A Newcomer’s Introduction to your Fibromyalgia Treatment
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Table of Contents 2 5 9 12 15
Got Fibro? Cameo Appearances Treat Your Pain Living with the Loss of You An Oxymoron? Realistic Hope
Hi! My name is Simone...also known as FibroModem. I am not a doctor nor do I have any medical training. I do not pretend to know everything there is about Fibromyalgia. I have been diagnosed with Fibromyalgia since November 2011. Since then, I have started a Fibromyalgia Awareness Support page on Facebook, a blog (that has now become a website) which describes current research, as well as my life with Fibro. I edit LIVING WELL with FIBROMYALGIA, a quarterly E-Mag written by and for people with Fibro. I hope that this guide can help, at least, one person – it is just meant as an introduction to some of the things that you’re going to have to think about. Please feel free to explore all of these resources and ask any questions you might have. Regards,
email: website: Facebook page: Twitter: Shop at:
fibromodem@fibromodem.com http://fibromodem.com www.facebook.com/FMawareness2012 @Fibromodem http://shop.fibromodem.com
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Ok, you have a diagnosis...now what’s going to happen?
Most likely, your doctor is going to give you medication. There are many different medications used to manage FM, including pain medicines, sleeping pills, and antidepressants. Some help ease pain. Others boost mood and improve sleep. Working with your doctor will help you find the right medication to add to your multifaceted comprehensive treatment regimen. That way, you can begin to manage your symptoms effectively... The first medication doctors will often try is an antidepressant (this does NOT mean you are necessarily suffering from depression!), which helps relieve pain, fatigue, and sleep problems. Nonetheless, depression is commonly seen in people with FM. Older anti-depressants, called tricyclics (including Elavil (amitriptyline) and Pamelor (nortriptyline)), have been used for many years to treat FM. They work by raising the levels of chemicals (neurotransmitters) in the brain. Tricyclic anti-depressants increase levels of serotonin and norepinephrine in the brain. People with chronic pain often have decreased levels of these calming neurotransmitters. Tricyclics can relax painful muscles and heighten the effects of endorphins - the body's natural painkillers. While these medications are often very effective, the side effects can sometimes make them difficult to take as they may cause drowsiness, dizziness, dry mouth, dry eyes, and constipation. There are numerous types of anti-depressants and several of them have been shown to help relieve the pain, fatigue, and sleep problems in people with FM. The most well-studied anti-depressants for FM include Cymbalta (duloxetine), Savella (milnacipran), and Effexor (venlafaxine). Cymbalta and Savella are specifically FDA-approved to treat FM. There is less medical research to show that Effexor helps FM. Other anti-depressants that have also been studied for FM and may help include Prozac (fluoxetine), ŠFibroModem 2013 http://fibromodem.com
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Paxil (paroxetine), and Celexa (citalopram). That’s a lot of different choices to work through and yes, it’s all trial and error to see what works for you. What works for one person with FM may not work for someone else. Different anti-depressants work differently in the body. That's why you may have to try more than one anti-depressant to find the one that best relieves the pain, fatigue, and sleep difficulties. Your doctor may even want you to try a combination of more than one anti-depressant at a time. Then, there are different types of pain relievers, sometimes recommended to ease the deep muscle pain and trigger-point pain that comes with FM. The problem is these pain relievers don't work the same for everyone, either. Non-steroidal anti-inflammatory drugs (NSAIDs), when taken alone, don't typically work that well for FM. However, when combined with other medications, NSAIDs often do help. NSAIDs are available over the counter and include drugs such as aspirin, ibuprofen, and naproxen. Further, the overthe-counter pain reliever acetaminophen elevates the pain threshold so you perceive less pain. Acetaminophen is relatively free of side effects. But avoid this medication if you have liver disease. You also need to be careful taking aspirin or other NSAIDs if you have stomach problems. These medications can lead to heartburn, nausea or vomiting, stomach ulcers, and stomach bleeding. Don't ever take over-the-counter NSAIDs for more than 10 days without checking with your doctor. Taking them for a prolonged period increases the chance of serious side effects. Sometimes, your doctor will prescribe the muscle relaxant cyclobenzaprine. has proved useful for the treatment of FM. It has proved to be helpful with easing muscle tension and improving sleep. Muscle relaxants work in the brain to relax muscles; but you may experience dry mouth, dizziness, drowsiness, blurred vision, clumsiness, unsteadiness, and change in the colour of your urine. These medications may increase the likelihood of seizures, confusion and hallucinations. Most recently, Lyrica, originally used to treat seizures, is being used to treat FM. Lyrica affects chemicals in the brain that send pain signals across the nervous system. So it reduces pain and fatigue and improves sleep. Neurontin (gabapentin) is another anti-seizure medication that has also been shown to improve FM symptoms. Other medications include pain relievers such as Ultram (tramadol) which is a narcotic-like medication that acts in the brain to affect the sensation of pain. However, it is not as addictive as narcotics. ©FibroModem 2013 http://fibromodem.com
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In addition, doctors may prescribe benzodiazepines such as Ativan (lorazepam), Klonopin (clonazepam), Valium (diazepam), and Xanax (alprazolam) to help relax painful muscles, improve sleep, and relieve symptoms of restless legs syndrome. Benzodiazepines are addictive and must be used with caution on a short-term basis. Taking more than recommended increases the risk of serious side effects, including death. Powerful narcotic medications, such as Percocet and OxyContin (oxycodone) and Vicodin and Lortab (hydrocodone), should only be considered if all other drugs and alternative therapies have been exhausted and there is no relief. All of this seems quite daunting which is why you need to surround yourself with a team you trust, which may include doctors, friends and/or family. The most consistent treatment advice that all the experts in FM try to promote is a multifaceted approach. So, as well as all these medications, you will need to explore a whole range of complementary treatments. I don’t mean to scare you; in fact, I am trying to help by blogging about research and my experiences with different activities (please explore the site). There is also a directory of other FM bloggers that allows you to find people who are going through the same stuff as you.
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CAM(eo) Appearances So, you have a diagnosis and you’re armed with a brand new prescription from your doctor. Your doctor (and the medication he prescribes) is considered part of conventional medicine. If you also visit a chiropractor or acupuncturist for treatment, you’d be in the field of complementary and alternative medicine – CAM for short. CAM tries to prevent and treat different conditions with techniques such as:
healing touch
energy
herbal medicines
Many CAM therapies have been around for centuries. But do they really work? There is research to show that some CAM techniques can help with problems like pain and nausea. But other alternative therapies don’t have enough medical evidence to determine if they are effective.
Acupuncture What it is: This traditional Chinese medicine technique uses thin needles to stimulate various points around the body. Each point corresponds to a specific condition. The aim of acupuncture is to restore a balance of energy and good health to the body. The evidence: Many of acupuncture’s benefits still haven’t been confirmed. That’s because more studies on acupuncture need to be performed. But evidence suggests that acupuncture may help ease some chronic pain conditions, including:
headaches
low back pain
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Chiropractic Medicine What it is: Chiropractors specialize in adjustments – manipulating the spine to put the body into better alignment. People typically visit the chiropractor when they have pain in their lower back, shoulders, and neck. But many chiropractors claim adjustments can also improve overall health. The evidence: Chiropractic medicine does seem to provide some relief for lower back pain. But it may not be any better than other back pain treatments. Studies have also found the technique effective for:
migraine and neck-related headaches
neck pain
joint conditions
whiplash
But there isn’t much data on the effectiveness of chiropractic medicine for FM.
Energy Therapies Energy therapies use magnets and therapeutic touch to manipulate the body’s energy fields and improve health. Here’s a round-up of some common energy therapies:
Magnetic Field Therapy What it is: Magnets are thought by some to have healing abilities. Centuries ago, people believed magnets could treat everything from gout to baldness. Today, they’re worn inside bracelets, shoes, and other accessories. The evidence: There’s no conclusive evidence that magnets are effective pain relievers. There are a series of studies currently looking at a magnet therapy called transcranial magnetic stimulation which may help manage the symptoms of FM. Any results are preliminary. More study is needed to see if the therapy is effective. Magnets are generally safe. But they can disrupt the function of pacemakers, defibrillators, and insulin pumps. That makes them potentially dangerous for anyone who uses these devices.
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Reiki What it is: The premise of Reiki is that it accesses the body’s natural energy to speed healing. The practitioner hovers his or her hands over the patient’s body. Or he or she places them lightly on the person’s skin. The evidence: There is something to be said for the healing touch when it comes to bringing about a state of calm. One study showed that Reiki was effective in bringing about an increase in:
happiness
relaxation
feeling of calm
Therapeutic Touch What it is: Advocates of this technique suggest that the power of touch may direct energy flow and treat pain and disease. The evidence: It’s hard to tell for sure whether therapeutic touch works. There have been few good studies done on this technique. Researchers have investigated its effects on wound healing, pain, and anxiety. But most studies had mixed results. There is no conclusive evidence of effectiveness.
Herbal Medicine Plants form the foundation of herbal medicine. They’re taken in several forms including pills, powders, or extracts to treat a variety of conditions. Herbal medicine can be divided into three types:
Ayurvedic What it is: Ayurvedic medicine originated in India more than 2,000 years ago. It focuses on balance of the mind, body, and spirit. Hundreds of different herbs are used to:
protect the body against disease
relieve pain
improve general health
The evidence: Most studies performed have been small. They cannot provide conclusive evidence that Ayurvedic herbal medicine works. There’s also a serious caution to using Ayurvedic products. One study found that Ayurvedic herbal medicines from South Asia had dangerously high levels of:
lead
mercury
arsenic ©FibroModem 2013 http://fibromodem.com
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Chinese What it is: Chinese herbal medicines include gingko and ginseng. They are not used to treat a specific symptom or disease. Instead they are meant to restore balance to the body as a whole. These medicines can be taken in many forms, including pills, powders, and teas. The evidence: Chinese herbal remedies have been studied but the research hasn’t been well-designed enough to draw any conclusions on effectiveness. Regarding safety, there have been reports of heavy metals and other toxins in certain Chinese herbal remedies.
Traditional A number of different herbs are grown in the Western world that are considered “Western” or “traditional” herbal remedies. Most studies on these herbs have been small. So it’s hard to know for sure whether they work. A few herbs that have shown possible benefit include:
Chamomile for relieving stomach upset.
Cranberry for preventing urinary tract infections.
Flaxseed, garlic, and soy for lowering cholesterol.
Peppermint oil for preventing heartburn.
St. John’s wort for relieving mild to moderate depression.
Although herbal remedies are considered “natural,” they can cause side effects. They may also interact with drugs you’re taking for other conditions. Talk to your doctor before taking any herbal medicine. Like everything else, what works for one person doesn’t necessarily work for another. So, it will be more trial and error…
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Many experts believe the best treatment for fibromyalgia is a multifaceted approach that combines medication with lifestyle changes and alternative treatments. I am working on my own treatment plan – do I have a choice (after my specialists have left me abandoned)? But what about if you’re new to all of this? Where do you even start? A treatment plan gives structure to getting from here to there. Be realistic and (yes, you’re already probably sick of hearing this already) small steps! A treatment plan is different from devising goals because of its flexibility and internal exploration. In most clinical settings, a treatment plan review is done quarterly or even monthly. After each review, the plan is rewritten to meet current needs.
Start With a Diagnosis There are no lab tests for fibromyalgia. Doctors diagnose it by considering criteria such as how long you’ve had pain and how widespread it is, and by ruling out other causes. This can be a long and complicated process because the symptoms associated with fibromyalgia can be caused by other conditions. So it’s best to see a doctor who is familiar with fibromyalgia – which can be easier said than done, sometimes!
Learn About Fibromyalgia Medications – You are YOUR Best Advocate! Once you’ve been diagnosed with fibromyalgia, your doctor will talk to you about treatment options. Several types of medicines are used to help manage fibromyalgia symptoms such as pain and fatigue. Three medications are FDA-approved to treat fibromyalgia:
Cymbalta (duloxetine): a type of antidepressant called a serotonin and norepinephrine reuptake inhibitor (SNRI). Researchers aren’t sure how Cymbalta works in fibromyalgia, but they think that increasing levels of serotonin and norepinephrine help control and reduce feelings of pain.
Lyrica (pregabalin): Lyrica is a nerve pain and epilepsy drug. In people with fibromyalgia, it may help calm down overly sensitive nerve cells that send pain signals throughout the body. It has been effective in treating fibro pain.
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Savella (milnacipran): Savella is also an SNRI. While researchers aren’t exactly sure how it works, studies have shown that it helps relieve pain and reduce fatigue in people with fibromyalgia.
Antidepressants are also sometimes prescribed to help people manage fibromyalgia symptoms:
Tricyclic antidepressants. By helping increase levels of the brain chemicals serotonin and norepinephrine, these medications may help relax painful muscles and enhance the body’s natural painkillers.
Selective serotonin reuptake inhibitors (SSRIs). Your doctor may prescribe one of these types of antidepressants by itself or in combination with a tricyclic antidepressant. SSRIs prevent serotonin from being reabsorbed in the brain. This may help ease pain and fatigue.
These medications are also sometimes prescribed for fibromyalgia:
Local anaesthetics. Injected into especially tender areas, anaesthetics can provide some temporary relief, usually for no longer than three months.
Anticonvulsants or seizure medications such as Neurontin are effective for reducing pain and anxiety. It is unclear how these medications work to relieve the symptoms in fibromyalgia.
Muscle Relaxants are occasionally prescribed to help alleviate pain associate with muscle strain in those with fibromyalgia.
Stay Active Exercise is an important part of managing fibromyalgia symptoms. Staying physically active can relieve pain, stress, and anxiety. The key is to start slowly. Begin with stretching and lowimpact activities, such as walking, swimming or other water exercises, or bicycling. Low-impact aerobic exercises such as yoga, tai chi, or Pilates can also be helpful. Prior to starting any exercise routine, or if you want to increase the intensity of your exercise, talk with your doctor.
Physical Therapy Physical therapy can help you get control of your illness by focusing on what you can do to improve your situation, rather than on your chronic symptoms. A physical therapist can show you how to get temporary relief from fibromyalgia pain and stiffness, get stronger, and improve your range of motion. And she can help you make little changes, such as practicing good posture, that help prevent painful flareups. ©FibroModem 2013 http://fibromodem.com
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Alternative Therapies A number of popular fibromyalgia treatments fall outside the realm of mainstream medicine. In general, there hasn’t been extensive research on complementary and alternative medicine (CAM), but anecdotal evidence suggests that some may work. Always talk with your doctor before starting any alternative treatment. Popular alternative treatments include:
Acupuncture. This ancient healing practice aims to increase blood flow and production of natural painkillers with thin needles inserted into the skin at strategic points on the body. Some studies report that acupuncture may help ease pain, anxiety, and fatigue.
Massage therapy. This may help reduce muscle tension, ease pain in both muscles and soft tissue,improve range of motion, and boost production of natural painkillers.
Chiropractic treatment. Based on spinal adjustments to reduce pain, this popular therapy may help relieve fibromyalgia symptoms.
Supplements. A number of dietary and other supplements are touted as treatments aimed at relieving fibromyalgia symptoms. Some of the most popular for fibromyalgia include magnesium, melatonin, 5-HTP, and SAMe, which may affect serotonin levels. However, results of studies on these supplements are mixed. Be sure to talk with your doctor before taking any supplements. Some may have side effects and could react badly with medication you are taking.
Herbs. As with supplements, scientific evidence for the effectiveness of herbs is mixed. A few studies have shown that St. John’s wort can be as effective as certain prescription medication for treating mild depression.
This is just a start – and you will probably need to tweak your plan as you go along, throwing out activities and treatments that don’t work for you, while grasping the positives with both hands. Remember, it may take a while to get where you want to be – it is all about experimentation (and just because something works for me does not mean it will work for you). Lastly, try not to get discouraged (Ha!) but we’re all here to support you.
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There are 5 stages that make up the framework that allows us to live with loss: denial, anger, bargaining, depression and acceptance. They are tools to help us frame and identify what we may be feeling. They can also be applied our grief over the loss of our ‘old’ selves. These tools are not stations on a train line. Not everyone goes through all of them or in a prescribed order. Have you been to any of these places? Stuck at one?
As you accept the reality of loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface…
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People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage like getting on and off a train. We may feel one, then another and back again to the first one.
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At times, people in grief will often report more stages. Just remember your grief is as unique as you are.
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While improvement is reasonably common for FM patients (insert CHEER!), a return to your pre-illness level of health is rare, says Dr Bruce Campbell of the CFIDS and Fibromyalgia Self Help website. In his experience with several thousand people, Dr Campbell estimates that progress usually tops out at something like 50% to 60% of normal. There are people who do even better, but they are rare. Further, it has been observed that people with FM often have an inaccurate sense of their level of functioning. People frequently over-estimate their functional level by 5 or 10 points on the websites 100-point Rating Scale and occasionally are 20 to 25 points too high. (Note: If you would like to get a check on your self-perception, ask one or two other people to rate you. It is a great way to remain realistic!) The challenges you face may make your chances for significant improvement easier or harder than those of others. Here are some important factors: 1)
Severity The impairment FM has a wide range. The bottom line for improvement: some climbs are longer than others.
2)
Co-morbid Medical Issues Some people have just one major medical issue: FM. But many have more health issues. Some of the most common other medical issues include sleep disorders, orthostatic intolerance, food and digestive problems, migraine headaches, thyroid problems and clinical depression. The implication for improvement: It’s simpler to deal with one problem, more complicated to address several.
3)
$Money$ Having adequate money reduces stress as well as providing access to medical help, medications, adequate food and good housing.
4)
Support People’s family situations differ as well. Some feel understood and supported, while others are challenged to have family understand and believe them. In addition, because FM may often be severe, people can feel isolated. The level of support a person experiences varies greatly. Other people can provide practical help, understanding and encouragement; living without support creates challenges. Isolation forces people to do more for themselves and often leads to discouragement.
5)
Stability Predictability and routine are two factors that make improvement easier. The amount of stability varies from person to person. Some people with FM are able to live in one place over time and their family situations are stable. ŠFibroModem 2013 http://fibromodem.com
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Others have to deal with several to many changes: one or more moves, the loss of important people in their lives, etc. 6)
CONTROL Taking responsibility for those things that you can control is a big factor in improvement, perhaps the most important. How we live with FM can affect symptom level and even its course.
Realistic Hope Some factors may be out of our control, but we can affect others. Those who do well share a positive attitude AND a willingness to adapt. This is called having realistic hope. It combines two apparently conflicting parts: acceptance and belief that improvement is possible. Acceptance means acknowledging that life has changed. Instead of living as if you were well or searching for a miracle cure to restore you to full health, people with this attitude accept that it is necessary to live differently, for now and perhaps for the long run. At the same time, they have a confidence that they can find ways to make their lives better. Realistic hope is different from both resignation and from the search for something that restores a former level of health. Both of these other approaches often lead to helplessness. Realistic hope, in contrast, gives people a way to help themselves and to regain a sense of control.
Personally, I don’t feel that I have reached the acceptance stage so I don’t think I am qualified (am I ever?) to write about the topic of ACCEPTANCE however please read the following post by Jen Reynolds of FibroTV:
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I think one of the most difficult issues to deal with when you are diagnosed with a chronic illness is acceptance. For the first couple years I was angry, in denial, and did everything I wanted to and paid big time every time I did. I was very young (18) when I was diagnosed and I just wanted to do everything my friends were doing. It was almost like I had to prove to them and myself I was not going to change and would even push harder than a healthy person. I was working full-time taking care of my boyfriend’s 2 kids 3 - 4 days out of the week, keeping up a 3 bedroom house, and keeping a very hectic social calendar. This is when I started taking a lot of medication to cover up the symptoms of the poor choices I made that affected my health and began to decline rapidly. There is almost a mourning process when you get diagnosed. On one hand I was happy they figured out what was wrong but on the other, all I wanted was to be normal again. I held on to a lot of anger because I wanted my life back the way it was. I would try to stay busy every second of the day because once I stopped the pain would be unrelenting and I would think about it more if I did not keep busy. I felt that accepting I was ill was giving in or giving up. What I later realized is that acceptance was key to begin my journey to wellness. Giving up means that you feel hopeless and that nothing that you do can change the situation so you let yourself go. I ended up doing this for about 12 years. At one point I was on 12 medications and went from 97 pounds to almost 200 pounds in a year. I ate what I wanted because I had the attitude that if I was going to be like this for the rest of my life I should at least be able to enjoy what I eat. I did not know that the food I was eating was making me have more pain and more fatigue. I just did not connect food to pain because it made me feel good to eat it! I ate fast food at least once a day and I loved having a donut for breakfast because it was cheap and fast before I went to work. My breakfast consisted of a donut or two, a Dr Pepper, two Vicodin and a Soma. No wonder why I felt so bad! Everything I put into my body when I first woke up had 0 nutrition value and was toxic. I was basically in denial about my health and denied any personal responsibility for taking charge of it and taking care of my body. I would tell myself,”I did not ask to be sick it is not my fault!” It was not my fault I got sick that is true, but it was my fault for treated my body the way I was and I continued to decline health wise because of it! Life is a series of natural and spontaneous changes. Don’t resist them; that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like. ~Lao Tzu I eventually accepted that I had fibromyalgia and started to work on my health. It was actually very empowering to accept that I had fibromyalgia and that I needed to take care of myself physically/mentally/and spiritually. I felt like I had at least some control of my body again. I started not “overdoing it.” I dropped the process foods with the exception of going out to eat once a week and I started working on my mind and spirit. Once I started doing these things I started seeing small improvements in my ©FibroModem 2013 http://fibromodem.com
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health. At times it was very frustrating because the results were so small and they were slow but every small success adds up! It was much easier popping a pill and having that little relief for a short period of time! I saw quick results that way but I developed rebound pain that was even worse than the fibromyalgia and it just was a vicious cycle for me so I made the very personal decision (with the help of my doctor) to go off the medications. Once I got off all the meds (which took about a year) I could not believe the difference in my pain levels. No matter how sick you are and what stage you are with your acceptance of your chronic condition there are things you can do to improve your health that will decrease pain and help you live a more full and productive life. For each person it will be different depending on what they have and what the underlying cause is for their condition. There is always an underlying cause of a health condition and unfortunately Western medicine never tries to figure it out and gives medications to cover up symptoms. It is just the way Doctors are trained here. They are trained to diagnose and prescribe medications accordingly. We can see with the rapid increase of chronic illness this is not working. We are in a Nation that supports sick care – there is no “health” in healthcare right now. It is going to be up to YOU to find the underlying cause. The best way to do that is to look back to when you first became ill and what happened during that time. Good Nutrition is always a positive for the body and will make you feel better. Also many conditions are caused from food intolerance’s to ether wheat, dairy, and chemicals in foods that are not supposed to be in the body. If you do have a intolerance to one of these things it is a good thing because that can be resolved! I highly recommend that everyone get tested for food allergies and intolerance’s because it is such an easy fix. BUT we are not just physical beings, so if there are any unresolved issues from your past that cause unresolved anger and resentment that is something that must be dealt with in order to see your symptoms decrease. Life is a journey and the choices you make every day affect the quality of your life. No one can make positive changes for you, that is something you have to do for yourself. You may always have some symptoms but you can live well-being chronically ill. It will take some lifestyle changes and change is very hard. Us humans are stubborn and resist change, but without change everything will stay the same. If something is not working move forward to the next thing until you find what works best for you. Don’t give up! Accept and move forward making positive healthy choices for yourself. You deserve it!
Good luck,
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