Singers with Sjogren's

[DonnCast]

Hello! 
I just joined this forum and I am hoping to gain some insight to my most troubling symptom... a break-down of my ability to sing!  I have been living with Primary Sjogren's for 16 years, and over that time have seen my vocal abilities diminish.  I play piano, keys and am a singer/songwriter.  Singing has always been a big part of my life.  Although I have been on Plaquenil, and managing my symptoms to the best of my knowledge and ability, there has been a gradual decrease in vocal strength and endurance.  Add to that, constant coughing and hoarseness, with ongoing respiratory inflammation. 

And now I have just been diagnosed with adult onset asthma and am on an Advair inhaler twice a day.  But the pulmonologist assures me that this is NOT related to my Sjogren's !?  At this point, I am pretty much at my wits end about what to do for my voice.  Are there any singers out there who have worked through these kinds of issues with any success?  Any tips?

[Nymph]

I am a teacher and also enjoy singing, although not professionally. I do have some struggles with horseness, although my dryness is fairly well-controlled with NAC. Thus first step would be to investigate a med or supplement to help with dryness.

I also use a netipot regularly, and carry a nasal saline spray with me to use several times a day. Nasal irrigation helps keep the throat moist. In between, I sip on water or hot tea continually. If I can't do that (e.g. not enough time for bathroom breaks) I suck on a sugar-free candy.

Also, take frequent breaks and don't use your voice continually for long periods of time.

Hope this helps! Talk to your doctor. A good doc will be concerned that this is affecting something so important to you.

[nannysbaby]

I'm not a singer professionally either, but I also have noticed a decline in the strength of my voice and how long I can use it.  If I am trying to sing, I do better on the first verse than on the third verse.  I can't even come close to what I used to do.  I take hydroxychloroquine and it keeps me okay in the daytime, but at night I get very dry in the throat.  Drinking water and taking something doesn't seem to help the problem much.  Sorry I can't be more encouraging, but if I visit with someone even for a couple of hours, my throat begins to get sore. 

[jazzlover]

I'm so sorry this is affecting you .. especially since you are a professional. I am a song leader at our church and I do "OK".. I now have asthma too, but it hasn't been too bad for me.

I notice the changes, but hopefully our congregation does not!

Stay hydrated, that is for sure!

[Navigator]

I have also seen my singing ability falter.  I now sing in community choirs.

Several years ago we had a young lady who aspired to be an Opera singer on this forum asking questions.  I was heartened to see that the replies were to go for it....and not give up.  She was still very young and the degree of seriousness of her symptoms were yet unknown.  The impact of SJS on voice is all over the map.

Your songwriting may need to take a more prominent place in your life as opposed to professional singing but there is a whole world out there who would benefit from your talents in a less judgmental environment.

Everyone on this forum has to find a way to live with SJS . And we all do our best.  I hope you can find a compromise that you find fulfilling. I understand your distress...

[SunshineDaydream]

My speaking voice gets wonky when my mouth and / or throat get too dry, so I couldn't even imagine trying to sing professionally. I definitely function better in that regard when I take saliva producing medication. Have you tried Evoxac or Salagen? Also, having a humidifier near me while I sleep is very helpful to avoid waking up with dry or sore throat. You might want to try that during the daytime as well as at night. Another thing you can try is dry mouth mouth spray which mimics saliva.

Or you could be like Aretha Franklin and demand that the venues where you are scheduled to sing turn off the air conditioning hours before show time to protect vocal cords. 

[Sharon]

Hi DonnCast,
I understand your pain and complications, but have to wonder if all the vocal difficulties
you mention can be attributed to the SJS. As you've been singing for 16 years, I'm certain you're aware that the vocal cords may go though "wear and tear" on their own with age and/or overuse/misuse, so that may be something to consider.
That said, sounds like the asthma could definitely contribute to the vocal weakness and the SJS to the dryness issues. What has helped my coughing and hoarseness has been daily use of the supplement Ubiquinol  which I have already mentioned many times in this group. As long as I keep off the antihistamines it continues to work for me.

[irish]

I do think that the singing issue is related to the autoimmune disease---maybe several different aspects of the disease. First of all, reflux can cause irritation in the vocal cords. Secondly, people with Sjogrens and other autoimmune diseases often have hypothyroid and Hashimotos or autoimmune thyroid disease. The third thing is the lack of the saliva causes the cords to get dry and with the singing and talking there is pain, coughing and swelling.

I started having bad issues back in the mid 80's and saw ENTs with little help. They would all look and say that my cords were swollen and inflamed and I was to avoid singing and talking. Made life difficult. I loved singing and directed choir so it was important part of my life. I had sung in several trios and quartets, duets over the years and losing my voice was very hard for me. I have not been able to sing since 1988.

My cords feels so stiff and tight and I went through several years of bad neck pain or throat pain and it hurt a lot to even talk. That ran its course eventually but the voice was gone also. I been on plaquenil, IVIG for about 10 years plus thyroid medication and 10 years of prednisone and now doing pulse steroids IV to save my hearing from autoimmune ear disease. Deaf in one ear and losing it in the other.

I don't know if there is an answer for the voice. I have times a can hum a little or sing in a very small range. Doesn't last long though. The cords feel so stiff that they can't vibrate. There are quite a few people on this site over the years who have lost their ability to sing. Using the search button using losing voice threads or something like that, you may access some of the older posts. Good luck to you. Irish

[Kathy57]

Hi,

I developed adult asthma before I was actually diagnosed with Sj?gren's, however, I believe it is all related to Sjogrens because I had lots of symptoms even then.  Sjogren's causes dryness of the lungs and when I get really dry, is when my asthma kicks in.  Wind, fans, air conditioning, and dry heat all aggravate my asthma.  All I need to do is roll the window down in my car and the wind in my face starts me coughing.😞. Very frustrating.

I agree with Sharon on the Ubequinol.  It has helped me but I have lost my singing voice as well.  The coughing and the hoarseness - I can truly empathize with you about that.  I'm surprised that you have been able to sing the last 16 years.  That seems almost a miracle to me.

Hang in there!

Kathy

[DonnCast]

Thank you all for your words of advice and encouragement!  It means a lot to be able to dialogue with people who understand this! Sometimes I feel like I am going crazy with these symptoms and people just don't understand.....

@Nymph:  I cannot use the NetiPot, because I get water trapped in my ears when I do - very frustrating!  but like you,, I try to stay hydrated and always have my water on hand. 
@Nannysbaby:  Thank you for your empathy! 
@Jazzlover:  I also sing worship music in my church from time to time, but our worship leader over-rehearses us, and I simply do not have enough voice to last the whole morning!  I try to reserve my voice as much as possible. 
@Navigator:  You hit the nail on the head!  I am investing much more time and energy in my songwriting, but still want to sing my songs, so that part is hard.  Sometime, with a mic I do pretty well, but other times the voice is in and out.  So I am singing more contemporary, and less classical these days. 
@SunshineDaydream:  I used both Salagen and Evoxac in the past, but have not used for awhile.  Thanks for the reminder - I think I will see about getting back on one of those.
@Sharon:  Yes, I am aware of "wear and tear" on the vocal chords - as a trained singer, I try to employ good vocal technique, but of course, health and aging etc. etc. also take their toll.  Thanks for the tip about Ubiquinol - never heard of that!  I will look it up and find out about it. 
@Irish:  I was very saddened reading of your vocal loss, especially knowing you have used your voice over the years, singing and directing choirs.  This is a huge loss of something that brings us joy - and I did not know that Sjogren's can cause hearing loss as well - very sobering.  I hope your medical providers are able to stop any further loss for you. 
@Kathy:  I was shocked to find out that I had Adult Asthma, and I think it MUST be related to the Sjogren's... I cannot have any air blowing on me, either.  Thanks for the nod to Ubiquinol - I just ordered some from Amazon!

Again, thank you all for responding to my message - I really appreciate it!

[katie1111]

For me, one of the most difficult parts of dealing with autoimmune issues is the changes it causes in my self identity.  I was always very healthy, but not any more.  I was an RN and enjoyed my work and my volunteer work at the Red Cross.  I have had to give up my nursing license and with it my Red Cross work primarily due to problems with my cognitive thinking.  It hurt and in some ways still does, but the world is full of wonderful opportunities.  So I have found things I can do - I teach remedial reading at our local jail and I volunteer at place called Give Kids World, which is a vacation resort near Disney for children with potentially fatal diseases.  It is not nursing (and I still miss the nursing) but it is very rewarding.  You have to concentrate on what you can still do and go from there.  Luckily it is big world with lots of opportunities.

Katie1111

[irish]

Just to let you know that Sjogrens may be able to cause hearing loss and I always thought that it was the cause. However, I just had more in depth testing and I have 2 separate antibodies and both of them can cause hearing loss. Medical info is so much improved since I first had the loss in my right ear back in 1997. There was not good treatment back then either.

Now the treatment I am getting is rapid pulse steroid therapy which is 1000 mgm  solu Medrol in 2 hours.

I wanted to clear that up about the Sjogrens. I have not heard of actual specific claims of hearing loss due to Sjogrens. If anyone is having hearing loss and has current autoimmune disease please ask the doc to refer you to ENT or immunology and further in depth testing. The solumedrol is the only thing that can halt the hearing loss at this time. Good luck. Irish

[bettyp]

I'm not a singer but a long time musician- French horn. Over the past year I've had increasing difficulty with spit and within 20 minutes I had great difficulty maintaining any semblance of tone. In total desperation several weeks ago I tried acupuncture with amazing results! I have my abilities back and much increase in saliva. I wish I hadn't struggled for so long before seeking help. I've also experienced some relief from my many neuropathies. It's worth a try rather than giving up on something you love.... Betty

[SjoGirl]

I too have experienced a decrease in my capacity to sign which has been a great disappointment. I was never a professional, but have been in opera theater or signing groups for years (I majored in music in college) and now can't make it through verse three of a hymn some weeks.

Maybe a vocal coach could help? Training in the Alexander Method, which focuses on posture, might also prove of interest.

Good luck!