Hoarse raspy voice- how and why?

Does anyone know what the cause of voice problems in ME/CFS is?

A long shot, I know. I have a lot of issues with my voice, many people have asked if I have MS as I sound like someone they know who does. Sometimes I have to talk through my nose to force some sound otherwise I’m just whispering almost inaudibly. Sometimes my throat hurts, sometimes not. Sometimes I’m fine. Often, it goes after exertion such as travelling to an appointment.

I found a great write up byME Foggy Dog https://www.mefoggydog.org/2022/07/28/speech-and-language-therapy-for-m-e-voice-issues/


I’ve struggled with constant voice loss since just after I got diagnosed. It got increasingly worse until it disappeared completely for a few months during 2020. I was referred to ENT, where I was advised that 5 years earlier after they assessed me, they had recommended my GP refer me for Speech Therapy! Obviously that didn’t happen and things deteriorated.

I’ve seen a few NHS ENT’s (there were issues with service capacity and I was passed around trusts for a few years) who have all said there’s no visible problem with my vocal cords, and I was diagnosed with “functional dysphonia”. I’m due to see a new ENT again soon in the hope that this one will have a speech therapy department and will refer me to it.

The last ENT was very insistent it was psychological, and I’m worried this one will also want me to see a shrink or CBT rather than a speech therapist, so I want to be prepared with medical facts. I know speech volume and ability problems are quite common in ME, but the ENT won’t.

 

I have no idea I’m afraid other than to say ‘me too’. Not as bad as you’ve had it but my voice often goes quiet or hoarse/raspy as you describe when I am bad. And returns to ‘normal’ when I’m less bad. As with many symptoms I just put it in the large box of ‘one of those things’.

I’d be interested if anyone has any better insight though!

 

I think if speech problems are linked to ME/CFS their origins will be as unknown as everything else in ME/CFS. There won't be any helpful medical facts!

The priority has to be to exclude some other cause.

Whether or not speech therapy would be helpful for problems associated with ME/CFS I don't know but if it is like other therapy manoeuvres I suspect there is little evidence it would be of use. Maybe there are tricks to help getting a smooth noise out.

 

My voice becomes more hoarse the more I have done, so it tends to be a reliable sign that I need to rest.

 

I get hoarse if I talk a lot, but I don't think it's much to do with my voice. It's more likely to be the loss of fine motor control and co-ordination I develop due to fatiguability and/or PEM.

I've the same problem with breath pressure on my whistle. Different notes need different pressures, and even though it's completely automatic when I'm rested, I can't do it tired. I rarely use too little air, I'm usually blowing it horribly sharp by using too much.

I'm not sure that I 'over-blow' my voice in the same way, I haven't the cognitive bandwidth to work it out if I need to carry on a conversation at the same time. But if I do (and I suspect that's the case), it's not surprising my voice goes.

 

It’s so annoying that we don’t even know if it’s the fatiguability of the muscles involved, or an autonomic thing, or a mucus/lack thereof thing.
It’s observable, it’s easy to run a battery of tests to identify or exclude factors, but nobody has, have they? Do we know what causes it in MS? I’ve had a look and it all seems to be neurological/brain problems, and maybe a weak diaphragm

 

Nope! Same way they haven't looked at why it's practically impossible at times to walk through a doorway without crashing into the frame. But I think if we ever get our movement study, things like that will be revealing.

I doubt the phenomenon itself is entirely unique to ME. It's probably a version of what normally happens to people when they're exhausted, or drunk, or in shock. But it would be great to be alerted when it starts, before too much harm has been done; even better if there are subtle patterns that might actually identify ME/CFS.

 

I get a croaky, weak voice a lot and have done since I first got ill. I find it very frustrating and I'm so jealous of people who have a lovely smooth effortless voice that doesn't tire when talking! I never would have thought twice about my voice before ME. I don't remember it ever feeling hoarse or raspy when I was tired before (unless I had a sore throat) but maybe it did.

 

Apparently women have increased risk of voice loss from around age 40 anyway? Which would explain why absolutely nobody has ever looked into it.

 

Is it possible that you have respiratory reflux (also known as Silent reflux)? It can cause hoarseness that comes and goes.

 

None of the ENTs who have shoved a camera up my nose have seen any problems. My hoarseness comes and goes during the course of a day and then deteriorates when I exert myself, I don’t really have any of the symptoms of silent reflux so I don’t think it’s that.

 

I have a similar issue with longstanding hoarseness, periods of throat clearing, and a 'tired' voice which is worse when I actually am tired. I had a throat investigation many years ago which found a muscle spasm. The ENT surgeon stretched it and the relief was wonderful. It lasted a day then the spasm and variable sore throat etc. returned.

 

I can't talk for long, but I ascribe that to lack of use. I live alone, in the woods, and probably go for several days without saying anything.

True. If ME is messing up neural functions, in different ways in different individuals, it'll be difficult to verify. It probably only takes a minor shift in some metabolic pathway in a few cells to produce significant physical effects. Imagine a computer chip where just one transistor fails to switch properly once in a hundred times. The effects depend on which transistor at what time. Does it make one pixel on your screen slightly the wrong brightness, or does a billion dollar financial transaction get screwed up majorly?

I have double-vision, and my best guess is that a few brain cells involved in eye positioning are malfunctioning a bit. I expect that just a few brain cells can cause raspy voice too. I doubt there's a simple way to clinically test that.

 

Living anywhere with ME and struggling to speak or with vision is not ideal. But living alone in the woods sounds delightful. I hope the fresh air and surroundings helps a little.

 

I’m a Speech & Language Therapist, retired due to ME/CFS. I have experience with voice disorders. We used to do joint clinics with ENT, where the ENT doctor would use either a rigid scope (straight into mouth with a camera on the end that looks down) or a flexible scope (up nose and down back of throat), and we would then watch the larynx on the screen as the person said "ah". You get closer to the vocal cords with the flexible scope but the rigid scope gives a better picture. We would then watch the video back with the patient. We’d agree on treatment and sometimes proceed straight to the first voice therapy appointment (really an assessment).

I remember that the “Voice Impact Profile” which we used in our initial assessments specifically asked whether the patient had post-viral fatigue syndrome. So somebody has recognised this. I believe I wrote to the authors but didn’t hear back.

In the early years when I was still working, hoarse voice was one of the most reliable tells of my worst days. My colleague who specialised in voice would often ask me whether I had a cold on those days. The fact that the hoarse voice would spontaneously resolve a day or two later, without any voice rest or change in the way I was using my voice, suggests to me that there is a process going on that we do not yet understand. My guess would be something to do muscle (the vocal cords are tiny muscles) and/or low-grade local inflammation (part of the sore throat, swollen glands complex).

Now, with severe ME/CFS, I rarely have a hoarse voice, but I’m also very limited in how much I can talk, so it may be that the underlying issue is still there.

What I think could be useful from a Speech & Language Therapist is couple of sessions on general vocal hygiene advice (things like drinking enough water), learning diaphragmatic breathing, neck stretches and how to use your voice gently (“easy onset”). These are relevant regardless of the cause.

For the hoarseness that I experienced, any more voice therapy than that would have been counterproductive, because going to appointments was exhausting and may actually have made me more likely to have a hoarse day as a result. Now, I had an advantage in that I knew all the voice hygiene and muscle tension stuff from my job.

But I have no idea of your particular circumstances and all that could be contributing. More therapy could be helpful if, because of the chronic hoarseness, someone has developed ways of compensating that are actually making the problem worse. This happens a lot, regardless of the cause. If this is the case for you, then I would be careful to only sign up for appointments that you can manage without making your ME/CFS worse. SLTs often schedule weekly appointments, or fortnightly. If you could manage monthly appointments, and one appointment every 3 months, but more frequent appointments would leave you more ill, SAY SO. If your needs can’t be accommodated, find another SLT.

You say in your post that your voice often goes “after exertion such as travelling to an appointment”. This would be a red flag for me, because it could mean that going to a voice therapy appointment will make your voice worse, not better. However, it could also mean that the stress (positive and negative) of an appointment changes the way you use your voice, and you would benefit from learning how to use your voice gently even in stressful situations. If you can talk for hours at home without hoarseness but get hoarse after talking for an hour at an appointment, this could be relevant. My money, however, is on the former rather than the latter.

If by any chance you smoke, stop. It’s a disaster for the mucosa – meaning the nice moist surface of the inside of your nose, mouth, throat, voicebox, and vocal cords. And if you have any signs of reflux, get that seen to. Either of those can cause chronic hoarseness that will not improve with therapy.

It is reasonable for an SLT to talk about stress (positive and negative) increasing muscle tension and reducing how well you’re breathing, and suggesting ways to reduce it. But if they’re getting deep into psychosomatic territory, or suggesting you see a psychiatrist, and you’re clear that your mental health is fine, and you're not comfortable with where they're going, then I would exit stage left. There are always individuals who are more keen on psychosomatic or psychogenic explanations than others.

Hope this helps.

 

I hope @MrMagoo gets any relevant help they need and finds the replies here useful. I also wanted to say although the occasional voice issues I have are minor I have always found them (like so many symptoms) somewhat interesting. So I’ve found the thread extremely informative, reassuring in a ‘oh it’s not just me’ way and want to give an extra special thank you to @Karen Kirke for taking the time and effort to give their insight.

 

Wow @karenkirkel that’s so helpful!
And yes, I think I have picked up bad habits along the way, which is one reason why I’d like SALT butI’d forgotten, so that’s now on my notes to raise at the ENT appointment.

 

Since you've already seen a number of ENTs and all have said your laryngeal exam was normal, I would think about making this ENT appointment your last (unless new symptoms arise). If you don't get the SLT referral you want from this appointment, I think your energy would be better spent getting your GP to refer you to Speech & Language Therapy, or, if finances allow, going to a private SLT who specialises in voice.

Ask for the appointments at a frequency you can comfortably manage without exacerbating your ME/CFS. And then if you're not seeing any benefit after a few appointments, cut your losses. You will still have learned how to use your voice in the healthiest way you can, so that you won't end up with an even worse voice problem. If you think it's helpful but you're shattered from the appointments, ask if you could have an appointment in 3 months' time, or 6 months' time.

Voice therapy with an SLT will not take away the ME/CFS-related part of your voice issues, in my opinion. But it should help you to take better care of your voice so that it's as good as it can be. Trying a few sessions of voice therapy makes sense for you because your voice bothers you, has been problematic for many years now and has gotten worse over time. But for most with ME/CFS, with intermittent hoarse voice that spontaneously resolves, I would say voice therapy would not be worthwhile.

You mentioned that you're concerned about being referred to a psychiatrist. In the hospital I worked in, psychiatry was not involved in the vast majority of voice cases. Psychogenic voice problems exist (not common), and there are psychosomatic elements to many voice problems, so it is reasonable that ENTs and SLTs consider these. Voice therapy is usually enough on its own to fix the voice problem.

It sounds like what you want to get out of the ENT appointment is a referral to SLT for voice therapy, right? If you explain that, then the ENT is likely to be happy. @Jonathan Edwards is right, there are no medical facts you can produce that will be helpful in that encounter.