fibromyalgia

Dreadful Nonsense
#1
I notice a lot of folks here have it. My beloved has it and it has really effected her life on sooo many levels....It took 10 years to get it diagnosed....sleeping pills are her only treatment....
 
karrie
#2
I got lucky and was able to get a realitively quick diagnosis. After only 6 months, I was sent to a really good rheumatologist. It was the first time I'd ever heard of fibro.

I've been through a plethora of meds, all of which caused a variety of problems on top of the fibro, rather than helping it. Right now, my only possibilities for relief are mercyndol (which I avoid using because I really like it, lol), and alcohol, which helps cut the pain and relax muscles for a good nights sleep better than any of the pills the doc handed me. Any of the other pain pills cause reflux and ulcers, which means meds on top of meds... not something I'm willing to live with.

I'm one of the lucky ones and can still work out gently much of the time to help relieve achy muscles and tense joints.
 
MikeyDB
#3
Karrie

A debilitating and horrible condition, my heart goes out to you.
 
Nuggler
#4
You are in fact one of the fortunate few Karrie. Glad to hear that.

We have friends who have been diagnosed and they live on meds.

Hope it stays the way it is now or gets better.

Good luck

N'Ugg
 
Dreadful Nonsense
#5
she would get the wierd painand like whenever she complained i would ask her is it the wierd pain...anyway..we were sent to a neurologist and he prescribed antidepressants...that was the last straw...play with her seratonin levels and see what happens sort of thing...so like in my GP's office i'm freaking he says nothing but well maybe not use them then....His wife gave me herneuroligist, which turns out to be one of the tops in Toronto.....he did a series of tests but after just watching her walk back and forth ...said I think i know whats wrong, i can't diagnose it, let me rule out a few things with an mri and a cat scan and we will go from there.......after those tests he sends usa to this fab rheumatoid arthritis doc...who right off the bat diagnosed sore feet in morning by looking at her lines in her shoes....then onto all her fibro points really hurt when she touched them.......anyway....she takes 2 mg. of lorazapam at night with a tylenol 3.....thats it...she doesn't drink so booze is not an option....

anyway here is the wierdest of the wierd story, reminds me of Q in star trek when he became human.........

Ok she sleeps very lightly. the doc told me all her problems are from sleep disorder and not proper sleep....i said she snores and stuff and like she sleeps....she begged to differ....anywho.....this one day the alram went off to get up....normaly she is like right onto the thing....this time nada...i reached over turned it off and got up to do my coffee deal....
came back and had to shake her to wake her....a first......later that day she told me something wierd happened.....her words:

"You know when yer sleeping and like you know whats happening right, like if you get up to go pee, and like if you start dreaming you know you are dreaming and you still hear everything around you"

Me: "well yeah maybe at the beginning but go on"
Her: "well last night i like lost touch with everything, it's real scary for i lost conciousness and did not even know i did"


Anyway after explaining that i do that every night she did not believe me.....i told her we would discuss it with the doc and when we did , the doctor told me that she does not sleep deeply.....she went on about how important it is and only certain hormones are released when you sleep deeply after many hours of deep sleep and she is not bennefitting by this ......
so i stated"So like she has only really sleeped once in her whole life"


anyway whats the stuff you don't like taking that you like too much
 
karrie
#6
Quote: Originally Posted by oldnuglyView Post

You are in fact one of the fortunate few Karrie. Glad to hear that.

We have friends who have been diagnosed and they live on meds.

Hope it stays the way it is now or gets better.

Good luck

N'Ugg

Well, I realize that a lot of my ability to keep moving and live a fairly drug free life is due to my relatively young age. I kind of have to expect that it's not going to get better. I already have osteo arthritis in my lower four vertebra, and it's bound to just get worse. So, I move now while I still can.
 
karrie
#7
Quote: Originally Posted by MikeyDBView Post

Karrie

A debilitating and horrible condition, my heart goes out to you.

Thanks Mikey.
 
triedit
#8
I have this too, on top of the degenerative disc syndrome. I have a lovely morning cocktail of two antidepressants (one with an anxiety agent), two anti-migraine calcium blockers and a 10mg oxycontin. Throughout the day I take a maximum of 3 additional endocet. Added to that the car wreck at the end of May which brings twice a week physio which includes accupuncture, stretches, deep massage, chiropractic adjustment, and ultrasound. Which we have to be careful with because I have two steel rods in my back from scoliosis surgeries in the 1970's.

Karrie my love, please PLEASE keep excercising as long as your body will take it. Hopefully by the time you are my age you won't have worse symptoms. One thing I don't have is the arthritis though, and Im ever so thankful for that.

Warm water pool excercises are wonderful but you run the risk of overdoing and making it worse.

We're also testing me for Lupus every year because I have several of those symptoms but am negative for the specific Lupus DNA so far...

No wonder Im such a b1tch, eh?
 
karrie
#9
"...who right off the bat diagnosed sore feet in morning by looking at her lines in her shoes....then onto all her fibro points really hurt when she touched them"

This is how I was diagnosed as well. I'd have to crawl in the mornings because my feet hurt SO badly. When I showed up at the rheumatologist, he sat me down on the exam table, and started what I politely referred to as 'a torture session'. Five points he pressed before I got up and backed away from him across the room. I couldn't tolerate the pain anymore. It was brutal. And of course, they have to confirm 8 out of 11 points before they can make a solid diagnosis. Hellish.

"anyway here is the wierdest of the wierd story, reminds me of Q in star trek when he became human........."

Sleep disorder is pretty much the common thread throughout all of us. Although, each is a bit different. Because I don't get the slow wave sleep, I just sleep and sleep and sleep. I can sleep like a complete zombie for a full 24 hrs if my family lets me, and still wake up tired. My kids are only 7 and almost 6, and they just make themselves breakfast in the morning, because waking me is often too hard. There's days when I'd kill to be able to sleep like your wife. The only time I have ever slept and been conscious of the outside world was when I was nursing my children.
 
karrie
#10
Quote: Originally Posted by DocDredView Post

anyway whats the stuff you don't like taking that you like too much

Oh, forgot to answer this question. lol.

Mersyndol (spelled it wrong the first time), is an over the counter codeine product. It's got three different meds, which work as anti-inflammatory and muscle relaxants. But, I come from a codeine intolerant family. So I take two, sit on the couch and enjoy the feeling of my face melting, and then pass out. It helps the pain, but I only use it as a last resort, for a few different reasons (addiction, tolerance, and the capacity for them to still cause ulcers).
 
triedit
#11
Doc--get you both to a sleep clinic. I have sleep apnea (which is exactly what you're describing) and they put me on a sleep machine. It takes a while to get used to, but it's totally worth it. Some nights I still don't sleep all that well, but most nights it's a really good sleep. I can't imagine trying to deal with pain and anxiety without it again.
 
karrie
#12
Quote: Originally Posted by trieditView Post

I have this too, on top of the degenerative disc syndrome. I have a lovely morning cocktail of two antidepressants (one with an anxiety agent), two anti-migraine calcium blockers and a 10mg oxycontin. Throughout the day I take a maximum of 3 additional endocet. Added to that the car wreck at the end of May which brings twice a week physio which includes accupuncture, stretches, deep massage, chiropractic adjustment, and ultrasound. Which we have to be careful with because I have two steel rods in my back from scoliosis surgeries in the 1970's.

Karrie my love, please PLEASE keep excercising as long as your body will take it. Hopefully by the time you are my age you won't have worse symptoms. One thing I don't have is the arthritis though, and Im ever so thankful for that.

Warm water pool excercises are wonderful but you run the risk of overdoing and making it worse.

We're also testing me for Lupus every year because I have several of those symptoms but am negative for the specific Lupus DNA so far...

No wonder Im such a b1tch, eh?

It never seems to be one problem does it? It always seems to be a compound issue. Like we've taken on all the illnesses so that there can be healthy people. lol.
 
triedit
#13
I grew up believing that God doesn't give you more than you can stand--Im sure that was my mom's way of giving me a coping mechanism. But when my son died in 1982 I pretty much tossed that chit out the window!

But it proved true. I withstood everything thrown at me so far and Im not gonna back down from this one.
 
JoeSchmoe
#14
Fibromyalgia is NOT a diagnosis..... it is a symptom of something much bigger. That's like saying I finally got diagnosed with headaches after several years of having this pain in my head.

Heavy metal toxicity, multiple chemical sensitivity, allergies, dental problems, lyme disease (plus many other things or a combination of them) are some things that can cause the symptom of fibromyalgia. Do some research... the answer's out there.
 
karrie
#15
Quote: Originally Posted by trieditView Post

I grew up believing that God doesn't give you more than you can stand--Im sure that was my mom's way of giving me a coping mechanism. But when my son died in 1982 I pretty much tossed that chit out the window!

But it proved true. I withstood everything thrown at me so far and Im not gonna back down from this one.

There are those things in life that, once survived, make you realize that nothing else life can throw your way can possibly be worse. Losing a child is one of them. I can only imagine how hard it must have been.
 
karrie
#16
Quote: Originally Posted by JoeSchmoeView Post

Fibromyalgia is NOT a diagnosis..... it is a symptom of something much bigger. That's like saying I finally got diagnosed with headaches after several years of having this pain in my head.

Heavy metal toxicity, multiple chemical sensitivity, allergies, dental problems, lyme disease (plus many other things or a combination of them) are some things that can cause the symptom of fibromyalgia. Do some research... the answer's out there.

fluoride poisoning, lack of protein, poor digestion, bad flow of Chi, inadequate hydration, overhydration, lack of serotonin.....

There are TONS of "answers" out there. I spent four years researching every last scrap of info I could find. And while I found at least 50 different 'cures' I could buy, there were no solid scientific answers. Just suppositions.
 
Dreadful Nonsense
#17
Quote: Originally Posted by JoeSchmoeView Post

Fibromyalgia is NOT a diagnosis..... it is a symptom of something much bigger. That's like saying I finally got diagnosed with headaches after several years of having this pain in my head.

Heavy metal toxicity, multiple chemical sensitivity, allergies, dental problems, lyme disease (plus many other things or a combination of them) are some things that can cause the symptom of fibromyalgia. Do some research... the answer's out there.


there are these actual fibro points 18 i believe...They are to do with the nerves connecting the muscles...they get inflamed...they are actual things...when Sandy had a rotator cuff operation(shoulder deal) the doc said her recovery was gonna be a lot longer than a year due to her firbomyalgia...he said when he would do some cutting it would disturb the fibro point.
 
JoeSchmoe
#18
I forgot who DocDred was when I posted to this thread.... if I remembered that he was DITL the Troll I wouldn't have bothered replying. I doubt he has a wife.... but I suppose his imaginary wife could have fibromyalgia.
 
karrie
#19
Quote: Originally Posted by DocDredView Post

there are these actual fibro points 18 i believe...They are to do with the nerves connecting the muscles...they get inflamed...they are actual things...when Sandy had a rotator cuff operation(shoulder deal) the doc said her recovery was gonna be a lot longer than a year due to her firbomyalgia...he said when he would do some cutting it would disturb the fibro point.

What he's trying to say though Doc (and he's not entirely wrong), is that something is causing the fibromyalgia, and the docs don't know what it is. Fibromyalgia is really just a term developed to describe the symptoms of something that docs can't figure out. It doesn't mean it's not there, but, when a doctor tells you that the problem is Fibromyalgia, it's like answering a question with a question. They can't tell you what causes the pain, or the tender points. They can't tell you WHY we can't sleep right. They can't tell you why the weather screws us up.
 
karrie
#20
Quote: Originally Posted by JoeSchmoeView Post

I forgot who DocDred was when I posted to this thread.... if I remembered that he was DITL the Troll I wouldn't have bothered replying. I doubt he has a wife.... but I suppose his imaginary wife could have fibromyalgia.

This is your response to an actual post? Seriously? His post didn't warrant that.
 
Dreadful Nonsense
#21
Quote: Originally Posted by karrieView Post

What he's trying to say though Doc (and he's not entirely wrong), is that something is causing the fibromyalgia, and the docs don't know what it is. Fibromyalgia is really just a term developed to describe the symptoms of something that docs can't figure out. It doesn't mean it's not there, but, when a doctor tells you that the problem is Fibromyalgia, it's like answering a question with a question. They can't tell you what causes the pain, or the tender points. They can't tell you WHY we can't sleep right. They can't tell you why the weather screws us up.

Well according to the rheumatiod doc she said it's everything to do with sleep...people that do not sleep properly get ill.....
And Sandy does not sleep...my argument is the 2 mg. lorazapm is not enough...i would like to see a knockout punch 3 times a week...with like nembutol or seconal......I pointed out that a lot of the modern day drugs take longer to metabolise leaving a hang over...the lorazapam doesn't but this other crap did...Nembutol she said is like ver rarely used today...only with like super agitated senior patients in care...

I beg to differ for i know 5 mg of that stuff and wham she is out for the next 12 hours......3 times a week would prolly do the trick.....
 
Dreadful Nonsense
#22
Quote: Originally Posted by karrieView Post

This is your response to an actual post? Seriously? His post didn't warrant that.

not worth the bother karrie
Last edited by Dreadful Nonsense; Jul 18th, 2007 at 11:54 AM..Reason: don't need the rehash////plugh shares and all that rot
 
karrie
#23
Quote: Originally Posted by DocDredView Post

Well according to the rheumatiod doc she said it's everything to do with sleep...people that do not sleep properly get ill.....
And Sandy does not sleep...my argument is the 2 mg. lorazapm is not enough...i would like to see a knockout punch 3 times a week...with like nembutol or seconal......I pointed out that a lot of the modern day drugs take longer to metabolise leaving a hang over...the lorazapam doesn't but this other crap did...Nembutol she said is like ver rarely used today...only with like super agitated senior patients in care...

I beg to differ for i know 5 mg of that stuff and wham she is out for the next 12 hours......3 times a week would prolly do the trick.....

Yeah, but knocking the person out with drugs doesn't actually bring on the slow wave sleep they need. We don't have meds that do that. You can make them seem to sleep deeper, you can make them stay asleep longer. But you can't bring on the slowwave sleep, the restorative stages that heal our bodies, no matter how hard you try. There's where docs end up really stumped.
 
Dreadful Nonsense
#24
Quote: Originally Posted by karrieView Post

Yeah, but knocking the person out with drugs doesn't actually bring on the slow wave sleep they need. We don't have meds that do that. You can make them seem to sleep deeper, you can make them stay asleep longer. But you can't bring on the slowwave sleep, the restorative stages that heal our bodies, no matter how hard you try. There's where docs end up really stumped.

hmmmmm...lol ..
My wife begged me not to ask her doc for barbituates....Twice i brought up the subject and twice i got not the response i wanted lol...
The doctor really did not explain the way you just did. It makes perfect sense... i guess those hormones that do the repair only come out on thier own then.....can't they isolate the hormone in question and like do the ARNIE thing for us?
 
karrie
#25
Quote: Originally Posted by DocDredView Post

hmmmmm...lol ..
My wife begged me not to ask her doc for barbituates....Twice i brought up the subject and twice i got not the response i wanted lol...
The doctor really did not explain the way you just did. It makes perfect sense... i guess those hormones that do the repair only come out on thier own then.....can't they isolate the hormone in question and like do the ARNIE thing for us?

Well, I'm sure there are scientists working on it. I know that there was once upon a time a tryptophan supplement which claimed to increase regenerative sleep. Killed a bunch of people. Certain chemicals just have disastrous consequences when you start pumping synthesised versions into the system.
 
Dreadful Nonsense
#26
Quote: Originally Posted by karrieView Post

Well, I'm sure there are scientists working on it. I know that there was once upon a time a tryptophan supplement which claimed to increase regenerative sleep. Killed a bunch of people. Certain chemicals just have disastrous consequences when you start pumping synthesised versions into the system.

In any case we both agree on the one solid factor...sleep disorder

Firbromaylga was considered this airy fairy concept for one of our GP's here in Toronto...He was ticked off when she was diagnosed it....his words"A lot of my patients are coming out of her office with this diagnoses". He didn't say much else , kept his mouth shut..You got the impression he wasn't happy..then a few months later he was talking to her sympathetically and like this was a real desease.
 
karrie
#27
Quote: Originally Posted by DocDredView Post

In any case we both agree on the one solid factor...sleep disorder

Firbromaylga was considered this airy fairy concept for one of our GP's here in Toronto...He was ticked off when she was diagnosed it....his words"A lot of my patients are coming out of her office with this diagnoses". He didn't say much else , kept his mouth shut..You got the impression he wasn't happy..then a few months later he was talking to her sympathetically and like this was a real desease.

My doc was frustrated as well when I was diagnosed. Largely because, at the time, all the docs were being fed the depression schpeel.... pain and exhaustion are symptoms of depression, so prescribe anti-d's. They were so brainwashed into it that I HAD to go on the anti-d's before they'd look for any other answers. Only once I was on the anti-d's and still having pain would they even consider that I needed something more than just a handful of pills and a condescending pat on the back. BTW, for anyone who isn't clinically depressed (as I never was), letting docs pop you on meds and screw with your brain chemistry is a recipe for disaster.

When I came back from the rheumatologist with a diagnosis, it was almost as if they didn't believe him. They could NOT let go of the depression idea. I was so glad when I moved and could find a new doc.
 
Nuggler
#28
Quote: Originally Posted by DocDredView Post

not worth the bother karrie


Good comeback Doc. (Sorry to hijack the thread)

No evidence of yer trollin yet.

Good on ya.

Be nice.........................like me................:l ol: OH lord, just peed me pants.

 
Dreadful Nonsense
#29
Quote: Originally Posted by oldnuglyView Post

Good comeback Doc. (Sorry to hijack the thread)

No evidence of yer trollin yet.

Good on ya.

Be nice.........................like me................:l ol: OH lord, just peed me pants.

lol....thanks man...i actually had to edit it though....winkety wink....
I don't think the *bored* (pun) need another round of this.....

i gotta say one thing though........

yer the only guy here that pees his pants during a hijacking......
what kinda terrist r ya?
 
Cosmo
#30
Quote: Originally Posted by DocDredView Post

I notice a lot of folks here have it. My beloved has it and it has really effected her life on sooo many levels....It took 10 years to get it diagnosed....sleeping pills are her only treatment....

Hi DocDred,
Sorry for being so late on the uptake for this thread but I've been MIA awhile.

First, condolences to both you and your wife. I have fibro as well and it's not just tough on the one who has it, but on the partner as well. Your support probably means more to her than you can know.

JoeSchmoe ... up yers. Folks with fibro have a tough enough time without people like you undermining their diagnosis. You know the old saw about walking a mile in my stilettos before commenting, dontcha?

Like any other disorder, fibro probably has some underlying cause such as those you mentioned. Bit like heart disease caused by too many big macs. That doesn't negate the result of the disease. Fibro is real and I wouldn't even wish it on someone like you who seems to speak out of the wrong end of their anatomy.

There is an interesting site ... fibrohope.org that I go to. "The NFA and Pfizer have partnered on an educational campaign to help raise awareness of fibromyalgia. This campaign is supported through a sponsorship from Pfizer." Despite the drug company being involved it's got good info.

I finally quit whining and just take my drugs. I believed all the crap about narcotics being bad, drugs being bad, etc. etc. etc. and all that happened to me was I got sicker. Now I do what I need to in order to have a relatively normal life. Folks like Joe are just another annoyance.
 

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