I've known I've had Sjogren's for several years now. I've always been sensitive to light and my eye doctor was the first to suggest I get tested for it because she noticed my eyes were dry. Since I wear sunglasses all the time when I'm outside I never really noticed dry eyes. I've always had dry skin. So sometimes I get tired for no particular reason or have pain in my joints. I'm on supplements for low testosterone and thyroid and those are always being constantly readjusted.
I have no idea if my migraines/headaches I have are connected to the Sjogren's. Dr. says no but I've been to enough doctors that I don't always believe them. Life wouldn't be so bad without the migraines and headaches. Being dyslexic on top of that doesn't help. I need a dictation program to write something like this. Aside from the migraines the only other unknown is these weird twitches I have. The doctor gave me a name for them which is really long and complicated something my dictation program just won't recognize. They can't do a thing for them apparently. I have asked several neurologists and they just shrugged.
The consequence of all this is I can't exactly hold down a job or even live on my own
Glad you decided to post here and hope that it helps you link up with other young men coping with Sjogren's.
Hi Eric555.
Glad you found this site. I have frequent headaches and think that they are indeed related to Sjogren's. They vary in intensity and are not typically migraine strength..but sometimes are. But I also have had a couple of spine surgeries..that also had migraines/headaches as a symptom...so it is often difficult to determine which thing is caused by which thing. Are you using Dragon Speak? In my prior life, I was a Special Education Advocate helping kids with LD get services in school districts. There are some excellent programs and aids to help LD issues.
Unfortunately, there are always a lot of symptoms that come with this territory. If you have spent any time here you have probably noticed that there are docs who are not helpful and do not understand the complexity of Sjogren's. You have to keep trying until you find the right doc who is willing to take the time to put it all together...or at the very least a compassionate doctor in whichever specialty you require who will help find the answers & treatment that work best for you.
Hopefully, you can get to a place where everything can be managed much more effectively, which will allow you to work or live on your own.
Be a regular on the site and keep researching and learning. Understanding some of these manifestations will help you be a good advocate for yourself.
Take Care.
SjoDry :)
Yeah I use Dragon natural speaking. I had back surgery when I was 18 but migraines were long before that. The doctors just manage the symptoms. Avoid too much light avoid too much sound and avoid strong smells. Botox helps but only so much.
Welcome Eric555. I used the meditation listed to help manage my migraines.
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.
Eric
My young son was diagnosed with migraines and it was very hard for me to see him in pain. We were blessed to discover the cause right away by keeping track of what he ate through a journal and now use diet to control them. He no longer can eat nitrates and we limit his caffeine, and peanut butter intake. Getting over heated and lack of sleep also can play a part in his migraines. I googled national headache foundation, headache sufferers diet and found a list of possible triggers. Hopefully this will help. I know when he has one now, if he doesn't go straight to bed, he will get sick to his stomach and cry with pain.
My opinion is that migraines have something to do with how your gut absorbs nutrients but I have no proof. Don't give up, keep looking for a cause.
Winnie