There is this impression that a lot of people do not know about Fibromyalgia or understand it in the general public. I wrote an article in 2020 about How Much Awareness is Out There that suggested there was more than we think. I am going to post the reprint on that. I assume there is even more awareness now via all the 800 drug company commercials.
Fibromyalgia is a syndrome primarily characterized by widespread chronic muscular pain, fatigue, and insomnia. It is difficult to diagnose syndrome and equally difficult to understand. People who suffer from the condition often fear they are being treated as hypochondriacs or are perceived as chronic complainers and lazy. They often fear to disclose they have the condition to their employer and co-workers because they might face discrimination or a hostile work environment. A decade ago many people would be hard-pressed to say they had even heard of the condition. How far has FM awareness come today?
According to a survey done by the American Chronic Pain Association in March 2012 92% of the general population in America has heard of Fibromyalgia. This is a substantial increase in FM awareness in the general population, however, the survey also suggests people do not understand the difficulties involved with everyday tasks. For example, people were asked to indicate activities they believed people with FM would have difficulties with and people with FM answered the same survey. There was a little discrepancy in the category of ‘do yard work or clean the house’ but there was a significant discrepancy in categories like ‘watch a movie or ‘drive a car’. The reasoning for this is no doubt that pain must be caused by doing activities but in cases like FM, it can be just as painful to be still or in one position for too long.
When it comes to who can get FM the same survey suggests people are not too clear on the idea. 44% said they were not sure who was impacted by FM and one-third said older women. When looking at FM prevalence the majority of FM sufferers are indeed women, however, men suffer from the syndrome as well. Diagnosis can come at a young age but there is an increase in the prevalence of the condition in aging populations.
What is most interesting about the ACPA survey is how the general population perceives those who suffer from FM versus how they perceive themselves.
The study states that people with FM believe society sees them as ‘complainers’, ‘weak’, and ‘lazy’.
Whereas the results indicate the general population sees them as ‘courageous’ and ‘strong’.
There are plenty of reasons for FM sufferers to have this impression. People who have had FM for over a decade have been exposed to doctors who have denied the existence of the condition or refused to treat them. They have been told they were ‘stressed’ or it was ‘all in their heads. This leads, unfortunately, to an unwillingness to disclose details to health professionals for fear they will be labeled as hypochondriacs. Others fear they appear as chronic complainers because their health concerns come up in everyday life so often. They fear co-workers might believe they are using their health as a reason to ‘get out of work’ or as ‘an excuse’. They may have dealt with hostile work environments or family members who have had difficulties coping with having a loved one with the illness. They also tend to believe society, employers, and family all have expectations of them, of anyone, that they are not fully capable of living up to anymore and the guilt of that is a heavy emotional burden. All of this leads to the general impression that the average person would have a negative view of their condition. Whereas the general population sees people coping with a chronic pain condition, perhaps suffering financial and emotional burdens because of it, and yet still able to get through daily life and function.
Pain may be a private experience and while it can be doubted by the outside observer we, as human beings, have the capacity to empathize and as such, we can grasp the struggle someone is going through without having to feel the pain ourselves. It takes a great deal of strength and courage to cope with a complex, chronic pain syndrome like FM, and clearly, people are able to empathize with that struggle. It is profoundly encouraging to see that result in FM awareness even if only to bring to light to FM sufferers that all people do not perceive them in a negative fashion. Clearly, there is more awareness of fibromyalgia as a chronic pain condition even if the specifics of how that pain affects daily living are not too clear. However, FM awareness as a chronic pain condition is different than FM awareness as a syndrome. Very few people understand the complexity of the syndrome as a whole or the fact that there is a great deal more involved than just pain. Awareness campaigns that bring to light all aspects of the incurable syndrome not only help with public perception, which decreases decimation and bias, but can help push for research and eventually a cure to this debilitating condition.
Daniel J. Clauw, MD,a rheumatologist and professor of anesthesiology and medicine, and director of the Chronic Pain and Fatigue Research Center at the University of Michigan focused on the nature of pain experienced by patients with fibromyalgia and how clinicians can treat it. Carmen E Gota, MD, of the Cleveland Clinic, stressed the importance of exercise and tailored patient care.
Clauw looked at three areas of pain, centralized pain, peripheral pain, and peripheral neuropathic pain. He states opiates are limited. “’ The body’s natural opioid production system may be impacted in fibromyalgia, so giving them opioids could be fueling the fire,’”
I have written articles about how opiates tend not to be our best choice, two being Fibromyalgia and Opiates for pain: Helpful or hindering?, Opiates and fibromyalgia– a treatment for severe pain but the brain works against us so there is some suggestion that opiates and FM might not get along.
Instead, he recommends tricyclic compounds, serotonin and norepinephrine reuptake inhibitors, and gabapentinoids for centralized pain.
Gota’s talk, on the other hand, looked at non-medication treatments such as exercise.
“In 2010, about 80% of patients were taking analgesic drugs and 52% were taking central acting drugs,” she said. “Over time, we have seen increasing use of [central nervous system] CNS drugs. However, despite the increasing use of centrally acting drugs, we do not see a decrease in the use of analgesics.”
Her recommendations are a strong emphasis on exercise but also CBT; Physical therapy, acupuncture or hydrotherapy for example; and meditation. Exercise has the most consistent impact.
This is one study I posted on Fibromyalgia and exercise
Both Clauw and Gota stress patient management over and above trying to categorize the patient into a diseased state.
“It is important to know your patient because that will determine how you are going to treat your patient,” she added. “Establish a network of collaborators who will help treat your patient, including primary care providers, physical therapists, psychologists or psychiatrists, and sleep, and medical experts.”
And this is… nothing new at all. They have been saying this for years now. Exercise. No opiates. Same old same old, but they seem to be suggestive of comprehensive treatment options to replace the lack of opiates. Medication, psychologists, sleep experts, physio, and so forth. A comprehensive method is indeed needed. And they are right that symptoms need to be attacked and modified where modifications can be done.
At a recent appointment with my naturopath, to the wonderfully named Dr. Love, the topic of recurrent muscle pain flares came up. Anti-inflammatory interventions and nervous system calming remedies had not broken the cycle of muscle pain I experience. My pain predominantly occurs in my upper back/shoulder blades on either side and my glute muscles/SI joints. Even though I stretch and strengthen, which helps, I have not broken out of these painful cycles. My naturopath asked what my osteopath had to say about whether my muscles are particularly restricted and not very responsive to treatment. My osteopath said that my thoracic spine and pelvis area were particularly restricted.
Dr. Love explained that tightness and restriction can occur when muscles are contracted for a long period of time, leading to adhesions in the connective tissues. Adhesions are a form of scar tissue that causes connective tissues to stick together in a way that restricts normal movement and function. There is evidence that adhesions in the fascia (a network of connective tissue throughout the body, like a soft skeleton) can contribute to fibromyalgia pain.*
Dr. Love felt that it might be helpful to give me some support for breaking down adhesions, to complement the work of my osteopath and physiotherapist. She prescribed a homeopathic remedy with two ingredients. The first was theosinaminium, which is a derivative of mustard seed oil. It is used as an internal solvent for dissolving scar tissue, fibroids, tumors, and adhesions.** The other ingredient was silicea, which “can stimulate the organism to re-absorb fibrotic conditions and scar-tissue”.***
In the last month, I have experienced decreased nighttime back pain, and greater resiliency in my upper back/shoulders (for example, I have been able to type this entire post without pain, when usually I use voice-t0-text technology). I am not sure if this supplement is the only reason, but since it has no side effects, I am happy to continue to take it to see if it will help me further!
As I have been opening my mouth more and more about Fibromyalgia, The Crusade, awareness, and the general passion of my life to anyone and everyone that will listen I keep having positive experiences! Where I used to get glazed over expressions of distracted disinterest I am now finding myself bombarded with questions of genuine curiosity. I don’t know if the difference is me or Fibro. No longer mopey and sad-faced as I mumble that I suffer from an obscure chronic illness few have hardly heard of or know much about, I can only surmise it’s because I am now chipper and excited as I delve into my cause. I am a much more interesting and engaging person to talk to as I summarize this strange neurological condition that results in severe and widespread pain, cognitive confusion, and horrible insomnia. The cause is unknown but it affects up to 6 million people in the USA alone and is quite debilitating (that’s my quick summary, by the way).
A few weeks back I was on the phone with GoDaddy. Abacus girl was attempting to navigate the world of domain names and websites and the rep started asking me about Fibromyalgia. As I was explaining what The Fibromyalgia Crusade is all about he was asking sincere questions to further his understanding. It was amazing! I clearly taught him more about Fibro than he did me about domains (that’s okay, he did what I needed him to do), and at the end of our conversation, he thanked me for my knowledge, educating him on something he knew nothing about. Then the topic of what we did for a living (haha) came up while I was serving Jury Duty. The jury and I were waiting in the deliberation room and I told them I was starting a health awareness campaign. They asked me what for and when I told them, two ladies quickly took over the conversation and started filling in the rest of the group as to what Fibromyalgia is! I was shocked and thrilled! Of course right as we were getting to the meat of the matter the bailiff came in to lead us back to court, but it was awesome nonetheless. Then yesterday I called the phone company to figure out why my bill had gone up. When she inquired about my internet usage I told her I was a blogger and online for like 10 hours a day. She asked what I blogged about and when I told her she was thrilled! Her sister-in-law and best friend both have Fibromyalgia and she jotted down The Chronicle’s web address to share with them. All of a sudden the world seems to care or at least want to know more about Fibromyalgia!
We have to hit this hard, my fellow crusaders! The world is listening now, and we need to start singing and not shut up until life with Fibromyalgia is manageable, we are no longer blamed for our illness and the general public has at least a common knowledge of it like they do M.S or Lupus. The more we talk, the more others know and the more they know, the more seriously we are taken. It is going to take HUGE amounts of education, fuss, flurry, and promotion for us to turn acceptance and comprehension around but we can do it! So start singin’… Start talking to anyone and everyone that will listen. But I believe the way we go about it is just as important as actually doing it. Take your personal experience out of it. Refer to yourself as part of a campaign to bring awareness to an illness you actually suffer from and then keep it general! Educate them with a brief summary that you are comfortable pulling out of your back pocket on demand and if you are met with doubt, skepticism or criticism kindly find a way to remove yourself from their presence and run away as fast as possible! Don’t take their ignorance personally, let it dampen your passion. Then try again with the next encounter, and just keep promoting, educating, and furthering our cause. As we all know Fibromyalgia is not just going to go away, and we are not going to stop until something gives, for the current state is unacceptable. So open up that throat, caged bird, and sing! Sing of a life of pain imprisonment and medical frustration. Sing about the loss of function and limited treatment options. Remember, we are on a crusade and we are going to win!
I am launching THE FIBROMYALGIA CRUSADE! I am a Fibromyalgia patient, not a doctor, scientist, researcher, or Ph.D. I am a real woman living a real-life with a real disease that receives little to no respect or understanding from the world at large. I became ill in 2005 and have devoted the last 5 years of my life to overcome the debilitating and miserable reality that is living with Fibromyalgia.
My medical history is complex. My journey is fraught with as much failure as success. I have worked harder than I ever have for anything in my life to regain a quality worth living, and with an amazing support network is amazed to say that not only do I survive, I thrive! But my heart is breaking…
I started this blog, “Chronicles Of Fibromyalgia”, last March. It was a way for me to dissect and therefore begin to understand how life had deposited me in the strange and foreign land I found myself residing in. I also dream of a career as a writer and utilize the blog as an outlet to exercise those skills. But I was private, I was unsure. I was embarrassed by the truth of my reality and kept it to myself, all the while progressing emotionally and physically in leaps and bounds as I began to unravel the tangled ball of yarn that my life had become.
And then at the end of July, mere days before my 34th birthday, I had 2 strokes. I nearly died, came within a hairsbreadth, but have miraculously recovered and with treatment am going to be just fine. This near-death experience woke me up! It renewed in me a responsibility to my fellow man, Fibromyalgia–sufferers specifically. I stopped caring about acceptance or judgment and went public with very intimate and private details of my struggle. I utilized Facebook and my blog as a way to reach out to other normal everyday folks trudging through the grim and dismal misunderstood darkness that each day is when one lives with Fibromyalgia.
The response has been overwhelming! People have been crawling out of the woodworks to link up and gain support, a sympathetic ear, a shoulder to lean on that truly understands how awful life can become when one is forced to live sick in a world of healthy expectation. I have knitted together a small network of fellow fibrates that are all singing the same song, just to a different tune. As I have become aware of the story after story following the same devastating outline I have become enraged! There is too much loss and suffering and ignorance surrounding this condition. With every beat of my heart, I want to change the reality of living with Fibromyalgia. Take it from a doubted and questioned condition and give it the validity it deserves. Making people recognize the suffering and loss and devastation is indeed real, as real as the air we breathe, and I believe if the THOUSANDS of Fibromyalgia patients out there came together, stood strong as 1 voice, it can be done!
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.
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.
