neuropathic pain syndrome & fibro combo

Went to another new fibro doc today. She has to be one of the top 2 docs I have ever seen (and I have seen a LOT of docs). She was amazing. Excited to help me and went through every single body part of mine (organs included) and how they function and why and my medical history and wanting to put all the pieces together and throughout the talking did different parts of a physical exam and explained so much. Just thrilled with her. Decided to stay on the Lyrica because it was helping. See her again in 2 weeks. Oh, and she included my opinion and continually asked if I agreed and asked permission each time she wanted to look at or feel a joint. I felt very included in the process and decision making. She also had previously worked at the hospital where many of my docs work, so she knew a lot of them. She is going to contact most of them for further info etc. and to know what and why they are doing certain things as to not step on their toes. I was just blown away at what a good fibro doc is like!!

Anyhow, she came up with the diagnosis of neuropathic pain syndrome with a side order of fibromyalgia. Just wondering if anyone else here had neuropathic pain syndrome and would be willing to share their experience….I had never heard of it before today and would be really grateful to hear others' journeys thru this.


Thanks,

Sunny

i am not too sure myself. i just have lots of stuff going on.

After reading your posts, I am thinking maybe i misunderstood. I know she said those words, and that she said the nerve damage issues I have from a tethered spinal cord affect my entire body, but during that appt. she said so much (good thing not bad, she talked about all of her findings w/ my exam and medical history, trying to piece it all together). I was feeling overwhelmed with having a new doc, having a doc who cared enough to really dig into everything going on, and by everything she said. I will have to ask her about this when I see her in about 2 weeks.

Thanks for letting me know that you have never heard of this as a diagnosis covering the whole body. I didn't realize that I didn't understand what she meant and of course I want to know the correct info! At first when I read your posts, i was a little angry, thinking "they don't know what my doctor said, they don't know everything, why are they picking on me?" but then I realized you were trying to get me to understand, trying to help me…..so thanks! I am honestly working on learning to not react to things so fast and to not take things personally…I think I still need some work on that!!

Appreciate the feedback!


Sunny13

I will try to make this simple but like Neuropathy it's a complex and complicated issue to explain.

Neuropathic pain syndrome is a umbrella or broad term covering a vast amount of disorders of the nervous system however its more accurate to say it is referring to the causes of those disorders rather than the disorder itself.

There's 7 types of causes for neuropathy and these are what most Drs are referring to when saying you have a NPS

Toxic
Metabolic
Trauma
Compressive
Autoimmune
Infectious
Congenital

All neuropathic pain disorders have a direct link to one or more of these and they can cause either peripheral or central nerve damage.

It's been a ongoing battle for years over whether Fibro could be classified as a neuropathic disorder because there's rarely any link to one of these seven. However a slew of Drs have preformed a slew of studies and presented enough data to convince some of the Medical journals that it actually falls under metabolic neuropathy by showing that the majority of fibro study participants were suffering from some form of metabolism dysfunction causing a enzyme necessary for nerve cell function to be inadequate or missing altogether. Some medical folks say that this is far reaching but after hearing from enough Neuro docs and meeting enough fibro patients I'm a firm believer.

Take Sunny and look at her list of diagnosis and surgical procedures and are they not metabolic related or could they not cause metabolic issues? When you think of metabolism it's easy to just think diabetes and or stomach issues and omit endocrine related issues that are important for producing hormones that play important roles in the balance of enzymes our body uses for so much of cell function and reproduction.

Sunny I am assuming she was suggesting with the fibro you have a issue with metabolism or with your spinal issues a compressive disorder etc relating to or directly causing the neuropathy in general.

If you look at the seven causes of neuropathic issues fixes are pretty nonexistent so your referring then to a chronic state which we already knew neuropathy to be as well as all the diseases of it's class.

I was told it's called a syndrome since there is not one known cause, and possibly multiple causes, for the nerve pain.

Whatever the reason, nerve pain is awful to deal with, and it's hard to find meds to provide significant relief.

I'm so happy for you-sounds like your Dr is a winner:)