New and have rare fibro problem

Discussion in 'Fibromyalgia Main Forum' started by LuvQuilting, Feb 19, 2007.

  1. LuvQuilting

    LuvQuilting New Member

    I'm so frustrated that I can't find any fibro people with this problem. I have full body muscle aches and joint pain, sleeping issues, etc. but the fibro has also affected the muscles surrounding my vocal cords so it's painful to speak. I have been to all the specialists over the last 3 years and had tons of tests. I even had botox injections into those muscles once every 3 months for a year just to be rid of the pain. Those were given by my ENT specialist. I also saw a speech therapist because my voice was so strained. What finally has helped so that I no longer need the injections is Neurontin. I started that last August and it has been a miracle drug for me even though it's not 100% effective in pain relief. Since I'm not working (accept my Ebay store) I can rest my voice during the day but by evening after my kids have come home, it still can get pretty painful. I suck on cough drops and chew gum a lot and I don't have much of a social life. I have applied and been turned down for SS benefits and reapplied which I'm now waiting for but my case is so rare. I used to be into weight lifting so I'm in good shape. I exercise, stretch, do daily meditation to relax those muscles, you name it! Is there anyone else out there with this form of fibro? I have it under control but just want to find someone else!
  2. leubie

    leubie New Member

    hey my name is laura-------im sorry but ive never heard of your vocal probelms--------i hope you can continue to keep it under control. Maybe your ssbenefits will come through this time----------do you have a lawyer? i have read here that it helps if you have a lawyer--------i think you do not have to pay-------if you do not win!!!! ------take care and keep in touch!!!-------------LOVE TO ALL----------LAURA
  3. lookingoutthewindow

    lookingoutthewindow New Member

    Welcome. I have had this, but not that severe. Have you had ANY recent surgeries, allergies or reactions? I am asking because mine was triggered by all the above and it was not always immediate. I have been to an ENT and he helped to figure this out. Something to think about. I hope you get relief soon.
  4. LuvQuilting

    LuvQuilting New Member

    My allergist was the first person I went to because I have a lot of loose phlegm and throat clearing which didn't help. I'm back on allergy shots but it really makes no difference since my allergies are mild. I make a conscious effort not to clear my throat but sometimes I have to when I'm talking. Other than that, no surgeries or anything unusual. My MD thinks it just turned into a chronic pain problem and the cycle needed to be broken which is what the Neurontin did. Now I'm left with throat muscle pain when I simply use them to talk. Very unusual, I know. No, I don't have a lawyer yet but I may consider it if they turn me down again.
  5. LuvQuilting

    LuvQuilting New Member

    I also have difficulty swallowing certain things, usually doughy things and this is common in fibro, especially the feeling of having a lump in the throat. I can tell you that anxiety about it makes it worse so telling yourself that it's not going to close up will help a lot.

    I have had tons of blood work done (including Lyme) by my MD, my neurologist and my rheum. I know it all totalled over $1,000 which insurance paid for. I don't know the companies uesd right off hand but I'm pretty certain that this is just another fibro muscle problem. I've pretty much washed my hands of doctor and specialists.
  6. jole

    jole Member

    Wow! I thought it went along with fibro, since I have had this for the last 3 years. I have told my docs and they have all spaced me off but one. He said it is muscle spasms causing it. Mine causes a very raspy voice, especially when I am in the most pain. My kids can tell immediately by my voice how I am feeling. As you say, it's like a strain. It's hard to talk, takes twice the effort to get the sounds out. It also causes me more fatigue, so when it's like this I don't talk much either.

    I also have trouble swallowing at these times. Meat especially will not go down. It feels like I'm choking, and even taking a drink of water doesn't help. That HURTS!!! I have learned to eat very soft foods these days and to eat very slowly.

    I was also tested for Lyme and it was negative - not that that means anything:) If you find out anything, please let me know!!?

  7. kirschbaum26

    kirschbaum26 New Member

    Dear Luvquilting:

    Sorry to hear of your unusual problem. While I do not have the pain from vocal cords as you describe...I do have lots of issues with my throat. I have what I can only call the YUCKS. I always seem to have some stuff from my lungs that I am trying to get out.

    It is especially bad in the am, and I find that if I take a hot, steamy shower, I can clear most of the yucks out of my lungs and throat. I also get a sore throat, but assumed it was from this irritation all the time. I do not clear my thoat, but sometimes have to cough up something. I have asthma, and find that when my asthma is worse, so is the terrible feeling in my throat.

    Many times I choke on tiny things that I am trying to swallow. I have to take my pills one at a time, even the little ones, otherwise I end up throwing them back up. My throat is dry all the time. I drink lots of water all day and all night...which keeps the yucks moving out of my lungs.

    Not really sure if your pain issue is related to FMS, as I have never heard that one. If you are seeing an ENT doctor, they should be able to tell you what is going on and hopefully find some medication that works for you.

    I am surprised about the neurontin...as my mother takes it for bi-polar disease. I also know a lot of people who are taking it for sciatic pain. Glad to hear that there is something that has helped you.

    How did the botox injections go for you? I ask, because there have been times that I have nearly agreed to have them for muscles that are locked in spasm, and have caused a long list of problems in my life.

    Thanks for sharing, and I hope that someone on this board can help you.

    Ingrid
  8. mujuer

    mujuer New Member

    Have they checked you for a thyroid goiter? When they found out that I had a multi-nodular goiter my thyroid tests were almost normal! I had all of the symptoms of low thyroid but the test kept coming back normal or near normal. My primary dr. suspected something and had me go get an ultra-sound on my thyroid and sure enough, there it was big as day and already had two small nodulars on it. I went to see an endocrinologist and he put me on synthroid immediately to keep that sucker from growing anymore. It is sometimes hard to swallow and he told me that if it gets bigger then it CAN affect my vocal cords and close off everything so I go periodically have it ultrasounded (is that a word-smiles) again.
  9. LuvQuilting

    LuvQuilting New Member

    I have done tons of research on dystonia and my speech therapist (who's husband is my ENT) thought at first that I had a combination of spasmodic dysphonia and muscle tension dysphonia. Oddly enough, my grandmother had a speech problem and we could hardly understand her. The botox injections only helped the pain for one month, I was totally pain free in the throat but talked like minnie mouse and was very short of breath not to mention choking on water since the botox simply holds the vocal cords open so I would choke easily but not on food. Then after a month the pain would slowly creep back in as my voice quality improved. By 3 months I could barely stand the pain and was ready for more. It was a horrible cycle and I'm glad to be done with it. I am their first patient ever with fibro and a voice disorder and in the end they agreed that it must be from the fibro although none of my docs knows for sure as this disease is so hard to understand.

    jole - I would be interested in talking with you more about this since you're about the only one I've come across with this. There's no doubt in my mind at this point that it's just one more group of muscles affected by fibro. Is there someway we can email one another?
  10. LuvQuilting

    LuvQuilting New Member

    Yes, I have dry eyes and dry mouth, was tested twice for Sjogrens AND had the lip biopsy done, all negative! I'm telling you I've researched and done it all! My tests last year ran into the thousands of dollars, paid by insurance. Botox alone was about $1,000 each time!
  11. LuvQuilting

    LuvQuilting New Member

    I have never had an ultrasound of my thyroid but have had numerous blood tests for it and physical exams of my thyroid. Wouldn't they be able to feel that with their hands? I'm not sure that would cause the muscles around my vocal cords to hurt though??
  12. Shalala

    Shalala New Member

    I have pain allllll over ... tip of toes to top of head (yes my scalp even is tender) and at times it feels like something is tightly wrapped around my neck. That comes and goes. I have never had a problem with the vocal chords though. I do wake myself up sometimes with a muscle jerk gasp thing. Don't know if that is related? or it may be sleep apnea? We all have different thresholds of pain too. Good luck to you.
  13. LuvQuilting

    LuvQuilting New Member

    I have felt the tightness at times, too, but for me it's mainly the muscles at the back at my throat. I can consciously relax them if I think about it but then as soon as I speak and use them, they get sore.
  14. mujuer

    mujuer New Member

    My primary dr. can't feel it at all and my endo says he can barely feel it. It can make your muscles hurt around the vocal cords because it is pushing on them. If you can, look up some info on the web about goiters but I wouldn't rule it out yet and it could really get to be a bigger problem. I just know that nobody found mine and look how far I had progressed even though I told several drs. over the years about my symptoms. Just don't want anyone else to go thru it or I wouldn't push the point. Hugs
  15. LuvQuilting

    LuvQuilting New Member

    So, I looked it up and the one major symptom is swelling around the thyroid. You must not have had that? And how long did you have symptoms before they found it since I've had this now for 3 years and the difficulty in swallowing certain things really isn't that bad for me nor has it worsened over the years. Can it remain "stagnate" so to speak? I just assumed that being to so many doctors and having so many tests that everything would have been ruled out by now and I have a really good MD. In fact, he got voted "best doctor" in the city by other docs for several years and we live in a big city! Thanks!
  16. tabby123

    tabby123 New Member

    I just joined this board. I was dx w/ fibro last year, among many other things. My entire body, from head to toe has something wrong and something baffling to the medical profession. I have trouble swallowing and neck swelling. My neck is always swollen. They have went back and forth saying it was my thyroid, but never have done anything about it. Crazy drs. I have problems swallowing my spit sometimes. It is really scary! I can relate to alot of issues on this site. I just hate that we are judged on the way we look on the outside. If others could only experience what we do in one day, they could not take it!! People just don't understand. I sympathize with anyone who has any type of medical problem. Everyone is different. Anyway, that's my take. I had to vent a little too. Hugs!!
  17. LuvQuilting

    LuvQuilting New Member

    Sounds like you're the one who needs to be tested for the goiter!! If I were you I would find a new doctor and just ask about it. The only things I have a problem swallowing are doughy things, meat or hot drinks. I DO know that being scared by it makes it worse. My axiety makes my chest muscles tighten sometimes and then I can't get a full breath. As a kid it scared me to death, now I know what it is and just knowing that helps me to relax and it goes away. The mind is a very powerful thing!
  18. mujuer

    mujuer New Member

    Thank you for looking into the thyroid issue. We have to our own sleuth's these day just to get correct diagnosis. I did not have any swelling at all. The dr. says it is growing back and down and that is why I didn't see anything. It was such a slow occurance about swallowing differently that I guess I didn't notice. I had all of the signs though of a low thyroid function. I had an excellent dr. at the time who had an uncanny way of knowing precisely what to look for. I had alot of things wrong with me at the time and she investigated them all and found alot of things that other topnotch dr.s missed. We moved away and I really miss having her to treat me. Ask for an ultrasound just in case. I don't think they will deny you.
  19. lilaclover30

    lilaclover30 New Member

    I get hoarse when I talk too long or sing in choir or rehearsal. i can't eat a big piece of meat and have trouble swallowing my potassium tablet which is huge.

    I do have trouble with my speech - hubby has trouble understanding me. I don't know what is the matter - Ii try so hard to be heard and speak right but sometimes it jiust doesn't souind right. I am hard of hearing and wear a hearing aid in my best ear. I am always asking others to repeat when in a crowd.

    I blame the voice trouble onto fibro - everything else seems to be caused by it!!!!(also can't type well!!!)

    Gentle Hugs

    Joan
  20. desertlass

    desertlass New Member

    I have a scratchy sore throat feeling-- and I feel like I have to suck on cough drops all the time. Okay, I know absolutely nothing about any of this, I'm just throwing this out there for what it's worth.

    Could there possibly be a structural issue, like a trigger point, in the mix in some way? I don't think trigger points can be relieved by stretching, etc., so it wouldn't be your fault if they were deep inside a muscle somewhere that was causing tension for all the surrounding connective tissue, etc.

    Again, I'm only suggesting this because I have to see an osteopath who does a lot of bodywork because I have so many structural issues. I know that sometimes people think trigger points can cause everything, and I'm not one of them, but it just popped into my head.

    Thank you for sharing what this difficult symptom is like, so that others can benefit from your story.

    Lisette