Most of us have read that Fibromyalgia co-exists with GERD. Chest pain too, is a common Fibromyalgia symptom. Some of us are told this by our doctors and we accept it as the truth, believing that our symptoms are all caused by Fibromyalgia and nothing can be done to treat them.
I suffered from extreme GERD and often got such bad chest pains that I would think that I was having a heart attack. I even ended up in the emergency room one night because of it. The ER doctors put it down to Costochondritis. I would often have stomach acid in my mouth due to acid reflux. It had been carrying on for so long that I began to think it was normal. My heartburn was very bad too.
Then I started battling to swallow my food and was choking on everything. I discussed this with my doctor who treats my Fibromyalgia and he told me that it was normal and all part of Fibromyalgia. The treatment he suggested was Trigger Point Injections in the chest, the muscles between your ribs, and the muscles on the sides of my neck. He performed these TPI’s a few times and there was no difference at all. The treatment wasn’t helping at all.
I decided to consult a Specialist Physician about it. She recommended that I have an endoscopy to see if there was anything wrong. After the procedure, she told me that I had a very large hiatal hernia, basically a lot of my stomach was sitting in my chest, and also that my lower esophageal sphincter (LES) was not working properly. This explained why I often had acid reflux. I also had bad esophagitis, which is when your esophagus is inflamed from the acid burning it, and this explained why I was choking on all my food.
She briefly explained my treatment options. I could have surgery to repair the hernia and sphincter, however she advised against this as the operation only had a 50% success rate. The alternative was to take Proton Pump Inhibitors (PPIs) to control the acid in my stomach. I obviously chose the PPIs.
I took the PPIs religiously but the choking wouldn’t stop. I decided to do some investigations of my own on the internet. I found an article which explained how esophagitis can turn into Barrett’s esophagus. This means that permanent changes have been made to the lining of your esophagus. If you get Barrett’s esophagus, you also risk getting esophageal cancer and this is basically as death sentence.
I was not prepared to just sit back and let this happen to me. I spent a long time on the internet searching for a highly qualified doctor who would be able to give me a second opinion. I found a Gastro Oesophageal Specialist Surgeon who was highly recommended on the internet. A lot of his previous patients had rated him and discussed how great he was. I phoned and made an appointment with him immediately. I waited a full year to see him.
During the consultation, I explained everything that I’d had done with the Specialist Surgeon and mentioned her recommendations. I explained to him that I wanted to get a second opinion as I was still choking on my food and was also nervous about the damage that was being done to my esophagus. He was an amazing doctor. I had a few tests done and then I had a 24 hour Esophageal pH Test. For this test, a disposable capsule was placed into my esophagus and I had to wear a receiver around my waist. The capsule then wirelessly transmitted information to the receiver. The procedure is called Bravo Esophageal pH testing. This measured my acid levels and also my acid reflux while I slept.
After the 24 hours had passed, I went back to the Professor to hand the receiver in so that they could analyze the data. The prof then performed an endoscopy. Once he was in possession of all my results, he sat me down and explained that I had a very large hiatal hernia, that a lot of my stomach had pushed through the diaphragm and was sitting in my chest. My sphincter was not working and I had bad esophagitis. This was why I was choking on all my food. He discussed the chest pain with me and told me that it was probably due to the hiatal hernia. He recommended a Nissen Fundoplication operation. Basically, he was going to put my stomach back to where it should have been, repair the diaphragm, and then perform the Nissen Fundoplication. In this procedure, they wrap a portion of the stomach around itself and create a ‘new sphincter’. He also told me that his success rate was 98%. I was so happy to have a solution to this problem.
Within a week, I had the operation performed. After 7/8 days in hospital, I went home. Over the next couple of days, I developed severe back and neck pain. I just thought it was due to the gas, which they used to inflate my abdomen, working its way out my body. It was almost the exact same pain that I had experienced when I had my gall bladder removed. My follow up appointment was in 6 weeks time.
At the 6 week appointment, the Prof performed an endoscopy to see how everything was healing. After I woke from the anesthetic, he asked me whether I had been experiencing a lot of pain. I told him that I did have immense pain but that I had put it down to the gas working its way out of my body. Well that was not the case. I had developed an ulcer. He put me on PPI’s again and I had to see him in another 6 weeks time.
During this waiting period, I was still not able to keep any food or liquids down. I started looking anorexic. I was very weak and the Prof decided to admit me into hospital immediately. I was given a feeding tube. This is one worst things that I have ever endured. They feed a tube through your nose, down your throat, and into your stomach. The following morning he performed an endoscopy and explained that he needed to perform another surgery in order to loosen the fundoplication as it was too tight.
Once discharged from hospital, I needed to see him again in 6 weeks time. At some stage during those 6 weeks, I developed severe abdominal pain. I went to see him and he performed an endoscopy. Once awake, he gave me the bad news. He needed to operate a third time to remove the ulcer, as it was very close to the aorta, and in the event that it perforated, it would kill me. So off to theater we went for the third operation.
The Prof came to see me once I had woken. He told me that I was extremely lucky to be alive and showed me his arms, which were covered with goose bumps. He explained that during surgery, he found that the ulcer had already perforated and an abscess had developed. He had to work very quickly and carefully to remove the abscess before it burst. If it had burst, the gastric acid would have burnt through my aorta and the rest of my organs too. I would have died within minutes. I was extremely lucky that he’d decided to perform the third surgery urgently. I was also very grateful that I had a brilliant doctor who managed to repair everything. A drain was inserted in order to drain the infection. After recovering, I was discharged and a 6 month follow up appointment was made. I had a few follow up appointments and after a while, these appointments were then changed to once a year. The last endoscopy I had, he told me that he was a bit concerned as my diaphragm was very week.
Besides the complications, the operation was completely successful. My esophagus healed beautifully, and I no longer need to worry about esophageal cancer. I am able to eat my food without choking, have no heartburn, no acid reflux, and I haven’t had that very painful chest pain since the operation. All of those symptoms were caused by my hiatal hernia. Turns out that it was not just another Fibromyalgia symptom after all!
This situation taught me a very big lesson. Always listen to your body and trust your gut instinct. Always exercise your right to a second opinion and make sure that what the doctor tells you is in fact true. You are the only one who will advocate for yourself. Trusting my gut instincts this time worked out in my favor.
If you suffer from extreme GERD, make sure you have it checked out before just assuming that it’s part of Fibromyalgia. The doctor may or may not find anything wrong, or anything that needs fixing, but at least you have will have made sure that your symptoms are not caused by your GERD. Just one extra check is needed
So after telling you everything that happened to me and how just a little research empowered me to question my doctors’ recommendations. This questioning resulted in me finding a solution to get rid of my GERD and accompanying symptoms. This has possibly saved my life.
My question is this: Fibromyalgia tends to co-exist with GERD, but does it really? How many people are sitting thinking that nothing can be done to ease these symptoms and that it’s just another part of Fibromyalgia? When in reality, that may not be the case at all.
Know your condition better than your doctor. Listen to your gut instinct and do what ever is necessary to help ease your suffering!