Sjogrens Symptoms-Shortness of Breath

Thank you so much Brenda. I was just diagnosed but it's been 6 months since the symptoms started and had been trying to find out what the issue was. Im a bit in panic mode and trying not to. My skin is hot to be the touch when the symptoms act up. I have more than just dry eys and mouth. I have fatigue, numbness, cold chills, muscle stiffness. Seems like it's always something. Thanks so much for replying.

Hi Millie

My symptoms stayed at just dry eyes & mouth for a long time ,,, or so we thought then. I had & have tons of other symptoms. I also have lung issues, some or all of which are COPD.

From which I have learned this: when you have ANY lung symptoms, get them checked out, whether it's a dry nagging cough or shortness of breath. There seems to be a great reluctance to get treatment for the lung stuff by folks in the forum. This is, IMHO AND in my experience with serious lung problems, a mistake. Lung function preserved is a good thing, because once it's gone it's gone for good. One might not miss that first 4% but @ 10% loss & more it's noticeable. There are tons of excellent lung meds if a doc says you need one, regardless of whether the cause of the problem is SS or something else.

Hi aitarg,

Thanks for the info. I got my lungs checked before I was diagnosed and came back as ok but Im going to go to another dr to make sure. Thanks

Hi Glenna

That burning, with or without the needles &sharp pains sounds like Small Nerve Peripheral Neuropathy, which can come with Sjogren's. Because it affects small nerves it won't show up on EMG and/or nerve conduction studies. If you've got a neurologist, talk to him or her about it. I use gabapentin.

 

Hi Aitarg,

Thank you for the information. I will talk to my neurologist about it, but I did mention it to my neurologist.  I will also ask her about gabapentin! Does gabapentin work for you?

Thank you again

 

I am also having the same problem but for pain I am using paracetamo;. I had Brochitus  and after xray they found a small amount ofscaring on Lungs, that caused my shortness and pain, I take sudden  breath of air, without knowing when its going  to happen. Im told I over inflate my lings and that causes the pain in my rib muscles. I am awaiting more tests at the Queen Elizabeth Hospital and hope they ca get to the bottom of my worsening symptoms. I do feel for you, what your going through, infact all that have posted on here and I am so grateful you did.xx

Hi Megheart how are you now? Thanks for your coments i forget to reply or comment. Its been a while sice i reread your comment. Wishing you well, carol xx

Did you get your vit. D level up?

yes I am on  Vitamin D still, thanks for asking. I am waiting for a letter which i hopecomes soon as with all the sneezing, my ribs are  very painfull- I mentioned. this in an earlier post. its good to chat to others like myself  thanks.

I was diagnosed with Sjogrens in 2002, which I know I had it long before then. I have an enlarged spleen caused by Sjogrens. I've been having some shortness of breath since 2015, was sent to a pulmonary Specialist, did a MRI and showed my right diaphragm is to high up, did breathing tests and couldn't find the cause of it, said I just need to lose weight. I think this might be from my Sjogrens. Then 3 months ago I started having alot more shortness of breath, it's all the time. I even went to my Cardiologist and had an echo and stress test. They came out fine. She said I just needed to exercise and lose weight. I am only 15 lbs. Overweight. How do you exercise when you have shorness of breath all the time, when the doctors don't know what is wrong with you that is alway their answer. My primary doctor ordered a chest xray, it came out fine. She believes the shortness of breath is from Sjogrens and I needed to try and get in sooner to my Rheumatologist or go to ER. My appointment is the 17th, if it gets much worse I will need to go to ER. She said I don't have COPD. I was taking Evoxac since 2002, however my body got use to it and quit working a year ago. That is when my breathing got worse and so did my sjogrens. I also have Osteoarthritis, Raynauds. Last year I had abnormal lipnoids on one breast, thank goodness it didn't show up this time. I was on Quinacrine for eight years, it turned my skin yellow, so he decreased it to every other day, its a preventive to slow down the Sjogrens. He took me off of it and Mobic cause the shortness of breath.

Carol, I can relate to you. The muscles in my chest are painful everytime I take a breath. Alot of discomfort and tightness in chest. I am going to the ER Monday, cannot wait till my appointment to the Rheumatologist, It keeps getting worse.

Hi thanks for your message. Its been more than year since i was told i had bronchitis and in Feb i thought it was gone, the shortness of breath seems to improved since i can control the pain now with paracetamol only. Still the back of the ribs catch me, when i yawn or lie down or lift something. I had an MRI scan which shows more and reults are better than i thought. Just a small amount and nodules that they are not concerned about. It may help if they do MRI scan for you as a normal xray not as much shows up. It is the longest i have ever been slowed up, also had to have alot of time of work due to it. I have cut down to one morning only now. I am carer for hubby and with shoping, house etc thats enough. Take care Rosanna, hope things improve for you too.

Just noticed this text Rosanna, as for loosing weight yes it is difficult with breathing problems. If you geta chance to ask you specialist about your breathing problem - ask how much scaring is on your lumgs. I asume you are not a smoker. Lots of previous chest infections can cause scaring. As in my case. I have had the pneumonia vacination last year and now having the parnova 13 vacinaction (cobined several types of pneumonia vacines) to help as just the one is not giving me enough imunity due to S. S. hope this helps xx you sound like you've been through it xx

Carol, I did make it to ER Monday, they did a CT scan, it didn't show any scarring in lungs. Waiting to get into my Rheumatologist the 17th, to explain the results. Also had blood work, looks like it was a good thing he took me off Quinacrine, according to the work, it can affect the bone marrow. With doing some research, with my neck I finally figured out why I have so much problems with my it, the muscles are real weak. I'm hoping the doctor will order a MRI. Having problems sleeping because of neck issues, when I raise my head off my pillow, it hurts real bad, went and had a massage yesterday, it helped a little. I have trouble swallowing, always have to clear my throat. When I had the CT scan, they said they noticed I didn't take a deep breath, I said I can't, don't have the wind to do it.

Rosanna you poor love, i hope you have had some help now. I have just found out I needed to have the Pavnova 13 vacination I had tbe phnemonia vacine last year, but that didnt give me enough protection. I go back to check blood 6 weeks to check. I knew my imune system was effected, but last year was the worst i have been perhaps we should all have this, Nurse said children only normally have thus. Adults are given this in certain circumstances. I hope you arw feeling better soon. Knowing what we have helps us to cope when there aeent that many of us who are local to each other for support. There are Srogren's Syndrome groups in the Uk but not so local. xx

Now I noticed I'm also sometimes have trouble catching my breath, have alot of cramping and some swollen in my ankles. Glad to have the support from all of you.

Hi Rosanna, 

Everything you've described, from the type of doctors you’ve seen, tests done, and symptoms experienced, is EXACTLY what my mother has been going through for the past year. Only difference is she found her weight loss solution, and I'd never wish this level of pain onto anyone. On top of that, weight loss didn’t help even though it was something that played in the back of her mind about possibly helping at least a little. Tests don’t indicate mixed connective tissue disease or anything along those lines, but how can something this debilitating have no difinitive markers what’s causing it??? Diaghram is high as well, any further explanation of what that means long term or medications that can bring things to a normal (even periodic flare up) level? My mom is not doing well, I’m trying my best to help her and my dad, but some sort of solution that leads to relief is what needs to happen so she can have the energy to push forward for more answers. I convinced her to get her medicinal marijuana card since pain medication of all sorts doesn’t agree with her GI situation, but besides that glimmer of hope if there’s anything you can tell me at all, or everything, it would mean the world to me....if could save my mother. 

Erica, sorry to hear about your mother being in so much pain. I don't know if this will be helpful or not. I found a different Chiropractor and he did total body scan and xrays. I had been having alot of pain in my neck and all of my spine. He said after my adjustments, which is going to be a slow process, everything would work itself out, so I'm finding out the shortness of breath is from being out of alignment. I'm thinking that the diaphragm issue is from my out of alignment. Has your mother been to a Rheumatologist? Can you explain more about your mother's symtoms?

She has 2 rheumatologist, a pulmonologist, cardiologist, and the spine Institute involved. I've been pushing her going to a chiropractor for a while now, before the pain even, but my dad is old school and only wants a DO manipulating her spine. Unfortunately that's a dying practice since chiropractors became so abundant and affordable. I think if it comes down to all this pain verses letting a non medical Dr work on her, she may cave. So about her care, she's gotten CT scans, xrays, an MRI of only her abdomen, blood work many times, stress test, double heart cath, echo, upper endoscopy, bronchoscopy, and I'm sure I'm missing some things since I don't have  her entire medical record....she's tried different medications, some worked but have potential severe long term side effects so she takes breaks...she's just started taking plaquenil again since its her best shot on some relief, according to her rheumatologist. Her stomach hurts all the time from the pain pills she rotates through that it's hard for her to eat anything, plaquenil is just one more to cause her discomfort. I'm going to show her your response though so she can see that others have been told their backs are part of the problem. She's in a chair a lot, on oxygen now just to try something new that may help. I'm going to get her a new chair though, her posture is not good and she practically lives in that chair. Have you ever looked into comfortable reclining options, maybe a zero gravity chair? She doesn't like massaging or heating in chairs, she says after time you can feel the bumps from the cushion compressing. Thank you for your response, I'm on an active mission now. Since I responded to your post personally, can any of the others see these? If anyone else has I'm out or Amb experience like this, I'd really like to know everything I can. 

Erica, I've had stomach problems since I had my gallbladder out in 1994. I have gastritis, acid reflex, IBS. I am gluten free, that is the only thing that helped my stomach, you can have a blood test for celiac allergy, I don't have the allergy, I am intolerance to it. I have constipation and the Chiropractor said is related, and I haven't had that problem before. Everyone on here can see your comments, which helps me alot to understand my problems. I was lucky to find a Rheumatologist in 2002, that looked in my mouth and seen how bad my teeth were, sores in my mouth, my tongue sticking to the roof of my mouth, she didn't have to do any testing, to diagnose of Sjogrens. My neck is so painful, my neck bone swells up, and have to use ice pack on it all the time. We all want to know more about our health issues, since we are not getting answers from our doctors. There are support groups I know for Sjogrens, but not always close by. What did the Pulmonary tell your mother, if anything? My primary doctor has been more supportive than of my other doctors. My chiropractors office

Said I need to keep moving around. Which I tell my husband all the time, he is sick with heart problems. It's not good to sit too much, I know it's hard when you are feeling so bad, however it makes it worse if you don't. We just got new recliners last year, however realized it's not comfortable for our necks, thought we were getting good ones that are leather, they are also a lift chair.

I'm 63 & recently bought myself a lift chair. 1st for me it was important that my feet were fully supported by the chair and that it would go fairly flat. Both of these are becoming harder & harder to find in any recliner. Of secondary importance, I thought, was electric lift factor.

I can't sleep in the chair because of my back. That was a shock. But I'm still glad I got it. I don't have it lift further than into an upright position but the decreased wear & tear on my knee & hip is wonderful. My chair isn't leather because that stuff gets too cold, nir does the chair heat up or massage. You can adjust head, lumbar, foot and back positions independently.

Yes, we all see alk the posts in forums. If you want more privacy, PM the person.

Everything from pulmonary came up normal, so no answers to the shortness of breath from that department. As I read and cross reference Sjögren with other known diseases though, I’m increasingly becoming more nervous about her having lupus as well. Furthermore, I’m convinced that if she got her spine worked on and strengthened that her body would do much of the correcting for her. For all we know, poor spine health is where all of this started....no other history of autoimmune runs in the family. I just hope we are down to the final stretch of definitive treatment so my mom can feel good again. If anyone has been down this road and lupus was the underlying disease, please feel free to post. I need all the help I can get for her. 

Erica, I agree with you about going to a chiropractor, I really like the one I found. He doesn't pop the neck, he uses an instrument and therapy and he is having me use a stretch band on the back of my head to strengthen the neck and back. All of this is a real slow process. He said everything will work itself out, the nerves has everything to do with the whole body; including access reflux and constipation. My shortness of breath is somewhat better, I have started up walking starting out slow, my constipation is better, I was bloated so bad before, I was always miserable , not as bad now, and access reflux not as bad. I have had three visits so far and three with the Chiropractor I use to go to. Be sure to find one that has five star rating and does full body scans and he also did a xray on my neck. He also does the scans every so often. No one in my family has Sjogrens except my daughter, which she got from me, hers is obvious as my was.