What pTBI-cf (and similarly CFS) feels like

 

 

 

 

 

 

 

 

 

 

 

Chronic fatigue is the most common symptom following head injury

 

When you have pTBI-cf or cfs you have unrestful sleep, tired and fatigued all the time, episodes when it’s worse, brain fog confusion, aches, post exertional malaise, dizzyness.

 

You feel flattened, like there’s 1000 ton blocks all over, and it’s impossible to move and drag yourself from room to room.

 

Uncomfortably numb like in a vacuum yet at same time agitated mentlyphys wth no feel relief. Blues Like the Sunday Blues blahs ickyinsd, old and overwhlmd and feel like in jail for crime didn’t commit

 

Like the Flu.

 

hibernation dauer state response where everything is telling you to sleep, when first came on and lasting several years it felt like cells were screaming out and or dying and I was panicked to find a solution to what I considered Lyme’s. I hoped in being loud enough, if it wasn’t Lyme’s the doctors would have to come up with something and that wasn’t the case.

 

dream feel hard move punch run etc slow, have plan like 'ok go from here to that room, do sundries then rest there etc, know help there hard to get to, cant believe how exhausting idea of sending simple text msg, and things to cleanhouse as it were also seems, generally happy go lucky and don't want to be this way and put that out there, and wish express, hard with meds.

 

With this lack of energy or focus, you can’t keep up with anything. Forget doing chores when walking from room to room is sometimes the extent cfs patients can muster! What is most egregious is watching everything pass by without keeping up with as well as people places things events shopping cooking cleaning laundry.

 

you watch as all your duties and responsibilities and missed opportunities pile up as you watch your life drift asway, you feel stuck and episodes last for days sometimes weeks months years and you have to plan how much energy you have to do things and how long it will take to recover, depending on your socialspherethose around either continue to expect the same as before or don’t understand and much energy is expended explaining.

 

If you look at Maslow’s model of the hierarchy of needs, the end result is that you wind up occupying the bottom rungs. Socializing, Love romance, Work, Projects fun career going out actualization independence productivity and aimsgoals travel and luxuries and helping others volunteering and anything you can think of are no longer accesibleavailableviable endeavors.

 

Patients become isolated from the world outside their home. Even being driven to the store can seem exhausting from the car movements and the stimulus. Thinking of outings can then be conditioned to cause panic or anxiety before going (or planning on going) and in some cases agoraphobia.

 

Patients unable make phone calls or text without great expense overwhelmed etc even communication islated

 

Finally from those in house and then from oneself and thoughts actions of what basic person is, dreams of past

and future wandering zombielike. Having to explain a lot, combined with stimulus overwhelming and with little means become irritable

 

The CFS comorbid illnesses are most severe during ithe nitial onset (where I thought I had Lyme's as I experienced many of it's varying and widespread symptoms), as well as during CFS episodes (though to a lesser degree) The conditions include: dizziness, POTS, muscle aches, headaches, swollen glands, pressure behind eyes, tension headaches, gastrointestinal problems, confusion and brain fog, nightsweats, increased motion sickness,  listless achy feeling like you have the flu and can't get comfortable anywhere (for complete list click here).

 

imagine experiencing all these conditions all of a sudden out of the blue without explanation or knowing what to do and not able to earn income to visit specialists for answers as new conditions appear and different things tried and expected to keep up appearances and attitude when feel there's little help from med establshment or otherwise etc, and the worst is then told how it could be worse as if thats a proper cap to conversation and resoluytion to problem which is not possible as the condition reminds you all the time, rears up everywhere and can consume perspctve focus etc when on search for answers etc, much can get stired up and little settlinga nd peace so keep pressing until find. In this weakened panicked state the patient is then left to research and figure it out by themselves.

 

To read about Orthostatic/neurally Mediated Hypotension/Postural orthostatic tachycardia syndrome (POTS) click here

 

anxiety caused by sleeping too much resisting and twilight zone in between and sleepwalking stumbling later nightmares increased and night terrors. with the ibs and hours on comode and loss blodwas scary (see detailed chronology)

 

The list of symptoms CFS here

 

CFS has different presentations, prognosis outcomes scope tmlnes treatments in different patients. Imagine the networks of the principle systems (muskuloskeletal, Circulatory, Cognition, Digestion, etc.) how when dysfunction effecting one cascades to the other systems. This is the syndrome part of chronic fatigue syndrome. As yet there exists no consensus as to the cause, the cure or even how to mediate and treat patient’s illness as a whole. As there are subsets to the condition (ME or EnvTnS patients for instance) there are effective treatments for some patients that do little and/or cause undesirable side effects in others.

 

When it first presents comes on is the worst, and that lasts months for some patients and one to three years for others. Some do not recover from the severity of the initial presentation. There are unfortunate pictures or videos and of course stories of such patients. In one case the patient is rail thin and only is able to occasionally communicate with drawing hearts with his fingertip on the fabric. Though unfocused the mind remains active and external stimuli is tiring so books and tv are sometimes difficult. It does not feel well to sleep to much and though it overcomes patients there can be a nightmare experience of being in a scary abstract half asleep and fighting to stay awake not wanting to sleep experience. Then upon waking one can only sleep again, walking to the bathroom makes one dizzy sometimes missing the toilet. An unfortunate aspect of cfs is often accompanying ibs and other gi issues so that while on commode and straining one’s dizziness intensifies. In some cases the IBS is severe and ensuing wiping (and dryness from cleaning afterwards with soap in shower after relieving oneself) causes surrounding tissue to great blood loss. This then fatigue’s the patient further. Then upon waking having food and ‘stomach’ disorders makes patients not feel well and sometimes gassing and cramps lead the patient to the couch. Exercise exacerbates the condition with pem. Sleep patterns are off and poatients sometimes wake in the middle of the night, another odd experience as it contributes to the feeling of isolation.

 

Those that pass the initial phase and regain a modicum of improvement will experience episodes (relapses in cycles). t

 

Also as doctors unhelpful additional energy spent researching and trying various diets and therapies. Of course juggling money.

 

When it continues a long time it feels sad and scary and confusing.

 

Brain fog (systems not used as intended, ensuing processing difficulties exhaustion inefficient energy use being in the flow normal and stress

 

lower information capacity of the BOLD responses in CFS suggests information carrying capability, i.e. neural activity and/or neurovascular coupling, is lower in CFS patients

From: Brain function characteristics of chronic fatigue syndrome: A task fMRI study

 

These findings indicate that the brain recruits wider regions to compensate for the lower information capacity of the BOLD responses in CFS.

 

This study investigated BOLD responses to the Stroop task in CFS patients. We found that CFS patients recruit more regions to accomplish the Stroop task than controls. Among 50 regions with BOLD activation in both CFS patients and NCs, SampEns of BOLD signals in 10 areas were significantly lower in CFS patients and significantly correlated with health scores across all subjects. The SampEn of BOLD signals in the medioventral occipital cortex accounted for 40% and 31% of the variance in the SF-36 PCS and MCS scores respectively, and those in the precentral gyrus accounted for an additional 16% and 7% across all subjects. These findings indicate that the brain recruits wider regions to compensate for the lower information capacity of the BOLD responses in CFS.

 

CFS patients recruited the additional subcortical structures of amygdala, hippocampus, basal ganglia, and thalamus in response to the Stroop tasks. The well-documented brain areas that respond to the Stroop task are mainly cortical regions including the anterior cingulate cortex, insula, frontal, parietal, and occipital regions, and/or thalamus but not including the hippocampus and basal ganglia (Coste et al., 2011; Leung et al., 2000). A previous study of an auditory monitoring task observed that CFS patients also recruited the hippocampus and thalamus subcortical structures (Cook et al., 2007). The exaggerated BOLD responses in CFS patients in response to cognitive tasks would contribute to fatigue, if not constitute its cause. However, the reason why CFS patients recruit wider BOLD activations in response to cognitive tasks has remained elusive.

 

 

 

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Key Conditions and Terms:

Post Traumaitic Brain Injury Chronic Fatigue (pTBI-cf) - a persistent (chronic) result of head injury (resultant of cascading 'Secondary Damage') that may present years (even decades) post injury.

 

Chronic Fatigue Syndrome (CFS) - a persistent (chronic) condition resultant in cascading dysfunction of systems/networks (syndrome) presenting primarily as fatigue with associated comorbid conditions/pathologies/'disregulation'

 

Orthostatic/neurally Mediated Hypotension and Postural orthostatic tachycardia syndrome (POTS)

What pTBI (and comorbid conditions) feels like

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

For more information on Behavioral, Neurobehavioral and Psychiatric changes from head injury, please visit https://bra.in/7p6EPv

 

One of the most common characteristics of frontal lobe damage is difficulty in interpreting feedback from the environment.

 

Also, those with CFS can sometimes suffer from cognitive difficulties. They often feel overwhelmed by sensory information, such as sounds and smells, especially in busy public places. Their skin is often sensitive to the touch as well. Experts believe this could be explained by neurological (brain) dysfunction, which processes information as vitally important when it is not, making these people feel overwhelmed. This suggests a deficiency in certain vital chemicals in the brain.

 

The cognitive problems induced by TBI (such as pseudopsycopathy) culminate in an overall difficulty 'going with the flow' - instead I'm both (hyper) analytical as well as confused (by not inherently recognizing persons, places, and things around me...often interpreting the environment intellectually/philosophicaly/analiticaly). Perhaps the 'intellectualy analytic' regions weren't as affected by the injury and/or it is the experience of 'compensatory cognition' (where different regions of the brain communicate/process than what occurs among the common populace (those unafected by head injury) that leaves me confused.

 

A further effect of TBI has been a feeling of 'disconnectedness' which both fuels and is fueled by this ananlytic/pseudopsychopathic/compensatorial cognitive state as well as amplifying (perhaps causing) my OCD.

 

Adding to this confusion Executive Function Disorder. This is particularly stressful and often embarassing, makes work difficult as wel;

 

All of this is tiring and I look forward to evening rest. The moment I wake until I sleep I'm challenged with these psychological/psychiatric conditions. However, it alone does not explain the chroni fatigue

 

The large laundry list causes particular sensations. This list includes disrupted sleep patterns, mood and anxiety disorders, addictions, changes to stress response, sensory and stimulus sensitivity, pseudopsycopathy (including impulse control and difficulty interpreting or adhering to social cues), 'compensatory cognition', executive function difficulties (including difficulty switching between tasks) and planning, etc. further complicated by things not recognized, planning and knowing what to tdo causes stress as does garnering strength or focus for that. dysthymia. ocd also adds philo difficulties. anxiety from all contributes to cfs fedback loop.

 

Added together these culminate causing at times a feeling similar to being under too many blankets, at other times as if having had too much coffee (with not enough food), sometimes a similar daze as to when a were a child, lost in the department store (with accompanying hyper/'busy environment'/panicked type confusion).

 

, also like premature aging 80 year olds more stamina where all stimulus driving makes queazy intense and stimulus city non familiar surroundings excursions and crowds etc. also any interaction like difficult anxious noty sure how express and all directions produce anxiety plus not know how sort filter etc.

 

I’ve heard people say “I wish we could reset Julien”. It’s true, after my Head Injury, everything changed! First sensations, then difficulties and on couch then drawing to retrain just like robocop. In fact the robots have helped as I build them, I have found ways to enjoy and relax and when I’m not well the robots fall get dusty or broken (or in worst cases I’ve sold them, often my best!). They all have little pilots in them, that’s me, or you or anyone wanting to drive out to any reaches and accomplish just about anything. That is my hope, to recovery after this long journey, turn around and laugh, and of course help others. Until then, I’ve researched steadfast, and found many excellent solutions, I’m proud and happy to say hahaha.

 

Conditions associated with pTBI include: disrupted sleep patterns, mood and anxiety disorders, addictions, changes to stress response, sensory and stimulus sensitivity, pseudopsycopathy (including impulse control and difficulty interpreting or adhering to social cues), 'compensatory cognition', executive function difficulties (including difficulty switching between tasks) and planning, etc. tt

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Sensory and stimulus sensitivity

overwhelmed, sensory input and stimulation feels hard to process with a veil of brain fog over mind and eyes (like reaction to food noise well its reaction to everything especially planning etc.Feelold

, (cant deal stimulus thought people things,

 

lacking energy executive function recall memory and prone aches and negative thinking all like the aged), it's like how one feels when when getting the flu, (for others with autoimmune is more severe flufeeling), there is little help medically unless self directed, everything seems and feels difficult, making it difficult to plan or socialize which affects self esteem and employment and makes one isolated and intimacy is lacking as well as feelings of guilt for the things not accomplishing or helping or other efrts or actualisations, making one feel trapped and with post excertional malaise feel general unease achy and otherwise. If not experience a flu, or

Easily stressed agitated perturbed and anxietetc

 

Head injury then easily stressed, retrained by drawing. Then high pressure jobs ocd untreated then started coffee then aspartame and had first schizoid affective experience, discontinued aspartame. Then went on many different psych meds and got very tired from them then ocd got worse and eventually IBS got worse finally started new OCD medicine and though had begun to experience increased ones, on new meds started having more intense brain zaps, and later recurring dizzybout also,

 

This question has many components.

 

First is something experienced by many of being ‘wired but tired’ (though not in a ‘wired’ coffee focus way),

Feels like not just on, but super on. I know that has to do with Chakras. However, I’ve heard people say “I wish we could reset Julien”. It’s true, after my Head Injury, everything changed! First sensations, then difficulties and on couch then drawing to retrain just like robocop. In fact the robots have helped as I build them, I have found ways to enjoy and relax and when I’m not well the robots fall get dusty or broken (or in worst cases I’ve sold them, often my best!). They all have little pilots in them, that’s me, or you or anyone wanting to drive out to any reaches and accomplish just about anything. That is my hope, to recovery after this long journey, turn around and laugh, and of course help others. Until then, I’ve researched steadfast, and found many excellent solutions, I’m proud and happy to say hahaha.

 

Being super on may involve all sorts of fascinating linkages between networks as wide ranging as seemingly unrelated topics from musculoskeletal flexibility to Nicotine; Asthma inhalers to blood flow and volume; Leptins to Cytokines and all manner of hormonal signal paths, and on.

 

The good news is I’ve focused on four leads that ‘fit the bill’. 1) Hormones, and anything acting like a hormone. 2) Neuropeptides and Peptides 3) Stem cells 4) exomatic

 

Walk into and take in all aspects, email and other descriptions. Training has been both a challenge and helpful.

 

Overthinking ahead of every move etc. Not to mention ongoing questions. Some answers come when I ask to sync lower and inwards, and happy to explain. The whole wishing wanting or fomo and identity as this or that thing etc.

 

second are dysthemia and cyclothemia, and I have different anxiety disorders it’s not uncommon to flow from one partly into another,

 

three and as mentioned diff autonomic when going experience kinda edginess etc. also pseudopsychopathy tbi

 

four there are also components that seem manic or depressive but aren’t, for instance sometimes when I get a break and respite from cfs I’ll go all out as creative as possible (not true mania) as I want to get as much out as possible in that window of opportunity, and sometimes when I’m down with cfs I’m depressed from that (a situational depression not actual depression).

 

Answers to five that I previously had OCD from teens onward and it wasn’t as prominent. Then had TBI and it became prominent as well as pseudopsychopathy as well as a host of comorbid conditions such as anosmia, and symptoms tbi including difficulty switching tasks (oi and dizzy etc), difficulties in executive function, sensitivity to stimulus (loud crowded places, etc)

 

Of course it’s impacted everything. Some say starts with stress and litany of such. Learning to understand and deal with it and found out about Dysthemia and Cyclothemia. Sometimes wondering if Cymbalta causes it, or if change and or add. The initial onset of CFS is the worst. In some cases, such as my own it ameliorates in terms of episode frequency and duration. That’s how I was able to force myself to do Karate. I put it that way because even when not in an episode, we’re exhausted. As nurses know the sickest of patients will exhibit uncanny ability at times for sexuality, it’s been explained that the systemdrive runs on a sturdier more ancient part of our physiogonomy. I have tried various strategies to get better such as holding taichi or karate programs and various.

 

There are many competing mindsets one may encounter many of which I agree with, sometimes in opposition synchronously. Speaking of that, often when on the right trail it seems I’ll enjoy that as well, and often I’ll remember phrases from research much earlier and put together. Luckily I studied well and had great professors at UCSC. On the flip side, perhaps if I hadn’t gone to the surf skate capitol I may not have had the skateboard crash that left fracture coma anosmia etc, and yet I’m thankful at every stage of recovery. After the initial phase, I had pseudopsychopathy. It’s kind of like being a robot. Not sure how to interpret things though it’s all rushing in so fast and you take it all in, and you sense energies around things, people, places spirits, animals, and furthermore you’re confused, and planning is difficult, crowds is difficult, subjects that not enjoying on radio tv etc hard to deal with as well as confrontation in general, basically anything negative and perceived that way. If felt slighted hold grudge and such. It’s said personalities change, I became impatient was also told , well in addition to executive function there’s the cognition difference by using different pathways, so thinking differently. Sometimes I’ll meditate on recalling how I was before the injury. How did I think feel perceive am and smell attitude and encounters and thrills and the like. They say you get stuck at the time of injury, or addiction. I’ve turned to different substances at various times with different aims yet it became clear that wasn’t going places. There are hypersexuality and other things that it’s hard to separate from whether I already enjoyed such, lay half awakeI thought I’d have at business and got stressed with corporate and continued for awhile, combining other stressors from work sitch had a psych break and first meds, then later ocd and worse,

 

Pseudopsychopathy

So, pseudopsychopathy, not sure how describe, it’s like you have a sheet in front of you and the further ahead or behind in thought the bigger it is, also, it’s difficult to know how to think. Also with cfs there are extra weights oand blankets on mind body soul etc but not spirit and hopefully courage, that’s again encouraging solidarity and recognition for those too weak to let anyone know they’re shouting by various means etc.

 

Sometimes, especially in times of panic what’s familiar can be unfamiliar, there can be disasociative effects and states and sometimes vertigo or spins and such.

 

to us, reality seems like a smooshy twisty bendy thing and it comes in sorta strange, except in peace and that can feel hard to come by when someone has mood and or anxiety disorders as well.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

some advantages can connect unrelated, can sensible ascertain, learned modes for such patntce better excluding probs and heal also opening to mircltype and heal by address esoteric introduce and send love and such and imagine forgiveness here and ther also can connect unrelated and images cartoons draw and abstract to far if wish and quick with silly humor or grabbing items or when train somewhat agle its also the chore of explaining where not believing also sometimes was supposed to crsh course Zen and questions about how much was like that perhaps amplified and also, the whole alt path and starfire before and somewhat and also ormus checkout but when had various projects some sucs and gotta ask about event,

 

feeling not connected, hard to describe, moving from intellect like robo vs fuller picture,

 

cognitive probs of TBi induced pseudo psycopathy difficulty going with the flow, analytuical and things not recognized, planning and knowing what to do causes stress as does garnering strength or focus for that. dysthymia. ocd also adds philo difficulties. anxiety from all contributes to cfs fedback loop.

 

There can be body dysmorphia, there can be obsessions or compulsions. Sometimes even rituals. There can be rebelliousness I suppose stubbornness, as I was at first convinced after an incorrect diagnosis. Gotta understand how many consulatants and therapists visited empty handed, and this also met the symptoms checklist, I thought I’d found it, especially considering it’s tricky nature of not showing up in tests unless treated. The next phase I thought was environmental allergies or toxic exposure, which I haven’t entirely ruled out and am interested in tests. The doctors would hear about head injury and when I asked whether I would have felt the effects then, not now they mistakenly confirmed that notion yet I found out recently how years later these things take effect in many cases, partly as there have pattern switches (immune/endocrine system/metabolics/autonomic/psychobiological/etc.), there has been damage (lesions, axonal injury, blood brain barrier, etc) and there have been neurodegenerative cascades that I fortunately have found solutions to help prevent any further incursion and perhaps somewhat repair such effects.

 

Ongoing stress from these psychologies could be taxing and I’ve of course rested best I can, though it’s not always an ideal solution

So, research and now some

 

asks plans require more effort and anxiety and without wanting plan every step and always anxious about mtgs evnts etc, executive

3 portions of basal ganglia. imbalance between the “direct” and “indirect” pathways through the basal ganglia ocd tbi cfs, and inflamation, smaller caudate etc.

 

Everything feels dramatic and instense. Crazies but also fun pkids and animals drawn to, would like to teach perhaps, would like more artproject funding ha

 

So tests are expensive, and that’s a factor. It’s hard to earn income. Well, thought of fundraiserng and events ans such, also gonna check in and add other rtf, I had written extensively at one point though that hd became inacesblemostly so it’s improved a bit also enjoy fun and what learned and what like to do ha, well there’s notes7 for the ideals and such

 

So, encountering hard to know what facial reactions to make, how stand, etc, which standing with oi isn’t advisable. Now working at a desk seems best fit, though interactions can be tiring the next day, even if enjoying them, which can lead to cfs patients seeking isolation perhaps. I guess they just wish people would come over with no fuss and plans bringing soup and hugs and research into medicines and doctors who know what theyre treating and how ha. See item 1 on my writenpost where I bemoan such. Gotta mention the doctors incredible ineptitude, and the competent ones being greedy. That was the deal, if I figured out what was going on, I’ll sidestep the system and go straight to healing. This way I can share the info, hence CFSHelp.info, which I’m asking for help in promoting on appropriate boards, and improving the site for better functionality such as 2.0 topics and message boards.

 

asks plans require more effort and anxiety and without wanting plan every step and always anxious about mtgs evnts etc, executive

3 portions of basal ganglia. imbalance between the “direct” and “indirect” pathways through the basal ganglia ocd tbi cfs, and inflamation, smaller caudate etc.

 

Everything feels dramatic and instense. Crazies but also fun pkids and animals drawn to, would like to teach perhaps, would like more artproject funding ha

 

For more information on Behavioral, Neurobehavioral and Psychiatric changes from head injury, please visit https://bra.in/7p6EPv

 

Cognition uses different regions is more difficult expends more energy and effort different types thoughts overdrive anticpatory not chl and requires more effort focus willpower and feels diff esp with asthemia less efficient with less blood flow and inflamation plus difficulties w

 

Compensatory, Less Efficient Brain Functioning Causes Fatigue – several studies suggest the mental fatigue found in ME/CFS may result from a similar compensatory response as seen in MS. In ME/CFS more brain regions than normal are required to complete a task. This is believed to result in less efficient brain activity, greater use of brain resources for simple tasks and ultimately fatigue.

 

From: http://wames.org.uk/cms-english/2018/06/cortical-hypoactivation-during-resting-eeg-suggests-central-nervous-system-pathology-in-patients-with-cfs/

 

Overall, the present study revealed a pattern of global central nervous system hypoactivation in patients with CFS. Most research points to a common finding of cognitive slowing in CFS and we identified this with quantifiable increases in delta and decreases in beta-2 frequency bands. Focal increases in delta sources in regions with language and limbic underpinnings were related to a reduced motivation factor of fatigue.

 

From: Resting-state functional magnetic resonance imaging activity and connectivity and cognitive outcome in traumatic brain injury. - PubMed - NCBI

 

Signal amplitude and functional connectivity during the resting state, tractography related to DMN, and the association between signal amplitudes and cognitive outcome.

 

RESULTS:

 

Patients had greater ALFF in frontal regions, which was correlated with cognitive performance. Within the DMN, patients showed increased connectivity in the frontal lobes. Seed-based connectivity analyses revealed augmented connectivity within surrounding areas of the frontal and left parietal nodes of the DMN. Fractional anisotropy of the cingulate tract was correlated with increased connectivity of the frontal node of the DMN in patients with TBI.

 

CONCLUSIONS AND RELEVANCE:

 

Increased ALFF is related to better cognitive performance in chronic TBI. The loss of structural connectivity produced by damage to the cingulum tract explained the compensatory increases in functional connectivity within the frontal node of the DMN.

In tasking other brain regions ensuing Consciousness is irregular (described as 'jittery', 'not smooth', 'wired and tired', excitatory (emotionally, mentally), overstimulated and sensitive to sensory stimulation and executive function thought/planning etc

 

From: https://jnnp.bmj.com/content/early/2018/05/16/jnnp-2017-317823

 

The cognitive profiles of FM, CFS and non-cognitive FND are similar to the proposed features of FCD, suggesting common mechanistic underpinnings. Similar findings have been reported in patients with mild traumatic brain injury and whiplash. We hypothesise that pain, fatigue and excessive interoceptive monitoring produce a decrease in externally directed attention. This increases susceptibility to distraction and slows information processing, interfering with cognitive function, in particular multitasking. Routine cognitive processes are experienced as unduly effortful. This may reflect a switch from an automatic to a less efficient controlled or explicit cognitive mode, a mechanism that has also been proposed for impaired motor control in FND. These experiences might then be overinterpreted due to memory perfectionism and heightened self-monitoring of cognitive performance.

 

 

 

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Key Conditions and Terms:

Post Traumaitic Brain Injury (pTBI) - the result of head injury (effects of initial injury and cascading 'Secondary Damage') that may present years (even decades) post injury.

 

Anosmia - Loss of smell

 

Sensory/Stimulus Sensitivity - resultant pTBI

 

Disrupted Sleep Patterns - resultant pTBI

 

Mood and Anxiety Disorders - both pseudo (pre-existing) and pTBI

 

Addictions - both pseudo (pre-existing) and pTBI

 

Changes to stress response and Dysautonomia - pTBI

 

Pseudopsycopathy (including impulse control and difficulty interpreting or adhering to social cues) - resultant from head injury

 

Compensatory Cognition and Executive Functioning Dysfunction (including difficulty switching between tasks, planning, etc.) - resulting from

From: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3182015/

Related to the profile of brain damage associated with these forces and related events, there is an equally predictable profile of neurobehavioral sequelae that survivors of brain injury often suffer from including cognitive deficits (memory, attention, executive function, speed of information processing), personality changes (best characterized as dysexecutive syndromes involving social comportment, cognition, and motivated behavior), and increased relative rates of psychiatric disorders, particularly depression, anxiety, and PTSD both in civilian and military populations. Our understanding of the ncuropathophysiology of TBI has outpaced advances in our ability to mitigate and treat the effects of neurotrauma both acutely (eg, neuroprotection trials) and chronically.

 

From: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3182015/t

Related to the profile of brain damage associated with these forces and related events, there is an equally predictable profile of neurobehavioral sequelae that survivors of brain injury often suffer from including cognitive deficits (memory, attention, executive function, speed of information processing), personality changes (best characterized as dysexecutive syndromes involving social comportment, cognition, and motivated behavior), and increased relative rates of psychiatric disorders, particularly depression, anxiety, and PTSD both in civilian and military populations. Our understanding of the ncuropathophysiology of TBI has outpaced advances in our ability to mitigate and treat the effects of neurotrauma both acutely (eg, neuroprotection trials) and chronically. Furthermore, although the patterns described arc the norm, there are surprising variations in outcome that suggest that individual factors such as genetic differences and factors modulating resiliency are worthy of much more study.

from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4922739/  pseudopsychopathic) syndrome manifests with disinhibition, antisocial behaviour, affective lability, hyperactivity, sexual preoccupation without overt sexual aggression, impulsivity, distractibility and poor insight. Frontal convexity (pseudodepressed) syndrome presents with apathy, indifference, decreased initiative, psychomotor retardation, inflexibility, impersistence and perseveration. Medial frontal syndrome is characterised by akinesia, sparse verbal output and incontinence. Clinically a mixture of these syndromes is common. Severity of behavioral sequelae is more with abnormal EEG or early CT scans indicating significant brain edema. Behavioral sequelae correlate with severity of injury, though such relationship is not linear

 

Injury to the orbitofrontal cortex (OFC) is more strongly associated with altered self-regulatory behaviour such as poor emotional modulation and real-life decisionmaking . OFC damage tends to affect the ability to utilize cues in the environment to predict future rewarding or aversive events and choose appropriate responses in the context of changing reinforcement contingencies while medial and orbital frontal lesions produce a pseudopsychopathic syndrome with antisocial, tactless, impulsive and irritable behaviour.

 

Changes in personality, emotion, mood, and social behavior control have frequently been associated with frontal lobe damage. Benson and Blumer suggested 2 types of personality change. The first, characterized by apathy, poor planning, and lack of drive and concern, is associated with dorsolateral frontal lesions or massive frontal lesions. The second, known as pseudopsychopathic change, is related to orbital damage and consists of disinhibition, puerilism, and euphoria. Executive functions, including planning, mental flexibility, and temporal organization, are ascribed to the dorsolateral aspect of the frontal lobes.

PEM

Post Exertional Malaise (PEM)

 

Gets it's own catagory (even though a comorbid component/condition of the larger and more pressing cfs ptbicf) as it's what's impacting the most these in trms work or other progress towards stble or hp.

 

When you manage to do something you then experience PEM which is even worse. cant begin to tell how pem empty void feel like nothng can smth it’s beiyond tired or fatigue it’s like all your chi is gone, there’s no pleasure or rest release in anything it’s a very difficult experience to describe while not in it, and while in it I cant describe (and write about) it. Like Pure dread is a mild way of discussing it. You know in Dune when the Benegeserit have that place they can’t look at? Yeah that’s nothing an ihop breakfast comapred with this empty unconnected souless bleak mordred’s wasteland etc. Even writing this is spooking me out, but that’s how it goes with pem. You can see why I made a fundraiser to help anyone having to go through those long dark passages, I must help and when I finalizetreatment decisions and find improvements I’ll have a base to stand on when I recommend help.

 

Now when you’re stuck and everything is on hold like driving coast to coast in 2nd gear. With CFS come comorbid conditions including, frequently, depression (a mood disorder), OCD (an anxiety disorder) and other neuropsychological conditions.

 

From: 'Post-Exertional Malaise A Defining Symptom of Chronic Fatigue Syndrome' https://www.verywell.com/post-exertional-malaise-715670

 

Post-exertional malaise is the hallmark symptom of chronic fatigue syndrome. The brief definition is an inability to repeat previous exertion. However, that's a long way from providing a true understanding of this complex symptom of a complex disease.

 

To fully understand this term, first it's important to understand its component parts:

 

Malaise is a vague feeling of bodily discomfort or a general feeling of being unwell, much like you feel when you're coming down with a cold or the flu.

 

Post-exertional means occurring after exercise or another type of exertion. This can include cleaning house, shopping, or any other activity in which you expend energy.

 

In chronic fatigue syndrome, post-exertional malaise is a period of intense exhaustion and a spike in other symptoms that lasts for more than 24 hours following physical exertion, along with an inability to exercise as vigorously during that time. Some people say they experience it after mental exertion as well.

 

This symptom is a hallmark of the disease. Some research suggests that it may cause detectable differences in the blood, many of which are being studied as a possible diagnostic marker. It's also the basis of a suggested alternative name for chronic fatigue syndrome: systemic exercise intolerance disease, or SEID.

 

The term "malaise" is a fairly weak one to describe what people with this disease go through. Along with intense exhaustion, they may also have considerable muscle pain, cognitive dysfunction, and flu-like symptoms (sore throat, fever, etc.) In some, it may last for a day or two.

 

In others, it may last for a week or more.

 

The amount of exertion it takes to trigger this symptom varies greatly. In someone with a mild case, it might take an extra-long workout at the gym or a vacation that includes a lot of walking. In someone with a severe case, it could just take getting out of bed and showering.

 

Post-exertional malaise is often a source of considerable disability.

 

Some cases of fibromyalgia may involve a negative reaction to exercise as well. It's not yet clear whether this response is classifiable as post-exertional malaise.

 

Like chronic fatigue syndrome itself, the existence of post-exertional malaise is questioned by some medical professionals. However, we're learning more about its causes, which could help the symptom be taken more seriously as well as making better treatment available.

 

 

From: 'What is Post-Exertional Malaise? Part 1: The Basics & Reasons for Disbelief' https://www.verywell.com/what-is-post-exertional-malaise-716023

 

Post-exertional malaise (PEM) is such an important part of chronic fatigue syndrome (ME/CFS) that you really can't understand the disease without Understanding the symptom. It's guided a tremendous amount of ME/CFS research, is theorized to be the key to an objective diagnostic test, and is even behind the new suggested name for the condition — systemic exercise intolerance disease.

 

Still, however, some members of the medical community don't believe that PEM exists.

 

Instead, they blame the negative response to exercise on deconditioning; they blame exercise avoidance on a psychological condition called kinesiophobia. In a nutshell, they think a whole bunch of people are just out of shape and irrational. (Spoiler alert: research suggests otherwise!)

 

Meanwhile, a large and continuously growing body of evidence suggests a wide array of physiological abnormalities behind PEM. This symptom substantially limits the activity levels of people with ME/CFS and lowers the quality of life considerably. In severe cases, it defines their lives entirely.

 

Understanding Post-Exertional Malaise

 

PEM causes intense exhaustion as well as an upswing in other symptoms that last for at least 24 hours after physical exertion. That may not sound so unusual to those unfamiliar with it — after all, we all need time to recover after a tough workout.

 

When it comes to PEM, though, little about it is normal or familiar to people without ME/CFS.

 

It's not just about overused muscles or needing a little extra rest.

 

PEM can range from moderately stronger-than-normal symptoms to completely disabling. In a mild case, the person may have extra fatigue, achiness, and cognitive dysfunction. In a severe case, PEM can bring on intense flu -like symptoms on top of extreme fatigue, pain, and brain fog strong enough that it's hard to even form a sentence or follow the plot of a sitcom.

 

That's hardly what the rest of us go through after a hike or a trip to the gym. Also abnormal is the amount of exertion it can take to put people in this state.

 

As with the severity, the exertion needed to trigger PEM theories case-by-case. For some, it might kick in after a little bit of exercise on top of a day's regular activities. For others, is incredible as it may seem, it can just take a trip to the mailbox, a shower, or sitting upright for an hour.

 

The Belief That it's Not Real

 

If PEM is so disabling, how can some doctors believe that it doesn't even exist?

 

Part of the problem is the lingering skepticism that ME/CFS itself is real. Adding to that is how significantly activity levels change after the onset of the disease coupled with how long it takes for a diagnosis.

 

Current diagnostic criteria require the symptoms have been constant for at least six months. That's plenty of time for somebody to become deconditioned. The reality of this condition, though, is the diagnosis often takes much longer. If someone's been unable to tolerate much exertion for two or three years, it's hardly a surprise that they'd be out of shape.

 

Research supports PEM being more than mere deconditioning. (Bazelmans) A study published in Psychological Medicine demonstrated that there was no significant difference in physical fitness between those with ME/CFS and healthy, deconditioned people in the control group.

 

Another study (VanNess) involved exercise on two consecutive days. Researchers found that people with ME/CFS were unable to repeat their performance on the second day, in contrast to the control group.

 

They also found that oxygen consumption dropped in the ME/CFS patients, but not controls, on the second day. Researchers concluded that it was not deconditioning but more likely metabolic dysfunction causing the diminished exercise capacity. Later research also suggests differences in oxygen consumption and metabolism are linked to PEM. (Miller)

 

Some doctors also say that the fear of exertion displayed by many people with ME/CFS is actually an irrational fear of exercise called kinesiophobia.

 

The research in this area is somewhat mixed. Some studies have concluded that kinesiophobia rates are high in people with this condition and that it does play a role. At least one agrees that kinesiophobia is common but state that it does not appear to determine daily physical activity. Others found no correlation between fear of exercise and exercise performance. (Nijsx3, Silver)

 

Many patients and advocates point out that fearing the repercussions of PEM is perfectly rational and has a protective mechanism rather than a phobia.

 

From: Neural consequences of post-exertion malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - ScienceDirect

 

Post exertion malaise is one of the most debilitating aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, yet the neurobiological consequences are largely unexplored. The objective of the study was to determine the neural consequences of acute exercise using functional brain imaging. Fifteen female Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients and 15 healthy female controls completed 30 min of submaximal exercise (70% of peak heart rate) on a cycle ergometer. Symptom assessments (e.g. fatigue, pain, mood) and brain imaging data were collected one week prior to and 24 h following exercise. Functional brain images were obtained during performance of: 1) a fatiguing cognitive task – the Paced Auditory Serial Addition Task, 2) a non-fatiguing cognitive task – simple number recognition, and 3) a non-fatiguing motor task – finger tapping. Symptom and exercise data were analyzed using independent samples t-tests. Cognitive performance data were analyzed using mixed-model analysis of variance with repeated measures. Brain responses to fatiguing and non-fatiguing tasks were analyzed using linear mixed effects with cluster-wise (101-voxels) alpha of 0.05. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients reported large symptom changes compared to controls (effect size ≥0.8, p < 0.05). Patients and controls had similar physiological responses to exercise (p > 0.05). However, patients exercised at significantly lower Watts and reported greater exertion and leg muscle pain (p < 0.05). For cognitive performance, a significant Group by Time interaction (p < 0.05), demonstrated pre- to post-exercise improvements for controls and worsening for patients. Brain responses to finger tapping did not differ between groups at either time point. During number recognition, controls exhibited greater brain activity (p < 0.05) in the posterior cingulate cortex, but only for the pre-exercise scan. For the Paced Serial Auditory Addition Task, there was a significant Group by Time interaction (p < 0.05) with patients exhibiting increased brain activity from pre- to post-exercise compared to controls bilaterally for inferior and superior parietal and cingulate cortices. Changes in brain activity were significantly related to symptoms for patients (p < 0.05). Acute exercise exacerbated symptoms, impaired cognitive performance and affected brain function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients. These converging results, linking symptom exacerbation with brain function, provide objective evidence of the detrimental neurophysiological effects of post-exertion malaise.

 

The primary brain regions sensitive to acute exercise and symptoms of Post Exertional Malaise are the inferior frontal, parietal and cingulate cortices (regions critical for efficient cognitive processing involving processes associated with attention, error detection, and cognitive control/central executive functions)

 

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Initial Onset

 

At the initial onset was when the CFS was it's worse. Unfortunately some don't progress out of this stage. The following are excerpts from descriptions I had writen about my experience at the time of initial onset (which lasted two years)

 

1a) What it's like having CFS. Achy everywhere like a flu. No energy, no focus. Tension headaches. Have about 20 minutes a day of focus, which I use to do dishes, email or write this report. Watching tv and reading is too difficult. I sleep and as body can only handle so much sleep, I then lie in bed listless. I cry all day. Can't walk outside. Joints hurt. Nauseus. Vomit my food. Dizzy, have spins. Feel like every cell in my body is telling me I'm dying. Fight depression. vertigo, occitipal lobes pressure neck ache. Doing anything's out of reach. My ocd is through the roof. Every day is a chore. Can't even post robots for sale on ebay and have zero dollars. Edgy, irritable. No focus to do art, talk on phone or go out, and stuck all alone all day. Feel the medical establishment is not on my side and have to fight them just to prove it's not made up, nor do they know how to help. Do my best to remain positive. Feel am in jail with no known release date. Know that the longer I have Lymes, the more it burrows and gets worse. Have anxiety. Feel misunderstood. Doing my best to not give up.

 

unable to work. regular drs useless. no energy to schedule, and when do not helpful. Have to come up with money and energy to find own means for treatrment and healing monumental task, and fight establishment and expell energy convincing others as well as possibility of possibilities not considered with research. Feels like every cell in my body telling me I'm dying. Every day squirming listless in bed, unable to go out, sun too bright, and exhausted at every step. socially isolating. Days alone at times with no solution or end insight lead to depression and despair on top. no one comes to visit, nor check in calls and no means to travel out both economic and energetically left lonely and misunderstood. Devoid of peace or pleasure as books not possible and tv a chore. trapped in prison for crime didn't coomit with no known release date. Forcing crash course in biology, nutrition and medicine with aim someday will help others in similar situation.

 

I  remain afflicted by tremendous energy related difficulties. My three biggest challenges are - lack of energy, lack of focus, and aches throughout. I also experience shaking, nausea and vomiting as well as digestive problems (ascribed to IBS). Every day I get about 20 minutes of focus I use to try to write  my treatment history and current plan. my heretofore undiagnosed affliction that is marked by a chronic lack of energy and focus. My chronic fatigue presents as a constant feeling of exhaustion, even when I have plenty of sleep at night and naps during day, as well as an ongoing inability to focus wherin even simple things (as watching tv or reading a book) prove too difficult for me. I am left listless without anything to do than squirm uncomfortably in bed. Even as I force myself to exercise (in the form of walks), I feel exhausted. Having 'no energy' leaves me feeling terrible. Without focus, I'm unable to be productive, leaving me feeling overwhelmed and anxious. As such I feel the 'spark' of Life is absent. This leads to continued feelings of powerlesness, depressing me and 'driving me nuts'. It goes without saying that it is of utmost important that I find a solution. As far as tests are able to measure, my lab work results indicate I am within the 'healthy' parameters.

 

I was experiencing shaking, nausea, vomiting and low energy.  I am glad to see that, as far as these tests are able to measure, my lab work results indicate I am within the 'healthy' parameters. Though I met with my psychiatrist and both changed the schedule of my medicine as well as added a blood pressure cum PTSD medicine (prassosine) for more restful sleep), after two weeks of this new schedule and protocal I remain afflicted by tremendous energy related difficulties. I would like to give you the history of my energy/focus related affliction, as I have observed it, as well as present research into the healing modalities I plan on pursuing (with your help) in addition to the lifestyle changes I have made for said pursuit (which included changes to diet, daily practice of meditation, prayer, excercise, etc.).

 

Though I experience other ailments you are presently aware of (my lack of smell sense, ocd, frontal lobe damage, IBS, hemoroids, flat feet, etc.), my plan is to address these after addressing and/or resolving my primary concern which remains my heretofore undiagnosed affliction that is marked by a chronic lack of energy and focus. My chronic fatigue presents as a constant feeling of exhaustion, even when I have plenty of sleep at night and naps during day, as well as an ongoing inability to focus wherin even simple things (as watching tv or reading a book) prove too difficult for me. I am left listless without anything to do than squirm uncomfortably in bed. Even as I force myself to exercise (in the form of walks), I feel exhausted. Having 'no energy' leaves me feeling terrible. Without focus, I'm unable to be productive, leaving me feeling overwhelmed and anxious. As such I feel the 'spark' of Life is absent. This leads to continued feelings of powerlesness, depressing me and 'driving me nuts'. It goes without saying that it is of utmost important that I find a solution.

 

1) Various conditions and Symptoms

vertigo and brain zaps

Terrible ibs (though may be connected Celiacs, similar to ms, als, geo4) because I often spend hours at a time on the toilet I have internal and external hemoroids...that can't be helping. I have athletes foot, occasional jock itch and what appears to be ringworms all over, as well as mild excsema...I used to be a perfect specimen, now I'm glad yo0u're not squeemish eww. I have IBS often and sometimes vomit the meals that I eat, usually diners are hard to keep Regurgitate since young, bowel and adrenal other tests, canabis, other elixirs striker igenix mms etc. Listless no focus agitated all am from stomach then poo all day, demand fecal transplant! And hyperbaric!

suffer from sleep apnoea. The last time I felt well-rested was a decade ago. I know how a lack of sleep can feed into your worry feedback loop

 

Symptoms that I experienced at initial onset and (to a lesser degree) during CFS episodes that are shared with Lymes. These Lymes symptoms include:

Persistent swollen glands; Sore throat; Fevers; Sore soles, esp. in the AM

Joint pain: Fingers, toes; Ankles, wrists; Knees, elbows; Hips, shoulders

Joint swelling: Fingers, toes; Ankles, wrists; Knees, elbows; Hips, shoulders; Unexplained back pain; Stiffness of the joints or back

Muscle pain or cramps; Obvious muscle weakness

Twitching of the face or other muscles

Confusion, difficulty thinking; Difficulty with concentration, reading, problem absorbing

new information; Word search, name block; Forgetfulness, poor short term memory, poor attention

Disorientation: getting lost, going to wrong places

Speech errors- wrong word, misspeaking

Mood swings, irritability, depression

Anxiety, panic attacks

Psychosis (hallucinations, delusions, paranoia, bipolar)

Tremor

Seizures

Headache

Light sensitivity

Sound sensitivity

Vision: double, blurry, floaters

Ear pain; Hearing: buzzing, ringing, decreased hearing

Increased motion sickness,

vertigo, spinning

Off balance, “tippy” feeling

Lightheadedness, wooziness,

unavoidable need to sit or lie

Tingling, numbness, burning

or stabbing sensations,

shooting pains, skin

hypersensitivity

Facial paralysis-Bell's Palsy

Dental pain

Neck creaks and cracks,

stiffness, neck pain

Fatigue, tired, poor stamina

Insomnia, fractionated sleep,

early awakening

Excessive night time sleep

Napping during the day

Unexplained weight gain

Unexplained weight loss

Unexplained hair loss

Pain in genital area

Unexplained menstrual

irregularity

Unexplained milk production;

breast pain

Irritable bladder or bladder

dysfunction

Erectile dysfunction

Loss of libido

Queasy stomach or nausea

Heartburn, stomach pain

Constipation

Diarrhea

Low abdominal pain, cramps

Heart murmur or valve

prolapse?

Heart palpitations or skips

“Heart block” on EKG

Chest wall pain or ribs sore

Head congestion

Breathlessness, “air hunger”,

unexplained chronic cough

Night sweats; Exaggerated symptoms or

worse hangover from alcohol;Symptom flares every 4 wks.

 

 

Hernia operation perhaps affected digestion.

Lessions appear right as get symptoms.

because I often spend hours at a time on the toilet I have internal and external hemoroids...that can't be helping. I have athletes foot, occasional jock itch and what appears to be ringworms all over, as well as mild excsema...I used to be a perfect specimen, now I'm glad yo0u're not squeemish eww

I agree. I have IBS often and sometimes vomit the meals that I eat, usually diners are hard to keep. Regurgitate since young, bowel and adrenal other tests, canabis, other elixirs striker igenix mms etc

My three biggest challenges are - lack of energy, lack of focus, and aches throughout. If I may add a fourth is digestive problems. Every day I get about 20 minutes of focus I use to try to write   my treatment history and current plan

, I had remain flattened for months and unable to work. It deeply affected my relationships. For instance my daughter visited and I was unable to play with her. My experience is clearly a physical reaction as I, in fact, have done my best to remain hopeful in mind and spirit (not the hallmark of a psychological malady), so I know it is not psychological/psychiatric depression. Now seeing as my life is falling apart because of this debilitating illness brought on by a misdiagniosed illness (when looking at my rash my doctoor spent only a split second looking at it, before determining it was simply an infection requiring antibiotics), I am quite upset. I was feeling fine before I had this rash. After 3 days of the antibiotics I saw a different doctor who said it was misdiagnosed, gave me a steroid cream for fungus and the rash went away, but the physical flattening didn't. After eight months I remained bedridden.

 

A psychological evaluation administered at the time reveals my state. It asked 'Over the last 2 weeks, how often have you been bothered by any of the following problems? Rate how often and the level.'

1. Little interest or pleasure in doing things? Answer: several days. very difficult

2. Feeling down, depressed, or hopeless? Answer:  every day. very difficult

3. Trouble falling or staying asleep, or sleeping too much? Answer:  every day. very difficult

4. Feeling tired or having little energy? Answer:  every day. very difficult

5. Poor appetite or overeating? Answer:  several days. very difficult

6. Feeling bad about yourself- or that you are a failure or have let yourself or your family down? Answer:  every day. very difficult

7. Trouble concentrating on things, such as reading the newspaper or watching television? Answer:  every day. very difficult

8. Moving or speaking so slowly that other people could have noticed. Or the opposite-being so fidgety or restless that you have been moving around a lot more than usual? Answer:  several days. somewhat difficult

 

I was unable to make money during these onsets and as such sold my family hierlooms to come up with moneys for consultations from any medical and alternative healing I could find. From naturopaths to acupuncturists the message remained the same. Get tested by Igenix.

In between I changed my diet, pusue mediutation, prayer, excercise. Yet, during regular intervals it returns in cycles. I also found a promising specialist in SF that does not accept insurance and is beyond my current budget. Coinciding with the onset of my illness, a friend was similarly afflicted. Like me, her Kaiser tests did not reveal as assesed by Kaiser doctors. Instead, she paid out of pocket for an independent clinic, and using the same lab results was diagnosed as having Lymes!

 

Currently, I can hardly move. Some days I am nauseous and dizzy with no energy. My Lymes spectrum disorder, it seems is back.

 

6bb b) Symptoms of Lymes and coinfections

Persistent swollen glands; Sore throat; Fevers; Sore soles, esp. in the AM

Joint pain: Fingers, toes; Ankles, wrists; Knees, elbows; Hips, shoulders

Joint swelling: Fingers, toes; Ankles, wrists; Knees, elbows; Hips, shoulders; Unexplained back pain; Stiffness of the joints or back

Muscle pain or cramps; Obvious muscle weakness

Twitching of the face or other muscles

Confusion, difficulty thinking; Difficulty with concentration, reading, problem absorbing

new information; Word search, name block; Forgetfulness, poor short term memory, poor attention

Disorientation: getting lost, going to wrong places

Speech errors- wrong word, misspeaking

Mood swings, irritability, depression

Anxiety, panic attacks

Psychosis (hallucinations, delusions, paranoia, bipolar)

Tremor

Seizures

Headache

Light sensitivity

Sound sensitivity

Vision: double, blurry, floaters

Ear pain; Hearing: buzzing, ringing, decreased hearing

Increased motion sickness,

vertigo, spinning

Off balance, “tippy” feeling

Lightheadedness, wooziness,

unavoidable need to sit or lie

Tingling, numbness, burning

or stabbing sensations,

shooting pains, skin

hypersensitivity

Facial paralysis-Bell's Palsy

Dental pain

Neck creaks and cracks,

stiffness, neck pain

Fatigue, tired, poor stamina

Insomnia, fractionated sleep,

early awakening

Excessive night time sleep

Napping during the day

Unexplained weight gain

Unexplained weight loss

Unexplained hair loss

Pain in genital area

Unexplained menstrual

irregularity

Unexplained milk production;

breast pain

Irritable bladder or bladder

dysfunction

Erectile dysfunction

Loss of libido

Queasy stomach or nausea

Heartburn, stomach pain

Constipation

Diarrhea

Low abdominal pain, cramps

Heart murmur or valve

prolapse?

Heart palpitations or skips

“Heart block” on EKG

Chest wall pain or ribs sore

Head congestion

Breathlessness, “air hunger”,

unexplained chronic cough

Night sweats; Exaggerated symptoms or

worse hangover from alcohol;Symptom flares every 4 wks.

Additional signs Tick exposure in an endemic region; Historical facts and evolution of symptoms over time consistent with Lyme; Systemic signs & symptoms consistent with Bb infection (other potential diagnoses excluded):

Single system, e.g., monoarthritis

Two or more systems, e.g., monoarthritis and facial palsy

Erythema migrans, physician confirmed

Acrodermatitis Chronica Atrophicans, biopsy confirmed

Seropositivity

Seroconversion on paired sera

Tissue microscopy, silver stain

Tissue microscopy, monoclonal immunofluorescence

Culture positivity

B. burgdorferi antigen recovery

B. burgdorferi DNA/RNA recovery

From author Pamela Weintraub:

Unrelenting pain. Headaches, muscle aches, swollen joints, rashes. Loss of coordination and muscle spasms. Intermittent paralysis. Cycles of disabling symptoms that persist for years, causing ceaseless suffering and frustration for patients and their families.

 

Early Symptoms of Lyme Disease (3-30 days after the tick bite)

Red, expanding rash called erythema migrans (EM) or a “bulls-eye” rash — can reach 12 inches across, and usually shows up around 7 days after the bite; Fatigue; Chills; Fever; Headache; Muscle and joint aches; Swollen lymph nodes

 

Early Stage Symptoms of Lyme Disease (Days to weeks after the tick bite)

If Lyme is not treated, other symptoms may appear, and can include:

Additional EM rashes in other areas; Facial or Bell’s palsy (loss of muscle tone on one or both sides of the face); Severe headaches and neck stiffness due to meningitis (inflammation of the spinal cord); Pain and swelling in the large joints (such as knees); Shooting pains that may interfere with sleep; Heart palpitations and dizziness; Fatigue; Forgetfulness/brain fog

 

Late Stage Symptoms of Lyme Disease (Months to years after the tick bite)

Approximately 60% of patients with untreated Lyme infection may have bouts of arthritis, with severe joint pain and swelling. Large joints are most often affected, especially the knees.

 

Up to 5% of untreated patients may develop chronic neurological complaints. These include shooting pains, numbness, or tingling in the hands or feet, and problems with short-term memory.

 

Other late stage symptoms include:

Depression; Panic attacks; Mood swings; Anxiety; Nerve problems; Excessive fatigue; Hormonal deficiencies and imbalances; Other immune dysfunctions; Muscle and joint pain; Neurological problems; Heart involvement; Vision and hearing problems; Migraines

Besides the rash, some of the first symptoms of Lyme disease may include a flu-like condition with fever, chills, headache, stiff neck, achiness and fatigue. For a complete list of symptoms, refer to the Tick-Borne Disease Alliance (TBDA), but some of the more frequent symptoms include the following:

Factors that complicate Lymes recovery

A wide range of health concerns can  complicate recovery from Lyme and related disease, says Richard Horowitz, MD, author of Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease. Many patients get well only when multiple factors are addressed:

Co-infections (often coming from the same tick as the Lyme spirochete) most commonly Babesia, Anaplasma, Ehrlichia, and Bartonella Immune dysfunction; Inflammation; Environmental toxins and detoxification problems; Vitamin, mineral, and/or nutritional deficiencies; Mitochondrial dysfunction; Hormonal abnormalities; Neurodegenerative disorders, possibly precipitated by infection; Neuropsychiatric disorders in the aftermath of infection; Sleep disorders; Autoimmune disease and postural orthostatic tachycardia syndrome (POTS), a condition that affects the autonomic nervous system and causes such symptoms as low blood pressure, fatigue, palpitations, and dizziness; Allergies; Gastrointestinal disorders; Liver dysfunction; Pain disorders; Deconditioning and lack of exercise.

 

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Mood/Anxiety Disorders and pTBI Comorbid Conditions

Key Conditions and Terms:

Dysthemia - Mood disorder, marked by depressive episodes (not categorised as minor or major depressive disorders)
Cyclothemia - Mood disorder marked by manic and depressive episodes (not catagorised as bipolar)
Obsessive Compulsive Disorder (OCD) - Anxiety disorder marked by persistent obsessions and compulsions
Dysautonomia ('wired but tired') - pTBI Comorbid Condition (physiological disorder that presents psychological symptoms as well)

Pseudopsycopathy - pTBI Comorbid Condition (physiological disorder which presents psychiactric/psychological symptoms)
Generalised and/or Social Anxiety Disorders - Anxiety disorder

Unrestful sleep - pTBI-cf/CFS Comorbid Condition (physiological disorder that presents psychological effects)

 

 

 

 

 

 

 

 

This question has many components.

1) Dysautonomia, Sympathetic Dominance/Hyperactivity ('wired but tired') - pTBI Comorbid Condition (physiological disorder that presents psychological symptoms as well)

First is something experienced by many of being ‘wired but tired’ (though not in a ‘wired’ coffee focus way), Feels like not just on, but super on. This is the primary experience of patients with Dysautonomia (a cofactor in pTBI-cf and CFS).

 

Following the 'story' of dysautonomia leads one through a curious and fantastic labyrith of discovery through seemingly unrelated conditions, as the cause of Dysautonomia (and being 'super on') involves a myriad of (fascinating) linkages between seemingly unrelated conditions via networks as wide ranging (and seemingly unrelated) as musculoskeletal flexibility, Nicotine (and it's receptors throughout our limbic/endothelial and other networks); Asthma inhalers (CFS often begins immediately following steroid use); to blood flow and volume (CFS patients have substantially different measures of both); Leptins to Cytokines (both markers as well as likely culprits in the causation or exacerbation of CFS; and all manner of hormonal signal paths (all effected/affected by CFS), and on).

 

Walk into and take in all aspects, email and other descriptions. Training has been both a challenge and helpful. Overthinking ahead of every move etc. Not to mention ongoing questions. Some answers come when I ask to sync lower and inwards, and happy to explain. The whole wishing wanting or fomo and identity as this or that thing etc.

 

Also includes difference in stress response Stress response why it comes on ebv and similar responses found in bullying ptsd codep coda etc

 

Many studies have found the ANS to be dysfunctional, or ‘out of balance’ in ME/CFS patients (called ‘dysautonomia’). Robinson et al. (2015) found evidence of dysautonomia in almost 90% of CFS patients.

 

ANS imbalance can also impact the length, type and quality of sleep, with evidence suggesting that reduced HRV (showing increased sympathetic activity) in patients with ME/CFS is most prominent during sleep (Boneva et al. 2007).

 

An overactive sympathetic system has been associated with poor sleep, cognitive decline, inflammation and increased pain, and so it could play a role in many of the symptoms of ME/CFS (Fisher et al. 2010) – see table 1 below.

 

One research group said, "We have studied autonomic function in CFS for some time and our findings clearly indicate a loss of integrity in stress-responsive systems in CFS. Patients with this condition are hyper-responsive to challenges arising both from within the body and from the environment. Even while asleep, their stress-responsive neural systems are on high alert, signalling that it is not safe to relax.” (Beaumont et al. 2012).

 

ME/CFS patients tend to have reduced parasympathetic activity, and increased sympathetic activity, known as “sympathetic nervous system predominance” (Martinez et al. 2014). This same ANS dysfunction is seen in healthy people after engaging in acutely fatiguing tasks, and the lack of parasympathetic activity appears to correlate to feelings of fatigue. The difference is that in CFS, the ANS dysfunction happens after much lower levels of stress or activity (Tanaka et al. 2015).

 

In simple terms, people with ME/CFS are hyper-sensitive to anything from infections and pain within the body to stimuli outside the body, such as noise, heat or emotional stress. The body is stuck in a high-alert – ‘we need to defend ourselves from all threats’ – mode (otherwise known as the ‘fight or flight response’, stemming from the sympathetic nervous system).

 

Relatively Minor Physical or Psychological Stressors May Be Transduced into an Inflammatory Response by Triggering the Release of Inflammasomes and Subsequently Proinflammatory Cytokines

 

From: Resting-state functional magnetic resonance imaging activity and connectivity and cognitive outcome in traumatic brain injury. - PubMed - NCBI

 

Signal amplitude and functional connectivity during the resting state, tractography related to DMN, and the association between signal amplitudes and cognitive outcome.

 

RESULTS:

 

Patients had greater ALFF in frontal regions, which was correlated with cognitive performance. Within the DMN, patients showed increased connectivity in the frontal lobes. Seed-based connectivity analyses revealed augmented connectivity within surrounding areas of the frontal and left parietal nodes of the DMN. Fractional anisotropy of the cingulate tract was correlated with increased connectivity of the frontal node of the DMN in patients with TBI.

 

CONCLUSIONS AND RELEVANCE:

 

Increased ALFF is related to better cognitive performance in chronic TBI. The loss of structural connectivity produced by damage to the cingulum tract explained the compensatory increases in functional connectivity within the frontal node of the DMN.

In tasking other brain regions ensuing Consciousness is irregular (described as 'jittery', 'not smooth', 'wired and tired', excitatory (emotionally, mentally), overstimulated and sensitive to sensory stimulation and executive function thought/planning etc

 

2) Dysthemia - Mood disorder, marked by depressive episodes ('Persistent depressive disorder' not categorised as minor or major depressive disorders)
and Cyclothemia - Mood disorder marked by manic and depressive episodes (not catagorised as bipolar)

second are dysthemia and cyclothemia, and I have different mood and anxiety disorders it’s not uncommon to flow from one partly into another,

For more on Cyclothymia click here

For more on Dysthemia click here

For more on Mood and Anxiety Disorders Following Traumatic Brain Injury please click here

 

here are also components that seem manic or depressive but aren’t, for instance sometimes when I get a break and respite from cfs I’ll go all out as creative as possible (not true mania) as I want to get as much out as possible in that window of opportunity, and sometimes when I’m down with cfs I’m depressed from that (a situational depression not actual depression).

 

3) Pseudopsycopathy - pTBI Comorbid Condition (physiological disorder which presents psychiactric/psychological symptoms)

I remember thinking was different, when from hosptland all tht yr

 

4) Obsessive Compulsive Disorder (OCD) - Anxiety disorder marked by persistent obsessions and compulsions

OCD is a topic that could fill volumes, and for a three year period when it was at it’s worst I did somehow manage to write about it (I had difficulties with basic tasks at that time). The files became inacesible on a computer not access to.

 

 

 

 

 

 

 

 

 

 

 

5) Generalised and/or Social Anxiety Disorders - Anxiety disorder

 

6) Disturbed Patterns of and Unrestful Sleep - pTBI-cf/CFS Comorbid Condition (physiological disorder that presents psychological effects)

 

That said, there is also the challenge of attitude surrounding the entire affair. It is easy to be sad and though I’d like to express it by crying, unfortunately I’m on medicines that prevent me from that. So, I’ve tried to express and heal myself with Karate. Surprisingly at times I’ve remarkably been able to do it.

 

Here also the general anxiety disorder and social anxiety disorder

Answers to five that I previously had OCD from teens onward and it wasn’t as prominent. Then had TBI and it became prominent as well as pseudopsychopathy as well as a host of comorbid conditions such as anosmia, and symptoms tbi including difficulty switching tasks (oi and dizzy etc), difficulties in executive function, sensitivity to stimulus (loud crowded places, etc)

 

My first experience with vertigo was in 1997. I had been eating a lot of sugarless gum. I was stressed and exhausted from 60, 70 sometimes 80 hour workweeks. I was traumatised by my childhood best friend and business partner becoming  increasingly verbally abusive, controling, and eventually sexually harassing and violent. Shortly after, I began taking psychiactric medicine for an ever increasing OCD and for work related trauma. I took Luvox which gave me the pins and made me tired and impotent, so they added viagra, provigil and valium. Later I was switched to lexapro, then paxil then celexa. These gave me irrital bowel syndrome. I stopped the provigil, valium and provigil. Then Later I was given aderal and celexa. Then I was taken off aderal and celexa and given xyprexa. I gained 80 pounds while on xyprexa, which I lost 3 years later. My OCD was out of control and was asking to be comited to an institution. Then I was given prozac, then zoloft, then seroquil. Finally I was given clomipramine then 3 years later cymbalta. With cymbalta I would get 'brain zaps' which eventually led to daily episodes of vertigo, especially when using the restroom. Recently I have been given Prazosine. The medicines all leave me with energy difficulties.

The worst part of OCD at the time was that I was approaching a state analogous to catatonia. I couldn’t proceed in tasks as I was caught cerebrellay, without feeling an innate connection that those without OCD possess, at the time it was difficult to pin down, but after finding the right medicine it’s more clear. This situation was impacted by the anosmia, and as that improves so do all outlooks (and outcomes). t

a couple times experienced schizoid affective disorder

 

The thing that makes it most difficult is the compensatory cognition combined with pseudopsychopathy, ‘wired but tired’ sensation (overly hyper detail observant and quick cytcling thought processing etc, not chill type) and executive function difficulties. The best way to describe this phenomenon is with videos such as Castle rock s01e02 20min in

 

 

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From: Obsessive-compulsive disorder after traumatic brain injury. - PubMed - NCBI

 

Traumatic brain injury ( TBI) neuropsychiatric sequelae are a significant cause of morbidity in TBI victims. Among the recognized sequelae are anxiety, obsessions, compulsions and obsessive-compulsive disorder (OCD). This review addresses the emergence of OCD and OCD symptoms after TBI with an emphasis on neural circuits that underlie OCD symptom expression that may be affected by the injury. Current studies suggest that post-TBI emergent psychopathology, including OCD, is influenced by underlying sub-clinical diathesis, brain injury lesions sites, environmental stressors and the rehabilitation process. Pre-morbid status can be obtained by structured psychiatric interviews, and TBI brain lesions can be defined with advanced neuroimaging techniques. This information along with the management of family and environmental stressors and the enhanced clinical identification of symptoms of anxiety and OCD can be used in the rehabilitation process to improve prognosis after TBI.

 

From: Impact of Traumatic Brain Injury on Dopaminergic Transmission

Even when injury is mild and no obvious anatomic disruption is seen, many individuals suffer disabling neuropsychological impairments such as memory loss, mood dysfunction, substance abuse, and adjustment disorder. These changes may be related to subtle disruption of neural circuits as well as functional changes at the neurotransmitter level. In particular, there is considerable evidence that dopamine (DA) physiology in the nigrostriatal and mesocorticolimbic pathways might be impaired after traumatic brain injury (TBI).