Part 3- Symptom List- Chronic Patient


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.

Last Updated- February 2019

Lucy Barnes