. Two years passed and it got to the point that she had a hard time even getting out of bed. She was completely different. She had to quit her job because she kept having to miss so many days. "

this sounds just like me. i went from being a highly productive person to not being able to get out of bed. i feel like i'm basically wasting my life away. they won't even give me narcotics for pain. i'm hoping it's something simple but i have def gone from hard working, caring about my looks and enjoying life to wallowing in my room all day. i'm pretty much worthless.

11/22/2010 3:40:38 PM

It could always be worse, when my mother was finally diagnosed she caught pneumonia like 2 weeks later. I think she used to be in some kind of support group or something maybe but i can't remember because i was so little. I'll ask her when i see her in the next few days

I'm AstralAdvent and i approved this message

11/22/2010 3:47:26 PM

Quote :

"That said, the diagnosis seems to attract a certain personality type. And it's sad. You know, people who constantly need something to fixate on or something to leverage for attention or sympathy."

That sums up how I feel about it. My sister-in-law fits this description exactly. It's always been something with her - usually self-diagnosed but sometimes she's been able to badger spineless doctors into backing her up. Asthma, celiac disease, imaginary allergies, and now fibromyalgia. She refuses to make any attempt to address the root cause and it's draining both financially and emotionally for her family.

11/22/2010 4:12:39 PM

maybe i should've remembered to ask about that support group

I'm AstralAdvent and I approved this message.

5/25/2011 1:32:03 PM

Quote :

"ADHD is essentially, in practice, just a catch-all diagnosis too for kids who can't study, sit still, or behave"

there's a pretty clear psychological quantitative type test that can detect (I got tested and didn't have it), and brain imaging stuff that shows it (I believe it's decreased activity in the frontal cortex) so I assume you're talking more about overdiagnosis

[Edited on May 25, 2011 at 5:31 PM. Reason : k]

5/25/2011 5:30:45 PM

I think one of the things that people have a problem with is that we're getting to a place where we can identify the neurological background of all sorts of things that used to be considered quirks or qualities. Now they're disorders. I think this is great, and it's wonderful that the people who need help can find it in medicine.

But, like I said, there is a neurological basis for all sorts of stuff we do. Personally, I'm torn both ways. I value diversity, and I don't like people getting labelled with disorders or dysfunctions when they could just be "different." On the other hand, I'd like our appreciation for the brain applied more liberally. The brains of addicts, for example, are profoundly abnormal...but we lock them up like criminals cause they're "bad" just like we used to flunk the kids who didn't learn traditionally cause they were "stupid."

5/25/2011 6:40:01 PM