[Kav]

Hey all,

I just wanted to know if anyone has had problems with vocal chords and lupus and whether it has change from initial manifestation.

I first suffered hoarseness about 2 yrs ago, it was first assumed I had vocal nodules and gastric reflux, but speech therapy didn't work. It now appears that my left chord now doesn't vibrate as much as it should. The vocal nodules appear to have shrunk though, meaning the voice therapy worked in one respect, but hasn't alleviated the hoarseness due to the paralysis. I am now awaiting ENT to do a biopsy, but they don't think there is much they can do, and suspects it is related to my lupus. My chords are also swollen, which makes my voice even worse, but the swelling is probably down to a persistent chest infection (which i've had for 2 months! so being referred to respiratory clinic).

steroids and NSAIDS don't appear to affect the quality of my voice and neither did the hoarsness appear after a flare up.

In all other aspects, my lupus is pretty much under control. This is quite annoying seeing as I need to talk for my job! The doctors aren't overly concerned yet, because it's not my vital organs, and i can still be heard, but still, i'm fed up of people asking me if i have a cold. To some clients i've had a cold for 2 years! Also my voice breaks a lot, so i have to repeat myself all the time.

Any info much appreciated!

 

[lazylegs]

Hi Kav,

The following site might be of interest to you. It does mention inflammation or scarring between the vocal chords being a possible cause. Also some viral infections can cause damage to the nerves resulting in the same symptoms.

http://www.mayoclinic.com/health/vocal-cord-paralysis/DS00670/DSECTION=causes

Good luck with the biopsy. Let us know how it turns out.

Take care,
Lazylegs

 

[birdie]

I am constantly losing my voice, even went and had a camera to see if there was anything causing the problem but all the consultant could come up with was sjogrens, which didn't surprise me at all. I could have told him that. The annoying part of this for me is the fact that I can be holding a conversation with someone and the next sentance there is nothing only a squeak. So know where you are coming from. Hope you get some relief soon.

 

[LadyLily]

I had something called 'vocal chord dysfunction' towards the end of last year following a long chest infection that refused to go away. It was terrifying as what happened was the chords go into spasm and block the throat thus preventing you from both breathing and talking so you can't ask for help! When it first happened I thought I was going to pass out. My GP was less than helpful and initially prescribed a ventolin inhaler and told me I was panicking because I had an asthma attack. She later agreed with me when I found out about VCD and that the inhaler did not help at all during a spasm. I found that there are some exercises that you can do to release the spasm in the throat - here are some websites I found helpful:

http://www.cantbreathesuspectvcd.com/
http://www.chestjournal.org/content/122/6/2246.full

Just knowing that there was something I could do actually helped me a lot and the problem gradually went away after about 2 months. However, I do feel that I have a weakness in the throat area too - have no idea whether it could be related to lupus but I do frequently have swollen glands in the throat and a need to frequently cough. Is this familiar to others too?

Lily x

 

[Shera384]

I am just starting to get my voice back to normal after a two week bout of coughing, sore throat & hoarseness, I always seem to talk with some degree of hoarseness, it's always been put down to my Asthma, it never occured to me it could be anything else, normally the doc sticks me on steroids for 7 days, & that sometimes helps, but I'm on them already so they just upped my steroid inhaler to 4 puffs.

Lily
I get regular bouts of swollen glands, & always feel the need to cough especially at night, but I smoke so I thought it was that, or the Asthma.

Or should I say did smoke :hehe:
I stopped on the 1st May, so only my second day, but here's hoping I can do it this time :rotfl:

 

[Kav]

So an update.

I had a biopsy on my vocal chords, they removed some nodules, which has eased some of the huskiness. However, the deposits on my left vocal chord have no diagnostic features and my left chord is still slightly paralysed. So the default answer is "this must be caused by your lupus" hmmm. As my voice has improved a lot, they are just going to monitor me to ensure there are no changes.

I did learn that the area surrounding my chords has a tendency to swell which affects the quality of my voice.

 

[lazylegs]

Hi Kav,

Glad to hear your voice has improved from what it was before. Thank you for the update.

Take care,
Lazylegs

 

[marya0]

hi

i had the same problem last year , they did a biopsy last year , everything was fine , told to stop smoking , which i have , had not been dx with lupus at this time , when i spoke to my doctor he said that the lupus is the cause ,hope you get good results take care mary

 

[Merlot]

Hi, I'm new to this lupus site and was surprised to see people with one of my problems. For the last 4 years, I frequently develop a very weak voice, sometimes slightly raspy -and yes, I tell people I've got a little cold. It always gets worse when I'm fatigued and always occurs when I'm ill. It never lasts throughout the day, only for periods of time. I went to the ENT yesterday for a sinus problem and trigeminal neuralgia. My voice was fine while there. I mentioned the symptom and he just smiled. I feel like I need a sworn statement from family and friends sometimes to be taken seriously. Anyone else had this problem with a good solution?

 

[Kyphi]

I woke this morning and found my voice had dissapeared?
Just another lupus twist and turn it seems - crappy really!

 

[larryd]

I woke this morning and found my voice had dissapeared?
Just another lupus twist and turn it seems - crappy really!

Hi - I developed a similar condition last March where my throat hurt and I had a hard time breathing and talking. I initially thought it was a cold and upon many visits to the doctors have found out that I have VCD.

I have had lupus for 8 years and wonder if the two are somehow related.

Now six months later I still have some pain in my throat and lungs and have no real cure at hand of how to stop or the VCD.

Any ideas.

 

[chickadee]

this is interesting. I am just waiting to go for blood tests to test for lupus and other things, and I have hoarseness, have for years, but has recently gotten worse. i was told also that it could be reflux. sometimes i run out of air when i am talking. humm....makes me wonder....

chickadee

 

[Older&Wiser]

I have chronic hoarseness, difficulties swallowing and the need to clear my throat a fair bit. The problem fluctuates in severity and sometimes disappears. Sometimes I've noticed it is worse when I'm under stress or not feeling well. The ENT doctor found no cancer or nodules on my vocal chords, and diagnosed gastric reflux, even though I do not have any symptoms of acid reflux (there's apparently an 'invisible' form). An endoscopy confirmed oesophegitis (inflammation of the oesophegus) but I wonder if its the lupus that is causing the inflammation? I recently found out about other women with lupus who also suffer from hoarseness. The thing is - I want to sing in a choir, and I also need my voice for my job as a teacher. I'm going to consult a professional singing teacher to see if there are any exercises I can do to put less strain on my voice, but I may have to give up on my desire to sing. I'll report back on my progress. Hope to hear from others.

 

[zeppelin]

I have also experienced problems with my voice recently. Hoarseness, caughing at night/in the morning, soar and a need to clear my throat a lot. It's a problem since I'm a teacher like you Older&Wiser. Really had no idea tyst it could be related to Lupus? I'm going to mention it to my doctor spes when I go there next time.

 

[liveseymum]

I too have hoarseness, swallowing problems etc.... i sound like a man at times too, especially when tired.
I go again for endoscopy on the 24th august (have to have it done under general). previously dx lupus for 8 years, last endoscopy i was dx oesophegitis, and aesophagal web growth. I always have just assumed its part of lupus, yet my rheumy has never confirmed this. Also there are posts on here too about schleroderma, i think i will be asking the endoscopy doc for any relevance as 12/18 months of not being able to swallow foods only liquid diet has been dire to my health. Hope someone can find us answers.

 

[Older&Wiser]

I use asthma puffers and they seem to relieve the coughing, hoarseness and soreness a bit. Thanks for responding. I look forward to more dialogue on this forum.

 

[Older&Wiser]

Thanks for the reply, too. I thought I had it tough with food sensitivity to amines as well, but your problem of only being able to swallow a liquid diet would make life pretty tough. I do hope you find some relief soon.

 

[Jaff]

Hi, I posted the original post, but forgot my password so had to sign up again! So 2 yrs on, I've had the vocal nodules removed, and I have to say, my voice is much better. There is a but....it's still husky, but no longer croaky. i find that if i get enough sleep, am hydrated well and take my steroid inhaler, the vocal chords work best. ENT specialist said that my chords are generally inflamed, so probably lupus related. I've now also developed scleroderma like symptoms, drs sat could be MCTD, so could be that causing vocal problems rather than lupus.

 

[lazylegs]

Thank you for the update. Glad to hear the removal of the vocal nodules was a success. Hopefully no further issues develop in this area.

I understand it was not intentional but it is against the guidelines to have multiple accounts. Please contact Joanne, the site administrator to have the two accounts combined under one name.

Take care,
Lazylegs

 

[debatat]

Hi Jaff, thank you for the update. Lets hope they are able to keep things under control for you.