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

@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?

Liked by hosta, Eve

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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.

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.

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@evoglider

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.

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.

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Thank you for the information. I will ask my neurologist about changing the meds off of Fentanyl. There has to be something out there that will work better for me.

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@colleenyoung

Welcome @carol94 @patreats5674 and @xottawan.
I encourage you to read the messages in this discussion about Peripheral Neuropathy http://mayocl.in/2aWCYXq To quote @johnwburns from that discussion: “There are many possible causes of peripheral neuropathy, such as diabetes, B12 deficiency, certain drugs, autoimmune disease etc but you’ll need a thorough workup to get to a root cause. It may still be spinal but that is TBD. Here is a good article that goes into causes and requisite testing: http://www.todaysgeriatricmedicine.com/archive/070912p14.shtml

I’d also like to bring @bobsconnect @salena54 and @johnbishop into this discussion. @juneia @workwithkids do you have information to share with Pat about Elavil?

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Agree with @johnwburns. AS an elderly person, I probably have a decrease in B12 absorption, and when I mentioned I had mild peripheral neuropathy symptoms, my internost obtained a serum B12 level—and it was decreased (I’m 84). I started on sublingual B12 and in a very short time the level was back to normal. Fortunately B12 has no side-effects and is completely safe at almost any dose. And it is stored in the liver; so it may take a while for a deficiency to show up (say, after becoming a vegan, as I did for nearly a year when I was 75). As a gastroenterologist, I am also aware of the many GI causes of B12 deficiency; so the advice to get an evaluation is sound. BTW, the mild peripheral neuropathy (mild numbness in parts of the feet) is still there, but I take the b12 anyway….

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@colleenyoung

Welcome @carol94 @patreats5674 and @xottawan.
I encourage you to read the messages in this discussion about Peripheral Neuropathy http://mayocl.in/2aWCYXq To quote @johnwburns from that discussion: “There are many possible causes of peripheral neuropathy, such as diabetes, B12 deficiency, certain drugs, autoimmune disease etc but you’ll need a thorough workup to get to a root cause. It may still be spinal but that is TBD. Here is a good article that goes into causes and requisite testing: http://www.todaysgeriatricmedicine.com/archive/070912p14.shtml

I’d also like to bring @bobsconnect @salena54 and @johnbishop into this discussion. @juneia @workwithkids do you have information to share with Pat about Elavil?

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Sounds like a happy ending. Good to hear.

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Thank you so much for your considerate and detailed reply. I, too, have found stress feeding the pain. I retired, took up meditation, and joined a support group. I have had many lifestyle changes as well. The unusual aspect of my condition is that it did not follow a surgery. Years ago it felt like a gnawing sensation and gradually, over years, became a very severe pain. I am on an antispasmodic drug (Bentyl), Ativan at bedtime and an occasional Vicodin. I have to be very strict in my regimen of medication times and what I eat, when I eat, and how much I eat. I was curious as to how my case compared with others as I know no one here who has this pain. There are some commonalities with your condition. I appreciate your taking the time to write.

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THIS IS A GREAT FORUM. I TAKE PAXIL. IT HAS HELPED A GOOD BIT.

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Hi everyone. Haven’t been on for a while, I would like to bring you up to date on what is happening in my life. I did have an appointment with the neologist. He made appointments with a pain doctor and an orthopedic doctor. I saw the nurse physician assistant, we didn’t click. 1st she talked so fast that I couldn’t keep up with her. Then she looked at my medication allergies. & said ‘well if you aren’t willing to try some of these, then there is nothing I can do’ I told her that if I use a zofran suppository before the pain meds. then I can take them. She said she didn’t use suppositories just the pill. She put me on traMADol HC 50mg. If I take a whole one, it puts me to sleep, and I can’t wake up, so I cut it in half. I still sleep to much with it. I am suppose to see the Doctor next time in November…..?

I saw the Orthopedic yesterday for my hip. I had a x-ray. He has ordered a aspiration to see if there is a infection and a bonescan. He said I also had a pelvic fracture. He understood that I hurt and wanted to find out why! So….I will see.

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