I have an undiagnosed symptom that is so strange that explaining itself is a difficulty

ThutmoseChen

Hi all, I apologize if this is not the right place to post a rather long and personal story, but I have been struggling with my own emotion for so long that I just wish to be able to share, to write down how this condition makes me feel physically and mentally.

I guess the best way to explain what I have is to say that it is a rib cage/exhalation/speech issue. I know it is hard for people without this condition to understand how these things are linked together, but to me it is extremely real and it presents challenge to every aspect of my life. I don`t know how long have I got it, or if I was born with something wrong in my body, but the first time I noticed something is off was back in 2018.

I am a non-native English speaker, and in 2018 I attended a university that instructs in English. When I had to communicate with people in English for the first time, I felt a strong sensation that I cannot make certain sounds/intonations without physically exhausting myself. The sensation is extremely strange, I literally cannot pronounce sounds that require longer/deeper exhalation, so I had to constantly draw deep breath and try to talk with a strange tone that sounds mostly flat without much up and down. Not only that, I also struggled with listening, and reading. I found it impossible to follow some Americans who speak fast, which I assumed was normal, but I feel breathless just by listening to most speeches and feel that something is preventing myself from exhale alongside the speaker, the same goes to reading, I understand all the words and grammar yet I can only read one word at a time, if I try to read fast I feel out of breath.

I should have known something was physically wrong with myself at that point. However my understanding of the language itself was very poor so it was hard for me to tell whether it was because of my lack of exposure to English speaking environment, or that I have physical difficulty with speech. I also was able to speak my mother tongue without obvious disability, although I do feel exhausted, I found ways to function, and I think it is because my mother tongue is individual character based and requires much less effort to exhale when speaking/listening. So in the end I just assumed that my English skill was extremely poor and I needed loads of exposure to the environment.

In the past 5 years, I worked extremely hard on improving my understanding of the language (probably thousands of hours invested, not exaggerating), I was able to score very high on language tests, yet the extremely aweful sensation of something being grossly wrong still accompanied me. Eventually, I started to realize what has been the problem all along. I noticed something abnormal about the way my left rib cage/hypochondrium area feels during respiration. this part of the ribs almost cannot contract at all when I exhale (which is essential for speaking, listening and reading a language) , it feels awefully like something inside the ribs are pressing against it, making it very difficult for me to push air out of my lung. I don`t know how other people feel on their rib cage when they exhale, but I think what I feel cannot be a normal sensation. 

After noticing the abnormality, I immediately went to doctors and asked for various tests, they gave me CT of abdomen, chest X-ray, and gastroscopy, but all reports came back normal except that I have a small erosive gastrititis. I was prescribed esomeprazol and was told by the gastroenterologist that it could be the cause. I took the medicine, but it didn`t help at all. I consulted a few GPs and all they can come up with is that "probably too much air in your bowels", so  I took some drug for air reduction, it didn`t help either. I searched online, asked about my symptoms in so many different forums yet no one seems to understand my description, I started to realize that what I feel must be extremly rare.

I was told by someone that it might be somatic attack, and I thought about the possiblity, I`m willing to go through treatments if in the future specialists recommend me to, but personally I don`t think what I have is stress/anxiety induced. Some doctors told me it might go away by itself, but it has been 5 years since I first encountered it, and in the past years I cannot remember a day when I felt differently. The symptom is consistently presenting, and to think about all the confusion, stuggle and pain it brought to me is just emotionally overwhelming. I am going to enter a Ph.D. program in a few months, and for someone who need to read and absorb tons of written material, I am extremely slow at reading, and I still struggle with even simple daily communications. My friends don`t notice that because I feel more comfortable around them, I concentrate, use all my force and speak slow, giving myself time to breath deeply, but I cannot hold myself in a fast-paced conversation, I feel unatural, unable to function. In the past, I was able to remain positive despite of my extremely low functionality because I thought it was a normal learning process and in a few months/years I will have no problem. But that is not the case.

What breaks my heart the most is that I met some of the most important people in my life in the past years, and I know I cannot ever afford to lose what I have with them. Last year, before I uncovered the truth of my speech disability, I spent time with them, wonderful times, perfect times that I`ll remember and cherish for the rest of my life. I felt uncomfortable and unable to speak naturally around them, yet I had no doubt that in the future it wouldn`t be the case. Now? I don`t know, I am not sure if I`ll ever be able to function like a normal person, and that thought scares me day and night, I wipe out tears every morning and afternoon, when I start to think about what stands between me and my most cherished relationship. I told myself I will not give up, I am willing to do anything to overcome this seemingly impossible barrier. 

So, here I am, I am still looking for answers and try to put myself together to face what is awaiting me in the future. I am determined to do a few more tests and see if there`s issues with my respiratory system, rib joints and muscles, or maybe the organs inside the left hypochonrium area. Could it be neurological/psychological? I wish to find out too. I feel better after writting down my thoughts, even though I am still no where close to solving the mystery of my body. I hope this is not tedious reading and I will appreciate any input to the discussion under this thread. Thank you very much!

anisty

Hello, I'm sorry to hear you are dealing with this at the moment. I started my adult career as a speech and language therapist and I'm not aware that the English language requires any more exhalation than any other language. 

Have you mastered the art of diaphragmatic breathing? I just wonder if that is something you were taught and perhaps it has led to an awareness of the movement of your ribcage that you had never previously noticed?  


How are you on exercise? Are you able to walk/run/exert yourself - does it feel ok then?

Is the breathing problem all the time now - even when you are communicating to people you are very comfortable with in your native language?

I think the first step would be to think about the environments in occurs in. And those it doesn't. If it is now there all the time during the day, how is it when you are lying resting at night. Does it wake you up?


If you still live in the UK, you can self refer to speech and language therapy. You do not need to go via your GP. Simply call your local hospital and ask to be put through to adult speech and language therapy services.  They will be able to advise.

ThutmoseChen

@anisty Hello anisty, thank you for your wonderful response and questions. My mother tongue is Mandarin Chinese and I do feel a physical difference between speaking this language and English. If I have to guess, I think it is that in Chinese each character is one syllable, there`s less syllables and the force you need to contract your rib cage is more consistent? For instance to me, pronouncing "respiratory" is harder than say "Hu Xi", which is the Chinese equaivelant. It is hard to explain why I feel this way, but I just feel more resistence under my ribs when speaking words with more syllables/deeper tones.

As for diaphramatic breathing, I don`t think I mastered it, I became aware of the stiffness in my rib cage gradually when I tried to understand the source of my physical exhaustion when speaking. I am able to walk and run, I have no trouble inhaling, but I become dizzy fast, and am not able to push enough air out. I also constantly use my mouth to breath, as exhalation through nostrils seem to be harder.

The breathing problem seem to be present all the time, even when I`m talking to my parents in Mandarin, it doesn`t affect my speech as much, like I can function, but not perfectly. There`s four tones in Mandarin, and I have trouble saying fourth tone characters in a sentence. But in English it just feels much harder, there`s a wider range of tones and more syllables in a word, I feel much more comfortable if I speak one word at a time, and inhale deeply. I told my friend the truth, and they understand that I need to speak slowly and with more concentration.

The symptom itself is not painful, nor does it really put me in health danger, most of its damage is on my ability to use the English language, and now I think about it, probably other languages if I learn them as well. I have invested years in language training but I simply can`t function normally. I can speak, but with a lot of physical exhaustion, like I need to push against a force in my body. I no longer live in the UK, it is a shame, I do want to try out speech therapies, but I suppose they can only help me if I have an issue with controlling my tongue or vocal folds? 

Actually I have a question, when you try to actively contract your rib cages, do you feel a difference in the force you need? I feel like I have no idea how people without this condition feels when they breath out.

anisty

Speech and language therapy addresses all issues. In your case, you'd be best seeing someone who specialises in Voice. Voice specialists can help with your breathing, control of rhythm, volume and all features of prosody.  And - of course - diagnose the issue.


Ah - now I don't speak Mandarin of course but we did have a very brief introduction to some other languages when i did my training and learned about languages where tone carries meaning.

English is what's known as a syllable timed language - as is German. French is stress-timed.

We didn't come across this causing problems but it would make sense that breathing patterns vary, depending on which language you speak.


I would imagine that, for most people, breathing just comes naturally and causes no issue at all - maybe you know others for whom English is a 2nd, or subsequent, language and you could ask them?


Yes, in answer to you question - if i forcefully expel all the air in my lungs it requires effort but is not painful.  


Out of interest - did you have a stammer as a young child?  You might need to ask your parents if you don't remember!


I think a speech and language therapist would be able to diagnose, and help you with this - though i don't know what the service is like where you are. 

ThutmoseChen

anisty said:

Speech and language therapy addresses all issues. In your case, you'd be best seeing someone who specialises in Voice. Voice specialists can help with your breathing, control of rhythm, volume and all features of prosody.  And - of course - diagnose the issue.


Ah - now I don't speak Mandarin of course but we did have a very brief introduction to some other languages when i did my training and learned about languages where tone carries meaning.

English is what's known as a syllable timed language - as is German. French is stress-timed.

We didn't come across this causing problems but it would make sense that breathing patterns vary, depending on which language you speak.


I would imagine that, for most people, breathing just comes naturally and causes no issue at all - maybe you know others for whom English is a 2nd, or subsequent, language and you could ask them?


Yes, in answer to you question - if i forcefully expel all the air in my lungs it requires effort but is not painful.  


Out of interest - did you have a stammer as a young child?  You might need to ask your parents if you don't remember!


I think a speech and language therapist would be able to diagnose, and help you with this - though i don't know what the service is like where you are. 

Oh then I will definitely make an appointment with a voice specialist, although I`m living in a small German town right now so it could be hard. Yes I do think that the breathing patterns of Chinese just happen to be more friendly to someone who has my issue with rib cage stiffness. Out of curiosity, in your career have you met anyone who has speech issues because of anything related to their rib cage? My complaint just seem so unique that when I tell doctors that I find diffucult to contract my left rib cage they couldn`t even understand what that means, its almost like I`m the only person who have this in the world. I also talked to people with costalcontridis which is the closest thing I can find that is related to rib stiffness, yet none of them have trouble with their speech, most of the complaints are rib pain, not unable to move it.

I know many people who learn English as a 2nd language, they speak about having accents or not able to understand certain words, or maybe their tongues can`t move properly to pronounce certain words, but no one relate to my feeling of physical exhaustion. I guess you are right, for most people breathing just comes very naturally. 

I have never been told that I had a stammer as a child, nor were there any sign of speech difficulty when I grew up. That is why for many years I did not even consider the possibility that I have physical difficulty with English speech. But again, I grew up speaking only Chinese, and classroom English wasn`t something that requires speaking in China, at all. But I have been feeling this way ever since I had to learn to use English as a language 5 years ago, so I have to accept that it is a reality, not a bad dream I had last night.

Thank you again for the reply, and have a great Sunday night!

anisty

@ThutmoseChen - I have to come clean and say I haven't worked in adult speech and language for over 25 years now, and voice was never my area of speciality. I haven't come across your difficulty at all but I worked on the adult acute wards and not so much on the re-hab side of things.

Interestingly, i did meet a man many years ago who had had his entire tongue removed and still had very intelligible speech! He somehow managed to stretch the tiny root of tongue he had left where it needed to go!

All the best with getting this sorted.

ThutmoseChen

Another thing I forgot to mention is that when I exhale that uncomfortable sensation of left rib cage being "stuck" feel suspiciously like the organs underneath (bowels, stomach, kidneys) are being compressed and squished. I feel silly mentioning this everytime I see a professional, and they also don`t really think it is likely, however while they cannot provide an alternate explanation, this is how I feel and I am absolutely puzzled. It seems no one have ever heard of things like this before? 

Hannah_Alumni

Hello @ThutmoseChen

Welcome to the community  

Wow, that is an unusual grouping of symptoms and I'm so sorry you are going through them with very little answer as to why. I wanted to comment to say you are always more than welcome to vent here if needed and would love if you keep us updated.

I also, with your last comment, saw you feel like the organs under your left rib cage feel like they are being compressed or squished. I would check with a doctor / specialist that it isn't adhesions. It's where your organs stick together and can feel like a pressure pain. Something my friend had, they mostly occur after surgery so sometimes it isn't the initial thing thought of.

ThutmoseChen

@Hannah_Scope Hi Hannah, thank you for your comment, I already feel welcomed and listened to by you guys, I really appreciate your kindness! And yes, I will make sure to update about my journey on here, and I wish to show support to other members of this community who are dealing with undiagnosed/invisible conditions as well!

What you mentioned about adhesion is quite helpful as well, I will make sure to mention this to my gastroenterologist and see what they think. I don`t feel pain normally but the sensation of organs stuck underneath my ribs is always there, it is really abnormal. However I have never had surgery done in my abdomen, so it would be quite strange if there does exist an adhesion.

Hannah_Alumni

That's really lovely to hear @ThutmoseChen

Hopefully the gastroenterologist will be able to give you some more answers! My friends adhesions occurred because of an infection but I remember her saying the exact same when describing the pain, like a compressed, squished feeling. Fingers crossed you can get in to be seen soon! 🤞

ThutmoseChen

So a bit of update about me trying to figure out this mysterious condition. At some point I realized that poor spine posture contributes to this sensation and after working on correcting my spine curvicture, I was able to reduce the severity of the symptom to a certain level. What is more encouraging for me is the fact that now I can identify the affected area much more precisely than when I first made this post in February. Here is what I found out: This weird sensation of tightness, like something being squeezed uncomfortably by the ribs comes entirely from inside a section of my left 12th rib (the floating bottom rib), so this identification of "where" make me feel happy because now I can finally see the possibility of solving it, with the assistance from a health care professional who actually listens of course. Naturally, I went to nephrologists, as the sensation clearly comes from the kidney area.

The consultations didn`t lead anywhere unfortunately, as the nephrologist simply tell me I couldn`t feel the way I do because "imaging tests shows no problem". Here is what I think has made progression with specialists difficult for me: none of the kidney/bone/nerve specialists are trained in understanding speech production/perception, therefore to them, my complaint of speech difficulty simply doesn`t register. Actually, most of them automatically tell me to see lung specialists (which I have, and even done a chest CT to rule out respiratory system issues) once I say I find speaking difficult. I am very certain that my speech issue did not come from respiratory problem, but this tightness under the 12th rib. At this point, I feel that probably only a trained speech pathologist can help, like @anisty kindly suggested before. I have not yet able to talk to one, so here is hope.

@anisty can I ask your opinion on this if it is okay? I read a paper on speech production/perception a while ago, https://hal.science/hal-02986713/document it sort of confirmed what I have thought of myself, at least I feel it explains partially why an issue under the rib can affect my speech function. If I understood correctly, intercostal muscles contract during both speech production and perception to pull the rib cage downwards. So wouldn`t it make sense that the "squeezing" sensation under the 12th rib gets in the way and mess with speech function, especially when the rib movement during speech aggrevates the issue? 

I would appreciate any input, thanks!

Alex_Alumni

Thanks for your update @ThutmoseChen I'm glad you've been able to find out a little more at least. The knock on effects from different parts of the body can really be wide reaching can't they!

Hopefully you'll be able to talk to a trained speech pathologist soon  

ThutmoseChen

Thank you Alex. I also noticed that what I have perceived to be "tightness" sensation could actually be a pain that gets worse when rib tip moves downwards. At this point I know whatever is happening is at the tip of this lowest rib, it feels like the rib is poking on something. I wonder whether it is a special case of "the 12th rib syndrome" which from my reading has reported similar symptoms minus the part where the pain is aggravated particularly by breathing. Unfortunately most doctors I`ve visited have never heard of this relatively newly defined syndrome, let along consider the possibility of a rare varient.

Alex_Alumni

It can be frustrating when there's a lot of unknown's at play @ThutmoseChen, I wish you the best for finding out more when you can!

ThutmoseChen

So, here is another update and probabaly the weirdest and most bizzare discoveries I`ve made so far. For a while I have traced this sense of "tightness" pressure to the left 12th rib, but I haven`t been able to find out the exact location of the pain other than that it is aggravated by the movement of the said rib. I think my brain automatically imagine this problem to be directly underneath 12th rib because of the connection between the movement of 12th rib and the intensification of the "pressure".

Here is what I just realized, not with 100% certainty but it seems plausible to me that while 12th rib movement aggravates something, the something is not underneath the rib, but on my lumbar, approximately l1-l2 level, it seems to me that it is a dull pain that is on the spine, but it somehow syncronized with the movement of 12th rib in the sense that it gets worse when the rib moves, therefore to my brain it is like a pressure under 12th rib.

Has anyone heard of anything like this? Local spine doctors told me nothing is wrong with my back on this level, but I do remember having a little weird pain on that spine level when I move too much in bad postures. And this certainly sounds like a bizzare story, a lumbar pain causing speech problem? but what if I`m right? That would be crazy.