Neurophathic Pain of the Abdominal Wall?

Type 1 and LADA
1

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!

2

Welcome. There are far too many of us who have a variety of neuropathies that we deal with. Some statistics suggest that 60-70% of us have some form of neuropathy. Although I am not familiar with neuropathy in the abdominal wall, there may be others who have heard of it.

I will tell you I believe that most neuropathies can be treated and in many cases reversed. I know that many doctors will tell you the damage is permanent, but whether you can be successful or not really depends on your conditions. At the very least, you can do things to manage your condition. It seems to be pretty well accepted that high blood sugars are the major driver behind neuropathy. So I would encourage you to redouble your efforts at blood sugar control, life is a marathon and perhaps it is time to get your second wind. Bernstein believes that when you normalize your blood sugar, you can heal from neuropathy, although it may take time, perhaps as much as 5 years to regrow nerves for peripheral neuropathy. There are also some supplements that may help, in particular things like Alpha Lipoic Acid (ALA).

I am sure others will chime in and make other suggestions and offer other help. But in any case, at the very least, the people here understand and support you in what you are going through. I'd encourage you to search the forums and peruse the groups, many of them touch on neuropathy. Again, welcome.

3

I am diagnosed as 'brittle', and my A1Cs are always horrible. this spring, my doc said that 'this is the best control you've had since I've been seeing you', and my A1C was still 7 something.

I shouldn't be surprised that I have some form of neuropathy, and I'm very thankful that I am not loosing my feet, or something along those lines, so I try very hard to be positive in that area. My vanity is rediculous at times.

I do try to 'fix' my blood sugars, and I really think I'd feel weird if they cured diabetes and my pump was gone, however, my control is, well, not controlled.

My pain clinic doctor (he's a jerk, but that's another story) confirmed my belief, it will only get worse as time goes on. At 43, that's tough to swallow, but we deal with what we have to.

I appreciate your time and thoughts. If you ever stumble across someone with similar conditions and think of me, please let me know! A 'hand to hold on to' as the song says, is worth more than words can say!

And again, I appreciate you offering your hand in assisting me, and welcoming me!

4

http://en.wikipedia.org/wiki/Richard_K._BernsteinThis is from Wikipedia

Bernstein's program for treating diabetes is highly regarded amongst his patients and achieves great blood sugar control, which reduces some or all of the complications associated with diabetes. The tradeoff is compliance with a very restricted diet and in many cases, frequent testing and insulin shots. Bernstein strongly opposes the dietary guidelines from the American Diabetes Association (ADA) for both type 1 and type 2 diabetics. His dietary recommendations are in contradiction to other diets.

my question:

does the ADA not approve of him or his practices??

is he on this site? I've noticed his name several times

5

I would never call you "brittle." I really don't like that term. I always like to think we can all work on improvement. You should be really proud of getting your A1c to 7% and I would encourage you to aspire to better control. You deserve it.

As to Bernstein, you are correct, he has been a focus of controversy for years. In particular, his frequent clashes with the ADA are legendary. But he was the first to do Self Monitored Blood Glucose (SMBG) and advocated tirelessly for SMBG to be a standard of care and covered by insurance. And then he invented the basal/bolus regime in 1972. All these things were in conflict with the ADA. But his most controversial recommendation is a low carb diet. It flies in the face of the traditional ADA teachings, but many of us find that a low carb diet really makes a huge difference in our control. And we increasingly find that there is strong evidence that he is right. You may never consider doing his full diet which is quite strict, but reducing carbs has helped many of us really improve control.

6

I completely agree with Brian in relation to Bernstein and the ADA. I seriously believe that if I hadn't come to this site and read Bernstein's books I would have major kidney problems by now. I follow his teachings and have seen great results. I must admit I have trouble sticking to a really low carb diet, but that is just me being me. We don't need a high carb diet and it does nothing but damage type 1's. I have reversed neuropathic damage by lowering my blood glucose. I have had times when I felt like my whole body was in pain from high blood glucose, but the only time I had abdominal pain was with ketones.

7

one of the things that made my eyes fly open was 'no fruit'

WHAT??

gosh, I can't even begin to imagine not having fruit. And not only that, with being on opiates for the abdominal issues, I don't even want to think about the bathroom issues that I might run into w/o fruit! *blush*

8

Bernstein doesn't recommend fruit, arguing that it is basically sugars and essentially devoid of nutrients. The key issue is to restrict carbs. Many who follow Bernstein still eat fruit, just in controlled quantities. I eat very little fruit, mostly berries. I still get plenty of fiber (fruit is actually a poor source of fiber) and eat lots of green veggies. I am a big fan of greens and eat lots of brocolli and cauliflower. I'd be happy to share some of my favorite recipes.

9

recipes rock!

with my belly issues, broccolli and cauliflower are NOT my friend, if you get where I'm going ;)

10

Actually you making sense, sometimes it takes someone else to mention the simplest of things that are affecting us the greatest, it’s just whether we will take a moment and listen to them. :slight_smile:

11

I had to cut way back on fruit, citrus especially and elimate fruit juices. I use fruit as a reward or on a seasonal basis without going to excess, especially with something that I love!

I tend to believe excess portions are more of a larger problem than fruit itself, for me anyway!

As for fibre - I get lots from veggies, oatmeal, etc…

12

ya know, the term brittle didn't bother me. the term diabetes was unspeakable at first! I called it the 'big d'. Seems silly now!

13

funny that your username is lostt, cause I am! which are you referring to? ;)

14

oh, and I learned the hard way that watermelon has LOTS of carbs! yowza!

15

lets just say i had a very rough time after i was branded T2 with the medical community - totaly abandoned in every sense - Lost was a very good ancroym for me at the time!

I'm slowly putting my notes together - way too much info from & there! at times i really do depise unverisity geography courses & mapping... grrr

At times lately, i feel as i'm back in boot camp with all this glorious running, dieting,etc without the "friendly" drill sarges whispering sweet plesant things in my ears while serving me fresh cooked powdered eggs on my plate for breakfast before assisting me with my morning exercises! :)

was buried in a genetics text other day reading an article on diabetes, facinating! something that caught my eye!

Lost is good! I learn more! :)

16

Yeah I used to be the world's biggest fruit lover. I adored fruit and I didn't realise just how much sugar was in it, you're quite right about watermelon. Would you enjoy salads and vegetables, it should help with the bathroom issues without the fructose problems.

17

oh yes, I love a good salad - just an apple, orange, etc is sure easier to pick up than making a salad
(did I mention I'm also lazy? lol)