Fibromyalgia is a chronic syndrome defined by widespread muscle pain, fatigue, sleep dysfunction, and cognitive dysfunction. Fibromyalgia pain dysfunction involves increased sensitivity to pain known as hyperalgesia for example.
But we all feel hypersensitive to another stimulus as well. And many of us mention things like sound sensitivity and light sensitivity. Well, there was a 2014 study that demonstrated we are indeed sensitive to this as well but because it was an fMRI study it was small. Still, it was interesting to me.
A recent study published in Arthritis & Rheumatology, a journal of the American College of Rheumatology (ACR) shows that people with fibromyalgia have hypersensitivity even if events are non-painful based on Functional magnetic resonance imaging (fMRI) imaging of the brain. Brain imaging reveals reduced activation in primary sensory regions and increased activation in sensory integration regions.
These responses to non-painful stimuli may be the cause of problems with tactile, visual, and auditory stimulation. Patients often do report reduced tolerance to environmental and sensory stimuli in addition to the pain.
The small study included 35 women with fibromyalgia and 25 controls. Patients had an average disease duration of seven years and a mean age of 47. Functional magnetic resonance imaging (fMRI) was used to analyze the brain’s response to visual, tactile-motor, and auditory stimulation. Patients reported increased subjective sensitivity or unpleasantness in response to this multisensory stimulation in daily life.
The results of the fMRI showed patients had reduced “task-evoked activation in primary/secondary visual and auditory areas and augmented responses in the insula and anterior lingual gyrus. Reduced responses in visual and auditory areas were correlated with subjective sensory hyper-sensitivity and clinical severity measures.”
The study concluded there was a strong “attenuation of brain responses to non-painful events in early sensory cortices, accompanied by an amplified response at later stages of sensory integration in the insula,” and these abnormalities are associated with the main FM symptoms suggesting this maybe be linked to the pathology of the syndrome.
Dr. Marina López-Solà from the University of Colorado Boulder stated, “Our study provides new evidence that fibromyalgia patients display altered central processing in response to multisensory stimulation, which is linked to core fibromyalgia symptoms and may be part of the disease pathology. The finding of reduced cortical activation in the visual and auditory brain areas that were associated with patient pain complaints may offer novel targets for neurostimulation treatments in fibromyalgia patients.”
Yes, there is chronic widespread pain. It is often the symptom people think of. Yes, we have pain. All the time. And we can flare up with a lot more than our baseline pain as well. And there are more types of pain than people think. See Fibromyalgia Pains, which includes the tortuous burning of allodynia
The fatigue can be as relentless as the pain. No napping will ever get rid of this intense exhaustion. You feel beaten down, lethargic, tired soon after we do things, and just no energy to spare when we want to do something.
With fibromyalgia, we have some major issues with the quality of sleep. Due to our brains, we do not get as much deep, restorative sleep, so when we wake up we do not feel refreshed. We are very prone to delayed onset insomnia, where we struggle just to get to sleep. As well as sleep apnea and restless leg syndrome.
We have what is often referred to as Fibro Fog. It is intense brain fog that affects our memory, short-term memory, working memory, focus, and concentration. We can sometimes lose our train of thought. Forget the words to things. Or use the wrong word in a conversation.
We often get a lot of comorbid. From migraines to IBS. I gained hypothyroidism and peripheral neuropathy along with chronic migraines and IBS-D. And they compound the chronic pain and chronic illness of Fibromyalgia. Decreasing our quality of life.
Other than the primary categories I just listed we have a lot of other symptoms in the mix. I have sensitivities to chemicals and have to be careful about detergents and cleaning products. I can’t wear make-up or use perfume. I also have low blood pressure, get night sweats, and get palpitations… all symptoms of Fibromyalgia.
All this can be life-altering. I can’t work certain jobs that require a lot of standing, lifting, or repetitive movements. Repetitive movements and lifting aggravate the chest wall pain called Costochondritis to an insane degree. And standing for long periods causes immense pain and sometimes once I do sit down I can’t get back up, the pain in my knees causes them to collapse. So we are limited in that sense on what job we can take. But then is the fibro fog there to make any job complicated beyond measure.
It is variable. I can walk an hour one day, with pain, but not extremepain. The next week I walk 15 minutes and it is extreme pain.
Every single thing we do hurts. Everything has a cost and a consequence to it.
I can tell you for me it was a relief. I had symptoms for years but being undiagnosed is difficult. You have to deal with it all but have no treatment, no label, and no real understanding of what you should do.
I was coping well at the time after having gone through a few years of difficulty coping. I didn’t have chronic migraines yet. I had learned to pace and moderate but I wasn’t in the workforce yet, so didn’t have that additional stressor on me. So I was doing well coping–wise with some Unknown conditions. I speculated it was fibromyalgia. Many things had been ruled out, after all.
But the Label mattered to me. I wanted to know what was wrong. What to do about it. If there was Anything I could do about it. I needed the official diagnosis. However, I pretty much knew by then what it was. And by then my father had already been diagnosed. But you need the label to give doctors. Otherwise, it is all Doubt. It is all ‘maybe it is in your head’. You need someone to make it real for them.
Turns out, the rheumatologist told me I was ‘too young for medication’ so it would be years before I even explored any actual medications for fibromyalgia. And this was long before Lyrica, Cymbalta, and Savella existed. So yeah, that ‘too young’ stigma was a real pain, literally. Especially when the migraines complicated my pain and coping once they arrived and continued to get worse over time.
Still, once you have the Official Diagnosis you can move on to treatment. To what may or may not work for you. You have a general idea of what you are dealing with long-term… which for me, was wildly wrong since I had no Idea so many comorbid could crop up. Or that brain fog could be such a massive problem all on its own.
But you can conceive of coping with it and seeing some sort of future with it, once it is known. But at the same time, you are aware it is chronic and it isn’t going anywhere. And that there really isn’t much known about it or really any effective treatment. This means a lot of the coping burden falls on us. And a long future of trial and error. And realizations on how worse it can get.
Still, I felt relief mostly. To have the name put to the illness. Finally. After so many years. Just Finally.
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.
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)!
I recently began reading Toni Bernhard’s wonderful book How to Live Well with Chronic Illness. I was inspired to write this post after reading a section in her book where she outlines her ‘not-to-do list’. Bernhard rightly points out that it takes a great deal of self-discipline to stick within the restrictions imposed on your body by chronic illness. In my own case, I’ve found that most of my self-growth has come from recognizing, accepting, and learning to do things differently in response to these restrictions. I thought I would share my own not-to-to list:
Do not equate productivity with self-worth: in my life before fibromyalgia I made work my top priority. I was in my mid-twenties and trying to start a career. I made a lot of sacrifices in my relationships and personal life in order to achieve these goals. When all this came crashing down and I was no longer able to work, I could not see how I added value to the world around me. Although I lead a much more well-balanced life now, I still have that voice in the back of my head every day judging whether I accomplished enough, and in turn, how good I feel about myself. Now I challenge these thoughts. When you live with chronic illness, every act of self-care, pursuit of a hobby, time spent with a loved one, or even regular work are all “productive”.
Do not spend more time with toxic people then you choose to: we all have people in our lives, whether friends, colleagues or family members who are difficult to be around. They make us feel upset, drained, and negative. Sometimes I refer to these people as ‘energy vampires’- after visiting them, you feel depleted and depressed. These are people that you need to set boundaries with, regardless of any guilt they may throw your way. Toni Bernhard writes about having a revelation that she was not personally responsible for the behaviour of other people. She practices equanimity about the fact that other people often don’t act the way we want them to, which I think is a valuable insight for people living with chronic illness.
Do not push through: at the beginning of my illness journey, I never let myself “give in” to the fatigue or pain I was experiencing. I would stay out at a cafe all afternoon, even if I started to go cross-eyed with exhaustion, rather than surrender to my limitations. Now I understand that this not-to-do actually helps me transcend my limitations, rather than surrender to them. After taking a Mindfulness Based Stress Reduction class, I learned to develop a different relationship with my body. I try to work with my body, rather than in spite of it. For example, I really wanted to write this blog post today, but I am especially fatigued after a bad night’s sleep. So instead, I am writing one bullet point, then resting, then writing etc. You have probably had ‘pacing’ recommended to you before. Personally, I don’t usually follow a rigid pacing schedule, like 15 minutes work, 15 minutes rest, etc. Instead, I regularly check in with my body and accommodate accordingly. To me, for pacing to be successful, it needs to be about more than scheduling; it’s about building a better relationship with your body.
Do not add judgment of yourself on top of the challenges you already face:most of us are our own worst critics. We often set impossible standards for ourselves. Even in the face of the challenges of chronic illness, I still think that I should be more positive, zen, strong, or competent, among other things. When I get upset about something, I’m good at piling more judgment on top of myself for even being upset in the first place. By being more aware of my inner dialogue, I’m getting better at recognizing when I do to this. When I catch myself, I try to say ‘this extra judgment isn’t helping me deal with the real problem here’. I take a deep breath and begin again.
Do not say “I should” or “I have to” or “I must” to yourself: These types of statements set impossible standards for yourself, and are unrealistic given the constant flux of symptoms that characterize chronic illness. I’ve learned it’s important to hold intentions about what I would like to cultivate more of in my life. Intentions are always present. We always hold them in this moment. Goals about what you should/must/have to always do exist in the future. When you live with chronic illness you have so little control over what tomorrow will look like. ‘I should’ statements presume an all or nothing definition of success. These types of statements set yourself up for failure. It’s more helpful to say “I’m going to try my best to do __”. Hold this as an intention, even through set-backs.
As most fibromyalgia patients know, there are no approved tests to diagnose this chronic pain condition. A new study has taken science a step forward in this direction. Researchers at the University of Colorado Boulder have identified a brain signature that is able to predict fibromyalgia with 93% accuracy. Functional MRI scans were used to compare brain activity in 37 fibromyalgia patients and 35 healthy controls as they were exposed to multiple sensory sensations (visual, auditory, and pressure). The study found three ‘neurological patterns’ common to 93% of the participants with fibromyalgia. Specifically, these brain responses “show characteristically enhanced unpleasantness to painful and non-painful sensations accompanied by altered neural responses” (Lopez-Sola, et al., 2016). As this was the first neuro-imaging study of the chronic pain condition, it provided further proof that fibromyalgia is a central nervous system disorder. Additional studies may help to determine if there are sub-types of the condition and individual variations, ultimately leading to more effective treatments.
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.
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.
I am a mother and I am a daughter. I am a father and I am a son. I was busy living my life, and one day I got sick. I went to the doctor and they ran test after test after test and could not figure out what was wrong with me.
I am a student and I am a teacher, I am a grandchild and I am a grandparent. Finally, they gave me a diagnosis of exclusion, something called Fibromyalgia, because their diagnostics are not sophisticated enough yet to source the true cause of the problem. They told me it is not terminal, but there are limited ways to treat the burning fire inside my muscles that debilitate me.
I am a sister and I am a brother, I am an aunt and I am an uncle. I experience extreme sleep disturbances, constant and pervasive pain, and cognitive impairment. It makes living life very difficult, for both me and those around me. The medications I have been given treat the symptoms, not the source, and have many side effects.
I am a cousin and I am a friend. I am a niece and I am a nephew. My dreams and goals and ambitions are very much alive and well, but my body will not cooperate! I am limited and dependent and very very frustrated.
I am a survivor and I am a fighter. I am NOT a hypochondriac, faker, dramatic, lazy, crazy, wimpy, a junkie, scamming the system or making this up. I am in pain and would give ANYTHING to have my life back the way it was before I got sick. But until medicine and science can figure out the cause and cure, I am working very hard to manage my life around this illness. Every day that I get up is a fight, a fight for myself, my family, my quality of life.
I am a person. I am a person who was walking around minding their own business and one day got sick. I am a person who still has plenty of life to live, love to give, and memories to make. I am a person not unlike you. I am a Fibromyalgia patient.
The Spanish study in the Journal of Clinical and Experimental Neuropsychology called “Cognitive complaints in women with fibromyalgia: Are they due to depression or to objective cognitive dysfunction?” recurited105 women with fibromyalgia for their analysis.
Fibromyalgia is characterized by widespread pain, cognitive dysfunction, sleep dysfunction and fatigue. However, the cognitive dysfunction of fibrofog with its concentration issues has not always been thought of to be from the FM. Studies have shown it is from the pain, from the sleep dysfunction and even from depression.
Eighty-four percent of the patients reported subjective cognitive complaints. Depression scores, everyday physical functioning, and working memory performance were most strongly associated with subjective cognitive complaints. These three variables were significant predictors for subjective cognitive complaints with a final model explaining 32% of the variance. Study
In conclusions “Cognitive complaints are very frequent in patients with fibromyalgia, and these are related to functional and cognitive impairment as well as to depressive symptoms.” Study
In other words, even if the patient has depression, all the cognitive issues are not related to it.
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.
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.
