Difficulty breathing + feeling of "lump" in throat

[Mariah]

Hi,

I haven`t been discussing much of my symptoms with fellow M.Eers ever, så everytime when I get a new or worsened symptom (I have the progressive form of ME) I get curious as to how or if others experience the same as me. This time it`s about breathing.

I`m in a spiral downwards maybe the last year or so which won`t seem to stop. And now a symptom which comes or worsens from time to time (seems to always be there to some extent) has worsened with a fury. I have difficulty breathing. Even just sitting, or lying down, can`t seem to resolve it, I have trouble just sitting still. And forget about any activity. It also seems to be directly related to what I would describe as a feeling of a lump in my throat ( a globus sensation some call it). Some would maybe describe is as a feeling of the throat being tightened or inflamed, leaving only a small airway, but I distinctly feel a lump that is "not there". This goes together with my chest muscles feeling really fatigued, pain in the chest and the throat like the pain you get in your throat after running a long distance at high intensity, and the feeling that I can`t get enough air in. In short, this causes me, or at least is a part of, my difficulty breathing. Has anyone else experienced this and have some input on what this could be? I could add that I have had some reflux, but that this has been under control with medication for a long time, so I really doubt that that is the culprit. This is also something that has haunted me from time to time from when I first showed small signs of later being sick, to now. Being out of breath really is a vicious and debilitating symptom.

 

[deleder2k]

What is your heart rate?

 

[Mariah]

I only have an app measuring heart rate, I don`t know how credible they are? Anyway, it says 77. I take beta blockers btw, one just before I go to sleep (different time sones, so haven`t taken one now in about 22-24 hours and am just about to take one. But they are depot-tablets, so the one from yesterday might still work a little bit). I`ve attributed this more to a neuro-muscular thing because of the distict lump-feeling and tight throat/sore throat muscles and chest muscles thing. But maybe it`s also something to do with the heart?

 

[minkeygirl]

I have a lot of problems feeling like I can't get enough air, although I don't have the lump. I am however oxygenated so it's not pulmonary. I also feel like someone stuck a vacuum down my throat and sucked the air out of my lungs after talking with a sore throat.

I have yet to figure out what it is. I think it's one of those things we'll figure out by a fluke. As for your medication not being the culprit. I've had things go haywire on me out of the blue so you can't completely rule it out. In fact one of the things that gives me what aggravates this is a beta blocker. I can take only a small amount before it feels like I'm having bronchial spasms. So you can't rule anything out.

Oh I also tried an asthma inhaler and it did nothing to help.

 

[lansbergen]

I`ve attributed this more to a neuro-muscular thing because of the distict lump-feeling and tight throat/sore throat muscles and chest muscles thing.

I also think it is neuromusculair. I had it very severe. It is much better now but not over. I still get it sometimes, last night I had an attack but that did not last long.

 

[Snookum96]

I have the same issue where I feel like I can't get enough air. It does sort of feel like my airway isn't big enough to get the amount I need.

don't know what causes it. I've not seen a lung specialist, just assuming it's part of all the weirdness this brings us

 

[Mariah]

@minkeygirl Yes, from what I`d read I thought the respiratory problems and difficulty breathing were relatively common in ME patients. I just hadn`t read as much related to this feeling of something being in your throat and almost blocking your airway. I can relate to the feeling of not getting enough air, I also have that. The reason I am ruling out the betablockers is because this problem started long before I ever started on these, and has varied in intensity ever since. It could of course be that they triggered the underlying problem, but I don`t think so since it`s actually not that many months ago since I reduced my dose.

@lansbergen "Good" to hear that someone can relate to this exact description, allthough I don`t wish this on anyone. Mine are pretty chronic now since they started again about a week ago. Just hoping it`ll get better with time, but as I have the progressive form of this horrible disease I can`t put all my money on that.

@Snookum96 Thanks for your reply, I can relate to your description. I think some would describe it as feeling like they have a really really "tight" throat if that makes any sense, while I am describing it as a "lump" that isn`t there. It all depends on how we individually interpret things. It really can be quite horrible and the chest feels so heavy. I unfortunately also things it`s just "one of those things". All the stuff we have to learn to live with..

 

[alkt]

you may need to increase your antacids for acid reflux. because acid reflux can also worsen over the years and scar you throat enough to change your voice. i now take a proton pump inhibitor every 12 hours.

 

[WillowJ]

I was told the lump was related to allergies, and to take lortadine. It didn't help.

Later my lung doc told me to take zyrtec (I use a generic) because it doesn't change HR, and this actually works better for allergies (to me; I know others who do prefer lortadine). Whether from that or the asthma and inflammation medicines (both for asthma and ME lung inflammation), the lump rarely bothers me any more.

My O2 saturation is usually fine, also (except right after walking, but they say this is a fluke and write down the better, later, number). Some ME docs suspect that either the hemoglobin holds the oxygen too tightly or it is not taken up by the cells (as cellular metabolism is wrong?). This is all just guessing. Another guess would be that the SOB comes from a problem in the brain and is not related to O2 or lung function.

I also have weak lung muscles (there is a test for this but it's not a routine test--they only run it if they think of it). I have no treatment for that. But it seems better with the inflammation asthma medicine.

Of course everyone is different, and it's possible others have different issues from mine.

Supposing it's related to allergies or asthma or lung inflammation (from asthma, ME, whatever) or weak lung (or throat) muscles or even reflux, seeing a lung specialist (if you are able to get to the doc at all) could help because they may know about all that stuff and can advise you particularly for your case. Hopefully you find one as smart as mine.

 

[Gijs]

I also have probems with breathing one of my main symptoms. I have also a heavy feeling on my diafragma and stomach/gut like i can not get this go up and filled with air. It get worse with to much exercise. A very nasty symptom. I don't know what causes this.

 

[Mariah]

@alkt I don`t think this is the culprit, allthough some descriptions of this globus sensation as they call it say that GERD is a big reason for this. But it doesn`t mention anything to to with breathing. But I`ll try your advice and up my dosage to two every 12 hours in stead of just one every 24 hours. At least it doesn`t hurt to try and I am willing to try anything .

@WillowJ I`ve actually tried an asthma inhalor for this a long time ago and it didn`t help, and I also don`t have any allergies that I know of. But trying a course of zyrtec of course couldn`t hurt as it`s not even a prescription drug. I`ve also measured my o2 saturation when this has been at it`s worst, and it is fine, so it only feels like I`m not getting enough air. I would think the problem is more in my throat area, as it is where I feel it most, and not in my lungs. I`ve had my lungs x-rayed also one of the first times I had this. How did you find that you had lung damage from the ME and what medicine do you use for it if I can ask? I am tired of going to specialists, mostly because no one has any knowledge of ME. Also, this doesn`t seem to be spesifically a lung issue.

@Gijs Thanks for your reply! It is indeed a really nasty symptom.

 

[MikeV]

An inflamed or overactive thyroid gland can cause the sensation of a lump in the throat. I take doctor prescribed thyroid medicine to treat hypothyroidism, and when the dose has been too high I get a lump in my throat, and swallow constantly.

 

[Mariah]

Thanks for the input @MikeV , I was acutally made aware of this today. Even though I may not think it fits all the symptoms, I`m definitely going to the doctor to have the bloodtests for this!

 

[SOC]

@Mariah, this is highly unlikely but should be checked out just in case... Breathing difficulties and the lump-in-the-throat feeling can be early signs of ALS (motor neuron disease). While it's only a very small chance, it's not something you want to miss. If you haven't mentioned those symptoms to your doctor, you probably should. If you also have muscle weakness, as many PWME do, make sure you mention that as well.

I wouldn't worry at this point because there are quite a few other probabilities for reasons for those kinds of symptoms, but I also wouldn't let it pass without eliminating that possibility.

 

[justy]

I also have this problem and feel like I am getting closer to an answer.

1. I have been diagnosed with chronic Chlamydia Pneumoniae, but cannot treat it with antibitoics due to:

2. mast cell activation issues. I have MCAS and wonder if this is very much part of this. My MCAS is so bad at the moment that I am reacting to more and more things and having multiple reactions a day. High acid production is also common in mast cell/histamine issues. I take and H1 and an H2 blocker and now need to find a mast cell stabiliser to add in.

It may also be partly neurological - mine is worse when my over all health is worse. I also have neuro lyme, and I know many with Lyme and co infections have this issue.

Depsite having asthma for many years my respiratory consultant feels this is not anything to do with asthma.

 

[MikeV]

Mariah, Your symptoms sound very unnerving; I really hope you find relief soon.

 

[aquariusgirl]

@justy who diagnosed your mast cell disorder?

 

[Mariah]

@SOC: Thanks for the input! I was just at a neurologist a few months ago to check up on some pain, and everything was fine then, so I believe that this may not be a likely cause of my problems. But the main reason I believe it is not a likely cause, is that I have had this for many years, always varying in intensity, but has become particularly bad the last weeks. I am also in a downward spiral ME-wise. But it`s quite intersting information anyway, as this give me a little clue that my inclination of believing this is neuro-muscular in origin and a part of my ME (my neurological symptoms are many and very severe) may be right.

@justy : How great that you have found some answers! I am just not sure that I feel that my problems resemble any kind of infection or lung issue. It flat out feels like something is wrong i my throat and chest muscle-and neurological wise. I find it a little hard to explain, but just like you say, it gets worse with my overall health which has been deteriorating the last year as my ME is progressing more and fast. But I will ask my doctor about my problem (just have to get over a cold that I seem to have contracted) and I will also ask that she perform tests for infections like the lung infection you are mentioning. Wishing you relief with your symptoms!

@MikeV Thank you very much, and the same to you!

 

[SOC]

I was just at a neurologist a few months ago to check up on some pain, and everything was fine then, so I believe that this may not be a likely cause of my problems.

That's great news! Best of luck sorting out the root of your symptoms and finding some ways to alleviate them.

 

[justy]

The infection chlamydia pneumonaie can have the type of symptoms you talk about...it becomes widespread, not just in the lungs. Its not that kind of lung infection. The other infections - Lyme etc are also not lung infection but can cause these problems.

My symptoms also feel very much like you describe. Did you consider mast cell issues? that you are possibly reacting to things in your environment? mast cell activation can also cause overall worsening of your general health...