[FaithR]

Am I REALLY the only patient that has been diagnosed (University of Alabama, Birmingham) with Neuropathic Pain of the Abdominal Wall?
I cannot even find anything online that truly describes what I have.

As much as I'd never want anyone to have what I have, sometimes it would be wonderful to have someone else to talk to about it, discuss what works for one, or is helpful NOT to do, that sort of thing.

I have had Type 1 Diabetes for about 19 years now. It took several years to get the correct diagnoses of "Neuropathic Pain of the Abdominal Wall", which I can only describe as this: every muscle in my abdomen is affected by my neuropathy, and causes pain. It is sometimes controlled by gabapentin (900 mgs 3 times a day) and a 25 mg fentanyl patch.

I'm not even certain it IS neuropathy. I do not have it anywhere else.
My pain clinic dr does not believe this is what I have, and is threatening to take me off everything when I ask if there are any other options, or other medications to try.

The only other pain clinics in the area are approximately 1 1/2 hrs away. I truly feel alone and trapped within my pain clinic doctor.

Any suggestions?

[ginnie]

Welcome to Neuro Talk. I have not heard of this. Maybe the seach bar up at the top will have something on the neuropathy forum. Have you considered going somewhere like Mayo clinic?. I would not want for myself, to feel I had only one choice. I am sorry this happened to you. I do hope that you can get some resolution and get better. ginnie

[SandraLAVixen]

Can you describe the pain? is it isolated to that area? skeletal muscles or smooth muscles? does it hurt constantly, how intense? Do certain foods trigger pain? Do certain activities trigger pain? Was it acute?

I'm currently having a similar acute non-classic abdominal pain and under going test after test, so far nothing... I know how frustrating it is, I've literally seen over 20 doctors (and I'm in Los Angeles).

[Leesa]

I "googled" neuropathic abdominal pain and i came up with this site:

www.medhelp/org/posts/neuropathic

You might visit this as this woman seems to have the same thing. Under her post, a doctor answers her with some suggestions that perhaps you might be able to use. I hope this helps. God bless. Hugs, Lee

[mrsD]

I wonder if you have shingles pain. This can affect the dorsal root ganglia along the spine.

If you had chicken pox as child, it is a possibility. There is a special MRI that will show this:

http://neurotalk.psychcentral.com/thread147771.html
This thread explains the test, and also what the dorsal root ganglia are. Once damaged, they send signals to the brain which are often phantom in origin. Some people do not genetically have the capacity to heal injury to this nerve bundle that is outside the spinal cord, along the vertabrae. So a chronic pain condition develops.

Placing Lidoderm patches along the spine can often turn off some of this pain. Sounds like it is a thoracic area problem.

At least if you have a diagnosis your doctors would be satisfied as to your continued pain management I would think.

Typically diabetics can be low in magnesium, as they lose it thru the urine, daily, for some unknown reason. So taking some magnesium supplements, may help this. Use a chelate and aim for 1/2 the RDA, which is about 200mg elemental.
Oxide form does not work.
This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

We've had some posters on our Peripheral Neuropathy forum, have a reduction in pain, when using magnesium properly. You can also choose to eat foods high in this critically needed mineral.
You could also be low in B12 and Vit D...so getting tested for that may reveal a way to lower your discomfort with supplements.

This is our PN forum:
http://neurotalk.psychcentral.com/forum20.html
There is alot of information posted on that forum that we have collected over the years. Most doctors have no clue about it either.

[januarybabe]

I have PN of abdomen. The pain has now speed to other areas of body mainly my legs. I am on 2700 mg gabapentin, 100 mg Tramodol, and Lidoderm patch. Mine is idiopathic. I do not have diabetes.

I made changes to lifestyle. I am a female age 64. I wear mainly dresses that are easier on waist. Use travel size pillow between abs and car seatbelt.

Mrs. D, I have had shingles twice. Could shingles virus cause this much overall pain?

[mrsD]

Yes, I think shingles is a main cause of chronic damage to the dorsal root ganglia along the spine.

Originally Posted by januarybabe

I have PN of abdomen. The pain has now speed to other areas of body mainly my legs. I am on 2700 mg gabapentin, 100 mg Tramodol, and Lidoderm patch. Mine is idiopathic. I do not have diabetes.

I made changes to lifestyle. I am a female age 64. I wear mainly dresses that are easier on waist. Use travel size pillow between abs and car seatbelt.

Mrs. D, I have had shingles twice. Could shingles virus cause this much overall pain?