I am new, recently diagnosed, and the Rheumy told me that I need to think of another profession?

Hi everyone,

I'm new here, and before I say anything I just wanted to say thank you ahead of time if you plan on reading everything.

On Monday, 4/13/2009, I saw the Rheumatologist for the first time. My Neurologist wanted me to see this doctor because my ANA came back positive with a titer of 1:80 (I know it's low), my Vit. D is very low, and my Pyruvate is extremely high. Not to mention there are some other lovely things going on.

This is the 12th doctor I have seen since July 2008 after many months of trying to figure out what the hell is going on with my body. I have to say, she was the nicest of all the doctors I have seen, she didn't rush me, and she wanted to know everything that happened. The only downfall is she kept asking what I did as a profession, how did I fall into my profession, and what inspired me to choose this path?

Well, I am a musician, and I went to school for classical singing. I still want to go back to school for my Master's in Opera Performance. I'm only 24, and I have so much that I want to do with this passion of mine.

My Rheumatologist said to me, "The reason why I'm asking you all these personal questions about your singing and profession is because I feel that you need to start thinking of a plan B soon. I feel that your singing should become a hobby instead of your main focus". To make sure I heard her right, I asked her, "Well, let me make sure I understand you, are you saying that whatever is happening to me now, will get worse?" and she said "Yes". At that moment she told me that she believed that I have Secondary Fibromyalgia, and it was possibly caused due to stress and an autoimmune disease such as Raynaud's, Sjorgen's or Lupus.

Right then and there, I felt like my world was kind of collapsing. I knew that there was something wrong with my body, but I didn't realize it could be to that extent. I am Epileptic, but my seizures are controlled with medicine, so I'm very fortunate for that. However, I was also hurt that the doctor would say something like that to me about the love of my life. Personally, I don't know if I really agree with her diagnosis of Fibromyalgia, but then again maybe I don't know what it's really about.


I've made a list of my symptoms that I've been experiencing since July 2008, and I would appreciate if anyone could tell me if it does sound like Fibromyalgia or not?

Symptoms from July 2008 to Present

1. Stiffness in the back and front of the neck.
2. Stiffness in and around the jaw line.
3. Difficulty opening the jaw due to severe muscle spasms within the masseter and temporalis muscles.
4. Sometimes extreme amount of pain caused from the spasticity.
5. Visual changes which includes: blurry and sometimes double vision; “flashing lights” are seen in ambient lighting; when the facial muscles are spastic, there is a black dot/smudge in the right eye, which will last during the episode.
6. Heat intolerant: showers; exercising; walking in the sun above 70 degree temperature; sun bathing; heated car seats.
7. Fatigue
8. Weakness
9. Loss of Balance
10. Sweating profusely at nighttime, and not knowing about it until I wake up in the morning, and I find myself drenched in sweat.
11. Loss of short-term memory
12. Mood changes: including, depression; paranoia; trouble sleeping at night; hard time concentrating.
13. Symptoms magnified dramatically about one or two weeks prior to my menstrual cycle.
14. Spasms in the knees to the point where it can be debilitating.
15. Fasciculations throughout my whole body.
16. Vibrating/buzzing sensations mainly at the base of my feet, the back of my knees, and my fingers.
17. Tingling sensations in my toes, feet, and fingers. This feeling is more similar to tiny ants crawling on your skin.
18. Burning sensation on my left ankle.
19. Cooling sensations on my left thigh.
20. Eventually, spasms began to occur in my forearms, thighs, feet, and hips.
21. Spasms felt in my colon, which were very painful.
22. Spasms in my upper mid back, which make it difficult for me to breathe. It feels like there’s something restricting my chest cavity and diaphragm.
23. Urine incontinence
24. Chest pain, specifically near my heart.
25. Electric sharp-shooting pain running across the back and the front of my head.
26. Pain behind my eyes to the point where I have to close my eyes to try and make it feel better.
27. Sensitive to cold. I get cold very easily.
28. My fingers and toes will turn blue when I am very cold.

Anyway, I thank you again for taking the time to read this, and I would appreciate any help that you can give me.

If you can find a way - do it!! Unless your singing is making you worse, don't give it up. You don't even have a firm diagnosis yet. I'm not sure why your doc thinks you may have to give it all up. Loving what you do helps you through the difficult times. Next time you see the doc, ask why she thinks you should change careers and what, specifically, she thinks you'll be able to do. She may have misconceptions about singing as a profession.

I wish I could sing, the fake people on the Rock Band video game Boo me off the stage!

That said, many of us have had to change professions so a "plan B" isn't the worst idea. I used to be an engineer but brain damage from Lyme Disease and my ever present fog made me change careers.

I had many of the symptoms you listed when first became ill. I was eventually diagnosed and treated for Lyme Disease and many of these symptoms went away. Negative tests do NOT mean that you don't have Lyme. Check out the info on the Lyme forum and see if your symptoms fit.

Good luck.

You said this was a neuro? I'm assuming that they did an MRI on the brain? I ask because there's several things that could cause these signs.

Most of those symptoms are manageable via medication and lifestyle changes. I would encourage you to ask the questions suggested as to what she seems to think is going to happen if you continue to sing.

Unless she has some exceptional reasons, I would suggest following your passion and continue singing. This is not something that will be able to be walked away from. You will always have the drive to sing and I encourage it. For me it's something that allows me to relieve stress. Regardless of what may or may not be wrong, stress will make anything worse.

Hi Singing and welcome. I'm surprised she didn't rule out lupus and any other auto-immune disorder before giving you a dx of fibro since fibro can mimic them. Most of us have to go through a protocol of testing and rule out everything else before we even hear the word fibro from our docs. I hope that everything else comes back negative for you.

 

Don't give up your dream cause she said that to you. Who knows even if you do have fibro you may be able to manage it and make all your dreams come true. I will never give up hope that they will get to the bottom of fibro and come out with better meds for us or even a cure.

 

Read, ask questions and we will be here for you.

 

luv and hugs

Marlee

 

 

Gosh Singing,
I generally go against the grain here and I'm going to do that today, too. Your doc said to start thinking about plan B, not totally give up singing. I personally know two singers (amateur, choir) who have had to stop singing because the fibro got into their throat singing muscles. They lost their range and it became painful to sing. This could happen to you so an alternative plan would be a good thing. You will need to support yourself and if you can't sing you are in trouble. Perhaps you could teach? Not the same, but at least you would be using your talent to support yourself.

All of your possible disorders require a lot of rest and recovery time in your daily life. This may cause a hindrance in pursuing a career. Please think long and hard about what your doctor has said. She didnt' just "throw this out there" in passing. She is looking out for you and your future and trying to be a partner in your health care. I'm sure she didn't say this lightly and wants you to start looking at alternatives for your life. I'll remember you in my prayers. You have some difficult decisions to make.

Hi Singing,

I am just finishing my master's degree in psychology.  Considering the extensive amount of work involved in achieving an advanced degree, I would be devastated if someone told me that I could no longer pursue my dream and needed to think of something else.  That said, I know the work involved in the master's program has made my fibro worse (for now).  I don't know about other programs - maybe I am at a sadistic school!  I am on 4 research teams, working on 6 or 7 research projects plus my thesis, teaching and taking classes.  etc.  Maybe your symptoms are worse due to the work load, too.

I am taking a break now between master's and PhD and am hopeful that will help the symptoms lessen and become more managable.  Maybe now that you are finished with your degree, the extra time you have can be used to rest and recouperate.   And while you are thinking about plan B, maybe that means you can modify the way you approach your singing career - not give it up completely. 

Good luck,

Sue

Hi Singing..
I'm with everyone else.. do what YOU want to do!! If you can keep singing DO IT!! I gave up my job for about 6 months and now I'm ready to go back to work. I can't wait. I'm giving it another try and I'll see how I do. But the last thing I want to do.. or I want anyone else to do is give up.
You'll have to learn to control your fibro, that's what I'm working on right now. One of our fibro family members has a tag line that says, I have fibro but it doesn't HAVE me. Well, that's a great attitude and that's something we have to do.. have a good and positive attitude and this rotten syndrome will not get the best of us.
I also wanted to welcome you to the forum. As you have already witnessed this is an awesome group of folks that really care.
Take care and keep up the fah-lah-lahs!!!

Hello Singing,

If your Fibro diagnosis is accurate (and it may be...it's a crazy disorder w/ a laundry list of symptoms), it is important to understand that this disorder affects each person who has it differently. 

When I was first diagnosed, I was petrified that I would have to throw in the towel and spend the rest of my days on the couch.  But, it never happened.  I still work full time, take care of my two children, joke with my husband, grocery shop, cook, read, etc.  Sometimes I have to do these things through a hell of a lot of pain and many times the fatigue becomes almost unbearable.  But, I make the decision every day to stay engaged in life and continue to do the things that matter to me.  You can too.

It is important to have a doctor who understands, but there needs to be a healthy balance between giving you the empathy and understanding that you need and encouraging you to find treatment that works...and that helps you continue to do the things that you enjoy. 

I found that my struggle with Fibromyalgia made me discover just how strong I really am.  You will find your inner strength too. 

Keep singing!!

Hi Everyone!

Thank you so much for all of your responses. I agree with all of you, and I haven't given up my dream to sing. I guess it was just a little devastating to hear the doctor say something like that to me. In the back of my mind I had been always thinking of a plan B, but I guess it was more of a reality check when the doctor herself said, "This might be a good time for you to think of a plan B for a career choice".

Anyway, I just want to thank you all so very much for taking the time to read my post, and for all of the support and advice. You have all been really great to me. I just recently went for a blood test which will determine if there are some other things going on, but I will keep you all updated.

Thanks again!

Hey bigsanfer,

First of all, it's never too late to reply to a post, and I was really happy to hear from you. I'm sorry to hear that you were diagnosed with Lupus and Raynaud's. I can't even imagine what that must be like, and especially at such a young age. I'm really happy that you didn't give up on your dream and hearing your story only inspires me to keep pushing harder onto mine.

My titer was low, it was 1:80, but the rheumatologist was suspecting there might be one of the three autoimmune diseases: Lupus, Raynaud's, and/or Sjorgen's along with Secondary Fibromyalgia. She recommended that I have a special blood test to rule these out, and I am anxiously awaiting the results. Either way, I will keep everyone updated with the news.

However, I really do appreciate the support, and it was great hearing your stories. Thanks again, you made my day.

Hi Singing and Welcome-

Lots of great advice given already, but wanted to welcome you here to the site and hope you get a diagnosis soon. I would not give up your dream unless it really starts to become a problem.

Nice to meet you!

Jill