Patsy Cline singer diagnosed last month

[rudytudy]

I sing about an hour a day 3 to 5 times a week as my full time job...been doing it for many years.  Now have to sip water constantly to get through songs and last week I found my voice was actually a bit inflamed after days show.   ANA blood test done my a neurologist due to blurred vison, imbalance, muscle weakness/pain, extreme fatigue, foggy thinking.   No
SLE markers but had a high SSA count.  Went today to a rheumy and he said to watch my symptoms and see how this progesses.   I got a prescipt. from my Throat doctor for Evoxac but don't think I need it yet...am using OTC dry mouth products for now.  Today Rheumy gave me prescript. for GABAPENTIN I think its called.  I'm not going to get that filled..it's a ANIT-CONVULSIVE for treating Fibromyalgia.   He said since my Sjogrens sicca symptoms were not severe yet that my muscle discomfort my be Fibromyalgia....so I'll take some Aleve or Advil...how about that !    I couldn't  believe he was so quick to prescribe a drug whose primary side effect is SUICIDAL THOUGHTS.   So anyway, here I am.  Minor symptoms at present but I must think of another way to make a living.   Anyone having problems with singing or their voice?? 

[anita]

Hi and welcome to Sjogren's World!!

I don't sing (couldn't carry a tune even if I had a bucket--lol), but it does effect my voice.  I find I'm hoarse quite often, sometimes daily.

The rheumy did sound quick to prescribe something for the fibro, but it's a relatively common medicine to use for this.  The side-effect you mentioned is quite rare and I don't know of anyone who actually had this effect (and many people here take it).  But of course it's one you should be aware of.   The most common side-effects are weight gain, sleepiness, & dizziness, but usually subsides as your body adjusts to the medicine.  If you do decide to start it, be sure to follow the dosing carefully and if you change your mind you MUST taper off it slowly.  I did not find it helpful for my nerve pain, but many people do.

I'm surprise that he didn't prescribe Plaquenil for the Sjogren's itself.  That is something you might want to consider to help with the fatigue and joint pain.  It also helps to slow the progression.  I have less dryness since being on Plaquenil, but don't know if it truly is the result of the medicine, since it's not typical to help dryness (although others share this benefit as well).

Anyway, glad to have here, but sorry for the reason you found us.

Anita

[Joe S.]

Welcome to the forum, rudytudy. Ir you haven't read "spoon theory" I suggest that you do: http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I think management is a big part of dealing with your symptoms. Wear your polar fleece mumps scarf at night. When drinking water remember to sip, swish, and then swallow. It is very import, as long as you live, to remember to ... breathe.

[quietdynamics]

As you are already sipping water and experiencing dry mouth your Dr. prescribed Evoxac " You may start to feel some benefit in 1 to 2 weeks. However, it may take up to 6 weeks to feel the full benefit. " and you may probably still need to sip water, use sugar free hard candies/ gum to create saliva.
I take Gabapentin for pain, which will if left to interrupt sleep and continue for days creates a downward cycle that is best avoided.
I do not have suicidal thoughts. As a matter of legal disclaimer if a member of a study experiences such thoughts it has to be documented ( but, who can say if the person had pre-existing psychological markers?).  Even OTC, such as as common aspirin, which is not known how it works has a  list of side effects.
I have had very good results with Cymbalta, but, others have not. Sjogrens is not a cookie cutter symptomatic disorder. Fortunately, this forum has a search function, should you need to look for information, as well as resources and of course the posts here.
So the bottom line is to weigh the benefit and quality of life the prescription  can afford you.

Welcome and our best wishes.

[Cheryl]

Rudy,
I'm sorry to hear that your voice is being affected by Sjogren's.  It must be scary, since singing is your source of income.  Yes, my singing voice has changed.   It has been gradual (over a couple of decades,) not overnight.  I find that I can sing better at night than early in the day, but my voice is not strong, and I have less range than I used to have. 

I wonder if taking the Evoxac would help your voice by keeping your throat lubricated.  It is believed to help systemically, more than just in saliva production. 

Welcome to our site.   I hope that you find help here.
Cheryl

[rudytudy]

Thank you everyone for your input..and thanks Quietdynamics for your info. on Gabapentin.
Lots of meds to consider.  I'm so glad you all are here. 

[irish]

Welcome to our site. I am so sorry to hear that you are another person getting a sjogrens diagnosis. I think the doc was wise to order the gabapentin also. Especially if you are having nerve pain around the body.

The one thing I am wanting to share with you is the importance of getting started on the Plaquenil. I know that you are suffering from minor throat issues at this point, but as a person who has had several autoimmune diseases that were diagnosed for almost 40 years, I have to tell you that I totally lost my singing voice back in 1988. My voice was very important to me as I sang a lot at church and directed choir for a few years.

I would think that if you could get started on the plaquenil as soon as possible this could help. Plaquenil has a very strong anti-inflammatory effect and you may well find that your voice would benefit from this medication's effects. I hope that you can get some answers soon. Irish

P,S, I don't want to scare you, but do want you to be as proactive as possible so that you can save your voice.

[stephL]

I second what Irish says here, be proactive and take the bull by the horns! It changed my voice range, and before treatment I would get laryngitis often. Sipping water constantly can wash away the natural mucous secretions in your mouth and throat, so it can be counter productive. What you need is saliva, which Exovac can restore for you. Plaquenil is usually the first treatment prescribed for Sjs, so ask your docs about it. I'm glad to hear they are taking you seriously and so motivated to help you. Keep us posted on your progress.

[A66eyroad]

I used to sing in a restaurant with a friend of mine, it was for three hours on Monday nights after work. This was before my diagnosis, but I was having a very hard time with fatigue with both the singing and my regular full-time job. I sadly gave up the gig. My partner continued with the gig for two more years.

Our group was called Three Together. And there were only two of us. Aren't we clever?    

Anyway, I find now that I get a terribly sore throat the following day if I spend more than about an hour singing.

I bet Evoxac would be very helpful. Are you on any medicines at all for Sjogren's?

Rudy, welcome to this wonderful forum! You'll find lots of very helpful people here. You'll get lots of support and answers, and also lots of opportunity to help your fellow Sjoggies!

[jazzlover]

Welcome! Yes, I have trouble singing. I'm a song leader at our church. I keep water next to me. My voice is rather weak at times and scratchy when I'm really dry.

Gabapentin will only make you drier!!

They do sell a singer's spray of some kind in the health food store. I haven't tried it since it contains honey. I was once a dresser for a famous singer and she used lemon and honey tea. I used to make it for her. Best to use real lemons and honey... (who woulda thunk?) Drink it warm, of course.

[annken]

are you REALLY Patsy Cline?  anyway that aside, sorry i refuse to take anti-depressants for fibro even though i go wild with pain.
i have had experienced a woeful lot of stigma for once being in the psych system and got badly treated for many of my physical symptoms.
i am now recently diagnosed with Asperger so i even got an apology from the psych system after over three decades. now anything of a psychiatric nature is completely taboo with me.
i take paracetamol, and should take more of it.  i feel over most of my life i was on too many meds and i love life now and am well, just feel i want to cope well with what i have without more meds.  glad i wont take these ones, i have had to make many decisions.  oh, if water, sip it, never lash it back, i dont find water that helpful and must find a saliva replacement that i like, that isnt all gluey and sticky in my mouth!

[jazzlover]

annken....gabapentin is an anti-convulsive,  not  for depression

it's also used for nerve pain

[susanep]

Welcome, and I love Patsy Cline.  I hope you get on some meds that help you.  You have a lot of good advice, and let us know what you find out.

Please come back, because we all support each other. 

susanep

[dewe]

Hi there,
I too am a singer with SjS. For years I have had issues with losing my voice due to out of the blue inflammation.
However, I have never lost any of my range and I manage the complications of vocal chord dryness almost obsessively.
I keep a strong voice by...
- Keeping constantly hydrated
- Using steam inhalations when I'm fatigued
- Avoid talking in noisy environments - actually I just refuse to talk at all when my voice is dry.
- Avoid alcohol. Really helps.
- Rest
- Using good technique (avoiding all strain in the throat).
- oh and sipping luke warm water is better than cold.

Good luck. Don't be discouraged!
X

[rudytudy]

Thanks everyone for the good advice.  For 20 years I've had fatigue/muscle/joint/flu-ish flare ups and the joke's been that I'm 'very delicate'...can't do much physically strenuous or I'm down for a day or two.  Serious imbalance/dizziness for six years.  I've been dry when singing for two years.. I just thought this was me.
Then this past summer I started serious brain fog.   Very slow to respond to questions, slow to remember where I was driving to or what my name is.  I always remembered within 20 seconds or so but to be SO slow was alarming.  Had MRI in October...Neurologist did ANA blood test in November and found high SSA and was diagnosed with SS.  Now I'm putting together like a puzzle all the symptoms I've had for a lifetime.  My hair has been thinning a lot for a year now...Dermatologist found some small bald patches and gave me liquid to put on them...hair is still thinning.  Rheumy is having me get a cervical MRI next week to check for whatever they check for.  My Dad had Soriatic Arthritis, his mom had RA...my Mom passed from Pulmonary Fibrosis.  My Aunt had Non-Hodgkins Lymphoma...so lots of Rheumatic things in the family.
I'm going to see what the cervical MRI says on the 16th and see what my Neurologist and Rheumy say later this month.  I'll discuss Plaquenil with my Rheumy....thanks all...I'll let you know what they say.