Hello! I am new to this forum and I am here because I am feeling lost when it comes to my health issues. I have been dealing with dry eyes for years and always wondered if I had Sjogrens because it runs in my family. About two years ago, I began dealing with many other health issues in addition to the dry eyes. I had my gallbladder removed due to severe abdominal pain. I didn't have stones, just a low functioning gb. I haven't had the severe pains since my gb was removed. However, I haven't been myself since either. I feel sick all the time. I always have nausea, abdominal discomfort, swollen, painful glands along my jaw line and groin area, and dry eyes. Some days are better than others. Sometimes I go weeks feeling extremely tired and then I will have a week or two feeling more like my "old" self. I become very frustrated because I will begin feeling better and then it all hits me again and I don't understand why. I also have other symptoms that come and go. Recently I have felt like I am not breathing like normal, almost like my lungs aren't getting enough air. Just today I began feeling like my chest area is congested even though it isn't. I have been to so many doctors and specialists and I have had tons of tests done. Usually, nothing significant shows up except my Sjogren's antibodies (SS-A and SS-B) are above 8, which I am told means I have Sjogren's. Other things have showed up, like slightly low wbc, hormone levels are a little off (I have never had regular periods), and low vit. D. I have also been told that I have IBS (I have constipation frequently too). I trust my doctors, but worry a lot because I went from being a healthy 25 year old to feeling sick everyday. Are my symptoms common? Is anyone else dealing with similar symptoms and if so how do you deal with them? Has anyone gone to Mayo Clinic for a second opinion? Thanks for any support you can provide me with! :)
Welcome and your in the right place for support. I'm 27 and recently diagnosed w RA and sjogrens. Are you on any meds for the sjs? As you'll discover, we have a wide range of symptoms so hopefully someone will chime in with more help than I can offer but just know your not alone.
Hi and welcome,
I'm sorry to hear you're having so many problems. Sjogren's manifests itself in so many different ways. Have you tried a short course of steroids to see if your symptoms improve? If that helps, you could try plaquenil which seems to help a lot of us. Keep us posted and be well!
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.
Hello. I am sorry you are so young dealing with this.If it wasn't for the "spoon theory " some of our healthy friends and family would not get our new normal. We all have felt lost at least once during our struggle to seek the answers as to why we are dry; sick; tired and hurting. It took years for some of us to get a diagnosis. Its nice we have a place to seek information and to talk to people who understand what we are going through.
EBEM - so sorry to hear that you are feeling so sick every day. It does sound like you may very possibly have sjogrens. Your multitude of symptoms bring me back to my days of "undiagnosed" illness...I was just diagnosed in january of this year and began taking plaquenil. I am just starting to feel like I have some "good" days.
I too had so many different symptoms that it took me switching drs twice before I finally found the third PCP who had the knowledge, vigilance, persistence and resources to send me to the specialists I needed to rule out many other issues. My last stop was a rheumatologist who did the autoimmune screen and found sjogrens. I must say at first I was relieved to have a diagnosis - validation that I was not "crazy" or a hypochondriac as I believe some had labeled me, but then reality set in and realized this is a life-long, chronic condition that has no cure. There are medications that can certainly help with many of the symptoms and make a person feel "more normal".
I live in the NE and so the best place for me, personally, was lahey clinic, I am too far from Mayo Clinic to go there, but I have faith in my drs to believe that at this point, I do not need a second opinion. But, everyone is different and if you feel like a second opinion would would you give you validation or make you feel more comfort, then you should have one.
You do not mention if anyone offered for you to try some medications or supplements or some type of alternative medicine to see if you could obtain some symptom relief or not, have you been offered this?
The one thing I found through my sjogrens journey (nightmare to me), was that I had to be my own advocate, I had to tell them that I was truly so very sick and needed something, anything to try. I also went a short burst of prednisone while starting the plaquenil to try to "calm" my immune system some. I do not recommend prednisone to anyone because I was super sensitive to it, however, I know many folks swear by it and state that it changed their lives for the better.
These are just a few suggestions or areas to research if you are interested in trying medications.
I wish you the best and am sending positive thoughts and prayers your way that you find some symptom relief SOON. No-one should have to suffer through this ordeal.
This forum is a great place to be to vent, share and ask questions. You will find great support here as well.
Wow! Thank you all for your incredible support! It's nice hearing from people that actually know what I am going through.
To answer some questions... I have tried many different medicines but nothing I have tried seems to help. I have not tried a course of steroids or Plaquenil. I don't have any joint pain (just neck pain on and off). I assumed I had to have joint pain to take those... now I am curious and will look into them. I am getting ready to begin a medicine to help with saliva production. I take a multivitamin, probiotic and something to help with my hormone imbalance.
Joe S., I am very curious about the alternative therapies you shared and will look into those some more. I am always cautious about what I put into my body and I like the idea of the natural approach. Honestly, I am at the point that I just want something to help.
Once again, thanks for all of your replies. I was having a rough day when I wrote my original post and it felt so good reading through your replies and links. Although I wish no one had to deal discomfort in any way, it is nice knowing that I'm not alone. Thanks!!
Oh... I also use Restasis and it really helps with the dry eyes!
Welcome to the board. I am sorry you have to be here to have to deal with this, but we do understand. I have experienced everything you said. Have you had your thyroid checked? Have you also been checked for lupus?
Many times when we develop one autoimmune disorder we have more that are eventually discovered, but not always.
Feel free to ask any questions.
susanep :)
With every medication or supplement always check for counter indications, side effects and interactions.
I have to disagree with Joe. Take them, see how you feel, and if something distressing happens, only then look up side effects. They are, by definition, rare, and you can actually induce the "side effects" if you look them up and worry about them. Look up the Nocebo effect.
Your pharmacist should be on top of any interactions, and even they don't necessarily happen. People allergic to sulfa drugs are not supposed to be able to Celebrex. My husband has no problem with it.
Sharon
Welcome to this amazing group. Im 29 diagnosed last year. You mentioned that sjogrens runs in your family. Are they taking meds/supplements that work for them? That would be my start.
Im in the middle I take supplements and plaquenil. I think a combination helps the best. My dryness has gotten worst but restasis helps a lot. I still have bad days and pretty good days. I still get the worst days as I call them but mainly Im in the middle of bad/good days.
Cindy
EVerything that you mentioned is something that is affected by the sjogrens. The gallbladder is affected by the sjogrens and it is very common to have liver and gallbladder issues. You should see a Gastrointestinal doc to check out these issues.
Any gland in the body that secretes can be affected by the Sjogrens. This includes all the salivary glands, the sweat glands, thyroid, liver and the mucus glands in the stomach and intestines. Nausea is often present with sjogrens and other autoimmune diseases. Gingersnap cookies also with 7-up is something that is good at settling the nausea. Also, Gastric reflux is often present in Sjogrens and most of us have to take medication for this.
Do not let your docs tell you that Sjogrens is just dry eyes and mouth, etc. The neurological system is often affected and balance issues and hearing can also be affected. The most important thing our docs can do for us is to treat the symptoms. Even if our blood work is negative we need to have our symptoms treated. THe first line of treatment that is now accepted by the medical community is the use of Plaquenil and Prednisone to help slow the autoimune attack on our body. If you doc doesn't think you need plaquenil then you need to find another doc who will use it. They have found that the sooner we get on this med the inflammatory attack on our body is slowed which helps us in the long run. Good luck .Irish
Again, thanks so much everyone. I have learned a lot from all of the replies! My various symptoms were beginning to make me wonder if what I have really is Sjogrens, but sounds like it is.
I have a family history of autoimmune issues, including Sjogrens, but it seems like everyone has different symptoms or is in remission.
I have a doctor's appointment in a few weeks and I will bring up what I have learned about different medications.
Thanks again! :)