Pls help! Does this sound like Fibro?

08-29-2009, 09:49 PM

My partner has been having severe symptoms for quite awhile and no one here has taken her seriously or found anything wrong with her. She's had CT scan, MRI w/ and w/o contrast, ANA testing, lyme test, EMG, EEG, etc. She has tested normal/negative for everything. She was finally diagnosed with Fibromyalgia by a Rheumatologist but her primary doctor isn't convinced that that is what's wrong. We don't know anyone who has Fibro so we have no one to talk to about this.
She is weaning off of a high dose of Neurontin, taking Cymbalta 60 mg, Nortriptyline 25 mg. She was prescribed Vicodin, Percocet and Ultram but nothing does anything for her pain.

Do any of these symptoms sound like fibro?
Severe pain (stabbing, shooting, electrical) like someone is trying to cut off her arm or railroad spikes are impaling her
Numbness/Tingling
Twitching (she gave herself a 2nd degree burn because she was holding something hot and she twitched)
Headaches
Blurred vision and eye pain
Intermittent facial paralysis (She was seen by the ER for her headaches and they said she had Bell's Palsy because her face was drooping on one side)
Trouble swallowing (sometimes because the side of her mouth droops or her throat feels like it is closing up)
Confusion
Forgetfullness
Slow word recall
Diminished sense of smell/taste (Can only smell or taste things like vinegar)
Weakness to the point of not being able to walk
Slurred speech (she says that her tongue feels too big for her mouth)
Dizziness/Vertigo
Feeling like there are bugs crawling under her skin
Feeling like there are needles being threaded under her fingernails
Extreme fatigue to the point of passing out while doing other activities
Numbness in extremities (can't feel her leg at all)

08-30-2009, 08:03 AM

these are symptoms I can relate with (I have Fibromyalgia)

Severe pain (stabbing, shooting, electrical)
(my pain is usually not severe though - not that it hasn't ever been though)
Numbness/Tingling
Twitching
Headaches
Confusion
Forgetfullness
Dizziness/Vertigo
Feeling like there are bugs crawling under her skin
(that's tingling sensations I believe & I get them all the time)
Extreme fatigue to the point of passing out while doing other activities
(also have chronic fatigue)

These symptoms, I can't relate to:

Blurred vision and eye pain
Intermittent facial paralysis
Trouble swallowing
Slow word recall
Diminished sense of smell/taste
Weakness to the point of not being able to walk
Slurred speech
Feeling like there are needles being threaded under her fingernails
Numbness in extremities

Her symptoms are pretty extreme, has she had a brain MRI? That to me almost sounds like stroke symptoms.

08-30-2009, 08:32 AM

I can relate to the same symptoms as nereragain444, but I CAN ADD:
blurred vision
slow word recall
Weakness to the point of not being able to walk (although it is rare)

I agree that the other symptoms are extreme. I don't recall reading about those before. Good Luck and Good Health!

08-30-2009, 08:32 AM

I don't know about whether she might have fibro or not, I'll leave that to those that know a lot more about it, but with the neurological effects could be side effects from a high dose of neurontin. I was on around 800mg and had neurological side effects, and the same with lyrica only worse on the neurological effects. I was acting like I had a stroke, and had severe difficulties with speaking. I did ok with the computer, but could not talk. If they have already done those tests a stroke would likely have shown up. I'd get her off the neurontin as quickly as the Dr. says is safe and go from there. It's not that common so a lot of docs don't expect it, but it can cause severe neurological side effects.

Tigg.

08-30-2009, 04:09 PM

I also can relate to the same symptons as Neveragain - the other symptons are not ones that I've experienced. This on its own is probably not useful but if enough people respond it may help you to paint a picture of what it may or may not be. The neurontin avenue certainly sounds like a route following up on - good luck

08-31-2009, 12:20 AM

She has had an MRI, CT scan and multiple blood tests checking for strokes, MS, autoimmune diseases, Lymes, etc. Everything has come back normal. The only test I think that she hasn't had is a lumbar puncture.
She was originally put on Neurontin years ago for nerve pain. Her family doctor gave it to her because she believed that her pain was peripheral neuropathy. Her dosage has increased slowly over the years. There was no dosage increase at the time of the onset of the majority of these symptoms. Now that she is being weaned off the neurontin, she is not experiencing any relief from the neurological symptoms. She went to a neurologist who said she didn't have peripheral neuropathy and then she was sent to a rheumatologist who couldn't find anything conclusive wrong and diagnosed her with fibro. Her symtoms have kept getting steadily worse throughout all of this.
I don't know if anyone has anything to add about this, but I keep going back to this...Her dad served 2 tours in Vietnam and was repeatedly exposed to Agent Orange. He is now receiving Agent Orange disability for diabetes and peripheral neuropathy.

Pls help! Does this sound like Fibro?

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