From Our Readers – Comments, Suggestions, Questions 03-18-09

Dopamine: The Elephant in the Room

Re: “Mounting Evidence of Dopamine Disorder in FM Warrants More Attention” by Drs. Holman & Wood, featured in the DVD “Fibromyalgia: Show me where it hurts”

This certainly makes sense to me, as I have been proposing the “Sensory Processing Pain Disorder” theory of chronic pain. Insufficient dopamine could be either the start of, or a symptom of, pain and/or fatigue. It seems almost obvious that at some point in the fibro patient’s life that dopamine would play a role. Personally, a family history of problems with dopamine-related dysfunction is a clue; Parkinson’s disease is primarily a dopamine-related disease, right? L-dopa is the first drug for PD patients. As for Sensory Processing, dopamine is a primary neurotransmitter, and where the processing of somatic [body] nerve signals takes place in the brain, something goes wrong and pain is created where it is not necessary, or it is too strong.

What I am wondering about is MUSCLE CRAMPS – does dopamine dysregulation sometimes produce muscle cramps? My calf muscles are twitching right now, and I had a near-total spasm in the underside of my right foot in the car today, where the toes curl under and the whole foot points down (it is very hard to drive like that!). We will continue to unravel this wretched Fibro stuff. – SP


Research Pursuing Genetic FM/CFS-Leukemia Link

Re: “National CFIDS Foundation Funds ‘Outside the Box’ Research”

I just finished reading the information regarding the possible link of CFS or FM with leukemia. This is very interesting to me as my paternal grandmother died of leukemia and my mother has had non-Hodgkin’s lymphoma for several years. With proof that there is, in fact, medical validation now that there is partially a genetic link to this creates much interest for me.

I have had CFS for five years and I have an older sister who developed FM last year. We are both in our mid-late fifties. Continued prayer for additional funding for research to possibly find a cause and cure is outstanding. Kudos to those who are dilligently fighting on our behalf. – Brenda


Fibro Patients, Beware Flouride in Many Meds

Four percent of the population is allergic to some form of fluoride (there are different forms). Fluoride is found in the quinolone antibiotics. No one with Fibro should be taking these because they can cause tendon tearing. Fibro can weaken our tendons.

Fluoride is found in many anesthetic medications as it helps the meds cross the blood/brain barrier and ensures quicker delivery. I talked to my anesthetist when I had my knee surgery and he and the nurse made sure none of the meds contained fluoride. That was the first surgery I woke from feeling great. My daughter couldn’t believe it.

Fluorescene is used in eye exams. It is usually yellow eye drops. My Mom and I always felt sick after having our eyes examined. Mystery solved! – M


EEO Award – Fibromyalgia and How We Are Seen

Re: “Bay Area FM Patient Required to Work Overtime Awarded $75K”

And so it continues. We will be seen as a problem just as other disabilities are seen as a problem in the workplace. Employers will continue to look for ways to dismiss us so that they can hire employees who will give 150% and work overtime for nothing. You find yourself saying “I’m fine” when someone asks how you are feeling, because you are afraid of losing your job if you say anything about how you are really feeling. I commend this person for fighting for their rights. No one should have to work overtime or give more than 100% of themselves in any job. – D


Cholesterol Lowering Drugs Reduce CoQ10, Can Create Problems

Q: You might want to investigate something I read recently in a “Dr. Gott” column – a syndicated daily doctor advice column in our local paper. That is that [the cholesterol-lowering ‘statin’ drug] Lipitor reduces the amount of Coenzyme Q10 in your body. I can’t remember whether it is all statins or just Lipitor; I take Lipitor, therefore, I remembered that. [I wonder if supplemental] CoQ10 could rebalance the CoQ10 levels of people who are on L or statins? – Billie

A: We Googled for this & pulled up the following from the daily “Ask Dr. Gott” feature in the Monterey County Herald (

Dear Dr. Gott: I am a physician in California. I thought you would like to know a little about statin therapy and Coenzyme Q10. According to a publication in the Archives of Neurology,* atorvastatin (Lipitor) has been shown to significantly decrease CoQ10 by about 50 percent in one month. This depletion may lead to exercise intolerance and muscle pain and inflammation. I, personally, have had many patients better tolerate statins when given coenzyme Q10 as well. Please pass this on to your readers and other physicians.”

Dear Reader: Thank you for informing me of this finding. I have received a few sporadic letters regarding administration of CoQ10 with statins. Yours was one of the only ones that included a reference. Given this information, I must now recommend that people taking statins talk to their physicians about the possibility of adding the enzyme supplement, especially if they are experiencing aching muscles and joints. I must also point out that if these symptoms continue to worsen or do not respond to the additional CoQ10, then it is time to consider nonstatin cholesterol reducers.”

* See “Atorvastatin decreases the Coenzyme Q10 level in the Blood of patients at risk for cardiovascular disease and stroke,” by neurology researchers Rundek T, et al. at Columbia University.


Believes FM Drug Ad Does More Harm than Good

I just saw a commercial for Lyrica® that I have never seen before. There was the usual blah blah stuff about muscle pain. The woman was obviously doing some job she enjoyed and said “I am not the kind of person to lie down and quit” – and then started talking about Lyrica.

The message here seems to be – if you are not doing well, can’t work, can’t do the things you enjoy and DON’T take Lyrica, then you are lying down and quitting.

This commercial is doing more harm than good. I know people who believe that Lyrica is the “cure” for FM; now it’s going to be “you obviously don’t want to get better if you don’t take Lyrica.” Grrrr. – KJM


More on Grape Seed Extract & Edema

For years I have had unexplained severe edema in my feet and ankles, but since someone on the [Fibromyalgia Message Board] told me about grape seed [extract], I have been experiencing way less swelling. So I say to any of you with edema, try it and I hope it works for you too. And thanks to you that shared this info. You are truly a blessing. – PB


Could Bariatric Surgery Affect Drug Absorption?

Q: I am 2 years post bariatric surgery and doing excellent in that area. I also have fibromyalgia, degenerative disk disease, and osteoarthritis and RLS. I am near needing more diskectomies and fusions…much pain.

My question is: Anyone else in this similar boat where they cannot get any relief by taking NORCO® [prescription pain drug] unless it is at continuous high doses (i.e., 6-10/325 caps a day)? I’m dying, stressed out from the pain, and sick of taking drugs. – DM

A: Thanks to our patient expert on chronic pain, Karen Lee Richards, we found some info that may help. Bypassing a large portion of the stomach & small intestine puts bariatric surgery patients at risk for malabsorption of some medications and nutrients, so that changes in the drug delivery route and supplementation are important considerations, according to Medscape consulting pharmacist Brigette Nelson, MS, PharmD, BCNP. To link to the detailed Medscape Q&A on this subject, click here.


Filing for SSDI?

If you need information on filing for SSDI, check out ( – a good informative website. – A


Is There a Major Cause of “Flesh-Eating” Infection?

Q: Exactly where or what place is the major cause of getting the flesh eating bacterial infection known as necrotizing fasciitis (NF)? I am currently recovering from it and do not know much or have been given much info about this infection that nearly killed me. Can you help me with some info?

A: Based on our Internet search, questions remain about NF. Cases are definitely rare – and they’re most often caused by a common form of strep bacteria (Streptococcus pyogenes), which is best known as a cause of strep throat and scarlet fever. When S pyogenes is able to get a foothold in parts of the body where bacteria aren’t usually found (in the tissues & blood), it produces a compound that inactivates an immune system molecule responsible for controlling the white blood cells’ ability to fight bacteria. With these cells weakened, infection can spread out of control with alarming speed.

In NF, S pyogenes normally enters through a break in the skin – such as a cut, scrape, surgical incision, rash, bug bite, or especially chickenpox, etc. Many people who develop NF have been in good health, though immune problems or use of steroid medicines may lower resistance. The infection starts in the tissue just below the skin and spreads very quickly along the flat layers of tissue (fascia) that separate different layers of soft tissue, including muscle and fat. It’s much more painful than the initial wound would typically indicate, and represents an emergency that must be seen and treated immediately (with full spectrum antibiotics, often aggressive removal of affected tissues). It is fatal in 30% to 40% of cases.

NF is not new. It was recorded in ancient Roman times and was common among soldiers in the Civil War.

How is the infection passed on? Again, it is rare and no common source has been identified. People who have strep throat do not usually develop NF. It could be passed on from someone who has no ill effects but is “carrying” it, in their throat or on their skin – via contact sports, improperly cleaned hands, or shared equipment, for example. Or it may be passed on via mucous on objects used by someone with a strep throat involving S pyogenes. People who’ve been in contact with NF patients are given antibiotics as a precaution.
Note: This information has not been evaluated by the FDA. It is generic and anecdotal, and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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8 thoughts on “From Our Readers – Comments, Suggestions, Questions 03-18-09”

  1. shaybird says:


  2. neenie1 says:

    I agree with the other posters! I also hate the ad, and it does imply that there’s a cure, or choice, and that taking a pill is the solution. I take plenty of meds to deal with my various problems, but not Lyrica. I just started Cymbalta, and noticed almost immediately a decrease in pain! It also has straightened my gut out, which was on a real roller coaster ride for ’09. Whether I stay on it or not, reamains to be seen, but I also hate the Lyrica ad……….and I don’t think the Cymbalta ad is much better, but it isn’t so judgmental.

  3. starstella says:

    I have two reactions to the Lyrica ads.
    First, they have done a lot to increase public awareness of fibro. That is the only positive thing I have to say. On the negative side, I am so tired of everyone I know who is aware of my fibro problem telling me that if I took Lyrica, it would help. They believe what they hear in the advertisement, and indicate that I am remiss in not trying it. It makes me want to scream. I grit my teeth and explain that my MD is not one to jump on the bandwagon and start me on a drug that has not proven itself well enough in the medical literature.
    The Lyrica ads just promote the idea that there is a magic bullet to deal with fibro, and the bullet’s name is “Lyrica”.

  4. pearls says:

    I don’t like any advertisements of prescription drugs directly to the public, and I don’t care for the Lyrica ad, either. However, Lyrica has helped me a lot. I had a huge decrease in my pain almost immediately. In addition, as long as I maintain good sleep hygiene and take my sleep meds, Lyrica has made a huge difference in my sleep. On the other hand, I do worry about possible long-term effects there might be, the same as with my other meds.

  5. kat3331 says:

    well, the doctor who was responsible for 21 different studies on using lyrica and other drugs in tandem for different kinds of pain relief, i.e. post surgery, etc.,
    (not fm) has been accused of lying about all of his research !! whoa !!! he is in aesthesiology and
    his whole careet is now shot. i wonder if this will affect the fm use of lyrica? oh yeah, he is Scott S. Reuben, MD, of Baystate Medical Center in Springfield, Mass. what was the man thinking of?

    kathy in texarkana texas

  6. smeyers says:

    Everytime I see the Lyrica ad I want to yell: it doesn’t work!!!!! I’ve tried Lyrica and also Cymbalta – waiting months for them to be approved by the FDA before my doc would prescribe them – only to find that not only do they not do anything for the pain, they made me very irritable and, in the case of Cymbalta, nearly suicidally depressed!

    I’m back on my Prozak and I’m not going to be so anxious to try any of these “miracle drugs” again!

    Susan Meyers
    Macedon, New York

  7. fibrobutterfly says:

    The people in the lyrica ads all seem to live a regular normal life, traveling, shopping , gardening and working. I have lived with fibro for over 30 plus yrs and believe me it is no normal life if you have fibro.

    I take lyrica and it does not help much at all, and am trying slowly to go off it. My rheumatologist swears it helps 90% of his patients lead a normal life. I find that hard to believe and lost alot of trust in him when he said that.

    I also wonder what all these meds are doing to us longterm.


  8. LKCasey57 says:

    I just recently read some of these notes and I agree.
    Those ads are awful and that woman who is doing them makes us all seem like we REALLY ARE NOT IN PAIN. It was a slap in the face in my opinion. I had heard about Lyrica and was thinking about asking my MD but not after seeing those very badly made ads. How sad.

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