Can you please give me your opinion, needing help

Discussion in 'Fibromyalgia Main Forum' started by pawneeem, Aug 15, 2008.

  1. pawneeem

    pawneeem New Member

    I am just wanting to get some helpful info.
    I have had these wierd symptoms for the last 10+ years and my doctors don't seem to be helping. Could this be fibromyalgia? I guess I am trying to Dx myslf since I am not getting much help. Here are the symptoms,
    Overall body pain in the muscles, neck, hips, lower back, knees and wrists, constant headaches, severe at times, a strange pain in my right side that feels like a bad, bad side ache ( the only relief for that is laying down and resting) some IBS symptoms, a strange flu like feeling in my body(without fevers) when I get really bad(kind of a flare-up situation where I feel terrible, goes away in a week or so) PMS symptoms, memory difficulties at times, anxiety over the little things, nervous most of the time and worry endlessly, find myself withdrawing from social events(don't really know why,)fuzzy head (maybe due to headaches), bad weather makes my symptoms worse, always cold and hurting, anyway that is enough. I asked my last doc about the possibility of FM and he said he really doesn't want to Dx that and put me on Ultram which upset my stomach so he put me on Vicodine and Ambein which I only take when desperate. I live daily with the symptoms and tried years ago to find the solution. Always thought it was due to a bad back which runs in my family. Went to every doc possible and then have tried Chiro's, massage therapists, ect. and still I seem to get a little worse each year. I did find out this year that I have a bit of degenerative disk disease in my L5 and S1 joint but that is the only physical thing they have found wrong with me. Doc told me to just exercise and swim. I do exercise, walk, and have recently tried water classes(the first one wiped me out for four days. I hurt all over and had a terrible headache that would not go away). I take over the counter pain pills but they never even touch my symptoms. I suffer in silience, and just pretend that I am ok. I guess I am just tired of thinking everyone lives like this and nothing is really wrong. That's what the docs are telling me. I think I would feel better if I knew I had something. That I could deal with and work on. So I am looking for answers on my own and would appreciate any help you could give me. Thanks.
  2. First off WELCOME to this wonderful site. I assume the drs. run all kinds of bloodwork. It does definately sound like fibro to me. For me exercise is the worst thing I do, it is like a snowball effect for me. Others tolerate it. I hear you and feel sorry that you don't seem to get answers from drs. , find another if your not happy with them. good luck.

    By the way I also always pretended I was "normal" and now I am in so much pain its hard to do. So don't do it.
    [This Message was Edited on 08/15/2008]
  3. kellygirl

    kellygirl Member

    I was wondering if you live near a teaching hospital. Years ago, when I was first dx'd in the late 80's, I wanted a diagnosis that was curable and went to our teaching hospital here, Hershey Medical. I spent my own money to get the same diagnosis that my doctor had given me.

    I had the mono onset, which was dx'd as Chronic Fatigue Syndrome. Later camr the Fibromyalgia with the pain and tendonitis. I also had a whiplash injury where the FMS set in and my 3 sisters also have been dx'd with FMS. So, my doctor said I fit all three of his categories: viral, genetic and trauma.

    Also, I was wondering, are you also trying to work? Just curiosity.

    Don't give up trying to get a diagnosis. No, it is not "normal" to live like you say you are living. Without a diagnosis, you don't know what you are treating and how to treat it.
  4. pawneeem

    pawneeem New Member

    Thanks everyone for replying to my post. It does feel good to have the support and I am enjoying this message board as I am learning a gret deal.
  5. kellyann

    kellyann New Member

    It sure sounds like you have FM to me! Welcome to this site, I am sure you will find a lot of information here! And lots of friends!

    Welcome Aboard!

  6. pawneeem

    pawneeem New Member

    Kellygirl, I am not working anymore. Believe it or not I use to own a housekeeping business. But my back pain was so bad that I had to quit this Jan. when I found out that I had degenerative disk disease. I do miss working though and wish I could find something that would keep me busy. Thanks for your reply.
  7. JD99

    JD99 New Member

    Sounds like fibro to me, too. It took 3 years for me to get a diagnosis, you just have to keep pushing and asking for specialists. My family doctor just wanted to give me anti-depressants for being too stressed and depressed and call it a day, thought I was making things up or it was all in my head because the symptoms are weird and seem unrelated.
  8. bunnyfluff

    bunnyfluff Member

    point to Lyme. There have been about 40 people on this board alone that have been previously Dx'd with FMS/CFS this year that have found out it had been Lyme all along.

    I never had a tick bite/rash, but after 10 yrs of being mis-diagnosed, I finally got an answer.

    Fibromyalgia is not a disease. It is a collection of symptoms for which they do not have a "cause".

    Something is making you sick~ and you will have to be the one to keep digging until you find the cause.

    Lyme Symptoms:

    General info/symptoms of Lyme:

    Lyme Disease ( commonly misspelled as Lime or Lymes ) 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. <<< IMPORTANT <<<

    Lyme Disease, SYMPTOMS & CHARACTERISTICS, a compilation of peer-reviewed literature reports

    The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscreet 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.

    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 epidemic in Canada/US 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 effect from alcohol and possible worse hangover

    If this describes you, or someone you know, PLEASE,PLEASE get the proper testing for Lyme (currently the most accurate is Igenex ~ 2008). Post your results, or take them to a LLMD (lyme-literate Dr.). There are many places to get treatment, and advice.

    My best to all,

  9. pawneeem

    pawneeem New Member

    Thanks Bunny for the wonderful info on Lyme disease.
    I will talk to my doctor next week when I go in for a review to see if that is what I possibly have. I do seem to have alot of the same symptons. We do have to consider everything when we are trying to figure out our problems, you were very helpful.Thanks again,
  10. tandy

    tandy New Member

    Welcome to our board~
    Wow! reading into the 3 rd or 4th line of your post made me instantly think classic Fibro.
    I've had this disease for about 15 yrs and you've described me to a T.
    Are you also tired no matter how much sleep you get?? (you may have already said that,... but I forget too easily)
    Maybe you should get a referrel to a Rhuematologist?
    They can better DX Fibro and other arthritic & autoimmune stuff.
    It took me 5 drs. and 2 yrs to get my DX.
    and yes,... having at least a name for all your symptoms does help. At least then you know what your dealing with. To have dr. after dr. tell you your ok,... is frustrating!!
    glad your here & hope this has helped a little,
  11. pawneeem

    pawneeem New Member

    Thanks for your post and encouragement.
    I am tired alot. I do not sleep well at night and wake up at least 4 to 5 times every night. No matter what I try I cannot sleep through the night. I am headed to the doctor next week so I am hoping for some good luck and Dx from her. We will see
    Thanks again for your support and taking the time to write back.
  12. Janalynn

    Janalynn New Member

    Do not give up on finding a diagnosis. Of course, I'm no dr., but it sounds like fibro to me. I lived for SO many years thinking first that everyone else must feel the way I do, then next that this was just the way I was.
    You do need to have bloodwork done to have other things ruled out - a good doctor will do that for you.

    My PCP suspected Fibro (she was a brand new doctor to me and immediately suspected it), she then referred me to a rheumatologist who confirmed. I have pretty classic symptoms and truthfully it sounds like you do as well. Google Fibro symptoms, there are little quizzes you can take, I'll bet you'll probably fit. Of course - self diagnosing is not the way to go, but it's certainly a start when you aren't getting anywhere with Dr.'s. BUT you need a dr. to diagnose so you can get some help.
    Good luck to you!
  13. JD99

    JD99 New Member

    One of my co-workers just had Lyme disease diagnosed less than a month ago. Much of what she described didn't match fibro but I know people can be affected differently. The main difference for her was that her body was incredibly swelled up. She thought she had RA. Just ask about both. Her doctor wouldn't have thought to test for Lyme if she hadn't brought it up.
  14. Crispangel66

    Crispangel66 New Member

    I just read your post and it does sound like fms to me and I have had it for 13yrs. Good luck on getting a dianosis, it took a long time for me to get one, I thought I was going crazy but then I finally got my diagnosis. Then I have had a wonderful dr who has been treating me all these yrs and he got fired for spending too much time with his patients. Now I am trying to find someone who believes in this fibromyalgia stuff. I know I have it and believe in it it is just hard to find someone to treat it.

  15. dragon06

    dragon06 New Member

    Sounds like it could be FM. I would push your doctor for a diagnosis, if she is willing to Rx you Vicodin then she obviously believes your in pain.

    If she will not give you a Dx then I would ask for a referral to a Rheumy or find another doctor who will give you a Dx. It is important to have, especially if you are ever going to apply for disability.

    Sorry to hear you are in so much pain. One thing that I have learned with having this illness for so long (my mother has it too) is don't wait too long to take your pain meds. If you wait until you can't stand it anymore then it takes more meds to help with the pain. Try to take them in a more theraputic way. Also chronic pain is very hard on our bodies so taking regular pain meds can be very important so that your body doesn't get worse and can heal.

    If you go to the search bar and look at chronic pain I believe you will find a post that has a big explanation about regular pain management.
  16. pawneeem

    pawneeem New Member

    Once again thanks for the support. You all have been wonderful and it is nice to see so many people care!!! I am so glad I stumbled on to this site.