Please help me - atypical GERD-symptoms for almost two years now

Hello

I really would love it if some of you would help me find out what I'm suffering from. I'm 34 and except for my symptoms (which are really tough to deal with at times both physically and mentally) I'm healthy. These are my three primary symptoms:

1. Breathing pain - increased when exercising, feels a bit like when breathing after eating strong mint-candy, it’s worse in the morning.
2. Sore throat sometimes exacerbated from being in motion (driving a car, rollercoaster...)
3. Sore/burning back not increased when exercising, but when sitting in the same position especially with my upper bode slightly leaned backwards in a sofa. It gets better when I lean my body to the side resting on the armrest and it gets better when I walk. Also it's not comfortable lying on my back so I sleep on the side.

It all started in November 2012 with a feeling of a sore throat. I thought I had an inflammation. I didn't really worry about it, but it didnt go away. Then in January '13, when I was jogging, for the first time I had a symptom which is now my primary concern: I noticed a little bit of pain when breathing deeply. Also around December/January I started feeling a little bit sore around my spinal chord between the shoulder blades, especially when sitting down.

These symptoms grew until in the end of March when I was on a skiing holiday and the breathing pain + sore throat increased a lot. It also hurt behind my chest bone. The sore throat/breathing pain was waking me up hours before the others. It also hurt in the first hours as I started skiing but gradually got better during the day until I woke up early next morning again. My mother is a pediatrician and suspected heartburn, so on the last day of skiing I bought both PPI's and antacids. Pain increased especially the sore throat, but the breathing issues slowly declined in the weeks and months after the skiing trip. Actually it took me months of trying out different PPI's to discover in around october '13 that the PPI's as a side effect where giving me an increased sore throat (sometimes almost unbearable). I then tried h2 blockers but they didnt help and when I quit them I noticed that it immediately made my back burning much worse. This back burning slowly decreased within a week after quitting H2blockers (maybe a rebound effect). Also I seem to get heartburn-rebound from quitting the PPI's. Before I started PPI's I didn’t have noticeable heartburn (maybe every half year or so and always when hung-over).

In September I had a 24-hour acid-test that showed 8% reflux (normal is up to 5%). However I suspect this acid-test as being inaccurate since I physically felt heartburn when I quit the PPI's 5 days ahead of the 24-hour acid-test. This I never really felt before so I attribute that to a rebound effect from quitting PPI’s. Also I ate half a liter of ice cream since the doctor told me to eat something that would provoke heartburn, so maybe this also made the heartburn rise above the 5% that is normal.
Around October ’13 I had to stop jogging/doing sports because of my breathing pain.

I’ve had 3 gastroscopies that showed nothing in my esophagus or stomach.
Pulmonary doctors made me do a lung capacity tests which where painful but showed that my lung capacity was above average. I had a test where they made me inhale 2 different materials to see if I had asthma(even more painful), they also put a camera down my throat filming me while I was running. Everything normal. I’ve had three throat-docs look at my throat. Two of them finding nothing - the 3rd says I have slightly swollen vocal chords, maybe from acid getting into them.

I haven’t used PPI's since April ‘14, and in the beginning I had the usual heartburn-rebound, but now I hardly feel the heartburn any more. I have followed the usual reflux-advice for a year: elevated bed, no chocolate, citrus, tomato, alcohol or coffee. I stopped smoking 8 years ago, and I’m not overweight.

My back is hurting but the worst is this bloody breathing pain/sore throat. Since mid-august '14 the breathing pain has started to appear also when I’m not exercising. THis is really concerning. It sometimes gets better during the day though.

I would really appreciate your opinion. I know you may think that I have seen so many docs that they should know, but please give me your opinion. Maybe they missed something. Have you heard of someone like me?

I really want to live this otherwise lovely life, I want to love my girlfriend and my amazing one year old boy (yes I’m sobbing right now…) but these symptoms are making it increasingly harder to do that and to be there for them.

I am a new member to but would like to give you a little bit of the experience I have had over 40 years with this ugly condition which doctors seem to Poopoo as a minor irritation in your life in respect to all of the huge medical problems that one could have. I started reading the blogs today because I am having such a bad attack. One that I have not had in quite some time. Yes they can all have the horrible symptoms of tightening chest, swallowing difficulties, burping pain in the back down the shoulders etc., that 11 doctors and God knows how many ER visits later, I tend to believe after this last year that diet is one of the biggest contributing factors.... But after reading most of these blogs I have yet to have seen anybody really emphasize stress.... Which my recent Dr. brought to the table as a very big factor and unfortunately one that causes a vicious cycle.

I have had mine for so long that it has done some minor damage and I no longer do great burps and chest pain or shortness of breath, but vicious back pain and burning at the neck tightness around the shoulders very very sore throat almost raw... And a stiff neck. While my old docs thought this was a little ridiculous my new one has explained to me that I am getting so stressed that I am not sleeping at night and even during the day I am keeping my body in a constant state of tightness. Well being a female and turning 60 when you have these symptoms you either go to the ER or take it into your own hands and wonder if you're being stupid not going because it's typical for a female to have the symptoms with a heart attack. But I am sure most of you reading this will agree with me we would have to have a revolving door to the ER if we went every time this happened.

But I digress. Back to my story last year I decided to do exercise in the water because I cannot do it any other way, change my diet no gluton, cheese or milk products. No heavy meats to digest unless it's a celebration. Simple morning drinks of greens and fruits that I make (can never eat these raw any other way), no chocolate no carbonated beverages. Along with this and the suggestion of my new doctor, I started having massages as often as I could afford them to relax me. I lost 55 pounds, started singing again I had stopped because of my sore throats, felt wonderful and did not have an attack for about eight months while I was doing this. I did continue my AcipHex drug and the only tea I drink was natural green tea.. I did wonderful until I fell and hurt my hip and was bedridden almost completely for 3 to 4 months and had my husband bring me my food in bed which consisted of drive-through. Now I am having attacks again constantly am on a walker and cannot get in the water to do my exercises can barely get around to fix my drinks and have gained 20 of my pounds back. So before you do surgery or become too panicky thanking you may have cancer or some strange disease because the pain does get that bad... If you are mobile try this. Yes exercise does increase the symptoms in the beginning but not if you stick with it... But in all seriousness though, find something that gives you relaxation. Be it play guitar take up painting, massages if you can afford them but something. I have wasted way over 30 or 40 years of my life with this monkey on my back. I don't believe there is a medicine that will take care of it, help maybe, but the natural eating the exercise and the relaxing...is worth a try.... And I am starting all over again in the morning with a Ywca that has a chair that lifts you into the water.... Sorry to ramble on so but there isn't a test I have not had a doctor I have not seen or 1 million visits I have not made to the ER. If you have any questions don't hesitate because I would love to talk to you all and see how you're doing..

Have you experimented with different diets?

Thank you all for your kind replies. I hope you will all improve! I've been reading your posts and thinking a lot about what you write.

Recently the burning/itching of my upper back around my spine is growing and I still dont know why! Its not actual painful back pain more like iritatation, strong itching, or burning in the skin or just below the skin. like I have a wound or sunburn. It gets worse lying on my back. My breathing pain is the same as last time i wrote: mostly when I take deep breaths.

@Andy1986: I think maybe because of your reply I've been seeing a chiropractor for a week. Have you got a link to the poster with similar symptoms and a damaged vertebrae? I would really like to read it.

@Kburpee: I think stress plays a major factor in your physical health. However I dont consider myself particularly stressed. Except maybe from the stress caused by my symptoms. But that wouldnt explain how they got here the first time :) Recently I've been having that little fear that it could be - as you say - something worse like cancer. I quickly push the thought away but of course it causes a little bit of stress. Anyway I think you are right also about the physical activity being a good thing, so I will try to slowly start doing that. I hope you will soon have a good period like the one you had last year!

@Ericapeace2000: Ive started eating healthier and lost around 6 kilos (i have a bmi of 24). I had negative tests of celiac and lactose. But apart from that I havent tried any diets.

@trotters: yes, I am seeing a GI

@rialyn: I dont know about the burping, sorry. I so hope it will help you seeing a psychologist

Thanks again for your answers. And to anyone out there that may have a clue about what im suffering from: please write me!

Tmarcus,

Do you only get the breathing pain when breathing deeply or when exercising? Or do you also get these symptoms at other times?

Do you ever wake up in the middle of the night with this pain?