Hi Everyone!
I have not been officially dxd, but rheumy says I "may or may not" have Sjogren's. She says she is leaning towards Sjogren's but does not want to put diagnosis on me at such an early age(early 20's) without being totally sure.
I had a baby about 8 months ago and started being extremely fatigued after a couple months of starting to get my energy back after having the baby. Along with fatigue, I have been having passing joint & chest pain for several weeks(joint pain has been getting worse last couple weeks and it seems like my wrist or ankles are almost constantly hurting). I only really get dry mouth at night(which I don't think is super abnormal even without Sjogren's?) and any symptoms with my eyes have been mild and I've always attributed them to seasonal allergies. In spite of lack of dryness, I did have bloodwork come back SSB positive, so this is all quite confusing to me and to my doctors. I can live with the joint pain I have now, but more than anything I wish I could have my brain function and energy back! Rheumy said I can try Plaquenil to try & help with fatigue if I want, but it is totally up to me, so I am still thinking about that.
I have had bad problems with my teeth, especially lately, with two abcesses on a tooth with a previous root canal just last week and it seems like they find new cavities every time I get my teeth cleaned(often they are on the edge of an old filling, ugh!).
Over the last few days I have noticed a hard bump in my mouth up at the very top between my jaw & cheek, nearly at my cheek bone. It is hard as bone, but painful to the touch. I am going to see a dentist about it tomorrow, but I don't think it's an infection since I noticed it after I started antibiotics after the retreat on the root canal(it is also in a different part of my mouth so it is not soreness from the numbing shot).
I was wondering if any of you had experienced anything similar with the bump on the gums and if it might be Sjogren's related?
I am so new to all of this information and I worry that I am just being paranoid or imagining symptoms that aren't really there. Thanks for any insights or advice!
Rayla
Hi Rayla - welcome! ;D
First off, congratulations on the birth of your baby. Babies certainly keep you hopping, don't they?
I've always had teeth issues, which I had always thought was bad genes passed down from my parents. Then, when I got the Sjogrens dx, my teeth problems seemed to escalate due to the dryness and no saliva to wash away bacteria. I did everything I was suppose to do to take care of my teeth and it didn't seem to help.
It was my dentist office that suggested I be tested for Sjogrens as their instruments were sticking to my cheek and teeth during an exam.
I still think some of the infections I got in the roots of my teeth contributed to, if not caused, my Sjogren's to show it's ugly self. :( I do know how painful some of the mouth issues can be.
Good luck at your appointment tomorrow - please let us know what you find out.
There is a wealth of information found here on this site. If there is a particular subject you are looking for, if you put that word(s) in the search box to the top right of this page it will take you to previous threads about that subject. If you can't find what you're looking for, by all means, start a thread of your own.
There are several real good books about Sjogrens that help explain what to expect, etc. I have five that I refer to often. You can find some of them listed here: http://www.sjogrensworld.org/books.htm
I hope you find this forum helpful to you in your Sjogrens journey. Please know that when you come here, we "get it". We understand the fatigue, aches and pains and wondering, "is this Sjogrens related or just part of life?".
Bucky
Please get your mouth checked out.
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.
Sjogren's – 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. Don't 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 Sjogren's 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 S's of Sjogrens.
Thanks for your replies! Yes this kid certainly keeps me busy, only 8 months and he thinks he wants to walk already! Even though he is busy he is such a good sweet kid and he spoils me with lots of laughter and big slobbery kisses. =)
I asked my dentist about the lump and he says he can feel it there, but he doesn't think it is Sjogren's related since there aren't any major or minor salivary glands in that area. Nothing looked bad on X-rays and no sign of infection so basically he said if it gets worse come back and maybe we can tell something then(it's starting to feel better so I'm not worried about it). He did find 5 cavities! :o Fortunately we are switching to better dental insurance soon so it won't be quite as expensive to fix.
It's nice talking to all of you! I'm reading up on Plaquenil in the forums so I can make a decision if symptoms become less manageable, but for the mild level most everything is at now I'm going to try improving diet and exercise for now. I'm at a healthy weight now, but eating less processed foods probably won't hurt anything. ;)
Hi Rayla,
Let me also welcome you to the SJS World and family! I hate to meet you this way but sure am glad that you've found us! Please do look around as you'll find an amazing place with scads of information and tons of wonderful members!
I can't speak of the lump in your gums, and glad to hear that the dentist isn't too concerned; always a good thing! Sorry to hear about the cavities though, most of us sure can sympathize!
Congrats on bambino! Good to hear that he's up and running a mile a minute! Nice to hear that he's trying to walk already, don't be surprised that he just might get up on day soon and take off...then the fun really begins (kidlet got up and took off the day she turned nine months old and hasn't stopped yet; she's in her late 20's). :D
Again, welcome!
Patze
Welcome, I think you should see a doctor about that lump, hard lumps are nothing to fool around with. I dont know if you ever smoked either and not to scare you but oral cancer can present like that. Good thing you are going to your dentist to have him look, mention it to your doctor too. Its prob nothing serious but never put off checking out lumps. Let us know how it goes.