Posts Tagged fatigue

[WEB SITE] 17 Things People With Chronic Illness Mean When They Say ‘I’m Tired’

Everyone has said “I’m tired” at one point or another. But those deceptively simple words can have so many meanings. Without knowing the extent of the exhaustion someone with chronic illness is feeling when they say they’re people may think your “tiredness” can be cured by a nap or early night, like theirs, not understanding the support you really need in that moment.

So we asked our Mighty community with chronic illness to reveal what they might actually mean when they say, “I’m tired.” It’s important for the people in your life to understand the challenges you’re dealing with and the empathy and kindness that can help you get through them.

 

Here’s what our community told us:

1. “Most people who are healthy don’t understand that ‘I’m tired’ is a very shortened phrase for us. When I actually admit to friends and family that I feel bad or am tired that means so much. That means I can no longer mask the symptoms I deal with on a daily basis and I need a little compassion to get through the next few hours or sometimes days.”

2. “When I say ‘I’m tired,’ I mean my body hurts to the point I can’t explain to a ‘normal’ person how bad it hurts. It means mentally, emotionally and physically I do not want to keep going. When I say ‘I’m tired’ I’m giving myself permission for a second to stop fighting my illness and to be vulnerable. When I say ‘I’m tired’ I’m trusting you enough to show you how I really feel before I get ready to get up and keep fighting again.”

3. “I don’t want to stop helping you, but I’m pretty sure I’m going to crumble if I do one more thing. So, just smile and nod as I go sit down and put my brace on.”

4. “Just sitting in a chair is exhausting. I just want to be able to melt into the floor because I don’t have the energy to hold myself up. I’m not sleepy, I’m exhausted!”

5. “When I say ‘I’m tired’ it means I don’t want to talk about it right now. It means I’m tired of the fight my body is constantly in against itself, I’m tired of being positive, I’m tired of pushing through the pain, I’m tired of never-ending procedures and continuous doctor appointments that tend to only discover new problems. I know everything will be OK and my faith will get me through this, but right now ‘I’m tired’ and don’t have the energy or the will to put that much effort in to finding the good in my situation.”

6. “‘I’m tired’ is code for: I’ve hit the exhaustion wall/power-off button; I don’t have the energy to explain the systemic overload my body and mind are experiencing; I need to be alone; I’m sorry I can’t do that for you right now, but I’m incapable of even doing that for myself.”

7. “Most of the time it actually means, ‘I know you mean well, but please give me some space. I’d like to be alone.’ Predominantly this is when I really am absolutely exhausted and have zero energy to consider those around me.”

8. “I’m mentally exhausted from having to keep it together on the surface at work, when what I really want to do is scream out loud with the pain. The majority of my day is spent ticking down the clock so I can go home and curl up and just be in pain out loud.”

9. “Half the time it means I don’t have any reason for feeling the way I do emotionally, mentally, or physically, but I feel I need to give one. The other half of the time it’s that I’m at my breaking point and there’s not enough rest or time away in the world to bring me out of it.”

10. “It’s usually my go-to response for pain, exhaustion, anxiety, everything. It’s easier than trying to explain something ‘normal’ people will never understand. Tiredness is something everyone can comprehend on some level.”

11. “I want, no need, to collapse right here. I’m in so much pain I want to cry, but it isn’t socially acceptable to do that. I can’t think straight enough to know my own name, let alone what I should be doing right now!”

12. “When I say I’m tired I mean I can’t keep smiling and acting as if nothing was happening. My whole day I try to show my best, I pretend to be the same person I was before the pain started. When I’m tired I cannot pretend anymore, I have to be who I am now.”

13. “I’m emotionally drained. But I don’t want to appear weak or go into details. Saying, ‘I’m just tired’ is simpler sometimes.”

14. “I say ‘I’m tired,’ but what I mean is I am fatigued beyond exhaustion, I can barely function, I feel like I haven’t slept in days, my body and mind ache for restful rest!”

15. “When I say I am tired, it means wherever I am could make a good place to lay down and hopefully sleep. The concrete floor over there? Yeah that looks like an amazing place.”

16. “I’m out of spoons. Of juice. Of battery. I physically cannot muster the energy needed to complete the task(s) being asked of me.”

17. “I’ll stare off into the brain fog and when someone notices, auto respond, ‘I’m just tired.’ It’s so much easier not to have to explain something you know they likely don’t understand. My being tired can’t be fixed. Take a nap, cured. If only it were that simple.”

Source: 17 Things People With Chronic Illness Mean When They Say ‘I’m Tired’ | The Mighty

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[WEB SITE] Helping Others Understand: Post-Stroke Fatigue

[Helping Others Understand is an open-ended, intermittent series designed to support stroke survivors and family caregivers with helping friends and family better understand the nuances, complications and realistic expectations for common post-stroke conditions. If there is a specific post-stroke condition you’d like to see us address in future issues, we invite you to let us know: strokeconnection@heart.org.]


Stroke is unpredictable both in its arrival and in the consequences it leaves, but one common stroke deficit is fatigue. Some studies indicate that as many as 70 percent of survivors experience fatigue at some time following their stroke. Unlike exertional fatigue that we feel after working in the yard, post-stroke fatigue occurs from doing typical everyday tasks or sometimes from not doing anything. “It is a fatigue associated with the nervous system, which is quite difficult to understand,” said Jade Bender-Burnett, P.T., D.P.T., N.C.S., a neurological physical therapist in Falls Church, Virginia. “It’s very frustrating to the person who’s living with it because, unlike exertional fatigue, post-stroke fatigue doesn’t always resolve after you take a break, or get some rest.”

That has been Roman Nemec’s experience since surviving an ischemic stroke 11 years ago. It doesn’t seem to matter how much sleep he gets, “I walk around tired all the time, even after 9-10 hours of sleep,” he said from his home in Georgia.

This can be difficult for friends and family members to get their heads around because they have not likely experienced this kind of brain fatigue. Bender-Burnett has asked her clients who were marathoners prior to their stroke to compare the fatigue one feels following a marathon to post-stroke fatigue: “They said the fatigue you feel after damage to the brain is unlike any fatigue they’ve ever felt,” she said.

While there is no standardized scale for post-stroke fatigue, Bender-Burnett says that therapists distinguish between two types of fatigue. “Objective fatigue occurs when we can see physical, mental or cognitive changes,” she said. “With subjective fatigue we don’t see any changes, but the survivor will tell you that they’re feeling extremely weary and have no energy.”

For some this goes on for a few months after their stroke, for others, like Roman, it is persistent. Fatigue may be a side effect of medication. “Post-stroke fatigue is very individualized,” Bender-Burnett said. “One of the most frustrating parts of post-stroke fatigue is that it’s so unpredictable. Today, getting up, brushing your teeth and putting on your clothes may be fine, but tomorrow you may not be able to complete the morning routine without a rest break. That unpredictability is very frustrating for people and makes reintegration into daily life difficult.”

Post-stroke fatigue often changes over time. People report more and greater fatigue in the first six months. It’s episodic at first and seems to come out of nowhere: “They may be functioning well, and then all of a sudden they hit a wall,” she said. “It seems that as they get farther along in recovery, those hit-the-wall episodes decrease, and the lingering effect is ‘I just don’t have the energy to do all the things on my plate.’”

Life consequences span the spectrum from nuisance to career-ending. It can impact a survivor’s ability to function in unpredictable ways: As they tire, they may become clumsy or their speech may be affected. Their ability to understand, comprehend or recall may be compromised. Some people get irritable, while others experience increased emotional lability (crying or laughing with no apparent trigger). Bender-Burnett has worked with people who have made remarkable recoveries but were not able to return to work because of post-stroke fatigue.

Just as the consequences are individualized, so are the responses. If your energy is better in the morning, then take advantage of that. For mental fatigue, the most effective response is to sit quietly with low sensory stimulation, not necessarily take a nap. Some survivors may require regular and scheduled rest breaks or even a nap; that does not work for Roman: “I just live through it,” he said. “There are worse things than being tired. I feel good; I can get around; I can talk. Life is good compared to what it could be. Being tired all the time is not a big problem.”

Rhonda Hand, whose significant other, Tarvin, is a survivor, said: “In our household the fatigue issue is factored in before any event or activity and recuperation time after an event or activity. We just block off rest time like another activity; if we don’t, everything shuts down, including speech. Over the years, we have become much more proactive in scheduling appointments with anybody. There is nothing before 8 a.m. That’s when deep sleep is happening.”

Knowing your limits — and quitting before you hit them — is key to living with post-stroke fatigue. Survivors with fatigue have limited energy reserves, and if they get depleted, they take longer to replenish. “You don’t want push to the point just before you’re exhausted, you want to end on a high note, leaving some reserves,” Bender-Burnett said.

“We’re still learning about post-stroke fatigue from the healthcare perspective, and so I think it’s important that we all be willing to recognize it and have open communication about it,” Bender-Burnett said. “I urge family members and friends to come from a position of compassion and understanding rather than expectation that everything should be better, because, much like depression, others can’t always see it but, if you’re feeling it, it can be quite limiting.”

 

The Stroke Connection team knows that it can sometimes be hard for family and friends to understand how profoundly post-stroke fatigue may be impacting a survivor. We encourage you to share this article with the people in your life — and, for those pressed for time, we’ve created a quick-reference sheet  that you can print or share via email or socia

Source: Helping Others Understand: Post-Stroke Fatigue – Stroke Connection Magazine – Spring 2017

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[Abstract] The treatment of fatigue by non-invasive brain stimulation

Summary

The use of non-invasive brain neurostimulation (NIBS) techniques to treat neurological or psychiatric diseases is currently under development. Fatigue is a commonly observed symptom in the field of potentially treatable pathologies by NIBS, yet very little data has been published regarding its treatment. We conducted a review of the literature until the end of February 2017 to analyze all the studies that reported a clinical assessment of the effects of NIBS techniques on fatigue. We have limited our analysis to repetitive transcranial magnetic stimulation (rTMS) and transcranial direct current stimulation (tDCS). We found only 15 studies on this subject, including 8 tDCS studies and 7 rTMS studies. Of the tDCS studies, 6 concerned patients with multiple sclerosis while 6 rTMS studies concerned fibromyalgia or chronic fatigue syndrome. The remaining 3 studies included patients with post-polio syndrome, Parkinson’s disease and amyotrophic lateral sclerosis. Three cortical regions were targeted: the primary sensorimotor cortex, the dorsolateral prefrontal cortex and the posterior parietal cortex. In all cases, tDCS protocols were performed according to a bipolar montage with the anode over the cortical target. On the other hand, rTMS protocols consisted of either high-frequency phasic stimulation or low-frequency tonic stimulation. The results available to date are still too few, partial and heterogeneous as to the methods applied, the clinical profile of the patients and the variables studied (different fatigue scores) in order to draw any conclusion. However, the effects obtained, especially in multiple sclerosis and fibromyalgia, are really carriers of therapeutic hope.

Source: The treatment of fatigue by non-invasive brain stimulation

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[WEB SITE] All Fatigue is Not Created Equal: Why it Matters and What it Means for Pain Management

Have you ever felt so tired that you wished you could hibernate? Or so out of energy that you wanted to plug into a wall outlet and recharge?  Even if you haven’t, you’ve probably experienced the fatigue of a long day at work, a workout, or a poor night of sleep. This feeling is not only physical; emotional and mental fatigue can lead to irritability, difficulty concentrating, or in extreme cases, to locking ourselves in our room and watching reruns on television while our friends go out and enjoy themselves.

For people with chronic pain conditions, feelings of fatigue may be the norm rather than the exception. In fact, fatigue is one of the most common symptoms reported by patients with chronic pain, and increases as the intensity of the pain increases [1-2]. Chronic fatigue syndrome is highly comorbid with chronic pain conditions [3-4], and patients with fibromyalgia describe “fibro fog,” a set of symptoms characterized by difficulty with concentrating and performing other mental tasks [5].

Why does fatigue matter? It predicts low quality of life and poor functioning in a number of chronic pain populations [6-7], including cancer [8] and lower back pain [9]. In our work, we found that fatigue predicts low satisfaction with life in patients with chronic orofacial pain (pain in the head and face), and partially explains why pain is associated with psychological distress [2,10]. Yet, despite the negative impact of fatigue on functioning, it is still largely treated as a single symptom. Our team wanted to take a more nuanced approach and test whether different subtypes of fatigue (general fatigue, mental fatigue, emotional fatigue, physical fatigue, and vigor), as well as total fatigue (as a single symptom), predicted pain-related interference with social and recreational activities. To do this, we examined medical and psychological data from over 2,000 patients seeking treatment for chronic orofacial pains at a university orofacial pain center. A full version of the report can be found here [11], but below I summarize the main results.

First, total fatigue (as a single symptom) significantly predicted pain interference, above and beyond pain intensity, depression, psychological distress, and poor sleep! This suggests fatigue is more than feeling tired or lacking energy and is likely influenced by a number of factors. In fact, there’s moderately strong evidence for a central governing mechanism that monitors an array of cognitive, emotional, and physiological inputs and produces feelings of fatigue to prevent catastrophic overexertion [12-13]. A pretty clever protective mechanism! How this central governor influences and is modulated by pain remains an exciting area for future research, and one with much clinical relevance.

A second interesting finding was that the fatigue subtypes did not overlap as much as might be expected (13 – 40% of shared variance). Most of the variance in any one type of fatigue was not accounted for by the other types, suggesting we can feel emotionally tired but physically energized, just as we can feel mentally tired but generally energized, for example. Think of a long airplane ride. After a few hours, you might feel eager to move but unable to concentrate. This nuanced condition of low physical fatigue but high mental fatigue is lost when we treat fatigue as a single symptom. Examples of being fatigued in one domain but not another abound, but pain research takes a less nuanced approach and treats all of fatigue as one and the same.

The reason this matters – and this is the third interesting finding- is that each of these fatigue subtypes predicts outcomes differently. In our study, physical fatigue and lack of vigor were the only two significant predictors of pain interference: general, emotional, and mental fatigue were not significantly associated. The more physically fatigued people felt, or the less energy they had, the more pain disrupted their social and recreational activities. This was the first study to look at how specific subtypes of fatigue predicted pain outcomes.

Clinically, these findings suggest that perhaps we should be looking at people’s fatigue profiles to target individualized treatment. If someone reports high mental fatigue, then simplifying medication regiments (and implementing physical aids that promote medication adherence such as alarm clocks and reminders) may be particularly important. If, on the other hand, someone else has particularly high physical fatigue, then a cognitive behavioral intervention aimed at reducing physical fatigue and improving exercise might be most helpful. And if a third person is particularly high on emotional fatigue, they might benefit most from learning emotion regulation strategies and interpersonal communication skills. Although these ideas sound good in theory, more work is needed on targeted interventions to fatigue subtypes to test if they would indeed promote successful outcomes in pain patients.

About Ian Boggero

Ian Boggero is a clinical psychology graduate student at the University of Kentucky, but is originally from Los Angeles and did his undergraduate studies at UCLA. His research interests involve the psychological and social factors that promote adaptive responses to pain. Clinically, he has worked with orofacial pain, chronic lower back pain, phantom limb pain, and fibromyalgia populations, among others. Aside from pain, Ian enjoys hiking, cooking, playing soccer and chess, but most of all, spending time with his wonderful wife (who also shares his clinical and research interest in management). For more information, please see https://psychology.as.uky.edu/users/iabo222

References:

  1. [1] Hunt IM, Silman AJ, Benjamin S, McBeth J, Macfarlane GJ. The prevalence and associated features of chronic widespread pain in the community using the ‘Manchester’ definition of chronic widespread pain.Rheumatol 1999;38(3): 275-279. doi: 10.1093/rheumatology/38.3.275
  1. [2] Boggero IA, Rojas MV, Carlson CR, de Leeuw R. Satisfaction with life in orofacial pain disorders: Associations and theoretical implications. J Oral Facial Pain Headache 2016; 30(2): 99-106. doi: 10.11607/ofph.1526.
  1. [3] Clauw DJ, Chrousos GP. Chronic pain and fatigue syndromes: overlapping clinical and neuroendocrine features and potential pathogenic mechanisms. Neuroimmunomodulat 1997; 4: 134-153. doi: 10.1159/000097332
  1. [4] Aaron LA, Burke MM, Buchwald D. Overlapping conditions among patients with chronic fatigue syndrome, fibromyalgia, and temporomandibular disorder. Arch Intern Med 2000; 160: 221-227. doi: 10.1001/archinte.160.2.221
  1. [5] Williams DA, Clauw DJ, Glass JM. Perceived cognitive dysfunction in fibromyalgia syndrome.J Musculoskelet Pain 2011; 19(2): 66-75. doi: 10.3109/10582452.2011.558989
  1. [6] Sturgeon JA, Darnall BD, Kao MCJ, Mackey SC. Physical and psychological correlates of fatigue and physical function: a collaborative health outcomes information registry (CHOIR) study. J Pain 2015:16:291-298. doi: 10.1016/j.jpain.2014.12.004
  1. [7] de Leeuw R, Studts JL, Carlson CR. Fatigue and fatigue-related symptoms in an orofacial pain population. Oral Surg Oral Med O 2005; 99:168-174. doi: 10.1016/j.tripleo.2004.03.001
  1. [8] Servaes P, Verhagen C, Bleijenberg G. Fatigue in cancer patients during and after treatment: prevalence, correlates and interventions.Europe J Cancer 2002;38(1): 27-43. doi: 10.1016/S0959-8049(01)00332-X
  1. [9] Feuerstein M, Carter RL, Papciak AS. A prospective analysis of stress and fatigue in recurrent low back pain. Pain 1987; 3:333-344. doi: 10.1016/0304-3959(87)90162
  1. [10] Boggero IA, Kniffin TC, de Leeuw R, Carlson CR. Fatigue mediates the relationship between pain interference and distress in patients with persistent orofacial pain. J Oral Facial Pain Headache 2014; 28:38-45. doi: 10.11607/jop.1204
  1. [11] Boggero, I. A., Rojas Ramirez, M. V., & Carlson, C. R. (2017). All fatigue is not created equal: The association of fatigue and its subtypes on pain interference in orofacial pain. The Clinical Journal of Pain, 33(3), 231-237. doi: 10.1097/AJP.0000000000000391
  1. [12] Evans DR, Boggero IA, Segerstrom SC. Explaining self-regulatory fatigue and ‘ego depletion’: Lessons from physical fatigue. Personality Soc Psych Rev 2016; 20(4): 291-310. doi: 10.1177/1088868315597841
  1. [13] Noakes TD. The central governor model in 2012: Eight new papers deepen our understanding of the regulation of human exercise performance. British J Sports Med 2012; 46(1): 1-3. doi: 10.1136/bjsports-2011-090811

Source: All Fatigue is Not Created Equal: Why it Matters and What it Means for Pain Management

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[Abstract] Interventions for post-stroke fatigue.  

Abstract

BACKGROUND: Post-stroke fatigue (PSF) is a common and distressing problem after stroke. The best ways to prevent or treat PSF are uncertain. Several different interventions can be argued to have a rational basis. OBJECTIVES: To determine whether, among people with stroke, any intervention reduces the proportion of people with fatigue, fatigue severity, or both; and to determine the effect of intervention on health-related quality of life, disability, dependency and death, and whether such intervention is cost effective.

SEARCH METHODS: We searched the Cochrane Stroke Group Trials Register (last searched May 2014), Cochrane Central Register of Controlled Trials (The Cochrane Library, 2014, Issue 4), MEDLINE (1950 to May 2014), EMBASE (1980 to May 2014), CINAHL (1982 to May 2014), AMED (1985 to May 2014), PsycINFO (1967 to May 2014), Digital Dissertations (1861 to May 2014), British Nursing Index (1985 to May 2014), PEDro (searched May 2014) and PsycBITE (searched May 2014). We also searched four ongoing trials registries, scanned reference lists, performed citation tracking of included trials and contacted experts.
SELECTION CRITERIA: Two review authors independently scrutinised all titles and abstracts and excluded obviously irrelevant studies. We obtained the full texts for potentially relevant studies and three review authors independently applied the inclusion criteria. We included randomised controlled trials (RCTs) that compared an intervention with a control, or compared different interventions for PSF.
DATA COLLECTION AND ANALYSIS: Two review authors independently extracted data and assessed risk of bias for each included trial. The primary outcomes were severity of fatigue, or proportion of people with fatigue after treatment. We performed separate analyses for trials investigating efficacy in treating PSF, trials investigating efficacy in preventing PSF and trials not primarily investigating efficacy in PSF but which reported fatigue as an outcome. We pooled results from trials that had a control arm. For trials that compared different potentially active interventions without a control arm, we performed analyses for individual trials without pooling.We calculated standardised mean difference (SMD) as the effect size for continuous outcomes and risk ratio (RR) for dichotomous outcomes. We pooled the results using a random-effects model and assessed heterogeneity using the I(2) statistic. We performed separate subgroup analyses for pharmacological and non-pharmacological interventions. We also performed sensitivity analyses to assess the influence of methodological quality. MAIN RESULTS: We retrieved 12,490 citations, obtained full texts for 58 studies and included 12 trials (three from the 2008 search and nine from the 2014 search) with 703 participants. Eight trials primarily investigated the efficacy in treating PSF, of which six trials with seven comparisons provided data suitable for meta-analysis (five pharmacological interventions: fluoxetine, enerion, (-)-OSU6162, citicoline and a combination of Chinese herbs; and two non-pharmacological interventions: a fatigue education programme and a mindfulness-based stress reduction programme). The fatigue severity was lower in the intervention groups than in the control groups (244 participants, pooled SMD -1.07, 95% confidence interval (CI) -1.93 to -0.21), with significant heterogeneity between trials (I(2) = 87%, degrees of freedom (df) = 6, P value < 0.00001). The beneficial effect was not seen in trials that had used adequate allocation concealment (two trials, 89 participants, SMD -0.38, 95% CI -0.80 to 0.04) or trials that had used adequate blinding of outcome assessors (four trials, 198 participants, SMD -1.10, 95% CI -2.31 to 0.11).No trial primarily investigated the efficacy in preventing PSF.Four trials (248 participants) did not primarily investigate the efficacy on fatigue but other symptoms after stroke. None of these interventions showed any benefit on reducing PSF, which included tirilazad mesylate, continuous positive airway pressure for sleep apnoea, antidepressants and a self management programme for recovery from chronic diseases.
AUTHORS’ CONCLUSIONS: There was insufficient evidence on the efficacy of any intervention to treat or prevent fatigue after stroke. Trials to date have been small and heterogeneous, and some have had a high risk of bias. Some of the interventions described were feasible in people with stroke, but their efficacy should be investigated in RCTs with a more robust study design and adequate sample sizes.

Source: Interventions for post-stroke fatigue. | Nursing VHL Search Portal

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[ARTICLE] Immediate affective responses of gait training in neurological rehabilitation: A randomized crossover trial – Full Text HTML

Abstract

Objective: To examine the immediate effects of physical therapy and robotic-assisted gait training on affective responses of gait training in neurological rehabilitation.

Design: Randomized crossover trial with blinded observers.

Patients: Sixteen patients with neurological disorders (stroke, traumatic brain injury, spinal cord injury, multiple sclerosis).

Methods: All patients underwent 2 single treatment sessions: physical therapy and robotic-assisted gait training. Both before and after the treatment sessions, the self-report Mood Survey Scale was used to assess the effects of the treatment on distinct affective states. The subscales of the Mood Survey Scale were tested for pre–post changes and differences in effects between treatments, using non-parametric tests.

Results: Fourteen participants completed the study. Patients showed a significant increase in activation (r = 0.55), elation (r = 0.79), and calmness (r = 0.72), and a significant decrease in anger (r = 0.64) after robotic-assisted gait training compared with physical therapy.

Conclusion: Affective responses might be positively influenced by robotic-assisted gait training, which may help to overcome motivational problems during the rehabilitation process in neurological patients.

Introduction

Patients with neurological impairment are known to have reduced quality of life and increased risk for depressive symptoms, which may hinder their ability to perform daily rehabilitation programmes, such as physical therapy (PT) or robotic-assisted gait training (RAGT) (1). During the continuum of rehabilitation it is necessary to consider factors such as choice and enjoyment in order to determine specifically how an individual would participate in rehabilitation programmes. The inclusion of participation scales is recommended when assessing the outcome of rehabilitation programmes (2). According to Self-Determination Theory (3), positive affective responses (e.g. activation, elation, or calmness) are connected with high intrinsic motivation and are an important regulation process in human behaviour. Therefore affective responses to the treatment sessions, as defined by Ekkekakis & Petruzello (4), might be important predictors of motivation, adoption, and maintenance of treatment regimes in the rehabilitation process.

Fatigue is a common and distressing complaint among people with neurological impairment (5). Patients often are afraid that engagement in exercise may increase fatigue (6). In patients with traumatic brain injury, “lack of energy” was rated as 1 of the top 5 problems for participation (7). Therefore it is important to emphasize that it is more likely that a higher level of energy will be achieved after exercise (8, 9). Although not yet a widely recognized determinant of exercise behaviour, affective valence is viewed in psychology and behavioural economics as one of the major factors in human decision-making (10). Findings from exercise psychology have demonstrated that the affective components of pleasure and activation might be crucial for bridging the intention–behaviour gap at the beginning of engagement in exercise (10). Regular participation in physical activity, in the long-term, may be mediated by an individual’s belief in the exercise–psychological wellbeing association. It may also lead to anti-depressive effects (11). Both PT and RAGT can be considered as forms of physical activity; therefore one might speculate that the effects mentioned above could be transferred to neurological patients. While increases in energy and mood in response to a single bout of moderate intensity exercise have been shown in healthy people and several risk-groups (6, 8, 9), no such study has been carried out involving neurological patients.

To our knowledge, only 2 studies concerning RAGT and psychological effects have been published. Koenig et al. (12) described a method to observe mental engagement during RAGT. Recently, Calabro et al. (13) reported positive long-term effects of RAGT on mood and coping strategies in a case study. To our knowledge, apart from these studies, affective responses have not been researched in PT or RAGT.

Thus, the aim of this study was to determine, for patients with neurological impairment: (i) whether a single session of PT and RAGT has immediate effects on affective responses (e.g. activation, elation, or calmness) and; (ii) whether possible affective responses differ between PT and RAGT.

Continue —> Journal of Rehabilitation Medicine – Immediate affective responses of gait training in neurological rehabilitation: A randomized crossover trial – HTML

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[WEB SITE] Lost & Found: Caps, Sunglasses, and Earplugs – Strategies for Coping with Sensory Hypersensitivity – brainline.org

If it seems like your sense of touch, taste, smell, hearing, or vision is extra sensitive or heightened after your brain injury, it’s not your imagination. Sensory hypersensitivities are another major, yet not as obvious, contributor to fatigue and overload after brain injury. What we experience with our senses is essentially more information for our injured brains to try to process and organize. You can have difficulties processing sensory information just like any other information in your brain. Some examples of sensory hypersensitivities are:

  • Sounds that you barely noticed before are alarming and startle you.
  • It feels like you have megaphones in your ears.
  • Background sounds and stimulating environments become overwhelming.
  • Fluorescent and bright lights give you headaches.
  • Clothing that was comfortable before feels irritating now.
  • Large gatherings of people feel overwhelming.

Pain and fatigue can intensify sensory hypersensitivities, putting you in a hyper-sensitive or hyper-vigilant state. When you are in a hyper-sensitive or hyper-vigilant state, even subtle stimulants feel overwhelming. Especially sights and sounds that didn’t bother you before, may now trigger anxiety and the fight-or-flight response where your whole being feels threatened and out of control. You may shut down and not be able to do any more or you may feel compelled to escape from the situation. It can be very taxing, physically and mentally.

Stress management, movement and using all of your senses can help your brain organize and integrate the senses. This is similar to what children do. Consider how physically active children are as they grow and develop!

See Brain Recharging Breaks at the end of this chapter for some basic meditation techniques. Meanwhile, following are suggestions for coping with sensory hypersensitivities.

General Coping Suggestions

Limit exposure to avoid sensory overload.

  • Avoid crowds and chaotic places where there are a lot of stimuli, like shopping malls.
  • Do shopping and errands early in the week and early in the day, when stores are less crowded and quieter.
  • Shop in smaller, quieter stores when possible.
  • Eat out in restaurants when they are quieter, in between regular meal times.
  • Hold conversations in a quiet place.
  • Ask people to please speak one at a time. Explain that you’d really like to hear what everyone has to say but you can only hear one person at a time.
  • Sleep during car trips.
  • If you want to attend a function that you expect will be taxing, plan to stay only a short while. Take your cap, sunglasses and earplugs. Sit towards the back to minimize the sound and where you can easily exit to a quieter place or the car.

Monitor your pain, stress and fatigue levels.

Lights and sounds will bother you the most when you are stressed or fatigued. If you are feeling especially sensitive, use it as a cue that you need to take a break and use some relaxation techniques.

Try avoiding nicotine, caffeine and alcohol.

They may make the symptoms worse. If you have vertigo, try limiting your salt intake, which can cause fluid retention. Consider strengthening exercises for your neck with the guidance of a physical therapist.

When you are starting to feel stressed or anxious, try incorporating another sense.

  • Put something in your mouth to chew or suck on. Strong flavors like peppermint or cinnamon are especially effective.
  • Put on some soothing music.
  • Apply some deep pressure. Give yourself a hug or press your palms firmly together or on the table. Squeeze the steering wheel if you are driving the car.

Experiment with activities and alternative therapies that involve your senses.

Listen to music, experiment with movement, dance, yoga, water, art, aromatherapy, etc.

Challenge your sensitivities.

Gradually increase your exposure and tolerance when using earplugs, sunglasses, etc.
Don’t eliminate the senses completely or you set yourself up for super-sensitivity.

Specific Coping Strategies

Sensitivities to sound

  • Limit your exposure to noisy stores and loud situations like sporting events, the movie theatre and children’s school activities. Don’t participate or plan to stay for a limited amount of time. Sit on the outskirts so you can gracefully escape to a quieter place if needed.
  • Use earplugs, try different kinds, and carry them with you.
  • Use headphones for TV and music:
    • For others, when you don’t want to hear it.
    • For yourself, when you want to hear it better.
  • Minimize distractions from snacking while doing things like working in groups or playing games. Use bowls for food instead of eating directly from noisy bags.
  • Add some background sound – a fan, white noise machine, soothing music.
  • Remove yourself from the situation and go to a quieter place as soon as possible, even the bathroom, when you feel overwhelmed or anxious. Then try:
    • Closing your eyes
    • Taking slow deep stomach breaths
    • Putting an ice pack on your forehead and eyes
  • Gradually expose yourself to different sounds and louder sounds to increase your tolerances.

Sensitivities to light

  • Avoid bright light and fluorescent lights.
  • Use sunglasses or a cap with a brim, even indoors.
  • Try yellow tinted glasses if florescent lights are a problem.
  • Try polarized sunglasses if driving glare is a problem.
  • Try yellow tinted glasses if night driving is a problem.
  • Make sure you are getting plenty of vitamin A (but not too much!).
  • Eat orange colored fruits and vegetables like carrots, sweet potatoes, squash, and cantaloupe.
  • Take a moment to just close your eyes for a few minutes when you are starting to feel stressed or anxious. This blocks out the visual stimuli.

Sensitivities to touch, taste, and smell

  • Experiment! Cultivate an awareness of how things feel, taste and smell.
  • Rub different textures on your arms, increasing the intensity to gradually decrease sensitivities.
  • Add texture, contrasting temperatures and flavors to your food, like ice cream with crunchy nuts or chips with spicy taco sauce.
  • Notice the textures.
  • Pay attention to smells.
  • How do different aromas make you feel?

If your sense of smell is altered, make sure to have functioning smoke and gas detectors in your home.

Doing cognitive work

  • Plan to do cognitive work when your environment is quiet. Eliminate as many distractions and interruptions as possible.
  • Screen out distractions by using earplugs or headphones, playing soothing music, or using a fan or white noise machine if you have sensitivities to sound.
  • Turn down the volume on the phone and let the machine get it.
  • Work in an uncluttered space or use a three sided table screen, to help screen out visual distractions.
  • Give children headphones for the TV if you are having trouble screening it out.
  • Do your “thinking” work while children are in school or asleep.
  • Still having trouble concentrating? Try bringing in another sense.
    • Put on some soothing nature or instrumental music, something without words at a low volume.
    • Try chewing or sucking on something while you are working. Coffee stirrers can substitute for fingernails. Strong flavored or fizzy candies and gum can aid alertness.
    • Try using some deep pressure by giving yourself a hug, pressing your palms strongly against each other or on the table.
    • Try sitting on a large therapy ball while you work. A great strategy if you have trouble sitting still!
  • Take a physical break, every 15 min. at first. Resist the urge to push through. I know it feels counter-intuitive but taking breaks will actually help you work longer! Gradually you will find you can increase the time between breaks.
    • Use a timer – without a ticking sound!
    • Pause and stretch, drink some water or make a cup of tea, walk around the house or the yard, rock in a chair, walk the dog, pat the cat.

Visual Processing Problems

Vision is an extremely important and complex source of sensory information. What you see with your eyes travels through your brain to the back area of your brain, where it is processed in the occipital lobe. There is a lot of territory between the eyes and the back of the brain where an injury can occur. The occipital lobe may be damaged directly from impact to the back of the head or it may be damaged indirectly from the ricochet of the brain inside the skull when the front of the brain is impacted. Damage to the occipital lobe frequently occurs in car accidents, falls and sports injuries. Even subtle visual problems following a brain injury can have a significant impact on cognition and functioning.

I wish I had known about visual problems and visual therapy when I had my car accident. I thought I was really going crazy! Fortunately for me, my issues improved with time but not without mishaps, like falling off a curb!

Some common problems after a brain injury related to vision include:

  • Double vision
  • Trouble tracking words on a page
  • Impaired depth perception
  • Hypersensitivities to light
  • Difficulties remembering and recalling information that is seen
  • Difficulties “filling in the gaps” or completing a picture based on seeing only some of the parts
  • Trouble seeing objects to the side
  • Low tolerances to changing light or clutter
  • Impaired balance, bumping into objects
  • Feeling overwhelmed when there is a lot of visual stimuli

If you notice problems in areas related to visual processing, please consult a visual therapist or a neuroopthalmologist, they can help!

Tips:

  • Don’t eliminate any sense completely or you set yourself up for a super-sensitivity.
  • Gradually expose yourself to more light, sound, touch, smell, and taste.
  • Be patient, in many cases your sensory hypersensitivities will decrease in time!
  • Ask for physical therapy or occupational therapy with a therapist with a background in sensory integration for help with sensory sensitivities.

Some good news about sensory hypersensitivity is that it is also associated with a heightened sense of awareness and intuition. You may find that you feel more aware of your intuition and more creative since your brain injury. This is not uncommon. Enjoy!

Brain Recharging Breaks

If I had to choose one strategy that helped me the most after my brain injury, it would be learning to meditate. Meditation is especially helpful when you are experiencing sensory overload. It can help you calm yourself down from that hyper-sensitive state. It was also the only way I have found to give my brain a rest, to put it temporarily in a “cast”, like you would a broken limb. Often, after meditating for 15-20 minutes, the “logjam” in my brain clears up and I am somehow able to think again!

I recommend using some stress management or meditation techniques at least once a day. Plan it, schedule it in your planner, make it part of your daily routine. Meditation is not as mysterious as you might think. Try these basic steps:

  • Get in a comfortable position on the bed, in a recliner or even in the car; uncross your arms and legs. Cover yourself with a blanket if you are cool.
  • Close your eyes and do some slow deep breathing.
  • Slowly inhale, expanding your stomach and counting to 7.
  • Exhale gradually, contracting your stomach towards your spine, counting to 7.

Repeat. Repeat. Repeat.

When you are feeling more relaxed, as you continue your slow deep breathing, experiment with the following suggestions to increase the effectiveness of the experience.

Do a body scan checking for areas of pain or stress.

  • Eyes closed, inhale deeply, picture your forehead and notice any stress or pain.
  • Exhale and imagine the pain floating away with your exhale.
  • Inhale, picture your eyebrows and notice any stress or pain. Exhale and release it, imagining the stress floating away.
  • Repeat for your eyes, ears, jaw, throat, back of neck, shoulders … down to your toes. Breathe in relaxation, breathe out stress and pain.

Notice how you feel after you get to your toes!

  • Visualize or imagine yourself in a warm, secure, relaxing, happy, peaceful place; floating on a cloud, floating in the water, or recalling a happy memory.
    • Continue slow deep breathing.
  • Focus on a picture or artwork that you like, noticing each detail.
    • Continue slow deep breathing.
  • Listen to music, any music that is soothing to you. Nature sounds or instrumental music is a good place to start experimenting.
    • Continue slow deep breathing.
  • Use aromatherapy – any scent that smells good to you. Favorite scents are often from childhood memories!
    • Continue slow deep breathing.

Strive to let go of that never-ending tape of worries and “shoulds” that plays in your head. Focus on your senses – your breath, the music, a relaxing place, a comforting aroma. If thoughts drift in, gently push them away. It gets easier with practice, you’ll find what works best for you and you’ll be amazed at how much it helps you!

Excerpted from Lost & Found: A Survivor’s Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster. © 20ll by Lash & Associates Publishing/Training Inc. Used with permission. Click here for more information about the book.

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Source: Lost & Found: Caps, Sunglasses, and Earplugs

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[BLOG] Home After a Stroke – Work Smarter Instead of Harder

 

About Me

I am an occupational therapist (OT) who specialized in stroke rehab.  I continued my education by having a stroke in 2004 that paralyzed my dominant right side.  I still walk with a brace and cane, regained only partial use of my hemiplegic hand, and still have slurred speech when I’m tired.

I live alone so I am both the caregiver and the stroke survivor.  I am divorced and was not able to have children.  My two middle-aged bachelor brothers live 800 miles away and two life-long friends live 1,200 miles away.  My parents are dead.  Thank goodness I have a small army of local friends.

I had my stroke a year after I completed my doctorate in cognitive psychology.  My stroke rehab felt like my last major learning experience so I wrote a book called My Last Degree: A Therapist Goes Home After a StrokeMy sense of purpose continued to grow as I developed Power Point presentations for stroke survivor support groups, rehab professionals, and OT students.  I live in New Jersey, U.S.A.  E-mail me at homeafterastroke3@verizon.net.

The 2nd edition has 44 photos that make it easier to understand what I am describing.  This edition includes solutions to challenges that occur long after formal rehab is over.

There are reports of Amazon listing books as “out of stock” and imposing long delivery times.  You can order this book from the publisher at www.booklocker.com.

Source: Home After a Stroke

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[WEB SITE] How Bad science misled millions with chronic fatigue syndrome patients

If your doctor diagnoses you with chronic fatigue syndrome, you’ll probably get two pieces of advice: Go to a psychotherapist and get some exercise. Your doctor might tell you that either of those treatments will give you a 60 percent chance of getting better and a 20 percent chance of recovering outright. After all, that’s what researchers concluded in a 2011 study published in the prestigious medical journal the Lancet, along with later analyses.

Problem is, the study was bad science.

And we’re now finding out exactly how bad.

Under court order, the study’s authors for the first time released their raw data earlier this month. Patients and independent scientists collaborated to analyze it and posted their findings Wednesday on Virology Blog, a site hosted by Columbia microbiology professor Vincent Racaniello.

The analysis shows that if you’re already getting standard medical care, your chances of being helped by the treatments are, at best, 10 percent. And your chances of recovery? Nearly nil.

The new findings are the result of a five-year battle that chronic fatigue syndrome patients — me among them — have waged to review the actual data underlying that $8 million study. It was a battle that, until a year ago, seemed nearly hopeless.

When the Lancet study, nicknamed the PACE trial, first came out, its inflated claims made headlines around the world. “Got ME? Just get out and exercise, say scientists,” wrote the Independent, using the acronym for the international name of the disease, myalgic encephalomyelitis. (Federal agencies now call it ME/CFS.) The findings went on to influence treatment recommendations from the CDC, the Mayo Clinic, Kaiser, the British National Institute for Health and Care Excellence, and more.

But patients like me were immediately skeptical, because the results contradicted the fundamental experience of our illness: The hallmark of ME/CFS is that even mild exertion can increase all the other symptoms of the disease, including not just profound fatigue but also cognitive deficits, difficulties with blood pressure regulation, unrestorative sleep, and neurological and immune dysfunction, among others.

Soon after I was diagnosed in 2006, I figured out that I had to rest the moment I thought, “I’m a little tired.” Otherwise, I would likely be semi-paralyzed and barely able to walk the next day.

The researchers argued that patients like me, who felt sicker after exercise, simply hadn’t built their activity up carefully enough. Start low, build slowly but steadily, and get professional guidance, they advised. But I’d seen how swimming for five minutes could sometimes leave me bedbound, even if I’d swum for 10 minutes without difficulty the day before. Instead of trying to continually increase my exercise, I’d learned to focus on staying within my ever-changing limits — an approach the researchers said was all wrong.

A disease ‘all in my head’?

The psychotherapy claim also made me skeptical. Talking with my therapist had helped keep me from losing my mind, but it hadn’t kept me from losing my health. Furthermore, the researchers weren’t recommending ordinary psychotherapy — they were recommending a form of cognitive behavior therapy that challenges patients’ beliefs that they have a physiological illness limiting their ability to exercise. Instead, the therapist advises, patients need only to become more active and ignore their symptoms to fully recover.

In other words, while the illness might have been triggered by a virus or other physiological stressor, the problem was pretty much all in our heads.

By contrast, in the American research community, no serious researchers were expressing doubts about the organic basis for the illness. Immunologists found clear patterns in the immune system, and exercise physiologists were seeinghighly unusual physiological changes in ME/CFS patients after exercise.

I knew that the right forms of psychotherapy and careful exercise could help patients cope, and I would have been thrilled if they could have cured me. The problem was that, so far as I could tell, it just wasn’t true.

A deeply flawed study

Still, I’m a science writer. I respect and value science. So the PACE trial left me befuddled: It seemed like a great study — big, controlled, peer-reviewed — but I couldn’t reconcile the results with my own experience.

So I and many other patients dug into the science. And almost immediately we saw enormous problems.

Before the trial of 641 patients began, the researchers had announced their standards for success — that is, what “improvement” and “recovery” meant in statistically measurable terms. To be considered recovered, participants had to meet established thresholds on self-assessments of fatigue and physical function, and they had to say they felt much better overall.

But after the unblinded trial started, the researchers weakened all these standards, by a lot. Their revised definition of “recovery” was so loose that patients could get worse over the course of the trial on both fatigue and physical function and still be considered “recovered.” The threshold for physical function was so low that an average 80-year-old would exceed it.

In addition, the only evidence the researchers had that patients felt better was that patients said so. They found no significant improvement on any of their objective measures, such as how many patients got back to work, how many got off welfare, or their level of fitness.

But the subjective reports from patients seemed suspect to me. I imagined myself as a participant: I come in and I’m asked to rate my symptoms. Then, I’m repeatedly told over a year of treatment that I need to pay less attention to my symptoms. Then I’m asked to rate my symptoms again. Mightn’t I say they’re a bit better — even if I still feel terrible — in order to do what I’m told, please my therapist, and convince myself I haven’t wasted a year’s effort?

Many patients worked to bring these flaws to light: They wrote blogs; they contacted the press; they successfully submitted carefully argued letters and commentaries to leading medical journals. They even published papers in peer-reviewed scientific journals.

They also filed Freedom of Information Act requests to gain access to the trial data from Queen Mary University of London, the university where the lead researcher worked. The university denied most of these, some on the grounds that they were “vexatious.”

Critics painted as unhinged

The study’s defenders painted critics as unhinged crusaders who were impeding progress for the estimated 30 million ME/CFS patients around the world. For example, Richard Horton, the editor of the Lancet, described the trial’s critics as “a fairly small, but highly organised, very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients.”

Press reports also alleged that ME/CFS researchers had received death threats, and they lumped the PACE critics in with the purported crazies.

While grieving for my fellow patients, I seethed at both the scientists and the journalists who refused to examine the trial closely. I could only hope that, eventually, PACE would drown under a slowly rising tide of good science, even if the scientific community never recognized its enormous problems.

more —> How Bad science misled millions with chronic fatigue syndrome patients | Private Medical

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[Abstract] Fatigue detection and estimation using auto-regression analysis in EEG

Abstract:

Estimation of fatigue is a required criteria in the field of physiology. The estimation of muscle fatigue and its development in the brain signals can provide a level of endurance among athletes and limits of a persons in doing physical tasks. In this paper a technique for detecting and estimating the fatigue development using regression parameters for EEG signals is discussed. The study of 14 subjects was undertaken and analysed for the fatigue development using Auto-Regression(AR) model. The behaviour of the error function obtained is analysed for the prediction of the stages and limits of muscle fatigue development.

I. Introduction

Muscle fatigue is a phenomenon associated with the muscle contraction. It is understood as the reduction in the ability of maximal force generation by the muscle with time, during its stressing, as the muscle contraction keeps on increasing. The nervous system’s limitation to generate sustainable signals and the reduction of ability of muscle fiber to contract are two major factors contributing to fatigue development [1]. Fatigue development limits the performance and capability of the individual in sports, long stretch driving conditions and in rigourous day to day activities. Hence a parameter that can estimate the fatigue levels and provide a break point for maximum fatigue can be useful for physiology and in other areas such as labour. People working under mines can be monitored for the fatigue break point and the overall productivity of such areas can be increased by proper analysis. The fatigue development in a person can be analysed via number of methods based on physiological changes. These include Electroencephalogram (EEG), Elec-tromyography(EMG), and Heart Rate Variability(HRV). Zadry et.al. [2] reported the increase in alpha band power level of EEG with time for fatigue development [3]. Ali et.al. also reported increase in RMS values of different bands in EEG [4]. Few studies measure brain activity in light repetitive task using EEG [5] to measure drowsiness or fatigue on drivers [6] [7] and night work [8] [9]. The EEG analysis for overall fatigue has been the focus of research, but research for specific muscle fatigue detection has been limited. The EEG based detection of fatigue has the advantage of quantitative based assessment. But, for real time application perspective faster computational power and signal processing methods are required. One of the challenges based on EEG based approach is the disturbances and contamination of the signal from eyes blinking action, muscle noise by movements and instrumental noises like line noise, electronic interferences [10]. Another problem is imposed by the inter-variability and intra-variability in EEG dynamics accompanying loss of alertness [11].

Source: Fatigue detection and estimation using auto-regression analysis in EEG – IEEE Xplore Document

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