Posted , 7 users are following.
What is the mechanism behind the issues with SS and voice "coming and going", throat clearing and coughing? I have it but don't understand what it is and wonder if it is caused by more than simply dryness?
2 likes, 12 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
Tumtum1963 jennifer09136
Posted
I'm interested to know this too - will watch for replies but I have wondered about reflux as a culprit and also about the same mechanism that makes RA sufferers hoarse - a joint in the throat I believe. See RA Warrior for more info.
Tumtum1963
Posted
Bearing in mind that Sjogren's often mimics the symptoms of RA see RA Warrior - Cricoarytenoid Arthritis in Rheumatoid Arthritis, Part 1
lily65668 jennifer09136
Posted
I've always assumed it's because of drying of throat secretions as part of general "sicca syndrome". I find it's mainly a problem in the morning, which seems to bear out this theory in my case. Once I rehydrate, cough a bit and start using my voice, it generally clears up for the rest of the day.
Tumtum1963 lily65668
Posted
deidra40034 Tumtum1963
Posted
Yes...that tinnitus is very annoying!!! I would keep an eye on that breathlessness!! SS does attack the lungs, that is one place so far, that has not been hit on me, it has however gone inside to my other organs! I have always been told the hoarsness is from the dryness. The saliva is nearly non existant and thick, and our salivary glands are so dry, and our nodes under our chin can get so dry that we can get stones, and that is very painful, and sometime have to be removed. It helps to massage those areas, as it can also get very thick in there. The nodes under my chin do get very hard, and sore, I do massage those, it takes a few days to a week, but they eventually go a way. I chew gum, sugarless of course, and it helps. You can also ask your doctor, and your dentist for help in that area. Most dentists are up to date on SS, and are helpful. I would call and ask first though. Good luck!!
deidra40034
Posted
forgot one thing...there is not enought saliva to make it all the way down to coat our vocal cords like they should...that might make better sense to you than my gibber gabber! LOL
jennifer09136 deidra40034
Posted
Tumtum1963 deidra40034
Posted
Yes thanks Deirdra - lots of sense to me as well and is what my GP thought too. I'm not worried about the breathlessness as it goes with the dryness I reckon. I had a CT with contrast last month and it was thorax to pelvis so if anything bad had shown up I'd know by now.
morelia100 jennifer09136
Posted
Hi Jennifer,
You asked about the "coming and going" -- I too, wondered how this could be possible. After extensive reading, I tend to lean towards the theories that it is all connected to what we eat and how our body processes certain foods, exposure to toxins, levels of stress, sufficient sleep, and moderate exercise. I wish there was a simple answer. I had the same problems which at their height, about 2 years ago, were completely annoying. For me the biggest change came when I started cutting out sugars, dairy, wheat, corn and soy from my diet. I rarely suffer the same problem with clearing my throat. Also no canker sores, no joint pain, no fatigue, and rarely any reflux (which I used to have regularly). I still have problems with my eyes being dry -- which I'm sure fluctuates with my eating pattern. I found that coconut oil soothes many of my ailments both topically and orally. I have not had the discipline to stick to a strict diet (I wish I could) -- but I keep trying. I definitely feel better when I do, and also after trying for so long, I have found that it is not a big sacrifice like I used to think that it was. The rewards are worth it, particularly if you have severe symptoms. If you have access to a naturopath, I would highly recommend seeking their guidance on your way to recovery. If you are interested, send me a note and I will give you the names of some really good books that I have found. I don't think I am allowed to list them on a post
Best of luck. I wish no single person had to suffer autoimmune problems.
tracy79802 morelia100
Posted
Morelia - I agree with your comments about our diets being a big contributor to symptoms. I cut out sugar and carbs from my diet for two months and felt the healthiest I had felt in a long time. Then over a two week period I started eating sugar and carbs again and felt terrible. At the time I didn't link the two together until I realized the only thing that had changed was my diet; eating sugar and carbs.
As a result, I'm going back off of the sugar and carbs again. It's not worth it and I enjoy meat and vegetabes so it won't be too bad.
Thanks for the reinforcement on diet, exercise, rest, etc. It's a great reminder.
Take good care. Tracy.
morelia100 tracy79802
Posted
Thanks Tracy,
I first discovered the link between diet and my autoimmune system on this site. So I feel, like I can give back by letting individuals know, who may not, that there is hope. I really appreciate hearing from others who are doing similar things to heal themselves. Thanks for your comment
SharonFromBama jennifer09136
Posted