PDA

View Full Version : My journey so far, and why I think I'm lost



Orange Lightning
30-05-14, 11:24
I mentioned in one of my other posts recently I was going to make an extensive post about everything that's happened to me so far. This is partly so I can call for help, partly so I have a reference for my specialist appointments, as I have an awful memory for details. Please bear with me, I may go off on a tangent here, this is all a very distressing subject for me.

***

Let me start by summing up the situation in one simple sentence. Whatever it is I'm suffering with - and at this point, it's probably an incurable illness - I can't accept I have it. It's awful, it's horrible, it's every day of my life and I wouldn't wish it on the worst person alive. If I were to accept having it, I would probably take my own life without hesitation as my quality of life right now is almost zero. In this regard, I'm forced to live in denial, desperately hoping my symptoms are all just caused by anxiety alone. If they are, they're curable, unlike say, LPR reflux which has no definitive cure. Those 3 little letters are the bane of my life. Even surgery and medications can't completely stop it, and all my efforts to halt it or reduce its severity have thus far failed. All my attempts to eat/drink/excercise/work/play/enjoy life like a normal person again also backfire, because I can't improve my symptoms, but I can most certainly make them much worse.

About 18 months ago now, I had signed up to a gym programme to improve my appearance. I was very conscious about my looks at the time, and felt the only way I'd even begin to find a relationship in this fickle world was to drop the whole "stickman" build. I also needed the strength to help with my chosen career path in animal care, where heavy-lifting is almost always a necessity. About a month or so into the membership, I started experiencing strange symptoms in my chest and arms. At first I put it down to an injury, but eventually I started getting shortness of breath, dizziness, heart palpitations and arm pain. Because heart disease has run in my family before, I couldn't ignore it, and found myself in A&E several times worried about my heart. I can't deny around this time I was experiencing a lot of stress relating to my job and discovering my sexuality as well, but whether these were the cause of all my problems to date, I cannot say, especially since a gym injury is much more likely isn't it? An Echo test ruled out any problems, and I thought I was going to be free of the symptoms forever.

In this last week, those same symptoms have returned not too long after binging on bad foods for my birthday and taking a PPI Nexium. I now believe all those symptoms are actually related to reflux, not the heart. This has been my train of thought all year round. All in all, these are the symptoms I have suffered over the last 17 months, at one point or another, mostly at the same time:

- Burning throat, even with alkaline water
- Post nasal drip/Throat clearing
- Chest/Back pain
- Arm pain
- Shortness of breath, especially after swallowing
- Thick, mucus-y saliva
- Palpitations
- Head pressure from lack of oxygen intake
- Ear pain/Saliva in ears
- Very tight throat except when eating
- Burping up liquids stuck in throat
- Gasping for air
- Some nausea (never actually sick)
- Some heartburn
- Headaches
- Insomnia episodes
- (Probably other symptoms I've forgotten to mention here)

Unfortunately, EVERY SINGLE ONE of these symptoms can be caused by reflux. Sometimes I get temporary relief in 'Googling' my symptoms, and finding someone saying "Yes, anxiety can cause that," but then I find something else (often on the same webpage) saying "Yes, reflux can cause that, not stress." Over the months I've tried everything on both sides of the coin to "cure" my anxiety and/or reflux. They include:

- CBT
- Hypnotherapy
- New hobbies/distractions
- OTC medicines like QuietLife, Rescue Remedy and Nasal Saline Sprays.
- 4 different antidepressants/antianxiety drugs
- 6 different reflux medications of varying strengths
- 3 different reflux diets
- Vitamin D3
- Alkaline water
- Lifestyle changes like raising the bed or watching the clock when I eat

All have failed or had minimal effect. The tests I've gone for include:

- ECG and Echocardiogram (to rule out heart problems)
- Endoscopy (clear)
- Barium swallow (clear, but these are expected to be clear in reflux these days)
- Rapid Spit Test (clear)
- ENT throat scopes (clear)
- Vitamin D3 blood test (optimum levels)
- Larynx pH probe (NOT CLEAR, but not conclusive evidence either)
- Impedance and Manometry (waiting for these to begin)

I can't deny the evidence suggesting I have reflux, and I can't deny my symptoms could be caused by stress too. This makes life very difficult for me. I want it to be stress, I really do. Then I can believe in the ability for me to cure it. However thanks to the pH probe not being negative, and everyone saying I probably do have reflux, and all my attempts to return to a normal, fun lifestyle backfiring, I firmly believe I have LPR, both as bad as it gets, and as incurable as it can be. It's tearing my family apart, it's cost me my dream job (I can't lift, bend or do strenuous exercise as my job demands) and other jobs too. It made me give up my religious beliefs - I refuse to believe in gods who would willing let people suffer like this. It's on my mind as soon as I wake up, but the symptoms don't begin until I do specific things like swallow, run or drink water. It's all too specific to be stress, surely?

This will have to do for now, I will update the post with my replies if there's anything specific missing. Please let me know what you think of my case. Do I have any chance at all of getting better? No more LPR, no more stress, no more restricted lifestyle? I beg and pray I can be 100% cured - I must admit I've got a plan to end my suffering if the final result says reflux... ;(

Thank you for taking the time to read this post, and I apologise for the sheer number of posts I've made all this time. I'm sure you all understand how difficult this is for someone afraid to be ill for the rest of their life.

swgrl09
30-05-14, 13:11
Hi Orange Lightning,

I don't know a lot about reflux or what can be done about it, but I'm sure other members here do. I just wanted to say that I am sorry you are going through such a hard time. It looks like you honestly have exhausted every option you have to treat this thing.

I hope others here who have experienced the same read this and can offer some suggestions or support. I just wanted to let you know that you must be a very strong and resilient person to keep going, keep looking for answers, and keep trying.

:hugs:

Orange Lightning
31-05-14, 13:13
Hi Orange Lightning,

I don't know a lot about reflux or what can be done about it, but I'm sure other members here do. I just wanted to say that I am sorry you are going through such a hard time. It looks like you honestly have exhausted every option you have to treat this thing.

I hope others here who have experienced the same read this and can offer some suggestions or support. I just wanted to let you know that you must be a very strong and resilient person to keep going, keep looking for answers, and keep trying.

:hugs:

Thank you. Yes honestly I feel like I'd sooner win a lottery jackpot than ever be healthy and happy again. When one single belch, swallow, glass of water etc sets me off, and when I feel like I'm so full of mucus I have a blockage in my throat, it's impossible to not think about it.

Fishmanpa
31-05-14, 14:12
Life is about adapting to your circumstances and the "new normal". I have reflux too. I take a PPI and have to watch what I eat (I used to eat antacids like they were candy and it still didn't help). Certain things set it off so I don't eat those things. Your "new normal" will mean doing much the same. It also means treating your anxiety as it feeds the reflux. The more you stress about it, the worse it will get.

It's not a deadly incurable illness and it's treatable. Does it mean you'll have do some things differently? Sure, but we all have to adapt to circumstances when they happen.

You can "choose" to look at it as a negative or a positive. You're worst fears weren't realized. It's not your heart or cancer or some other illness or malady that could cripple you physically. You can allow this to bury you deeper or "decide" to treat it. Seek treatment for your anxiety to help lessen the stress. Speak to your GP about a PPI. I had to try three different ones before I found one that worked for me. Modify your diet so you don't eat things that aggravate it. Do common sense things like not binging, drinking alcohol or smoking.

I have to admit, when I read you post it kind of struck a nerve and I debated as to whether to respond as I might have allowed my emotions to spew out. I'm most certainly older than you at 55. Two heart attacks, triple bypass, stents and most recently Stage IV head and neck cancer are a few of the health issues that I've dealt with and have changed my life. Not to mention the acid reflux which I've had since I can remember and other niggles. I adapted and I'm learning to live with the "new normal". I accept it will never be the same as it was before. I deal with it and make the best I can out of life. I have more side effects and pain than you can possibly imagine and I wouldn't wish what I have to deal with on a daily basis on anyone but I deal with it and move on. It's not easy but nothing in life is. That's just the way it is. But I'm happy and thankful for each and every day I open my eyes. It sure as hell beats the alternative!

You have a choice OLightning. What will you decide?

Positive thoughts