Advice please! New to the forum!

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theCorgiFreak
New Member


Date Joined Oct 2012
Total Posts : 4
   Posted 11/14/2012 1:02 PM (GMT -6)   
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

Sweet Potatoe
Regular Member


Date Joined Oct 2012
Total Posts : 87
   Posted 11/14/2012 1:58 PM (GMT -6)   
Susan, I am wondering if you could ask one of your Doctors to prescribe you a Transderm Scopalamine Patch that you wear behind your ear and change every 3 days if that would help control your nausea, vomiting and cut down on your secretions causing the foam balls? Also adding Aloe Vera juice 2 ounces twice a day.( Super Walmarts carry this is gallon container for about $8:00 ball park figure.)You are already backing down on your diet. Include in your diet yogurt and applesauce. Also eating fresh apples may help. Share this all with your Doctors to see what they say. Best Wishes and I hope you feel better soon. You are on a good forum with all us Gerdie Troopers to support you.
Anne
:-)

ericapeace2000
Veteran Member


Date Joined Mar 2012
Total Posts : 1110
   Posted 11/14/2012 2:12 PM (GMT -6)   
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.
GERD Moderator; Diagnosed GERD, no other medical conditions (this one is enough)

theCorgiFreak
New Member


Date Joined Oct 2012
Total Posts : 4
   Posted 11/14/2012 3:28 PM (GMT -6)   
Anne,
Thanks! I'll definitely ask about that patch. I'm willing to try anything right now...

Ericapeace2000'
I know GERD effects people of all ages. As to what my doctors are stumped by, they don't know why my esophagus isn't functioning. That's something that typically occurs in the elderly, that's why they keep mentioning my age. I just switched providers so I'm now seeing doctors at Kaiser that are not familiar with my extensive medical history. My former rheumatologist gave me a copy of my transition file, and I can tell you only two doctors have read it, my primary physician and the rheumatologist. As of right now, they believe the non functioning esophagus is due to weakness from the Polymyositis. They're concerned I may choke on food or aspirate from vomiting.
Thanks for your time and take care!
Susan
Polymyositis, Fibromyalgia, GERD

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/14/2012 6:46 PM (GMT -6)   
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. 
 
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
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”Eckhart Tolle

theCorgiFreak
New Member


Date Joined Oct 2012
Total Posts : 4
   Posted 11/26/2012 3:39 PM (GMT -6)   
Hi Denise,

Thanks for the advice of lifting the bed. I'll be sure to try that out. The wedge helps a little but I still get breakthrough nausea which almost always results in vomiting. I'm currently on 40mg of Protonix before breakfast and dinner. My gastroenterologist gave me some Ranitidine as well.

Have you tried alkaline water? It was recommended to me because I have a tendency to get hot flashes with certain foods. Doctors can't answer whats causing it but I've read that the alkaline water would help neutralize the acid in my stomach. Any experience with this?
Thanks for your time and take care!
Susan
Polymyositis, Fibromyalgia, GERD

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/26/2012 3:56 PM (GMT -6)   
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
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle
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