Chronic Lyme & Tick Borne Disease Symptoms
Note- Patient was ill for more than thirty years from Lyme and multiple tick borne infections and kept track of some of the presenting and progressing symptoms. Posted with permission of the patient.
SKIN and Lyme ACA Skin Presentations
Itching, extra dry or oily patches
Bumps- unexplained, just under the skin surface
Varying shades of red patches on ear lobes
Rash ACA on left foot and ankle
Rash ACA on right foot and ankle
Rash ACA on right hand and up right arm almost to elbow
Rash bumps (white calcium (?), here and gone later) under top layer of skin near ACA areas
Rash white bumps on chest along breast bone and below
Blue, yellow, green discoloration on palms of hands
Blue, green discoloration on ankles and lower legs
Pink, yellow and blue discoloration on feet and lower legs
Pink knuckles and hands
White shinny fingers with abnormal swelling
White shinny feet with swelling
Fish net rash on lower legs
Fish net purple/blue rash on thighs
Fish net rash (pink and purple) on breasts
Lyme rash reappeared (ECM/ACA) on breast/stomach/side above rib cage (up to 10 inches)
Smaller ECM (up to 5 inches) on left side ribs reappear (bright red, raised, warm, slightly scaly, well defined edges)
Pinkish rash which looks like tiny spider webs but it is underneath the upper skin layer
Pink rash across butt looks like a faded bulls eye rash
Bruising easily and/or lots of bruises with no explanation
Bright purple/red thumb print sized (almost looks like blood) spot appears on chin just below the center of bottom lip.
White blister-like bumps on palms of hands
Hands turning bright red all over, mostly on palms
White scaly patches on elbows and running down the forearm along bones
Reappearing crusty light brown rash on forehead between eyes- slightly painful and itchy
Multiple red rashes on arms and across belly the size of a silver dollar, slightly raised, slightly warm
Veins coming to the surface with blue and pink tinting around them and what appears to be blue pools of blood
Cancer Diagnosis- Multiple Times
1. Diagnosed with breast cancer due to "lumps" seen on mammogram. Ignored radiologist and I insisted it must be related to Lyme. He told me I'd be dead within two years if I didn't do what he said. 25 years later- I guess he was wrong- but the trauma of going through the experience took a lot out of me.
2. Twenty eight years later was diagnosed with a rare form of breast cancer that, according to the NIH literature required immediate surgery- a double mastectomy- and chemo and radiation. Survival rate was only 20% at the one year mark if treatment was immediate and complete. Given RX's, tests to do, lab slips and went home. Decided to not put my weakened, infected self through all that and tossed the paperwork and prescriptions in a file. Told absolutely no one about it, held it all in and thought about it constantly, and prepared for the end. At the one year mark I was still alive and have since been trying to forget about it. Obviously they were wrong too.
3. Diagnosed with colon cancer about 3 months after the one year mark of the second breast cancer scare, just out of the blue. Doctor had no tests to indicate cancer or anything else, and I had no symptoms to indicate there was a problem. I even checked to see if he had the wrong chart because he seemed so off-base. Finally, after the worry and scare ate at me long enough I decided I just had to try to forget it and wrote him up as another nit-wit.
4. Diagnosed with uterine cancer. Doctor claimed I had a tumor the size of a grapefruit and ruled out everything else. After spending weeks horribly upset because I'd been very ill and had not been diagnosed with Lyme yet, I was told by another doctor that my uterus was "tipped backward" and there was no tumor. The first doctor was wrong. He put me through the worst scare of my life.
5. Diagnosed with bone cancer- tumor picked up on dental x-ray and doc was sure it was cancer. Tumor was eventually removed with surgery and was not cancerous. The waiting to find out yes or no nearly killed me.
6. Diagnosed with cancer because of a large (size of 1/2 an orange) cyst on my shoulder. One doc said cancer, another said not cancer (they didn't think), another said cancer- surgery immediately, another said no cancer and don't worry about it. Finally had surgery to remove it. It was not cancer, but it grew back.
7. Diagnosed with ovarian cancer. Woke up one morning out of a deep sleep with severe pain in my belly/chest area and had trouble breathing. Went to doctor (on way to ER, but stopped at docs office first). Tests showed there was a 19 pound tumor growing in/on my ovary that had gotten so large it was pressing against my rib cage and hindering my breathing. Refused chemo and radiation, only agreeing to surgery so I could breath and reduce pain. Refused a total hysterectomy so surgery went through belly to remove tumor. Excellent doctor. Recovered without incidence. Tumor proved to be not malignant.
MUSCLE PAIN IN BODY
Muscle pain or spasms/cramps in head
Muscle pain or spasms/cramps in neck or very stiff neck
Muscle pain or cramps in upper back
Muscle pain or cramps in low back
Muscle pain and/or cramps in lower arms or upper arms
Patches of burning pain along outer sides of legs- very painful
Inside of knees- soreness and pain- too tender to put knees together
Connective tissue pain or soreness in arms
Connective tissue pain in legs
Connective tissue pain in trunk
Elbows, above and below, painful and very tender
Blisters and peeling skin where clothes rub against body (pants on knees, long sleeved shirts on elbows)
Red bumps scattered at various times- disappear on their own
Delayed response to external temperature changes. Example: After being in very hot weather no reaction to the heat, then after 20 minutes in air conditioning start sweating as if THEN it is an appropriate time to do so.
Fever noticed- relapsing
Lower body temperature generally- 96 degree range is normal now
Cold hands and freezing feet in a warm environment
Night sweats- drenching
Day sweats- drenching
Inordinate amounts of sweating- pouring fluid
Sweating on left OR right side only
Mini-sweats on face and upper body only
Feeling the cold once out of the cold environment- delayed reaction- 20 minutes normally
Top 1/2 body (head to toe) very cold while laying on left side
Top 1/2 body (head to toe) very hot while laying on right side
Sudden rise in temperature- high fevers- fluctuating up and down
NUMBNESS, TINGLING, PAIN
Extreme sensitivity- Can’t lay on wrinkled sheets without it being very painful and feeling like I’m being bruised by laying on rocks. Princess and the pea syndrome?
Need pillows between legs, knees, and ankles so they won’t touch at night, and under my arm so it won’t rest against body and cause a lot of pain
Wicked buzzing/tingling all over body, sporadically
Lower arm hurts where arm isn’t (Phantom pain?)
Pain in right and left sides just below rib cage, tingling and burning, very severe at times
Entire rib cage pain (severe) - the tissues in between the ribs burning like on fire
Neurological pain (burning hot “cheesecloth” pattern pain) along left trunk, outside of left leg, left side of face and neck, left rib cage, left shoulder and left arm- sometimes switches to right side- then later back to left side
Painful to touch skin anywhere, can’t put on clothing without pain if it touches body
Face numb on left side and won’t move properly or react. Droops on either side at various times. Right side won’t react to movement commands.
Lower lip numbness and tingling...like numb with Novocain
Left side of face numb and tingling- annoying and painful
V-shaped crushing pain from both ears to back of lower neck
Knots in muscles along both arms and legs..too tender to touch even lightly
Knees tender and stiff or sharp pain in the back knees
Creaking pain and tightness in knees as if they are stuck or locked in a certain position and need oil to loosen them up.
Numbness in arms, right or left, or both
Tingling in elbows- right or left- like funny bone has gotten “stuck” in a bad place
Stabbing pains random, sharp, violent, sudden
Pinprick pains, random
Twitching of facial muscles, eyelids and eyes
Tingling and sharp pain in the nose (usually one sided), cheek, ears, or face
Drawing up of arms towards chest- as if they are locked in that position
Tendonitis type pain in and around elbows, wrists
Pain in elbows (one at a time or both) that feels like someone has drilled a hole through them and set them on fire
Pain in elbow(s) and or knee(s) for 5 days or so- then the upper layers of skin feel like they are separating from the lower layers. It fills with fluid in between the layers then the upper layers peel off like a large blister had been there.
Large patch of fluid filled skin (?) on left side under my arm and down across rib cage- very tender to touch- and mushy with fluid
Every few weeks to a month the brain swells – bad headache- lasting many days or longer
Face droops on one side, on/off- right or left or both sides
Bones in neck make a dry clunking sound if and when muscles give out, especially on the left side deep into the chest area
Neck swollen and tight/hard and very painful
Can’t turn head from side to side without a lot of pain, and it gets stuck and won’t turn
Hard or impossible to lay ear down towards shoulder- neck locked
Crushing pain in head in the outer layer of skin and just below it
Squeezing pain in head- feels like the 2nd layer inward is screaming and painful
Hard knots along the base of skull- right or left side or both
Twisted and pinched muscles on head- so tight they feel like a taught banjo string
Tender or sore spots on head (often in the top center area)- VERY painful
Bulging on top of my head in “soft spot” area- like a balloon is in there and is on fire
Hard tight knots on skull- above jaws and ears
Ice pick in the ear sensation- very sharp stabbing pain
Whole body feels numb or disconnected from brain and there is no pain during that time
Tremble (mild to severe) if trying to move faster than a snails pace.. an internal type of trembling
Vibrating feeling in the head and back of neck as if a jack hammer were there
“Jolts” of something (feels like lightening) which thrashes body upwards and wakes me out of a deep resting state, usually just as I am falling asleep
Poor balance, or tipping over sideways for no apparent reason
If closing eyes or lights go out I fall over or fall to the floor in a pile- not knowing which way is up or down
Leg thrashing or jumping for no reason- sometimes with pain
Loss of coordination- like swimming with all limbs
Clumsiness, stumbling, running into walls- especially hitting door ways going through them
Late to bed because I can’t sleep
Sleep too long once asleep
Waking too soon
Waking up repeatedly at night for no reason
Feel drugged or paralyzed upon waking and can’t move my body. Need to lay in bed until movement returns- sometimes for an hour or more- sometimes for two hours.
Don’t feel rested after sleeping
Two hour minimum of the “dead brain” feeling upon wakening. Not able to think clearly or remember things.
Sleeping strange hours and not being able to sleep “normal hours” Sleeping usually 4-5 am till 9-10 am.
Napping in the daytime- overwhelming exhaustion hits.
Totally exhausted feeling, day in and day out.
Feeling some energy for a few hours- then suddenly it feels like the energy door closed and I am drained totally.
Complete reversal of internal clock. Sleep during the daytime and awake at night- for years at a time. Nothing helps reverse it.
Head gets super hot while laying on pillow.
Chest cavity feels crushed when laying on one side. Feels as if the chest and contents detach from what normally hold it together and contents drop to lower side as if gravity made the contents move.
A lot of wild dreams- frightening dreams sometimes.
A lot of arm and leg movement when sleeping, so violent it wakes me up.
Wicked Charlie Horses in legs when sleeping that wake me and make me get out of bed to walk to release spasms.
Once awakened from sleep can not go back to sleep- allowing only a few hours of sleep a night.
Laying for over an hour in bed and just can't fall asleep. Try again later to sleep and same thing happens.
Talking in sleep. Been told some of it is total gibberish as if in a foreign tongue.
Waking up with music running through head over and over as clear as if it were playing somewhere.
Open mouth to speak- no words come out as if they were lost somewhere.
Can’t follow more than one person talking to me, or me trying to talk to more than one person at a time.
Mouth does not co-ordinate with words
Refusal to speak because it is too difficult at the time.
Big delay from having question asked and responding to it. Have to think of an answer or possible answers and see a picture, then describe the picture.
Lose track of thoughts while speaking, often in mid-sentence.
Can’t understand simple questions and sound stupid or as if I am lying trying to give answers.
Not knowing if answers are appropriate to questions asked when done responding.
Forget what I am saying or thinking about in mid-sentence and can’t recall it at all.
MEMORY AND COGNITIVE
Long term memory loss- noticed more things missing from past things I have done
Short term memory loss noticed more or less problems
Problems with numbers and sequencing them or counting
Can’t remember my phone number
Can’t remember phone numbers or addresses of regular people I call or write
Can’t remember how old I am
Don’t know the date.. month, day, or year.. at any given time
Forget to check mail for more than one week at a time
Forget list to go to the store. If I take it I forget to bring it in the store.
Get so I don’t know where I am and have to really try hard to figure it out
Forget where vehicle is parked or what door I went in- totally unfamiliar
Lock keys in the car more than 8 out of ten times
Forget to take shoes or necessary items in the car when going out somewhere
Forget coat, sweater, or clothing when going out.
Get to town and forget why I’m there. There is a long re-orienting time to get the job at hand completed
Can’t go from here to there without starting from a familiar place (must go the long way or start from scratch to think how to get somewhere)
Rambling on in great detail while talking and skipping around subjects- like there is no control
Short attention span while doing things and wandering off task
Short or no attention span while listening or trying to read
Agitated at others while they speak, for no reason except that I have to listen to them. Listening is difficult because I must try to absorb everything that is said, mix it up so I can understand it in my own way, then try to find a spot to “store” it so I can respond. All the trying in the world doesn’t help the situation a lot of the time.
What meds are you taking?
How long before herx?
Worse than last herx?
Fever or chills?
Depression, wimpy, whiny?
Sleep more or rest more?
More pain and where?
Problems that were the worst?
How long did it last?
Did anything help it?
Any functioning during herx or bed/home bound?
Did you stop medications at all or back off?
Allergic reaction to any meds?
Loss of bladder awareness
Symptoms of UTI
Blood in urine- visible- or by test
Dark colored urine- like cola
Dark colored urine- like strawberry soda
Urine foamy- like soapy
Strong smell of ammonia in urine
Strong smell of urine
PMS symptoms exaggerated- ver much so.
Early menopause symptoms that lasted for years.
Irregular time, early or late
Irregular amount of flow- flooding
Disturbed estrogen and/or progesterone levels
Loss of sex drive
Moodiness, wimpy, whiny
Flooding 10 days to 14 days
Flooding month round- non-stop for months to years
Very high estrogen levels, very low progesterone.
Pain in stomach or intestines
Abdominal pain and cramping. like perhaps ulcer pain
Spastic and painful colon and muscles inside colon painful
Colon spasms- pain strong enough to wake me up from sleep
Stomach acid reflux- burning
Indigestion and burning not caused by food
Loss of day time appetite
Every few weeks vomiting spells with headaches for a week or more
Eating barely anything for days- then like a light bulb went off- I feel starved and eat anything and everything around me
Photosensitivity to certain kinds of light, such as:
A. Flickering light by fluorescent lights- causing seizures, panic attacks, misery, violent behavior, craziness, crying, or other inappropriate responses
B. TV or computer screens sensitivity to where I can’t watch or use them
C. Headlights of oncoming cars or shining reflective lights hurt eyes and confuse me
D. Halo’s around lights, especially headlights, and reflective street signs
E. Moon- see double or triple moons
Swelling around eyes and eye lids
Eyes water for no reason and light makes them water more and hurt
Floaters- triangle shaped or rectangled shapes- dark box with dots inside on clear background- white, silver or black colors
Yellowish, greenish, or white discharge from eyes
Foggy covering over eyes
Can’t focus far to near or back again- sometimes all day long
Like looking through a white film over everything I see
Left eye can’t turn to the left
Dark circles (sometimes purple) under eyes and swelling or puffy
Purple/black eyes with yellow skin on the inside corners
Black eyes with blister-like bumps at edges
Transient blindness or blind spots in center of vision
Sensations that the light is fading out or getting dull
Argyll-Robertson pupil- left side
Pupils don’t close together at the same time
Sunlight hurting eyes to the point of pain, tears, dizziness, and nausea
Blood pressure too high or low (max and min- 240/140 high to 40/nothing)
Irregular heart beat or skipping beats
Fast pulse, weak, thready
Thudding or thumping heart beats here and there, especially laying down at night
Squeezing chest pain or like someone is standing on my ribs feeling
Like bra is too tight feeling
Skipping beats or dancing
Heart beats hard and thuds with light activity
Fluttering fast heart while laying down at night or while trying to get up in the morning- like heart is trembling
Must move by holding onto things and only from chair to chair and heart is acting up
Food allergies from leaky gut- different ones- any better/worse
Sinusitis and clogged up
Postnasal drip- constant
Allergic or chemical hypersensitivity's problems
Soaps, gas, fumes, pine trees, perfumes, new car interior, new clothes smell, candles, etc make me feel very sick
Overly dry sinuses
Very thick and sticky phlegm (clear).
HAIR AND FINGERNAILS
Hair loss in circle patches or general thinning
Hair growing faster than normal
Fingernails break easily and lose strength
Fingernails growing fast and strong
Body hair growing faster or slower
Ice pick type pain in one ear or the other
Jaw pain like a severe tooth ache
Clenching teeth day or night or both
Jaw popping out of joint
Jaw overlapping at joint
Jaw pain R or L
Tooth pain- upper- lower- right- left
Lip numbness or tingling or half of lip numb
Tongue- loss of strength or movement- paralyzed on one side
Difficulty swallowing or chewing food or liquids- choking often
Gums swelling and fluid filled pouches along bones and gums
Ear and face pain from jaws hurting
Continual accidental biting of tongue (ver hard) when talking or trying to chew
Jaw bones pop out of joint and that hurts
Water on the knees, swelling, or knee pain
Bone pain anywhere (especially very tender shins, arm bones, leg bones)
Gout-like pain in toe- sharp stabbing pain
Dislocating shoulders without reason other than from muscle spasms
Pain in hip bones (pelvis bones and edges) and tender to touch
Sharp pain in tailbone when trying to sit
Feels like one hip is fused with the other.. not two separate ones
Swelling over the bones in elbows
Arthritis pain in joints
Fluid filled lump at the base of my tailbone- size of a golf ball- eventually breaks open and drains internally.
Very painful shin splints- not just in front, but sometimes on outsides of calves, inside calves or in the back of lower legs. Too painful to walk for weeks at a time. Repeated episodes.
LYMPH NODES AND GLANDS
Swollen glands in neck or behind or below ears
Swollen lymph nodes and extremely tender along breast bone
Swollen nodes in groin area
Swelling nodes in groin and infected/draining
Swollen nodes in arm pits
Other swollen lymph nodes/glands
Swollen, puffy, painful spleen. (Yes, I CAN tell Dr. Dummy- had it before several times)
Kidney pain on either side
LUNGS AND CHEST
Pressure in upper chest, below the center of the neck. In upper sternum and across, from shoulder to shoulder.
Noticing VERY shallow breaths, like I am hibernating
Difficulty breathing. Shortness of breath feeling, like not getting enough air when I breath.
Feeling like diaphragm is not wanting to move on its own
Hyperventilating spells if sitting or standing upright that are severe enough to seek medical assistance
Shortness of breath- panting
Rib soreness and pain or muscle spasms
Burning pain between ribs. VERY painful making entire rib cage hurt badly.
Feeling as if I have to remind myself to breathe. Many episodes of it. Very scary.
Ribs twisted out of place from muscle spasms or inflammation and they become very painful. Like a stabbing pain.
Rib muscles spasm and shift ribs out of place so they overlap each other. They also twist out of place along the sternum causing sharp pain when ribs meet sternum.
EARS AND HEARING
ALL noise startling and annoying to the point of maddening
When phone rings I jump, badly startled
Ringing in ears
Buzzing in one or both ears
Pain in and behind right ear. If I lightly pull on the outside of my ear- something breaks loose and drains inside my head. Like ice pick pain accompanies it- shooting and stabbing. Extremely bad pain.
Off balance- walking sideways when trying to go straight and legs crossing over each other instead of moving forward
Can’t watch TV or understand it or I don’t have the attention span to follow it
Strain to see TV and it hurts eyes and/or ears
Furnace running and refrigerator humming noise sounds very loud and makes me lose focus and be unable to think right
Can tell music is on, hear it, but don’t “absorb” it. Sounds like annoying noise sometimes.
Can’t listen to the pitches in women’s voices sometimes without wanting to scream
Voices sound faint or distant or muffled
Can’t pick up voices if there is any background noise
Hypersensitivity to sounds
Noises are loud and echoing
Loss of hearing and must have things turned way up to hear them.
Use of phone causes ears to turn red and burn badly
If wind blowing across ear (like window down driving in car) it makes me very ill.
Feels like a balloon is in my skull instead of a brain. Seems to feel swollen and “bulging” and as if it pushes my head bones from the inside and there are bubbles trying to pop out but they can’t
Swollen jaw and sinus area on right with extreme pain. Hurts to touch even lightly
Swelling and pain behind the ears, mostly right side
Jaw bone areas swell with fluid pouches and feel raw
Super tight bathing cap feeling across entire head causing tight, skull crushing headaches
Swollen foot- elephant size...not normal edema... so bad that toes disappear in swelling
Legs swell from knees down and turn very white
Ankles and feet swell
Nothing swells and feet turn very white with a bluish tint in places
One arm ice cold and tingling or numb- especially right upper arm on the back side.. other arm not as cold and numb, sometimes even warm while other one is cold
Weak and unable to stay up for more than 2 hours at a time
Extreme weakness in body
Hard to hold head upright- no neck strength
Moving around means going from one chair to the next before exhausted and having to sit down
Can’t seem to catch breath
“Instant” memory problem, forget in the middle of something
Do not think of things in advance of doing something that would be normal to most
Run into walls or doorways, misjudge spaces and distances
Tip or fall over while walking or standing
Misjudge distances to place items on something
Get distracted and wander away from tasks- and start new tasks
Repeatedly bumping into things with the left side of the body
Dropping things from hands for no reason
Forget something is being carried in my hand till hand is needed again for something else
Lost in my own neighborhood area or going to wrong places when I know better
Distraction or loss of focusing- the “duh” attacks
Feels like I have to tell my arms to move when I need them to do something or reach out
Feels like I need to tell my legs to move and in what direction to be able to walk
Delay in “thinking... and then doing”- Slow response time
Not recognizing that colors are all around... only seeing shades of black, gray, and white
Seeing a color totally different than the actual color- (see green phone and it appears purple)
Not seeing 3 dimensional, things appears flat, or one sided
Ground feels like it is moving, rippling, swaying- or like I am walking on a boat
Words on written page look like this : word (The end of the word looks like the print is smaller than the beginning)
Words sway or bulge out from the page and wave up and down or move on the page
Problem with multiple concepts or doing two things at once
Inappropriate words.. say “pink” when looking at a “blue” object
Inappropriate words when speaking- like saying tomorrow instead of yesterday
Saying words messed up, like Sountain Foda
Personality changes- better or worse
Hostile for no reason or fits of nasties or yelling
Crying for no reason or too much
Handling stress poorly- stop the world I want to get off feelings
Saying numbers wrong or not being able to say/write the name of the number being seen
Word, letter, or number reversals when writing
Writing letters or numbers backwards
Abnormalities of taste
Abnormalities of smell
Heightened sensitivity to vibrations or movements
Sensations of falling forward or backwards
Walking with an unsteady gait, stopping to be balancing along on table edges, walls, etc
Walking stiff legged and like a monster or a severe waddle
Legs giving out while walking
Knee buckling for no reason
Emotional disaster days
Feeling apart from everything
Intrusive obsessive thoughts
Intrusive images or sounds
Trouble finding words needed to communicate
Trouble reading and understanding what was read
Feel like my mind is gone or going fast
Obsessive- compulsive stuff
Objects seem distorted, side ways or misshaped
Can’t make a straight line and lines appear slanted when they are straight
Vivid nightmares or repetitive thoughts at bedtime
Hallucinations during the day
Loss of drive and “want to”
No imagination or “sparks”
Perceived alteration of limb size and shape- jumbo or tiny, long or short- circus mirror
Feeling like there is a delay between an event happening and knowing it happened
Feels as though time is standing still
Feels like there will be no future or “later”
No idea if I have responsibility of anything other than what is in my face at the time
Forget family exists unless they are there in front of me
Feels like sinking sensation as though legs (or car wheels) are beneath ground level
Feelings are dull and blunted
Capacity to experience most emotion is lost
Having to act as if playing a “part” to get something done
Ideas are in my mind but I see them from an outsiders view and deal with second person
Withdrawn and anti-social
Thoughts of wanting to quit
Thoughts of wanting to die but not have to kill myself and make a mess
No smiling or fun in my life
Fear that is not justified and blown out of proportion
Fix food and forget to eat it
Miss meals totally because of forgetting
Weight gain or loss
Chocolate, salt, sugar, or other cravings
Tested and had developed 49 food allergies. Before Lyme there were none.
Eat all day some days and barely at all other days- either very hungry or not at all hungry.
Yeast infection in mouth
Tongue splitting open
Not able to taste food or smell food
Vaginal yeast infection
Skin yeast infection
Sore or scratchy throat, especially one-sided
Voice changes while speaking
Voice is gone sometimes.
Hypoglycemia like feelings
Flip back to southern accent, especially when tired because I can’t control it.
NEW SYMPTOMS, PROBLEMS, TESTS, PROTOCOLS, OR COMPLICATIONS
Holding arm out to tune radio.. arm gets stuck.. tingly.. numb and painful. Try to use the phone and arm and hand goes numb holding the phone even for a couple of minutes.
The toaster incident... Holding a small toaster that needed to be mounted to a section underneath upper cabinets. Holding it for no more than 60 seconds at a time, maybe 3-4 times so it could be attached by someone. Several hours later the muscles in my upper right chest felt as if they had been through a meat grinder and were bruised and had a mushy/swollen/bloated feeling. Later neck spasms and off balance. This is typical.. and happens often... but this incident explains it pretty well. I try hard NOT to let this happen by not doing things I think will cause it.. but I can’t always tell.
Many days it is a major effort to cook an egg, or put ice in a cup and get a drink.
The sandwich story: I need several things from fridge to make a sandwich. Instead of being able to go to fridge and get all the things (or several at one time).. I make one trip for mustard then go sit it down, one trip for cheese and go sit it down, one trip for bread and go sit it down, and one trip for meat and go sit it down. (Weird I can say it and write it in logical form.. but when it comes to doing it.. it is all separate steps, one at a time.. and I don’t know why I can’t get that fixed or straight!)
BUT.. putting away the stuff.. I pick up what I can carry in one trip that all go to fridge and put it all in during one trip. That is, and comes naturally.. but NOT the getting stuff out! It makes me crazy because I can see this.. but can’t FIX it. If I must make two sandwiches.. I do the same thing! One trip for this, one trip for that, etc.. get it all there..
Then make one sandwich at a time, step by step.. then start the second sandwich step by step. I even complete the first sandwich, go get ONE plate and cut the sandwich... THEN start the second sandwich and finish it the go get another plate and cut that one. And although I KNOW I do this and it is a waste of time and energy, and does NOT make sense and it makes me NUTS.. I do it EVERY time!
This happens with many other things I try to do.. but making a sandwich is done more often.. and makes me not want to eat rather than go through this... and is more obvious to me than many of the other things I do.. so it drives me more crazy!
Same with spaghetti sauce. I can tell you how to make it in about 60 seconds or so. But trying to make it.. it is a big long drawn out mental nightmare. I never think of making supper till I am very hungry or it is late. Bad deal because most of it is frozen so I don’t eat right. Duh.. I usually.. if alone... eat one thing for a meal.. a can of green beans for example.. then I go back when that is gone and get a container of yogurt. When that is done.. if I’m still hungry.. I get something else.
Drive with earplug in left ear or I get very ill.. unless pain prevents me from doing this.. Thought it had something to do with the wind from open window blowing across my ear and noises while window down??? Can’t drive more than about 10 miles most days without problems. When I get to where I am going I sit for a few minutes (up to 1/2 hour) in the car to “re-orient” myself to see what I was going to do, stop swaying, and plan the get out of the car procedure.. get keys, lists, cash, etc. Can’t do it all right at one time to save me. Keep 3 extra sets of keys outside vehicle because if I do lock it.. I forget keys are in it. I lock my keys in the car at least 3 out of 5 times.
Lean on stuff to keep my balance or touch things with my hands as a guide so I don’t fall. Must turn around slowly or carefully some days or I will fall.
Can’t sort easy things like silverware, socks, papers.. if I do try, it takes a long time.
Can’t do checkbook or write checks. Don’t have an “understanding” of money.. sort of abstract??? $500.00 feels the same as $500,000,000.00. No real difference??? Cash seems to go fast. Need money.... spend money.. no planning in advance ability or thoughts.. Mess up with that problem a lot and big time.
Stress/panic severe around several people at a time or while in a store...noises, lights, smells, colors, lots of people moving or talking... Also can’t keep straight with more than one on one conversation.. it is like torture. So.. that limits parties/friends visiting.
Bridge cross bars.. or traffic cones.. I get a weird feeling, hard to describe.. like I am sinking and low to the ground. As if the bottom of the car is at road level and my feet will start dragging the ground.
Mirrored walls makes me fall flat out or lose my balance. Clear glass windows in a wall make me lose my balance/orientation.
In a shower my balance is lost if printed designs are on the shower curtain. Can’t stay in shower without getting panicky feeling. Had to change to opening curtain.. then to solid white walls and curtain.
Upsetting for some reason to look at small patterned designs or stripes. Get a “hyper” feeling or dizzy or both?
Venetian blinds and sunlight coming through them make me nauseated and/or disoriented. Feel as if I will fall over.
Being cold, hot, hungry, etc. all make me feel bad in the same way. No way to tell the difference unless I use a process of elimination. Heat/cold not “felt” and body does not react appropriately to these conditions. Internal thermometer “off”.
Shadows on the walls, especially ones that are moving, throw me off balance. Or shadows on a road- like the tree shadows make me confused and panicky.
If the sun goes behind the clouds.. sort of dodododo dodododo freaky feeling. I get spacy or something?
Right arm goes numb if held out forward. Little finger and ring finger go numb first, and the back of my arm....
Barrettes hurt my head after a few minutes (bruised, mushy head, severe pain) and make muscles spasm and neck pull and messes me up for days. Nickel in my back pocket feels as if I had a poker sticking me in that spot and then that leg cramps, then my back hurts, feet hurt, and muscles spasm begin all around that area. Same with a belt, bra, anything touching my body. I call it the princess and the pea syndrome.
Earrings make my ears feel as if they are on fire and lopsided.
“Stuff” needed all over the place or I feel lost. Keep several of everything... to be sure I can find “one” of that item when needed.
Keep anything that I could possibly need while out somewhere, in my vehicle. If I don’t have those things I won’t go out.
I can drive vehicle with shift knob.. and am often holding onto it all the time to keep more level or balanced. Difficult trying to drive an “automatic” vehicle... or any vehicle other than my own.
Use an ear plug in left ear and don’t remember to down shift gears when needed.. and I don’t know where the gears are located if I can’t hear. That really doesn’t make sense??? I must use “hearing” as an “automatic” guide as to when and WHERE to shift?
Forget to remove foot from above the clutch pedal for a long time after being on straight roadway.
Now it really hurts and throws my elbow “out”.. dislocates it.. if shifting gears... Makes arm “rubbery feeling” and numb.
Move in tiny mentally thought out steps- touching objects and touching the next item before releasing the first, as if they were connected.
Will wander around with something in my hand until my hand and arm hurt with pain and spasm because I just forgot to put whatever I was holding onto, down.
No facial recognition.. no math skills.. cognitive testing. Drop in IQ over 20 points? Organic brain disorder is what it was called from the test results. And dementia. And mildly to moderately mentally retarded.
I can remember words to songs better than most people... comes naturally. Can’t remember events earlier in the day. Must think hard to remember how to tie my shoes.
Get discombobulated if “things” are done out of sequence. There is a “way” to do things now.. before it was natural. Now I must concentrate on doing the task in the right order.. or I have to start all over from the beginning.
Lurching forward feeling. VERY unbalanced feelings. Like I am going to fall over in the sink while doing the dishes. I lean on the counter to stay upright and not tip over.
Vehicle seems to wave back and forth after being stopped and turned off. It doesn’t really move, but I feel the wavy side-to-side motion.
No holding the pillow under my chin when changing pillow cases. No strength to do that any more.
Burn myself just about every time I try to cook. Getting REALLY tired of that. And I burn the food too, which I rarely did prior to being sick.
Clenching steering wheel while driving. Holding items in hand too hard and cramping hands and fingers. It is as if pressure doesn’t have a limit or I don’t have any control over pressure I put forth?
Seem to be able to write fairly well with keyboard (slow but manageable).. but verbal is not good sometimes. Takes lots of time to write and review and rewrite and focus.. but I can sometimes do it with enough time. Can NOT write on demand or with any distractions at all. Must be total quiet.
Must be quiet in the room when I am eating or I get distracted and will choke on my food.
Need at least 3 pairs of glasses for different distances and then 3 more for light/dark use. Eye sight now down to 20/80. It was 20/10 prior to all this. Very “fuzzy” vision this past two weeks. Can’t focus my eyes if even a tiny spot of dirt is on the windshield or on my glasses. Keep window cleaner and towels in vehicle to constantly clean windshield. My eyes will focus on the spot rather than what I am looking at... and then go back and forth.. like a camera while trying to focus on a close up flower and the background scene. My eyes will zoom in and out and in and out... fuzzy close or fuzzy far away.. constantly moving.
If laying on my side I must sleep with a pillow between my knees and another one between my feet and ankles... or it feels as if there is a duckpin bowling ball sitting between my knees and a concrete block on top of the upper leg weighing it all down. I must have another pillow under my upper arm and between it and my chest so they don’t touch or the same sensation happens.
I had to wear a sweater one day this week because it was cold. Within a half hour I felt as if I had on a coat that weighed about 30 pounds... and I was about three feet tall due to the weight of the sweater pulling me towards the ground. I also felt like the ground was coming up to meet me and/or I was walking an incline up a hill. I got so freaked out I started sweating and felt very ill and had to stop getting groceries and leave to go home.
Require Assistance with:
Book keeper to pay bills, write checks, mail payments, make deposits and do bank statements
Assistance to clean home- floors, vacuum, bathroom, change beds, laundry
Yard work help- cut grass, rake leaves, rotor tiller, mulch, etc.
Pain management- chiropractor, physical therapy
Shopping assistance- load groceries onto check out line, carry groceries and load, unload and put away groceries, drive to store on bad days.
Symptoms Info >