Voice loss with breathing difficulties - Fibromyalgia Acti...

Fibromyalgia Action UK
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Voice loss with breathing difficulties

Roselil
Roselil

I am just wondering if anyone with our chronic illnesses are experiencing these problems. I have always had bouts of voice loss, but with rest, mostly voice has recovered but very weak, but now am under a complete relapse and I am struggling so much each day, and choking also a lot in swallowing. It hurts to swallow and it clicks. I saw a specialist about 25 years ago, and all he said was that my muscles were too weak to operate my vocal chords. No help, and no suggestions! I was diagnosed with M.E and Fibromylgia and IBS, years ago, but I am seriously wondering now if I may have Myasthenia Gravis and been wrongly diagnosed. I have continuous eye troubles too and have been disabled since about 1986, after 3 years confined to bed. Can anyone help or make suggestions. I feel short of breath almost all the time, but I know that oxygen would not help, as my weak muscles could not cope with it, or so I was told by a Dr. years ago. sincerely, in great need, Roselil.

13 Replies
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Some people get Sjorgrens or Sicca syndrome with Fibro- dry eyes, no nasal secretions, no ear wax,dry throat causing coughing fits, dry cracked tongue with fissures- there is a blood test to diagnose this

Hazel_Angelstar
Hazel_AngelstarAdministrator

I get voice loss due to fibro especially when I'm heading into a flare, and also shortness of breath due to costochondritis

You need to speak to your gp if you feel it may be something else.

For my throat /voice I take hot lemonade with honey and lemon juice added.

Thank you, Hazel, for kindly responding. That is the trouble, I cannot SPEAK to my GP. and have to type everything down. They do not much like that, either! That is interesting that you get voice loss due to Fibro, which I also have. I first noticed loss of power in my voice years ago, back in the 1960's when I was a Manager in a company and had to take meetings and I just could not throw my voice enough! Then long periods over many years since then. Now it is non-existent, and a struggle to breath all the time, and I cough and choke easily, even on drinking. At my age now, and in my great weakness, I just do not want to be referred to hospital, for I know I could not cope with it. Much appreciate your reply. Thanks very much. sincerely, Roselil

Hazel_Angelstar
Hazel_AngelstarAdministrator
in reply to Roselil

Sorry I've misunderstood.... I thought it was just short term voice loss - I didn't realise it was ongoing. Thankfully when mine happens it only lasts a few days at a time.

Do you have someone who could go with you to doctor and speak on your behalf. You could type up a note of what you want to say for them to communicate for you.

Must be really frustrating having something like this going on long term... I'm bad enough with a few days xxxx

sorry, maybe I did not make it plain enough. Yes, I have my dear husband, who is my carer, but he is weak now on a drug for epilepsy, and he does not speak up very well. In the past, I have had some voice return, albeit very weak, after much rest, but not this time, so I am in distress. Also got my daughter visiting for a short time, and just cannot really speak to her. But I strain, which makes everything much worse. In my case, I do not think it is costochondritis, for the breathlessness, as a Dr. years ago said that there is nothing wrong with my lungs, but my weak muscles which cannot operate my vocal chords. Still pressing on. So many of us have got so much to cope with. Thank you for kindly responding. Roselil

Hidden
Hidden

Hi

I had 18 months of speech therapy after a couple of years of little or no voice - i was referred by my ENT consultant for speech therapy - being a busy ward clerk I needed my voice at work all the time, my voice has been like yours for years now.

I was diagnosed with fibromyalgia in 2014.

I have had raynaurds phenomenon since 1976, IBS since 1978, coeliac disease diagnosed 2001, and many other symptoms included in the Fibromyalgia umbrella - after bilateral carpal tunnel surgery my consultant referred me to the pain clinic (carpal tunnel also comes under fibro as does croaky voice!!)

I was asked hundreds of questions by my Pain Consultant and I virtually answered YES to every question asked and then told that I have Fibromyalgia.

I am also hypersensitive to scents, cooking smells, light, touch, noise and have social anxiety and PTSD - following two serious RTA's 3 months apart!

My speech therapist stopped the weekly therapy and said she had given me all the help she could!

When is been diagnosed with Fibromyalgia and found that a croaky/very little voice was part of Fibromyalgia I wrote to her and explained that it was a symptom of Fibromyalgia!!

It might be worth being referred to a rheumatologist or pain consultant and an ear, nose and throat specialist to see if they can do any thing to help you.

I had to take early retirement on medical grounds and not having to use my voice on 12 hour shifts x 3 a week has helped no end.

I hope this helps you get further help.

Thank you, dear, Smartsnapper, for your helpful reply. I saw a specialist about 25 years ago, and he said that my muscles were far too weak to operate my vocal chords, so I do not think it would do much good to see a speech-therapist. I am also deaf with tinnitus, so that makes life harder still to cope with. I last worked part-time in 1982/3, being unable then to climb stairs or speak on the phone, and have been disabled since having to spend 3 years confined to bed between 1986-1989. My husband is also my carer, but we have to spend most of our time in separate rooms, so that I do not attempt to strain to speak. It is hard to cope, but as a Christian, I am still able to work in short bursts on the computer which is a lifeline to have some fellowship with others around the world. Like you, I am allergic to perfumes, and many chemicals, and very similar to what you have stated. I was diagnosed with M.E. after my Dr. had been to a seminar on M.E. years ago and later with Fibromyalgia also, with a few extras added over the years. I also saw a specialist in 1980 and he prescribed a beta-blocker, which I took for 7 years, resulted in the loss of the use of my legs. Discovered that it is the worst drug anyone can take with M.E. in the book Living with M.E. by Dr. Charles Shepherd. I also suffer with IBS so we have much in common. You have far too much to cope with, so sorry. I had awful trouble at one time with my hands, but saw a specialist who said it was not carpel tunnel at all, but due to fibromyalgia. I wore hand supports for typing, and gradually, they improved. Very interesting being able to share. take care. sincerely, Roselil

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in reply to Roselil

Thanks for you're prompt reply

I feel like saying snap, snap, snap a lot of similarities!

I had to wear wrist splints at work - the hell I went through on the ward because of supposed " infection control" ingot the green light from infection control and occupational health " and still got questioned about it ......I gave then two options I wear the splints to work or go home but I couldn't work without them! The odd thing was I started with carpal tunnel 30 + years ago at Hornsea Potteries and it hadn't bothered me again till 2012!

My husband is my carer he has heart problems and retired last year - my youngest daughter has fibro and is waiting an MRI my eldest daughter and I both have ME - my daughter started with it at 14 and also has an autoimmune disease too.

Can you get referred for a nerve conduction test to check out you're hands properly?

Your GP by not seeing you as you need to write everything down is discriminating against you - I was discriminated against often at work directly and indirectly.

Hope this is of some help.

Good luck in trying to get more help.

Thank you dear for responding. No, I would not choose to have a nerve conduction test. My hands are doing better now, very weak, of course, but coping. I have found that the least I get involved with the medical people, the better. I take herbal remedies mostly. We have got some good husbands then as our carers. My husband is younger but on a drug for his epilepsy. Very sorry indeed to hear that your youngest daughter has Fibro and your other daughter also has ME too. Oh dear. take care. Goodnight. it has just gone midnight.

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Good night too - I'll be wide awake till approx 7.00am my body clock has gone back to when I worked night shifts!

Hi Roselil, I found this all very interesting reading through. I know you want to have as little as possible to do with the medical professionals but 25 years is a long time without a review of the muscle weakness in your throat. There have been so many medical advances over the years that I would be very surprised if nothing could be done in this day and age for you. Good luck 🤞 💐

Roselil
Roselil
in reply to Lemony990

Bless you, dear for your kind thoughts. If I told you that the muscle weakness and pain is not just in the throat and chest, but throughout my whole body, you might understand a little more that I just do not have the strength to go through anymore medical procedures. I am a Christian, so at 85 years old now, I am waiting to go Home with the Lord, when I shall, by His grace, be thoroughly healed in every respect. Thank you so much for your concern though. Love from Roselil

Have you ever had blood tests to check for Thyroid Antibodies? You have many symptoms of Hypothyroidism, but could be symptoms of your other conditions?

Also, could you have Laryngopharyngeal Reflux/ Silent Reflux? I have. The rising stomach acid can harm the voice, cause voice loss, pain when speaking, singing and hoarseness of voice.

The Thyroid tests to ask for if they haven't been done are:

Thyroid antibodies: TPO and TgAb ; FreeT3 and Free T4; TT4; TSH.

Aldo dome nutrients levels : Vitamin D, Calcium, B12, Folate and Ferritin.

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