You have to stay within your limits. Those limits change every day. It is a fun game we play called accidentally causing a flare from something you did just last week
Moving your body? That’s a flare
You get so fatigued you wonder if you need a nap, another nap to compound the nap you took, or just melt into a puddle of motivationless goo as the fatigue drags you down.
Your mind is pudding and you have no idea if a sentence is going to come out of your mouth or just garbled nonsense. Not that it matters you don’t even remember the name of the dude you are talking to.
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.
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 has been a study published in the Journal of Pain from Australia that might suggest opiates may cause increased sensitivity in some types of pain. The study had the patients who have chronic pain and hyperalgesia, which is that intense response to pain, we also see in fibromyalgia. They were taking methadone and morphine for the study.
Hyperalgesia is an increased pain response such that more pain is felt than dictated by the stimulus or injury would suggest. It can be specific to an area of the body or widespread. It can be seen with some inflammatory conditions, with some nerve damage situations and it is also a main feature of fibromyalgia. It is quite commonly associated with long-term use of opiate medications so it is not surprising this study likewise had similar results.
“A second finding showed that similar nociceptive profiles are found in chronic pain patients treated with methadone. Third, the study showed that pain sensitivity associated with methadone administration also is found in morphine-treated patients. According to the authors, the study demonstrated that hyperalgesia but not allodynia is associated with the long-term administration of opioids.”
In many cases, opiate based medications, such as Percocet (oxycodone) are not as effective for people with fibromyalgia and a more effective treatment are the medications acting on the brain neurotransmitters themselves. Lyrica and Gabapentin are anticonvulsants which by affecting certain neurotransmitters try to dampen the pain signals and decrease pain where it is in fact starting. Fibromyalgia is brain pain and medications that focus on the brain have a better chance of treating that pain. Other medications that aim specifically at FM are Cymbalta and Savella which are antidepressants used to affect the serotonin neurotransmitter, often found to be lower in FM patients. However, some people do take them for pain management so this will be a concern if it, in fact, increases their sensitivity to pain over time. In the cases, where pain medications are used it might be something to be used in moderation and careful consideration.
It should be noted this risk factor occurs with all chronic pain and is a low risk. When it occurs the patient is switched to another opiate. It should also be noted Tramadol is in the guidelines for treatment as it is one that has been studied as effective for fibromyalgia pain.
This is a reprint of the study I had published on a site that is gone, so putting it up again. As I said, this is a risk factor for all people using opiates. It does run the risk of causing hyperalgesia and this study doesn’t indicate if the risk is greater with FM. However, my previous research into this effect suggests it isn’t a common reaction at all. Typically the patient is simply switched medication. There have been little studies on FM and opiates and the studies Minimal to make any conclusions about. Mostly on Tramadol, which is seen as acceptable and is in the guidelines for treatment.
Here’s the problem with this type of blanket statements: these recommendations are based on the results of only a few small studies showing they were ineffective for fibromyalgia pain. Since no large trials have been done, the recommendations against opiate use for fibromyalgia are based on data from less than 100 subjects! Also, these small studies only looked at patients taking opiates every day for pain, and we know that daily, long term use of opiates does result in negative side effects and diminishing medication benefit over time. None of these small studies assessed the most successful use of pain medications, which is when they are taken just as needed for flares.
So take it with a grain of salt. But know doctors will resist the idea based on these very little studies.
This is of concern to me due to my low blood pressure issues and dizziness. And it makes me wonder. Especially since my doc mentioned I may have POTS.
So the study is looking at the Baroreflex response. Without it we would stand up and get dizzy and could faint. It is mechanism in the body that tries to regulate our blood pressure.
The response involves nerves in the blood vessels near, in and around the heart. Receptors called baroreceptors found on these nerves constantly (fractions of a second) monitor your blood pressure. When your blood pressure gets too high, baroreceptors inhibit the heart rate by turning down sympathetic nervous system activity. When it dips too low, they send a message to the brain to increase the heart rate.
Studies have suggested this baroreceptor problem could explain the pain in FM. “A 2010 study asserted that the role baroreceptors play in pain inhibition has been “well-documented.” It concluded that problems with cardiovascular control likely played a role in producing the pain problems FM patients face. Reduced baroreceptor activation in a 2015 study was associated with increased pain intensity in FM as well.”
So are dizziness, rapid heartbeats, increased pain and such known to be common symptoms of FM? They are of M.E/CFS. And they are with me. Even chest pains, and palpitations. People with FM do get palpitations, that I know.
“Baroreflex dysfunction has been observed in women with FMS. However, it is unknown whether the limited involvement of the baroreflex control during an orthostatic stimulus has some impact on the quality of life of the FMS patient. Therefore, the aim of the study is evaluate the relationship between the quality of life of the FMS patient and indexes of the cardiovascular autonomic control as estimated from spontaneous fluctuations of heart period (HP) and systolic arterial pressure (SAP). ”
They enrolled 35 women (age: 48.8±8.9 years; body mass index: 29.3±4.3 Kg/m2). respiratory activity, blood pressure and electrocardiogram were consistently recorded during a 15 period of rest laying down. (REST). And in Orthostatic position during active standing. (STAND).
Traditional cardiovascular autonomic control markers were assessed along with a Granger causality index assessing the strength of the causal relation from SAP to HP (CRSAP→HP) and measuring the degree of involvement of the cardiac baroreflex. The impact of FMS on quality of life was quantified by the fibromyalgia impact questionnaire (FIQ) and visual analog score for pain (VAS pain). No significant linear association was found between FIQ scores and the traditional cardiovascular indexes both at REST and during STAND (p>0.05). However, a negative relationship between CRSAP→HP during STAND and FIQ score was found (r = -0.56, p<0.01). Similar results were found with VAS pain.
They concluded that the lower degree of cardiac baroreflex involvement during STAND in the subjects the higher the impact of the FMquality of life. In other words, we might have problems doing things while standing.
Worthy to note other studies previously:
Evidence of orthostatic problems, however, showed up early in a 1997 study finding that 60% of FM patients (but no healthy controls) exhibited a significant drop in blood pressure during a tilt-table test. Martinez-Lavin followed that up with a 1998 study highlighting the autonomic nervous system problems that popped up when FM patients stood.
A 2005 study found a high rate of fainting (44%) during a step-wise TILT test. I was unable to find any studies evaluating the incidence of postural orthostatic tachycardia syndrome (POTS: >30 heart rate increase upon standing), but Staud, in a 2008 review, claimed that POTS commonly showed up in tilt table tests in FM.
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.
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?
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:
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”
