Sorry to hear about your pain. It sounds like you are getting a little bit of the run around here. You really need to see a Rheumatologist who is friendly to Fibromyalgia. I looked at your profile and didn't notice where you live. Are you in the states or outside? Below is a really good website to find a doctor or provider who knows how to treat and diagnose FM and CFS. Depending on where you live, I may have one more site for you.
Thanks for the info Dusty. I do live in the states-in the midwest. I appreciate this forum. I have been reading quite a bit. this seems to be such a frustrating condition, not only because of the symptoms but because of how hard it is to get a dx and treatment.
Thanks again for the link. For my state, there was only one listing and it's for a town I've not heard of. Anyone know of a good doctor in Indiana?
Any other information or links would be appreciated.
I would encourage you to check out Lyme disease by an ILADS trained LLMD (Lyme Literate Doctor).
I have recently been diagnosed with Lyme disease after more than a year of weird muscle pain and strange symptoms. I went to multiple doctors and even had a Lyme test in March which was negative.
I have since learned the standard tests are wrong 50% of the time. Lyme is in 49 of 50 states (except Hawaii.) I have met numerous people orginally diagnosed with Fibro when it was really lyme. They went for years without getting proper treatment.
The only way to get properly diagnosed is to find an LLMD and get an evaluation. Most do not take insurance. The ILADS can help find one...also Lymenet. Get educated. CHeck out the documentary film "under our skin" (search for it on the internet / youtube.)
Please know Lyme is controversial and most regular docs do not know how to properly diagnose it or treat it. They follow the IDSA guidelines which are not effective to treating chronic lyme.
The good news is 80% of lymies make a full recovery with proper treatment. But it can take a long time and you won't get well unless you get an LLMD.
Here is a complete list of LYme symptoms
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 Diseases and Lyme...Relationship
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.
Free Canadian Lyme Disease Brochure (a computer file for you to print)
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, oval and spreading out (more generalized)
Raised rash, disappearing and recurring
Head, Face, Neck
Unexplained hair loss
Headache, mild or severe, Seizures
Pressure in head, white matter lesions in brain (MRI)
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy, Horner's syndrome)
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)
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
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
Mood swings, irritability, bi-polar disorder
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
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)
Forgetting how to perform simple tasks
Reproduction and Sexuality
Loss of sex drive
Unexplained menstral pain, irregularity
Unexplained breast pain, discharge
Testicular or pelvic pain
Unexplained weight gain, loss
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
Increased effect from alcohol and possible worse hangover