Neurophathic Pain of the Abdominal Wall?

I have always, and will always, say, that I would never, ever want someone to physically know what it is like to have any illness or pain. However, I've recently started to wonder if there are benefits to knowing if anyone else has this diagnosis.

I've had T1 for, goodness, 19ish years, and several years ago I started having pains in my stomach. I've had scopes in places I'd rather not rethink, scans, xrays, dietary changes, spinal injections, even Botox injections in my tummy, you name it. No diagnosis.

This past fall, however, I had the opportunity to go to UAB (Univ of Alabama, Birmingham). After the usual what are you taking, what procedures have you had done, what works, what doesn't, etc, the doctor asked me why I was sitting in the position I was.

To be honest, I didn't even know what he was referring to, however, at that moment I realized that I had been sitting in his straight back chair more like as if I were in a recliner. He asked if that was a common, comfortable way for me to sit. I hadn't really noticed before, but he was correct. That is, and has been for years, the way I sit most comfortably.

Right then, he started writing things in my chart, and told me to find a pain clinic and try Lyrica. Once I got my pen and paper, I was almost overjoyed to have a DIAGNOSIS to write down!

I've found support groups and forums for many different types of neuropathy, but never any on my specific ailment.

Again, I would never want anyone to go through this, but if there is someone who has been diagnosed with what I have, maybe, just maybe I can find, oh, maybe a common ground with someone. To discuss what works for them, what doesn't, what hurts more, hurts less, what meds have and/or haven't, etc.

Any suggestions? Thanks for making it this far in my babbling!

Faith...nice to connect with you again. I have chronic pain....but just not in the abdomen. Mine is located in my feet, knees, hands, back and well as having migraines. Very frustrating to not have a label to your pain. I sense that the medical establishment takes your pain more seriously when it's on paper with a name attached to it. It has become "real" to them. Many times I have had "the look"...the "It's all in your head/get a life" look. I have a recent locum doctor, as my reg. gp has had a heart attack and has greatly shortened his hours. This new doc is AWESOME! She is very thorough, and does not leave things hanging when she doesn't have the answer....she refers you. I saw her recently for a complete physical (hate those with a passion!). We reviewed my last lab tests. They had been requested by my reg. doctor. I discovered that I have 3 abnormal results....but was never contacted about them! The blood work had been done over 6 months ago! What the heck??
You can start a group yourself Faith...on THAT specific neuropathy, and see where it goes. I began a group here "Diabetes Plus" for those of us who have than diabetes to contend with....but it's not specific to one area. There's group here already re. neuropathy...but not limited to a specific area.
Let me know how it pans out...but in the meantime, keep in touch :)
luv and hugs....linda

you are 100% correct! When I got my diagnoses I seemed to get, well, maybe more respect?

I feel for you and your non diagnoses. I feel your pain, so to speak. It's terribly frustrating. Do you take Lyrica or Gabapentin? I started out on Lyrica, and switched to Gabapentin, slowly (most important thing there is slowwwwwly!!) If not, maybe you could consider asking if either would help. I'm thrilled that you have a new doc (they're referred to as PCMs - primary care managers - in the military world, fwi) that you like. It truly means more than worlds, especially when they really do have your life in their hands.

speaking of which, what the h. e. double hockey sticks is up with the abnormal results and not contacting you? have you pushed the issue? I get kinda mouthy in that area, primarily because being cared for in the military care facilities, you are often rushed, your doctors get assigned somewhere else and you have to start all over again, and, well, its a HUGE corporation when you think about all the active duty, retirees AND all their beneficiaries the insurance is in charge of. Sometimes you HAVE to stand up for yourself. Sadly, I'm really good at the realm of Tricare (US military's insurance company).

If nothing else, I hope they are addressing the issue! I care!

My neurologist diagnosed autonomic neuropathy when he was testing to see what was causing my dizziness. The primary symptom, in my case, is a big drop in blood pressure when I stand up. My BP can drop as much as 30-40 points. There is also pain all over my body due to nerve damage, and weak muscles. I have been a type 1 diabetic for 66 years, and I am lucky to have no diabetes related complications, except for mild nerve damage. I have not used any pain medications, but I have worked very hard to stabilize my blood sugar levels. In the last 10 years my A1c has been 6.1, or less. I have fewer highs and lows than I used to have, so my BG is more stable. This stability resulted in the neuropathy in my feet improving very much. I no longer feel any pain in my feet. Diabetes complications can develop even when the A1c is low. The trauma to the body caused by so many highs and lows can cause those complications, even though there may be a good A1c. When I had more stable BG numbers, and fewer highs and lows, my complications greatly improved.

There are many possible causes of stomach pain. One possibility is autonomic neuropathy (AN). Gastroparesis is common when AN is present, and that can cause stomach pain.

Oh, I'm certain my diagnosis is correct - finally! As bad as it sounds, I just wanted them to give me a name for it, regardless of what it was, just so we could move forward towards helping the situation.

My BSs are soooo crazy, regardless of how hard I try. It's self defeating at times, and other times I have to remind myself that I can't beat myself up over it.

I'd love to be able to reverse some of mine, considering I'm 'only' 43 and the thought of it only getting worse is, like above, something that I don't want to think about, but also something I have to accept, if it does happen.