Tag Archives: Lyme disease symptoms

My Chronic Lyme Disease Symptoms (Updated)

6 May

lyme_neuro_table

 

My Chronic Lyme Disease Symptoms (Updated)

I get asked a lot about how long I have had lyme and what are my symptoms. I don’t like answering this question because there are too many symptoms to list and I forget what most of them are because I have been dealing with them so long I think they are “normal”. Below is a list I posted a couple years ago of a good majority of my symptoms from lyme and co’s but I know there are many symptoms missing.

There are times when other lymies who have one or two symptoms will ask me “why can’t you work, I can”  as if they think lyme is curable and only has a few symptoms but they have no idea how much worse lyme can get if untreated your whole life or once it is stage 3. This disease is a living hell and it is different for every person so it is hard to compare or give advice to others when we all have different battles with the same disease.

 

My daily chronic lyme disease symptoms:

**My pain from the bottom of my feet to the top of my head is daily (24/7) and severe (pain scale 10++) but most of my pain is caused from other illnesses or medical issues plus the lyme and co’s. Here’s an older list from last year. Some may repeat sorry. I know I left out many symptoms since there are 100′s but of course I am struggling to remember them all. Some of these may not even be symptoms but illnesses causing them.

 

Head, Face, Neck

  • Pressure in head (sometimes meningitis)
  • Headaches, mild to severe almost daily
  • Migraines up to 7 times per month (i’m lucky)
  • Twitching of facial muscles
  • Facial flushing
  • Stiff or painful neck (most of my pain starts here and radiates down)
  • Cracking in neck, herniated discs & cysts in spine caused by lyme
  • Sore throat, strep throat, hoarseness, runny nose, dry nose
  • Mouth sores, dry mouth, swollen tongue (rare)

Eyes/Vision

  • Double or blurry vision
  • Increased floating spots or floaters (bugs)
  • Pain in eyes, or swelling around eyes
  • Oversensitivity to light (daily)
  • Flashing lights/Peripheral waves/phantom images in corner of eyes
  • Sensitive to movement such as a movie will get me dizzy/nausea
  • Eyes burn or hurt where I can’t see phone screen or tv
  • I still have 20/18 vision somehow

Ears/Hearing

  • Decreased hearing in one or both ears, plugged ears
  • Buzzing in ears
  • Pain in ears, oversensitivity to sound
  • Loud Ringing in both ears
  • Sound of blood rushing in head

Digestive and Excretory Systems

  • Diarrhea (IBS)
  • Constipation (sometimes severe TMI)
  • Vomiting after I eat (used to be daily until I started mmj)
  • Irritable bladder (trouble starting, stopping) or Interstitial cystitis
  • Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
  • Gastroparesis (illness not symptom but may be cause of some of these)
  • Stomach cramps/pain
  • Leaky Gut
  • Had C-Diff and a severe case of Candida

Musculoskeletal System

  • Severe bone pain, joint pain or swelling (bone pain is one of the worst for me)
  • Stiffness of all joints, back, neck…
  • Severe muscle pain or cramps
  • Twitching and spasms all over
  • Unexplained bruising
  • Charlie horse in muscles

Respiratory and Circulatory Systems

  • Shortness of breath, air hunger, cough, wheezing
  • Chest pain or rib soreness
  • Night sweats or unexplained chills
  • Heart palpitations or extra beats
  • Tachycardia, bradycardia (rarely) POTS
  • Stinging in lungs after sneeze or cough
  • Low oxygen (have O2 machine)

Neurologic System

  • Tremors (since I was a kid) or sometimes severe shaking
  • Burning or stabbing sensations in the body
  • Nerve pain (mostly severe each day)
  • Weakness, peripheral neuropathy or partial paralysis
  • Numbness in body, tingling, pinpricks
  • Poor balance, dizziness tippy, difficulty walking
  • Increased motion sickness
  • Lightheaded, wooziness

Psychological well-being

  • Irritability
  • Unusual depression
  • Disorientation (feeling lost)
  • Feeling as if you are losing your mind
  • Over-emotional reactions, crying easily
  • Never enough sleep or insomnia
  • Difficulty falling or staying asleep
  • Panic attacks, anxiety

Mental Capability

  • Memory loss (very bad short and long term loss)
  • Confusion, difficulty thinking
  • Difficulty with concentration or reading
  • Loss of words or forgetting words
  • Dyslexia
  • Going to the wrong place
  • Speech difficulty (slurred or slow)
  • Stammering speech, stuttering
  • Forgetting how to perform simple tasks

Reproduction and Sexuality

  • Loss of sex drive

General Well-being

  • Malaise
  • Extremely sensitive to cold and heat in body and mouth (eating food)
  • Neck glands cause shocking pains
  • Phantom smells
  • Extreme fatigue
  • Unexplained weight gain/loss
  • Swollen neck glands/lymph nodes
  • Unexplained fevers (high or low grade)
  • Early on, experienced a “flu-like” illness, after which you have not since felt well.
  • Low temperature
  • Unable to walk
  • Arthritis flares and my bones get stiff or hard to move/flex
  • Out of body experiences
  • Exhaustion daily (never a day with energy in last  5 years)
  • Hot flashes
  • Chills
  • Sensitive to the sun (makes me feel sicker)
  • Sugar makes me feel worse
  • Hands hurt so bad I can no longer write with a pen or draw
  • Feeling like each day I am dying
  • Literally feel like I am 90 years old
  • Primary Immunodeficiency (no immune system)
  • Haven’t driven a car in 4 years due to symptoms
  • And many more I can’t remember……

 

If you name a lyme disease symptom I most likely have it. I just don’t have the genital pain like I see listed on lyme disease symptoms checker at my LLMD. I usually check mark every box on the symptoms sheet at the doctors (those who see an LLMD know the long symptoms list we have to fill out each time. I rarely leave the house usually only to get a prescription with my mom or go to a doctor appt. I have been bed ridden but now I am able to walk to the living room and lay in my chair or walk around the house. I lost the ability to walk and was in a wheelchair but I will not let Lyme beat me! I am planning a vacation so I hope to get out for the first time in years.

As for me I have had lyme basically my whole life and always thought everyone had the same pains and weird things going on in the body as I did. I didn’t start to get worse until maybe my teens and when I was 19-21 that is when everything started to snowball and get worse. Started with bad knees, arthritis, spinal stenosis, nearly died from elderly pneumonia and so on. I worked and went to college until I finally collapsed and could no longer keep up with the world 5 years ago when I became officially disabled. So if you have only a few symptoms and think it won’t get any worse it most certainly can. So treat your lyme as much as you can and as early as possible for a better chance of remission.

 

This all sounds depressing but we will all get through this and we will not let our illnesses define who we are. Never give up and never take your life or health for granted because you never know what can happen. Stay strong, love life and fight on!

 

 

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Treatment Update – 1 Year And 4 Months Later

6 Jul

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Treatment Update – Going On Year 2

I was going to wait until I was a year and a half into Lyme treatment before I posted an update but I can pretty much tell it will be the same as today. I wish I had better news but I don’t. At my last visit with the LLMD we established that not much has improved since I first began treatment in March, 2011. I was on meds for Fibromyalgia a year before in 2010 and none of those meds helped either.

Since March of 2011 I now have even more symptoms then then since my first visit. I think the only symptom that has progressed or more like calmed down is my tremors. I was throwing, dropping and having uncontrollable jerks in my hands when holding items. I also would shake bad in my whole arms, hands and fingers. It was tough to eat soup or use a study hand for anything that needed one.

I wouldn’t say my LLMD is doing a poor job because I do get symptoms/medical issues and what he prescribes me does make them go away but just not for good. One example is my mouth sores and chronic strep throat. I was having what felt like razor blades in my throat and sores in my mouth so it was difficult to eat. I took what was recommended by my LLMD and so far they haven’t been back but they would come and go frequently.

My quality of life is still very poor and I am still unable to leave the house, literally. I can still walk so that is good but I walk from my room to my chair or to the bathroom mostly. It seems like my insomnia and CFS like to battle each other. One week I get 30 minutes of sleep on average and the next week I cannot wake up. I will be so exhausted or feeling so bad I can’t talk, move or sit up.

I have been on a lot of meds and different protocols and tried almost every recommendation given to me by others. If I hear how someone feels almost normal and is back having fun I will try what they used. They problem is nothing is working so far and it gets very expensive for no progress.

I still have hope and I know this is a long tough road. I was told from the begging of treatment this could be 5-8 years of treatment before I feel any relief but I know some who feel better year 1 or 2. I just think every case is different and I have had these bugs so long so they can’t be killed so easy. I have cyst and biofilm form and I need to knock down there force fields and kick butt.

I will continue to use treatment as long as I can since I figure doing nothing will only let these bugs continue to ruin my body and mind. I am taking a small break from the aggressive/hardcore antibiotic treatment and 50 pills a day and doing an herbal treatment for now with only one antibiotic. So far no changes but there always hope.

On a positive and lighter note I have seen a few Facebook friends who are feeling much better. They may be in remission. The ones who are feeling better though have only had Lyme for a short time and were treated right away. But that is good to see and I am happy to see any Lymie have success and keeps me fighting.

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Improvements:

  • Tremors calmed down
  • 100’s of small parasite zits on forehead cleared up after 3 years of having them
  • IBS is much better being on 2 probiotic
  • Ankle pain went from a 10 down to a 6 on the pain scale
  • Cold sores, mouth sores and strep throat have calmed down
  • Appetite is somewhat back
  • Taste buds can taste again but not 100%
  • Oral candida (white tongue) going away
  • Ringing in ears not as loud (daily ringing, crickets and buzzing)
  • Slightly less head pressure
  • Craving for food is rare but I do on occasion crave Mexican or Onion Rings lol
  • Passing out has ceased for now (yay!)
  • Seizures have calmed

New And Worse Symptoms:

  • Herpes, candida and yeast – NEW (genital area skin is peeling – gross help me!)
  • CFS, Exhaustion, Fatigue, Lethargy
  • Memory loss is really bad both long-term and short-term
  • Depression (from being single and lonely and from Lyme)
  • Not excitement or butterflies…etc – due to depression most likely
  • No strength and it’s even hard to open a cap on a drink
  • Headaches and migraines are more frequent
  • Nausea is more frequent with dry heaves and vomiting
  • Car ride to LLMD makes me sleep for 3 days or get extra exhausted
  • Neck and arms still numb, tingly, and loss of feeling. Neck is stiff and 10 on pain scale
  • Sensitive teeth to hot and cold
  • Cuts in gums – NEW
  • Seeing bright orange spots by the hundreds when I look outside at he sky
  • Turrets in my neck is worse and shakes like a bobble head
  • Cognitive issues
  • Plus more but I forget ……….

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Some Of My Symptoms – From Head To Toe

1 Jul

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My Daily Symptoms From Head To Toe:

A lot of people ask me about my symptoms. I can say after reading the long check list at my doctor’s office and reading all the symptoms associated with Lyme and co’s from numerous web sites that I have 98% of all the symptoms. The only symptoms I don’t have are breast pain, lactation and menstrual symptoms for obvious reasons (I’m a male).

I will start from head to toe and try to remember and list my symptoms. Almost all of these are daily except the ones that aren’t say “often”:

Head:

Brain pressure

Headaches

Migraines (often)

Ears ringing, buzzing, popping

Sensitive to noises/sound

Facial pain

Sensitive teeth to hot and cold

Extremely sensitive mouth, can’t eat anything unless it is warm or room temp (hot and normal food temp will burn my skin in my mouth and cold I cannot handle)

Cuts in gums

Swollen glands under jaw

Shocking pain for each new bite of food

Eyes hurt

Floaters in eyes

Blurry vision/double vision

Dry eyes

Sensitive to movement

Cysts form on face like zits

Parasites on forehead like 100’s of zits

Dizziness

Dry nose and loss of smell

Loss of taste (often)

Herpes/Cold sores on mouth

Sores in mouth and on tongue

Strep throat (often)

Some hair loss

Tippy feeling (my body sways all four directions)

Nightmares

Depression

Anxiety

Sensitive to smell

Insomnia

CFS

Seeing spots (bright orange and black)

Passing out

Feeling like I’m drunk or high on drugs

Cognitive issues:

All the normal cognitive issues

Long-term memory loss (lost most childhood, teen and 20’s and 30’s memories)

Short-term memory loss (usually after 24 hours I forget)

Dyslexia (from Lyme or Fibro)

Brain fog

Loss for words

Can’t read

Hard to write

Hard to speak (often)

Neck:

Swollen neck lymph glands

2 herniated discs (caused by Lyme)

Spinal stenosis

Burning skin, numb skin, tingling skin

Chronic pain

Neuropthy

Radiculopathy

Stiff neck

Sore bones and muscles

Pops, Cracks of neck

Turrets twitches (bobble head)

Shoulders and arms:

Some of my worst chronic pain in muscles and bones (Fibro and Lyme)

Stiff shoulders

Limited mobility of limbs

Numb, burning, tingling skin

Sensitive to touch

Chest and Ribs:

Pain and soreness in ribs

Muscle pain in chest/breast area

Heart skips/palps

Shortness of breath/ air hunger

Back:

This is where most of the worst pain is (Fibro and Lyme)

Old surgery scars are always inflamed and sensitive

Stiff back

Back pain

Pain down spine

Muscle and bone pain

Bartonella zits on back

Bartonella stretch marks

Stomach:

IBS

Stomach pain

Sensitive belly button

Stretch marks from Bartonella

Vomiting

Nausea

Waist down to toes:

Chronic knee pain is the worst of my pains

Hard to bend legs

Hard to walk

Sciatic nerve pain

Ankles always hurt

Bottom of feet sore

Swelling

Redness in skin (feet, thighs)

Pops, cracks, locking of knees

Chronic hip pain

Pain in hip if I lay on my side even on cushions from the pressure

Muscle pain

Paraesthesia (tingling, numbness, limbs fall asleep)

Sea legs

RLS

Very sensitive knees (with reflex hammer)

Knees freeze up and stop working in very cold temperatures

Feet are very sensitive to heat like hot pavement or wearing flip flops hurts

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Here’s an older list from last year. Some may repeat. I know I left out many symptoms since there are 100’s but of course I am struggling to remember them all. I will try to add as I go.

My daily Lyme disease symptoms (some more sever than others):

 

Head, Face, Neck

 

  • Pressure in head
  • Headache, mild or severe
  • Migraines
  • Twitching of facial or other muscles
  • Facial flushing
  • Stiff or painful neck
  • Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

Eyes/Vision

  • Double or blurry vision
  • Increased floating spots
  • Pain in eyes, or swelling around eyes
  • Oversensitivity to light (daily)
  • Flashing lights/Peripheral waves/phantom images in corner of eyes

Ears/Hearing

  • Decreased hearing in one or both ears, plugged ears
  • Buzzing in ears
  • Pain in ears, oversensitivity to sounds
  • Ringing in one or both ears

Digestive and Excretory Systems

  • Diarrhea
  • Constipation
  • Irritable bladder (trouble starting, stopping) or Interstitial cystitis
  • Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System

  • Bone pain, joint pain or swelling, carpal tunnel syndrome
  • Stiffness of joints, back, neck, tennis elbow
  • Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

  • Shortness of breath, can’t get full/satisfying breath, cough
  • Chest pain or rib soreness
  • Night sweats or unexplained chills
  • Heart palpitations or extra beats
  • Endocarditis, Heart blockage

Neurologic System

  • Tremors or unexplained shaking
  • Burning or stabbing sensations in the body
  • Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
  • Pressure in the head
  • Numbness in body, tingling, pinpricks
  • Poor balance, dizziness, difficulty walking
  • Increased motion sickness
  • Lightheadedness, wooziness

Psychological well-being

  • Irritability
  • Unusual depression
  • Disorientation (getting or feeling lost)
  • Feeling as if you are losing your mind
  • Over-emotional reactions, crying easily
  • Never enough sleep or insomnia
  • Difficulty falling or staying asleep
  • Panic attacks, anxiety

Mental Capability

  • Memory loss (short or long term)
  • Confusion, difficulty in thinking
  • Difficulty with concentration or reading
  • Going to the wrong place
  • Speech difficulty (slurred or slow)
  • Stammering speech, stuttering
  • Forgetting how to perform simple tasks

Reproduction and Sexuality

  • Loss of sex drive

General Well-being

  • Malaise
  • Extremely sensitive to cold and heat in body and mouth
  • Neck glands cause shocking pains
  • Phantom smells
  • Extreme fatigue
  • Unexplained weight gain, loss
  • Swollen neck glands/lymph nodes
  • Unexplained fevers (high or low grade)
  • Symptoms seem to change, come and go
  • Pain migrates (moves) to different body parts
  • Early on, experienced a “flu-like” illness, after which you have not since felt well.
  • Low body temperature

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Here is my Fibromyalgia symptoms list before being diagnosed also with Lyme and co’s. I had all 15 pressure points and 3 specialists and a family doctor diagnosed me with Fibromyalgia but knew I had more. As you can see the symptoms are the same as Lyme but there are differences such as Fibro Flares that can occur more frequently than Lyme flares and hurt more of just the muscles where Lyme and co’s is muscle and bone and then there are the pressure points.

My Fibromyalgia Symptoms (Daily – Pain scale 8-10):

 

  • Widespread Pain (All known pressure points)
  • Morning Stiffness
  • Fatigue, lethargy
  • Vision Problems
  • Nausea
  • Sleep Disorders
  • Dizziness
  • Chronic Headaches
  • Cold and Flu like Symptoms
  • Joint, bone and muscle pain and stiffness
  • “Fibrofog”: Cognitive or Memory Impairment
  • Skin Complaints
  • Chest Symptoms (tightness in chest, chest pain)
  • Anxiety, depression, panic attacks
  • Muscle Twitches and Weakness
  • Memory Loss
  • Back/spine area in sever pain daily
  • Hands, feet and legs fall asleep or go numb
  • Feeling of death
  • Can’t walk due to sever pain in legs, knee joints and shaking legs
  • Cannot write with a pen on paper due to carpal tunnel and hands in pain or cramping up
  • Hard to speak at times
  • IBS
  • Sensitivity to noise, bright lights, medications, certain foods, heat and especially cold or air conditioning
  • Reduced tolerance for exercise and muscle pain after exercise
  • A feeling of swelling (without actual swelling) in the hands and feet
  • Weakness in the limbs
  • Heavy feeling throughout body and in my limbs as if my arms weigh 50lbs each.

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Here is a symptoms list I compiled over the years. May be duplicates:

Lyme Disease Symptoms List

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1. Unexplained fevers, sweats, chills, or flushing

2. Unexplained weight change–loss or gain

3. Fatigue, tiredness, poor stamina

4. Unexplained hair loss

5. Swollen glands: list areas____

6. Sore throat

7. Testicular pain/pelvic pain

8. Unexplained menstrual irregularity

9. Unexplained milk production: breast pain

10.Irritable bladder or bladder dysfunction

11.Sexual dysfunction or loss of libido

12.Upset stomach

13.Change in bowel function-constipation, diarrhea

14.Chest pain or rib soreness

15.Shortness of breath, cough

16.Heart palpitations, pulse skips, heart block

17.Any history of a heart murmur or valve prolapse?

18.Joint pain or swelling: list joints_____________

19.Stiffness of the joints, neck, or back

20.Muscle pain or cramps

21.Twitching of the face or other muscles

22.Headache

23.Neck creeks and cracks, neck stiffness, neck pain

24.Tingling, numbness, burning or stabbing sensations, shooting pains

25.Facial paralysis (Bell’s Palsy)

26.Eyes/Vision: double, blurry, increased floaters, light sensitivity

27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity

28.lncreased motion sickness, vertigo, poor balance

29.Lightheadedness, wooziness

30.Tremor

31.Confusion, difficulty in thinking

32.Diffculty with concentration, reading

33.Forgetfuiness, poor short term memory

34.Disorientation: getting lost, going to wrong places

35.Difficulty with speech or writing

36.Mood swings, irritability, depression

37.Disturbed sleep-too much, too little, early awakening

38.Exaggerated symptoms or worse hangover from alcohol

The following signs/symptoms may be present in those infected with Babesiosis:

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Fatigue

Arthralgias

Myalgia

Drenching sweats

Headaches

Emotional lability

Depression

Dark urine

Splenomegaly

Dizziness

Nausea and vomiting

Cough

Dyspnea

Fever

Chills

Hepatosplenomegaly

Jaundice

Malaise

Shortness of breath

Bleeding tendencies, bruising

Thrombocytopenia

Hemoglobinuria

Hyperesthesia

Pulmonary edema

Encephalopathy

Low to normal range leukocyte counts

Possible elevated levels of dehydrogenase, bilirubin,

transaminase*

Anorexia

Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection.

An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.

BARTONELLA SYMPTOMS

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GENERAL: Fatigue, Restlessness, Combative behavior, Myalgias, Malaise, Liver and/or Spleen

involvement, Abdominal pain, Infectious Mononucleosis-like Syndrome, Granulomatous Hepatitis

BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients

with Bartonella.

Note: Approximately 50 percent of patients who develop Encephalopathy can be affected

by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.

RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may

develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the

head, and neck. The papules may appear on the skin or mucous membranes.

Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.

EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch

Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud’s Oculoglandular Syndrome,

and Papilledema.

BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis,

Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.

HEART: Endocarditis, Cardiomegaly.

BABESIA SYMPTOMS: (these are just the ones I have but there are a few more)

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generalized weakness
intermittent fever (low grade)
fatigue
insomnia
gastrointestinal (GI) symptoms like nausea, vomiting, diarrhea, and belly pain
headaches
muscle pain
joint pain
unusual weight gain
decreased appetite
sensitivity to light, touch, sound, or smells
shortness of breath – air hunger
night sweats and hot flashes
chills
arm and leg pain
swollen spleen
dark urine

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You Think You May Have Lyme Disease – Now What Do You Do?

12 Apr

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Cognitive Problems

5 Apr

Cognitive Problems

I love movies and television shows. I watch my weekly shows such as CSI, NCIS and many others that one has to follow to get the story and find out who the murderer is. I used to follow along and pick up on clues with no problem. I also love movies that can get complex but I would get the story and love it.

Recently I watched ‘Inception”. A few years ago that movie would have blew my mind and I would have loved it. Watching this movie with Lyme… I was lost and just could not follow along. I am having trouble following my weekly shows and it’s almost like I am just staring at the TV. My dad will ask “what did he just say” and my reply is “I have no idea” and my dad says “aren’t you watching the show” to which I reply “yeah but I can’t follow along with their conversation”.

I used to love complexity but now with Lyme I like simplicity. I have books sitting on my dresser waiting for me to read them. I was in the middle of a ton of books before Lyme and I would read an 800 page book in months since I was at work most of the time. Now it takes me months to read a few pages it seems. I find big words hard to process and I find myself reading the same sentences over and over trying to get what I am reading. I like to read more than one book at a time so I have 6 books going right now but I just don’t feel well enough to read them.

I am starting to feel additional pain from a Fibro flare up or Lyme flare coming so this is all I have for now. I can’t believe I wrote this much. I hope it makes sense and I hope you do not mind the misspellings or poor grammar. 🙂

From Managing a Store to Managing my Medication

5 Apr

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