anyone else got severe long term voice loss with your fm?
there is very little on it in forums and online, and needless to say, mainstream doctors are clueless about it let alone being able to help.
my voice loss was i think initially viral, but anyway it has not really recovered after 5 months.
e.n.t ruled out vocal cord damage and thyroid causes. and said he didn't know much about c.f.s - i shouldn't be surprised.
so it is very depressing and isolating. i can weakly say about two sentences then voice disappears. extremely distressing. and frustrating. i did not know one could get so sick and disabled.
so just relaying my experience. even though it's not definite in my case, I'm just posting a more current story, we are too tired to post or sign up to new forums, some of us suicide, some recover somehow.
the specialist just referred me to a speech therapist (or pathologist - can't remember). i can't see how it's going to help.
it seemed to improve a few weeks ago but maybe because that's just because i was resting my voice.
add your story! it seems to be rare to lose your voice for more than 2 weeks in conventional conditions. so it is rare but not unheard of. people just wouldn't know where to start looking/ searching.
frustrated with doctors.
let down by god.
i have hope but it seems to make me miserable. maybe hope without expectation is the way to go.
I'm getting a voice amplifier but i think it will only help a bit.
life is hell.
Listen, have you ever heard of the Buteyco breathing technique?
It might be worth looking into it for your loss of voice and other issues.
It is wonderful for so many things. I have studied this online and I'm planning to take the instructor's course in 2014, as I want to teach this to my my little nephew back in Greece who has asthma, a good friend who has bronchitis and asthma and anyone else who can benefit from it.
Some of the conditions it can help alleviate symptoms and bring improvement:
1. Headaches; Migraines
3. Fainting (sometimes with epileptic spasms)
4. Insomnia, drowsiness and other sleep difficulties
6. Memory loss
7. Rapid fatigue
9. Short temper
10. Poor concentration
11. Unsubstantiated fear
13. Hearing loss
14. Paresthesia (including total loss of all forms of sensitivity, more frequent than extremities)
15. Spasm during sleeping, tremor and tick
16. Vision loss
17. Age related far-sightedness
18.Flashing in front of your eyes,
19. Increase in the intraocular pressure
20. Pain during the motion of eyes upward and to sides, glaucoma, cataract, squinting
21. Parkinson Disease (initial forms)
23. Schizophrenia (initial stage)
1. Sweating, body temperature irregularity, chills
2. Endocrine System:
a. Hyperthyroidism, diabetes mellitus, obesity, exhaustion
b. Menopause, PMS, menstrual cycle disruption, morning sickness
c. Breast lumps
d. Impotence, loss of libido
e. Infertility, miscarriage
f. Gynaecological polyps
1. Spasm of larynx and bronchial tubes (bronchial asthma)
2. Loss of voice
3. Allergies, food allergy, medicinal allergy, pharyngitis, laryngitis,
4. Multiple chemical sensitivities
5. Asthmatic bronchitis, obstructive bronchitis, exercise induced shortness of breath, mouth breathing, frequent deep breathing, chest and shoulder breathing.
6. Absence of pause after exhalation during resting
7. Breathing arrhythmia or hunger for air
8. Unable to take a deep breath
9. Chest constriction
10. Discomfort related to stuffy air
11. Difficult to nose breathe at rest or during light physical activity
12. Nasal congestion, rhinitis
13. Predisposition to cold and chills, including: frequent bronchitis, influenza, etc.
14. Cough (dry or with phlegm,) dryness in the mouth and sinuses,
15. Sinusitis, adenoids (adenoids), polyps in the trachea, the bronchi, acute emphysema of lungs, pneumosclerosis, interstitial pneumonia, chronic pneumonia, bronchiectasis and spontaneous pneumothorax,
16. Loss of sense of smell, chest pains
17. Incorrect posture, deformation of chest
18. Hyperinflation of the chest
2. Cardiac palpitations, spasming of blood vessel in the extremities, brain, heart, kidneys; chills, extremities are sensitive to cold, chest pain, stenocardia, Reynauld Syndrome
3. Varicose veins, hemorrhoids
4. Marbling of skin, fragile blood vessels, gingivitis, frequent nose bleeds
5. Pulsation in ears
6. Myocardial infarction, stroke, blood thickening, thrombosis, decrease of the alkaline reserves of blood, electrolyte balance, change of PH in blood, decrease of partial oxygen pressure in arterial blood in initial stage of disease and opposite changes on final stages of disease, etc.
1. Increase or decrease in appetite, cravings, salivation or dryness in the mouth
2. Distortion or loss of taste, irritated bowel syndrome, stomach pain
3. Constipation, diarrhea, dyskinesia of bile tracts, heartburn, reflux, nausea, vomiting,flatulence, some forms of gastritis and ulcer, disease of stomach and of duodenum, etc.
KIDNEYS & URINARY SYSTEM
1. Protein, oxalates, urates in the urine
2. Frequent urination, especially at night
3. Bed wetting, cystitis, diuretic symptoms
1. Muscular weakness, physical fatigue
2. Aches in muscles, more frequent in legs (calf muscles), twitching of groups of muscles, strengthening or weakening of muscles tone, atrophy of muscles, pain, restless leg
3. Contraction of wrist tendons
SKIN & MUCOSAS
1. Dryness of the skin, rashes, skin itch, hives, eczema, psoriasis, tendency toward fungal diseases, pale gray skin, adolescent acne, pastiness of face,
1. Fatty tumours
2. Salt deposits in joints, skin spots, tissue hypoxia, concealed edemas.
Some people lose their voice because of anxiety. Can't remember what it's called, though... sorry. Had a friend who would lose her voice on and off because of anxiety attacks. The doctors gave her breathing exercises and anti-anxiety meds to help. -
yes the anxiety isn't helping - but i have been far more anxious in the past and never this problem.
on other boards it seems to be a rare but terribly real aspect of the collateral damage of cfs.
i notice that getting a strong breeze on my face/ throat can make it worse.
i got a voice amplifier and can use swype on my phablet phone,
but i can only have a few sentences a day - in fact barely anything today - before it completely disappears and becomes uncomfortable.
seems to get worse during the day.
it seemed to be improving over the weeks but just really bad this week after i spoke too much a week ago - 5 minutes quiet talking - it is an accursed disease and almost unlivable.
it would actually be okay if i lived by myself - but i am in care and it helps to be able to talk for the social aspect of it.
cfs is of the devil
I am so sorry that you are suffering in this way. Telling you to try to relax is redundant to say the least. There are muscle relaxers that might possibly help. Ask your doctor about them: dicyclomine is one of them. An anti-spasmodic might be useful. - Straining your voice is really not helpful... Are you taking Magnesium supplements? Magnesium deficiency causes muscle spasms and a feeling of a "ball" caught in the throat. It might be helpful. I believe Magnesium Glyconate is supposed to be the best.
Hi.... I wonder how you are now, 18 months on from your post? I have Fibromyalgia, am a singing teacher and psychotherapist. I believe it has a lot to do with the soft tissue in the larynx. As a singer/teacher, I use my singing and speaking voice a lot. We know how the rest of our soft tissues in the body respond but we forget the larynx has a lot also. I find when I am in a flare, my voice is one of the first things to go.
Rest (sleep) is the only thing which really helps. I am just starting to try Forever Living productsas I feel they may be of some benefit.
I would love to know how you are now if you wouldn't mind sharing.
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