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Old 03-17-2012, 10:00 AM   #1
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Wink Chronic Burning Pain (Visceral Hypersensitivity)

So I'm posting up here for one purpose alone, to try and help others that deal with the everyday torture of on going burning stomach pain. Maybe what I have learned will help someone else. My stomach issues began about 7 years ago out of the blue. Before then I had a rock of a stomach, never any problems. At this time in my life however, my stress level was really at a peak. I had battled with anxiety disorder and panic attacks before this time, but had gotten beyond that. I had chosen to hold my stress in and not allow myself to have anxiety attacks any longer. I was trying to plan a wedding, build or buy a home, and adjusting to a newer supervisory position at work. And on one of those days that year I started getting burning pain in my stomach every time I would eat. My first thought was, I must have an ulcer. My family physician agreed since I had no stomach issues prior and two of my family members had a history of that. I was introduced to the PPI. I hate medication and I never take anything or go to doctors unless I have to. The PPI helped but everytime I was off of it my symptoms came right back. So at my request he treated me with 2 heavy rounds of antibiotics along with the PPI hoping to kill h. pylori if that indeed was perpetuating my symptoms. I was deathly scared to have a scope done, so he didn't make me. Nothing, he gave me was eradicating my issues. So then, it was well, you have acid reflux disease. I continued trying to wean myself off the PPI everyday, and everyday no avail. The pain I experienced would always make me go back to taking my PPI. Two years into this cycle I got fed up. I was depressed, my PPI only worked partially, and even though I was taking them it seemed as if I was getting worse. So I tried going to a different family doctor. He examined me and due to some added pain in my shoulder blades now and pain in my upper right quadrant after the exam he gave me, he said I should have my gallbladder checked for issues. In the days following, my upper right quandrant kept hurting to the point where I could not go to work and stock shelves anymore. An ultrasound revealed no stones. He then told me to get a Hida Scan done to check the function of my gallbladder. Results were that it was only working between 4-8%!! So I thought well this really sucks, I took care of myself, ate healthy, did not drink, did not smoke, and at the age of 32 I would have to face my first surgery. I was scared to death but I couldn't work and I wanted more that anything to get better. When you wake up everyday with burning pain in your stomach it eats at you in every way, physically, spiritually, mentally.....
So I did it, I got my gallbladder removed. And felt somewhat better....no upper quadrant pain, no shoulder blade pain, not as much burning in my stomach but I took it easy on my diet too. And then about 30 days later I ventured to eat 2 chili dogs. I couldn't finish them, burning pain was back, and I was so upset I started crying. I questioned everything, why me?? After all of this 5 years later still can't feel normal and enjoy something normal like normal people?? So back on the PPI's I went. I would have tangents when I would go off of them for a couple weeks or a month but eventually the PPI would win and take me prisoner again. I didn't want my body dependant on them. So I went back to the surgeon who took my gallbladder out and told him how I was feeling....his reply.........oh it's stress. Really??? Is that all?? I told him the only thing stressing me out is that no one can tell me what is wrong with me!! So I went through more anger, depression, and gave up again. And then I finally decided I had to go get the scope done. I was just as scared of that as my surgery but I needed answers and wellness and peace of mind and consolation. So my doctor did the scope and I didn't know what hit me when it happened because I told him to drug me up!! It was kind of fun cuz I couldn't remember **** and I was loopy when I came out of it. But as high as I felt, these words brought me right back down to earth....." We didn't find anything, you have a perfectly healthy stomach, we didn't even find physical evidence of acid reflux." And I sat there and finally said even though I was out of it, " What do you mean there is nothing wrong?? I've been sick all this time??" And then a wave of guilt hit me and I apologized to God because after all nothing wrong was the best news I could get but.......I wasn't accepting it.
So another year went by, no improvement. I decided I would suffer for life with whatever this was. It was hard. And I fall down, but I always try to get back up. God didn't put me here to give up and I know that. So I thought, I'm almost 34 years old, no kids, and I don't think I would even want to carry one feelin like this everyday. I just accepted it. And then I went to my routine gyno exam. My doctor asked me if me and my husband were wanting to start a family. I told her no and why. She wanted me to go see her affiliate who is a gastroenterologist. I told her, "I dunno, they don't listen to me, they tell me it's stress and I'm healthy and I can't afford anymore answers like this. With the economy, I'm pretty broke". She convinced me to go anyway. I went to him a couple weeks later. He looked over all I had been through. He told me everything had been ruled out except for a condition called "visceral hypersensitivity". I never had heard of it?? It is nerve pain of the stomach, esophagus, intestines. Your digestive tract is like in hyper mode and doesn't want to shut down after you eat or when ur stressed. Certain foods and too much stomach acid can aggravate it. This condition can be treated with low dose antidepressant and the side effect is that it calms the nerves down in your stomach. So I was a sceptic but I tried the medication. The medicine makes u tired, especially when you first take it, your body has to have time to adjust, but I noticed pain relief right away. In fact you have to take it for 2 weeks before it will take full effect in your body. I work third shift so it's pretty hard taking a pill that makes you sleepy but my body does seem to adjust. And this past year I have felt better than I have in 7 years! Praise God!! I had in the past, gotten to a point where I couldn't eat anything tomato, citrus, pop, or caffeine and now I can even enjoy those things in moderation. I'm not on a PPI anymore. Sometimes I will pop one on a day of stress as stress effects me. Most of the time an occasional tum will do the trick if the burning begins. I'm much happier. My only concern is now that the Amitryptiline I'm on isn't safe for pregnancy, as I'm reading online. I take the lowest dose out there. Any input on that would be helpful. I dunno maybe I'll adopt! My quality of life and my daily functioning is back and I'm thankful for that!! Please let me know if my very long thread helps anyone. Don't give up, don't accept what every doctor tells you, follow your heart, and don't quit praying!I just got the internet, so I'm trying to make use of it!! God bless!!

Last edited by BiancaB97; 03-22-2012 at 10:22 PM.

 
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Old 03-18-2012, 08:54 AM   #2
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Re: Chronic Burning Pain (Visceral Hypersensitivity)

Hi BiancaB97,
I enjoyed your long thread very much!! When I started reading your post my eyes started to water cause I thought I was the only one suffering from this horrible "abdominal pain"! I've had an endoscopy, ultra sound, been to two GI doctors and have taken numerous medications and nothing was successful. I was even treated for h. pylori, this was very depressing I just wanted some hope. But now that I've read your post I finally feel some hope again! Although I felt I like I was done wasting money and energy at the doctors I would like to go once more to suggest they look into this method. Thank you so much again!!

 
Old 03-18-2012, 01:34 PM   #3
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Wink Re: Chronic Burning Pain (Visceral Hypersensitivity)

Hi aaalvarez4,
I'm glad my very long thread helped you in some way. I figured if I didn't explain everything it wouldn't help others as much. This visceral hypersensitivity issue is more common than you think. The doctors are however still learning about it. My doctor sees approximately 7-10 people a week with this problem. This amazed me because I had never heard of it nor met anyone who had it. And I did so much research and had tried so many natural supplements through the years too. I find that sometimes when my stomach is upset I will get acid reflux type symptoms and bloating....it's all part of the nerves being overactive or agitated.....you let me know how things turn out for you. As far as a lot of doctors go, they are perfectly happy to keep dishing out those PPI's.....but the underlying issue needs to be addressed............feel better soon for me!!

 
Old 03-18-2012, 01:47 PM   #4
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Re: Chronic Burning Pain (Visceral Hypersensitivity)

Bianca, thanks for sharing.

I am on nortriptyline (similar to amitriptyline) for another condition. Here's what my doctor said about pregnancy:

The most delicate stage of fetal development is months 2-4, when primary brain development takes place. So, when I get pregnant (next year I hope!) I will quit taking it as soon as I get a positive pregnancy test, then start again when I reach month 5.

Good luck!

 
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Old 03-18-2012, 02:29 PM   #5
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Re: Chronic Burning Pain (Visceral Hypersensitivity)

Your symptoms and story sounds like mine expect I'm 19 lol. I'd read about this before but I'll have to look into it some more , the burning stomach pain is by far my most bothersome and common symptom. Around the time this developed I was extremely stressed with another health issue. I'd be very skeptical to start taking anti depressants at my age though , I'll have to mention it to my doctor and see what he thinks ( probably tell me it's all in my head lol ! ).

Last edited by IWILLGETBETTER; 03-18-2012 at 02:30 PM.

 
Old 03-19-2012, 07:42 AM   #6
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Re: Chronic Burning Pain (Visceral Hypersensitivity)

Thank you for the useful info on taking meds during pregnancy, appreciate it!!

 
Old 03-19-2012, 07:48 AM   #7
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Re: Chronic Burning Pain (Visceral Hypersensitivity)

Keep in mind that visceral hypersensitivity is treated with the lowest dose of only a couple anti depressants. I am on 10 mg of amitryptiline a day. This low dose is not enough to treat depression or anything like that. They discovered however that a side effect of this medication is that it helps visceral hypersensitivity of the stomach. So if your physician puts you on it, he or she will be treating your stomach, not any depression or emotional issue.......

 
Old 03-26-2012, 07:21 PM   #8
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Re: Chronic Burning Pain (Visceral Hypersensitivity)

Hi BiancaB97,
I am on 25 mg of amitriptyline, going on 3 days. My doctor is aware of my struggle so was willing to try it. He hesitated when I mentioned what kinda of antidepressent as it might cause weight gain, something that I am also struggling with... I feel like I can tell the difference as the pain is not so frequent but I can still feel the burning, especially if I eat something that triggers it. It is not as painful but it still lingers for hours. The doctor said I can take two, so I think I am going to do that and see if it gets any better! Thanks again for your helpful advice And good luck with your journey!

 
Old 03-29-2012, 11:16 AM   #9
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Re: Chronic Burning Pain (Visceral Hypersensitivity)

Hi aaalvarez4,
I really hope the amitriptyline works for u. I don't really understand why your doctor put u on such a high dose from the start. As I said before, I'm only on 10 mg which is the lowest dose out there once a day. U will struggle with a lot of fatigue which is why he is probably saying it might cause weight gain......but 25 mg is really gonna make u tired. My stomach burned all day everyday too, so I feel he should cut u back to 10mg and see how that works. It will take at least 2 wks for the medication to take full effect. It has to build up in your body. It may even take 3 wks. U shouldn't need 2 pills a day!! If u r coming off of acid reducers like Nexium or Prevacid.......u will have some acid rebound until your body adjusts so really watch what u r eating for the first few weeks. I'm here to help u anyway I can! And one more thing.........I gained more weight laying around not feeling good than when I began taking this medicine. When u feel better u will become more active......tell that to your doctor!!

 
Old 03-29-2012, 08:38 PM   #10
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Re: Chronic Burning Pain (Visceral Hypersensitivity)

Hi BiancaB97,
I told my doctor it was a low dosage but he gave me that 25mg. I am only taking one each night and its not making me too tired. If I can get in enough sleep in I am good. I did'nt think I was "addicted" to the PPIs but now I am finding it difficult to only take one a day How long have you been on the amitriptyline? I would like to finish the amitriptyline the doc gave me and take it from there... I just need to remember that even though I obvisouly can't get rid of whatever this is I can still try something else! I've been suffering from this for about 8 months now and still can't imagine having to live with this for the rest of my life!

 
Old 04-01-2012, 06:27 AM   #11
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Smile Re: Chronic Burning Pain (Visceral Hypersensitivity)

Hi aaalvarez4,
I have been on the amitryptiline for almost a year. When I've felt really good I've even done a couple months off of it. But eventually stress or something I eat can kick up my issues and then I go right back on it. Coming off the PPI for me was the hardest part of going on the amitryptiline for me. I had been on 1 Nexium a day for almost 5 years!! When u take that PPI it is blocking acid production in your stomach. So as u ease off your dose ur stomach is going to over compensate acid for awhile which in turn is going to hurt those sensitive nerves in your stomach. It took me a good couple weeks to start feeling really good. I watched to not eat acidic foods, caffeine, chocolate......anything hard on your stomach. Keep your stress and worrying under control also....that's just as bad as eating bad foods if not worse. Also I sware by eating pickles and apples......both are natural balancers that will balance out your stomach acid. When u wake up in the morning try taking a Zantac or a dose of Tums before u even start eating. That will help with the rebound from the PPI. I felt the best if I ate an apple for breakfast. My first meal was always the hardest. With time I think u will start feeling better and better. Fresh foods will set the best on your stomach when its iffy I feel. Usually by lunch I could eat something more solid without much trouble at all as long as I stuck with that fruit in the morning. I dunno about u, but for me, my stomach always hurt the worst when it was empty in the morning. Try all of these things and let me know if they help! I hope u r feeling somewhat better. People just don't understand how hard it is to get off of the PPI's once ur on them. Most people I know on them have no intention of ever getting off of them but taking them only buffers the problem. Hopefully u will get a solution in the new medication ur on!!

 
Old 04-04-2012, 08:58 AM   #12
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Re: Chronic Burning Pain (Visceral Hypersensitivity)

What medication are you on if you don't mind me asking? I feel like I have the same condition because what I have is an almost constant burning no matter whether I eat or not.

Rosebloom

 
Old 04-04-2012, 11:16 AM   #13
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Re: Chronic Burning Pain (Visceral Hypersensitivity)

Hi rosebloom
I am on amitryptiline 10 mg once a day If u refer to my previous posts there is a lot of history on my symptoms and what led up to my diagnosis. Hope some of my info can help u cuz it is miserable to deal with........

 
Old 05-31-2012, 12:12 PM   #14
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Cool Re: Chronic Burning Pain (Visceral Hypersensitivity)

Quote:
Originally Posted by BiancaB97 View Post
So I'm posting up here for one purpose alone, to try and help others that deal with the everyday torture of on going burning stomach pain. Maybe what I have learned will help someone else. My stomach issues began about 7 years ago out of the blue. Before then I had a rock of a stomach, never any problems. At this time in my life however, my stress level was really at a peak. I had battled with anxiety disorder and panic attacks before this time, but had gotten beyond that. I had chosen to hold my stress in and not allow myself to have anxiety attacks any longer. I was trying to plan a wedding, build or buy a home, and adjusting to a newer supervisory position at work. And on one of those days that year I started getting burning pain in my stomach every time I would eat. My first thought was, I must have an ulcer. My family physician agreed since I had no stomach issues prior and two of my family members had a history of that. I was introduced to the PPI. I hate medication and I never take anything or go to doctors unless I have to. The PPI helped but everytime I was off of it my symptoms came right back. So at my request he treated me with 2 heavy rounds of antibiotics along with the PPI hoping to kill h. pylori if that indeed was perpetuating my symptoms. I was deathly scared to have a scope done, so he didn't make me. Nothing, he gave me was eradicating my issues. So then, it was well, you have acid reflux disease. I continued trying to wean myself off the PPI everyday, and everyday no avail. The pain I experienced would always make me go back to taking my PPI. Two years into this cycle I got fed up. I was depressed, my PPI only worked partially, and even though I was taking them it seemed as if I was getting worse. So I tried going to a different family doctor. He examined me and due to some added pain in my shoulder blades now and pain in my upper right quadrant after the exam he gave me, he said I should have my gallbladder checked for issues. In the days following, my upper right quandrant kept hurting to the point where I could not go to work and stock shelves anymore. An ultrasound revealed no stones. He then told me to get a Hida Scan done to check the function of my gallbladder. Results were that it was only working between 4-8%!! So I thought well this really sucks, I took care of myself, ate healthy, did not drink, did not smoke, and at the age of 32 I would have to face my first surgery. I was scared to death but I couldn't work and I wanted more that anything to get better. When you wake up everyday with burning pain in your stomach it eats at you in every way, physically, spiritually, mentally.....
So I did it, I got my gallbladder removed. And felt somewhat better....no upper quadrant pain, no shoulder blade pain, not as much burning in my stomach but I took it easy on my diet too. And then about 30 days later I ventured to eat 2 chili dogs. I couldn't finish them, burning pain was back, and I was so upset I started crying. I questioned everything, why me?? After all of this 5 years later still can't feel normal and enjoy something normal like normal people?? So back on the PPI's I went. I would have tangents when I would go off of them for a couple weeks or a month but eventually the PPI would win and take me prisoner again. I didn't want my body dependant on them. So I went back to the surgeon who took my gallbladder out and told him how I was feeling....his reply.........oh it's stress. Really??? Is that all?? I told him the only thing stressing me out is that no one can tell me what is wrong with me!! So I went through more anger, depression, and gave up again. And then I finally decided I had to go get the scope done. I was just as scared of that as my surgery but I needed answers and wellness and peace of mind and consolation. So my doctor did the scope and I didn't know what hit me when it happened because I told him to drug me up!! It was kind of fun cuz I couldn't remember **** and I was loopy when I came out of it. But as high as I felt, these words brought me right back down to earth....." We didn't find anything, you have a perfectly healthy stomach, we didn't even find physical evidence of acid reflux." And I sat there and finally said even though I was out of it, " What do you mean there is nothing wrong?? I've been sick all this time??" And then a wave of guilt hit me and I apologized to God because after all nothing wrong was the best news I could get but.......I wasn't accepting it.
So another year went by, no improvement. I decided I would suffer for life with whatever this was. It was hard. And I fall down, but I always try to get back up. God didn't put me here to give up and I know that. So I thought, I'm almost 34 years old, no kids, and I don't think I would even want to carry one feelin like this everyday. I just accepted it. And then I went to my routine gyno exam. My doctor asked me if me and my husband were wanting to start a family. I told her no and why. She wanted me to go see her affiliate who is a gastroenterologist. I told her, "I dunno, they don't listen to me, they tell me it's stress and I'm healthy and I can't afford anymore answers like this. With the economy, I'm pretty broke". She convinced me to go anyway. I went to him a couple weeks later. He looked over all I had been through. He told me everything had been ruled out except for a condition called "visceral hypersensitivity". I never had heard of it?? It is nerve pain of the stomach, esophagus, intestines. Your digestive tract is like in hyper mode and doesn't want to shut down after you eat or when ur stressed. Certain foods and too much stomach acid can aggravate it. This condition can be treated with low dose antidepressant and the side effect is that it calms the nerves down in your stomach. So I was a sceptic but I tried the medication. The medicine makes u tired, especially when you first take it, your body has to have time to adjust, but I noticed pain relief right away. In fact you have to take it for 2 weeks before it will take full effect in your body. I work third shift so it's pretty hard taking a pill that makes you sleepy but my body does seem to adjust. And this past year I have felt better than I have in 7 years! Praise God!! I had in the past, gotten to a point where I couldn't eat anything tomato, citrus, pop, or caffeine and now I can even enjoy those things in moderation. I'm not on a PPI anymore. Sometimes I will pop one on a day of stress as stress effects me. Most of the time an occasional tum will do the trick if the burning begins. I'm much happier. My only concern is now that the Amitryptiline I'm on isn't safe for pregnancy, as I'm reading online. I take the lowest dose out there. Any input on that would be helpful. I dunno maybe I'll adopt! My quality of life and my daily functioning is back and I'm thankful for that!! Please let me know if my very long thread helps anyone. Don't give up, don't accept what every doctor tells you, follow your heart, and don't quit praying!I just got the internet, so I'm trying to make use of it!! God bless!!

 
Old 05-31-2012, 12:26 PM   #15
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Re: Chronic Burning Pain (Visceral Hypersensitivity)

So glad that I read your post. My symptoms have been similar spanning 30 years and being made to feel like I was a hypochondriac or crazy woman. Yesterday I was seen by a Gastroenterologist who immediately from my history and all previous examinations suggested that it was visceral hypersensitivity. I even got worse on the PPI's which I was told that no way was it them. I have problem got oesophageal spasms too but the pain, tiredness, feeling so unwell has at times been so awful, but like you I have tried to work through every episode determined that it was not going to take away my life. There were times I tried to persuade myself it was all in my head, but I knew it wasn't.
The gastroenterologist said that visceral hypersensitivity is real and that more research is being undertaken. I am now just waiting on a few more tests and then they are going to trial me on the anti-depressants something that I would never have wanted to be on but this time round the pain has been bad for 4 months solid and has hospitalised me for almost a month and made me miss work. I want my life back and at last I think i have an answer and someone who says they know it is real What has been a trigger to episodes of pain has been changes in my hormones, this time I have hit the menopause and the changes are bigger.

 
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