I HAVE BEEN DIAGNOSED WITH BOTH BUT I CAN"T SEEM TO FIND...

Discussion in 'Fibromyalgia Main Forum' started by HppeandMe, Feb 6, 2006.

  1. HppeandMe

    HppeandMe New Member

    Hi Friends-

    I have been diagnosed with Lyme disease and now I am doing IV treatment. I was previously diagnosed as well with CFS. It seems to me that they both have the same symptoms. It is bothering me because I don't know which is which symptom? Other than the bull's eye's rash (which I didn't have) what are the differences. I have even searched the search engines and didn't have much luck.

    I hope someone can help!
    Hope
  2. laspis1

    laspis1 New Member

    I do not think that there is a clear line you can draw between the two. Lyme probably caused your CFS. Lyme has a lo of neurological symptoms, causes also muscle and joint pain. Personally I am still in the process of trying to figure out if I have Lyme myself. I know I am not helping, but I think that if you know you have Lyme you need to take care and treat that than you will be able to see what the leftovers are and deal with those.
  3. Shannonsparkles

    Shannonsparkles New Member

    Hope, I'm glad that you have your diagnosis of lyme disease and are getting treatment. Most people who suffer with lyme and are never tested, never treated. The disease just gets written off as something else. So I am relieved that you know about the problem. And that you are getting help for it!

    Below, I have pasted in the Master Symptom List for lyme, CFS, FM, and CMP. And I am sorry to say, it's the same list! The symptoms you get with these conditions overlap terribly. It's not surprising, because many of us with CFS/FM have these chronic infestions going on as part of our disease - me included.

    It will help you to have the lists though. It helps you to notice more what you are feeling (and that it's not in your head), and it's useful to have with your doctors because you can circle the symptoms you have.

    With this list lumped together as it is, I wonder about your question too. Can anyone tell us if there ARE differences between the symptoms of a CFS person who doesn't have lyme and a strictly lyme person?

    Don't know if there would be much difference even then though... CFS-ers tend to have a lot of other infections too - herpes virus, EBV, pneumonia virus, mycoplasma...



    Master Symptom List for CFS, FMS, CMP & Lyme Disease

    Note on Symptoms: many of these are symptoms common to other diseases. Getting a proper diagnosis for CFS, FM, CMP, Lyme, and other tick-borne diseases is as much ruling out other diseases as it is looking at the clues in dozens of tests and the actual physical exam.

    By Melissa Kaplan, The Carousel Network, May/June 2003



    AUTONOMIC NERVOUS SYSTEM / ENDOCRINE / IMMUNE / HORMONE

    Abnormal sensitivity to hot or cold
    Allergies (nasal, other; new, increased or worsening)
    Canker sores (frequent)
    Chills and/or shakes when hungry (may occur instead of feeling hungry)
    Cold hands and feet
    Feeling hot or cold often
    Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), chills, extreme fatigue after minimal exertion
    Hair loss (alopecia)
    Herpes simplex or shingles rash
    Increased susceptibility to infections
    Low-grade fevers
    Low blood pressure (below 110/70)
    Low body temperature (below 97.5)
    Lymph nodes painful, swollen (in neck; under arms)
    Night sweats (not related to menopause or fever)
    Orthostatic Intolerance (neurally mediated hypotension)
    Reactive hypoglycemia and insulin resistance
    Thirst, increased
    Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature
    and body temperature; low body temperature (below 97.6 F / 36.4 C)
    Thyroid inflammation (acute thyroiditis; hypothyroidism; Hashimoto's thyroiditis)


    CARDIOPULMONARY / ESPIRATORY / CIRCULATORY

    Cardiac abnormalities (mitral valve prolapse; myocarditis; tachycardia; palpitations;
    dysrhythmia)
    Cough
    Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
    Heart attack
    Heart palpitations
    Heart pounds so hard it shakes body, bed
    Pulse skips
    Serious rhythm disturbances of heart
    Sighing, frequent, not related to mental/emotional state
    Stroke
    Vasculitis


    CENTRAL NERVOUS SYSTEM / NEUROLOGIAL / NEUROPATHIC / OTOLOGIC

    Abnormal CAT, MRI, and/or SPECT scans
    Alcohol intolerance
    Aseptic meningitis
    "Brain fog"; inability to think clearly (often referred to as “fibro fog”)
    Difficulty moving tongue to speak
    Diminished or absent reflexes
    Fainting or blackouts; feeling like you might faint
    Headaches (frequent, severe, recurring)
    Hearing fluctuations (sounds fade then return)
    Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV)
    Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)
    Libido (decreased)
    Light-headedness, feeling spaced-out
    Migraine headaches
    Muscle twitching
    Noise intolerance
    Paralysis or severe weakness of limb
    Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
    Photosensitivity
    Radiculitis
    Seizures; seizure-like episodes
    Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)
    Severe muscle weakness
    Syncope (fainting)
    Tinnitus (ringing/noises in one or both ears)
    Touch or weight of clothing on or against body causes discomfort or pain
    Tremors, trembling


    COGNITIVE FUNCTION

    Becoming lost in familiar locations when driving
    Difficulty with simple calculations (e.g., balancing checkbook)
    Difficulty expressing ideas in words
    Difficulty moving your mouth to speak
    Difficulty making decisions
    Difficulty following directions while driving
    Difficulty remembering names of objects
    Difficulty remembering names of people
    Difficulty recognizing faces
    Difficulty following simple written instructions
    Difficulty following complicated written instructions
    Difficulty following simple oral (spoken) instructions
    Difficulty following complicated oral (spoken) instructions
    Difficulty integrating information (putting ideas together to form a complete picture or concept)
    Difficulty putting tasks or things in proper sequence
    Difficulty paying attention
    Difficulty following a conversation when background noise is present
    Difficulty making and/or retrieving memories (long/short-term memory deficits)
    Difficulty understanding what you read
    Easily distracted during a task
    Feeling too disoriented to drive
    Forgetting how to do routine things
    Forgetting the use of common objects (such as, what to do with the shampoo when you are standing in the shower)
    Forgetting how to get to familiar places
    Impaired ability to concentrate
    Losing your train of thought in the middle of a sentence
    Losing track in the middle of a task (remembering what to do next)
    Poor judgment
    Switching left and right
    Slowed and/or slurred speech
    Stuttering; stammering
    Transposition (reversal) of numbers, words and/or letters when you speak and/or speak
    Word-finding difficulty
    Using the wrong word


    DIGESTIVE / HEPATIC

    Bloating; intestinal gas
    Decreased appetite
    Digestive chemicals (acid, enzymes) reduced or absent
    Esophageal reflux; heartburn
    Frequent constipation
    Frequent diarrhea
    Food cravings (especially carbohydrates, sweets)
    Food/Substance intolerance
    IBS
    Liver function impaired; mild abnormalities
    Increased appetite
    Nausea
    Spleen tender or enlarged
    Stomach ache, cramps
    Vomiting
    Weight gain or loss


    EQUILIBRIUM /PERCEPTION

    Bite your cheeks or tongue frequently
    Bump into things frequently
    Difficulty discriminating printed matter despite proper vision correction
    Distances (difficulty judging when driving; when putting things down on surfaces)
    Dizziness or vertigo
    Dropping things frequently
    Dysequilibrium (balance problems)
    Impaired coordination
    Loss of balance when standing with eyes closed
    Perception (not quite seeing what you are looking at)
    Some patterns (stripes, checks) cause dizziness
    Spatial disorientation
    Staggering gait (clumsy walking)
    Words on printed page appear to jump off page or disappear when staring at them


    EYES / VISION

    Acuity changes not related to prescription changes
    Blind spots
    Blurred vision
    Conjunctivitis
    Diminished visual acuity in absence of actual vision change
    Drooping eyelid
    Double vision
    Eye pain
    Flashes of light perceived peripherally
    Optic neuritis or atrophy
    Oscillopsia (image jiggles)
    Prescription changes more frequently
    Pressure sensation behind eyes
    Red and/or tearing eyes
    Retinal damage
    Slowed accommodation (switching focus from far to near, near to far)
    Spots or floaters not related to migraines
    Swelling around eyes
    Uveitis and/or iritis
    Wandering or lazy eye


    HEAD / NECK / MOUTH
    Bell's palsy (facial paralysis, one or both sides)
    Bruxism (grinding/clenching teeth)
    Canker sores
    Dizziness when you turn your head or move
    Dry chronic cough
    Dry eyes, nose and mouth (sicca syndrome)
    Pain in ears, palate, gums
    Periodontal disease
    Prickling pain along skin of jaw
    Problems swallowing, chewing
    Runny nose in absence of cold, allergies
    Sinus infections
    Sore spot on the top of your head
    Temperomandibular Joint Syndrome (TMJ)
    Unexplained toothaches
    Xerostoma (dry mouth)


    MUSCULOSKELETAL

    Arthritic pain that migrates from joint to joint
    Carpal tunnel syndrome
    Frozen shoulder
    Intermittent joint swelling
    Joint aches (arthralgia)
    Joint pain, without redness or swelling
    Loss of tone
    "Lumpy, bumpy" long muscles
    Morning stiffness
    Muscle aches (myalgia)
    Muscle pain, stiffness, weakness
    Pyriform muscle syndrome
    Reduced range of motion
    Stiff neck
    Writing causes pain in hand, arm shoulder


    PAIN SYMPTOMS

    Abdominal pain
    Chest pain
    Debilitating generalized pain (arms, neck, shoulders, hips, legs, etc.)
    Muscle pain (all over your body)
    Painful tender points (FMS: 11 out of 18 tender points)
    Shooting or stabbing pains

    PSYCHOLOGICAL SYMPTOMS / MOOD / EMOTIONS

    Abrupt/Unpredictable mood swings
    Anxiety or fear for no obvious reason
    Appetite increase/decrease
    Decreased self-esteem
    Depression or depressed mood
    Feeling helpless and/or hopeless
    Feeling worthless
    Frequent crying for no reason
    Helpless/Hopeless feelings
    Inability to enjoy previously enjoyed activities
    Irritability; over-reaction
    New phobias/irrational fears
    Panic attacks
    Personality changes (labile, irritable, anxious, confused, forgetful)
    Phobias (irrational fears)
    Rage attacks; anger outbursts for little or no reason
    Suicidal thoughts or suicide attempts


    SENSITIVITIES

    Acute or abnormal reactions to medications
    Alteration in taste, smell, and/or hearing
    Chemicals (alcohol, medications, perfumes, smells; lower tolerance for)
    Food sensitivities
    Increased perception of and sensitivity to noise
    Light sensitivity
    Sensitivity to odors (able to detect and/or react in concentrations far lower than before and that healthy people cannot smell)


    SKIN / NAILS

    Abnormal scarring
    Acrodermatitis Chronica Atrophician
    Blotchy or mottled skin
    Bruise easily
    Bruises may take longer to appear, and/or longer to fade
    Bull's-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)
    Dermographia (minor scratch pressure on skin leaves vivid red welts)
    Dry, itchy skin
    Easily scar
    Eczema or psoriasis
    Fragile nails
    Frequent skin irritations
    Lymphadenosis benigna cutis
    Nails that curve under or downward
    Overgrowing connective tissue (ingrown hair, adhesions, thickened/split cuticles, cysts, fibroids)
    Painful skin (abnormal/excessive pain when scratched or rubbed)
    "Paper" skin (feels fragile, tissue-thin when rubbed)
    Rashes on body, face
    Vertical ridges or beads in nails


    SLEEP SYMPTOMS

    Abnormal brain activity in stage 4 sleep
    Altered sleep/wake patterns (alert/energetic late at night, sleepy during day
    Difficulty falling asleep
    Difficulty staying asleep (frequent and/or prolonged awakenings)
    Hypersomnia (excessive sleeping)
    Myclonus (restless leg syndrome; occasional jerking of entire body)
    Nightmares (frequent, extremely vivid and/or disturbing)
    Unrefreshing/Non-restorative sleep


    UROGENITAL / REPRODUCTIVE

    Decreased libido
    Discharge from breast or galactorrhea
    Endometriosis
    Frequent urination
    Incontinence
    Impotence
    Infant: premature; low birth weight; low muscle tone; failure to thrive
    Interstitial cystitis
    Miscarriage or stillbirth
    Painful intercourse
    Painful urination or bladder
    Pelvic and/or rectal pain
    Prostate pain
    Swollen testicles
    Other symptoms worsen before start of menstruation
    Worsening of PMS


    OTHER

    Abnormal or other changes in sweating
    Activity level reduced to less than 50% of pre-onset level
    Burning sensation (internal and/or external)
    Cancer
    Changed voice
    Changes in sweat odor/body odor
    Delayed reaction to over activity/exertion (onset 24-48 hours after exertion)
    Electromagnetic (EM) sensitivity (electrical storms, full moon, affect function of electrical devices)
    Fatigue, prolonged, disabling, made worse by exertion or stress
    Fibrocystic breasts
    "Galloping" cholesterol and triglycerides
    Hair loss (not related to age, hormones, diet, medication)
    Hands hurt excessively when put in cold water
    Handwriting changes, altering signature and/or other writing
    Hoarseness
    Painful, weak grasp that gives way/lets go
    Periods of concentrated thinking causes physical and mental exhaustion, increases pain
    Sore throat
    Swelling/Idiopathic edema (fluid retention syndrome)
    Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel
    Symptoms change focus from time to time, like infection is moving through the body
    Thickened mucus secretions (nose, bowel, vaginal)
    Thickened "sleep" around eyes in mornings
    Very attractive to biting flies and mosquitoes
    Weight changes (usually gain)


    COMMON CO-INFECTIONS AND DISORDERS

    Babesiosis
    Cytomegalovirus (CMV)
    Epstein-Barr virus (EBV)
    Ehrlichiosis
    Herpesvirus
    HHV6
    Iron deficiency
    Mercury or other metal toxicity
    Mycoplasma
    Systemic mold and/or mold sensitivities

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    LIST #2:


    HERE IS ANOTHER FIBRO CHECKLIST:


    GENERAL
    ____ Fatigue, made worse by physical exertion or stress
    ____ Activity level decreased to less than 50% of pre-illness activity level
    ____ Recurrent flu-like illness
    ____ Sore throat
    ____ Hoarseness
    ____ Tender or swollen lymph nodes (glands), especially in neck and underarms
    ____ Shortness of breath (air hunger) with little or no exertion
    ____ Frequent sighing
    ____ Tremor or trembling
    ____ Severe nasal allergies (new allergies or worsening of previous allergies)
    ____ Cough
    ____ Night sweats
    ____ Low-grade fevers
    ____ Feeling cold often
    ____ Feeling hot often
    ____ Cold extremities (hands and feet)
    ____ Low body temperature (below 97.6)
    ____ Low blood pressure (below 110/70)
    ____ Heart palpitations
    ____ Dryness of eyes and/or mouth
    ____ Increased thirst
    ____ Symptoms worsened by temperature changes
    ____ Symptoms worsened by air travel
    ____ Symptoms worsened by stress


    PAIN
    ____ Headache
    ____ Tender points or trigger points
    ____ Muscle pain
    ____ Muscle twitching
    ____ Muscle weakness
    ____ Paralysis or severe weakness of an arm or leg
    ____ Joint pain
    ____ TMJ syndrome
    ____ Chest pain


    GENERAL NEUROLOGICAL
    ____ Lightheadedness; feeling "spaced out"
    ____ Inability to think clearly ("brain fog")
    ____ Seizures
    ____ Seizure-like episodes
    ____ Syncope (fainting) or blackouts
    ____ Sensation that you might faint
    ____ Vertigo or dizziness
    ____ Numbness or tingling sensations
    ____ Tinnitus (ringing in one or both ears)
    ____ Photophobia (sensitivity to light)
    ____ Noise intolerance


    EQUILIBRIUM/PERCEPTION
    ____ Feeling spatially disoriented
    ____ Dysequilibrium (balance difficulty)
    ____ Staggering gait (clumsy walking; bumping into things)
    ____ Dropping things frequently
    ____ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
    ____ "Not quite seeing" what you are looking at



    SLEEP
    ____ Hypersomnia (excessive sleeping)
    ____ Sleep disturbance: unrefreshing or non-restorative sleep
    ____ Sleep disturbance: difficulty falling asleep
    ____ Sleep disturbance: difficulty staying asleep (frequent awakenings)
    ____ Sleep disturbance: vivid or disturbing dreams or nightmares
    ____ Altered sleep/wake schedule (alertness/energy best late at night)


    MOOD/EMOTIONS
    ____ Depressed mood
    ____ Suicidal thoughts
    ____ Suicide attempts
    ____ Feeling worthless
    ____ Frequent crying
    ____ Feeling helpless and/or hopeless
    ____ Inability to enjoy previously enjoyed activities
    ____ Increased appetite
    ____ Decreased appetite
    ____ Anxiety or fear when there is no obvious cause
    ____ Panic attacks
    ____ Irritability; overreaction
    ____ Rage attacks: anger outbursts with little or no cause
    ____ Abrupt, unpredictable mood swings
    ____ Phobias (irrational fears)
    ____ Personality changes


    EYES AND VISION
    ____ Eye pain
    ____ Changes in visual acuity (frequent changes in ability to see well)
    ____ Difficulty with accommodation (switching focus from one thing to another)
    ____ Blind spots in vision


    SENSITIVITIES
    ____ Sensitivities to medications (unable to tolerate "normal" dosage)
    ____ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
    ____ Sensitivities to foods
    ____ Alcohol intolerance
    ____ Alteration of taste, smell, and/or hearing


    UROGENITAL
    ____ Frequent urination
    ____ Painful urination or bladder pain
    ____ Prostate pain
    ____ Impotence
    ____ Endometriosis
    ____ Worsening of premenstrual syndrome (PMS)
    ____ Decreased libido (sex drive)


    GASTROINTESTINAL
    ____ Stomach ache; abdominal cramps
    ____ Nausea
    ____ Vomiting
    ____ Esophageal reflux (heartburn)
    ____ Frequent diarrhea
    ____ Frequent constipation
    ____ Bloating; intestinal gas
    ____ Decreased appetite
    ____ Increased appetite
    ____ Food cravings
    ____ Weight gain (____ lbs)
    ____ Weight loss (____ lbs)


    SKIN
    ____ Rashes or sores
    ____ Eczema or psoriasis


    OTHER
    ____ Hair loss
    ____ Mitral valve prolapse
    ____ Cancer
    ____ Dental problems
    ____ Periodontal (gum) disease
    ____ Aphthous ulcers (canker sores)


    COGNITIVE
    ____ Difficulty with simple calculations (e.g., balancing checkbook)
    ____ Word-finding difficulty
    ____ Using the wrong word
    ____ Difficulty expressing ideas in words
    ____ Difficulty moving your mouth to speak
    ____ Slowed speech
    ____ Stuttering; stammering
    ____ Impaired ability to concentrate
    ____ Easily distracted during a task
    ____ Difficulty paying attention
    ____ Difficulty following a conversation when background noise is present
    ____ Losing your train of thought in the middle of a sentence
    ____ Difficulty putting tasks or things in proper sequence
    ____ Losing track in the middle of a task (remembering what to do next)
    ____ Difficulty with short-term memory
    ____ Difficulty with long-term memory
    ____ Forgetting how to do routine things
    ____ Difficulty understanding what you read
    ____ Switching left and right
    ____ Transposition (reversal) of numbers, words and/or letters when you speak
    ____ Transposition (reversal) of numbers, words and/or letters when you write
    ____ Difficulty remembering names of objects
    ____ Difficulty remembering names of people
    ____ Difficulty recognizing faces
    ____ Difficulty following simple written instructions
    ____ Difficulty following complicated written instructions
    ____ Difficulty following simple oral (spoken) instructions
    ____ Difficulty following complicated oral (spoken) instructions
    ____ Poor judgment
    ____ Difficulty making decisions
    ____ Difficulty integrating information (putting ideas together to form a complete picture or concept)
    ____ Difficulty following directions while driving
    ____ Becoming lost in familiar locations when driving
    ____ Feeling too disoriented to drive

    [This Message was Edited on 02/16/2006]
  4. laspis1

    laspis1 New Member

    You are incredible, thanks for posting this.
  5. hopeful4

    hopeful4 New Member

    Hope,
    There is so much overlap it's just about indistinguishable. I was diagnosed w/CFIDS 6 years ago, and just recently uncovered the Lyme. I was one tender point away from an FM DX.

    How is your treatment progressing? How is the IV ABX going for you? I'm so glad that you're seeing an LLMD. Have you visited lymenet dot org? Some of us from here are also over there.

    Take care and best wishes with your treatment.
    Hopeful4
  6. ephemera

    ephemera New Member

    Last week I got back surprising blood test results of positive for Epstein Barr Virus & Lyme (both of which my rheumie said oh no, you don't have those before he ordered the tests). Fortunately the Western Blot & 3 step tests ruled out current problems for both. I know my autoimmune is compromised, but at least I think I savely escaped a diagnosis...

    Also got 18/18 on my FM diagnosis on top of CFS. Bummer...

    And, I got it all in writing which I'm sharing with other docs.

    When I told my acupunturist today about the DBV & Lyme, she said Not Good. My feelings exactly.
  7. Shannonsparkles

    Shannonsparkles New Member

    Thanks for the 'incredible'. I'll tuck it away in my "nice things said for a rainy day" file. ;)

    Really though, it's in incredible board. That's where I got the symptom list in the first place!
    (((grinning))) Shannon
  8. HppeandMe

    HppeandMe New Member

    Thanks that is quite a list but somewhat scares me because I don't know if I will ever be right again. I am just trying to keep my head up!

    Thanks,
    Hope
  9. HppeandMe

    HppeandMe New Member

    Hopeful4 it is a bit scary but going along ok so far. I am afraid because they keep checking my liver and the results seem to bothering them. Last week they actually gave the wrong doage of Rocephin so this is the 1st week that I will receive the right dose of Rocephin. I hope it makes me feel better. When I have a chance I am going to ask the community what to take if you are having liver issues from medication.

    Thanks again!
  10. Cromwell

    Cromwell New Member

    Anne here. Pleased that you started and are OK on the IV treatment.

    Please do not be scaring yourself. Just concentrate for now on this IV treatment and getting the Lyme under control. Take it from there, as your symptoms may diminish so you will know if you have FM/CFS on top at that point. You have a lot to be stressed about, so just copy the great list, and put it away till after your IV ends. OK?

    You also need to start trying to get some nutition as you know you are very underweight, so this is another thing that will make you very tired. I hope you are trying to make shakes or whatever to boost your calories/protein etc.

    It could be that you will have some FM when this IV ends. But FM may come in falres too, and if you are comorbid at present(all diseases together) ridding the body of a good part of one of them is going to make a difference.

    Also, remember the Lyme will not go away overnight, it will take time and there may be some residual effects that can be helped with meds.

    One day at a time dear!

    Your friend, Anne
  11. Shannonsparkles

    Shannonsparkles New Member

    Thanks Stormyskye, good idea!