i have fibro, and lyrica helps. i used to take neurontin for it (lyrica is a compound or derivative of neurontin, can't remember exactly), but the nuerontin didn't help me. for some reason, the lyrica does.

i was to the point that i couldn't lift a shirt off over my head, my arm movement was so limited. i was in a great deal of pain, and lyrica kicked it's ass.

I think the symptoms people experience with fibromyalgia are real but I sure would like to know if this is really an iatrogenic illness. Sometimes I think the reason Cymbalta and their ilk work is because they are really treating the drug withdrawal and dependency that created the syndrome in the first place. I think these are immune function disorders that are created by toxins in the environment and not just psych drugs although I'm betting they are a big piece of it. Anyway this is all just my gut hypothesis but I put it out there as one possibility. And I don't think drugs like Cymbalta or Lyrica are a long term solution to the illness in any way shape or form. In fact, I'm pretty sure, just as in bipolar treatment, they're going to make things worse in the long term not better.

I'm with you Sara...I have a friend who took Cymbalta about 2 years ago now for fibro...she did feel better in terms of the pain, but she had to come off due to other adverse events and the ensuing withdrawal was horrendous and she feels she is worse off as a result of it...

This is someone I met on vacation randomly and we just got to talking...not an internet connection.

I think they can make things worse...

My symptoms are much like these and they were caused by the drugs...yup iatrogenesis...

In the brief time reading this blog, this is the most level-headed report you have ever written.

Philip Dawdy responds: well, thanks. :)

Fibromyalgia, chronic fatigue syndrome, post-tramatic stress disorder, and even depression have similar symptoms. Neuropathic pain (with its many names... i.e. allyodynia, complex regional pain syndrome, hyeralgesia, paraesthesia, dysethesias, mirror-imaging pain, pathological pain, phantom-limb pain, ect...) also shares many features with fibromyalgia.

Research at the University of Colorado in Boulder has shown that there are a couple of physical breaks in the peripheral nervous system as well as the central nervous system of rats that have been modeled (or induced) to experience neuropathies. The researchers have found a method to reverse the chemical cascade in the spinal cord that is maintaining the neuropathic pain of neuropathies. They have developed a medication that is currently in clinical trials. The next step is to educate doctors of the new neuropathic pain model that these researchers have been able to derive from their studies that have been conducted for about 7 years now. This research has shown possible relationships to Gullian-Barre syndrome and even autistic disorders are being looked at as having a possible connection. Some neuropathic problems can cause brain tumors (most are benign, but a tumor in the brain is a big problem benign or not).

Fibromyalgia is becoming a "trashcan" diagnoses that is catching everyone that has pain that physicians don't know what to do with. As patients, we desire better, and the classification of pain needs to be taken more seriously, because we are the "revolving door" patients that are costing the medical system an ungodly amount of money. In the process of being revolved through that door we are not getting adequate care, our medical records are leading many people to a place of being "uninsurable", we are paying physicians that are ignoring the science and research that can help us, and the clock just keeps ticking.

So big drug companies get big grants, research teams get much smaller grants, understanding still evades us, and the patient in pain is blamed for needing help, oppressed because they are sick, and can't seem to find an advocate in their darkest hours. People dare to say to these patients that they need to become educated.

I have been experiencing neuropathies since my earliest childhood (infancy). I am 38 years old. I have been diagnosed with Complex Regional Pain Syndrome (formally known as RSD), Fibromyalgia, mirror-image pain (where an abdominal organ ruptured and the pain was experienced on the opposite side of my body... doctors called it a "phenomenon" and then called me a hypochondriac when the pain lingered for about a year after the rupture), allodynia, hyperalgesia, depression (which I have never experienced... I am too hard-headed to be depressed :o), and somehow I currently hold no diagnoses. The reason is because I found my joy, and learned natural techniques to tolerate the daily pain and stayed out of the medical system for about five years.

I was told I needed to educate myself on fibromyalgia and neuropathies, so at age 34 I enrolled in college after attempting to learn on my own for about 2-3 years. I am now a Senior in an Bachelor of Science Interdisciplinary Studies program where my primary focus is on Psychology and my secondary focus is on Biology. I first went to Greenville Technical College in Greenville, SC where I obtained an Associate of Science with Honors with a 3.53 GPA. I was bestowed the honor of being accepted to the Neuroscience program at Furman University in Greenville, SC (an "Ivy League" college). At Greenville Technical College I was able to manage my health, my life, and my academics without being pushed into sickness. At Furman University I was becoming sick within the first semester. During the second semester I was required (as all students at Furman are required to do) to enroll in a general education course called Health and Wellness Concepts. This course was basically a gym class. Once I began exercise (even minor exercise like walking a mile and just being in the gym with the noises of the weights and various machines) caused me to begin my old familiar inflammation patterns. I typically get a sore throat, then my lungs become inflamed, then my abdominal wall gets inflamed, then my hands and feet get arthritis-like inflammation, then my legs and arms hurt from my elbows and knees down, then my neck get stiff, then my spinal cord feels like it is on fire, and finally the back of my head swells (and I begin to stumble, slur in my speech, I can't think coherently, I am so weak I can barely move my limbs, and I eat enough to feed 2 grown men... even though I only weight 115 lbs and never gain an ounce). So I went to my professor, Deb Bucci, and to Disability Services to get an exemption from the physical portion of this course. I gave them my medical records that were about 5 years old, and I was told that I would be required to get a "Doctor's note" stating that I should not exercise, and that my chronic condition was not going to be considered because my medical records were too old (had they been 4 years old they would have been accepted, but at 5 years old they were thrown out). I went to the doctor, and had the usual treatment of "no treatment" and even had one doctor say to me, "It is flu season. I only have 5 minutes per patient. What do you want"? I dared to be honest with my professor and Disability Services about this experience when I presented the "Doctor's note" that this man gave me on Jan 30, 2008. Furman University continued to deny me the exemption of the physical portion (not the academic portion) of this course until May of 2008. I was subjected to having to negotiate this problem with several different people for all that time while being sick, being a non-traditional student with a house to clean, twin boys at home, single, working, and a full-time student. In May, Deb Bucci denied that I ever even asked for the accommodation. I was dead on my face by the time the accommodation was finally given, but what did my professor do? She decided that I should be punished for my actions of contacting the Dean of Academic Affairs and President, David Shi (both of whom protected the department and the professor and ignored my pleas for an unbiased review and for help from their offices). Deb Bucci awarded me a C in the course when I had earned a B+ on work that was clearly academic in nature. Tom Kazee and David Shi ignored my appeal of the grade, and tried to force me into yet another system of appeals steeped in bureaucracy. The lesson that sticks out most for me at Furman University, is that I need to learn how to lie better to be able to maneuver bureaucratical systems like their's. This caused me to transfer to USC Upstate, where I am doing very well academically, and my health is beginning to get back in balance. At Furman University I lost a year of my life, I paid money I did not have to doctors that abused me, I lost about $7,000.00 in student loans, I lost my deferment time on my student loans (due to having to withdraw from two classes from illness), I lost the money I paid to move close to that college, and then I had to pay to move to Spartanburg only a year later (sick, exhausted, and broke!) NOT TO MENTION, my GPA was trashed by biased grading at Furman, my ability to apply to graduate schools has been hindered, and my ability to apply for research fellowships and internships have also been hindered. Fibromyalgia and neuropathic pain patients are facing situations like mine everyday in colleges, work places, and even at home where their families do not understand their health needs.

People should not have to obtain a 4-year or higher degree just to be able to understand and communicate with their physicians, but I have had to. How are people who are not educated in the medical terminology that is involved with neuropathic, immune, and rheumatic disorders supposed to "educate" themselves when the language has purposely been filled with idiomatic terms so that the science can be protected from being spoofed (research being done by another source, such as a layperson, before the scientist can come up with a result that can be published). Pain patients are getting the short end of this stick. We do need to be educated! We need to be educated, not medicated!!!! Many people are being harmed by the medications they are taking at such large doses and in so many combinations. There is no research to show that these practices are safe, and the pain patient is the guinea pig. In 10, 15, even 20 years when these patients begin dying their medical records will be so filled with non-sense so that no one will be blamed, and the patient will be dead, never helped, and leaving behind loved ones who are none-the-wiser. WAKE UP PAIN PATIENTS! Your life is at risk in our current medical, political, academic, and economic system.

It continues to amaze that in these reports, they rarely mention the actual statistics of how many people felt better and by how much. Rather the journalists just give us vague reports like "Anti-depressants are shown to effectively treat Fibromyalgia."

They don't tell you that only about 25% (or 367) of the 1,471 people studied had pain reduction of at least 30%. And that, it was the tri-cyclics that had the biggest effect, while the SSRIs had only a "small positive effect."



One doctor at UNC, Nortin Hadler is quoted on WebMD speaking of the Fibromyalgia/Anti-Depressant studies:


"In the studies [on fibromyalgia] the patients who responded to treatment did not get that much better. There is nothing dramatic going on with these drugs except their side effects and their price."

Dear Zachary Taylor...

You are so correct! You will find that articles in scientific magazines are simply reviews of the research conducted. To be able to access the actual journal publications, you have to first locate them. That is no easy task! But to start with, here are a few journals that publish pain research... The Journal of Pain, Pain, Journal of Neuroscience, The Brain, and there are literally hundreds if not thousands of them. Some libraries subscribe to these journals, but free resources are not easy to find.

A good source to do a search of many of the journals collectively is www.pubmed.com , but they only publish the abstract. You have to purchase each article or subscribe to the journal to see the full publication. Even a layperson can learn to read research articles. They are difficult to understand at first because of the medical terminology, but as you learn the language, it becomes easier and easier to understand the research that is being conducted, how it is being conducted, and even how valid the results are.

I wish all my fellow pain patients the very best, and desire to have them all highly educated in these areas of understanding, because ignorance is not bliss when it comes to pain. They say that millions are being spent to eductae the public about chronic pain every year. I ask you all, did you learn anything significant last year, or the year before, or even the year before that about chronic pain? The money being spent to "educate the public" is not a good education, because patients still do not know the language, they do not have free access to research articles, and they are not given guidance to locate the research that is related to their specific disorder. THAT WOULD MONEY WELL SPENT TO EDUCATE THE PUBLIC!!!

I was incorrect on the URL I shared with you. The correct URL is www.pubmed.gov

Pubmed: "You have to purchase each article or subscribe to the journal to see the full publication."

Or, you go to a library.

While the majority of fibro patients do have some real physical problem, it is probably one of at least half a dozen different problems. There are also those simply suffering from depression and a spiral of problems from insomnia, inactivity and other curses it brings.

The scary thing -- something I can confirm from working with workers' comp claimants -- is that for too many, things get worse not better after they get the magic diagnosis. A sobering snip from Alex Berenson's NYT article last year:

"The diagnosis of fibromyalgia itself worsens the condition by encouraging people to think of themselves as sick and catalog their pain, said Dr. Nortin Hadler, a rheumatologist and professor of medicine at the University of North Carolina who has written extensively about fibromyalgia. “These people live under a cloud,” he said. “And the more they seem to be around the medical establishment, the sicker they get.”

Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.

“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”

I hate it when people blame depression and inactivity for "fibromyalgia". I'm not sure if I believe it is a valid diagnosis, but my symptoms sure point to something.
Yes, I am depressed, and have been my whole life. I also have PTSD.
But I went from being a cyclist riding 100+ miles/week and lifting 90 minutes 2x/week as well as teaching yoga to wondering if I should get adult diapers because it hurt too much to get up to go to the bathroom. I went from one to the other in two days. There are many cases of "fibro" that hit athletes.
I miss exercise, being active. I would give anything to be able to do that again, but my doctors are unwilling to provide any pain management until exercise becomes beneficial and I'm able to have some quality of life and don't need the medication anymore. Apparently temporary relief while I make lifestyle changes is too much to ask for.

angry and hurting, so what is your treatment for depression, PTSD and fibro if your doctors are unwilling to provide pain management? Were you being treated for your psych problems when fibro struck? How do the doctors expect you to get to a place where you won't need medication anymore I wonder? Are they touting your current treatment as "healing?" Anyway just giving you an example of what springs to mind as I read your comment.

Dear angry-&-hurting: Yikes. Athlete to invalid in **two days**? I am no doctor but that sounds like it must have involved a virus, drug reaction or other sudden event. That's one of the main problems with this "fibro" campaign: people with a huge variety of complex disorders causing muscle or joint pain get lumped into this diagnosis because it's easier for the doctors and profitable for the drug cos. They may have no more in common with each other than people trapped in the same airport in a storm.

Given the circumstances, I am sure you're sick of being told this is somehow all psychological. I didn't mean to imply that. One of the charms of having a psych diagnosis, the joke goes, is that you will never again have a physical disease. Even if your left foot is black and blue, the doctor will tell you it's depression...

Best of luck.

I wasn't on any medication besides the occasional ativan, maybe an advil if I overdid it. I was in therapy, but a bunch of antidepressants and they just made things worse, so no more of those.
It started with a #10 headache that came on when I was laughing, and progressed from there. The ER originally suspected a brain bleed. I've also been tested for rheumatoid arthritis, lyme disease, gout, MS, brain malformations/tumors and a bunch of other things I don't remember anymore. I had to fight for those tests, as after the Dx is there, they just stop trying. The only prior was a bout of hip bursitis that knocked me on my ass for a few weeks.
The docs aren't doing any "healing", they're just prescribing more and more meds to try to help with the symptoms. High doses of Ibuprofen, a beta blocker for headaches, a muscle relaxer, limited amounts of tramadol which is slightly helpful, but definitely not enough. Tried trigger point injections and that made things worse. My only psych med is klonopin.
I'm in the rut of being inactive to the point of not being able to buy groceries (the motorized carts help, but not with unloading and putting them away) or having the energy to cook, so I'm also eating junk, which is also making things worse.
I do have days that are better, but December through April I cycle from feeling mostly crappy to completely useless. I've lost probably 3/4 or more of the 4 years I've been dealing with this.
Thanks for listening to my rants. It helps.

A "bunch of antidepressants?" Well even if you weren't on those right at the time of the attack that sure looks like it might have had something to do with it in my book, especially if you were stopping and starting a whole variety of them. Do you have any idea how long the after effects of these meds last? Try months if not years. It's certainly not days or weeks. And Klonopin?! You better head on over to the Beyond Meds blog (www.bipolarblast.wordpress.com) and start reading. Sorry but this is serious stuff. Benzos (of which Klonopin and Ativan are two) are notorious for causing this type of debilitating symptom. I'm sorry you're suffering like this but get yourself off the meds (slowly) and on to some nutrient food.

Just wondering if you reccommend a M.D. in Greenville? I am recently diagnosed and in the minute or two my Rhuematoligist spent with me it didn't even seem that he believed in Fibro.