Does anybody else here with Lupus lose their voice when they have a flare? I have had the Lupus diagnosis for about 5 months now. I am just starting to try and identify patterns and have noticed that when I overexert myself or stay in the sun too long, I feel really bad the next day and "lose my voice" making it difficult to speak. Does anyone else experience this? Thanks.
I have that problem, but never linked it to the Lupus. It's really inconvenient, too, because I am a vocalist. I'd be interested to learn if it IS a symptom of the disease.
I just have to ask, do you get heartburn or have acid reflux? I would lose my voice all the time. Then I found out it was from my reflux. My reflux would get worse when I would have a flare. Now I pay a fortune for Prilosec but it does make me feel better.
I'm not sure but it has happened to me 3 times now. And I never "lost" my voice before. It has always happened during a flare when I feel horrible after overexerting myself. Do you feel bad when you lose your voice or is that your only symptom at the time?
Jazmin said:
I have that problem, but never linked it to the Lupus. It's really inconvenient, too, because I am a vocalist. I'd be interested to learn if it IS a symptom of the disease.
No, I don't ever get heartburn or acid reflux. I did when I was pregnant both times but never since then. Thanks for the idea though, that's what I'm searching for.
Tina said:
I just have to ask, do you get heartburn or have acid reflux? I would lose my voice all the time. Then I found out it was from my reflux. My reflux would get worse when I would have a flare. Now I pay a fortune for Prilosec but it does make me feel better.
In the afternoon my voice gets horse sounding. It is a strain to talk so I do as little as possible. I was advised by my GP to see an Ear, nose and throat Dr. I will be doing that next month. I am so tired of going to Dr. appts. I will post if it is anything important.
Thanks for sharing. I hope your appointment goes well (you get some useful information). Please keep us posted on your results. I also have trigeminal neuralgia (according to my rheumy) anytime I get dental treatment done. It is very painful and often presents as an ear infection as well as sore throat and extreme pain. I take antibiotics or Prednisone to get rid of it. Always on the side that I had treatment done (fillings). It is also a strain to talk when this happens to me. Very uncomfortable and I have a toddler that often needs to be "disciplined" but all he can do is laugh at me when I sound like this, lol.
Flower said:
In the afternoon my voice gets horse sounding. It is a strain to talk so I do as little as possible. I was advised by my GP to see an Ear, nose and throat Dr. I will be doing that next month. I am so tired of going to Dr. appts. I will post if it is anything important.
I haven't felt WELL in several years (was only diagnosed a month ago). So, I'd have to say I didn't feel any worse, but I never had this problem prior to my other Lupus-like symptoms. I,too, haven't had heartburn nor acid reflux.
Alex said:
I'm not sure but it has happened to me 3 times now. And I never "lost" my voice before. It has always happened during a flare when I feel horrible after overexerting myself. Do you feel bad when you lose your voice or is that your only symptom at the time?
Jazmin said:I have that problem, but never linked it to the Lupus. It's really inconvenient, too, because I am a vocalist. I'd be interested to learn if it IS a symptom of the disease.
I have the same issue. During a flare I can loose my voice for days. In fact I’ve come to use it as a gauge. A lot of days , my voice will become hoarse and I’m unable to produce any volume. So, I know if
Starting to loose my voice , I need to slow down. There are periods of time that it happens on a daily basis. Usually when in the evening when I’m tired. My rheumatologist said like other parts of the body become inflamed, the vocal cords can be inflamed. So, loosing one’s voice is due to inflammation of the vocal cords. I hope this helps you not to feel alone. If you have a symptom that you’re unsure about , the best course of action is to bring it to your rheumatologist at your next appointment and she/he can either identify it as a symptom she recognizes or help you find the cause of your symptom. By the way my rheumatologist also said that there are no two identical cases of Lupus. So, just because the doctor hasn’t yet encounter a particular symptom , doesn’t mean it’s origin isn’t Lupus.
I recently went to my rheumatologist! He’s very concerned about my voice. Diagnosied two years ago, he asked me how long had my voice been hoarse! I replied, many years ago. Im hoarse 24/7. My throat or any other parts of my mouth doesnt hurt. But about two weeks ago, i was told that something could be resting on my vocal cords and that i should see an ear, nose, and throat specialist. Well let all know the results! God’s Blessings
Hello Alex
and whether it is lupus related or not, when anything does a number on my lungs and inflammation sets in, my voice goes hoarse and usually progresses to no voice at all. The longest time was after a nasty respiratory virus, and I literally was unable to speak for 6 solid months, not even a whisper. Wow did I miss answering phone calls! Voicemail is a good thing to have in times like those.
Sun and heat exposure are mentioned by so many people as bringing on worsening symptoms. Sunblock, clothing that covers you well, and a wide brimmed hat can minimize your exposure. I LOVE to garden, but make sure I am not outside between about 10 a.m. and 4 p.m., and seem to have an easier time of things.
For me, even being exposed on a car ride is enough to make rashes rear their ugly heads. Look at the right top corner of the page, and you can type in sun, sun exposure, etc, and find some tips and tricks that will help you from previous discussions. (note to self: learn how to place direct links in a post to another helpful post)
You are very much not alone, and putting together sun exposure with symptoms getting worse all on your own makes you one smart cookie! I hope you feel better soon. warm hugs, Perplexed.
Thank you for the info. Very helpful to know!
Amy Chaney said:
I have the same issue. During a flare I can loose my voice for days. In fact I've come to use it as a gauge. A lot of days , my voice will become hoarse and I'm unable to produce any volume. So, I know if
Starting to loose my voice , I need to slow down. There are periods of time that it happens on a daily basis. Usually when in the evening when I'm tired. My rheumatologist said like other parts of the body become inflamed, the vocal cords can be inflamed. So, loosing one's voice is due to inflammation of the vocal cords. I hope this helps you not to feel alone. If you have a symptom that you're unsure about , the best course of action is to bring it to your rheumatologist at your next appointment and she/he can either identify it as a symptom she recognizes or help you find the cause of your symptom. By the way my rheumatologist also said that there are no two identical cases of Lupus. So, just because the doctor hasn't yet encounter a particular symptom , doesn't mean it's origin isn't Lupus.
Good luck at your appointment. Please keep up posted on your results!!
lionessp said:
I recently went to my rheumatologist! He's very concerned about my voice. Diagnosied two years ago, he asked me how long had my voice been hoarse! I replied, many years ago. Im hoarse 24/7. My throat or any other parts of my mouth doesnt hurt. But about two weeks ago, i was told that something could be resting on my vocal cords and that i should see an ear, nose, and throat specialist. Well let all know the results! God's Blessings
It is so good to know that I am not alone in this! Last time this happened was when I went to Sea Camp with my fifth grader as a chaperone. I lost my voice and was very ineffective in watching the kids because I was trying to shout and hardly any sound came out. It was awful, they thought it was kind of funny. Anyway, there was a lot of sun exposure then too. I also felt sick and slept a lot more than the other parents and had a hard time getting up. Thanks for your input, I really appreciate hearing about other peoples' experiences. This site has been so helpful to me. Thanks again.
ohsoperplexed said:
Hello Alex
and whether it is lupus related or not, when anything does a number on my lungs and inflammation sets in, my voice goes hoarse and usually progresses to no voice at all. The longest time was after a nasty respiratory virus, and I literally was unable to speak for 6 solid months, not even a whisper. Wow did I miss answering phone calls! Voicemail is a good thing to have in times like those.
Sun and heat exposure are mentioned by so many people as bringing on worsening symptoms. Sunblock, clothing that covers you well, and a wide brimmed hat can minimize your exposure. I LOVE to garden, but make sure I am not outside between about 10 a.m. and 4 p.m., and seem to have an easier time of things.
For me, even being exposed on a car ride is enough to make rashes rear their ugly heads. Look at the right top corner of the page, and you can type in sun, sun exposure, etc, and find some tips and tricks that will help you from previous discussions. (note to self: learn how to place direct links in a post to another helpful post)
You are very much not alone, and putting together sun exposure with symptoms getting worse all on your own makes you one smart cookie! I hope you feel better soon. warm hugs, Perplexed.
yes...when i get too tired...one of first warning signs i can get is sound like i am losing my voice, getting a cold, so stuffiness. Both were checked out in great detail by ENT doctor when this first started happening and i also was diagnosed with lupus within that year and the doctor said it had to be tied in to lupus like i thought.
I have noticed now that I am not working in air conditioned building that it does not happen as much but will in the car if air is on....so something in air conditioning does trigger it partially at least. It still happens not as often but i now can rest as needed too so that also could be explanation.
BUT you are not alone....i lose my voice completely if keep talking to friends etc. Rest and drink lots of fluids...should help you not to lose it. Warm water with salt in it also helped me in the past. good luck
OOH..you know there are throat things that doctor can give you to save your vocal cords or you might just need to get more rest..as simple as that! But speak to Ear Nose and Throat doctor about this....have your rheum recommend one if you like him or any doctor you like a lot. i wish you the best and hope you can sing as much as needed.
My glands in my throat get flared up often. I lost my voice several times because of it. I Save my voice as much as I can on the days those glands swell.
I also am prone to losing my voice. Mostly at night if I am out and if the temp goes down suddenly or there is increased moisture in the air. It usually returns in the morning. We all have different triggers and reactions. But I never knew others had this problem.
Over the past 10 days I have had on and off nausea and stomach pain. I'm on low dose Methotrexate. Wondered if the drug could do this? After reading your replys, I think perhaps this is acid reflux due to a flare? Took Prilosec for a few days but it helped only just a bit.
Just yesterday when I was researching RA (which I'm being treated for/as if I have it), I caught a bit about this. It said that there is a joint that controls your voice, and that it can become inflamed just like any other joint, thus making you hoarse. Let me see if I can find it.... aha, found it! It's at the bottom of the page here. I can't say for certain if this is what anyone's trouble is, of course, but I found it interesting, since I didn't know there WAS a joint there. It would make sense that it could cause hoarseness during a flare, though. Hope this helps a little!
I did not know there was a joint in there either, so that makes since. a very good article Thank you for sharing !!!
Talencia said:
Just yesterday when I was researching RA (which I'm being treated for/as if I have it), I caught a bit about this. It said that there is a joint that controls your voice, and that it can become inflamed just like any other joint, thus making you hoarse. Let me see if I can find it.... aha, found it! It's at the bottom of the page here. I can't say for certain if this is what anyone's trouble is, of course, but I found it interesting, since I didn't know there WAS a joint there. It would make sense that it could cause hoarseness during a flare, though. Hope this helps a little!
I was wondering why my voice change when I was diagnosed. I have been diagnosed over a year now and I'm still experiencing other symptoms out of the norm, but my voice was one of the things I kept complaining to my husband about. My husband use to ask why is your voice sounding like a man and sometimes I can barely talk, but mine seems to be more often then usual. Now we just take it to be my normal..............Please post to let us know what you find out, thanks for sharing.
Carol