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Critical New Piece of Fibromyalgia Puzzle Found?

  [ 719 votes ]   [ 51 Comments ]
By Rich Carson • www.ProHealth.com • September 10, 2007


Pieces of the Fibromyalgia puzzle are slowly falling into place, and researchers have been moving toward a unified theory that explains the etiology and pathogenesis of the disease.

While the conviction among the majority of Fibromyalgia researchers is that Fibromyalgia represents a significant sensitization of the brain and spinal cord, some leading researchers have formed a theory that takes the "Sensitization Theory" a step further, to what can be called the "Hippocampus Hypothesis" or "Dopamine Hypothesis." This fascinating theory states that FM is primarily a brain dysfunction resulting from stress-induced physiological changes to a part of the brain called the hippocampus and to the important neurotransmitter that it regulates - dopamine.

Specifically, the hippocampus is extremely sensitive to stress, and in fact is the brain organ that enables us to respond to environmental stressors in a way that helps us avoid danger. The best example of the beneficial stress response is when our ancestors crossed paths with a saber tooth tiger - an immediate "fight or flight" response was mandatory to ensure survival.

Studies have shown that chronic stress, however, can contribute to a disruption of normal hippocampus function. The hippocampus plays a major role in pain perception and memory formation, and it is involved in controlling the production of that crucial brain neurotransmitter, dopamine. Dopamine abnormalities have been linked to "restless legs syndrome," increased pain, and feelings of self doubt, anxiety, and problems with memory formation.

If the "Dopamine Hypothesis" is correct, then it is reasonable to assume that drugs that restore normal dopamine levels and activity in the brain should have a therapeutic effect when administered to Fibromyalgia patients.

And this is where the "Dopamine Hypothesis" picks up steam. Andrew Holman, MD, conducted a controlled, double blind study of the drug pramipexole with several Fibromyalgia patients. Pramipexole, sold under the brand name Mirapex™, is approved for treatment of Parkinson's disease - a primary dopamine disorder. Patients experienced significant improvement in their symptoms. Another drug that affects dopamine and has been approved by the FDA as a treatment for restless legs syndrome - ropinirole - also met with remarkable success in another Fibromyalgia study conducted by Dr. Holman.

All told, the Dopamine Hypothesis looks promising for several reasons. It ties in nicely to the pathogenesis of the disease - that the onset of Fibromyalgia frequently occurs during times of prolonged or intense emotional or physical stress, when the hippocampus may become overworked and become dysfunctional as a result. And it ties into the fact that dopamine, which is largely regulated by the hippocampus, may cause many of the symptoms of Fibromyalgia when its levels are unregulated.

I would like to acknowledge Patrick B. Wood, MD, and Dr. Holman for their brilliant work with brain imaging, neurotransmitter physiology, and creative pharmaceutical approaches to normalizing/regulating dopamine in Fibromyalgia. Their work has proven beneficial to many Fibromyalgia patients and may hold promise for treatment of millions more. I applaud their bold, creative, and compassionate work.

Dr. Wood explains the Dopamine Hypothesis in easy-to-understand language, using computer generated graphics and patient and doctor interviews in the acclaimed Fibromyalgia DVD "Fibromyalgia: Show Me Where It Hurts". To purchase a copy of this DVD, please visit the ProHealth store.

Wishing you health and hope,

Rich Carson
ProHealth Founder and ME/CFS Patient [Note: This Founder's Corner is repeated from a past issue of FM Treatment & Research News, by reader request.




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Stress related
Posted by: njnorris
Sep 12, 2007
This is an interesting connection to stress. I am 60 now. Due to life's circumstances severe stress has been a constant companion since my earliest childhood memories. As a young and middle-aged adult, I sometimes wondered how the extreme anxiety and fear I was experiencing could exist without affecting me physically as well. I have chosen to live unmedicated for all but the most severe episodes of anxiety and fibromyalgia pain. While not diagnosed until 10 years ago, I recall vivid episodes of mild exertion followed by severe pain as early as age 18 - with peak problems in my late 20's. My son's service in Iraq and lingering injuries have escalated stress levels in the past 3 years. Now even the slightest change in my physical routine results in flattening pain and fatigue. It would be interesting to note the side effects of the drugs administered to those in the study, as all aspects must be considered to decide. Since the drugs are approved for other conditions, it should not be hard to have a doctor prescribe the medication as a trial.
Reply Reply

 
Requip is wonderful
Posted by: bettemabry
Sep 12, 2007
I have suffered with FM since 1991 and am now 63. My FM was brought on by an auto accident, which included need for spinal fusion in the neck. Other stressors continued over the years. I can remember suffering from restless leg back into my 20's. I now have lower back disc degeneration with pain, numbness, tingling, etc. When it flares up, restless leg is worse. Many years ago (over 7 years ago) I went to a restless leg support group and heard about research going on at Emory University in Atlanta, GA for using requip for restless leg. The researchers spoke at the meeting. I took my handouts from Emory to my rheumatologist in Atlanta, asking her if I could try the requip. Based on the handouts and our excellent patient-physician relationship, she agreed to let me try it. After experimenting with different dosages, I now take 1 mg. three times a day. If I get off schedule, I immediately have problems for the rest of that day. My doctor refers to me as her "first" requip patient. Additionally, my FM has not been as severe on a daily basis. Of course, I have flare-ups, but usually they are related to other things, like my sjogren's, DJD, shingles, family stress, overdoing, etc. I am glad to see this research in the accompanying article.

 


Stress Makes Sense
Posted by: suemorr
Sep 12, 2007
It makes perfect sense to me that it would relate to stress. I'm 55 and have had quite a few stressful experiences since my teen years. "Fight or flight" and I are old friends. I had read a previous article about dopamine being very helpful with FM symptoms. How wonderful that progress is being made, and someday soon our pain will be gone.
Reply Reply

 
That's great they agree, my husband figured that out a while back
Posted by: claudiaw
Sep 12, 2007
just from all the research he has done on his own to try to help me.

Unforunately for me, Mirapex among many other drugs, may help alittle, but the side effects for me are alway's, so bad (they include constipation, headache, dizziness, etc. thing's I ALREDAY have!)I have to quit.

I wish I could find a doctor who would actually look at MY OWN chemistry make-up, chech MY seretonin and dopamine levels to see what I need. Then go from there with medication or supplement's or whatever. We are all different.

I heard of DNA testing to see what dose was right for a patient, I think that is great. That would be great to do for dose and medication.

I have been stresses all my life, grew up in an unhappy home, mom died when I was a teen, on and on.

I'm convinced constant stress at the very least contributes to this ask anyone with FM, we'll could have told you that!:)

Stess lower's immune function , depletes adrenal's, that has to set other body functions off course.

I'm glad it is being studied, I just wish docotrs would do more than just give everybody the pills, we're not lab rats.

 

 
STRESS MAKES SENSE
Posted by: funluvn55
Sep 12, 2007
ALL I CAN SAY IS MY LIFE HAS BEEN FULL OF STRESS. SINCE CHILDHOOD...I HAD THE MOST WONDERFUL MOTHER IN THE WHOLE WORLD! IF NOT FOR HER I WOULD NOT BE HERE!!! THEN....I HAD THIS MOST HORRIBLE ALCOHOLIC FOR A FATHER WHO WAS MEAN UNTIL I WAS 18. ! THEN HE GOT HIS ACT TOGETHER AND WENT TO AA. BUT A LOT OF DAMAGAED WAS DONE. I HAVE FORGIVEN HIM AND LOVE HIM TO THIS DAY. HE IS A GOOD FATHER NOW. THANK GOD.

I HAD MY FIRST TUMOR ON A OVARY AT 21. THIS WAS THE FIRST OF 18 DIFFERENT SURGERIES OVER MY LIVE. I AM NOW 50 YEAS YOUNG AT 23 I GOT MARRIED AND HAD MY DAUGHTER, SHE HAD A STROKE AT BIRTH. SHE IS NUMB ON HER WHOLE LEFT SIDE, HAD EPILEPSY AT 7 THROUGH 13, BI POLAR AT 18. NOW AT 25 SHE IS MARRIED AND IS DOING WONDERFUL :O)! PRAISE GOD. MY SECOND CHILD HAS ADD AND SUFFERS FROM DEPRESSION. HE IS NOW 23, AND IS ON AND OFF HIS MEDS.... WE ADOPTED A THIRD CHILD WITH ORGANIC BRAIN DAMAGE AT AROUND 15 MONTHS. HE IS NOW 16 YEARS OLD AND I CAN NOT EVEN GO INTO THE AMOUNT OF MEDICAL PROBLEMS WE ARE HAVING WITH THIS BEAUTIFUL CHILD, YET SO ANGRY AND DIFFICULT MEAN CHILD...SOMETIMES HE CAN BE THE PERFECT SAINT WHEN THE MEDICATION IS WORKING RIGHT!! MY HUSBAND AND I HAVE TO LOCK OUR BEDROOM DOOR AT NIGHT TO PROTECT OURSELVES FROM HIM.

YES, I DO BELIEVE MY LIFE IS FULL OF STRESS. THIS IS WHY I AM SO SICK. I DO BELIEVE I HAVE TO BE PRO ACTIVE! I HAVE TO WORK ON HEALING MYSELF WITH IN MYSELF! RELEASING! LETTING GO! I AM LEARNING....IT'S A PROCESS... I JUST WENT TO A NEW DR. YESTERDAY AND HE PUT ME ON LYRICA 50 MG. I AM GOING TO WORK UP TO 3 TIMES A DAY. I HAVE NO IDEA IF THIS MEDS. IS ANYTHING LIKE THE OTHER MEDICATION THAT THIS DR. IS TALKING ABOUT. BUT I AM GOING TO COPY THIS ARTICLE AND BRING IT TO HIM IN 3 WEEKS WHEN I GO BACK. I AM GOING TO START EATING BLUE BERRIES. THANKS FOR THE HOT TIP! I KNOW THAT WAS FROM ANOTHER PERSON WHO WROTE IN. GREAT IDEA, I DID NOT KNOW HOW MUCH GOOD IT COULD DO FOR YOU. I AM NEW TO ALL THIS. I HAVE LOST 33 POUNDS IN THE LASTS 5 MONTHS...MY BODY IS REALLY FALLING APART, MY JOINTS ARE KILLING ME AND I AM ALWAYS FREEZING. WHEN PEOPLE TOUCH ME IT REALLY HURTS.

IF YOU WANT TO LOL LISTEN TO THIS... I LIVE IN SUNNY CA IT'S 90 OUT SIDE RIGHT NOW I HAVE ON 3 PAIRS OF SOCKS MY FEET ARE ICE COLD. THEY ARE FROZEN. I JUST CAN'T GET THEM WARM, I AM WEARING JEANS WITH BLANKS OVER MY LEGS, A SHIRT WITH A LONG SLEEVES AND SWEAT SHIRT. I HAVE TO FIND THE HUMOR IN THIS OR I WILL GO CRAZY.. I AM LAUGH OUT LOUD WHILE I TYPE THIS COMMENT ON MY COMPUTER.

WE ARE ALL LEARNING...OH AND I AM READING A BOOK, YOU CAN HEAL YOUR LIFE BY LOUIS L. HAY. IT'S WONDERFUL! I HAVE TO GET BETTER. POSITIVE THINKING! I AM ALSO TRYING BIO FEEDBACK FOR THE PAIN. GOSH IT TOOK A WHILE FOR ME TO LEARN. BUT IT WAS WORTH IT. IT DOES HELP! I REFUSED TO LIVE THE REST OF MY LIFE IN SUCH HORRIBLE PAIN. I HAVE TO HEAL MYSELF! :O)!!!

GOD BLESS AND PEACE 2 U ALL ALWAYS! BE HEALTHY! BE ALL THAT YOU CAN BE! AND MORE! LIVE YOUR LIFE NOW! IT'S TODAY! NOT TOMORROW!!!

FORGET ABOUT YESTERDAY IT'S GONE....

PEACEEEEEEEEEEEEEEE AND LOVEEEEEEEEEEEEEEEEE ALWAYS!!!! XOXOXOXOXOXOXOXO LIVE FOR TODAY

 

 
Its right for me!
Posted by: suesmiley
Sep 12, 2007
After seeing the video 'Show me where it hurts' and reading the research, suddenly everything made sense! After having minor operations on my nose and throat to sort out my sleep apnea and taking 'Sinemet' for my restless legs, the 'fibrofog' is disintergrating, life is becoming much clearer now and because I am sleeping better I don't have so much pain! Two years ago I started eating blueberries every day (full of antioxidents), I notice a big difference when I don't eat them. I still have to watch what I do, but I have regained control of my life, all my thanks to Drs. Wood and Holman, keep up the good work!

 


Fibromyalgia and the brain
Posted by: Hamm40
Sep 12, 2007
It makes a great deal of sense to me that stress plays a very important role in Fibromyalgia. I have had my Mother to die of cancer. Then my Brother dropped dead of a heart attack, my Father has two types of cancer and I am his caregiver. I also have a shadow over my left breast and lymph node swelling in my armpit and I'm only 41.
Reply Reply

chronic stress
Posted by: suzetta
Sep 12, 2007
Can chronic stress be industrial related? Can this theory be used as valid findings in a court of law? Please respond. Thank you. Suzette
Reply Reply

Requip is wonderful
Posted by: bettemabry
Sep 12, 2007
Requip has been a part of my medications for over 7 years. In 1991 I was injured in an auto accident and among my injuries was the need to have 3 vertebrae fused in my neck. Next I developed FM. Other health issues developed including sjogrens, degenerative joint disorder in lower back, etc. I have suffered with restless leg since my 20's. As time went on it became worse. About 7 years ago I attended a support group meeting for people with restless leg syndrome. Some researchers from Emory University Medical school (in Atlanta, GA)spoke about requip being studied for RLS. I took the information sheets to my rheumatologist and asked if I could try the requip. Given our excellent patient-physician relationship, she agree to let me try it. After trying different dosages, I found relief with 1 mg three times a day. If I get off schedule, the rest of that day is difficult. I feel that this has also helped my FM, except for flare-up times with stress, injuries, other health issues such as sjogrens, hypothyroid, etc. I am glad to see this article, especially because of the experience I have had since attending the Emory researchers meeting. (As a side note, at that time they were doing lots of research about the issue in the island of Iceland.)
Reply Reply

 
iceland and fms
Posted by: fotograf
Sep 13, 2007
could you elaborate? not sure if this was a study or asituation cocerning the population thanks, fotograf

 

 
ropinorole is requip
Posted by: bettemabry
Sep 18, 2007
For those of you who didn't recognize the drug name ropinorole, it is requip.

 


Fatigue
Posted by: blueotter
Sep 12, 2007
I have had fibromyalgia for almost 24 years -- at least the extreme fatigue part has been with me that long, and the pain has been there longer, though I was told it was in my head because I was so young. When I search my memory, I can't say I've had severe stress, but then I suppose stress affects different people differently. These days I have a skin/apocrine gland problem that is highly affected by stress, and I can honestly say that everyday stresses Do Indeed have an impact! Who knew? My immune system is otherwise very healthy -- I take some very powerful supplements that seem to keep away colds, restless leg, and most of the skin problems -- but absolutely nothing has been able to touch the fatigue. I heard of a new drug that came out this summer (2007) that is given for fatigue (can't remember the name, sorry!), but haven't tried it yet. My doctor said she never heard of it, and won't prescribe something unknown to her, but then I am in the process of finding a new doctor who lives closer to me, anyway -- the fatigue tends me make me a Champion Procrastinator. As soon as I relocate the name of the drug and find a closer physician, I will try to post the name of it here. Is there hope?
Reply Reply

 
Possible name of medication
Posted by: fool4seafood
Sep 12, 2007
By any chance could the medication you heard about be Lyrica? I know it was approved on June 21 for the treatment of Fibromyalgia, with pain reduction and FATIGUE reduction being touted as it's benefits.

You referred to your immune system in your post. I have a positive ANA, and they have labled me with "Undifferentiated Connective Tissue Disease"..thinking it will manifest itself fully as Lupus one day. I also have restless leg syndrome, and two anxiety disorders. I have read that restless leg syndrome, anxiety disorders, fibromyalgia, and other conditions tend to ride piggy back to Lupus. The one thing that most of these illnesses have in common is messed up dopamine release in our brains. Oh, another one is Irritable Bowel Syndrome. Stress (not enough dopamine for us to cope properly with it) aggravates that as well.

I know the fatigue from Fibromyalgia is horrendous in my case. People do not understand, and it has ruined two long-term relationships for me. They just think I'm lazy. Even though I literally fall asleep sitting up, they don't understand I can't help it. I'm hoping the Lyrica helps it.

I'm very nervous and hesitant about the two drugs mentioned in the Doctor's article as new forms of treatment if the dopamine idea is accurate, as it mentions mood changes as a side effect, as I am also Bi-Polar. I guard against mood swings literally on a daily basis. It's a full-time job to stay healthy with that particular disease. Last thing I need is mood swings.

It is very exciting to see them finding REASONS for fibromyalgia though, isn't it?! I take Clonazepam for the anxiety disorder, and it also treats the restless leg syndrome...perhaps if they were to increase my dose of that..it would help the Fibro? Something new to suggest to my doctor, in lieu of this new study.

Take care, and I hope you feel better!!

Oh, also, my fibromyalgia kicked in when I had gone through a horrendous stressor in life, and was crying every single day. I was unable to make the stress a thing that I could handle..next thing I knew (after about two years of this) I was in intense, mind boggling pain, bed ridden, then in physical therapy, diagnosed with "Fibromyalgia"..I still don't have my mobility back..And another round of PT looms in the near future..yippee skippy.

 

 
Medication for Energy
Posted by: razzilou
Sep 12, 2007
Hi Blueotter!

The drug you're trying to recall the name of might be "Provigil". You can get some info on the web about it to take to your doctor -- I've been using it "as needed" for days when the FMS & attendant medications for it make me feel like I have to sleep every time I sit down. It's VERY good -- not like old-fashioned "uppers" . . . but works to keep you alert and give some added energy. It was originally developed to treat narcolepsy. My doctor also recently started me on the new drug "Lyrica" and I'm definitely one of the "responders" to this drug (apparently either you are or you aren't!). My pain levels have improved at least 70-80%.

Good luck to you with your search for treatment and a compassionate doctor!

Best, "Razzilou"

Robin Potter Annapolis, Md.

 

 
Name of drug
Posted by: jggoldlady
Sep 14, 2007
Hi, is the name of the drug you are trying to find Provigel? That is a new drug that came out that is being used to treat people that have trouble staying awake when they work night shifts, sleep apnea, narcolepsy, and other sleep disorders. My docter ordered it for me and I tried it, but my insurance had such strict criteria for approving it, that I gave up and went with adderall. Besides the fact the one prescription cost me $100.00 with insurance and I have a HMO. I would of had to have sleep studies done and the whole 9 yards. Adderall works great for me. I take 10mg in the am and 20mg in the early afternoon and it is much cheaper! I have CFS and Fibromyalgia. I have a friend with MS that is taking Provigel and it works great for him, but like me he is fighting the insurance company trying to get it approved. A nurse friend of mine who works with a nutrionist suggested I test my saliva for my PH and it was acidotic. It was 6.0 and it should be 7 or 7.5. Another reason for my fatigue. I have an appt with her today to see if she can help me with all of my problems. Im like you Im 52 and was first diagnosed when I was 28 after having Mono. Did not mean to go off on a tangent, just wanted to let you know the name of the drug if that is what you were looking for. GOOD LUCK! I hope it works for you and your insurance pays more for it than mine did. If you are interested in any information I find out today, Just write me back. Joan jggold@cox.net

 

 
immune system
Posted by: momof2inky
Sep 13, 2007
Hi Blueotter,

I was wondering what supplements you take. I too have fibromyalgia, arthritis (two kinds), and chronic fatigue. I also have most of the "subsets" of fibromyalgia, (restless leg syndrome, irritable bowel, etc.) Several years ago, I had ARDS or acute respiratory distress syndrome. Basically, I had respiratory failure. It began with a cold, and being a Mom, I just kept pushing myself until I was in ICU on a breathing machine. Anyway, it was a miracle that I lived. Since then I have been very aware (or paranoid as my kids say) of germs and do not want to catch anything. That is why I was wondering what supplements you took for your immune system.

Thanks so much,

 

 
Pill for fatigue
Posted by: tmboygrl
Sep 13, 2007
You may be thinking of the drug "Provigil" generic for "Modafin" It is a drug used for Narcolepsy,sleep apnea, and shift work sleep disorder. Since we all seem to have a "sleep disorder" this could help. I am also going to talk to my doc about it. Hope this is the one you were thinking about. If there is another please let me know. Provigil is NOT an Amphetamine. Good luck Sheri

 


doesn't fit my case
Posted by: applepansy
Sep 12, 2007
My FMS didn't first occur during a time of high stress. I believe that FMS can cause changes in the brain but I think it's a symptom and not the root cause. If mirapex can helps improve quality of life for some FMS patients that's great. . . I'll be surprised if it helps ALL fms patients. applepansy
Reply Reply

 
I think it's more complex, too . . .
Posted by: JaneAtFibroFollies
Sep 13, 2007
Applepansy, I think you're right. But I also think that that sort of fits the illness as a whole - there's so much individual variation in symptoms and experience.

In my case, it "feels" right - I had a hugely stressful experience prior to my diagnosis. However, I can't ignore the fact that I also had symptoms very similar to the fibro pain symptoms I have now when I was growing up. (I can't claim a completely stress free childhood but I don't consider it abnormally so. Then again, who's to say my physiology doesn't just react that way to stress of any level? Who's to say, in short, what's "abnormal"?)

I'm just happy to see any progress. Seriously.

 


FM related to other autoimmune diseases
Posted by: Katrinakilledme
Sep 12, 2007
I'm 42, had thyroid cancer at 19 (Hashimoto's), and have had chronic pain and all the syptoms of FM since. I was also diagnosed with mixed connective tissue disorder with lupus being the most prevelant, but not as bad as my FM, and I can tell the difference. I read that autoimmune diseases often come together. How does the dopamine theory of FM explain its autoimmune capacity as well as how dopamine affects the brain with mixed connectived tissue disorder?
Reply Reply

 
Dopamine changes are not the main cause either.
Posted by: jimbbb
Sep 12, 2007
K_By_me, My gut feeling is that Dopamine changes are only a side-related issue here. (To be fair tho, the researchers never said that Dopamine levels were THE cause for FM).

That said, if they do find a way to elevate the Dopamine levels at best it will probably end up being just another palliative treatment.

Unless they get to the root cause (CDW/L-form bacteria with affinity to nerve endings/brain tissue) then the treatment will not be a cure.

That's my story and i'm sticken to it.

jim

 


Dopamine and FMS
Posted by: SunflowerJRT
Sep 12, 2007
While I think it's great that researchers are looking for answers, I find it extremely difficult to watch countless numbers of family, friends and even strangers that are suffering with diagnosed and undiagnosed symptoms of CFIDS and FMS. I personally have had this dilemma trying numerous conventional and alternative treatments for my own case of CFIDS/FMS without any success until I found the Marshall Protocol at www.marshallprotocol.com in July 2004. I am now much improved although I'm not well yet and I do believe I still have a long way to go on my road to recovery but I am so much better than ever before and I believe the answer has already been revealed in Dr Marshall's groundbreaking work!
Reply Reply

Mirapex
Posted by: leann_sweeney
Sep 12, 2007
I'm not sure I buy this theory. I believe fibromyalgia is a pain disorder--yes a neurological problem--but I'm not sure dopamine--a very very strong drug--is the answer. I was prescribed Mirapex and of course it is EXPENSIVE. I was supposed to be on a graduated dosage but I vomited immediately after the first tiny dose and said, "not for me." Neurontin, on the other hand, has a generic and I was taking a small dose. But now that I am taking a higher dose--gradually increasing it--I am feeling relief for the first time in fifteen years. Neurontin for fibro (in a dosage of 1200mg-1800 mg) has been shown in studies to be as effective as Lyrica, the again oh-so EXPENSIVE and single FDA approved treatment for fibro. I think the drug companies have discovered a giant market of people desperate for relief. I say beware of articles like this suggesting expensive treatments like Mirapex. It may work for some, but so many people with fibro are disabled. They can't afford this!
Reply Reply

Stress and Fibromyalgia
Posted by: swifter
Sep 12, 2007
I am a 56 year old female with Fibromyalgia, Hypothyrodism, Restless Leg Syndrome, Irritable Bowel, and on a Gluten & MSG free diet, plus other physical problems. I am agreement with the argument on Fibromyalgia being Stress related. My father was abusive to my mother and they split up when I was two. She married a man when I was 5, who it turned out did not want me and I was afraid of. We moved in with her father just before I turned six. He was strict and I was scared of him for a long time, but he never came close to abusing me, he just never showed any affection. I came down with Rheumatic Fever during first grade and spent a whole summer in bed. I have always had a low self esteem and ended up pregnant and married when I was 16. I ended up being slugged in the jaw once and the eye three times, threatened with a gun more than once and finally left after seven years, scared to death he would kill me. My second husband never hit me just treated me horribly and took his anger out on my first child, when I figured it out I left with three children ages 1,2 and 11. I stayed single for over seven years, but had a boyfriend who out the clear blue one night, he was irritated over something he had done, slugged me in the jaw. When I was 35 I re-married and at 36 I ended up having TMJ and had a 15 hour jaw surgery. My mouth was wired shut, my medicines had alcohol in them, I got sick and lost 15 pounds in a week and a half, and had my first round with Restless Legs. During the first 3 years we were married, 30 relatives and friends died. During the years I have had problems with tiredness, muscle aches (growing pains), Asthma (stressed induced?), pnuemonia of various types, Bronchitis and other illnesses. It was not until I was rear-ended, while sitting in traffic, in 1999 that I was diagnosed with Post-Traumatic Fibromyalgia, and of course most doctors and people did not believe in it then. The doctor I have now is great and we went back through my history and have decided that I probably have had Fibro since I was slugged in the jaw the first time in 1969. This is just a short history of my life, but I truly believe my Fibro is Stress-related.
Reply Reply

 
SWIFTER YOUR COMMENTS WERE INCREDIBLE
Posted by: SKIKAT
Sep 15, 2007
swifter, i actually thought when i was reading your comments, that i had somehow gotten my story or part of it on this website without my knowledge. it is almost word for word what has happened to me (except there is lots more to my story). even the ages are the same , the rheumatic fever, the missing school, the husband with the gun and beatings, and etc. all of it almost could have been written by me. and in fact, my husband thought , when i read it to him, that i had written it! its incredible. i know that there is no way that we can exchange emails on here but this is one time that i wish with all of my heart that we could. i ahvent tried all of the things listed on here for myself, but am trying some as i am a newbie to an extent. jamminhealth and waynesrythym have been giving me some ideas and i am now starting to implement them. i need help so badly as i know many do but , even the morphine in the highest dosage and percocet is not helping much. i am on the board every night. it is my lifeline. i wish you great sucess in your journey and will pray for you often. hugs-ski-

ps. i meant to say that i am on the message board every night until sometimes 4 to 6 am.

 

 
help
Posted by: kell1209
Sep 17, 2007
Can you tell me what your doctors have done for you? I think I might have this as well.

 


Not so Sure...
Posted by: didders
Sep 12, 2007
I have severe FMS. Confirmed repeatedly. So why do any and all dopamine re-uptake inhibitors make me insane? I get the adjusting period is hard for many, but I never adapt. Just go nuts with weird ideation, hyperactivity, and anger - not me at all. This theory may be part of the answer but seriously doubt it's THE one.
Reply Reply

 
May work for some, but not me
Posted by: stillfighting
Sep 13, 2007
I've had similar experience to Didders with dopamine re-uptake inhibitors that were tried for RLS. Neurontin gave me such bad nightmares and hallucinations, I wound up giving the rest to my mother who is taking it for diabetic neuropathy. Mirapex was more insidious. It was very good at controlling RLS, but made me really foggy and anxious.

Someone made a comment about checking for specific body chemistry and tailoring treatment to that. I honestly think it will eventually come to that.

There's also the issue of how long a treatment helps. I was basically in remission for 8 years while performing an extremely intellectually challenging and sometimes stressful job due mostly to nortryptaline, followed by effexor. Now, the only things that seem to help at all are tramadol, klonopin, heating pad, yoga stretches, and moderate aerobic exercise. My memory and fatigue are so bad that I can't hold down a job.

If I thought there was a miracle drug that maintained effectiveness over time and didn't make me sicker, I would be the first in line to try it. But I don't think the dopamine re-uptake inhibitors are going to be a universal answer.

 

 
dopamine - more and more seem not so sure.
Posted by: gloriamiddleton
Sep 15, 2007
I had the same alertness as well- as i took it at night my sleep got worse instead of better and had to wait a full 6 mths before could come off it due to appt with specialist. My gp didn't know how to proceed with it so found a book called the Fibromyalgia cure by Dr Dryland (i think) and had read a lot of good things about dopamine. When i went back to my specialist (after mainly selfmedicating myself to get me to the 'optimum dose') , he said I had developed compulsive behaviour (on the computer!) as could not leave it alone , and said 'I've been waiting for this to happen' and he quoted the man with gambling compulsiveness behaviour. so i think i'm first compulsive behaviour person in uk! Don't want to scare anybody off it - in fact a friend who's mum has MS (sadly not FM), has reported a great response from the very first dose. but now back on Lyrica and sleep is consistent again. Also take GABA which is great and actually says on label it reduces the firing of receptors to the brain, and find it great to relax in eve.

 

 
going nuts too...
Posted by: pickleworks1
Sep 25, 2007
I take Cymbalta 120mg daily plus other Rx. I was abused at age 8 I have had a lot of stress during my life , The Dr. told me it started with a bad Auto Accident in 1985. and it's down hill since then. I lost 3years of my life ,or so it seems because I am not able to recall the things one should remember. I have lost my great attitude to life ,my sense for good business thinking I use to have patience for a lot of things and people but that only happens when I make a great and purposeful effort to hold it. I feel like I am crazy !! I want to run away, my faith in God and my little grand kids keep me here,for their love and gentle comforting feeling. In the world I am always fighting for everything to stay alive. the harder one tries the worse it gets.Touch me and I feel pain ,IBD problems. Weight gain,cannot concentrate on one thing at a time, never finish what I started out to do,cannot remember what happened yesterday unless I am reminded with specifics. I do not sleep at night without Ambien, I have severe sleep Apnea, (cpap machine) God knows do I need to go on... The theory sounds good but what else and which one is the answer we can just keep practicing until....

 

 
Not so Sure
Posted by: iluvmyputer2
Sep 13, 2007
Check out this website: "stopfibro.com" The WHITCOMB METHOD: Home of the Fibromyalgia Relief Center.

 

 
Dopamine and FMS
Posted by: cles77
Sep 14, 2007
Your Right!!! I have had bad experiences with dopamine re-uptake also. It made me so spaced out it scared me. My husband even said it gave me a weird spacy look and that I didn't look normal. Not for me either. I wonder about this theory also.

 


wellbutrin sr 150 mg twice daily
Posted by: hensue
Sep 14, 2007
This drug is dopamine related. It has saved my life. We have had to tweak and add other drugs for jitters. I have chronic fatigue and fibromyalgia all over horrible pain. Of course it is no cure. I still work but I have to rest, No more walking seems as if anything aerobic I do. I have a flare. So I dont work out or walk or swim as you know the day after or next you will be so fatigued and in pain. As the doctor said listen to your pain if it makes you hurt do not do it. Easy to say. This has helped me function and keep functioning, I have always thought it was some how dopamine related. I believe we are on the right road! Sounds very encouraging to me! Keep me posted Thanks Sue hensue@rose.net
Reply Reply

Mirapex; childhood sexual abuse as cause?
Posted by: annemargis
Sep 14, 2007
Mirapex has helped me more than any other treatment. I tried Neurontin for a year, and it didn't help at all. Lyrica didn't help either. I'd like to see a survey done on how many fibromyalgia sufferers were sexually abused as children. Seems like every sufferer I meet says yes.
Reply Reply

 
Mirapex; childhood sexual abuse as cause?
Posted by: anggieann
Sep 14, 2007
No. I was not sexually abused and I have been diagnosed with FM

 

 
cause of fibromyalgia
Posted by: buckeyegal46
Sep 19, 2007
100% of the fibro sufferers I have encountered have cited an injury or severe illness as the start of their severe symptoms. I have never encountered anyone who mentioned childhood sexual abuse, but then many people wouldn't a) want to discuss it or )b don't associate it with their FMS. If there is a connection, my guess is that it is the stress caused by the event rather than the event itself which triggers FMS symptoms.

 

 
FMS is not related to sexual abuse
Posted by: wenld
Sep 15, 2007
I have FMS & was never sexually abused & niether was my friend with FMS

 

 
no abuse here.
Posted by: mrlf613
Sep 24, 2007
I have had CFS/FM since I was 14 at least. I have never been abused. I did have a terrible case of mono when I was 10. I really never felt the same since that and battled with extreme fatigue for years before other symptoms surfaced.

 

 
Survey Were sexually abused?
Posted by: logos
Sep 18, 2007
Not me, but I have met one in my group.

 


Thanks to all!!!
Posted by: didders
Sep 15, 2007
Hi Kids - Cinda here...Fibromyalgia Network News also noted that our brains seem to age faster especially in the hippocampus (dopamine producing?) area. And the article - different doc - did mention fibros' lessened dopamine. Perhaps the dosages in meds like Wellbutrin are too high for us and that's the problem. There's slight dopamine re-uptake action in Cymbalta, which works great for me. I am deeply grateful for your response to my post because the real story comes from the people who have used these meds - not the drug companies or doctors getting golf trips for pushing them on us. Hugs to all! Cinda
Reply Reply

stress related fibro
Posted by: acheybreakybody
Sep 21, 2007
I can see a definite correlation between stress and fibro and also injuries/surgeries. What was described in the article, and how my brain started going on me when I was at work, fits me to a tee. I ended up quitting work, I couldn't handle it anymore. I worked in a bank. I noticed the higher my position got, the worse I felt. (Stress) I was not sexually abused. The people I know who have fibro were not abused either. But that is definitely a stessor. I have not tried any of these drugs mentioned.
Reply Reply

fibromyalgia
Posted by: maryellenthier
Oct 25, 2007
I am not experienced with the new treatment of mirapex,however,I was diagnosed at age 12 with rhumatoid arthritis.Although I never had the typical swelling of joints or crippling affects.I was diagnosed with FMS 2 years ago at age 49 after 7 or 8 years of complaining.I truly belive this is all stress related.I had a father who was an alcoholic,although I was never physically abused there was much stress in the household.I married at age 18 and stayed in that marriage for 22 years.This was an emotionally abusive marriage and also much stress finacially.The jobs I had,most recent was in a bank was very stressful and I became sicker and had a lot of concentration problems.Thankfully I was able to take time off and was confirmed by 7 Drs.that I was suffering from FMS and was put on disability.I have a terrific husband and family now who understands and it helps so much to have that when I am having a "down" time.I really belive that the RA I was diagnsed with as a child was FMS-which was not recognized 40 years ago.I think we are all different and need our personlized treatment plan - nothing works for some and something works for others.I also belive mild exercise and less sugar help very much.I was put on methadone at one point--I took one dose.That was definately not for me! I am on Xanex and ibuprophen.So far,I am dealing with really bad hip pain with darvocett and skelaxin as needed.Usually only 2-3 times a week.I would rather not take medication at all,but sometimes am glad it is available.I have lost 40 pounds this year and that seems to have helped quite a bit.Best wishes to all who are suffering.Never give up! I am thankful for this message board and hope to find some friends in the same position as I am.
Reply Reply

 
fibromyalgia
Posted by: leubie
Nov 15, 2007
hi- my name is laura------------i would like to apologize in advance------my typing skills are not the best!!!---anyways i read your letter w/ intrest---------i too have gone down the path of trying different meds.-------------------and many different diagnoses------------i hope you continue on your upwards path----------------ive only lost 25lbs-------------but trying to lose more-------------THANK-YOU FOR YOUR UPLIFTING LETTER--------TAKE CARE-------LOVE TO ALL---------LAURA

 



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