Fibromyalgia Community
Just got diagnosed with fibro but...
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Just got diagnosed with fibro but...

Just to recap, here's my original post that had my symptoms:

Here are the facts -

I've had very consistent symptoms:

Food sensitivity (gluten, nuts, beans, dairy, most fake processed foods)
GERD
Gas/Diarrhea

Vibration sensation in my legs, arms, groin
Aches in my arms, hands, legs, and feet (fingers, toes, elbows, and knees hurt most)
Muscles in my calves, arms, face feel a bit numb.

Sometimes I can wake up very stiff with aches in the morning.  Pain in my side or whatever I slept on.  Other times not so much.

Sleep apnea - hypopnea, not obstructive.

Idiopathic Urticharia

Certain foods can make it worse.  Stress/anxiety causes it all to hurt much more.

Things I do to manage the symptoms:
Use of a CPAP
I eat a plain diet of raw veggies and meat

Sometimes I get major flares up despite my best efforts of eating and stress reduction.

I mowed the lawn recently and got laid up for the rest of the day.  My muscles felt like they didn't want to work and I got really emotional.  It was weird.

Now instead of pin points of lights in my vision, I see squiggly lines of light.

Ears ring pretty regularly now.

My arms, groin, legs, hands, and feet ache.  They have a constant vibration feeling and they getting weak.

I have an appointment at Johns Hopkins to hopefully figure out this mystery since the local neurologist came up with nothing.  He said to go to Hopkins.

I saw the doctor at Hopkins whose office was just a regular doctor's office attached to Hopkins.  It wasn't the actual Hospital itself.  He did the same exact thing my original neurologist did.  Check out my symptoms, had me move my limbs, checked tenderness, had me walk etc.

He said fibromylagia (fibromyalgia).  Mind you my last neurologist did the same thing and told me to go to Johns Hopkins to get looked at further.  So I think I wasted my time.

I got a prescription for Savella so we'll see how it works.

My only concern is the fact that no one up to this point has done an MRI of my brain.  Should I wait it out with Savella or push to have them do the MRI and/or Spinal just to rule stuff out?

I had a MRI of my spine last year and nothing showed up.  It is my understanding that this has to be done periodically to check for stuff.

The neurologist said it could also be somatoform, small fiber neuropathy...  I just left there feeling that this guy wanted me to come back with something more like my arm not moving or in a wheelchair or something.

I dunno, what do you all think?
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2 Comments Post a Comment
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Avatar_f_tn
A MRI was the first thing my neurologist did to rule anything out.
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Avatar_m_tn
Yeah I think maybe they are trying to tie all of the symptoms together but shouldn't be.
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