I haven't posted in awhile, because it seemed after my tonsillectomy things were going great for awhile. But the last month or so, they're detoriating again. I have now lost my voice again for almost 2 weeks. I'm being treated with prednisone and antibiotics for bronchitis that almost went in to pneumonia, but is there a correlation between always losing my voice (even without an upper respitory or strep) and lupus?
I went to my rheumy about a month ago and he said I have fibro too.
Any thoughts?
Hope everyone is doing 'well' (as can be expected, huh) :)
I am brand new to this board and am so glad to have found it. So far every other topic or so sounds like a question or issue I've been experiencing. Nice to know I'm not silly for trying to connect the dots between seemingly unconnected symptoms!
So sorry to hear about your voice! I am newly diagnosed and have lost my voice 3 times in the past 4 months. I was wondering if there might be a connection, too. I have an appt with my rheumy next week and had planned to ask him about a correlation because it's going again - I didn't think to bring it up before. I will share what I find out if someone on here doesn't provide an answer first!
Hello everyone! Yes, this can be part of your lupus. There is connective tissue by your vocal cords that can become inflamed. Mine do all the time. I get and increase in steroids and that seems to help. However, you should visit an ENT (ear, nose and throat) doctor just to be sure it’s not something else. Mine checked for tumors on my vocal cords and I was fine but they did see ulcers down my throat which contributed to the over all inflammation. Please get it checked out. If its not anything else you will know its our good “friend” Lupus!
Second thoughts are that it could be Sjogren’s if you are also having dry mouth, eyes and vaginal dryness. They can test you for that too.
I was also going to suggest Sjogren’s since that is a common thing. The bad news is that there isn’t any specific treatment instead it’s treated the same as Lupus. If you do have the dryness in your mouth, nose, you can use different things. Chew gum with xylitol to help with mouth dryness. There is a great moisturizing lip gloss from Loreal that is wonderful, it’s very light with just a hint of color and it stays on a long time. Drink lots of fluid but nothing with caffeine because that can dry you out more. If you break out in mouth sores at all make sure you mention that to your doctors. I have lupus, Sjögren’s syndrome and undifferentiated spondylitis. I never really know which one is causing what so I just treat the symptoms.
Oh there is also a mouthwash and toothpaste for severe dry mouth. It’s very comforting to the tissue. Good luck!
Hi, sorry to hear that there is another Lupus symptom I didn't know about, and hadn't experienced. I thought I had it all. LOL! sounds like you are truckin along as best you can. I hope you feel better. Try taking 5000 mgs a day of Vitamin D3. Seems to tone the symptoms down a lot.
Thanks ladies! I have been under the care of an ENT because of getting my tonsils out, but he attributed everything to Lupus as well and pretty much assumed everything would go away once I got those out. No such luck :(
It's just nice to know I'm not the only one with this crazy symptom going on. And I agree now that I have fibro as well, I never know which flare I'm in..lol :)
I am on a pretty hefty dosage of steroids, but only been on them a day, so can't quite tell if it's helping or not (still no voice).
My boss actually asked me if the doctor could do something for me so this "Lupus Stuff" quits coming back. I pretty much looked at him like he had 14 arms and gently said, unfortunately no, this one won't go away....ever.
Thank you so much for posting this issue Jenn. I have a hoarse throat and my voice changes so often I feel like the master of disguises sometimes. I also have Sjogren’s and fibro along with the Lupe. (Amy’s suggestions are basically how I live…even at my wedding 20 years ago, you can see my seltzer bottle next to me on the ground in the receiving line photos…don’t go anywhere without it. Lol. ) nowadays it’s common to see people carrying water bottles but back them it was a little strange to carry a bottle around wherever I went. If I don’t though my mouth completely dries up, especially if I am speaking. I never put the correlation of my laryngitis to the connective tissue but there you have it…thanks again and hope you feel better today than yesterday, but not as good as tomorrow ~Maré
so that is what is going on with my voice. is there really truly a doctor that recognizes all the problems and helps one with the issues? Or maybe there are a lot of them and are afraid to scare us with the truth? Hmmmm
~Maré