It’s 05:02 at night and as always I’m sitting up because I’m short of breath. ( for years now) they gave me inhalers ( allergic asthma) but it doesnt really help. My stomach is always swollen. I have seen specialists and done tests. (I’m not hyperventilating) this has been checked as well. It’s like I have to yawn deeply to get a feeling I am getting air. I also have troubles swallowing and it’s frightning when eating… Eating isn’t nice anymore have to have water with it because I often choke or have the feeling it’s not going down.
I feel so desperate and alone in this. People around me can’t help me I have support but I still have to go through it alone like all of you.
I can’t go out normally because I’m very dizzy all the time and it makes walking and doing things very hard.
I used to work fulltime + gave sportsclasses at gyms. Now I can barely get out of the house
It’s the most terrible thing that has happened to me.
I’m a strong person, but I don’t understand when people say ’ dont let the disease define who you are’… I mean, no matter how mentally strong I am, to stay positive or enjoy the little good moments, the disease does define me. I can’t say I will just go out and play sports, or go for a walk etc etc because I literally can’t because of this illness.
Right now I’m just having a bad moment and feel like it’s never going to get better.
It’s just that things got worse with years.
When I’m “ok” and not extremely short of breath / dizzy I keep busy by being creative and make art.
But this is very difficult… Feel like I am wasting life in bed and inside of my room…
I don’t know if there is anyone that experiences what I feel. My diagnoses was Sjogren/ Mixed Connective Tissue Disease.
Thank you for taking the time to read this.
Ingrid ( Netherlands)
I'm not a medical professional, but would like to ask if you have seen a pulmanologist?
Ingrid, I have read a lot about swallowing problems on the Chiari community. Many Chiarians also have connective tissue disorders. I wonder if you have been evaluated for chiari? Chiari can also cause breathing problems such as the ones you describe. You may wish to join our Chiari community to learn more. There is a link to it on the Main Page of this website.
Hi Sk, thank you for your message. Yes I see a pulmonologist and Rheumatogist. The pulmonologist gave me the inhalers because I have allergic asthma and also many foodallergies. They thought of pleurisy be ause of the pain. But they can’t really find what causes it. The doctors tell me it could be Sjogrens or MCTD because it affects so many parts of the body. But it’s do difficult when there’s no medication for a little relief. I’m still searching… Thank you so much for taking the time.
Oops, hello Dancermom
Thank you for your tip. I never heard of chiari,so will look into it and ask my doctor.
Thank you so much.
Ingrid, I forgot to ask the obvious. Do you smoke? or are you exposed to second-hand smoke?
No, never smoked in my life. Never exposed ( at least not at home) only public places… Also no alcohol… Today I feel like I have been beaten up. No energy at all. Thank you for your interest! Wish you a good day
I hope tomorrow is better for you, Ingrid, and that you get some answers soon. Sometimes, going to the wrong kind of specialist can head us in the wrong direction. I went to an allergist for breathing problems once, and she put me on steroid inhalers, when the real issue was a chronic sinus infection I didn't find out about until I made my way to the ENT. Keep checking in with your primary care doc to exchange ideas about possible causes for your breathing issues.
Yes very true. My diagnose came after years of being ill. Thanks for the advice, will discuss this with my GP.
Did your breathing problems get better?
Have a good evening~
Ingrid, I am sorry to hear you are suffering so much. Its tough enough to deal with SS by itself without the mixed diagnosis. Dancer Mom is right about different specialists too. Whenever I suspect any kind of respiratory infection, etc I don’t go my GP or anyone else anymore but my asthma & allergy doc. He has an understanding of the entire system and how SS affects it. I’ve gotten better treatment there than anywhere.
I wanted to add too, you are so right about people saying “you are not your diagnosis”. True to a point, we are whole people. But, they don’t always understand that we are in a position of having to add this into our new definition of self and that it really does take up a lot of space. We have no choice but to make adjustments. It doesn’t have to be consuming, and I hope its not for you. Learning to process and find the new you is something to take your time with. Sending gentle hugs.
Thank you very much for you message. I try my best each day… Have a wonderful day
Ingrid, I have been reading up on Sjogren's, and swallowing difficulties can be part of it, due to the esophagus and pharynx being dry. So, Chiari may be the wrong path...
I had a lot of trouble with dizzness and breathing. I saw an ENT and discovered ear problems that were affecting every thing. After surgery I have had some relief. I hope you feel better soon.
I was going to suggest you see ENT! But noticed after reading comments, it has already been suggested. My SJS is a new diagnosis, and relatively quick, I started having breathing issues. Come to find out, I have thyroid problems! I see ENT tomorrow! Hopefully I will get some answers. I would discuss this with your GP. Hope you feel better soon! ((Hugs))
Benign Esophageal Stricture is an extraordinarily common consequence of SjS. Its commonly treated in the US, less so in the EU. Its most common cause is being overweight and/or acid reflux thus the high incidence in the US. The more time you spend in bed the worse it will get and the more muscle tone you will lose. If you are not on your feet or at least vertical 10 - 12 hours a day, you quite frankly will have more and more negative effects that have nothing to do with SjS. If all you can do is walk 10 feet then you do your darndest to walk 11 then 12. If you can only stand or sit up 10 minutes then you push to 11 then 12. The instant you don't push for more than you have got you are defined by the disease.
Years ago I was US Army Ranger that used to jump out of airplanes and helicopters to "take care of bad guys" That defined who I was then. It certainly doesn't define me now.
When in bed anyone with should lay on their left side, this will help along with elevating the top half of their body to prevent scaring of the esophagus from dryness.
In the meantime see Gastro doc to get checked out it can become Erosive esophagitis very quickly. The asthma like symptoms can cause some problems too.
What ever the cause YOU have got to get moving
Thank you ‘purplebutterfly, Dawn, tj1 & Dancermom’ for your advice and thoughts. Yesterday I had a terrible pain attack when I was just about to leave the house. It came suddenly and I couldn’t move, walk talk anything. It’s my stomach and I’m having lots of problems which are getting worse now. Years ago it was because of diverticulitis. I really hope I’ll get the right help soon. Thank you all~