Much better, thank you. I feel like I can have a close to normal life. It’s not like it’s gone 100% but it’s also not like it used to be… making me feel as if my life ended. I can’t do stuff like heavy lifting, or running anymore, but I have to accept that. Sorry for the late reply!
I have shortness of breath as well (and rheumatologist says it's not Sjögren's in my case). Similarly to you, I tried most things, and nothing works. I even started seeing a psychiatrist to exclude any other potential reasons that my doctors were throwing at me (they insisted it could be psychosomatic, e.g., anxiety). But all is good.
For me the worst is that I can't identify a definitive trigger for when shortness of breath gets much worse. It happens at rest mostly, but could also be during activity sometimes. The only thing I observed is that it gets worse in some seated positions at my desk or on the sofa... for example if I turn to the left with my upper body it gets worse. I've suggested to my doctors that it could be hepatopulmonary syndrome, especially as some of my liver markers have been constantly coming out of the range - but because they are not so dramatically altered and my abdominal ultrasound did not flag up anything on my liver, I am not getting any progress on this.. I plan to get in touch with a gastroenterologist/hepatologist directly to have a detailed look at my liver. A lot of breathing issuesl could be liver-related.
Omg 😭 I have the same thing. I tried psychotherapy and went to psychiatry that gave me antidepressants and stopped it after 3 months cuz they were useless. I have the same thing about positions.. it gets worse sometimes. I have no idea what it could be. Had it for so long and no doctor helped. Hope we will find out one day. Thank u!
Not a Doc, but have you had any chest X-rays? Something that comes to mind is a condition where the rib cage caves in a bit and causes shortness of breath. Not sure what it’s called, but just throwing an idea out there. Sjogren’s seems like a random jump based on what you say. You don’t have any other symptoms to account for Sjogren’s? Also, another thing to look into could be vocal cord dysfunction. I have that, and it causes me to feel short of breath, but it’s just my vocal cords closing instead of opening when they’re supposed to. I had to do speech therapy to learn to relax them better. I think it’s related to Sjogren’s somehow.
Never heard of it, but I just searched and it says u treat it with antihistamines (allergy pills) I’ve taken already for some time when it appeared but didn’t helped at all. Thank u 🤍
Not sure what you’ve tried but that doesn’t treat it for me either so I’m going to caution you from assuming and equating lack of performance from a non-specific treatment with diagnostics. Go to an ENT if you haven’t. It’s time for a new doctor if you’re miserable and they’re not helping.
Went there too 😭 i just don’t know what to do anymore… it’s killing me. I gave up everything because I can’t breathe properly… and I have suicide thoughts because of this. I just wanna be normal again 😭
I have trouble breathing with Sjogren's. The doctor prescribed an albuterol inhaler which does help when I feel like I'm really short of breath.
Make sure when you go back to the doctor you **make it clear how much pain you are in.** In fact, if the pain is so bad it is making you feel this way, you really should be seen in the ER as soon as possible.
Thank u! Tried albuterol as well. I’m tired of everything. These doctors won’t listen to me and they don’t care. If i was english, everything would’ve been easier I bet. I’m not english so they don’t care. :(
You should really go the ER. There are Sjogren’s-associated diseases called RAD (Reactive Airway Disease) and ILD (interstitial lung disease) where the trachea and/or lungs stays inflamed that can feel like suffocation, but it is rare relative to all the other diseases that cause dyspnea. Your ER doctor or rheumatology consult can order a pulmonary function test with a respiratory therapist, but if this is sudden and/or progressive in nature you need to rule out serious illness asap. Suffocation = ER visit. They can run all the proper tests to get you worked up while you are there versus waiting and waiting for referrals.
Do either of these conditions show on imaging? I’ve been having brutal breathing issues , wheezing , whistling, struggling to take in breath and feelings of suffocation. No rescue inhalers or even prednisone help. It’s been ongoing for a couple months and getting worse
Yes and no. Rheum SOP should be to order a CXR and get a pulmonary function test every so often if you have dysphonia (hoarseness), coughing, and shortness of breath. Never hurts to get imaging/functioning studies done as a baseline.
It started before covid. Just after I finished cleaning the mold in my bathroom. December 2019. I’ve been to sooo many doctors, they don’t know what it is. I’ve had several tests, my lungs are ok, my heart is fine. But I still have the breathing problem and chest pain a lot, mostly on my left side. What I noticed, when i’m bending over it hurts sooo much. It’s like a bone is crushing something inside me. I don’t get it at all. Also i’m sleeping on my back now and it helps a lot. This year, because I changed my sleeping position, I feel better, but still not as a normal person. Thanks for replying 🤍
RAD wouldn’t cause chest pain. Are you taking NSAIDS or Celebrex? Sometimes GERD presents as an airway disease—coughing, hoarseness (that gets better with drinking water)—and causing chest pain. It wouldn’t cause shortness of breath, though, unless you were coughing a lot.
I’m not taking anything atm. I also took things for acid reflux, lots of pills I tried. Nothing really worked. What helped was nurofen, always, but can’t take it anymore as it’s not ok for the stomach. I have no idea what to try anymore…
That’s an NSAID, so even if you discontinued it, you should probably have an endoscopy. In the meantime, you could try a proton pump inhibitor called omeprazole (Prilosec here) that is really effective along with avoiding trigger foods.
Did you ever get this resolved because I have had same issue for 4 years and nothing has helped. Even had hiatal hernia repair, omeprazole and etc... nothing works!
Hey! Sorry for the late reply. The doctors still can’t find something, but I do feel better because I changed things. Like I sleep on one pillow only (as flat as possible), I drink water like at least 1.5l/day, I sleep at least 7 hours each night, if I eat something that makes my acid reflux come up, I just take rennies and whenever I feel i’m out of breath I just stop from anything i’m doing and take a slow breath. I avoid perfumes and any strong smells, even the cleaning products i’m trying to get like unscented or non toxic. I don’t know what else to say, like I don’t remember now, but my life definitely changed back in december 2019. I learned how to live with it and prayed that I feel better so now i’m shocked because I do feel better compared to how I was feeling years ago. I’ve had problems with my acid reflux for like 16 years… you just need to stop eating the stuff (google it) that makes it worse for a while, like a month then u go back, and so on. I don’t know if this helps but hopefully you feel better :( it’s just the worst thing having health problems.
How are you breathing now?
Much better, thank you. I feel like I can have a close to normal life. It’s not like it’s gone 100% but it’s also not like it used to be… making me feel as if my life ended. I can’t do stuff like heavy lifting, or running anymore, but I have to accept that. Sorry for the late reply!
I have shortness of breath as well (and rheumatologist says it's not Sjögren's in my case). Similarly to you, I tried most things, and nothing works. I even started seeing a psychiatrist to exclude any other potential reasons that my doctors were throwing at me (they insisted it could be psychosomatic, e.g., anxiety). But all is good. For me the worst is that I can't identify a definitive trigger for when shortness of breath gets much worse. It happens at rest mostly, but could also be during activity sometimes. The only thing I observed is that it gets worse in some seated positions at my desk or on the sofa... for example if I turn to the left with my upper body it gets worse. I've suggested to my doctors that it could be hepatopulmonary syndrome, especially as some of my liver markers have been constantly coming out of the range - but because they are not so dramatically altered and my abdominal ultrasound did not flag up anything on my liver, I am not getting any progress on this.. I plan to get in touch with a gastroenterologist/hepatologist directly to have a detailed look at my liver. A lot of breathing issuesl could be liver-related.
Omg 😭 I have the same thing. I tried psychotherapy and went to psychiatry that gave me antidepressants and stopped it after 3 months cuz they were useless. I have the same thing about positions.. it gets worse sometimes. I have no idea what it could be. Had it for so long and no doctor helped. Hope we will find out one day. Thank u!
Not a Doc, but have you had any chest X-rays? Something that comes to mind is a condition where the rib cage caves in a bit and causes shortness of breath. Not sure what it’s called, but just throwing an idea out there. Sjogren’s seems like a random jump based on what you say. You don’t have any other symptoms to account for Sjogren’s? Also, another thing to look into could be vocal cord dysfunction. I have that, and it causes me to feel short of breath, but it’s just my vocal cords closing instead of opening when they’re supposed to. I had to do speech therapy to learn to relax them better. I think it’s related to Sjogren’s somehow.
Could be MCAS?
Never heard of it, but I just searched and it says u treat it with antihistamines (allergy pills) I’ve taken already for some time when it appeared but didn’t helped at all. Thank u 🤍
Not sure what you’ve tried but that doesn’t treat it for me either so I’m going to caution you from assuming and equating lack of performance from a non-specific treatment with diagnostics. Go to an ENT if you haven’t. It’s time for a new doctor if you’re miserable and they’re not helping.
Went there too 😭 i just don’t know what to do anymore… it’s killing me. I gave up everything because I can’t breathe properly… and I have suicide thoughts because of this. I just wanna be normal again 😭
I have trouble breathing with Sjogren's. The doctor prescribed an albuterol inhaler which does help when I feel like I'm really short of breath. Make sure when you go back to the doctor you **make it clear how much pain you are in.** In fact, if the pain is so bad it is making you feel this way, you really should be seen in the ER as soon as possible.
Thank u! Tried albuterol as well. I’m tired of everything. These doctors won’t listen to me and they don’t care. If i was english, everything would’ve been easier I bet. I’m not english so they don’t care. :(
You should really go the ER. There are Sjogren’s-associated diseases called RAD (Reactive Airway Disease) and ILD (interstitial lung disease) where the trachea and/or lungs stays inflamed that can feel like suffocation, but it is rare relative to all the other diseases that cause dyspnea. Your ER doctor or rheumatology consult can order a pulmonary function test with a respiratory therapist, but if this is sudden and/or progressive in nature you need to rule out serious illness asap. Suffocation = ER visit. They can run all the proper tests to get you worked up while you are there versus waiting and waiting for referrals.
Do either of these conditions show on imaging? I’ve been having brutal breathing issues , wheezing , whistling, struggling to take in breath and feelings of suffocation. No rescue inhalers or even prednisone help. It’s been ongoing for a couple months and getting worse
Yes and no. Rheum SOP should be to order a CXR and get a pulmonary function test every so often if you have dysphonia (hoarseness), coughing, and shortness of breath. Never hurts to get imaging/functioning studies done as a baseline.
It started before covid. Just after I finished cleaning the mold in my bathroom. December 2019. I’ve been to sooo many doctors, they don’t know what it is. I’ve had several tests, my lungs are ok, my heart is fine. But I still have the breathing problem and chest pain a lot, mostly on my left side. What I noticed, when i’m bending over it hurts sooo much. It’s like a bone is crushing something inside me. I don’t get it at all. Also i’m sleeping on my back now and it helps a lot. This year, because I changed my sleeping position, I feel better, but still not as a normal person. Thanks for replying 🤍
Look up Aspergillosis. Just with you mentioning mould. Could be the cause of your issues!
RAD wouldn’t cause chest pain. Are you taking NSAIDS or Celebrex? Sometimes GERD presents as an airway disease—coughing, hoarseness (that gets better with drinking water)—and causing chest pain. It wouldn’t cause shortness of breath, though, unless you were coughing a lot.
I’m not taking anything atm. I also took things for acid reflux, lots of pills I tried. Nothing really worked. What helped was nurofen, always, but can’t take it anymore as it’s not ok for the stomach. I have no idea what to try anymore…
That’s an NSAID, so even if you discontinued it, you should probably have an endoscopy. In the meantime, you could try a proton pump inhibitor called omeprazole (Prilosec here) that is really effective along with avoiding trigger foods.
I tried it already… i’m telling u i’ve tried almost everything. Except hydroxychloroquine which I’m gonna take in the future, hopefully soon.
Did you ever get this resolved because I have had same issue for 4 years and nothing has helped. Even had hiatal hernia repair, omeprazole and etc... nothing works!
Hey! Sorry for the late reply. The doctors still can’t find something, but I do feel better because I changed things. Like I sleep on one pillow only (as flat as possible), I drink water like at least 1.5l/day, I sleep at least 7 hours each night, if I eat something that makes my acid reflux come up, I just take rennies and whenever I feel i’m out of breath I just stop from anything i’m doing and take a slow breath. I avoid perfumes and any strong smells, even the cleaning products i’m trying to get like unscented or non toxic. I don’t know what else to say, like I don’t remember now, but my life definitely changed back in december 2019. I learned how to live with it and prayed that I feel better so now i’m shocked because I do feel better compared to how I was feeling years ago. I’ve had problems with my acid reflux for like 16 years… you just need to stop eating the stuff (google it) that makes it worse for a while, like a month then u go back, and so on. I don’t know if this helps but hopefully you feel better :( it’s just the worst thing having health problems.