I attended the birthday party of a good friend last night. Just an intimate and impromptu get-together at her house, I found myself given the opportunity for the first time since I have taken up the proverbial Fibromyalgia cross to promote my condition and raise awareness, the new charge of my life. But I was at a loss as to how to explain it without launching into 20 minutes of background information to answer each question. It is a messy and complicated experience with so many variables between every patient, each with an individual and woeful tale to tell. It became abundantly clear as I was losing my momentum and focus that I must devise a “30-Second Elevator Ride” synopsis that clearly defines, explains, and promotes the cause. So today amidst the booming NY Giants (GO GIANTS!) game pulsing from my big-screen, I set out to research and condense the best, most effective, clear & concise synopsis of Fibromyalgia that will get the word out and leave each person I encounter with a basic and clear understanding of what Fibromyalgia is. Not Fibromyalgia as Lyricaor Cymbaltaadvertise it, not to diss the attention their advertising brings, but really WHAT IS FIBROMYALGIA?
“Fibromyalgia affects between 2-6 million Americans. It is a neurological condition stemming from the central nervous system that produces a sensation of severe body pain, stiffness, cognitive impairment, fatigue & insomnia. Fibromyalgia patients frequently suffer from other symptoms and complex medical conditions as well. It is believed to be caused by a cluster of factors working together; genetic mutation susceptibility, infections, and a specific trauma or injury. There is no cure and prescription treatments offer limited relief with high incidents of side effects. It is a lifelong, non-degenerative condition that can be managed using a holistic, total body approach to wellness but the quality of life of a Fibromyalgia patient is forever altered as basic life functioning diminishes.”
Well, there you have it, folks! This is Fibromyalgia as Leah views it. I tried to keep it scientifically loose, comprehensible to the average person, and broad enough to encompass the variety and flux of symptoms and severity we all suffer from. Now I just have to commit this to memory (fibro fog!) and pull it out any chance I get. If I keep the focus off my specific experience and make it more about a general condition manysuffer from I believe that will go a long way to promoting the “realness” of this awesome predicament we find ourselves in.
Fibromyalgia has come a long way since I was diagnosed in 2006. The FDA approved Lyrica a year later and overnight it went from “being in your head” to a real condition…for some medical professionals. Not all jumped on the bandwagon because there is still no definitive test to confirm the diagnosis, but it was mildly legitimized. At least there was a sector that believed us, that we were hurting, throbbing, on fire inside, crushing ourselves as we walked, not just crazy or lazy or wimpy. Then along came Cymbalta in 2008 and we were given another win, another “option” in managing raging invisible pain. Savella came along last year and has rounded out modern medicines attempt to give us our lives back. For some these drugs have worked wonders, for others, they have caused the disaster. For many, it lies somewhere in between, but at least the word Fibromyalgiahas some sort of an association with the general public. When I tell someone I have Fibromyalgia I say, “You know, the commercials for Lyrica?” and they usually nod their head with a vague sort of recognition, not at all getting it, but at least I don’t sound like a lunatic mentioning it for the first time. But Fibromyalgia awareness has a LONG way to go.
As I have connected with hundreds of fellow fibrates and we exchange stories, methods of management, frustrations, and sorrows accompanied with this disease I have become aware of a vicious pattern, what I am calling The Fibromyalgia Life Cycle… The potential Fibromyalgia has to completely destroy a person and take down their lives is astounding. Time and time again my heart bleeds as I listen to tales of broken marriages, lost jobs, degrading doctors, and denied disability claims. These patients suffer body-wracking pain while they watch their lives flush down the toilet, barely able to get out of bed and do anything about it.
This is the pattern of the worst-case scenario, what happens all too often to entirely too many people:
1. A person gets sick, develops horrible pain and it does not go away.
2. They go to the doctor who runs a bunch of tests and tells them they are just fine, nothing is wrong. If they are lucky the doctor believes them and offers them some drug or another to help with the pain.
3. The pain, fatigue, and insomnia progress to the point that it’s all-consuming. Living life as it was before is just not possible and personal relationships begin to suffer, some are even lost as their significant others flee the insanity of a very sick person given very little help getting better. Many refuse to believe or understand the incredible pain and push it off as the patient’s fault or a mental problem. The ability to parent their children, maintain relationships and friendships, or exist as a normal person dwindles down to nothing.
4. The capacity to do their job is compromised as more and more days of work are missed and important information “forgotten” in the file of fibro–fog.
5. The job is gone, and the health insurance goes with it. Now living on unemployment or disability (if they are lucky enough to have that) and Medicare, all the while the disease progresses and makes life damn near unlivable!
6. SSI Disability claims are repetitively denied due to there being no firm, clinical test to “diagnose” Fibromyalgia and the full impact it has on a person’s ability to function or doctors to support the depth of destruction this disease holds over a person life.
7. Left horribly sick with poor medical options and no income, one better hope someone is still around to offer some support and let them move in…
And there you have it, the 7 steps to hell! Now many are fortunate enough to have some support network, personal fight, success with medications or alternative treatments, or income to stop this destructive cycle in its tracks. But the point I am trying to make is that this can happen and does happen all too often. This is why I believe my strokes were the paddles to my heart to wake me up and open my eyes to how incredibly lucky I am to have survived Fibromyalgia. I am making it my personal mission to lead the charge to change the reality of living with this disease for up to 6 million of us in the USA alone. Way too many still discredit this disease and it is time for this to stop! Science is tick-tocking at a snail’s pace in figuring out what Fibromyalgia really is or how to cure it, if possible, or treat it at least. We all know it will not kill you, just make you want to kill yourself. So stay strong fellow fibrates! We are going to change the face of living with this disease.
I logged onto Facebook this morning, feeling estranged and isolated from my Fibro family. This weekend absorbed all of me in physical pain and emotional anguish debauchery of lowered Prednisone dosing and all the joys that accompany coming off that drug. Just taking the dogs on a walk this morning picked me up and plopped me right back in the middle of Northern California, about 2007. Pick any month, the weather sucks all the time, and that feeling of every muscle screaming with the slightest movement and each nerve ending snaking and snapping pain throughout every inch inside of my body. Each steps a prayer closer to home. I truly battle between accepting that this is the new me post-strokes, and this is just the adjustment of coming off Prednisone and I will resume my nicely managed form of Fibromyalgia once this drug is out of my system (what my doctor thinks). Somehow I get the feeling it is not going to be that easy.
I glanced at my feed and my attention was drawn to a blog from the NFA about Fibro and relationships, marriage, and dating. This is something we ALL deal with, for we are not the people we once were, and hanging onto a relationship from then is very difficult. So is finding a new one with the limitations Fibro imposes. It’s a no-win, sticky situation. The author of the blog quickly discloses her 3 failed marriages and proceeds to describe how her illness impacted her first one, the man to whom she was married when she first got sick and received her diagnosis. She could not participate in the active social life they once shared (sound familiar?) and he went on without her. And that stopped me cold. Because it made me realize one of the key components of why my marriage is still successful is because my husband refused to do that. If we had plans and I was too sick to go, we canceled. If an opportunity arose to attend a function but it was after a long day of work for me, we declined. He would sit by my miserable and complaining and bitching and moaning aside, watching Law & Order re-runs, miserable himself I am sure. But he stuck by me. I felt terrible like I was keeping him in prison, begging and pleading with him to not quit his life because I had to quit mine, but he always refused, never a question in his mind that he would rather be with me as I was than without me anywhere.
So when I started getting better and living life again, we started living life again. And as we discovered the reality that mess of an illness left my life in, shambles and broken, it was our life to put back together again. I started hearing from him that he was so glad to be getting his wife back. Still to this day he is quite protective of our time and does not want to spend it with a lot of other people. How did I get this lucky? Beats the hell out of me, but that is what I got. It is normal, I suppose, to put your own needs above your partner’s or “the relationship’s” needs. But my husband was never that man. He wanted me by his side in everything he did or he was not going to do it. He has always been a bit obsessive, and our relationship is no exception. He has sacrificed in many ways, because of my illnesses. Yet last night as we are going to bed I shake my head and say, “This has been an insane life, a crazy last 5 years.” His reply was that it had been for me. I was the one all this crap had happened to. I asked him so what, then, he has just been along for the ride? He smiled and said yes.
Either that or this terrible impatience and frustration and I kinda have to admit, pure anger pouring out of me is the premonition of a flare. But I have to say all I do is look around at the wreckage that is my life and get really pissed off. The dust bunnies are having babies, getting my carpet cleaned has only made it dirtier, not that I ever vacuum. The laundry needs to be done, dishwasher emptied and re-loaded, dogs need a bath and I need blonde roots on my head and the dirt cleaned out from under my fingernails. And don’t get me started on the condition of the bottom of my feet! My bills need to be paid and taxes prepped. Let’s not even mention The Crusade, the new website, our next strategy to push our fight for awareness forward. People, in general, annoy me. I am so sick of advice! I know what I need to do, I am just not doing it. I think all it does is make the advice-giver feel good, useful, needed. I try to be nice but inside I am impatient and seething. It is all I can do to not snap or even yell. It is not my job to make you feel good about yourself! But these are just people that are trying to help me! And physically I feel great! Lilac pain, walked my doggies, did my yoga. I am trying so hard to remind myself that the aftermath of my strokes last summer could have been so much worse, but that does little to comfort me or soothe the raging monster inside.
I am so sick and tired of EVERYTHING is a struggle! I recall fondly, all reality aside, a carefree youth of playfulness and passion. Of not worrying about tomorrow or caring much about today except for finding the fun. The next thing to do. Of hanging out, no plans or destination in mind. Just being. Of keeping my front door unlocked and yelling Come into every knock, knowing it is another friend coming to play, have some fun. Now I get annoyed if someone calls and wants to spontaneously come over. They upset my order, my balance of what I thought my day would be, and just suck from me the energy I need to meet my basic obligations. I am an empty well with nothing to give, and it is beginning to infuriate me! I want to learn Spanish, look fabulous, take Salsa lessons with my husband. I want friends to play with, I want my social life back! I want to go on vacation! I don’t want every ping and pang I feel to send me into a PTSD tailspin of fear that something else is going to happen to me. Fibromyalgia is going to overtake me again. Pancreatitis is going to strike. When I get a headache I don’t just get a headache, I get a fat dose of paranoia that I am going to stroke again and I constantly live on the verge of fear that I am going to die. For there are NO guarantees in life and I have felt this first hand too many times.
So all of that being said…it is up to me to fix this. When there is a problem in life you can either change the problem or change your attitude about the problem. So many of my problems are not in my control. So the attitude needs adjusting. That is in my control. I can channel this force of frustration into productivity and start fixing these little nuisances in life that are overtaking my happiness, gratitude, grace, and generosity. I can take a deep breath and stop expecting Superwomanto come back. I just don’t think she ever will. I can be kind to myself and take joy in cleaning my home bits at a time, as my body will allow, making it beautiful for my family. I can revel in bath time with the puppies, for they will not be here forever. I can be grateful that even though it is by the skin of our teeth, the bills do get paid eventually. I can live a life of intention and purpose, not chaos as though every event has swept me out to sea. I can put my faith in front of my fear and persevere. And as my favorite lyricist Eminem says in his anthem of opportunity, Success is my only option, failure is not…feet fail me not cuz maybe the only opportunity that I got.
At the end of July, I had 2 strokes. Old news to most, new news to a few. I was diagnosed with a treatable and reversible form of Vasculitis, put on Prednisone, and sent home to recover. Now I will utilize modern medicine for many things but prefer to go as natural as possible as much as I can. Pancreatitis, give me the drugs. Vasculitis, bring ’em on! VICD, you bet ‘cha I will crush that virus with anti-virals. But day-to-day living and management of Fibromyalgia depend on lifestyle for me. I rely on a moderate dose of Neurontin and habit modification; reducing stress, taking my vitamins, exercising, cutting out processed foods from my diet, etc. I always believed that steroids were BAD and to be avoided at all costs. In retrospect it is kinda funny (in that sick and ironic funny way), when I was in the ER and the doctor told me he was going to do a Spinal Tap, which would require a minimal amount of steroids, I balked at him. NO STEROIDS I said. He smirked in a sad way that said I did not have a choice. So the irony is not lost on me that the treatment for my particular stroke-causing condition is high-doses of Prednisone for months on end.
WOW, that was a wild ride! Besides being a manic and frantic freak–out stress–case shaking with tremors, packing on the pounds from shoveling sugar down my throat, and growing hair all over my body, there were 2 good things that came out of that experience. “Normal” energy levels and NO Fibromyalgia pain! But here I sit, nearly 5 months later, slowly weaning down off the steroids and feeling AWFUL! Oh, I am in pain, unmotivated, sleeping 10-11 hours a night, lazy, irritable, thoroughly annoyed with everyone else’s emotional histrionics. No patience, no compassion, no sympathy; for the acute misery of life with Fibro is rushing back to me and it sucks a big fat toe! My logical side knows my body is finally getting a chance to heal and repair from the strokes now that I am not full of false drug energy. But my emotional side is having a hard time adjusting. I got used to doing 4-5 things in a day! I became conditioned to expect a certain level of productivity out of myself. I came to rely on unwavering motivation and boundless production. I was allowed to be my natural type A again with no consequences and I liked it! On my Prednisone high, I even fought with my husband over watching TV. I certainly did not have time for it, was way too busy to sit down and be bothered. Now I have to take breaks in between activities and have resumed my relationship with the television, putting her back in “best friend” status.
I will heal from this. I will go back to who I was before the strokes, just that much better for having survived yet another life-threatening crisis successfully. I will get Fibromyalgia back under my thumb. I will lose the weight I have gained, catch up on the sleep I have missed, resume the exercise I keep skipping, settle into a routine of fruition. I will move forward in my life. And it will be real, sustaining, long-term progress. Thank God there was a treatment for the strokes I suffered from, that the 8 more I was mere minutes away from having did not claim my life. Although the treatment has been brutal, it is, like most else in life, well worth it. For I am alive! I may be in pain, fog-brained, tired, sick of being sick, and totally unmotivated, but I will prevail. I will keep on keepin’ on because I have to. I have this one life to live and no matter what is thrown in my path, live it I will!
The premise of the Gupta program is that fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) are caused by abnormalities in the functioning of brain structures that process physical and emotional threats to the body. However, connections in the brain are not fixed and can be rewired. Neuroscientists call this process “neuroplasticity”. The program was created by Ashok Gupta, who suffered from ME/CFS himself, but has since recovered.
The primary region in the brain involved is called the amygdala, a small almond-shaped structure in the brain. The amygdala interprets sensory information in order to detect potential threats to the body. If the amygdala determines that there is a threat, it triggers a response from other brain regions in order to protect the body.
However, in certain people, the amygdala may overprotect the body. Many patients with CFS/FM experience a viral infection and/or a period of heightened stress at the beginning of their illness. These circumstances put the amygdala on ‘high alert. The amygdala begins to interpret sensations in the body as dangerous (like back pain or fatigue after a virus), triggering negative thoughts in the conscious mind about these symptoms, and causing a constant, unremitting stress response in the body. This stress response causes further negative symptoms (sleep disturbance, pain, digestive issues, etc.) – setting the stage for a vicious cycle in the body, which we call fibromyalgia.
I can completely relate to this hypothesis. In the year before I developed FM, I had mumps, bronchitis, gastroenteritis, as well as back pain. Then I began an intensive graduate studies program, which caused a lot of anxiety. I quickly developed a cascade of FM symptoms, including body-wide pain, fatigue, and insomnia.
At the core of the Guptaprogram is an amygdala retraining technique. This technique involves a series of steps that focus on changing your relationship to your symptoms. Retraining includes recognizing and interrupting the flow of negative thoughts about your symptoms; changing your self-talk in a compassionate and positive direction; and visualizing health and happiness in your body.
In addition to the amygdala retraining technique, the program includes a daily meditation component, as part of the larger brain retraining focus. Meditation is, essentially, a way to practice being present. According to Jon Kabat-Zinn, a pioneer in the field of meditation and medicine, meditation is a practice of learning to “pay attention, on purpose, in the present moment, non-judgmentally.” Researchers have investigated the effect of meditation programs for patients with chronic pain conditions and found overall improvements in bodily pain, quality of life, and psychological symptoms (Rosenzweig et al., 2010). I have personally benefited from regular meditation practice by learning that most anxiety comes from worrying about the future or reliving difficult moments from the past, rather than from anything going on directly in this moment. Learning to be more present has helped me reduce stress and anxiety by reinforcing what my grandma used to say –– worry aboutcrossing that bridge when you get there!
The goal of brain retraining is to substantially improve FM/CFS symptoms and even recover from these devastating conditions. Is it really possible? A small clinical audit found substantial improvements in 90% of patients with CFS who attended Ashok Gupta’s clinic in London. The Gupta program website is full of success stories and positive testimonials. The program is designed for patients no matter how long they have suffered from the condition.
The Gupta program consists of a DVD program and Webinar series which includes:
a fully interactive DVD programme of 14 Training Modules with clinical director Ashok Gupta;
a comprehensive manual (which is a transcript of the DVDs), as well as worksheets and handouts
2 Audio CDs with Meditative and Breathing Techniques
a large floor chart mind map to help you “retrain your amygdala”
a Follow-up 3 Month Group Coaching Webinar Series: 12 Interactive Sessions with Ashok Gupta in the form of a weekly webinar on a weekday evening, 6pm UK time, with the opportunity to ask questions and see feedback from others
The Gupta program also incorporates a free app called ‘The Meaning of Life Experiment‘ with 30 days of free meditations. This is an excellent meditation app. Ashok Gupta guides 10 or 20-minute meditations on topics like dealing with difficult emotions, gratitude, and inner peace. This app has helped me to deepen my meditation practice and I can’t recommend it highly enough.
Before I share my personal experience with the Gupta program, I should mention an important caveat. During the five months since I began the program, I have undergone surgery and experienced complications from an unrelated chronic pain condition (endometriosis). For this reason, I do not expect to see improvements in my physical fibromyalgia symptoms at this time. (As an example, my unrelated chronic pain condition often keeps me awake at night, so it’s not surprising that I experience fatigue and brain fog after a bad night’s sleep). However, I have been surprised that my fibromyalgia symptoms have not flared or worsened despite the pain and disruption of my endometriosis.
Instead, the benefits that I have experienced are primarily in mentally and emotionally coping with chronic pain and illness. The daily meditation component has helped me to be more self-aware. What I really like about the Meaning of Life Experiment app and the meditation and breathing technique CD is that the guided meditations go beyond practicing being present. The ‘soften and flow’ and ‘surrender’ meditations have provided me with invaluable techniques for handling difficult emotions, like anxiety, that can accompany life with chronic illness. On the flip side, meditations on gratitude and cultivating inner contentment have helped me to take in the positives of small moments of enjoyment throughout my day. Finally, meditations on self-compassion have helped me to better understand patterns of negative self-talk or self-judgment. In the same vein, the amygdala retraining technique has helped me to interrupt unhelpful thought patterns like hyper-vigilance over symptoms or catastrophizing negative experiences, like having to cancel plans at the last minute. Since these negative thoughts are associated with an amygdala on high alert, I’m hopeful that breaking these cycles will help improve my physical fibromyalgia symptoms over time. Overall, I can say that I feel more positive and in control since I began the Gupta program.
The Gupta program costs $299 in the US/CANADA. One aspect I like is that if you aren’t satisfied with the DVD Home Study Course, you can return it for a full refund after 6 months, and for up to a year from purchase (minus the cost of postage and packing).
For Fibromyalgia Awareness Month, I wanted to share my illness journey here on the blog. My story starts eight years ago. It wasn’t a climactic beginning. It was just achy low back pain that got worse the longer I sat writing my M.A. thesis. It seemed like a common enough problem to have, except for the fact that I was 23. The nurse told me to take ibuprofen 24/7 and stretch. Spoiler alert: it didn’t work. About a year later, my body gradually began to fall apart, limb by limb. My back pain worsened. My knee gave out. My shoulders become too painful to allow me to type. This is what the doctors call “gradual onset”.
I thought I was losing my mind.
My doctor at the time told me all she could do was suggest Robaxacet. At this point, I was starting my Ph.D. The physical demands of reading and writing 24/7 began to take their toll, exacerbating my pain. Daily functioning on my own became increasingly difficult. My fiancé (now husband), who was living 4 hours away, had to come every weekend to help me with the chores (groceries, cleaning, etc.) that I could no longer do. In retrospect, I think the stress of the program and my fear about not being able to meet expectations, as well as not being able to understand what was happening to me, pushed my body past the point of no return. After that, I developed more of the classic fibromyalgia symptoms, like insomnia, fatigue, and digestive problems.
I was fortunate to have been referred previously to a pain clinic for pelvic pain. This meant I was able to see a pain specialist for my musculoskeletal pain within the same year all my fibro symptoms exploded. In March 2012 he diagnosed me with fibromyalgia.
I was so relieved after my diagnosis that my symptoms had been validated – and given better medication than NSAIDs. I was given tramadol, which reduced my pain, and doxepin, which helped me to sleep. But I still hadn’t absorbed yet what this diagnosis would mean for my future. After my diagnosis, it became obvious that even with treatment, no amount of accommodations would allow me to continue my Ph.D. I had tried everything I could think of so I could stay – withdrawn from my TA position, put in place disability accommodations to allow me to submit work late, bought expensive adaptive devices, and installed voice recognition software.
Feeling like my life was spinning out of control, I started having panic attacks on campus. When the spring term ended, I went back home to move in with my fiancé and decided to withdraw from the Ph.D. program.
With huge relief, I went on medical leave from my studies. However, I was immediately confronted by the problem that my days were empty of activity or responsibility. I remember dragging myself out to a local cafe in the afternoons while my fiancé was at work. I wanted the anonymity of a public place, where I could feel ‘normal’ for a while. It was the only cafe I could go to because the chairs were sensible rather than funky. Still, I had to bring my backrest with me, which generated stares from other patrons. I would cover it with my coat in order to try to hide it from attention. I could no longer type or hold a book due to pain, so I was embarrassed to be sitting at a table without a laptop or reading material, like everyone else. I listened to audiobooks or free online course video lectures instead. I would set up my tablet so that it looked like I was working, rather than listening and staring around. I envied all the other people my age, surrounded by papers, purposely tapping away on their computers. The goals that I had been pursuing were on pause, indefinitely. I grieved for my old life. I pushed myself to go to the cafe, even on days I experience brain fog or fatigue because staying home felt like giving up. I spent that year in a state of shock. I was always someone whose identity was wrapped up in my work. I didn’t know who I was anymore.
Gradually I started trying to put the pieces back together. When I got diagnosed with my chroniccondition all the information about exercise seemed so out of touch with the reality of my life. At the time, I had trouble bending forward, which meant I needed help with basic tasks like shaving my legs. I had trouble getting up or down from sitting on the floor. I rarely took the stairs and had trouble walking or standing for longer than ten minutes. Since I was already tired, sore, and busy then I wasn’t going to be able to go to the gym. I couldn’t afford a personal trainer. With my back pain, there was no way I could participate in the group yoga classes I used to take in university. Even more frustrating was the fact that all the research I came across proved how beneficial exercise is to health. I knew that I should exercise but I felt like I couldn’t.
I found two at-home instructional DVDs in yoga/pilates and tai chi that I was actually able to do, which helped me to improve my physical functioning. I started seeing a physiotherapist who put together a thorough stretching routine for me to do daily. Without a doubt, this is the single most effective thing I tried to improve my health and well-being. My pain decreased and my quality of life increased.
I was fortunate to be referred to a Cognitive Behavioural Therapy program by my pain clinic. I found participating in the course very valuable for learning tools to manage the negative thoughts and feelings that accompanied my fibromyalgia. One of the core parts of the program was learning to identify negative thinking traps or ‘cognitive distortions. These are thoughts that “sound rational and accurate, but really only serve to keep us feeling bad about ourselves.” I learned that I tend to think in “all or nothing” terms – a cognitive distortion. I would say to myself things like “if I can no longer pursue my career, I am a failure in life”. In CBT, I learned to challenge these distortions with the reality of each situation. For example, in response to the statement above, I challenged it by saying “While being in pain means I have to do less, that does not reflect on my personal worth, nor does it mean what I can do is meaningless”.
I was also referred for a Mindfulness–Based Stress Reduction course by the pain clinic. In this course, I learned to be more mindful of the present moment. I learned that worrying about the future or dwelling on the past, only makes me suffer more in the present. It’s better for my quality of life if I return my focus to the next best thing I can do for myself at this moment. Critically, the MBSR course reminded me that, even with pain and flare–ups, there are small moments of enjoyment, if I only stop and notice them – the taste of a good meal, sharing a hug, a sunny day, or a favorite hobby. One of the key lessons I learned through mindfulness is that my thoughts, feelings, and sensations, no matter how difficult, are changeable, like the weather. When I hold on to the fact that even my darkest moods will eventually lift, I feel calmer and more in control.
In 2014 I started a part-time distance program for social work and completed the first year. But it wasn’t to be. I got a cold over the 2015 holidays and suffered the worst fatigue and brain fog I’d ever known. At the time I was just starting to look for a social work practicum placement. There was no way I could commit to working 15 hours a week out of my home. For the second time, I had to withdraw from school.
I felt completely overwhelmed at the outset of my fatigue relapse last year. First, there was the emotional reaction to a new situation: anxiety about whether it was here to stay, frustration that life was about to get more difficult, and grief at the prospect of losing what abilities I still had. Secondly, there was the practical challenge of figuring out how I would cope, like what new treatment options to try or how to manage my daily routines and responsibilities. Lastly, I faced the impact of a relapse on my relationships, such as the increased caregiver burden on my partner, and feeling less able to be present with family and friends.
My relapse brought me back to the beginning of my illness journey and how I coped after my diagnosis. I was able to use many of the lessons that had been learned the hard way the first time around. In essence, what I have learned is that I have the power of choice over what I focus my attention on each day. Through challenging negative patterns of thinking, being present, taking in the good, and pursuing an enjoyable hobby, I try to emphasize what enriches my life and let go of what doesn’t. Of course, there are always bad days and I don’t believe any amount of positive thinking frees us from ever experiencing difficult times. I personally have found, however, that changing my worldview has dramatically lessened the amount of suffering I go through during relapses and has improved my quality of life. I spent that winter using the time to learn new things. I taught myself calligraphy, I read, and I wrote more often on my blog.
That spring, my energy began to slowly improve. I found a kind of peace in accepting that whatever I do next, needs to allow me to work with my body and not against it. I think that’s why blogging and writing have ‘clicked’ more for me now than when I first started. I have found that grieving for your old life and finding acceptance in your new life is an ongoing process, not a one-and-done kind of thing.
Being at home allows me to respond to each day as it is. I’m fortunate to be able to stay at home. I sleep in late because without ten hours I am a brain-fogged zombie. I can’t type because of shoulderpain but I can use speech recognition software. I stretch, do gentle exercise, walk, and make sure I move around during the day. I balance my activities with self-care, which is how I am able to live more fully, even with fibromyalgia.
In the summer of 2015 I felt well enough to finally plan my (fibro-friendly) wedding. On a beautiful August day, I married the man I’d fallen madly in love with eight years earlier and who has been my saving grace through this whole journey. He didn’t blink when it came to assuming caregiving responsibilities – he does the housework, the laundry, and the dishes on top of his full-time job. He is always understanding when we have to change plans or just stay at home. Most of all he is so supportive. He celebrates the small accomplishments of my life without ever making me feel ‘less than.
I’m grateful for how I’ve grown through encountering all of the challenges that come with chronic illness. Learning mindfulness meditation and focusing on the present has given me a more helpful perspective. I’m a happier person when I remember to ‘stop and smell the roses. I feel like I’ve become more patient, more adaptable, more assertive, and more accepting than I was before fibromyalgia. I’m proud of making it through every day, especially on the tough days where no amount of self-care stops your symptoms, and you just have to hold on to the knowledge that it will pass. Everyone living with chronic illness should be proud of the strength they have developed to manage daily life.
My new motto is something I read shortly after my diagnosis – “It’s not the life you imagined, but it’s a good life nonetheless.” It’s something I hope for myself and everyone who lives with fibromyalgia.
Like an ‘invisible illness, Fibromyalgia is difficult to diagnose. The symptoms of Fibromyalgia overlap with many other chronic pain conditions, which is why receiving an official diagnosis is often problematic.
If you have Fibromyalgia, you will experience widespread pain. This may be felt throughout the entire body or could be worse in certain areas, such as the back or neck. The pain is likely to be prolonged and unpredictable; there will be times when it is more severe than ever before.
The discomfort caused by Fibromyalgia has been described as an ache, a burning feeling, or as a sharp, stabbing sensation. Most sufferers feel extremely sensitive to pain, so even the slightest bump can feel excruciating, and the intensity will last far longer than it would for a non-sufferer.
It is not uncommon for sufferers to experience the debilitating symptoms of Fibromyalgia for many months, sometimes even years, before they are formally diagnosed with the disorder. Sufferers will often find themselves visiting many medical specialists and still be no closer to knowing what exactly is causing their symptoms.
The main reason for the confusion and the misunderstanding is exactly that – confusion and misunderstanding. Many members of the medical profession openly admit to being baffled by this long-term complex condition.
Fortunately, there is no shortage of knowledgeable medical experts who can help diagnose Fibromyalgia and help to treat and control the pain. A GP will play an important role in caring for a person with Fibromyalgia. He or she can help to determine the best treatment plan, depending on the severity of symptoms.
Patients with Fibromyalgia often have other ailments too, including irritable bowel syndrome (IBS), headaches, and jaw pain. A doctor will know how to deal with each of these or recommend another healthcare professional who can help.
As Fibromyalgia has numerous symptoms, no single treatment will work for all of them. This may lead to many medical professionals being involved in the care plan, including a:
Rheumatologist: This is a specialist in musculoskeletal and autoimmune diseases, such as arthritis and gout. Although Fibromyalgia is not a form of arthritis and does not cause damage or inflammation to joints, muscles or other tissue, the symptoms are very similar.
Neurologist: A neurologist treats diseases of the brain and central nervous system. Many, but not all, understand Fibromyalgia. The pain from Fibromyalgia is what typically prompts an appointment with a neurologist who can help prescribe the correct medication to control it.
Psychologist: The distressing symptoms of Fibromyalgia and the feelings of isolation it can result in often lead to patients being referred to a psychologist who can help support with mental health problems, such as depression and anxiety.
Pain Management Specialist: The pain caused by Fibromyalgia can impact heavily on a person’s life. Patients may be referred to a specialist pain clinic where a team of physical and occupational health therapists, as well as specialist nurses, can help to treat overall symptoms.
Finding the right medical specialist who understands Fibromyalgia and knows how to treat individual cases can take time. There are an increasing number of experts who can offer the right care and support to help reduce pain, so do not be disheartened if you feel like there is currently no light at the end of the tunnel.
As experienced Fibromyalgia lawyers, we act on behalf of sufferers across England and Wales. If you now suffer from chronic pain as a result of an accident or trauma that was not your fault, then we can help you to claim compensation.
We understand that no amount of money will make your pain disappear. However, it can help you to live a more comfortable life alongside it.
If you would like to speak with a member of our approachable and friendly team about bringing a Fibromyalgia compensation claim, then call us on 0161 737 9248 or fill in our online contact form. We look forward to hearing from you.
I was involved in a road traffic accident following which I initially suffered from a whiplash injury with pain to my neck and back. It has now been 9 months since the accident and the pain has spread so that I have pain all over my body. I am convinced that I am suffering from fibromyalgia as I seem to suffer from the majority of symptoms in addition to the widespread pain including disturbed and unrefreshing sleep and loss of concentration. The pain has reached the point where I had to give up my job!
I went to my GP, presented my concerns and a tender point test was performed. Unfortunately, only 4 tender points presented with pain led my GP to be of the opinion that I was not suffering from fibromyalgia.
Bearing in mind that I fit the bill for a diagnosis of fibromyalgia according to the other diagnostic criteria, is it still possible that I am suffering from fibromyalgia despite ‘failing’ the tender point test?
The tender point test was developed by the American College of Rheumatology (ACR) in 1990 as a diagnostic tool for diagnosing fibromyalgia.
Over the years it has become apparent that many primary care physicians such as GPs are unable to perform the test correctly. This has to lead to some GPs missing an otherwise clear diagnosis of fibromyalgia.
This was one of the reasons that the ACR developed a further set of guidelines in 2010 that give an alternative route to diagnosing fibromyalgia without the need for a tender point test.
It is therefore certainly possible that you are indeed suffering from fibromyalgia despite your GPs medical opinion. However, that is a diagnosis that only a medical professional can make. You may want to ask your GP to consider the 2010 criteria or refer you to a rheumatologist.
Fibromyalgia and celiac disease are two debilitating conditions that prove to be extremely difficult to live with. Some symptoms of both conditions overlap and are very similar. In this blog, we look at the connections between the two conditions and how they may be related to one another.
Fibromyalgia is a complex, long-term chronic conditionwith a multitude of different symptoms, including widespread pain all over the body, and without a single known cause. Many people with fibromyalgia have digestive disorder complaints. Most commonly they are told that these are caused by Irritable Bowel Syndrome (IBS). The symptoms of IBS include alternating diarrhea and constipation; nausea; bloating and wind; and extreme tiredness – the same symptoms of celiac disease.
Celiac disease is a serious autoimmune disorder whereby the body mistakenly attacks its own tissue seeing it as a foreign substance. When a person with celiac disease eats any food containing gluten (the protein found in wheat, rye, oats, and barley), the damage is caused in the small intestine.
It has been reported that gluten can lead to chronic pain conditions like fibromyalgia and that some of the symptoms of the celiac disease resemble the symptoms of fibromyalgia. These include major digestive disorders; stomach ailments; chronic fatigue; headaches; widespread pain; and mental fog.
So, indications would suggest you could be presented with many of the symptoms of fibromyalgia and be suffering from celiac disease. This similarity can make gaining an accurate diagnosis difficult.
There are a few key differences between the two conditions, however. First, the celiac diseaseonly flares up when you eat gluten. It is diagnosed by a blood test and biopsy of the small intestine during a gastroscopy. The simple treatment of it is a completely gluten-free diet.
Secondly, there is one aspect of fibromyalgia that makes it distinctive. Pain occurs in eighteen specific points around the body and gets worse when someone applies pressure to these same areas. This makes it possible to distinguish fibromyalgia from other chronic pain conditions. A doctor can tell if you have fibromyalgia by performing a diagnostic test based on these ‘tender points.
Research has revealed that some patients who have adopted a gluten-free diet have seen their symptoms of fibromyalgia and IBS disappear or dramatically improve but there is currently insufficient data to substantiate this.
If you are a fibromyalgia sufferer and are experiencing symptoms associated with celiac disease as mentioned above, it is advised that you visit your local GP to discuss in further detail.
