There are SO many things going on that I have written numerous blog posts in my head about, but my hand pain continues unabated (I've been having trouble getting on the medication that is supposed to help, a story for later...) so I still can't type very much. Arg! I've decided to try and post shorter than usual posts a bit more often, so that I can at least get things down on paper so to speak. First up: a (likely final) update on the LPR. (There are 3 other parts to this story: 1, 2, 3.)
This all started roughly 8 years ago, and began with voice problems and a chronic cough (of the choking/sputtering till you want to vomit variety) that cropped up after a bad bout of bronchitis (pneumonia?) that I had for the better part of a year around 2008. It was pretty mysterious in the beginning, and I thought surely it would go away, but it's only gotten worse. No treatments have really worked, and I continue to have major issues with LPR and my voice (I can only talk for 30-60 minutes before my throat gets sore and hoarse and I have to stop or else I start getting coughing fits and losing my voice). (Note: In case you're not an LPR sufferer and are confused, LPR is a type of reflux that doesn't give you heartburn, but rather throat, esophagus, and vocal issues.)
As anyone who has this condition will tell you, LPR and specifically the vocal problems it causes have a significant impact on my life - apparently the quality of life impact is even medically documented. It severely limits my ability to communicate, and it also means I can't use voice dictation software regularly to compensate for the joint pain in my hands restricting my ability to type. It deepens my social isolation, intertwining with my being housebound a lot of the time, since I can't talk on the phone or Skype anyone for more than about 30 mins (talking in person requires less projecting so I can often do bit more if it's somewhere quiet), and even if someone wants to come over and visit, one-on-one visits where I have to talk a lot lead to me getting a really sore, hoarse throat long before a typical visit would be done. Often, we just have to watch Netflix so there's not as much talking, unless there are other people to take the conversational burden off me. As someone who LOVES talking and time with people (and writing!), it flat out sucks. Obviously enough, it also affects the amount of work I can do on Textillia, which is already frustratingly small to me.
Anyway, the reason I'm writing this update is that my posts on LPR are the most viewed and commented on posts on my blog by a long shot. I get emails on a weekly basis from people telling me how much their LPR is ruining their life, and asking me how to fix it or what doctors to see. People share their tips and questions in the comments. I gave up long ago trying to respond to them all and have started directing people to the LPR Facebook Group, which is a fantastic resource and support group.
I think I finally have an "ending" to the story of why this happened at least for me (and sorry, it probably won't be a help to most LPR sufferers!), I believe my LPR is just another consequence of Sjogren's Syndrome, and was one of my earliest symptoms. If you've been following along I've been (sort of officially) unofficially been diagnosed with Sjogren's Syndrome (or at least some kind of autoimmune Connective Tissue Disease). This is an autoimmune disease that affects the liquid and mucus production in the body, and much like its sibling diseases, Rheumatoid Arthritis and Lupus, it can also affect the joints, organs, nervous system, etc. in more severe and systemic cases (which is what I'm assumed to have).
One of the primary consequences of Sjogren's is that it significantly decreases mucus, tear, and saliva production. Mainly this is because the immune system attacks and kills the actual gland tissue in the tear and salivary glands, but thanks to also attacking the autonomic nervous system (mine has been particularly hard hit, causing the blood pressure issues/fatigue and also slow gastric emptying has started up too, wheeee...) the decrease in production gets even worse at night. While my dryness is usually only annoying during the day, at night it becomes very uncomfortable and damaging to the tissues. My eyes stop making tears, so if I don't use drops and gels, my eyelids stick shut at night and are hard to open in the morning, which can cause a serious risk of corneal scratches and tearing. My nose stops making snot - might sound good, but it's not - it leads to pain, sores, and nosebleeds if I don't use gels and humidifiers.
And finally, my saliva - my mouth and throat are like the desert overnight. It is worst in the winter when we have the heating on - every night my saliva stops production, and my mouth and throat dry out completely. This leaves my mouth vulnerable to bacterial overgrowth and rapid tooth decay, and my throat and esophagus unprotected for acid reflux to come up and burn and irritate everything. It doesn't get washed back down until I wake up and sip water or start making saliva again for the day. As a bonus, my pancreatic function has declined, and the pancreas is responsible for making bicarbonate to help keep acid in check, so that allows my stomach to be even more acidic and throw all that acid into my delicate throat tissues (and sometimes even up into my sinuses, also super painful!) all night long.
My understanding of the reasons my LPR happens are (this may be different for others):
- Looser lower esophageal sphincter (LES), I can only assume because of the nervous system dysfunction.
- Higher acid because of lower bicarbonate production in the pancreas.
- Also, I often have indigestion and food sitting in my stomach into the night/overnight because of the slow gastric emptying.
- Lack of mucus/saliva to neutralize acid and protect tissues.
- (Maybe a small amount of vocal/swallowing issues could also be neurologic?)
The only treatment that seems to exist (aside from drastic measures like LES tightening surgery) is taking PPI's (proton pump inhibitors) i.e. acid blocking medication, or its little sister H2 inhibitors. I may yet try H2 inhibitors, but PPI's are off the table both because they make me feel horrible and actually worsen my indigestion and digestive symptoms, and also because I also have osteoporosis and malabsorption, both of which they are known to worsen.
So, I do what I can to mitigate the severity of the reflux and symptoms, especially at night. My LPR management plan includes:
- No acid diet. (Acidic food just makes me choke and cough anyway.) And also, limit things known to loosen the LES or cause pressure in the stomach like mint and chocolate, and carbonated beverages. The old Dropping Acid blog (no longer updated), and the author's other blog on the Voice Institute of New York's website are both great resources for LPR and low-acid diets.
- Sleeping on an incline (I have a large foam wedge instead of raising the entire bed, so Bruno doesn't have to sleep inclined), and sleep on my side.
- No food or drink 3 hours before bed.
- Medication: For me this means Nalcrom (sodium cromoglycate, a mast cell stabilizer which helps with the itchy throat I have during hayfever season, but coincidentally helps calm the reflux a bit, H2 inhibitors would likely give a much similar but more potent effect) and Gaviscon (an over the counter foaming antacid) before bed.
- Using humidifiers in the winter, and sipping water as needed when the dryness wakes me up at night.
- And for my teeth: good dental hygiene. Flossing every night, using an electric toothbrush to keep the plaque at bay as much as possible. Dentist cleaning/checkup every 6 months.
That's pretty much all that works, and all I can do as far as I know right now (aside from maybe trying the H2 blockers, but they still have some of the issues the PPIs do, so I'm keeping it as a last resort).
Because LPR, reflux, slow gastric emptying/gastroparesis, and throat, voice, and esophageal problems are actually common with Sjogren's which is an uncurable chronic illness, I no longer feel there is any way to cure my LPR and have accepted managing it as best as I can. I'm crossing my fingers the damage doesn't progress to those scary things that can unfortunately be a consequence (throat and esophageal cancer, for the unanointed). I may also end up seeking speech therapy to see if there's anything that could be done to help me make the most of my vocal abilities so I can talk/communicate more than I can right now, but that will come later as I'm still deep in the muck of getting the Sjogren's/UCTD managed at the moment.
Ok, my hands are killing me already, so that's it for today. I'm going to lock the comments on this and the other LPR posts now, as I really want people to use the LPR Facebook Group instead of posting here - you'll get much better responses and support there! And best of luck to you if you're dealing with this too - I know it sucks, but just do what you can to adapt and manage it, it's really all we can do!