Neuropathic Pain in upper midriff area

Posted by carol94 @carol94, Aug 14, 2016

Is there anyone out there who has been diagnosed with neuropathic pain? If so, in what part of the body do you experience this pain and what treatment are you given? Mine is in the high central area of my midriff. The pain worsens toward evening and is treated with Bentyl. I've also met one woman who has this type of pain in the jaw area/ My gastroenterologist tells me very little is known about it. I also have a seizure disorder. I would appreciate hearing from anyone out there who has this disorder. Carol94

Interested in more discussions like this? Go to the Neuropathy Support Group.

@hosta

I too have peripheral Neuropathy, only mine is in the left leg and foot. I also have restless leg, degenerative disc disease, kyphosis of thoracic region, COPD, OSA. The neuropathy is getting worse and the pain in my back is much worse. I am taking gabapentin, pramipexole. fentaNYL. Advair, albuterol, symbicort and am in the process of getting the machine for the sleep apnea. Things seem to be getting worse instead of better. I am wondering if some on the med. are doing it?

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@hosta, there is a lot of discussion about these medications in this discussion about Peripheral Neuropathy http://mayocl.in/2aWCYXq You may wish to read through it.

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@hosta

I too have peripheral Neuropathy, only mine is in the left leg and foot. I also have restless leg, degenerative disc disease, kyphosis of thoracic region, COPD, OSA. The neuropathy is getting worse and the pain in my back is much worse. I am taking gabapentin, pramipexole. fentaNYL. Advair, albuterol, symbicort and am in the process of getting the machine for the sleep apnea. Things seem to be getting worse instead of better. I am wondering if some on the med. are doing it?

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Thank you, did read it, I admit that it does confuse me. How do I get the doctors to do more testing. He just seem to say, you have it, deal with it. I see him on Monday and hope I get some answers. I have 3 main doctors, I don't think they communicate at all. Just more meds. I wonder if it is my age????

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@hosta

I too have peripheral Neuropathy, only mine is in the left leg and foot. I also have restless leg, degenerative disc disease, kyphosis of thoracic region, COPD, OSA. The neuropathy is getting worse and the pain in my back is much worse. I am taking gabapentin, pramipexole. fentaNYL. Advair, albuterol, symbicort and am in the process of getting the machine for the sleep apnea. Things seem to be getting worse instead of better. I am wondering if some on the med. are doing it?

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Sorry to hear about your troubles. Frustration is the rule when dealing with neuropathic pain so you have a lot of company.
Here's a link to diagnostic guidelines that might be useful:

http://peripheralneuropathycenter.uchicago.edu/learnaboutpn/evaluation/neuroexam/index.shtml

Do you have any diseases associated with neuropathy such as diabetes or an autoimmune disease?
Have you ever had an injury, such as a car accident, wherein you may have taken a hit to the spine or head?

At the end of the day you need a neurologist to do a full workup including a thorough bedside exam. If your neurologist is not taking you or your condition seriously, let him or her know that and see if you get them more focused. Failing that, find a new one.
What other 2 doctors are you seeing and are all 3 of them at the same clinic so they can easily share data?

Hope this helps

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That's a tough one Carol. Don't give up on it.
There are many flavors of neuropathic pain. Since your pain is in the "midriff" has it been established as neuropathic pain? In other words have other possible contributors been ruled out, such as cardiac and other organ problems?
Have you asked your doctor if this could be a side effect of any of your med(s)?
When is the last time that your seizure med(s) were reviewed and is your seizure disorder under control?
You probably know but there are 'abdominal epilepsies' that can cause localized pain. Uncommon but possible.
Abdominal pain may also be a feature of other epilepsies. Like everything else neurological, its complicated.

https://en.wikipedia.org/wiki/Abdominal_epilepsy

I'm not saying that's the cause of your problem but it probably should be considered.

Hope this helps.

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@hosta

I too have peripheral Neuropathy, only mine is in the left leg and foot. I also have restless leg, degenerative disc disease, kyphosis of thoracic region, COPD, OSA. The neuropathy is getting worse and the pain in my back is much worse. I am taking gabapentin, pramipexole. fentaNYL. Advair, albuterol, symbicort and am in the process of getting the machine for the sleep apnea. Things seem to be getting worse instead of better. I am wondering if some on the med. are doing it?

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Thanks John, No I am not diabetic, as far as an autoimmune disease, I don't know. I was in a car accident, and have had 3 spinal surgeries. I had shingles in the left let that didn't break out & as I understand it, went in. I also had the left hip replaced & surgery on the left shoulder. So all in all I think it all adds to it. I have had some of the tests mentioned in the article.

I have a G.P and a Pulmonary Specialist. They are in the same net work. The Neurologist is not.

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@hosta

I too have peripheral Neuropathy, only mine is in the left leg and foot. I also have restless leg, degenerative disc disease, kyphosis of thoracic region, COPD, OSA. The neuropathy is getting worse and the pain in my back is much worse. I am taking gabapentin, pramipexole. fentaNYL. Advair, albuterol, symbicort and am in the process of getting the machine for the sleep apnea. Things seem to be getting worse instead of better. I am wondering if some on the med. are doing it?

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Might be a good idea to get a neurologist who's under the same tent as the other 2, or minimally a second opinion from a neurologist at a world class clinic.
You're probably sick of them but an opinion from a world class orthopedic surgeon might be a good idea as well. The ones that have done loads of surgeries and have good reviews can read the spinal films better than other options. Might help guide the neurologist.
Have your pain meds been reviewed lately?

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@hosta

I too have peripheral Neuropathy, only mine is in the left leg and foot. I also have restless leg, degenerative disc disease, kyphosis of thoracic region, COPD, OSA. The neuropathy is getting worse and the pain in my back is much worse. I am taking gabapentin, pramipexole. fentaNYL. Advair, albuterol, symbicort and am in the process of getting the machine for the sleep apnea. Things seem to be getting worse instead of better. I am wondering if some on the med. are doing it?

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Thanks again. Yes the pain meds were changed from hydrocodone to Fentenayl 12 mcg/hr patch to 25 mcg/hr patch in March 2016. It still isn't getting it, but I still want to function. I don't want to be a zombi. There is to much living I want to do yet.

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@hosta

I too have peripheral Neuropathy, only mine is in the left leg and foot. I also have restless leg, degenerative disc disease, kyphosis of thoracic region, COPD, OSA. The neuropathy is getting worse and the pain in my back is much worse. I am taking gabapentin, pramipexole. fentaNYL. Advair, albuterol, symbicort and am in the process of getting the machine for the sleep apnea. Things seem to be getting worse instead of better. I am wondering if some on the med. are doing it?

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Your welcome. No problem. I've heard of people going up to 75 of fentanyl but tolerance varies incredibly. Hopefully you'll find a balance between pain control and QOL.

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@hosta

I too have peripheral Neuropathy, only mine is in the left leg and foot. I also have restless leg, degenerative disc disease, kyphosis of thoracic region, COPD, OSA. The neuropathy is getting worse and the pain in my back is much worse. I am taking gabapentin, pramipexole. fentaNYL. Advair, albuterol, symbicort and am in the process of getting the machine for the sleep apnea. Things seem to be getting worse instead of better. I am wondering if some on the med. are doing it?

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Boy me too! I really don't know how much more I can take! I is sure wearing me out. I'm not really depressed but could get that way if it not for my faith.

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I have had neuropathic pain since 1999 following spinal surgery. I am treated with Lyrica, Cymbalta and Ultram. The cocktail gives me an acceptable quality of life, but certainly not pain free. For six years prior to these meds I took Oxycontin, which could get above the pain. Despite all the bad press about Oxy being over prescribed, it was a valuable med for me. I never once felt a "high", just pain relief, but then I never abused the med, always following prescribed dosages. I found that dramatic changes in lifestyle were neccessary to reduce pain. I was a busy attorney with lots of daily stress (i became an adrenaline junky!) and found stress was like throwing gas on a fire, greatly increasing my pain and discomfort. I had to retire early from my busy practice, which I loved.<br><br>My advice for you is to try and reduce stress as much as possible, see if any meds help you (I tried quite a few from Mayo Pain Clinic, until we settled on my current meds), find time to rest and relax during the day, and consider learning biofeedback or meditation to help reduce pain, especially later in the day when the pain ramps up (yes, that is very common) and consider joining a support group. Good luck and best wishes. Feel free to ask questions.<br><br><br><br>

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