please help is this fibro

[DoubleD13311969]

Hello,

I posted on the neurology forum also.

Can somebody please help me I am going crazy.  I am a 39 yr old male with tons of symptoms.  I am getting worse and believe I may be dieing.  Here are my main symptoms:

Face:  Extreme TMJ.  Lots of facial pain, fatigue, burning.  I am a teeth clencher.  

Legs:   Tight painful legs.  Cannot walk more then about 5 minutes before extreme lower back and leg pain.

Feet:  Ice cold most of the day.  Shooting electrical pain, lots of cramping, burning, itching, feels like a tight band around my arches.

Arm:  Diagnosed with carpel tunnel, all those symptoms

Eyes:  Lots of floaters in left eye

Head:  Tinnitus, fogginess.  The loud ringing is driving me crazy!

I have had body wide twitching for 3 years.  I am a horrible sleeper, but when I do sleep its just more hours to clench my teeth.

I have had 3 clean emgs, 5 ncv’s, 2 clear mri’s,  TONS of blood work, a muscle biopsy(showed mild myopathy), cardio tests, food allergy teats, sleep studies…………..  All basically clear.

I take Lyrica, Klonopin, vitamins, phrlosec, and sleep meds daily.

I have been diagnosed with Benign cramp fasciculation syndrome, idiopathic peripheral neuropathy, plus a few other things that were later un-diagnosed.

The doctors say my condition will wax and wane and that anxiety is main contributor.  

Please somebody help me.  I feel I am losing hope everyday.

2 doctors say I have all the tender points but say no to fibro because the neuropathy.  Am I crazy!!????

Thank you

DD

[DoubleD13311969]

Thank you all for your help.

DD

[ginak]

You are not alone in the type of symptoms that you are experiencing. I too have many of the same symptoms that you have. My lyme tests have been very conflicting, but I am getting ready to start on a course of antibiotics. I have been to 14 doctors, every test you could probably think of, and all I know for sure is that I have Epstein Barr Virus, Low Vitamin D, and slightly increased thyroid antibodies. My neurologist thinks MS and the LLMD thinks Lyme. I just want to get better and not finding very much cooperation with the medical community right now. Continue to find the answers that you need. I have found the people on medhelp to be more helpful than some of the doctors that I have gone to. Keep your head up, know that you are NOT crazy, and keep fighting until someone is willing to help you.

[Ree4tu]

Lyme tests are not reliable.  You can have Lyme and test negative, many people do. I would not dismiss the Lyme idea. Did you try posting your symptoms in the Lyme Forum?  There are a lot of experienced people who can help you. Your symptoms do not sound like Fibro, there is more going on.

[DoubleD13311969]

Thanks for the feed back.  I really am thankful.  Sorry I forgot to add that I was tested twice for Lyme and both negative.  Also negative for Celiac's and Diabetes.  So many tests hard to remember.



Was bad when this started 3 years ago.  Started to feel normal but last month started a down spiral again.

Can you have fibro and have neuropathy symptoms?

Thanks

DD

[Ree4tu]

I am sorry, my message to zippazappa meant to go to you, obviously.

[patsy10]

Ditto what Ree4tu said.

[Ree4tu]

You are not crazy. Your symptoms sound like Lyme Disease. The problem with Fibro is there are many infectious causes which go unrecognized by many doctors.  Please get tested for Lyme through Igenex.

[zippazappa]

sorry your experiencing such ill health, and am sorry nobody else has answered you hopfully people will in time. please dont think that your going crazy, i think we all hve at some point on here so your not alone... i cant really answer your question as i dont get any help from specialist just my gp....your symptoms sound very familar to fm. if so it will wax and wane and some flare ups are worse than others, it sounds like a flare up your experiencing.. we all have symptoms some more than others...I have been dx for 2half years with fm/cfs and i have only just been given a anti-dep ciltrapram thats working well...tis also a matter of trail and error for what works best for you
take care and keep well
zz