being knocked out after any activity

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snowy0wl
snowy0wl Posts: 179 Member
Be it from cleaning or worse walking for the exercise is it common to be bed ridden from several hours to days after something causes a flare? Is there anything can be done if you can't be on meds?

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  • Sivangj
    Sivangj Posts: 182 Member
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    Hmm not sure if I am the right to answer, still ....
    Can tell that the first 3-5 months after starting to exercise I always got worse after.
    Now I do need some kind of exercise everyday or I down for sure. So it have change
    Have you tryed changeing your diet to a more fibro friendly one ?
    I started change my diet in June. Have cut wheat, refined sugar and milk products that contain lactose to little or nothing at all. Eat little meat of pig. That combined with being stubborn and exercise even though I did get worse. I think is the reason I now are more or less meds free. Have to do all exercise with ease though. Never overdo since we get it a lot worse than others with out fibro
  • canadjineh
    canadjineh Posts: 5,396 Member
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    I agree with Sivagj... I haven't needed to use meds since I went totally (celiac style) gluten free and I don't use sugar that much (except Lindt dark 90% chocolate once in a while which has 2x fat to sugar ratio) and the only dairy I use is predigested, lol, cheese and yogourt (esp Greek for protein). I do take reishi mushroom extract in the morning which helps the mitochondria energy issues in my case, but I never push that on anyone else, everyone is different. The food thing is huge though, I would suggest trying that for at least 6 months and see how you feel, pain & energywise. Use whatever soothes your pain after exercise be it cold packs or heatpacks/warm bath. Self massage works well for me as does guided imagery.
  • snowy0wl
    snowy0wl Posts: 179 Member
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    Thank you for responding,

    The restrictions that are being applied are quite extreme, She also deals with PCOS and a bunch of mental things that make the process harder. I'm convinced that her metabolism is in the dumps and running about 50-60% of what she should be consuming because her TDEE should be 2100 but she's only consuming 1100 and maintaining and gaining weight.

    The medical doctor looking at her situation told her she wasn't eating enough and instructed her to eat 1800 calories. She tried to and gained 50lbs in a couple of months.

    She has been through all this doing the no wheat, not gluten, no dairy. once a vegan, and needed efa supplements to make up for the incomplete amino acids.

    She broke down ethically and started to consume eggs. she broke down some more and started to eat some fish. She really was missing the protein and her moral stance to take a back seat. She only has about 70-100$ to work with a month and that really isn't enough to do it the 'healthy/fibro way'

    @ canadjineh, how do you know if mitochondria energy issues, is that a specific disease/disorder?

    She's getting a heat mattress pad from me so I hope that will help with her laying down when she is out.

    She has very limited mobility but pushes very hard. a 15 minute walk will cost her a couple of days in bed/couch. Doing chores around the house costs her down time in the multitude of hours.
  • canadjineh
    canadjineh Posts: 5,396 Member
    edited February 2015
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    "@ canadjineh, how do you know if mitochondria energy issues, is that a specific disease/disorder?"
    @Snowy0wl, I've done a lot of research reading published scientific papers about FM on PubMed and Medscape (legit sites for doctors and other medical professionals - I was a Physio Rehab Specialist). I will try to re-find the exact article for you but may have to post whole paragraphs from it if I can't link from member-limited sites. In FM the mitochondria in the cells do not work normally. This is in addition to the overabundance of Substance P throughout the cerebral spinal fluid, and the dopamine and serotonin disregulation in the brain.
  • canadjineh
    canadjineh Posts: 5,396 Member
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    Also Snowy0wl, PCOS drastically affects one's ability to lose weight. You might want to check out some more info from the doctor on it (google a bit too but try to stick with legit sites like PubMed, Mayo Clinic, Stanford University Medical, etc.)

    Here's some quotes from Medscape on FM: I apologize in advance for the heavy duty scientific lingo but it is a doctor's site.

    ""A number of abnormalities in pain processing have been demonstrated in fibromyalgia.[25, 26, 27, 28, 29] Among them are the following:

    •Excess excitatory (pronociceptive) neurotransmitters (eg, substance P, glutamate levels in the insula)

    •Low levels of inhibitory neurotransmitters (eg, serotonin and norepinephrine) in descending antinociceptive pathways in the spinal cord

    •Maintained enhancement of temporal summation of second pain

    •Altered endogenous opioid analgesic activity in several brain regions known to play a role in pain modulation

    •Dopamine dysregulation

    High-throughput genotyping is rapidly identifying a series of single-nucleotide polymorphism (SNP) haplotypes that influence neurotransmitter levels and receptor levels in the brain and thus contribute to the various abnormalities in pain processing.[30] Such SNP haplotypes constitute vulnerability elements in the development of fibromyalgia and other central sensitivity syndromes.

    Pharmacologic agents that reduce pain in fibromyalgia function in this regard by either increasing levels of inhibitory neurotransmitters (eg, duloxetine) or decreasing levels of excitatory neurotransmitters (eg, gabapentin).[25, 31] Because fibromyalgia is a polygenic syndrome with multiple different underlying genetic polymorphisms, genetic testing to tailor therapy and to predict response to therapy will soon become available.

    The biochemical changes seen in the CNS, the low levels of serotonin, the four-fold increase in nerve growth factor, and the elevated levels of substance P all lead to a whole-body hypersensitivity to pain and suggest that fibromyalgia may be a condition of central sensitization or of abnormal central processing of nociceptive pain input.[3] Ongoing research will continue to provide a clearer picture of the pathophysiology of this complex syndrome. ""

    Sorry but here's more heavy duty info: Don't know if you can print it out but her doc may not be aware of all this if he doesn't deal with it much in his practice.

    ""Central processes

    Plasticity in the function of N -methyl-D -aspartate (NMDA) subtype glutamate receptors is necessary for central sensitization to occur. Increased sensitivity of central NMDA receptors were implicated in earlier studies as playing a primary role in fibromyalgia. However, subsequent evidence has suggested that suppression of the normal activity of dopamine-releasing neurons in the limbic system is the primary pathology in fibromyalgia. Increasing evidence indicates that fibromyalgia may represent a dysregulation of dopaminergic neurotransmission.

    Serotonin

    The most widely acknowledged biochemical abnormality associated with fibromyalgia is abnormally low serotonin levels. Many studies have linked serotonin, a neurotransmitter, to sleep, pain perception, headaches, and mood disorders. Lower-than-normal levels of serotonin have been observed in patients with fibromyalgia. A low platelet serotonin value is believed to be the cause of the low serum levels, which have been correlated with painful symptoms.

    Low serotonin levels in the CNS are thought to result from low levels of tryptophan (the amino acid precursor to serotonin) and 5-hydroxyindole acetic acid (a metabolic by-product) in the cerebrospinal fluid (CSF). Investigators have proposed a link between low serotonin levels and symptoms of fibromyalgia[33] ; indeed, many propose that low serotonin levels may cause fibromyalgia in whole or in part.

    Substance P

    Substance P is a neurotransmitter that is released when axons are stimulated. Elevated levels of substance P increase the sensitivity of nerves to pain or heighten awareness of pain. Four independent studies have found that levels of substance P are 2 to 3 times higher than normal in the CSF of patients with fibromyalgia.[34] These elevated levels cause fairly normal stimuli to result in exaggerated nociception.

    Some authors believe that neither elevated substance P levels nor low serotonin levels alone can be the primary cause. Instead, the dual dysfunction may be responsible for fibromyalgia.

    Adenosine triphosphate (This is the mitochondria disfunction part) link here for more info on mitochondria and ATP: http://hyperphysics.phy-astr.gsu.edu/hbase/biology/atp.html

    Researchers have found low levels of adenosine triphosphate (ATP) in red blood cells of patients with fibromyalgia. Although the significance is unknown, it has been suggested that low platelet serotonin levels can be explained if platelet ATP levels are also low. ATP is necessary to move and then hold serotonin in platelets. More investigation into ATP and the link to serotonin is needed.

    CONTINUED IN NEXT POST BECAUSE IT'S TOO LONG>

    Something else to look at as well:
    ""In addition, fibromyalgia coexists in unusually high frequency with certain illnesses characterized by systemic inflammation, such as rheumatoid arthritis (RA),[5] systemic lupus erythematosus (SLE),[6] and chronic hepatitis C infection,[7] among others. In such cases, both disorders must be recognized and treated for optimum therapeutic outcome, as treatment of one will not necessarily improve the other. ""

    Hope this helps @snowy0wl Hugs to you & your loved one!

  • canadjineh
    canadjineh Posts: 5,396 Member
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    CONTINUED FROM PREVIOUS POST^^

    "" Dysfunction of the hypothalamic-pituitary-adrenal axis

    Studies of the neuroendocrine aspects of fibromyalgia have found dysfunction of the HPA axis.[35] The HPA axis is a critical component of the stress-adaptation response. The sequence of HPA action is that corticotropin-releasing hormone (CRH) from the hypothalamus stimulates the anterior pituitary to release adrenocorticotropic hormone (ACTH). In turn, ACTH stimulates the adrenal cortex to produce glucocorticoids (eg, cortisol).

    Some authors have noted that 5 main measurable neuroendocrine abnormalities are associated with dysfunction of the HPA axis.[36] These are as follows:

    •Low free cortisol levels in 24-hour urine samples

    •Loss of the normal circadian rhythm, with an elevated evening cortisol level (when it should be at its lowest level)

    •Insulin-induced hypoglycemia associated with an overproduction of ACTH

    •Low levels of growth hormone

    •Stimulated ACTH secretion leading to insufficient adrenal release of glucocorticoids

    Circadian regulation and the stress-induced stimulation of the HPA axis are, in part, regulated by serotonin. Perturbations in serotonin metabolism (as well as premorbid abnormalities of the HPA axis) may explain the abnormalities of the HPA axis in fibromyalgia. Dysfunction of the HPA axis may exaggerate the effects of abnormal serotonin metabolism. Hypoactivity of the HPA axis may cause low central serotonin levels.

    Growth hormone

    Growth hormone, produced during delta sleep, is involved in tissue repair. Therefore, disrupted stage 4 (delta) sleep associated with fibromyalgia may account for low levels of growth hormone. Growth hormone stimulates the production of insulinlike growth factor I (IGF-I) in the liver. Some authors have found that most patients with fibromyalgia have low levels of IGF-I and that low levels are specific and sensitive for fibromyalgia.[37]

    Nerve growth factor

    In some studies, nerve growth factor was found to be 4 times higher in the CSF of patients with fibromyalgia than it was in the CSF of individuals without the condition. Nerve growth factor enhances the production of substance P in afferent neurons, increasing an individual's sensitivity to or awareness of pain. Nerve growth factor also may play a role in spreading or redistributing perceived pain signals.

    Cognitive impairment

    Fibromyalgia is associated with a decline in short-term, working, episodic, semantic (predominantly verbal), and procedural (skills) memory. Imaging modalities such as single-photon emission computed tomography (SPECT) scanning have helped to define some of the abnormalities linked to this cognitive dysfunction. SPECT shows decreased blood flow in the right and left caudate nuclei and thalami.

    Functional magnetic resonance imaging (fMRI) can show brain activity by depicting increased blood flow to areas actively engaged in a task. Increased blood flow and, hence, increased oxygenation have different magnetic properties. These properties can be detected and measured using fMRI.

    In a study of persons performing a task requiring memory (alphabetization), persons with fibromyalgia performed almost as well as controls, but fMRI showed that more brain areas were activated during the memory task in persons with fibromyalgia than in controls, because the task was harder for the patients to perform. In another study, working memory and episodic memory scores of patients with fibromyalgia were similar to those of healthy controls who were 20 years older.[38]

    Another study measured neural activation during response inhibition using fMRI. Patients with fibromyalgia had lower activation in the inhibition and attention networks but increased activation in other areas. The study indicates that inhibition and pain perception may use overlapping networks, which may cause resources to be unavailable for other processes when they are taken up by pain processing.[39]

    Cognitive dysfunction has been linked to CNS imbalances. Abnormal levels of such neurotransmitters as substance P, serotonin, dopamine, norepinephrine, and epinephrine may cause cognitive dysfunction. Neuroendocrine imbalance of the HPA axis may play a role. Another possible cause of cognitive dysfunction is the distracting quality of pain in fibromyalgia. Cognitive performance of patients with fibromyalgia is correlated with their reported level of pain.

    Brain damage from the effects of stress hormones may be involved in the cognitive dysfunction in fibromyalgia. Researchers are exploring this possibility by measuring tissue volumes in the hippocampus. Others studies have implicated yeast overload, water retention, and glial cell abnormalities as causes of cognitive dysfunction in fibromyalgia.

    Sleep disruption

    Sleep dysfunction is considered an integral feature of fibromyalgia. About 70% of patients recognize a connection between poor sleep and increased pain, along with feeling unrefreshed, fatigued, and emotionally distressed.[40, 41] Several studies have linked abnormal sleep with these symptoms. Sleep studies have shown that patients with fibromyalgia have disordered sleep physiology.

    Sleep is not a state of massive system shutdown. On the contrary, the brain is active during sleep, constantly communicating with the body. Many neurohormones, antibodies, and other molecules are synthesized during sleep; therefore, when sleep is disrupted, biochemical abnormalities can occur, leading to multisystem disturbances.

    To understand abnormal sleep architecture, it is essential to know the basics of normal sleep. Sleep can be divided into 2 main parts: nonrapid eye movement (NREM) and rapid eye movement (REM), which alternate cyclically through the night, always starting with NREM sleep. In each successive cycle through the night, NREM sleep decreases, and REM sleep increases. Each cycle, NREM plus REM, lasts about 90 minutes.

    NREM is divided into 4 stages:

    •Stage 1 is initial drowsiness

    •Stage 2 is light sleep

    •Stages 3 and 4 are progressively deeper levels of sleep.

    In stages 3 and 4, an electroencephalogram (EEG) will show delta waves, which are high-amplitude (>75 mV) waves that move slowly (0.5-2 Hz). Much of the body's regulatory work, as well as the synthesis of many substances (eg, antibodies, growth hormone, other neurochemicals), occurs during NREM sleep.

    REM sleep has a low-voltage, mixed-frequency pattern on EEGs and is considered dream sleep. In this stage, the body has a complete loss of muscle tone, known as flaccid paralysis, and it cannot move. During this part of sleep, consolidation of memories may occur, but disagreement still exists as to what takes place with regard to memory during REM sleep. Some investigators have found that during waking hours, the brain generates alpha waves with a frequency of 7.5-11 Hz.

    The disordered sleep physiology in fibromyalgia has been identified as a sleep anomaly of alpha-wave intrusion, which occurs during NREM stage 4 sleep. This intrusion into deep sleep causes the patient to awaken or to be aroused to a lighter level of sleep. Some investigators describe the altered sleep physiology and somatic symptoms as a nonrestorative sleep syndrome.

    Sleep dysfunction is believed to be linked to the numerous metabolic disturbances associated with fibromyalgia, including abnormal levels of neurotransmitters (serotonin, substance P) and neuroendocrine and immune substances (growth hormone, cortisol, interleukin-1). These metabolic imbalances are thought to be responsible—through impairment of tissue repair and disturbance of the immunoregulatory role of sleep—for the increased symptoms associated with this sleep disorder of alpha-wave intrusion.

    Most alpha-wave intrusions occur during the first few hours of sleep, decreasing throughout the night to normal levels by early morning. This hypothesis correlates well with patients' frequent reporting that their best sleep is obtained in the early morning hours, just before arising.

    Many fibromyalgia patients also have primary sleep disorders that can reduce sleep quality, such as obstructive sleep apnea, restless legs syndrome, or periodic limb movement disorder. All patients should be screened for the presence of primary sleep disorders before assuming that reduced sleep quality is due to fibromyalgia. ""

    Here's a website that may help with medical information on all her issues: From the National Institutes of Health (US gvmt.)
    http://www.nlm.nih.gov/medlineplus/fibromyalgia.html

    You are welcome to friend me if you'd like for a bit more help and encouragement on this subject.
    Liana
  • ShannonTourne
    ShannonTourne Posts: 77 Member
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    Canadijineh, this article is an eye-opener. Just the realization that there are medical reasons for feeling the we way do lifts a tremendous burden. Snowy0wl, I have PCOS as well, and I can gain an enormous amount of weight in a very short time. It is very discouraging. Currently, I am following a low carb plan. I keep my carbs at 50 or below, and I am losing weight. I've only been doing this for 3 1/2 weeks, so as far as pain, I haven't noticed a reduction, but hopefully, I will see that happen. I finally broke down last year and started pain meds and sleep meds after 4 years of nothing, and that helps. I don't like being dependent on these, but they do help me to function. Also, my heating pad is a close friend of mine. ;)
  • canadjineh
    canadjineh Posts: 5,396 Member
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    Shannon, I too am low-ish carbing (usually around 100 net g/day - which is relatively low compared to the 'normal' North American diet). I always say, use what you must to function. We wouldn't chastise a diabetic who must inject insulin to function/live, why treat ourselves any differently. It's just good to look at all possible modalities to deal with pain & sleep issues and keep a positive outlook. I like to keep a mental 'gratefulness journal' to help me focus on at least one positive thing in my day no matter how bad I'm feeling at any given time. The mental game is a huge part of ANY medical issue imho.
  • canadjineh
    canadjineh Posts: 5,396 Member
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    Wahhh, I got glutened by mistake yesterday (my own fault for just assuming something was safe because it usually is - grocery sample was on multigrain tortilla chips instead of their usual GF corn only testers.) Last night was bathroom hell (TMI, I know) and today I just feel like I've been beaten with a stick. I did go to aquacize this morning, but wow, nowhere near my usual energy and I couldn't even use any of the props for upper body exercises. It'll be a couple weeks before I'm feeling better unfortunately. Serves me right though, I should NEVER assume and always look closely!!
  • canadjineh
    canadjineh Posts: 5,396 Member
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    Bump... for those needing more FM info (for their doctors, themselves, or their SO's)