I am new here and struggling. About 20 years ago I had a positive ANA and they said I had lupus. After several years on Plaquenil they decided I didn't have lupus. I continued to have worsening joint pain and stiffness and I was told it was just arthritis. I developed kidney issues and now am 3rd stage. I have asthma and cough for no reason per my lung guy. Recently it came to the point that I now need a knee replacement and struggled to walk around and even get out of a chair. My new primary listened and ran labs and now I have Sjogren's. that was 2 weeks ago. Right after seeing the rheum I developed severe pain in my rib. I also had pain under my rib that seemed to radiate to my breast. The md covering for my primary said I had costocondritis and that there was nothing wrong with my organs. Well the rib pain subsided but the pain in my upper abdomen under my ribs did not. I have lost my appetite and am nauseaus and losing weight but in this guys opinion there is nothing there.
I am frustrated with this and as of today was thinking of the ER. Is this typical SS symptoms? Am I being crazy and worrying?
cassi welcome , and sorry you had to find us. Yours is a typical question on the boards, so many are told the same thing,
"its all in your head "or "we cant find anything wrong" etc'
Well we know it is not all in your head, main thing is to get and demand treatments for the symptoms you are showing.
Any Doctor whp refuses this , move on!
You will probably get more information from others more knowlegeable than I am, but I do know we have to be strong, and push these Doctors for answers.
Search around the site and find posts similar to yours, but I am sure you will receive more replies soon.
Good Luck, Dolly x
No Cassi you are not crazy. Probably need to document your symptoms and get copies of the testing you have had. Then you need to find a very good rheumatologist who will treat you. There are some very good articles on this site about sjogrens and its complications. Any doctor who will not listen to you....move on. Good luck. CK
Welcome Cassi
While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.
With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three Ss of Sjogrens.
Cassie I have had terrible right upper abdo pain for the last 4 years they cant find anything. But the pain makes me curl up on the floor on a ball, they thought liver, gall bladder pancreas, sphincter of oddi ulcers they just dont know why I have this pain. As long as my liver tests come back ok they said they cant do anything, nothing shows up on ultrasound, mrcp, CT..the only test they havnt done cause I refuse is ERCP.
It starts under the right ribcage, and seems to radiate to the upperback shoulder blade area and into my right breast..its god awful
Thank you everyone but I have a primary that I love but he has a partner who should never have gone to medical school. I was desperate for help when I went to see him. I have dumped other md's for treating me the way he did but when you are in so much pain you hope for a better response. I have a rheum that I saw for the first time and she seems ok. She is actually a PA. The regular rheum had no apps and I was pretty sick. I knew him a long time ago when they thought I had lupus so I thought I would try him again. I may stick to the PA since she seemed to listen and seemed thorough. Only time will tell.
I am not a youngster anymore and have lived with joint pain and stiffness for the last 20 yrs of my 61 yrs. the pain I have been experiencing lately is totally unexpected and interfering with my ability to work. It far exceeds the pain levels I have previously known. It is driving up my b/p and the ibuprophen is probably damaging my remaining kidney function. the words Sjogren's and costocondritis weren't in my vocabulary before this. I am not fond of surprises and I can tell you that I am not happy with a disease I can't pronounce that may offer up more unpleasant surprises.
Thanks for your welcome.
Hi Cassi,
Anytime I have rib/chest/under rib pain, I have been instructed to go to the ER immediately - even if the severe pain was two days ago by the time my communication gets a response. The fear is of a heart attack.
As I understand it, heart attack symptoms in women can be quite diverse and unique to each person. If your chest pain gets really bad, you wish to actually to go to the ER -- any of my doctors would tell you to go even if you are even thinking about it.
Aside from having a heart attack, yes - Sjogren's can affect the heart area in the chest in a variety of ways. There are different tests selected for what is suspected that might be wrong.
You should follow the advice of your own doctors, not me.
For fear of a heart attack, the basic routine for a heart-pain/ER visit was: an EKG, followed by installation of heart monitor in an overnight stay in the hospital. When I failed a passive stress test, they inserted a little camera into my heart and looked for blocked arteries. I was "clean" in that regard, and was ultimately discharged.
Two years later I went back into the same ER for the same pain. I was not enthusiastic about doing this, but could not deny the pressure, which felt like an elephant standing on my chest. Additionally, I had left-side heart pains for years that have been largely ignored by doctors.
Well, after the EKG, and a chest X Ray, followed by a CT scan, nothing was found wrong with my heart. Nonetheless, I was required to spend the night in the hospital again, same as two years ago, connected to all of the wires.
The cardiologists assured me quite confidently in the morning that there was nothing wrong with my heart, all the EKG's were fine, nothing to worry about, etc., same as two years earlier.
When my Rheumatologist, who had in recent months caught fibrosis of the lung, small airway disease, and an embolism in each of my lungs, asked me what I thought about the heart evaluation a couple of days later, I told him that I still had the pain intermittently, and that I would rather die of the pain or heart failure than ever return to that hospital - the hospital that has the finest cardiac unit in this region.
To my dismay, this excellent Rheumatologist ordered yet another heart test for me; an "echocardiogram", which is an ultrasound of the heart. I had no interest in this test whatsoever, but made the arrangements.
The results were kind of astounding - they almost didn't let me go home.
I had mild left ventricular hypertrophy, a problem with my heart relaxing after contraction, and mild mitral valve prolapse (left side of heart). After telling doctors for six years that the left side of my heart hurt, and badly at times, this was somewhat gratifying.
The gratification was short-lived. Now I have diagnoses of both heart and lung trouble. And yes, all of this trouble is common in Sjogren's disease - I can provide recent references, dated 2012 and 2013, that discuss this, although it has been increasingly known for well over a decade now.
Other things that cause chest pain include costochodritis as you know and which I routinely have, pleuritis which I suspect I frequently have, and pericardis which I don't believe I ever have. Also, those potentially-deadly lung embolisms hurt like heck and almost took the life out of me.
So, there are a multitude of things which can cause chest pain that are well known to be associated with both Sjogren's and Lupus. There can be gall bladder problems, stomach ulcers, blocked intestines, and various cancers. Try to get diagnosed, and keep trying! The pain and problem is real, the doctors just can't figure it out yet.
I suggest that people who have severe chest pain actually go to the ER, and don't worry about going back more than once. If your chest hurts badly, something is wrong, no matter if they tell you that you are fine. Anyway, this is what I will do for myself now.
After re-testing my heart pain two years later, and having all of my previous and recent records of everything, I was again clearly told nothing was wrong with my heart before being discharged, by the cardiologists on the floor. Within a scant week, it turned out that there is quite a lot wrong!
This all fits with my theory that things have to get really really bad before the average team of doctors can diagnose it. I don't know enough to judge them for this - I don't know if I could do any better myself if I was a doctor.
However, I know one thing for certain - I have a superb Rheumatologist, and he is not one of the "world famous" experts at some national center. Really good doctors are in the minority, however, they are everywhere -- the big trick is finding them.
I hope people can learn something from my experiences, although I am not sure what. However, if you say you have chest pain and the doctors say you don't, I know who I believe: you!
Paisley, thanks for telling me this. I just woke up and took care of the pets and so far I feel ok. That was the way yesterday started and by the time I got to church I got hit with a new wave of pain. I plan to follow up today. You are right. When the pain first hit me in the chest I wondered if I was having a heart attack. When it hit what felt like under my ribs I thought there was something wrong with my organs. It doesn't help that I am also experiencing pain in other parts of my body at the same time. I feel sadness and wonder if this is what the rest of my life will be like.
You reminded me that I have had several occasions that I have had chest pain and a feeling of pressure by my sternum. I have had ekg's and an echo and each time was told there was nothing wrong. Now I wonder if it was the beginning of what I experience now.
Can you tell me how long ago you were diagnosed and how long it took for treatment to help you feel better?
Paisley,
What meds are you taking for your sjogrens lung problems and are they working? Do you have a specific labeled name for the lung disease that you have? And what were your symptoms, if I may ask. I have been struggling with exertional shortness of breath for quite a while and a dry cough. Thanks in advance. CK
Hello, and I hope you find out soon what is causing your pain. That is frustrating waiting, and wondering what it is. I will include you in my prayers.
susanep :)