Advice please! New to the forum!

Hi everyone,
I'm very new to this forum as well as GERD itself, so please bear with me. I've had Polymyositis(PM) for almost 23yrs, fibromyalgia(FM) for 15yrs, and was just diagnosed with GERD about 5months ago. The PM causes pain and weakness in the muscles, FM causes more pain and fatigue, and now nausea and vomiting from GERD. For YEARS I had been experiencing nausea and vomiting, but was told it was due to the FM. I used to be a belcher, putting guys to shame. Now, they're kind of difficult to get out. It was earlier this yr that I started having more difficulty swallowing (I've always had some difficulty) and a constant feeling of something stuck in my throat and chest. It wasn't until I had a bout of nausea and vomiting that lasted 3days that my doctors became concerned. Primary physician sent me to rheumatology, they sent me to gastroenterology, which sent me on my way to a swallow evaluation and endoscopy. The results were somewhat disappointing news. With the swallow eval, we came to find out that my swallowing in fine. The real problem is that my esophagus is not working. Its not contracting to push my food down, which is why I always feel like I have food in my throat and chest...because I do! It's just piling up in there! Gravity is what's pulling my food down, so I've been given specific eating instructions, small bites, swallowing small bits at a time, wash it down with water...blah blah. I can literally feel the food piling in my chest, which leads to shortness of breath. My endoscopy was yesterday, no obstructions or polyps, and it's going to be about two weeks before pathology has results from the biopsy. I had chest X-rays done and those came back normal. My main concerns are the nausea, vomiting, and shortness of breath. It's been so frequent and debilitating, it's really taking a toll on my mental health. I feel like I've somewhat stumped my doctors because all I keep hearing is "you're so young, this shouldn't be happening(I'm 29)." I'm currently on Protonix and Compazine. I've been modifying my diet' which had been torture because I LOVE FOOD. When I'm nauseated, it's usually belching up wet, bubbly burps or vomiting that relieves it. I'm usually nauseous in the mornings, which leads to vomiting thick, foamy saliva and bile balls. Sorry that sounds so gross....I've stopped eating after 10pm, I'm sleeping on a wedge...what else can I do? Does anyone else experience this much nausea and the foam balls? I'm starting to go a little bonkers...help!

Thanks guys,
Susan

Sorry to hear about what you are going through. GERD affects all ages, I am 30 and have had it since age 22. You really need to find a good GI doctor. If you are not getting anywhere with the doctor you have, look into another one. You may also want to consider accupuncture.

Hi Susan,

Welcome to Healing Well!  You obviously are a difficult medical case and require top doctors to work this out and help you.  I suspect you've got plenty of doctors working on your case, but I'm wondering if you could get one of long-term doctors to help you locate the very best practitioner available to figure out what's going on and how to get you healthier. 

I feel your pain.  It's a really tough problem you're faced with, since your swallowing issues limit the options that you have for treatment.  You'are taking a PPI (proton pump inhibitor) for reflux, but you didn't say the dosage or when you're taking it.   Those meds can be taken twice a day...before surgery I took 40mg before breakfast and 40mg before dinner.  If you're refluxing at night, the before dinner dose would be very important. Also, if you're still getting breakthrough reflux at night, you could take 300mg Ranitidine (Zantac).  Discuss these possibilities with your doctor.  If your lungs are involved it's even more important to get the reflux /acid under control.

Here is a very helpful document that explains the importance of taking PPIs correctly to ensure that you're getting the most benefit from them. 

http://www.practicalgastro.com/pdf/January07/Jan07FrankArticle.pdf

You mentioned that you're sleeping on a wedge.  I have slept on a wedge, and I can assure you that raising the head of your bed is more effective in keeping the contents of your stomach where they belong.  Put blocks, wood, and/or bed risers under the legs at the head of your bed to raise it 7-8 inches.  You'll find it more comfortable and if you slide down you won't be putting pressure on your stomach the way you might with a wedge.  On very bad nights you can use the elevated bed AND the wedge for even more protection.  The wedge is always good to take with you when you travel and are forced to sleep in a flat bed.

The small bites and chew, chew, chew are critical with swallowing issues.   If you follow that great advice and also eat more slowly, you'll have a better chance of getting your food into your stomach, where it belongs.

Glad you've joined us!

Wish I could help more...

Best wishes,

Denise

Hi Susan,

I have never tried alkaline water...I'll be interested in hearing if it helps!  I hope you get things into control soon!

Best wishes,

Denise