Hi everyone,
This is my first ever post so please excuse my lack of knowledge...
A little about me- I'm 20, from England, a real girly girl, studying sport and business at university and had SJS for just a little over 2 years.
The last 2 years I've refused to accept there was anything wrong and tried to carry on as normal as possible, however after spending the last 4 days in bed with severe fatigue and swollen panda eyes I think it's finally time to come to terms with the illness!
Any tips on how to deal with all this would be much welcomed.
Hope every ones having a better day than I am :)
While I am glad that you found us, I do not like it than 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.
hi Giggles, I am new to this forum also and dealing with symptoms that really started to interfere with my life about 4 years ago. I relate to your post. Sometimes I feel like I'm having a few good days and I start carrying on in a "normal" fashion and then without a doubt I'm struck down by the reminder of the always ensuing horrible symptoms. My eyes are always a give away as well and the nasty fatigue and necessary recuperation of behaving as if I can do whatever I want whenever I want wherever I want. When I get plenty of rest, do what I have to do to sleep, heat healthfully and generally stay on top of modifying my lifestyle, I do pretty well. I have to say rest and sleep and good nutrition are key for me. I still work full time but now that is beginning to be a bit much, luckily I have a very understanding boss. I am also a rebel at heart and I will still every once in a while just say screw this crap and then well see above, it's back to rest and recuperation. At may ripe old age of 50 I am really starting to get into the pampering me thing, and use my age instead of my illness to justify it though really we need no justification at any age. I have also had to let go of the people who just don't get it or care and still want you to do what they want you to do, which is impossible under our circumstances --this includes a very close friend and a few family members. It was hard to detach from them but it has actually made a huge difference in my stress level. You are young and being proactive about what you can do to maintain and still enjoy life as much as possible and that is great. Feel free to adopt my new motto: Pamper me first and the rest will follow :-D
Thank you for your replies
Joe- Alternative therapy is definitely something I'll look into
Dee- Your advice was so amazingly kind and ironically made me shed a tear ;D I'm glad you've found a way of managing reasonably well, it gives me hope for the future. I can also understand the need to let go of people who don't get it, unfortunately my mum is one of those who seem's to think sjogrens isn't serious and that I should just get on with it.. But she's the one person I don't want to lose.
Definitely going to follow in your footsteps by eating healthier and getting more rest and the pampering sounds great, can't wait. Trying to stay positive for now just some days it seems impossible.
Hi Giggles
Welcome from me too - I'm a tyke from West Yorkshire. I'm 55 now, but have probably had SJS since childhood. However, I've had a good quality of life for most of that time, and hopefully, you will too.
There are many knowledgeble, caring people on this forum, and they will be here for you.
Keep in touch.
Kathyx
Welcome to the Group! A lot of us really had Sjogrens for quite awhile. We just attributed the symptoms we had to something else. I guess when it gets bad or bothersome we get it checked out.
Mine was my blood #s were wacky and my gp was determined to find out why. Well several so called specialists and 6 years later I finally got the diagnosis of Sjogrens at a teaching & research hospital here in Iowa.
I hope you are able to get positively diagnosed. An immunologist diagnosed me but we have several people on the boards who were diagnosed by other type specialists. Have you seen an optamologist for your eyes? I would persue getting a positive diagnosis and then you can get something to help you.
Good Luck!
Welcome Giggles,
I like your name- makes me smile. Something we all need more of.
I, too, have had many symptoms since my early 20's; but wasn't diagnosed until 2 1/2 years ago. (I'm now 64). Fortunately, I was able to see a Sjogrens specialist, and he has helped me greatly on how to manage my symptoms and change medicines when necessary. My Eye doctor has also been very understanding and vigilant in my treatments.
I decided that knowing what I had was just the first step, now I had to listen to the doctors, and do what i could to get through each day. My family is very supportive--they saw how miserable i was-- and now they see a better " me". I am by no means back to normal, but I am learning how to manage each day.
You can search for any thing in the upper right hand corner, There is a wealth of information available.
Please feel free to ask questions. We are always here to lend a "listening ear".
Take one day at a time, rest when you can, watch your diet. and don't be afraid to share with family and friends what you are learning about Sjogrens. Knowledge is so important.