have no idea what to do

Discussion in 'Fibromyalgia Main Forum' started by CooBax, Jan 6, 2006.

  1. CooBax

    CooBax New Member

    Hi to everyone,

    This is all very new to me so please bare with me. I am a 38 year old female with two boys ages 8 and 10. Up until a year ago I was very active and loved to run and work out. I ran about 10 miles three times a week and walked everwhere. Last Christmas I had numbness in my leg and it travelled to the other leg. I also had fatigue that bed rid me for a month. I was not able to walk well because it felt like my legs were full of cement. Over the past year my symptoms have been...crazy fatigue that comes and goes...tingling in different areas...muscle twitching like crazy especially at night or at rest..jerking in my legs as well...brain fog...head aches...i wake up and feel terrible then as the day goes on i may get a few good hours....if i try to exercise at all within a few days i crash!!

    So far I have been to the Boston Leahy Clinic and had mri's...lumbar puncture...emg...evoked response...all the test showed nothing...my neuroligist here has done mri's and lots of other tests and nothing has ever showed. I was sure I had MS but every Doctor tells me it is not possible.

    I was told by a rhumatologist that it might be post viral cfs. Does anyone have similar symptoms? Does this sound like CFS? I am trying to find out information on CFS but it is very hard....the rhumatoligist said he didn't want to label me!!!

    If anyone has any advise I would love to hear from you..thanks for reading my story...

    Lesley



  2. CanBrit

    CanBrit Member

    I was diagnosed with FM in December 2004. As near as can be figured out, they think that a 24 stomach bug I had in August kicked off the FM as well as attacking my thyroid,causing Hashimoto's thyroiditis.

    I have trouble doing any kind of exercise. Just walking a half hour at lunchtime ended with me using a cane for a month. When I wakeup, I never know what is going to hurt. Extremely stiff. I seem to snap out of it for a few hours then by the time I'm coming home from work, I'm exhausted.

    Fatigue comes and goes but when it comes, I could fall asleep at the wheel. I can understand your rheumatologist not wanting to label you. These kind of chronic illness can prevent obtaining insurance, etc.

    Hang in there. I found the hardest thing was to accept that I had it. Now, I just try to get on with my life and try to learn what not to do.

    All the best,

    Eileen
  3. Solaris_Starr

    Solaris_Starr New Member

    How did it start, do you remember if you had a cold or the flu? What was going on at the time? Did your leg just become numb out of the blue. How long did it the numbness last and were there any other symptoms that happened at the same time?

    It could very well be CFIDS, all of ours here on the board started one weird way or another, you certainly have symptoms. My advice, keep going to the doctor...don't let them poo poo you. Keep track of your sysmptoms (journal) to take with you. Follow up on all tests, change doctors if you have to. We have all doctor shopped at one point or another. It can be frustrating and depressing at times, just hang in there. This board is great for support and info.

    Sandy
  4. NyroFan

    NyroFan New Member

    Lesley:
    I might keep an eye on the doc who said you might have post-viral CFS and dare him to label you. So many of us take years before we are officially told what we have.
    Telling you it might be CFS is a start and maybe the rheumatologist can help you.

    And doctor shopping is a given: usually.

    Hugs,
    NyroFan
  5. CooBax

    CooBax New Member

    Hey Sandy,

    Thanks so much for your quick response. Funny you mentioned when did it start....Four summers ago I came down with a strange virus causing my neck glands to be swollen for about four weeks. None of the Doctors I saw knew what it was....they tested me for mono because I was exhausted and had no energy, but only once...then that fall I came down with immence fatigue that crushed me for 6 weeks.....its the flu was all I heard. For the rest of the year I felt good and normal...I ran a lot but did find I was tired after a long run....then last Dec.04 my foot went numb and tingly and within a week I felt like my body was buzzing....I could not walk well or do anything other then lie in bed ...the fatigue was sickning. Through the spring I did get a little better at times, then would crash....At present I can manage well if I do not exercise...i am still very tired but not to the point that it is cripling me. My muscle twitch all the time especially when I am tired.....i also have an electrical current go up my leg if I tap on my ankle...at any rate if you have any more good advise please let me know...thanks...hope you are well...

    Lesley
  6. hopeful4

    hopeful4 New Member

    Warm welcome here, although sorry to hear you're ill! It's so difficult to go through this, and go from Dr. to Dr. without answers that you so desperately want.

    I was ill with CFIDS for 5.5 yrs., disabled, before being diagnosed with the culprit that took me down: Lyme Disease.

    Please consider testing for this. It is very important to be seen by a doctor very knowledgeable about Lyme, since most doctors miss this diagnosis.

    Seek out a LLMD, Lyme Literate Medical Doctor, in your area. You can find one on lymnet dot org. Most lab tests are unreliable, however the Igenex Western Blot is considered more reliable. The diagnosis itself is clinical, based on your symptoms, history, and of course, the test as well.

    Many of us here are finding that we have Lyme. It is not necessary to know that you have been bitten, nor have the "bulls-eye" rash. I didn't, many don't.

    Lyme is treatable, not a picnic, but treatable. Perhaps the article below will help.

    Best wishes for your health,
    Hopeful4



    Lyme Disease

    This is getting popular around here. Hope it helps. It's been reposted several times now, originally from karatelady52.

    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


    Eyes/Vision

    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


    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

    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. CooBax

    CooBax New Member

    Just wanted to thank everyone who wrote me with great advise....I have received more care, compassion and understanding on line from perfect strangers then I have from all the Doctors I have seen. What does that say...I wish everyone good health for 2006...

    Lesley
  8. CooBax

    CooBax New Member

    A big thanks for the lyme advice....i now have a contact number for my area...NB Canada....it does sound a lot like me..thanks again will let you know how i make out...

    Lesley