neuro symptoms more distressing than pain...

Discussion in 'Fibromyalgia Main Forum' started by twitcher, Jun 27, 2006.

  1. twitcher

    twitcher New Member

    I'm far more disturbed by the neuro symptoms than by the pain. Don't get me wrong, I have pain. It's bad too. It's in shoulders, back, arms, neck, gluteals the worst, but many other places too. I am far more disturbed by the numbness, tingling and weakness. For example, both of my arms feel weak today like I won't be able to lift them but my hand squeezes are strong. Does that make sense? My legs feel the same and have random numb, tingly areas. These symptoms don't go away. I've had every neuro test known to man, including spinal tap...all normal. They say it's fibro but I just can't convince myself. It seems much worse to me, like a serious neuro problem. I've searched and it seems to me most people complain more of pain. What are your experiences? Thanks!
  2. elizajane40

    elizajane40 New Member

    I've had the tingling, numbness, weakness off and on for years. Have had the neuro tests, the mri's, the blood work, the nerve conduction tests. They all say I have fibromyalgia. Problem is having fibro doesn't tell anyone just how dibilitating this illness is. Most people don't even know what it is and if they think they know what it is, they are probably wrong in their assumption. I've finally given up on finding any other diagnosis. Doesn't mean that you should....Everyone has to come to their own conclusions...I wish you the very best and do hope you feel better soon....
  3. Ranigar

    Ranigar Member

    the neuro symptoms scare me the most especially random electrical shocks do you get that too?My EMG showed some permanent damage and DX was Sensory Neuropathy and that's in addition to Sjogren's and Fibro but I started out with leg and arm pain hardly able to walk.MRI showed ruptured discs4/5.Cymbalta eases it but it's starting to not work as well.I baby my R arm so I don't have to go back to the Dr. for possible rotater cuff surgery.Did your come out of the blue too?
  4. JewelRA

    JewelRA New Member

    I agree with apl. I want my mind back. I have not felt like myself in over a year, and now with the whole Effexor withdrawal and Paxil not helping me like it used to - I feel like a crazy person.

    The physical pain is horrific, but the mental stuff is the worst to me.
  5. twitcher

    twitcher New Member

    for your replies. Very good suggestions.

    Hayley, I have sore spots all over, hurt to touch. Worst is my back by my shoulder blades and my butt cheek and hip area. These never go away. I have my husband rub my back and it helps. I need to research where these are. This is more than just tender points.

    My symptoms did come on suddenly with leg weakness. Doc's said it was from herniated disk in my neck. I had a spinal fusion and have been on a steady decline since. Other than neck pain, I had no other pain until after surgery.

    Yes, I do get electrical shock feelings and many other feelings like burning on my scalp, legs, feet etc...

    Swimming is a great idea. I actually did that today and so far so good.

  6. hopeful4

    hopeful4 New Member

    I'm sorry that you are so frustrated. All along, my symptoms have been mostly neuro. Pain is mild or a non-issue at times. I went to many doctors over 5 years. They meant well, and tried to help me, but I continued to decline.

    Then I found a doctor who suggested that I be tested for Lyme Disease. Is this something you have ever considered? The symptoms of lyme overlap with CFIDS/FM and other illnesses.

    I never had a known tick bite, no rash, no acute symptoms.

    Test results alone will not diagnose, but the most reliable test is the Igenex Western Blot. It's a clinical diagnosis. Please consider seeing a lyme literate doctor (LLMD) which you can find at lymenet dot org, and read below:

    Below is an article from the Canadian Lyme Disease Foundation:

    Lyme (commonly misspelled as Lime or Lymes) Disease symptoms may show up fast, with a bang, or very slowly and innocuously. There may be initial flu-like symptoms with fever, headache, nausea, jaw pain, light sensitivity, red eyes, muscle ache and stiff neck. Many write this off as a flu and because the nymph stage of the tick is so tiny many do not recall a tick bite.

    The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscrete areas go undetected). Treatment in this early stage is critical.

    If left untreated or treated insufficiently symptoms may creep into ones life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.

    With symptoms present, a negative lab result means very little as they are very unreliable. The diagnosis, with today's limitations in the lab, must be clinical.

    Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. see -- Other Presentations and Misdiagnoses

    If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.

    If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

    The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

    No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit. Lyme is endemic in Canada period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.

    Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

    PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup)

    Symptoms of Lyme Disease

    The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
    Rash at site of bite
    Rashes on other parts of your body
    Rash basically circular and spreading out (or generalized)
    Raised rash, disappearing and recurring

    Head, Face, Neck

    Unexplained hair loss
    Headache, mild or severe, Seizures
    Pressure in Head, White Matter Lesions in Head (MRI)
    Twitching of facial or other muscles
    Facial paralysis (Bell's Palsy)
    Tingling of nose, (tip of) tongue, cheek or facial flushing
    Stiff or painful neck
    Jaw pain or stiffness
    Dental problems (unexplained)
    Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


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


    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

    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

    Mood swings, irritability, bi-polar disorder
    Unusual depression
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions, crying easily
    Too much sleep, or insomnia
    Difficulty falling or staying asleep
    Narcolepsy, sleep apnea
    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
    Forgetting how to perform simple tasks

    Reproduction and Sexuality

    Loss of sex drive
    Sexual dysfunction
    Unexplained menstral pain, irregularity
    Unexplained breast pain, discharge
    Testicular or pelvic pain

    General Well-being

    Unexplained weight gain, loss
    Extreme fatigue
    Swollen glands/lymph nodes
    Unexplained fevers (high or low grade)
    Continual infections (sinus, kidney, eye, etc.)
    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

    Allergies/Chemical sensitivities

    Increased affect from alcohol and possible worse hangover

  7. apl

    apl New Member

    bump for twitcher
  8. apl

    apl New Member

    bump for twitcher
  9. twitcher

    twitcher New Member

    I have been tested for lyme through Igenex. The results were negative by CDC...WB IGM 30+, 39 IND, 41 IND. I am seeing a llmd and am on treatment. I'm taking Biaxin and he just added Flagyl. He is not sure if it's lyme but it treating me based on symptoms. And yes I did have bullseye rash in 1992 followed 7 months later by a neurological syndrome similar to the one I have now. I'm just so skeptical. I want to know for certain what I have. Numerous tests have ruled out MS.

    apl..thanks for the bumps.

  10. hopeful4

    hopeful4 New Member

    Hi twitcher,
    Just getting back to you now. I also pm-ed you back at lymenet.

    My symptoms are mainly neurocognitive and psych, such things as:

    thinking problems, attention, memory, thinking slowly, poor focus and concentration, poor analytical ability, difficulty making decisions,

    easily overloaded cognitively and sensory, like short-circuiting, confusion, light sensitivity, sound sensitivity, getting lost, sleep problems, headaches, mood problems, depression, irritability,

    memory, slow thinking, brain fatigue, difficulty with conversations, attention deficit disorder-like symptoms

    I also have physical fatigue, TMJ, some acheyness and joint pain, more in the cold, wet weather, or especially when herxing or detoxing.

    There you go. I cheated and copied it off of a paper I have.

    When I first discovered a paper entitled: "Distinct pattern of cognitive impairment noted in study of Lyme patients" by Marian Rissenberg. PhD and Susan Chambers, MD, I finally and at long last felt understood and validated.

    I'm glad that you are seeing an LLMD. I can understand your skepticism, however, if you had a bullseye in 1992 perhaps you were not fully treated, or, you had co-infections not fully treated.

    If your recent Igenex showed some +, even though not CDC +, then with treatment it could increase the + bands. Was the test Igenex + ?

    Take care,
  11. kriskwon

    kriskwon New Member

    too. Like one twicher said - it was almost worst than the Fibro. I was sent to a Nuerologist and was dx with Nueropothy and Myopothy. Prescribed me with 300 mg, 3x daily of Nuerontin I've been on it 3 yers now and rarely have any symptoms. Sometimes my inner arms and staomach burn. My outter hip hurts the most (it always did), but mostly, not much pain. Thank God. Some nights I honstly thought that I has some weird disease that no one knew about and I was gonna die over night. Your mind can play some pretty bad tricks on you when you don't know what's wrong with you!
  12. minimonkey

    minimonkey New Member

    Hi Twitcher --

    I was going to mention Lyme, too -- I see that Hopeful beat you to the punch, and that you are already on board with that! I have Lyme, and have had neuro sx for many, many years. I agree, they ARE scary! Personally, they don't bother me as much as the excruciating pain does, but they are pretty freaky, especially when a new one pops up out of nowhere....

    I hope you do well with the abx treatment -- it can be a long road, but well worth it if you get better (I feel SO much better now!)