Dear Fibromyalgia

Category: Chronic Fatigue Syndrome

A detailed guide to Chronic Fatigue Syndrome (CFS), including its symptoms, causes, and effective treatment strategies to improve energy and well-being.

Realities of Family Planning with Chronic Illness

My husband and I have decided the time is finally right to start family planning – or as right as it ever will be! For most (hetero) couples, this might be as simple as throwing out the birth control pill pack and spending more time in the bedroom. Of course, many otherwise healthy couples face fertility challenges that shouldn’t be minimized. But for anyone living with chronic illness, the starting point for trying to conceive may be far behind the average couple.

In my case, I live with fibromyalgia and pelvic pain, including (suspected) endometriosis. My monthly pain from the endometriosis – throbbing cramps – has worsened in the last few months – up to 5-6 out of ten on the pain scale, 15 days a month. My OB-GYN and I decided the time was right to do a laparoscopy to officially diagnose the endometriosis and to remove the painful lesions, with the goal of reducing my overall pain. If my pain is reduced, this is my best chance to endure going off of the birth control pill, which has been my endometriosis treatment for several years. This is why the time will be right for us to try to conceive, or as soon as my laparoscopy is scheduled anyway. It’s strange that my pain has decided the timing instead of life circumstances, but that’s part of being a spoonie, for me at least! If I do have endometriosis, then I may also face fertility challenges, but we will not know this for a while. I’ll cross that bridge when I get there.

The second significant challenge is that the medications I am currently on pose potential risks to a developing fetus. In these cases, the risks are weighed against the benefits for the mother -being exhausted, stressed, depressed, or in-pain Mom is not healthy for the baby either. I have to completely come off of Lyrica, or pregabalin, (FDA approved for Fibro) because a recent study suggests a high risk of birth defects. I have found Lyrica helps with my autonomic nervous system symptoms during flares – goosebumps, chills, temperature intolerance, racing pulse, restless legs, head rushes, increased salivation, etc. Coming off a potent medication is difficult, and often involves worsening pain, sleep, and mood, among other rebound effects. Because my laparoscopy is several months away, I am going to taper off my Lyrica very slowly, over three to four months. Hopefully, this will reduce any rebound symptoms. I’m nervous about what my fibromyalgia will look like off of pregabalin.

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I have been taking a long-release tramadol prescription called Tridural. My pain management team believes that the risks of tramadol for the baby – dependence on the opioid activity of tramadol – are outweighed by the benefits to me in terms of pain control. However, I am on the highest Tridural dosage, which has to be taken continuously at the same dose, once a day. So, I am switching to short-acting Tramadol, which you take every 4-6 hours. The goal is to take less Tramadol overall this way because I can modulate the dose according to my daily pain level. On low pain days I take less, on high pain days I take more, with the hope of taking less overall. I recently made the switch and I am having a tough week. I have had difficulty sleeping, stomach upset, and low energy. This is mostly due to trouble getting used to how much or how often I should take the new tramadol. I like having more control however and am hopeful the side effects will subside soon and I will find a good routine.

A further significant issue will be sleep. Having ten hours of sleep is the foundation for my functioning. A bad sleep causes all my fibro symptoms to flare. I take a low dose of doxepin (Silenor)- a tricyclic antidepressant – to help me sleep, with occasional use of zopiclone for nights before important commitments. My doctors are still considering what my sleep prescriptions might be during pregnancy, but zopiclone is generally discouraged. I take a number of supplements like 5htp, melatonin, magnesium, and valerian, which have helped my insomnia a great deal. I will have to come off of all of these too. I am definitely anxious about this part of pregnancy! I am trying a cognitive behavioral therapy for insomnia program by using a book called Sink Into Sleep: A Step by Step Workbook for Reversing Insomnia by Dr. Judith Davidson. Conquering the anxiety I have about the consequences of a bad night’s sleep is definitely helping, by using relaxing sounds and guided relaxation tapes on apps like White Noise and Insight Timer. I take the perspective that all I can do is create the best environment for sleep at the present moment and worrying about what will happen tomorrow is unhelpful. This isn’t a perfect strategy but it is helping me to reduce nighttime wakings now and will hopefully help during pregnancy.

Finally, in order to reduce the pain of pregnancy, I need to focus on strengthening and exercise as much as possible. I already have conditions like sciatica and SI Joint pain, which are common during pregnancy. I don’t have to tell you exercise is difficult during a chronic illness! I have a wonderful physiotherapist (physical therapist) and athletic therapist who designed a gentle strengthening program for me. I found breaking it up into arms, legs, and core exercises that I do on different days helps me to actually do my routine more regularly. However, the unpredictability of each day means it is hard to keep a regular exercise schedule. After three or four flare days in a row, it’s hard to get back into a routine. It’s hard to even call it a routine! However, I know that every day I put in now is going to help during nine months of pregnancy. But to top it off, I am concerned that the reduction in pain medication and associated side effects of tapering off are going to further complicate my exercise goals. It is going to take all of my determination to get stronger!

I hope to continue to share this journey here. It helps me to process and plan for pregnancy. I also hope it raises awareness about the reality of family planning with chronic illness. Ultimately of course I hope it offers shared experiences and support for other hopeful fibro (or chronically ill) Moms-to-be (and Dads too)!

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08/24/2022
The Start Of Chronic Fatigue Syndrome & Fibromyalgia

A few months later my husband graduated with 2 BS degrees in Finance and we were ready to start our life for real. During the first 5 years of our marriage, he had been completing his undergrad full-time and working full-time. This had left us a bit distant and out of touch with each other. We were really looking forward to some re-connecting and had scheduled a week of “vacation” together while he graduated and we moved. We were living in San Francisco and prior to graduation, he had secured a new job, in his field, on the Peninsula. I had decided to buy myself a dog as a present for his graduation and was really ready for life a bit slower, easier, and cheaper than city living offered.

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So in my type A+++ fashion, I set out to do all of this in 1 week. Bam! Enter my own personal hell week. Do you know when they talk about a “trigger event” for Chronic Fatigue Syndrome & Fibromyalgia? Well, here is mine: The week he graduated we had a large graduation party with tons of out-of-town family and friends, moved 2 days later, and got the new puppy the day after that. Then surprise! My grandfather passed away so I had to fly back to Illinois for a whirlwind funeral, all during the week my husband and I were supposed to be getting reacquainted with each other. Oh, how many times we have talked about if we had just gone to Mexico and taken a real vacation instead of this madness, maybe I would not have gotten sick…

But I have never felt the same since then. I started having lots of physical pain and exhaustion. I felt like the muscles in my legs were separating from the bones and like my abdomen was going to either implode or explode, but could not tell which. I could not make it to work on time or through a whole day of work. I felt like I was moving through quick-sand. I would sleep 10 hours a night and wake up exhausted. I was in hell. I ached everywhere and felt like I was constantly on the verge of getting the flu. I was emotionally and physically in chaos. I immediately stepped down from my executive position and went into a 4 day a week assistant-manager job. I knew after the struggle with pancreatitis that whatever this was, I could not be focused on my career as well. My solution was to stop taking Tricor, the triglyceride medicine I had been put on after the side effects from Lopid were discovered. Even though I had been on it for a few months I was convinced what I was going through was another adverse reaction but to no avail. I saw doctor after doctor and test after test kept showing I was as fit as a fiddle. No one could tell me what the hell was wrong with me! I was put on anti-depressants because, according to one doctor, I was depressed, nothing else. I existed in this ebb and flow of crash then push, constantly feeling awful and getting no answers or relief from the pain and exhaustion. I did find one doctor who diagnosed me with Chronic Fatigue Syndrome and Fibromyalgia and another that ran all the tests to confirm that looming and vague diagnosis of exclusion. But there was no real treatment and certainly no cure! Nothing more than some old outdated heavily-sedating medications. Nothing modern medicine had to offer, and I was quickly disintegrating.

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08/21/2022
When pain slows you down

There are times with Fibromyalgia that I exceed my walking limits. It is actually difficult sometimes because the limit changes. It can be a short distance one day and a decent distance the next.

There was a time when I had to run all over campus to get professors to sign my thesis to get it processed. I ran around everywhere looking for everything. Too much. I was in immense pain. I would sit down for a break but it was difficult to get up from that break. I could only walk with a slow shuffling pace because I had gone so far beyond my limit. I got honked at crossing the street, going as fast as I literally could. Made me feel horrible. I get I looked healthy. But I sure wasn’t feeling like it then. I ended up having to get back to my department because I couldn’t handle more. One prof on my team had to help me out, something I had never asked for before-help. Glad he did, though. There was no way I was getting anywhere at all.

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This has happened before. Many times actually. Once my spouse and I went to go see the fireworks a few blocks from our house was one time it was a short duration flare. Maybe a 20-minute walk. I made it there. But it was a lot of standing to watch the show. So on the way back, my pain increased exponentially and my pace slowed to a crawl. I think it embarrassed my spouse since we were getting a lot of looks. What is wrong with her? She looks fine? It was an agonizing, and long, walk home for me.

Then there was the time I spontaneously developed a foot problem. It is possible it was plantar fasciitis or something else but caused by FM I have no doubt. It hurt to lift my foot to walk. To press it down with weight. The tendon itself in the bottom of my foot hurt. So I shuffled little shuffling steps for more than a year. I think it lasted 2 years before it went away. Flares up when I wear sandals. Or shoes I shouldn’t. Got a lot of comments on that as well. I couldn’t really walk fast because every step hurt.

Fact is, pain with FM can make us more visible. But when it does it just garners attention. This sort of What is That About? Attention. Because they see no injury. They can’t tell what is wrong. They just look at you funny. Or think you are moving slow on purpose to get in their way or slow traffic.

We, on the other hand, are stuck. Literally stuck wherever we happen to be. With the sole purpose in our minds of a) find a place to stop and rest b) get home as soon as humanly possible. We know we will make it there by inches if we must but it will be painful. And we will ignore the looks. And focus on every single step. Step by step, towards that goal.

Stare all you want. Our mind is on the finish line or at least a bench somewhere where we can rest the pain a bit. I am pretty single-minded when in that much pain. Just get to the car. Just get to the house. Just get to that bench. But I notice the looks. Hard to miss.

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08/18/2022
So you have a chronic illness. Is that a disability?

If it means significant restrictions to your daily activities, then, according to medical and government guidelines, yes, you have a disability. This may challenge the ability stereotypes you might have absorbed from the media, where disability is usually linked to the need to use a wheelchair because of a spinal cord injury or limb impairment.

This might get you wondering about what exactly the definition of disability is, how do we usually understand it and what does that means for how we value ability/disability. Mainstream medical models say the problem lies within individual bodies. Disability advocates say the problem lies in our inaccessible and ableist society. I wanted to post an excerpt from my instructor on disability studies to clarify these models and meanings:

The medical model of disability positions disability as an individual physical problem.

The charity model sees disability as an individual personal tragedy that should elicit our sympathy. Dossa (2005) refers to this as the “personal tragedy model” of disability. The “supercrip” model positions disability as an individual challenge over which someone can triumph by dint of hard work and elicits our admiration. In the moral model, the inherently negative stereotype of disabled people, which as Kumari Campbell (2008) points out links to self‐hatred, is something to be borne solely by disabled individuals. What all these models have in common is that they individualize disability, problematize disability, and locate disability in individual bodies that are defined as wrong (Wendell, 1996, p. 360). These all serve “other” disabled people.

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Wendell believes that none of these models serve disabled people. She explores and explains the social model of disability as a more useful alternative. This model, which came out of the disability rights movement turns the focus away from disabled people and disability and onto the able‐bodied and ableism. Framing disability as a social justice issue means that the difficulties that face disabled people are located within disabling social structures and attitudes.

The social model arose through the disability movement’s critique of responses to the care needs of disabled individuals. By rejecting the medicalized or therapeutic model of disability in which power lies with professionals and disability is pathologized and individualized, the category ‘disabled’ was transformed into a collective political identity. Disability is understood as being constructed not through physical or mental impairment but through social, cultural, and environmental barriers such as inaccessible education, housing, public spaces, and employment environments; discriminatory health and social service systems; absent or inadequate benefits; and negative cultural representations. The social model requires us to engage with the marginalization and exclusion that disabled people are forced to face in disabling environments and challenge medical and social responses that enforce dependency.

What does it mean for our practice and for us as people, if we understand disability as individual rather than social? How is our practice impacted if we see most disabilities as resulting from individual failure to properly manage one’s life and avoid risks – including the relatively new requirement that parents/ mothers use genetic testing or amniocentesis to avoid having a disabled child? Alternatively, if we work from the social disability model and “value the differences of people with disabilities…what implications does that have” (Wendell, 1996, p.8) for our practice?

Most commonly, doctors are given the right and the authority to decide whether or not someone is disabled and to define the nature of the disability. What a doctor decides can and does determine access to benefits and entitlements. As Wendell points out, defining disability serves a larger political purpose. It reinforces the idea that disability is located in individual bodies (or brains); it makes disability into a problem of the disabled person, and it reinforces the power of doctors to pronounce on disability. But what then happens for people with unrecognized, undiagnosed, or undefined problems? Where does illness, especially chronic illness, fit into disability definitions?

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08/15/2022
Learning about Disability

I’m taking a disability studies class this term as part of my social work program. I study part-time, online. I thought I would post some of my reflections on reading articles for the class. People living with FM and CFS/ME don’t always think of themselves as ‘disabled’, but the way the world is organized and the way these conditions affect our bodies certainly mean we do live with a disability.

Reflections on Eli Clare’s (2001) Stolen bodies, reclaimed bodies:

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I found that this poetic article illuminated the physicality of the experience of living with a disability in a way that I had never encountered before. Weaving the author’s personal experiences along with disability theory was incredibly effective in making the central point of the article. Clare argues that the disability rights movement identifies the social and material conditions that oppress disabled people as the locus of change, rather than the individual’s impairments of the body. However, in so doing, the body and somatic experience often gets lost in progressive disability discourse. Clare makes the point that our bodies are a key part of our identities, and mediate our engagement with the external world.

I have never thought about the social model of disability in these terms before. It makes sense to me, though, both intellectually and viscerally. I identify as a person living with a disability, and one component of my experience is chronic pain. Chronic pain, from my perspective, never fits neatly with the assertion by the social model of disability that the only location of problem and change in society. My relationship with my body, the pain that I feel every day, is also a site of struggle, and a challenge in my life, alongside the social oppression that I face as a disabled person. Disability, then, for me, is about both a relationship with myself and the external world. This article provided me with new ways to understand the internal and external realities of disability. Clare connects one with the other, as part of the disability rights movement; “without our bodies, without the lived bodily experience of identity and oppression, we will not truly be able to reconfigure the world”

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08/13/2022
How do fibromyalgia and chronic illness upend your life?

You’re sitting in the doctor’s office, being told you have an incurable illness. Maybe you have to leave your career, or pull back on your workload, with set accommodations. You can’t live up to being the involved wife, parent, sister, or daughter you planned on being. Travel becomes difficult, athletic ability falls off, and favorite hobbies or pastimes become more challenging. But mostly you just don’t feel like you. A period of grief ensues over your previous life, and it crashes over you in waves.

Eventually, you start asking the big questions. Can you live a good life despite pain? How do you find meaning again amidst all the change?

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I don’t have THE answer, but I did find some answers. I had to understand what I’d found meaningful in life Before Fibro (B.F.). And then I had to find the meaning behind the meaning- why is something sustaining, nourishing, enjoyable? Finding meaning is epitomized by the quote “A life well lived is a life fully experienced.”

I was a very career-focused B.F., finding satisfaction in the field of global health (HIV/AIDS prevention and treatment). Once all that stopped, I felt stuck and lost. The one thing I had been certain of, my “calling”, was gone. Making a difference through my career had given me a sense of purpose.

Travelling was my favorite activity. I came to realize that experiencing different cultures and ways of life was important to me because it had made my own worldview expand. Broadening my horizons made me feel vital and alive.

How to replicate that feeling from my couch at home? An answer came surprisingly from the podcasts and audiobooks I listened to during my enforced rests. I found I enjoyed learning about history, as a way to travel from my armchair. (I’m a ). Learning feels like time well spent, whether it’s listening to a historical mystery or an episode of a podcast on ancient Egypt. After all, curiosity keeps your brain healthy and young. What do you geek out about? It can be anything, from an academic subject to a hobby, to DIY project techniques. Intentionally find ways to learn about things you find interesting, from online classes, podcasts, audiobooks, or just connecting with interesting people online and asking them questions. The time that feels spent on rewarding things makes meaning.

Over time I came to see that there is a lot of life to live here, in ordinary life, without globetrotting or being career-driven. I never appreciated that B.F., assuming everyday life was boring and humdrum. But in learning to be mindful and still, I’ve found how much I missed before, and how much being present enriches my life. Being on autopilot, or always looking ahead, meant I whizzed past sunsets, birdsong, long hugs, savored meals, belly laughs and so many other moments. Connecting to the beauty and wonder all around us via our senses is possible, even while in pain, even at home. Finding ways to feel that makes life more worthwhile. Mindfulness as a practice, or just realizing the need to be present, means showing up for moments big, and small. Choose to stay with an experience instead of reaching for a distraction.

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And the difficult experiences of chronic pain, surviving the limitations, still mean that you are living fully. I’ve grown in strength, resilience, compassion, self-confidence, and patience in ways I never would have before my illness. After all, what else really is the point of life other than to become a better, wiser version of ourselves on this journey? This is another way to have a purpose in life. I’ve come to value growing as a person as one of my most important accomplishments, instead of getting promotions, keeping up with the Joneses, or any of the other markers we are taught to measure our success by. Without fibro, I would have let external factors determine my self-worth. It’s not that I’m grateful for fibromyalgia, or that I’m glad I have it, but I have found a way to make meaning out of it, and find a silver lining. I’m developing as I go; it’s a work in progress, but a worthwhile one.

I’ve written before about the critical importance to our happiness of self-expression and contributing to something greater than ourselves. We are often taught that the only way to do this is to work and be a “productive citizen.” However, there are so many other ways to find connections, such as sharing your story and finding online relationships, to learn from and support others. Writing on my blog and now writing as a freelancer, has transformed my life. Volunteering, supporting others online, teaching, mentoring, and sharing your experience are all ways to contribute, big and small.

Fiction writing has engaged me again in a new way through imagination. (I’m writing a historical mystery set in Niagara Falls during the American civil war when the area was a hotbed of spies and intrigue). Creativity can be a form of salvation, as a craft, art, music, interior decoration, in the kitchen, the garden, on the page, or anywhere else. We shift into an active mode, not passenger mode when creating. Yet we also refrain from intellectualizing, analyzing, number crunching, or any other left-brain thinking. Creativity is about engaging intuitively, emotionally, and symbolically with the world, through self-expression, using the right brain. It’s good for your heart; it’s good for your soul. Don’t disparage it as “unproductive” or unimportant, because it is a meaningful source of intrinsic pleasure. It’s meaningful because it’s a way of being open and engaging with the world around you (sensing a theme yet?), via your senses and interpretations, from your own unique perspective.

We find meaning in our relationships, in our faith, and in our philosophies. But we have to be present, open, and engaged to really benefit from these resources. That doesn’t happen overnight! But tuning in to our senses, our inner strengths, our creativity, our intrinsic interests and sources of pleasure allows us to connect to the world in ways that create and cultivate meaning in our lives. This is a form of strengths-based healing – leveraging your inner resources to create a life fully experienced, and well lived – in spite of adversity.

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08/12/2022
A Woman To Be Remembered for Fibromyalgia

The world lost a woman yesterday.
A boy lost his grandmother, three people lost their mother and a man lost his wife.
This woman was a pistol, tough and strong and a force to be reckoned with.
I grew up with her tales of adventure, living overseas while young and newly married, her husband in the military.
I learned of a day in 1929 when this girl took a shoebox of money she was saving to the bank, to be turned away empty-handed, for her money was worth nothing.

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I recall dramatic and gory stories when she worked as a nurse, the night shift in the E.R.
I ate many holiday dinners at her dining room table and swam many summers in her swimming pool.
I never shared blood with this woman, yet she is the person who gave me one of my mothers. And she too suffered from a silent illness, Lupus.
An illness of shared compassion to us Fibromyalgia patients.
But she braced herself up and raised her family, one of her daughters developmentally disabled and by her side every single day.
She was a woman of courage and strength and integrity, a beauty from a bygone time.
Blessed with long life, part of her will go on.
In the friends, she loved, each child she created.
Birthed and raised and taught right from wrong.
Each life she touched, I.V. she poked or Special Olympics she attended to watch her daughter win gold and silver medals.
That is what goes on.
The memories her loved ones share when brought together as they laugh through their tears, recalling something they did that made her really really mad.
The animation and times of a person with a life well-lived.
Respected and remembered.
Rest in peace, you will be missed.

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08/10/2022
Unspeakable Pain but Were you Hurt Most?

There is a book whose title I will not tell, written by an author that will remain unnamed, that everyone in the whole wide world made such a gigantic fuss about. Hollywood even made it into a movie! And all I heard from everyone I knew was to read this book. It is great! Empowered womanhood! You will love it! They all assured me. So I broke down and bought the darn thing in paperback at Target. Immediately I was turned off, for this woman had been portrayed as a hero, a goddess of unprecedented proportions for overcoming unspeakable pain and triumphing over all her wrongdoers with a transcendent peacefulness.

But all I could see was a woman with an endless bank account and oodles of time on her hands void of any responsibility cavorting around and indulging herself. And I got mad. Actually, I was really really jealous. Because I wanted her life. And I wanted her problems. And most of all I wanted her solution, irresponsible and generously funded self-indulgence! I put the book down after my 6th or so attempt to get into it, fuming and angry as I had been the 5 times I had previously ventured into her world. Did anybody even edit this book? It reads like she turned a tape recorder on and recorded her stream of consciousness, whatever came to mind and published it hot off the transcriber’s desk. Finally, I decided this is not the right time in my life to be reading this book and it went back on the shelf for another place, another journey, a whole other attitude adjustment.

Then irony smacked me upside the head a few times to catch my attention. My complete lack of compassion became glaringly obvious. I judged this woman because her trauma was not worthy of my respect. It was not big enough, grand enough, destructive enough. But it was still her trauma. She had every right to feel what she felt, for if that was as bad as her life had gotten she was a very lucky girl and must not have much to compare it to. She had every right to make millions of dollars off this venture if she is writing what her customers want. Just because this woman had not befallen to a multitude of health problems or natural disasters or an abusive past or anything equally traumatic I judged her. Yet I would not ever in a million years with what I have been through on even my worst enemy. This found me in a particular set of reasoning that made no rational sense. My heart softened and I found empathy and even a little joy in being reminded not everyone suffers so horribly in this thing called life. So go for it girl! Live your life and keep loving and laughing and doing what makes you happy, I begrudge you nothing. I hope she never has to find out about the devastation that comes when life really betrays you and leaves you stripped naked and beaten lying on the floor wanting to die. I can only pray.

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08/09/2022
I am getting my Fight Back

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.

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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 Superwoman to 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.

https://www.teepublic.com/stores/fibromyalgia-store

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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

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Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

07/29/2022
My Experience in the Gupta Fibromyalgia Recovery Program
Causes of FM/CFS: Scientific Basis for the Gupta Program

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.

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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.

How it Works: Brain Retraining

At the core of the Gupta program 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 about crossing 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.

What it Includes: Gupta Program Coaching and Learning Materials

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.

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My Experience: How the Gupta Program Helped Me

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.

How much does it cost?

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).

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store
07/27/2022