Healing from Fibromyalgia Step 2: Finding the Right Pain Medication

The often long and arduous journey towards receiving a fibromyalgia diagnosis is, unfortunately, just one step in the direction towards restored health. After I received my diagnosis of fibromyalgia, I was elated and felt a great sense of relief. Finally! Now the doctors would be able to give me some sort of prescription or treatment plan than would catapult me back to health. Oh how I wish I could go back in time and warn my young, naive self - the self who still believed in the omniscience of doctors - that there was still a long way to go. Upon receiving a diagnosis with fibromyalgia, I soon found out that there is no treatment plan, and that the main way most physicians treat the syndrome is through prescription pain medication. Althought, as with all fibromyalgia treatments, finding the right pain medication was trial and error. And boy, did I have to try A LOT of prescriptions before I found the one that worked for me.

From the onset of my illness in 2009, I immediately began receiving prescriptions for pain relief, and it took me two years until I found THE medication for me. Luckily, all of that painful trial and error was worth it; however, I do not wish that long of a wait on anyone. Finding the right medication to relieve pain is a crucial step in recovery. Until I received the proper pain medication, I felt as though I were waiting to die. I had no hope, no specific treatment plan to follow, and lived in continuous, excruciating pain. When I finally found that one, specific prescription to help ease my pain, I felt as though my life were back on track. Within a few weeks I was able to get up and move around. And as the pain faded, hope returned. Pain medication can be the key is restoring a sense of control and mobility in life. With the decrease in pain, I was then able to start forming a plan to treat the overall health of my body. I was able to get up, move around, and begin working towards regaining strength and stamina.

So, how do you find the right medication for you? 

Currently, there are three FDA-approved medications for the treatment of fibromyalgia pain.; Lyrica, Cymbalta, and Savella. Lyrica (Pfizer Inc) was the first medication to recive FDA-approval in June of 2007. Originally, "approved to treat seizures, as well as pain from damaged nerves that can happen in people with diabetes (diabetic peripheral neuropathy) and in those who develop pain following the rash of shingles," Lyrica was found to also be effective in decreasing the level of wide-spread pain in fibromyalgia patients. Now a popular drug, often seen in television commercials, Lyrica was the beginning of FDA-approved drugs which had positive responses in some fibromyalgia patients.

The next drug to be approved by the FDA was Cymbalta, which received it's approval one year later in June of 2008.  Like Lyrica, Cymbalta was not originally created to treat fibromyaliga patients. The original use of Cymbalta was to aide those who suffered from depression, anxiety, or diabetic peripheral neuropathy. Cymalta works to boost the brain chemicals serotonin and norepenepherine. "Serotonin and norepinephrine work together in the brain and spinal cord to tone down pain-related messages" *  Increasing serotonin and norepenephrine aide the body's ability to fight pain.

Similar to Cymbalta, Savella also works as a serotonin and norephenephrine booster. Savella was the first drug whose original purpose was created to help fight the pain of fibromyalgia patients. Recieving FDA-approval in 2009, Savella acts similar to those drugs used to treat depression and anxiety, but is not prescribed as such.

Each one of these FDA-approved drugs has the possibility of helping fibromyalgia patients, but they also have negative side effects. Typical side effects include:

1. Lyrica: "sleepiness, dizziness, blurry vision, weight gain, trouble concentrating, swelling of the hands and feet, and dry mouth. Allergic reactions, although rare, can occur."*
2. Cymbalta: "side effects include nausea, dry mouth, sleepiness, constipation, decreased appetite, and increased sweating ... Like some other antidepressants, Cymbalta may increase the risk of suicidal thinking and behavior in people who take the drug for depression" *
3. Savella: " Side effects include nausea, constipation, dizziness, insomnia, excessive sweating, vomiting, palpitations or increased heart rate, dry mouth and high blood pressure" *

Although Lyrica, Cymbalta, and Savella are the only three prescriptions that have received FDA-approval for the treatment of fibromyalgia, there are many other prescriptions which have also been helpful in fibromyalgia patients. Muscle relaxants such as Xanaflex or Flexeri may be prescribed, as well as other serotonin boosters like Prozac, Lexapro, and Zoloft. In my experience with prescritption medications, serotonin boosters were unhelpful and created the most uncomfortable side effects of all those I had tried. Unlike Cymbalta or Savella (which boost BOTH serotonin and norepenepherine) prescriptions like Prozac only boost serotonin levels, which may increase energy - but does not decrease pain.

Overall,finding the correct pain medication is as hard of a journey as was getting a diagnosis. Often the medications will give you adverse reactions and side effects, and you will have to go through many until you find that one pill which gives you none. For me, it took two years, but I am hoping that for others their wait will be much less. Finding the tools to decrease wide spread pain is a fundamental building block towards rebuilding your body to total health.

This blog was sourced from the FDA website and the Fibromyaliga Network. If you would like to read their articles or look for further information, please follow the links below

1. FDA
2. Fibromyalgia Network

 Until Next Time,
Feast From Within

Healing from Fibromyalgia: Step 1 - Getting a Diagnosis

What is Fibromyalgia? To those who do not suffer from this curious illness, understanding its symptoms, treatments, and effects on a person's life can be very difficult. Debate within the medical community still persists as to the existence of fibromyalgia as an actual disease or condition. Characterized by widespread pain, unbearable fatigue, cognitive impairment (brain fog), and poor sleep, fibromyalgia is often considered the 'wastebasket' disease of the medical community. Considering that fibromyalgia can not be diagnosed using any form of medical testing (blood test, X Ray, etc) many doctors use the diagnosis of fibromyalgia as a catch-all for an explanation of their patient's symptoms. But to those of us who truly suffer from the debilitating syndrome, actually getting a proper diagnosis is incredibly difficult.

As previously stated, fibromyalgia can not be diagnosed through any sort of medical testing. In fact, the current way to diagnose fibromyalgia is through an arbitrary 'tender point test' along side a patient survey. In order to receive the diagnosis of 'fibromyalgia', a patient must respond to 11 of the 18 tender points in all four quadrants of the body (left/right, top/bottom). These 18 tender points are depicted in the graph below:

 

The tender point test and criteria for diagnosis was created in  1990 by the American College of Rheumatology, and, sadly, is still in use today. * There are many problems in the use of this test as the primary means of diagnosis. First of all, in order to meet the diagnosis of fibromyalgia, a patient must have had persistent wide spread pain symptoms for a minimum of three months. * Meaning, one must suffer and live in agonizing, full - body pain for MONTHS before a doctor will even consider to give a diagnosis of fibromyalgia. Not only must one suffer through months of pain, they must also suffer through months of randomized testing in order to rule out any other possible illness or disease which shares similar symptoms. If anyone has lived with fibromyalgia or chronic widespread pain, they may understand the extent of suffering and hopelessness that one faces while being shuffled from doctor to doctor, going through a wide array of tests, only to continue waiting for any information that may provide an explanation as to why they are in so much pain.

Not only is the tender point test subjective, but is it highly unpredictable depending on the severity of the symptoms and the competence of the doctor. Symptoms of fibromyalgia vary from day to day; therefore, multiple tender points may not register on one day, but be very evident on the next. When I was diagnosed with fibromyalgia in 2010, I was experiencing so much widespread pain that I could not differentiate between the pain I felt in the 'tender points' vs the pain I was feeling through out the rest of my body. To me, everything was painful, and the act of applying pressure to one specific area made no difference to the pain I was already experiencing. 

Since the tender point test is unpredictable and subjective, in 2010 "a group of rheumatologists acting on behalf of the American College of Rheumatology (ACR) published new preliminary criteria on how doctors should diagnose fibromyalgia." * This preliminary criteria includes a patient survey, or 'symptom checklist', that acts as a backup to the tender point test. The symptom checklist is just as subjective as the tender point test. The idea behind the symptom survey, I'm assuming, is to provide further validation to the diagnosis of a patient with fibromyalia. As a person who has completed both tests and lives with fibromyalgia, I (obviously) find both to be extremely faulty and possibly ineffective in providing suffering people with proper medical care. However, until fibromyalgia can be diagnosed through a more effective test, like a blood test, patients suffering from chronic pain are forced to live with a flawed system. 

Unfortunately, in order to begin healing from symptoms of fibromyalgia, one needs a diagnosis. Receiving a diagnosis provides patients with some sense of understanding and allows each person to begin taking steps toward finding treatments. Armed with a diagnosis, any patient with fibromyalgia can now venture to arm themselves with knowledge of their condition and begin to regain a sense of hope for improved health. 

If you or someone you know is experiencing symptoms of fibromyalgia, consider consulting a rheumatologist. Most cases of fibromyalgia are diagnosed under the umbrella of being a rheumatic syndrome, therefore many of the most knowledgeable doctors of fibromyalgia are found in the rheumatology department.

An example of the symptom survey can be found at the link below:
 http://www.surveymonkey.com/s/HXZYTBM

Until Next Time,
Feast From Within



Further information regarding diagnosing fibromyalgia:

1. http://www.fmnetnews.com/fibro-basics/diagnosis
2. http://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia-symptoms/art-20045401?pg=1

What happens when the medical system fails

As I write this blog post I am , yet again, preparing myself to embark on a journey with another doctor. Many of those living with a chronic illness can understand this journey far too well. Moving from doctor to doctor in desperate search for a cure, we are continually faced with the harsh realities of our medical system. I can only write from the perspective of an American who has to deal with the American medical system, but I am sure that many of the hardships I have faced in search of treatments are transferable across nations.

Growing up in America, I viewed doctors as saviors, people who knew all the answers and were able to cure any disease. The only illnesses I ever thought of as 'incurable' were illnesses like cancer and HIV, boy was my world about to be rocked. When I first became ill in 2009, my symptoms looked like those of just a common virus. Typical aches, pains, nausea, fatigue, etc. The usual blood tests were drawn and I was cleared by my primary care doctor for mono or any other 'common' viral illness. Leaving the doctor's office I was sure that with rest and fluids I would be back to normal in a week or two, the truth is much different. As weeks passed, my symptoms persisted and continued to get worse. My glands began to swell up to the size of a golf ball and the fatigue became unbearable. At this time I was still attempting to struggle through my college classes, but I knew something was wrong. Once again I went back to the doctor to get more blood tests, but still the same diagnosis. No mono, no serious viral illness, and I would be better in two weeks. Somehow, even with my glands swollen to the size of golf balls, doctors were turning me away - telling me I was going to be fine, and dismissing any or all of my concerns.

Months went by, my glands didn't go down, and my tonsils were 3x the size of normal. I kept thinking that as long as I rested and got enough fluids I was going to be O.K. I mean, the doctors kept telling me I was fine, that my blood tests were 'normal', so I should get better, right? Not right. Because of my faith in doctors and my false belief that they know best, I kept pushing my body, and struggling to get to classes. But enough became enough, it had been almost 4months with persistent and worsening symptoms, and I felt myself slipping away. I began to become incredibly worried. Something was wrong, and I wasn't getting any better. I couldn't make it to my classes because I was too weak to even get out of bed and I was failing out of college, this is when I decided to withdraw and move back home. I was weak, constantly feverish, swollen all over, and had no appetite. I felt like I was dying. There were some days that I was sure my death was imminent and rushed myself to the ER or to the local Urgent Care, only to be turned away - being told that it was some common viral illness. Was I going crazy?! How could trained, medical doctors turn away a patient who was obviously so very sick?!

After I withdrew from college and moved home to the care of my family, our desecrate search for an answer continued. I saw an ENT and was tested for multiple cancers (lymphoma, leukemia, etc) TWO endocrinologists ( one of which was crazy enough to tell me [whilst I was in a wheelchair] that all I needed to do was masturbate in order to get my hormones regulated!!!) an immunologist, an integrative MD, a rheumatologist at the Cleveland Clinic, and an infectious disease specialist at the Cleveland Clinic. Literally, every. single. doctor I went to told me the same thing, "It's just a virus, you will be fine two weeks or so." WHAT?! Are you kidding me?!! By this point, I had been bedridden for months, losing weight fast, and basically waiting to diet. Nothing and no one would help me. I was so weak that I was visiting doctors in a wheel chair, yet they seemed to think that this mysterious virus I had really wasn't doing me much harm, and that I would be better soon. What a farce.

What I had essentially learned from my experiences in the medical system, is that doctors don't know as much as we think they do. When it comes to treating illness, most doctors will just prescribe antibiotics and hopefully the symptoms magically disappear. Now, there are things that doctors do which are wonderful. Just thinking about leaps we have made in surgical procedures is amazing. But for the most part, the majority of illnesses are misunderstood. Doctors usually just treat symptoms, not causes. Prescriptions are handed out to cover up symptoms, such as high blood pressure, anxiety, pain, etc but the root cause of the illness continues to persist. My experiences in the medical system lead me to believe that 1) doctors usually don't really listen to their patients, and 2) hospitals are businesses, and business like money; therefore, patients aren't treated as people, but as dollar signs.

I was continually turned away, continually dismissed, and continually told that I was 'fine' when I obviously wasn't. The extent of my hopelessness was consuming, and I truly began to believe I was crazy. If highly trained doctors couldn't tell me what was wrong with me, or help me get better, then I was doomed to either die, or be sick forever. I had exhausted all options in the medical system, so I began searching elsewhere.

Que in alternative treatments. Cognitive therapy, acupuncture, nutrition, and chiropractic treatments offered me the ray of hope I was so desperately searching for. First, let me note, I was diagnoses and prescribed Cymbalta by a Psychiatrist in 2010 - which acted as a springboard for health due to my new found ability to manage pain. My prescription to cymbalta and my experience in alternative medicine allowed me to heal myself. The philosophy of alternative and holistic medicine is that the human body is capable of healing itself, or regaining it's healthy equilibrium, when it is cared for properly. The practitioners I began seeing in the alternative medicine world took their time trying to truly understand me. For the first time in over a year I felt people were beginning to take my illness seriously. They were giving me hope for a brighter future, a sense of hope that was lost through my experience with the traditional medical system. And that's what happens when the medical system fails. Patients are forced to look within themselves, to find alternative treatments, and to learn how to understand the needs of their own body.

In the next few days I will be embarking on a journey with a naturopathic doctor, one whom I hope will help to shed even more light on what is going on in my body. I may have lost my faith in the medical system, but I have gained faith in the power of my body to heal itself.

If you are searching for alternative doctors in your area, look into finding a licensed naturopath or integrative medicine practitioner.

Until the next time,
Feast From Within