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JLYN 07-04-2006 08:03 PM

So what do you all think?
 
:wave: Hi..my name is JLyn & I have not been diagnosed with fibromyalgia, but in my quest to find out what is going on with me, I have stumbled upon the word and disease of 'fibro'...as you all refer to it.

My story begins with the birth of my darling daughter Jade 4 years ago. Immediately after having her, and up until a year ago I experienced terrible leg/knee pain. I couldn't kneel, crap somedays I felt like I could barely walk. I really didn't think much of it, chalked it up to some rough birthing....:dizzy:

Fast forward to almost a year ago, October. During daylight savings time. I noticed 'a lot' of eye floaters. 1 really big that kinda didn't 'float' but just hung around, impeding my vision. Bothersome. Also, I started noticing vision trouble @ night. Couldn't really see the road very well anymore @ night....made an appointment with my optometrist and had my glasses changed. That didn't help though. Went back, and the optometrist said that my pupils are abnormally large, so he tinted my glasses, and put a glare control on them, all with the thinking that this would help....even though I told him my problem was not due to light refraction.....oh well....
Nothing changed. I went back yet again...he then sent me to a retinologist. 1 look at me from the retinologist and he said "why are you here? your retinas are fine", and sent me to my primary doc.

Well you can only imagine...yep...that began what I call the 'bounce'....
bouncing from 1 doc to another....back and forth. new doc here, old doc there..here a doc, there a doc, everywhere a doc, doc....(sorry couldn't help myself :p )

Anyway, I have seen an ENT, 2 neuro's, 2 primary's, 1 endo, and still I have not 1 dx of ANYTHING! With the exception of my Hashimoto's that I have had since 11 years old and managed with meds.

Today I suffer from chronic low back pain...pain shooting across my lower back and then nerve pain shooting down my leg, into my calf. Sometimes up my back and into my neck. Bouts with Iritis (arthritis of the eye?), tremors of the right hand every once in awhile, continued eye floaters with the large spot in the right eye impeding vision, restless legs at night, queasy stomach some days...but not every day...sometimes with vomitting, dizziness/balance and 'lightheadedness', increased sensitivity to bright light, noise, and this one may sound weird...believe me I am weirded out by it....driving..when I am in a car the other car's appear to be going extremely recklessly fast...almost feels like anxiety in my chest...???? **** I really hope I am not going crazy too!...feet cramps, mucsle spasms, and finally..lastly...incredible fatigue!

What a list right? I am almost embarassed by it. It is extremely difficult for me to verbalize the list to doctors. I somehow feel like I am copping out, or feel 'less' somehow....I feel thier eyes...looking at me and wondering if they think I am just crazy.....

Well....I have had a CT scan done with the findings of 'frontal lobe atrophy', an MRI of the brain w/o contrast with no findings of lesions (they were looking for MS)., blood work to rule out lupus, rhematoid arth., diabetes, and even sphylillis (sp?)....which would have been crazy because I am married :dizzy: .....I even had my levels of TSH checked to make sure my Hashi's wasn't just acting up.

Other small stuff....could be related, could not be...
I was rear-ended in september of last year. Nothing in any testing suggests damage due to the accident. It was a low-speed rear-end...I had whiplash but only a slight case of it. Out of work for 3 days to rest....

I also am sensitive to heat. In it I become a wreck! Tired so tired....almost like...'let me ly down and die' tired....and my right hand begins to tremor...I also get queasy....

I go tomorrow to see my neuro again. The same neuro who told me I did not have MS. She wants to make sure she didn't miss anything....ya think? Then the following day I go for an ENG test. I guess I just don't know what to think...

Some days I feel so damn good. I wonder....AM I going crazy? Then WHAM...it's back and in full force...I actually have a name for it...it the symptoms...I call 'it' the MoNSTER! :D Because it is....

So, can all this be 'fibro'?
Does it sound possible? I am really thinking of discussing this with my doc tomorrow.....

I need answers..you see I have a full time family and a full full time job that is upper management, is very demanding, and very fast paced. I am losing my 'edge' if you will....I am not managing my life or my career very well anymore...barely...whatever this is is robbing me. Stealing from me...and I need to get a handle on it...

If it is 'fibro'...is it possible to get a handle on it?
Well..this is turning into the next great novel....:rolleyes: or not...but a novel anyways....I will quit now..
Thank you for reading and if you got this far....any advise and what you think is welcomed.

Thanks~
JLyn:wave:

Lost Robin 07-04-2006 09:50 PM

Re: So what do you all think?
 
Hi JLyn,

Yes, it is very possible that you have FM. Don't worry. None of us are going to think you are crazy! I think it is safe to say that most if not all of us here have experienced these symptoms and more. In fact, I personally have been able to identify a total of [B][COLOR="Red"]57[/COLOR][/B] symptoms at last count that are and/or can be associated with FM.

Since I was diagnosed with FM (fibromyalgia), I have also been dx'd with CFS (chronic fatigue syndrome), MPS (myofascial pain syndrome), RLS (restless leg syndrome), arteroschlerosis (hardening of the arteries) after having a mild stroke, bursitis in both shoulders, arthritis and bone spurs in my neck, osteoarthritis in both hands, thumbs and knees, severe obstructive sleep apnea. I pretty much was dx'd with one ailment after another during the past 3 years.

The pain, fatigue and "brain fog" or "fibro fog" eventually became so constant, severe, and unmanageable that I had no choice but to leave my job. Up until that time and from the first time I visited my GP and rheumie after I was dx'd I told my docs to write in large lettering on the inside of my file that I [B]MUST[/B] keep working.

Like you, I had a very responsible job as a regional administrator (manager) responsible for two regions in the US. My job could be quite demanding and stressful at times as with any management type position but I absolutely loved my job as well as the people I worked with. I am a 51 year-old single mom with 2 teenagers and I'm sure you understand at least some of the reasons that I absolutely had to work.

These illnesses (primarily FM) have been almost totally devastating for me and my children.

My first advice to you is DO NOT PANIC! There are many illnesses that mimic FM and since there are not yet any diagnostic tests for FM, it usually takes a while to get a dx of FM. It took me almost 2 years. (By the way, my rheumie recently told me that there are 3 diagnostic tests for FM just waiting to be approved by the FDA? or CDC? or whomever. I always get confused as to which one is which, especially when I'm feeling so incrediblly tired, week and/or confused!)

My best advice to you is continue looking for a GOOD rheumie and make sure you have a good family doc as these illnesses can be VERY elusive and tough to treat!

Best of luck to you and please keep writing. All of us here do really care!

Talk soon! :wave:

elmhar 07-05-2006 09:54 AM

Re: So what do you all think?
 
Hi JLyn,

Welcome to our board. Sorry to hear that you are having a number of problems.

IMO, maybe it's fibro, maybe not. Typical fibro criteria: * pain in all 4 quadrants of the body. * Numerous tender points. * Fatigue. However, there are people with Atypical fibro; maybe you're one.

I encourage you to continue your attempt at diagnostics, however, do not be in a hurry to seek a fibro dx. It's not always helpful, really a garbage-can dx, a default applied to a group of symptoms for which most other causes have been ruled out. (I look forward to those diagnostic tests Robin mentioned.) And once you get the label of fibro, you may find that any new symptoms are simply attributed to it.

A few questions to think about. Number one: 'rough birthing' followed by onset of symptoms. Did you hemorrhage or have heavy bleed postpartum bleeding. Has your pituitary function been tested. (CT & MRI show structure, not function.)

Number two: when did you last have your thyroid antibody levels (3 different ones) tested, and have they been increasing. Hashi's does have different phases with differing symptoms, & autoimmune activity can vary over time. Also, sometimes people get a combo of Graves & Hashi's autoimmune thyroiditis. Some of your symptoms do sound like possibly "mixed" thyroid. And they can wax/wane/flare. Have you had a thyroid ultrasound done recently to check for nodules (very common)? An autonomous nodule mixed with Hashi's is a tricky combo.

Number three: Have you had your free T3 thyroid hormone level checked recently? TSH is neither the most sensitive nor revealing test of thyroid function/dysfunction, particularly once one is on thyroid hormone replacement, and particularly when one is considering a fibro dx. Many folks have pituitary glitches & TSH is a pituitary hormone, making TSH a questionable substitute for more direct assessments of thyroid function.

Best wishes. I hope you let us know how it all turns out.

mim 07-07-2006 06:38 PM

Re: So what do you all think?
 
Hi JLyn, my fibro was diagnosed after a "whiplash" type head injury last October. Although I never passed out, apparently the whiplash movement shook my brain and severed neurons which have caused forgetfullness (short term memory), chronic myofascial syndrome, fibromyalgia, tmj, increased IBS, and other gastro problems, nerve pain in all kinds of places, tremors sometimes, increased anxiety and depression, and all the other "junk" that comes with a neurological injury. You have suffered what is termed a mild traumatic brain injury, but you may not have been told that is what brings out the medical issues. I am just now being evaluated again for Post concussion syndrome, and post traumatic stress disorder which has so many of the symptoms you hear associated with fibro.It all is tied in together. I hope you get some relief soon!
~Mim :wave:


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