at this Point, I would Not..as I have found some help thru Alterantive Remedies...have found No Cure, but I believe I have gotten myself just as Comfy as anyone on Meds, with No Side Effects !! Well...No Bad Side Effects anyway !

GL to you in whatever ya decide to do !

Personally, I've been used as a guinea pig long enough. I've gotten nothing but the side effects of all the FM drugs and would be a bit nervous about signing up for a research project.

1st off congradulations on the baby girl. Second, I am a big chicken, so no I wouldn't do it, but you go girl and let us know everything.
Hugs
Cinda

I am in a medical study for FM using the medication Xyrem. It has already been approved through the FDA for narcolepsy and cataplexy and is now being studied for FM. I have had some improvement (though not total) with the medication, as have some of the other patients in the study. The Xyrem is GHB (the date rape drug) that allows my body to go into a deeper sleep. Sleep was/is my biggest problem. The pain is bad enough, but without the sleep it was so much worse. The study paid for a sleep study to be done and it found that I was not going beyond stage 2 (out of 4 stages) of sleep. I have only been on the medicine since August, and my understanding is that it can take a long time for the body to recover from lack of sleep for so long. As I said, I am noticing some differences. I can now stand and do dishes and dust. I still can not vacuum or use a broom. I still have too much pain in my arms,legs and hips. Feel free to PM me if you would like :)

Hugs,
Bobbi

I have done it before for a drug would never do it again unless the drug had been on the market for thousand years and I was against the wall for pain management. I know we all want somebody esle to do the testing. It is sad but I do not think my body can take much more of crap being put into it. Just me.

Hi there!

I signed up but I decided at the last minute not to go through with it. Only because at that point I learned that I was allergic to so many meds, Lyrica, Neurontin, Cymbalta and a few other antidepressants. I'm also allergic to a large number of antibiotics.
This study being done here in Minneapolis was based on psych meds and how they work on Fibro patients. They wanted me off of all pain meds. Even Tylenol. So, that too made me decide not to participate.

Good luck to you and Thank you for doing this. And Congrats on the new grand baby!

I would participate in an alternative treatment study but not a medication one. Congrats on the new granddaughter!

I wish you success on the new treatment.

" thanks for the replies,
Now you all have me thinking, and most are right...it does scare the hell out of me to think about some of the side effects from a drug that had not been approved. Heck..some of the ones that I have taken that have been approved have given me some REALLY BAD SIDE EFFECTS....I just feel so damn helpless!!
DakotaRose, ..I am curious ..what alternative remedies are you doing now to help relieve some of your pain?
I was really hoping that I could find a FM research that is going on, more for the testing...you know...doing Brain Scans, MRI's, CT Scans, those kinda things...to maybe find there is something going on SOMEWHERE that is causing this. Wishful thinking maybe huh?!?...
The reply from Bobbi sorta scared me...dont know if I would want to do the whole..Xyrem thing....Bobbi...have there been any bad side effects from this?..
Thanks again...and thanks for the congrat's on my new granddaughter.
I am still going to do more researching for other FM studying being done. I am just sick and tired of this...day in and day out!...
Hugs to all
Lori

Just to let you know--there IS something that causes this. The French recently discovered the CAUSE of fibromyalgia -- at least-- what they believe is one of the causes. They did a special brain scan that controlled for depression and found that women with Fibromyalgia had less BLOOD FLOW to the BRAIN! Either through some sort of trauma or something else--WE LITERALLY ARE NOT GETTING ENOUGH BLOOD TO OUR BRAINS!!!! Now, I am glad people find relieve through alternative treatment and I myself find relieve through SOME alternative means, but, there is something PHYSICALLY wrong with our brains that NEEDS to be corrected. Look up the study through the Washington Post. The New York Times did a story to.

Best!

Let me correct myself--We have blood flow abnormalities. We get TOO much blood in some areas, not enough in others. I just wanted to emphasize though that all is not right in our heads--literally! LOL!! :)

Lori,

The only side effects I have had from the Xyrem were in the very beginning. My body obviously was not used to such a powerful substance so I did have some cataplexy (known side effect) in my legs. I felt as if my legs had grown roots into my recliner within about 10 minutes of taking the medicine. That happened only after I took the medicine and was gone by the time I woke up the next morning. I no longer have those side effects. And I still wake up once during the night, usually about 3 hours after taking the medicine and have to pee....LOL. The medicine is sodium (salt) based and makes me very thirsty, therefore trips to the potty are in order. The absolute worse part for me is the taste. We ever-so-lovingly refer to it as demon piss at my house......LOL. The pharm company is working on a pill form for the xyrem but as of right now it's only in liquid form. I mix it with an ounce of v8 juice and down it. I gotta go straight to bed cause it only takes about 10 minutes for it to knock me out.

Let me state......I understand anyones opinion on entering a study. I only did it because I could not get my doc to do anything. I had no choice. My HMO only allows me to change doctor's once a year, so finding a new doc that possibly would help me was out of the question. My fibro doc through the study is so nice and caring. He re-affirms to me every time I see him that if for any reason I don't want to continue in the study that he totally understands if I decide to back out. The girls at the clinic call me to check on me and they even called me on my birthday :) I am very pleased with the whole experience. I am lucky because I cannot take alot of medicines because of sensitivties, but I have had none with the Xyrem. I won't go so far as to say that this medicine has been life changing, but it has given me hope and at this point that's all I can ask for :)

Soft hugs :)

Bobbi

llk..My natural remedies started out 1 year ago...very Important to get a Plan...a Routine and STICK with it...Give it Time to work...do Not Expect Immediete Results...

I do Not know where you are within this Deisease...but I was On my Knees, getting ready to lay down...I was SO Sick...I am "Med Sensative" in other words my body tends to Over Respond to meds, and I Almost always get the nasty Side effects..so Meds for ME was NOT an Option...

I have had a Good "Massage Therapist" for several Years...and a good "Chiro"...yet still I flailed...muscles kept getting weaker...having a hard time with Everything...I could Not Exercise...would CRASH everytime...


then I met a PT {Physical Therapist} he taught me all over again HOW to Exercise...when NOT to exercise...I had to start at ground Zero...I had been very Athletic my Whole Life...I was Confused...didn't Want to start at the Bottom...but it Important that you do so.

he started walking me around in a Heated Pool...for Several weeks that is ALL we did...then he started having me actually work out...then walked me thru "The River"...it is an area within our Pool that you walk Against the Current...

I Crashed many Times...wanted to Give up many Times...as Soon as I would Crash, he took me back to the "beginner level" or what he calls a "Maintenence Level"...keep me there til I regained a bit of Strength, would move me back into the level we were Currently at...

I Did Not Quit...I have stuck with it...within a short period of time I Realized I was Moving again...and No fear !! some areas that had been SO painful to Touch were Losing the Sensativity factor...we were getting my Muscles to Fully Relax...WoW !!

so I go to my Massage Therapist every 2 weeks...I go to my Chiro less and less all the time because I am Able to do Strength Training Exercises within the Pool I simply could Not do on land ...why ?? because of many reasons...The water Holds you where your are supposed to be...muscles and Joints are NOT Fighting Gravity...also...your Arteries Open up Completely while in water...the Pressure of the water does this...and so you Can work out Much Longer and harder...with very Little {IF ANY} stiffness afterwards...

last November, when i First started, I Could Not sit up straight...Mid back Muscles would Spasm in pain when I tried...I Could Not walk from my bed to my bathroom without Horrendous Pain in my Hips/legs...I had suffered Daily headaches for 10 years...I could not turn my head...my right ear would at times Plug up...was very bad...No Dr. could help me thru ANY of it.

I have Lost 30 pounds...Headaches are GONE...I have had less then a Dozen headaches in the past year...most of em were around my cycle...i can fully use my arms, turn my head...I can WALK !! this Amazes me !! I can Go Up and Down my basement steps all the day long doing laundry...where before I Actually suffered Anxiety at the thought of having to do laundry...and would stay in our nasty basement all the while doing it...that is Now a Non-Issue...I have Blockages in my legs...so I have THAT Pain on top of the Pain of Fibromyalgia...but I am Pushing thru...I can Now walk 2 Miles...maybe needing one break...maybe needing more then that in the week before I cycle...but a Year ago I would NOT have even attempted it...could not make it anywhere...

Get a Plan...get some Good "Hands On Therapists"...start a Journal...wriing Everything in there...make it Fun...pictures, quotes that are Inspirational...I have included within my journal some writings from this board...anything that will help to Motivate you...keep this up Everyday...you will soon see small patterns start to emerge in the Smallest of Details...and you will be more inclined to act on what these patterns are telling you...Oh...Geeez...everytime I eat a Dozen Milk Duds, I get an Attack of trigeminal Neuralgia...whenever Deans brother pisses me Off...I get sick...a Journal will tell ya whay you NEED to do in your Life to get the TOXINS out !! yes, Even the Human ones.

1.Massage Therapy
2. a good Chiro
3. Pool Therapy...even if you do Not have a Physical Therapist...you can still go work out in a Pool !!
4. go and Stay Slow...Baby Steps !!
5. Invest in a Journal...a dated one...with lotsa room to write. keep track of Feelings, moods...food, weather...stress levels...everything and anything you can think of...
6. Supplements...get your Vitamin Levels checked...you may be surprised at how low you are in several areas...and Buy your Vitamins from a Local Health food store, as Opposed to walmart...tho walmart MAY be cheaper...you very liely are also not getting very much of what you need...there are REASONS they are cheaper...

7.Demand Respect..From everyone
8. don't overwhelm Anyone with whats going on with you...come talk to us...give those you Love all your good stuff...leave your bad stuff here with us...we can handle it with you...
9. always do as much as you can, for as Long as you can, STOP before Fatigue or soreness hits...this will help you to keep from Flaring so often..
10..Lose ANY Guilt you may have because of all the Things you can simply No Longer Do....just throw that useless Emotion right out the freakin Window..
11. Remember to have some FUN...Oh, you have not enugg Energy to clean the House AND have fun ?? then let the house GO for a bit...have some FUN instead !! Fun is Just as Important to your health as Anything...!!

Oh...this got long...I am a Talky thing !! Sorry !! Hugs for you this day !!

I have been asked to participate in a study at the Diablo Clinical Research group.

I decided not to particpate because I would have to go off all my meds for 15 weeks and it was just to far to travel to.

I don't think I want to be the guinea pig. Let someone else do it and then tell me if it works.

Oh, and I forgot to mention that you may receive the placebo and not even get the real drug.

Great ideas Dakota! I have to find a good physio. I know those exercises the doc gave me (in my photo section) have helped but think I need the overall fitness.