Discussions By Condition: Fibromyalgia

How come I can't get a diagnosis?

Posted In: Fibromyalgia 3 Replies
  • Posted By: twogreatkids
  • April 28, 2008
  • 02:32 AM

I'm 27 years old I have seen numerous doctors including neurologists! No one has ever been able to tell me whats wrong but they never hesitate to look at me like I'm crazy when I tell them my symptoms. The only thing I have been diagnosed with is depression, and quite frankly I don't think thats the biggest of my problems. My best friend had heard of fibro and told me it sounded just like me. I have now been out of work for over a year relinquishing a promising career in law enforcement.:( How come a a 27 year old opthamologist could see what a dozen Drs. couldn't?:mad:
I found a list of symptoms someone posted on someone elses thread and I will include it. Even I was amazed at how many things I had that I never thought could be caused by the same thing. I'm currently taking depression meds and fiorecet for the headaches but I'm not getting any relief from either. I'm a nonstrict vegetarian who takes multi vitamins everyday and has been active everday of my life what can I do please help!
You'd be surprised at all the symptoms for Fibro. Theres a great book called Fibromyalgia & chronic Myofascial pain a survival manual by Devin Starlanyl & Mary Ellen Copeland that dedicates an entire chapter to symptoms alone. Here's a checklist found on a cafemom fibro group that is now circulating on myspace between FMily. Some have a few, others have all.
__x__ Fatigue, made worse by physical exertion or stress
___x_ Activity level decreased to less than 50% of pre-illness activity level
____ Recurrent flu-like illness
____Sore throat
_x___ Hoarseness
__x__ Tender or swollen lymph nodes (glands), especially in neck and underarms
____ Shortness of breath (air hunger) with little or no exertion
_x___ Frequent sighing
____Tremor or trembling
_x___ Severe nasal allergies (new allergies or worsening of previous allergies)
____ Cough
_x___ Night sweats
____ Low-grade fevers
_x___ Feeling cold often
____ Feeling hot often
_x___ Cold extremities (hands and feet)
_x___ Low body temperature (below 97.6)
_x___ Low blood pressure (below 110/70)
_x___ Heart palpitations
_x___ Dryness of eyes and/or mouth -
____ Increased thirst
_x___ Symptoms worsened by temperature changes
____ Symptoms worsened by air travel
_x___ Symptoms worsened by stress
_x___ Hypoglycemia (low blood sugar attacks)
_x___ Headache
____ Painful Menstruation
_x___ Tender points or trigger points -
_x___ Muscle pain
____ Muscle twitching
_x___ Muscle weakness
_x___ Paralysis or severe weakness of an arm or leg
_x___ Joint pain
_x___ TMJ syndrome
_x___ Chest pain
__x__ Lightheadedness; feeling "spaced out"
__x__Inability to think clearly ("brain fog") -
____ Seizures
____ Seizure-like episodes
____ Syncope (fainting) or blackouts
__x__ Sensation that you might faint -
__x__ Vertigo or dizziness
__x__ Numbness or tingling sensations
__x__ Tinnitus (ringing in one or both ears)
__x__ Photophobia (sensitivity to light)
__x__ Noise intolerance
__x__ Feeling spatially disoriented
_x___ Dysequilibrium (balance difficulty)
____ Staggering gait (clumsy walking; bumping into things)
_x___ Dropping things frequently
_x___ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
_x___ "Not quite seeing" what you are looking at
__x__ Hypersomnia (excessive sleeping)
__x__ Sleep disturbance: unrefreshing or non-restorative sleep
__x__ Sleep disturbance: difficulty falling asleep
_x___ Sleep disturbance: difficulty staying asleep (frequent awakenings)
__x__ Sleep disturbance: vivid or disturbing dreams or nightmares
__x__ Altered sleep/wake schedule (alertness/energy best late at night)
__x__ Depressed mood -
____ Suicidal thoughts
____ Suicide attempts
_x___ Feeling worthless
__x__ Frequent crying
__x__ Feeling helpless and/or hopeless
_x___ Inability to enjoy previously enjoyed activities
____ Increased appetite
__x__ Decreased appetite
__x__ Anxiety or fear when there is no obvious cause
_x___ Panic attacks
_x___ Irritability; overreaction
__x__ Rage attacks: anger outbursts with little or no cause
_x___ Abrupt, unpredictable mood swings
_x___ Phobias (irrational fears)
__x__ Personality changes
__x__ Eye pain
_x___ Changes in visual acuity (frequent changes in ability to see well)
_x___ Difficulty with accommodation (switching focus from one thing to another)
____ Blind spots in vision
_x___ Sensitivities to medications (unable to tolerate "normal" dosage)
_x___ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
_x___ Sensitivities to foods
__x__ Alcohol intolerance
____ Alteration of taste, smell, and/or hearing
_x___ Frequent urination
_x___ Painful urination or bladder pain
____ Prostate pain
____ Impotence
____ Endometriosis
____ Unexplained Hematuria (blood in the urine)
_x___ Decreased libido (sex drive)

__x__ Stomach ache; abdominal cramps
__x__ Nausea -
____ Vomiting
__x__ Esophageal reflux (heartburn)
_x___ Frequent diarrhea
__x__ Frequent constipation
__x__ Bloating; intestinal gas
__x__ Decreased appetite
____ Increased appetite
____ Food cravings
____ Weight gain (____ lbs)
____ Weight loss (____ lbs)
____ Rashes or sores -
__x__ Eczema or psoriasis
__x__ Hair loss
____ Mitral valve prolapse
____ Cancer
__x__ Dental problems
__x__ Periodontal (gum) disease
____ Aphthous ulcers (canker sores)
__x_ Difficulty with simple calculations (e.g., balancing checkbook)
__x__ Word-finding difficulty
_x___ Using the wrong word
__x__ Difficulty expressing ideas in words
__x__ Difficulty moving your mouth to speak
__x__ Slowed speech
____ Stuttering; stammering
___x_ Impaired ability to concentrate
__x__ Easily distracted during a task
__x__ Difficulty paying attention
__x__ Difficulty following a conversation when background noise is present
_x___ Losing your train of thought in the middle of a sentence
__x__ Difficulty putting tasks or things in proper sequence
__x__ Losing track in the middle of a task (remembering what to do next)
__x__ Difficulty with short-term memory
__x__ Difficulty with long-term memory
__x__ Forgetting how to do routine things
_x___ Difficulty understanding what you read
____ Switching left and right
_x___ Transposition (reversal) of numbers, words and/or letters when you speak
_x___ Transposition (reversal) of numbers, words and/or letters when you write
_x___ Difficulty remembering names of objects
_x___ Difficulty remembering names of people
____ Difficulty recognizing faces
_x___ Difficulty following simple written instructions
_x___ Difficulty following complicated written instructions
_x___ Difficulty following simple oral (spoken) instructions
_x___ Difficulty following complicated oral (spoken) instructions
____ Poor judgment
_x___ Difficulty making decisions
__x__ Difficulty integrating information (putting ideas together to form a complete picture or concept)
____ Difficulty following directions while driving
__x__ Becoming lost in familiar locations when driving
____ Feeling too disoriented to drive

144 total
105 have or have had more then once

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3 Replies:

  • I am just a little bit older than you - soon to be 34 - and I am struggling with your same question. 'Why can't I get a diagnosis?' We are very similar yet different. I, too, have MANY of the long list that you have given and have been very frustrated that I have not been able to get a diagnosis that fits OTHER than Fibromyalgia. No one seems to have the answer to me so they slap the FM label on and call it a day. From all of the research over the last 15 years and all of the doctors I have seen, there is not a test for FM but it is rather more like a diagnosis of exclusion. At least that is the way it has been explained to me time and again by the multitudes of Dr's that have attempted to crack the mystery known as myself. I was thought to have Lupus initially because I actually DID start out with real test results that were abnormal. And they either haven't gotten any better or bew things have popped up. When I first saw my PEDiATRICIAN (yes, it was THAT long ago that we believe this all started) I had presented with what seemed to be the symptoms of Mono(nucleosis). The Dr did the Epstein Barr to confirm and I was given the diagnosis of Mono. It wasn't until later that we found out that the test was not TECHNICALLY positive, however, the lab felt that with the growth rate of the abnormal cells it would eventually turn positive even though it was not QUITE positive when the results came back. And so the story began. I got better after about 2 months and it was awhile until I was ill again that I can recall. At least not anything as major as what came next. I had Osteosarcaoma when I was 15 and had lost a large portion of my humerus to the tumor that had grown from the inside of my bone out. I received a donor (cadaver) bone transplant and it held well for the next 13 years. In the meantime, after I had recovered from the surgery, about 2 years later I began feeling extraordinarily tired (more than usual and more than I could control anymore) and began getting severe migraines. Soon to follow was moderate to quickly progressing severe joint and muscle pain, weakness, and fatigue. I had always been fit so this was very new to me. One by one I began with the list you have above. The airheadedness, forgetfulness, forgeting the end of my sentences. This was blamed in the igraines and it seemed everytime something happened they explained it away but I knew it was more. Still do. Then I became so desperate and in pain at work one day that I literally could not bear my own weight my legs hur so badly. We went to our Family Practioner who ran some more tests and we had to wait for the results. In the meantime all I could do was to take the psychotropic drugs prescribed since everyone except me seemed to think that I was under a lot of stress and that was the cause. Of course the meds did nothing and when the tests finally came back, I found out that I had a positive ANA Titer as well as elevated SED rate. was told that this was a preliminary screener for Lupus. I also had low iron but had always has trouble on & off with that so that was no surprise. So, off to the Rheumatologist(s). I saw 7 of them before finally finding one that knew what she was doing. While she has done every test imaginable to try to fit my bizarre symtoms with something, she has yet to do so. Over these years I have had alopecia (hair loss patches & when it's not bald patches, it's consistently alot of hair. Esp in the shower. I developed a 'geographic tongue' which is just a fancy way of saying I get strange looking red sores or lesions on my tongue that hurt terribly. I saw a dermatologist to no avail. It comes and goes and nothing sets it off. These 'lesions' started to appear on the inside of my nostrils as well but no explanation. I stopped going to the Dr. for these symptoms since they were no doubt unexplained. I have reynaud's and don't tolerate the cold at all and can sweat while I am shivering. Just recently I had another MRI and it showed yet more degeneration in the discs of my low and mid back. The report also compared to the last and noted the shorteninng of disc space between discs indicating dehydraytion between the discs. There is also 2 mild disc bulges, and bilateral facet arthritis in 2 other discs. My Bone Scan from last year revealed degeneration in my ankes, wrists, knees, and RIGHT shoulder (not the one that I had Cancer in) and the radioloigists findings were 'consistent with a diagnosis of Rheumtoid Arthritis.' While this was not good news, at the time I was happy to finally have SOMETHING, but when I went to see my Rheumatologist to discuss the results, she informed me that I did not have RA since I have a Negative Rheumatoid Factor. So yet another 'symptom' to add to the list that we have been calling Fibromyalgia yet there are reportedly no tests for Fibromyalgia. Therefore these are all separate incidents from each other which means that I am a woman in my 30's with 3 children (now) with the body that is deteriorating at least 4 or 5 times the rate of a normal human being. My oain gets worse, depression is obviously mounting as a side effect of these 'symptoms' but we have absolutley no idea what is happening in my body. So I guess if I sound paranoid then I'll accept that. I kinda feel like I earned the right if I want to be. And I feel like no one knows your body better than you, doctor or no doctor. And if you aren't comfortable with what you're hearing, then go see someone else. If you suspect that you may have something, ask them to test for it. Who cares what they think. I feel like it's my life and I've lost far too much of it already. If I have an idea or a 'gut feeling' about something then I'm going to have it checked. I've got three beatiful little reasons why I have to keep going and a husband who has been there the past 12 years. I know that he's getting worn out but he still tries to put on his best game face for me. Sorry to hi-jack your thread, but I really want to know what else you are experiencing as well as what the doc's have told you. I know this is no picnic for you, believe me, but I was really glad to find someone that has so many similar problems and no answers. Going it alone is one of the worst things and even though I've got a caring family, they can never understand what it is that I am feeling like someone who has or is living it. I wish you well and will watch for any news or updates. I will do the same. Maybe we will get lucky and someone will have our answers! We can dream! ;)
    Heidi_Jo 1 Replies Flag this Response
  • My understanding is that FMS in not a diagnosis of exclusion. There actually are criteria put out by The American College of Rheumatology (1990). They are as follows:History of widespread pain has been present for at least 3 months (both sides of body above and below waist, both sides)Additionally, there are 18 trigger points and 11 of those must be tender to the touch.I am having difficulty finding a qualified doctor who can administer the test. You can go to this group's website to see the points. I hope this helps.
    sapphires 4 Replies Flag this Response
  • I read your post. It is so similar to everything I have been going through. Now my mother is going through the same thing as well. It seems there are so many women going through this. I have had every test under the sun, every part of my body scanned and almost every test imaginable. The only things they never checked was my digestive tract and airways. I was diagnosed with Celiac's in '09. Went gluten free and never got better. I went to the extreme with organic food and healthy life style and NEVER got any better. So I went to a Celiac's specialist. Turns out I may not have it. The blood test proves nothing. The biospy showed some damage which indicated I might have other food allergies. Low and behold, I just found out I am allergic to milk, bananas, beef, eggs, and much more. I think the panic attacks have been allergy attacks all along. And the unexplained wide array of various symptoms have been a slew of combination of problems caused by malabsorbtion and allergic reactions. I don't have the answer, but perhaps this helps.
    patti103 1 Replies
    • January 17, 2011
    • 03:40 AM
    • 0
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