I really don't know where to start. I have had weird medical stuff since a child. Nosebleeds, retina's detaching in my mid teens, ruptured discs, heart valve issues, fatty liver and lots of allergies. I have pain in my upper right side under my lower ribs that radiates to the back. This seems to come and go and is mostly present after some allergic reaction or exposure. I am exhausted. I have been told I possibly have the connective tissue disorder called Stickler's syndrome. Last year a new rheumatologist ran some blood tests and told me about Sjogrens showing up. A couple of weeks ago our truck caught fire and burned. The toxic fumes I breathed in have me in bad shape. I get pneumonia often, even from handling pressure treated lumber. Now, my breathing is affected and the upper right pain is back with a vengeance. Has anyone had any of these issues?
As you read through all of the discussions we have here on the group, you will see everything that you mention, and in some way you can relate it to Sjogren's or autoimmune. I don't know of Sjogren's causing the ruptured discs, but it doesn' t mean it cannot be autoimmune related.
There is a turning point when we reach a place of no return and the stress responses that can turn on the autoimmune are as numerous as you can imagine, and could certainly have been from what you describe. We get to the point where we can no longer tolerate certain chemicals, foods, pollens, molds, bright lights, and whatever the cause, we are forever changed.
Poet, almost all of us have something besides Sjogren's so we'll be glad to talk about this with you too. I hope that you can get some solid answers from you Dr and start making the adjustments to avoid irritants.
We are so glad to have you with us, this is a really good group, and we are glad you found us!
Hi Poet, As SK said…so much can be related to autoimmune it can be hard to distinguish or tease out what is what. I have heart issues, etc that aren't related to SS but before I was diagnosed we were blaming the fatigue on that. At the same time, one of my heart meds actually reduces my Raynaud's syndrome that is brought on by Sjogren's.
If it helps you any I totally need a humidifier or i get nosebleeds. They only got bad this past year though I used to get them brutally as a child. My allergies have gotten really quirky lately as well as the respiratory type infections. Now, I am not a doc and you should always check things out but I can add that one of my bodies odder tricks is that the cartilage coating the ribcage actually gets inflamed, especially from stress. It get so bad it can hurt to the touch. It can make breathing painful and so on. That started in my mid-20s. (I am 45 now).
Being in a fire and the problems that can come with that are scary. I hope you stick close to a doc you trust for awhile. Otherwise, do the best you can to advocate for yourself and don't blow off any of your symptoms. Please keep us posted on how things progress.
Dearest Poet, I am sorry you have had so many problems. I never did test positive for Sjogren's but I have all the symptoms and more and have spent years trying to figure it out. Lately they've discover spinal stenosis which has its own group of pains/problems. I can really relate to your allergies. I have a severe allergy to smoke; if they are burning anything miles away, I am coughing and choking. Doct ors don't know why. I hope you find one who will help you. As for me, I've tried many prescriptions, many doctors and now have come to a level of accepting the things you cannot change; but if you can change it, do it.
Thanks for all the feedback. The truth is I don't really have a doctor that I trust completely. I often think they brush me off thinking I am a complainer. When I was 17, one of the best eye doctors in the field told me I was too young to have any major problems. Six months later I was having surgery for retinal detachments. Thank God I went for another opinion. I lost my sight in one eye because the doctor didn't take me seriously. My main complaint lately is the reactions since our truck fire. The swollen right side and pain there will not subside. I have had it in the past after allergic reactions, etc. I don't know if it is the liver, the kidney stone they see on the film or as suggested by someone here, possibly inflammation of cartilage. I hesitate to take new meds since I have had anaphylactic shock in the past. Whatever is going on, I know that it goes in like a remission, sometimes for a few years, but when it is back, it is here with a vengeance. I guess we all just want some relief.
Some of those symptoms do sound like SS or autoimmune in nature.
I was told the main indications for SS are dry eye and dry mouth and then of course, a positive blood test.
When you said this: " I have pain in my upper right side under my lower ribs that radiates to the back," it particularly got my attention. I get this on and off and have since my major SS symptoms showed up. I have no idea what it is. One doctor even took abdominal x rays....and nothing showed up.
At some point you might want to see a good rheumatologist familiar with autoimmune conditions.
I do believe the pain you may be describing is related to SSJ. For the past year on and off, my sister gets excruciating pain under right rib which radiates to the back. She has been hospitalized 4 times because the pain was as so bad her BP went through the roof. She has been tested for everything and nothing comes up.
Since I was recently diagnosed w/ lupus SLE, lupus nephritis, SSJ, connective tissue, Scelerdoma, Raynauds, etc, ect, ect, I read everything I can find about these illnesses. I came across the info below that I sent my sister and told her she needs to get tested for SSJ.
Q: I have been having a lot of pain in the upper right side of my abdomin and in my back. I have had a ct scan that showed a kidney cyst and that's about it.....I don't know what this is but it causes a lot of pain and discomfort what could be causing this pain???? Oh and I don't have a gall bladder anymore... I had it removed about 7years ago....thanks!!
A: RUQ (right upper quadrant) pain minus gallbladder can either be coming from the liver or small intestine (ie motility problems). If the pain is felt in the right side of the back as well, the kidney is still possible. This may take some more investigating to figure out, so keep working through it with your lead physician. Even if your liver function tests are normal, if you have an autoimmune disease, check for liver autoimmunity (smooth muscle and mitochondrial antibodies).
I have a new symptom for me and it sounds similar to some of your posts.
Recently I've been getting these very sharp pains in my sides and around to the middle of my back. Thank god they don't seem to last long. But unlike all my other pains I'm having a difficult time figuring out what movements set it off. Even fairly minor shoots of pain temporarily stops my breathing. Again, not for long, the sensation is like I'm having the wind knocked out of me without any external trauma. Every once in awhile I move in and set off a bad episode that makes me just stop everything trying not to move a muscle and to catch my breath.
I'm not sure what's worse constant moderate pain or feeling relatively fine and then having a sudden shot of pain with no warning.