CFS and loss of voice?

Discussion in 'Fibromyalgia Main Forum' started by Pakuranga, Aug 21, 2003.

  1. Pakuranga

    Pakuranga New Member

    Hi I am new to this message board.
    I was wondering if anyone else out there suffered from a loss of voice when they were unwell with CFS? I have been unwell for over a year and had to give up my teaching job. I had a bout of flu, just like many of the kiddies in my class and many of them had laryngitis. My voice went too. In the last twelve months (slightly more) my voice returns briefly for a couple of days, then goes again. In the morning when I wake up, for the first hour or so it's not too bad, but then it deteriorates until by the evening it is a struggle to make audible sounds. I have been to four ENT specialists who have even videoed what my vocal chords aren't doing. But my last encounter with an ENT specialist at our local hospital was the most outrageous. He questioned why I should need a voice, after all I am married? He was from a different culture and was hardly sensitive to my cultural needs. Finding it so difficult to make sounds, I didn't bother explaining why I needed a voice. He also suggested that he and his colleagues could experiment with my vocal chords and inject something into them to plump them up so they could meet when I tried to speak. I declined the "experiment!"
    If my voice does perform properly in the morning when I get up, I can see no reason to allow anyone to "experiment" on my vocals.
    An Endocrinologist who originally diagnosed me with a "variant of chronic fatigue syndrome" nine months ago said he'd never seen voice loss in a CFS patient before. The same message has come from all the other ENT specialists and the 2 doctors I have seen in the last year.
    Has anyone else with CFS got this problem? If you have I would really love to hear from you or should I be looking for another diagnosis? I have searched the web for reasons why people lose their voices and treatment, but my voice doesn't quite fit anything I can find.
    The other problem I have had with the medical and alternative medicines people, is that it seems to be a bit beyond them and they are very happy to refer me onto someone else, because what ever it is that's causing my problem, it's not their area of expertise. As a result, my GP has now become my "Expert" but he openly tells me that he hasn't got any other patients with a long-term illness like mine and he too doesn’t know what to do with me. At least he’s honest. I feel quite disillusioned with the medical fraternity. Every week the media reports wonderful things that are happening in the development of medicine, but they sure aren't happening in my tiny corner of the world.
    I have been ill like this before but for much shorter periods of time. I lost my voice for about 10 weeks in 1993 and for about 14 weeks in 2000, but both times I was not as fatigued as I have been this time. Were they perhaps a warning that I didn’t heed?
    Until now, I have always been a very energetic person. Now it’s a struggle to stay interested in anything and with not having a voice, it has brought my social interaction with the outside world to zero. My colleagues at work can’t understand why I don’t visit them in their staffroom, which is noisier than any classroom I’ve ever worked in. They all talk at once and get louder and louder when they find that they can’t make themselves heard.
    When you can’t participate it’s amazing what you notice. Visiting them was totally exhausting so I stopped trying many months ago. And because none of them can relate to what it is like to be ill for such a long time they seem to think it’s in my head, although none of them have been brave enough to say that to my face. Quite frankly I’m ashamed to admit that I once fitted in quite nicely.
    I have mourned the loss of my career, the loss of colleagues who I had thought were my friends and the loss of a fairly interesting and stimulating life. What is in store for me? I had a brother who died of Cancer earlier this year and I find myself quietly envying him – at least his terrible illness came to an end, but I must be careful not to say that to any well person.
    If there is anyone out there who is having a similar problem with their voice, please get in touch with me. I would really like to hear your story and perhaps derive some ideas from your experience or make some suggestions to my own GP of things we could look at.
    Desperate Pakuranga
  2. PJB

    PJB New Member

    Welcome to this board. Sorry to hear of your problems. I have similar problems when I push myself to hard. When I'm extra tired (or stressed) my voice becomes very thin and horse, not more than a wisper. With me it only lasts a couple of days as long as I get rested and stop pushing myself. Sorry I don't have any great words of wisdom other than to rest and drink warm fluids. FMS/CFS effects muscles and fiberous tissues anywhere in the body so I just add this to the ever growing list of synptoms that I have.
    [This Message was Edited on 08/22/2003]
  3. katielef

    katielef New Member

    I have bouts of laryngitis and also my voice can be weak by the afternoon. I have fibromyalgia. What has helped me is being treated for allergies and being prescribed sleeping medication. It still comes and goes when I'm overtired or weak, but not quite as bad.
  4. Spoclar

    Spoclar New Member

    Pakuranga, I am relatively new to these boards but I have to say that I've had some weird symptoms and then a dx of UCTD in 1999 and it wasn't until a couple days ago when I logged on here that I FINALLY am feeling that there are actually other people out there - and a lot of them - who have a clue as to what I've been experiencing.

    I really feel for you - I love to sing, and the voice problem I have experienced on and off over the past year has really been hard. I want to try out for solos in the group I belong to, but I'm afraid "What if I get the part and then the night of the performance I can't do it?" Allergic asthma has turned out to be a big part of my problem, and Allegra, Advair and Nasonex has been the combination that has been working for me, but still I wonder if it's going to get worse or if those drugs will loose their effectiveness and I'll have to take more someday, or if there is an element of my voice difficulty that is not allergy but some other issue.

    I am skipping the first of our 3 concerts this year, since the Christmas concert rehearsals are the most grueling for me (my full-time job in a nursing home - I'm a music therapist/activity director - makes December exhaustion really tough), trying to drink adequate fluids, not push it when things start feeling sore/raspy, avoiding long conversations with staff at work, etc.

    The pain in my hands has made guitar and piano playing difficult - I can get through an MT session or accompany a service at my church, but doing more than one in a day, doing a series of days, or practicing more than 15-30 minutes at a time is out of the question. If I can't play, then my voice will be my only musical expression - feeling like it is failing me is very scary.

    Wish I could help more - just know that there are a LOT of people reading these posts who offer great advice and support - I wish you all the best in finding the answers you need!!
    [This Message was Edited on 08/22/2003]
  5. Debgene56

    Debgene56 New Member

    I am sorry that you have been feeling badly. I need to share something with you that you might not want to hear. My mom had a bad cold that went away, but her hoarseness from the cold lingered on. She was exceptionally healthly except for this. She asked for a chest x-ray after a month or so. It showed a 3 inch tumor in her left lung. It was pressing on her vocal cord and that is why she lost her voice. The vocal cords go down in your chest and come back up. She could not have surgery. She has been doing chemo and the first catscan showed a 50% shrinkage, and the last one showed a 20% shrinkage.

    I don't want to scare you, but please have a chest x-ray done. You just never know, and god forbid, the sooner you find something like this, the better the treatment. My mom has the slow growing kind, and she quit smoking 14 years ago.

    I pray that I have not made you anxious over what I wrote, but please have it checked out as soon as you can.

    I pray that you find some answers to your problem!!

  6. Annette2

    Annette2 New Member

    My suggestion is to see a qualified Speech Therapist!!!! It must be someone with a Master's Degree or Ph.D. education. The right one will be able to diagnose and help you with your speech problems. Most big hospitals have Speech and Hearing Depts. and if the people there can't help you they can probably refer you to someone who can. By the way, where do you live?

  7. Shirl

    Shirl New Member

    Shalom, Shirl
  8. Debgene56

    Debgene56 New Member

  9. Debgene56

    Debgene56 New Member

  10. Vette

    Vette New Member

    Hi !! I totally understand but did not realize others were having this problem also, which is kind of stupid as I believed most of the time it is from me being too tired even when I have done nothing. I don't have a CFS dx. but a FM one, I of course tend to think I have both and my GP says they pretty much go together. Since I don't work anymore and often don't talk to anyone for several hours after my husband leaves for work, I never know how I am going to sound / or not sound until I call my Sister to visit. My Sister has been with me through the whole thing and unlike other Family members (outside my home) knows right away it's me and we just laugh about it and know it will be better after I nap sometimes or some other day even. Mine never goes totally away except for a word here and there, but I get very froggy and often very quite voiced and can't make it louder. I wish that was my biggest problem as my "Brain Fog" is still my major problem and what has robbed me of my independance. My G.P. was going to a conference on FMS/CFS this week and said he would inquire as to anything new for the Fog and let me know if we could try something.
    Good Luck to You.
    P.S. Speech Therapy ain't gonna help ya' none, sips of liquid don't help and neither does clearing your throat as has been suggested to me by my Mom who DOES NOT understand this illness. Just called my Sis, I sound like crap today !
    Hang in there !