[heb1212]

Hi, All... I'm jumping over from the Peripheral Neuropathy forum to you all as there's now the suggestion... after three years of extensive, extensive testing... that my symptoms, suffering and pain may now be more in the realm of fibromyalgia than neuropathy (though probably overlapping). There's a couple things just outside the range of normal, but nothing glaringly noteable diagnostically. I had something called parvo virus b19 (adult version of 5ths Disease) at the onset of all this, and still have evidence of it in my blood. Gosh, my entire body burns from head to toes, literally. Terrible aching deep pain, too. The most recent development as of 2014 is that my pain has moved inward. I now have severe abdominal and pelvic pain. There just hasn't been any leveling off of my pain/symptoms in the last three years. It leaves me wondering where I'll end up and concerned about true disability. The thing is, I don't have ANY tender/trigger points typically associated with a fibro diagnosis. The pain is simply everywhere.
Any input from others who have lived this? Thanks so much.

[chloecasey]

Originally Posted by heb1212

Hi, All... I'm jumping over from the Peripheral Neuropathy forum to you all as there's now the suggestion... after three years of extensive, extensive testing... that my symptoms, suffering and pain may now be more in the realm of fibromyalgia than neuropathy (though probably overlapping). There's a couple things just outside the range of normal, but nothing glaringly noteable diagnostically. I had something called parvo virus b19 (adult version of 5ths Disease) at the onset of all this, and still have evidence of it in my blood. Gosh, my entire body burns from head to toes, literally. Terrible aching deep pain, too. The most recent development as of 2014 is that my pain has moved inward. I now have severe abdominal and pelvic pain. There just hasn't been any leveling off of my pain/symptoms in the last three years. It leaves me wondering where I'll end up and concerned about true disability. The thing is, I don't have ANY tender/trigger points typically associated with a fibro diagnosis. The pain is simply everywhere.
Any input from others who have lived this? Thanks so much.

heb1212

There is a segment of Dr. Oz from 7/23/2013 that is very informative on Fibromyalgia and part of the segment is an interview with a Dr. Sean Mackey from Stanford who is a pain management specialist and his research on Fibro....in checking out Stanfords website there is also some good articles on chronic pain, etc.

As far as the tender points there are theories now that some Fibro patients don't always have the tender points.

There are so many possibilities of how chronic widespread pain occurs but it really does seem to point towards how our brain responds to pain after nerves are damaged........in my case I believe are from Surgeries, MRSA while in hospital, Mono 6 weeks after surgeries, breathing issues caused from surgeries, & other complications....now almost 4 years post-op.

chloecasey

[Dmom3005]

Welcome to our forum.

I know just in the last year or two its being told the tender points aren't anymore. I have some of them. I always have, even when looking
into other things.

But I take gabapentin and it controls mine very well. that is the best
thing to do. Find something that works.

Donna

[chloecasey]

Originally Posted by Dmom3005

Welcome to our forum.

I know just in the last year or two its being told the tender points aren't anymore. I have some of them. I always have, even when looking
into other things.

But I take gabapentin and it controls mine very well. that is the best
thing to do. Find something that works.

Donna

Just was diagnosed for sure with Fibromyalgia by a rheumatologist.
He explained that the nerve damage from surgeries, etc. started the vicious cycle of my pain, along with neck arthritis now.

He has just started me on the Gababentin, gradual to full dose of 2400mg daily, Duloxetine 60mg daily and hydrocodone when needed. Also exercise, acupunture (anyone's thought on that?), myofascial release (anone's thought on that?), biofeededback (anyone's thought on that?).

Will try to be positive......just difficult when you feel so lousy?

chloecasey