Dear Fibromyalgia

Category: Fibromyalgia Diagnosis

Learn how Fibromyalgia is diagnosed, including key symptoms, diagnostic criteria, and the tests used to rule out other conditions.

  • 10 things I would tell the newly diagnosed with Chronic Illness

    I wish I had been prepared for the impact of what was going to happen in my life from chronic illness being newly diagnosed. Realistically. I had a firm belief back then that I could limit the impact by choosing a specific job and as long as I was engaged mentally, it didn’t matter if I was hindered physically. I didn’t think of the radius pain has. It never occurred it would get worse, complex and the impact would affect all of me and all of my life. If I wish for one thing I could have known that the first day of diagnosis… is the impact it was going to have.

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    Here are things I would have wanted to know about newly diagnosed

    1. Your social life will change:

    You will go out less often. You will lose friends. Have fewer friends and likely gain a lot of online friends. There are vibrant online communities for the chronically ill. We reach out to them to feel less isolated and to calm any fears we have about our illness. To share our concerns, fears, and coping. However, in the real world, we may not have much energy reserves to go out and do activities often. We may cancel plans when we feel worse than we expected to. Some people will drift away because of this. Those that remain tend to be the best influences on us for support.

    2. The ‘cure talk:

    People will suggest remedies, cures, treatments, diets, and medications they heard on the news, online, on Facebook, or from their Uncle Frank who swears by it. You will tire of it. Maybe you will even try some of the recommendations like that chiropractor of your work associate or the acupuncturist your hairdresser mentioned. You are new to this chronic illness game and there are so many things to try. But when you have, the recommendations? Will get tiresome. Even though you also know they all come from a good place. When it comes from a good place it is hard to say anything about it, even when it is the 10th meme you have seen on the same thing, that year anyway. People just want to help. They see something that maybe you have not and they send it to you, well intentions. Nevertheless, you will see a lot.

    3. Lifestyle:

    People will comment on your lifestyle and the changes you should make to it because it might help with your health. Exercise is mentioned often by people and doctors. As is losing weight. And dieting, often contrary diets as well. While You, on the other hand, will actually be trying a whole lot of changes from exercise to mediation, to chiropractors and physio. One thing I learned early on was there was little help with a treatment plan. I had to go out there and try to find things that might help me myself. All of these are essentially out of pocket, with a minor amount sometimes covered.

    4. Treatment:

    In the beginning, you will likely believe medications will do something profound and help a great deal. When this belief is broken you will learn medications are a long process of trial and error. Of weighing the side effects with the benefits. Finding the right medications is the first aspect of treatment, however, but they do not help to the degree you once believed they would.

    5. Research:

    Right from the get-go, you will believe your doctor. His recommendations and medications. Soon though you will begin to pick things up, do some research and join some support groups. You’ll begin to gain some knowledge about your disease and options. A couple of years into the chronic illness lifestyle and you will know more than your doctor about your specific disease. It just happens. As an informed patient you will be able to know if the treatment you are getting is sufficient or if there are better options.

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    6. Work will suffer

    : It becomes more difficult to find a job. And a struggle to figure out what and when to disclose your illness. It can be difficult to maintain full-time work. We often struggle with it and have to seek some sort of accommodation; flex work, working from home, fewer hours, part-time. Work accommodations for our workspace. Trust me this is a challenging one to figure out and adjust to.

    7. Stigma:

    With invisible disabilities, you will encounter people who will doubt you. They won’t believe you are as sick as you claim. Or that you even are. They will claim you are fine one day, sick another and it makes no sense. Or that you are complaining, lazy, or just depressed (making you less likely to discuss comorbid depression). You can have a stigma in the workplace. In the medical field, where they minimize your pain due to gender or age. In your family. In a society as a whole.

    8. Relationships: 

    relationships will be strained and stressed with this extra stressor. Not all partners can handle the extra stresses of a partner who is chronically ill. Some survive but they have to communicate about the stresses to deal with them. The partner feels more stress as well. Our illness affects those around us. And we have to acknowledge the impact and support we get. While other people, who are single, sometimes fear getting into a relationship as they feel they would ‘ruin’ someone’s life and they fear disclosing their health. Never giving the person their choice of who to care for.

    9. Pacing:

    the faster you learn you need to pace your activities during the day and week the happier you will be. We learn we do too much and we feel much worse, then have to recover. So we learn we have to pace.

    10. Limitations:

    Likewise, we have to learn our limitations. Jobs we cannot work (Shift work or repetitive lifting, heavy lifting). Things we cannot do (cleaning the house in one day). And recognize in a day when we hit a limit, knowing when to stop. Knowing on some days due to pain or fatigue our limit is less than on other days.

    Yet that is all part of the process. The friends we have are the ones a person wants on their side. A spouse that stays is one that understands illness comes to us all. We figure out a work one way or the other, something that works for us in our situations. We adapt and we change. Life changes but we cope to adjust to those changes. But it can take the newly diagnosed a bit to adapt.

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    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

  • Fibromyalgia Cognitive Symptoms study

    We are all familiar with fibrofog when it comes to fibromyalgia but fibrofog is really just part of the symptoms associated with the cognitive dysfunction of FM.

    An article published online on July 21 in Arthritis Care and Research has recently looked more in-depth into the symptoms of cognitive dysfunction and where it affects FM. What they looked at were four components of Executive Function:

    • Shifting; the ability to shift our attention between tasks.
    • Inhibition; the ability to suppress routine responses.
    • Updating; replacing outdated information with current relevant information.
    • Access; the ability to access long-term memories which are needed for verbal fluency.

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    The study had 30 participants between the ages of 18 and 70 with a control group of 30 women matching in age group. All participants were involved in 90 minutes of testing that measured pain, anxiety, depression, executive function, memory, and working memory. Self-evaluation of cognitive impairment was also measured using the Functional Assessment of Cancer Therapy-Cognition Scale (FACT-Cog 2), which can be used with people that do not have cancer because it does not contain any specific references to cancer.

    The patients with FM reported a mean pain intensity level of 6.68 (SD, 2.59) on a visual analog scale, suggestive of moderate pain. On the Hospital Anxiety and Depression Scale, patients with FM had a mean total score of 18.2 (SD, 5.8), indicating severe anxiety and depression, compared with a mean of 11.2 (SD, 5.7), or moderate anxiety and depression, among the control participants (P < .0001). Scores of 8 or more suggest clinically relevant levels of anxiety or depression.

    On the Digit Scan-Backward test, a measure of updating and working memory, the patients with FM had a mean score of 3.8 (SD, 1.1) compared with a mean of 4.4 (SD, 0.9) for the control group (P = .031). Patients with FM also scored lower on the delayed recall portion of the Rey Auditory Verbal Learning Test, with a mean score of 9.9 (SD, 3.6) compared with a mean of 11.7 (SD, 2.4; P = .033), suggesting impairments in episodic memory.

    Attentional shifting was measured using the A and B portions of the Trail Making Test (TMT). There was no significant difference between groups on scores for the TMT-A, in which participants connect numbers ascending from 1 to 25. However, on the TMT-B, which requires the test takers to alternate between numbers and letters, FM patients recorded a mean score of 97.3 (SD, 39.9) compared with a mean of 75.7 for the HC group (SD, 28.6; P = .020).

    Working memory was measured with the 1-Back test, in which subjects look at colored blocks on a screen for a given period of time and must then press a keyboard to indicate what they have seen. Reaction time is measured in milliseconds, along with accuracy. There was no difference in accuracy between the groups, but the patients with FM had significantly longer reaction times (mean, 891.2 msec; SD, 185.0) compared with the HC group (mean, 722.4 msec; SD, 131.9; P < .0001).

    I can see the delayed reaction time in working memory. I have felt it. It is like a glitch and then your brain kicks in. But I would have to say there is some issue with working memory overall… in the sense our concentration and focus issues impair it. Try holding a thought in your head… like doing simple math… carry the one… and then poof you forget the one exists and then lose where you were and have to start all over again. So math-wise, by hand is better or obviously by the calculator. I’m just saying that I feel other than a delay in working memory… it is actually faulty as well.

    Patients with FM also showed significantly poorer judgment on all measures of self-perception of cognitive dysfunction, including mental acuity (P = .002 compared with HC participants), deficits noticed by other people (P = .001), verbal and nonverbal memory, verbal fluency, functional interference, and effect on the quality of life (P < .0001 for each). (Medscape)

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    Yes, obviously verbal and nonverbal memory and verbal fluency are influenced a great deal. We talk about our language dysfunction all the time. Talking wise, and in writing, things do not come out… right. I have noticed doing a crossword game that I am just as good as I have always been but again there is a notable delay in finding the word in my brain. So I know it, pause, think, pause, think, pause, then it kicks in and it comes out. So obviously speaking where you just use words automatically without constantly thinking… they come out ass-backward or with similar-sounding words or the wrong tense.

    Overall, the more serve the patient’s FM (measured by the Fibromyalgia Impact Scale) the greater the self-perception of cognitive impairments (such as attention and concentration or fibrofog). The sample size though was a limitation of this study. “In addition, the authors did not control for pharmacological treatment when enrolling the participants, and they point out that certain medications can have a significant effect on cognitive function. However, they write, “this limitation does not invalidate the main result of the study, which concerns the degree of accordance between subjective and objective reports.”

    And that is a severe limitation of this study. We can be on no meds or multiple medications. And those medications can affect concentration, memory, and fatigue levels. I think that could rather skew the results a substantial amount given I have felt what certain meds have done cognitively to me.

    “[O]ur data indicate that the long-term and working memory, shifting of attention and updating executive functions of FM patients are impaired compared to [HC]s,” the authors conclude. “These impairments are reflected in subjective complaints independently of depressive symptoms.” They recommend the inclusion of a self-report questionnaire to assess cognitive impairment in the initial clinical evaluation of patients with fibromyalgia.

    These studies are interesting but I would be interested in a meta-analysis because it seems there is Some consistency in them but also a lot of difference and I would be interested in where there is a consensus.

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    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

  • 6 things I would like you to know about Fibromyalgia

    6 things I would like you to know about Fibromyalgia

    There are a lot of things I wish people understood about Fibromyalgia I would like to share for fibromyalgia awareness.

    Here are a few…

    We have ambition.

    Just like all the ‘normals’ out there we have ambition. Career goals. Things we desired to do with our lives. It is just the syndrome with the pain, fatigue, and comorbid conditions interfering with that reality. We ended up making compromises and getting other jobs. Or we were forced to work part-time. Do flexible hours. Work from home. Or go on disability. You have to understand this was a hard sacrifice for us to make. It was one of those compromises that we feel stole something from us but we needed to make for our health. Not that we are lazy and living it up. No, we wanted to have it all. A career and a way to manage our illness with it. It hurt to know we couldn’t.

    We look fine, but that is our Baseline pain.

    What you see when we look fine and are doing well enough to function is our Baseline Pain. It is the pain we deal with no matter what. Always there. We are not ‘better’. We were not ‘cured’. There is not fine one day, sick another. It is our baseline craptastic feeling of existence. So we feel we can deal with this and do slightly more moderated activities. Don’t see this and assume why can’t you do That all the time. It is a mistake. You are looking at a damn fine day.

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    We have flare-ups.

    Flare–ups of pain often come from pushing ourselves beyond our limits. Which we do because often we feel we have no choice. That we must. And sometimes we do it because there is something special we want to do and are willing to pay the inevitable pain price. A flare-up is a large jump in symptoms and pain. We are low functionality these days. We need downtime. We need rest. And we need to not feel guilty about this because we need to focus on self–care. I’ve had flare-ups that are just random. Hit me hard and I just had to recover like usual. Minimal activities, rest, and self-care. This isn’t an ‘exaggeration’ this is a painful event that can last for days.

    We guilt a lot.

    We compare ourselves to our past healthy selves. To other people. To a fictional self that never got ill and did great things we never did. And we feel guilty for clearly failing to be those things. We feel guilty about taking care of ourselves when we should be trying to catch up on housework or anything… to feel productive. Because are we not supposed to be productive to be useful? We never give ourselves a break. People criticize us with their stigma and lack of knowledge but we are far worse on ourselves than they ever will be. Getting used to an ill existence is a difficult task. And making us feel guilty isn’t helping the matter, it is reinforcing the belief we should feel guilty, like a failure, and shame at being ill.

    We are tired.

    We have all-consuming fatigue. Like walking around with a lead blanket all-day wearing you down, making it hard to engage in activities and when we do… it exhausts us. We are running on empty from the sleep deprivation and fatigue combined. So we need to rest often. We need to take short naps to boost what little energy we have. This is not lazy. It is the management of energy conservation.

    Moderation.

    We have to think about moderation in all things. We have limits and we know what happens if we exceed them. We have to pace our activities all the time. We cannot rush through the day with several things on the menu planned. It simply doesn’t work that way. We have limited energy and pain resources to use. We have to carefully decide what we have the energy to use on that day. People often do not understand this limitation, which for us is a lifestyle. Maybe they don’t understand because they are in such a rush all the time and we cannot be. To do so leads to pain, flares, and boom and bust pain cycles. All of which we try to avoid.

    The thing with Fibromyalgia is that it is always there. It seems like every system in your body is against you. If it is not one thing, it is another. All over pain all the time, but also specific pain in some areas that quite a bit hurts more than the rest. And flares that hurt significantly more than normal. We are constantly adjusting to this on a daily basis and managing as best we can in a body that fluxes with symptoms and pain constantly. For example over and above my baseline pain my knees and feet are killing me, I have extreme nausea and fought all day with IBS-D. Who knows what tomorrow will be like.

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    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

  • Adolescents with fibromyalgia who are physically active report lower levels of pain and disability

    Adolescents with fibromyalgia who are physically active report lower levels of pain and disability, according to findings of a multicenter study published in The Journal of Pain, published by the American Pain Society.

    Led by researchers at Cincinnati Children’s Hospital, this study is the first to use actigraphy-based physical activity monitoring to measure the relationship between pain, perceived functional impairment, and depressive symptoms in adolescents with juvenile primary fibromyalgia syndrome (JPFS). For the research, 104 adolescents ages 11-18 were fitted with hip-mounted actigraphs for one week. The battery-powered device measures the amount and intensity of human physical activity.

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    The research objectives were to measure physical activity levels in adolescents with JPFS, examine the differences and characteristics of high and low activity subjects, and explore the impact of psychiatric disorders on physical activity. The objective activity measurements were intended to address concerns about the reliability of self-reports on the impact of pain on physical activity, and validate observations that some JPFS patients remain vigorously active while enduring significant pain.

    Results showed that adolescents with JPFS did not engage in physical activities and aerobic exercise at levels recommended by their physicians. Just 23 percent of the subjects participated in 30 minutes of daily moderate-to-vigorous physical exercise, and only one adolescent engaged in 60 minutes of exercise every day. Low levels of exercise in these patients are troubling to clinicians who view exercise as a major component of improved pain management.

    Another key finding was that higher pain intensity ratings were not significantly associated with lower levels of activity in the group as a whole. The authors noted that adolescents with JPFS have other symptoms that may diminish interest in physical activity, such as fatigue and impaired sleep. The authors also noted that higher pain levels in the least active group may be related to their decreased activity or vice versa.

    Further, the inactive group had higher levels of depressive symptoms and functional disability, according to parent reports. However, in the small number of JPFS patients who maintained very high levels of physical exercise, the reported pain levels were lower than the inactive group, perhaps due to exercising, and their parents reported they had lower depressive symptoms and disability than inactive subjects.

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    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

  • Study probes obesity link to fibromyalgia

    Study probes obesity link to fibromyalgia

    Afflicting up to 5 percent of the U.S. population, mostly women, fibromyalgia is characterized by widespread pain and a range of function problems. A new study in The Journal of Pain reports there is a close association between obesity and disability in fibromyalgia patients.

    The purpose of the study, conducted by University of Utah researchers, was to evaluate the relationship between fibromyalgia and obesity. They hypothesized that obesity significantly adds to the disease and disability burden of the condition. Two hundred fifteen fibromyalgia patients were evaluated in the study and given several physical tests to measure strength, flexibility, range of motion, and strength. Heart rates and sleep quality also were assessed.

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    The authors reported that consistent with previous studies, obesity is common among those with fibromyalgia. Half the study sample was obese and an additional thirty percent were overweight. Also consistent with previous findings, obese patients in this study showed increased pain sensitivity, which was more pronounced in lower body areas. The obese patients also had impaired flexibility in the lower body and reduced strength.

    The study concluded that obesity is a common comorbidity of fibromyalgia that may compromise clinical outcomes. The adverse impact of obesity is evidenced by hyperalgesia, disability, impaired quality of life, and sleep problems. The authors also noted that recent evidence suggests weight loss improves fibromyalgia symptoms, perhaps resulting from patients adopting healthier lifestyles and taking more positive attitudes toward symptom management, and overall quality of life.

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    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

  • Young people report worse fibromyalgia than older patients

    It may seem counterintuitive, but young and middle-aged fibromyalgia patients report worse symptoms and poorer quality of life than older patients, a Mayo Clinic study shows. Fibromyalgia most often strikes women. It is characterized by widespread musculoskeletal pain with fatigue, sleep, memory, and mood issues. The research, one of several Mayo studies being presented at the American College of Rheumatology annual meeting, suggests the disorder plays out differently among different age groups.

    Researchers studied 978 fibromyalgia patients and divided them into three age groups: those 39 or younger, those 50 to 59, and those 60 or older. The younger and middle-aged patients were likelier to be employed, unmarried, and smokers and have a higher education level, lower body mass index, more abuse history, and a shorter duration of fibromyalgia symptoms than older patients.

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    “Among the three age groups of young, middle-aged, and older, symptom severity and quality of life differ,” says senior author Terry Oh, M.D., a physical medicine and rehabilitation physician at Mayo Clinic in Rochester, Minn. The study’s findings were surprising because the quality of life and physical health are considered to be negatively associated with age, Dr. Oh says.

    Dr. Oh notes that women in all three groups with fibromyalgia reported a lower quality of life than average U.S. women and that the difference between their physical health and that of the average woman was more significant than mental health differences, particularly in young patients.

    In other studies, Mayo researchers found:

    *About 7 percent of fibromyalgia patients had inflammatory rheumatic conditions, and in general, those fibromyalgia patients didn’t do as well with treatment as those without rheumatic diseases.

    *Fibromyalgia patients may also have skin-related symptoms such as excessive sweating or burning or other sensations.

    *Obese patients with polymyalgia rheumatica have more pain and disability than other polymyalgia rheumatic patients. They also tend to need higher doses of glucocorticoids.

    *Rheumatoid arthritis patient experiences and symptoms do not always reflect what medical literature shows when it comes to pain, morning stiffness, the relationship between swelling and damage, and what worsens or improves symptoms.

    *Hospitalization is a significant risk factor for gout flares in people already diagnosed with gout.

    https://fibromyalgia-6.creator-spring.com/
    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

  • Fibromyalgia assessments

    So it looks like some clinicians have some uncertainty when it comes to diagnosing Fibromyalgia. Remember the criteria for tender points are no longer used.

    Data from the U.S., Europe, and Asia report that approximately half of providers admit uncertainty in confidently making a diagnosis of [fibromyalgia]. Diagnosing [fibromyalgia] more promptly should reduce unnecessary tests, specialty referrals, health care costs, and patient anxiety,” Kim D. Jones, Ph.D., FNP, FAAN, from Oregon Health and Science University School of Nursing and School of Medicine, and colleagues wrote.

    “Based on our clinical experience, we surmise that clinicians need a simple screening test that can be performed as part of the routine evaluation in all patients with persistent pain complaints.”

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    The study recommends adding two things to help with assessments.

    • Asking whether they have deep, persistent, aching pain all over their body. Widespread pain criteria.
    • And see if there is a pain when the Achilles tendon is pinched for 4 seconds.

    The study involved 52 patients with FM, 108 with chronic pain but not FM, and 192 without pain or FM. They used three measures: BP cuff-evoking pain, digital palpation-evoked pain, and a question about persistent deep aching. Patients were looked at for tenderness to digital pressure at 10 spots and BP cuff-evoked pain and then asked to rate their deep persistent aching widespread pain on a 1-10 scale.

    More FM patients answered the questions about persistent deep aching compared to the chronic pain subjects. They had higher bilateral digital evoked tenderness and BP cuff-evoked pain. (But the cuff-evoked pain became non-significant when researchers did multivariate logistic regressions).

    The analysis demonstrated pinching the Achilles tendon for more than 4 seconds and a positive answer to the deep aching question did provide a beneficial screening test that indicated a probable diagnosis of fibromyalgia.

    “We are recommending two simple assessments to be added to the routine evaluation of any chronic pain patient. We envisage these assessments be used as a screening instrument, not a diagnostic test, with a definitive diagnosis of [fibromyalgia] being reserved for later,” Jones and colleagues wrote. “By raising a provider’s index of suspicion, patients may be spared a lengthy cycling through the medical system before receiving a diagnosis of [fibromyalgia] and beginning treatment.”

    https://fibromyalgia-6.creator-spring.com/
    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

  • When you have fibromyalgia

    It is fibromyalgia awareness month once again. Remember fibromyalgia awareness day falls on May 12th.

    I’d like to start the month with a little fibromyalgia humor. Sadly, it is also all true.

    When you have fibromyalgia

    Sleep is the delicious nectar of the gods that is denied you

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    Too much sleep? That’s a flare

    The last time you had no pain was before the Big Bang

    Doing a thing? That’s a flare

    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.

    Existence? That’s a flare

    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.

    IBS? That’s an extra bonus flare

    Your words don’t word

    Your memory is great but insanely short

    Your sense of your body is what areas hurt more than the other areas

    Also, don’t do the Hokey Pokey

    https://fibromyalgia-6.creator-spring.com/
    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

  • What did you feel was diagnosed with fibromyalgia?

    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.

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    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.

    https://fibromyalgia-6.creator-spring.com/
    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

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  • 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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