Megan, have you been tested for autonomic neuropathy? Have you have skin biopsy done? 44lb weight loss should not occur with Fibro. They told me I had Fibro for years, until I got the skin biopsy....now I am on IVIG.

I talk to a DR that told me that the amount of fibers lost on skin is proportional to the neuropathic pain you have.

So I guess that when I do the test in one year from now maybe everything is normal and the pain is gonne. Maybe people feel pain because there is less nerve fibers on skin and not because your brain continoing to receive signals of pain from the nervous system. What do you think? After all skin biopsys are a very new procedure

I had my skin biopsy back in 2004. I don't know if pain is equal to nerve fibers lost. I have 2 fibers per mm in my calf.....yet my pain is like 'bone pain'...no burning.

Hope you recover and have no lasting effects.

--is not necessarily proportional to the amount of nerve fiber loss. It seems to have more to do with the presence of acidic inflammatory substances, such as the mysterious Substance P. that appear partly as the result of the breakdown of nerve components, and with the brain's difficulty in interpreting garbled signals from damaged pathways.

Pain is often most severe during an ongoin damage process, before the nerves have completely died. Dead nerves tend to leave patches of numbness. Of course, as many have reported, it is possible to have both pain and numbness at the same time from the same area, likely representing different stages of a damaging process at slightly different dermal levels.

Also, regenerating nerves are known to be qite painful in certain circumstances, as the growth cones fight through tissue to link up with their targets; the brain also has difficulty interpreting those incomplete signals.

Hi,

There is one thing I don't understand. Everytime you damage your nerve you are sure you gonna have a chronic neuropathic pain? Aren't the possibility of nerves regenerate and the pain is gonne forever? How long does it takes for a nerve to regenerate anyway?

I don't understand why people say that your nervous system is sending pain signals to your brain, when we can see through skin biopsies that the problem is there. You've got pain because you have a less nerves then a regular person on the area that is causing you pain. Why is this misterious explanation for neuropathic pain. This could be the explanation before 2006, but after this year they proved that the pain is due to a loss of nerve fibers on your skin. Isn't so? Or Do Cientist verify through nerve biopsys that the nerve is fine and despite this fact people still feel pain?

http://www.neuropathy.org/site/DocSe...pdf?docID=1661

By the way. My pain is intermitent (it is not constant) and I had my hands sometimes stiff. Any explanation for this? They feel swallowed but they aren't. And everything is fine on the X-Ray and blood exams.

Thank you,

PS: Sorry about my English

Cyclelops, I did have some autonomic tests done back at the end of 2007 within a couple of months of getting the neuropathic pain but BEFORE Gastroparesis.

They did the QSART and a cardiac test which were normal at the time. I didn't have the tilt table test. I haven't had a skin biopsy done as it is only available here for research purposes and rarely at that. As yet to my knowledge it has not been approved for general diagnostic use by the Australia Gov't protocols.

--are not even necessarily painful--they can experience numbness, phantom vibration, sensations of things that aren't there (parastheses), and a whole host of erroneous sensations or lack of sensations.

Much depends on which nerves are damaged--there are numerous types of both small and large sensory fibers, designed to detect different types of sensations--and to what extent (and where).

Yes, it is possible for nerves to regenerate. But they grow back more slowly than almost any other body tissue. One commonly cited figure that is commonly cited is under ooptimal conditions, they can grow 1mm a day. If you think about that, if you'er talking about a fiber to the distal part of a limb, you may be talking years before the full path is traversed--assuming the damage process has stopped, assuming it can reconnect with the original target (and it's likely to take a different path than it originally did, which may re-wire the body in a very different way than previously, if the damage was widespread).

I am more numb from the knees down, with a bone like pain in my tibia and foot area. Filipe, in my presentation, I had no pain below the knees! I didn't even realize when I hurt myself! I felt like a tight stocking was on. At first I thought I had a compartment syndrome. I was running on these feet and legs and ended up with a bad stress fracture which would not heal. Still no one thought neuropathy. It was not until my autonomic system failed that I got the neuropathy evaluation. Neuropathy is complex.

Megan, my QSARTS were abnormal....my thermoregulatory sweat test showed global anhidrosis. Can they do a tilt? After I flunked the autonomic battery, then they did a skin biopsy. I am cared for at a research center. You pretty much have to be at a research center here too, altho research centers are widely available. I did have to wait 3 months originally, and they wanted me to wait 6 months to get in!

Glenn, so if I read what you posted, +ANA=vasculitic in general? I am thinking it is vasculitic myself. Ugh.

Thanks for sharing.