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Inevitable inaccuracies and missing things.

Several throat illnesses as child and adolescent and continued through college, post college, and after I got sick, until it became chronic. Sometimes strep found when it was checked as a child and adolescent. Took amoxicillin for strep many times.

Frequent gi infections as child and adolescent – Hospitalized a few times in childhood and adolescence.

Severe constipation for a period in childhood with regular enemas and a hospital visit

Eczema – onset birth or childhood

Dark under eyes and eyelids – onset childhood. Fluctuates.

Asthma – onset childhood. Exercise induced. Triggers increased over the years. Marked worsening post lung illness 2017. Continued to worsen with more environmental reactivity. As of 2021, slightly improved due to treatment

Difficulty in sun – onset childhood. Worsened after illness and continued to worsen over the years

Symptoms diagnosed as add – childhood. Needing extra test time

Joint hypermobility – birth

Impetigo as adolescent

Coxsackie mouth sores in childhood (and adolescent?)

Premenstrual symptoms – onset sometime in teenagehood. Swollen breasts, irritation, anger, upsetness. Became severe 2019 with two weeks of symptoms each month before menstruation. Progressively getting better in 2020 and 2021 with increases in progesterone cream and acupuncture

Endometriosis and adenomyosis symptoms – some pain present sometimes since menarch or a couple years shortly thereafter, marked increase onset 2015 following two month amenorrhea, with vaginal swelling and worse cramp pain on my period. Worsened over years to highly severe level. Widespread debilitating pain in increasing locations, faintness, nausea. Decreased symptoms begun 2020 with treatment

Get hoarse voice easily from singing or shouting – onset don’t remember. Young teen? Marked worsening at some point post infection 2013 or after.

Bladder frequency, urgency, incontinence – onset childhood. Marked worsening in college. Worsening in 2015. Worsening in 2019.

Chronic back pain – onset don’t remember. Teenager or before. Marked worsening 2014 and frequent debilitating “going out”. Gradual worsening over the years.

Feeling “weird” and depressed followed by heightened emotions of pain – onset 2006. No significant life events immediately preceding. Connection to strep and infection not made at the time so no timeline of infection and re exposure available. It came on over the course of a month. Any natural progression is confounded by having trialed a number of psychiatric medications after that, all of which I responded adversely to ranging from mania from one drug, a thyroid nodule and vomiting to another, other adverse responses, to a severe allergic reaction to another. Riskier drugs like off label antipsychotics and a bipolar drug were chosen after I developed mania on the first antidepressant, on the fear that the mania was a natural progression, even though it clearly subsided after that antidepressant and bipolar was later declared a misdiagnosis. Developed high anxiety and total isolation tendencies and stronger distressing emotions over this period. Did not attend senior year and refused to see my friends and kept isolated from family for this period. This is in contrast from being extremely socially outgoing and having a large number of friends I was constantly communicating with. Other emotions experienced were anger and fears about things. At one point in the course of trialing the last drug I trialed I was not speaking clearly. This not speaking clearly subsided to whatever degree after being off drugs and taking a certain supplement (not a first person account. Don't remember), before I then developed ocd and tics a couple months later. The not speaking clearly resolved within a couple months I believe. Acute distressing emotions subsided in the same period possibly. Isolation changed to being social again. But there was lasting damage to my functioning, in addition to the ocd. This is in retrospect and my memory of this period isn't clear.

Ocd and tics – onset 2007. Age 17. It came on either in days or over the course of weeks. Connection to strep and infection not made at the time so no timeline of infection and re exposure available. First symptoms I noticed were needing to do certain movements repetitively. That seemed to come on suddenly and was obvious to me it was ocd after a short time. It quickly progressed to many symptoms and urges for repetitive movements. Thoughts and actions. This recollection is in retrospect so I don’t know if I’m getting it all right. Worsening of ocd post infection 2013 and continued to worsen over years and then remained at that level. Stereotypically ocd actions and movements that would be identified that way are kept concealed and done in private.

Uncontrollable itching and rashes and face puffing up for long periods of time more than previous eczema flares – onset 2012. Severe flares since, and long periods of moderate or mild symptoms.

Depersonalization – acute onset post infection 2013. Much better as of 2021 but still comes on in some moments when there are other symptoms like disorientation and blurred vision happening. Sometimes without these too

Derealization – acute onset post infection 2013. Much better as of 2021 but still comes on in some moments when there are other symptoms like disorientation and blurred vision happening. Sometimes without these too

Disorientation – acute onset with or post infection 2013. Worsened and different kinds added as years went on. As of 2021 baseline is much better but it fluctuates. It effects my life less and is much less severe overall, but still occurs frequently and intermittently. There's also still background levels of not being oriented to things cognitively in terms of my conceptualization of them. Confusion.

Confusion – acute onset with or post infection 2013. Widespread. My orientation to life and myself and confusion about almost everything. Things unfamiliar. At first onset one of the presentation of confusion looked like not knowing who I was or where I was or what the things around me were sometimes. Confusion and unfamiliarity became greater in many ways 2015 but after the first acute period of onset in 2013 I was more in touch with what a person is and what things around me are in the most basic sense, although that was still confusing too. Improved during treatment in 2019 and continues to improve. As of 2021, feel much less confused about everything but background not knowing how to orient to things or how to conceptualize them still there, just less. Fluctuates too.

Loss of appetite – acute onset post infection 2013 and again 2014 (94 lbs)

Painful ache type feeling similar to hunger focused in solar plexus and not being satiated after food – acute onset post infection 2013. Feeling persisted intermittently over the years

Morning nausea – onset 2013 (pre infection) with birth control one month and continuing post. Resolved

Low level nausea regular – onset post infection 2013. Resolved

Widespread loss of cognitive, emotional, and social functions – acute onset post infection 2013, marked worsening in 2015, and worsening over following years, began resolving with treatment in 2019, continues to improve with other treatment. As of 2021, many things have improved and also greatly fluctuates moment to moment and function to function.

Panic attacks – acute onset with infection 2013. Resolved after some years

Chronic anxiety – onset after adverse response to first trial medication for depression 2006. Acute worsening with infection 2013

Loss of muscle control – two episodes october 2013 during and after bad sore throat possibly one of the many strep re exposures (recorded in my notes 2 years later). One month or less after September infection.

Periods of diarrhea – onset don’t remember began sometime between (post infection) 2013 and 2015

Cold intolerance – onset unclear. Never had great temperature regulation. Worsened post illness. Continued to worsen over the years.

Heat intolerance – onset unclear. Worsened post illness. Continues to worsen over the years. Angioedema, dizziness, increased weakness, loss of balance, lightheadedness, cognitive difficulty, blurred vision, can’t cool down, red, feeling like I’m going to explode, nauseated, increased orthostatic intolerance, headaches

Sleep impairment – onset post infection 2013

Severe abdominal pain – onset post infection 2013, subsided and again stronger (and maybe different) in 2015. During several month period of 2015 onset it was accompanied by intermittent shaking, hot, chills, extreme bloating, nausea, diarrhea, dizziness, blurry vision, more weakness. Hospital visits in 2013, 2014, 2015. Variations of gi issues like this continued on with better and worse periods. Some parasite treatment in 2020 and 2021 has reduced severity and frequency, but remains.

Solar plexus pain, nausea, and tenderness – acute onset post infection 2013 (may have begun to lesser degree two months earlier with birth control, not sure)

Dizziness – onset don’t remember either cute post infection 2013 or later. Either began or worsened a lot in 2015. Worsened over years. Different types of experiences. Starting getting less chronic maybe 2019? As of 2021 much less chronic but fluctuates a lot. It effects my life less and is less severe, but still occurs intermittently

Swollen glands – onset don’t remember. 2013 or 2014 or 2015. Chronic and intermittently worse. As of 2021, chronic swollen glands resolved but intermittently get them

Neuropathy numbness tingling restless pressure pain ache – onset early 2014. Has changed over the years where symptoms have stopped and come back and some don’t show up anymore and some new ones begin. Different symptoms during different times in my life with some overlap. Called it an “arm thing” at first. Began in certain positions on bed and sometimes had trouble sleeping with it. Progressed to very bad in july 2014 and also had leg cramps sometimes at that time.

Possibly other muscle issues that felt like pressure – onset early 2014. On and off periods since

Leg muscles cramps – onset 2014. Hasn’t happened much since about 2019. 8th week post vaccine onset after exertion

Orthostatic intolerance/pots – onset unclear. Identified 2014. Worsened over years

Bladder pain – onset 2015 and continues worsening over the years

Sore throat nearly constant with intermittent worsening once a week to once a month with extra weakness heat and chills – don’t remember maybe 2016. Begun resolving with antimicrobial treatment in 2019. As of 2021 sore throat is no longer chronic but occasional. Accompanying symptoms extra weakness with heat chills disorientation extra brain fog sometimes sweating, still occur in intermittent bursts.

Blurred vision - onset unclear. Was probably somewhat chronic for some time with dips but was intermittent for a long time always paired with disorientation. As of 2021 it effects my life less and is less severe, but still occurs frequently and intermittently with disorientation

Weakness constant – onset don’t remember. Maybe overall weaker after infection 2013 difficult to remember, but definite marked weakening in 2015 and continues worsening over the years. Baseline weakness fluctuates with fluctuations in other symptoms and with fluctuations with exertion (post exertional malaise or post exertional neuroimmune exhaustion). Strong worsening post vaccine 2021

Post exertional malaise and post exertional neuroimmune exhaustion – onset don’t remember if from the beginning or 2014 or 2015 and continues worsening over the years. Immediate and delayed. More weakness and any number of other symptoms. Strong worsening post vaccine 2021

Aching hips – onset 2015

Shaking – onset don’t remember. Intermittent

Feeling hot with and without low grade fevers – onset don’t remember. 2015? Intermittent.

Hot pee – intermittent

Heat in armpits, under breasts, groin, backs of knees – onset don’t remember. 2015? Intermittent

Sexual dysfunction – onset 2015

Bloating – onset don’t remember but marked increase in 2015

Weight gain – onset 2015 spontaneous

Increased igE allergens and histamine responses to environment and food. Hives. Tongue swelling. – 2015

Chronic neck pain – onset 2016. Sometimes severe. Always there. In latest bad flare there was extreme pressure, balance problems, increase in dysautonomia symptoms, usual cognitive difficulty flare, emotional upset, and difficulty getting my legs to walk and to type and words flipping around on a page, unusual for me.

Severe symptoms with airborne and skin contact chemicals, molds, other smells, heightened sense of smell – onset 2016 and worsened over the years. Slightly improved in some ways

Sound and light sensitivity – onset unclear. Sometime post infection 2013. Continues worsening over the years.

Receding gums – onset unclear. Identified 2016

Hair loss – onset 2016. Intermittent

Jaw issues – onset unclear

Heart palpitations – onset unclear. At some point in 2020, became progressively less chronic but remains intermittently

Widespread chronic pain – onset 2017

Ear pain – onset 2017 following water getting in ears in ocean with some infection, difficulty breathing for a few weeks. Acute ear pain gradually decreased over the course of months and then years but still can barely get water in them without pain and inflammation.

Neurological issues from use of sound in headphones – onset sometime post ear pain onset 2017. Cognitive difficulty, blurred vision, dizziness, disorientation, derealization, my typical neurological problems

Pain with intercourse – onset 2018

Symptoms from oxalates – onset unclear, marked worsening 2019 and continued to worsen over the years

Vulvodynia – onset 2019. Improved with change in oxalate intake

Widespread joint pain – onset don’t remember. Marked worsening 2019 and continues worsening over the years

Headaches – onset 2020. Intermittent.

Angioedema – onset 2020. Intermittent.

Waking up during sleep with a numb limb can’t move – onset unclear. Worsened 2020. Occasional. Wake up in crisis mode to chop the limb to bring it alive again. Heavy. Painful. Very fear inducing. It’s like my body sets off huge alarm bells

Subluxations – onset 2021

Neuropathy burning – onset day 5 post vaccine 2021.

Muscle burning – onset 5th or so week post vaccine 2021

Muscle twitches – onset 8th week post vaccine 2021. Amount increases over days

Muscle cramps after use and harder to move after – onset 8th week post vaccine 2021

Frequent waking and jerking awake – onset unclear. Over the years it was every now and then. Could occur with fearful dreams and sleep paralyzation sometimes. Post vaccine 2021 8th week came on with a worsened presentation with more frequent awakenings after drifting off, repetitively over and over with gasping and sometimes yelling, preventing me from getting more than 2 hours of sleep combined.

Severe insomnia – onset 8th week post vaccine 2021. Had been building for an identified amount of time to more days of less than 5 or 6 hours. From maybe 1 day or 2 to 3 or 4 days per week. Post vaccine worsened. Maintained more alertness and mental resiliency with lack of sleep that I usually fall apart from quicker. Sleep was affecting me differently. 8th week post vaccine a larger lack of tiredness came on and I felt awake all the time and couldn’t sleep when I was tired. Resiliency to lack of sleep was much greater, with maintaining an alertness and less deleriousness than would have been present previously, despite overall increased symptoms and deterioration. Less than 2 hours of less per night combined.
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Reactions: kewia and Dmitri


Hi @PisForPerseverance,
thanks for sharing your story, I'm sorry for your history of painfulness. Hope you find your way to health.

You have muscle cramps and muscle twitches, did you also experience symptoms comparable to MS-HUG?

What are your jaw issues, could you elaborate more?

Which vaccine did you take?

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