Author Topic: Hello, new to the site.  (Read 2492 times)

xANTHONYx

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Hello, new to the site.
« on: June 01, 2012, 07:07:32 PM »
Hello Everyone,

I have just decided to join this site after being diagnosed with Sjogren's. I suppose my demographic is a bit unusual in here as I am a 24 year old male. From my understanding about 90% of the people diagnosed with this are middle aged women.

I lost some weight unexpectedly which sent me to the doctor. When I complained of sore joints, dry eyes, and often getting choked when I eat, she tested me for this after ruling out the common culprits. She put me on Plaquenil and so far nothing has changed but to be honest I have only been on it for three weeks and the symptoms are sort of mild and vague in the first place so its probably not going to be a revolutionary difference.

Gayle

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Re: Hello, new to the site.
« Reply #1 on: June 01, 2012, 07:38:26 PM »
Hi Anthony,
Welcome though I am sorry you need to! You will find there is a ton of great information here and wonderful people who share their experience and knowledge. You can share, vent and know that we understand. It is less common for men to have Sjogrens but you will find quite a few here. Good luck! I am glad to hear that your symptoms are mild and hope it stays that way. The medicine can take up to 6 months to kick in so your right, 3 weeks is not much time. Welcome again! Read all you can so you are well educated.
Gayle

lynnmarie219

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Re: Hello, new to the site.
« Reply #2 on: June 01, 2012, 08:22:50 PM »
Hi Anthony and welcome to Sjogrens World!

Sounds like you were very lucky to have a good doctor listen to you and recognize your symptoms and then treat you with plaquenil right away....she is a keeper for sure!

Glad you found us here...take your time to use the search feature in the upper right hand corner to look up things you would like to know and if you still cant find something.....just ask....lots of nice people here who are always willing to help out and share experiences.

Meld256

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Re: Hello, new to the site.
« Reply #3 on: June 02, 2012, 12:25:44 AM »
Hello, Anthony

Welcome to Sjogren's World!  ;)

 I'm sorry you've needed to find us because of your diagnosis, but you've come to the right place for information, support and friendship.  And although you're right about the majority of us being female and "over a certain age" :)  there are quite a few men here on the boards and several young men like yourself.
As said, Plaquenil can take some time before you may see any difference, but for some of us it's been a huge positive change.  I hope the same happens for you.

Please look around the boards and then ask anything you like, or jump in and comment anywhere. You'll find we're a friendly crowd.  We look forward to hearing more from you, and again...
Welcome  :D ;D

Melinda

Joe S.

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Re: Hello, new to the site.
« Reply #4 on: June 02, 2012, 06:11:00 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.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Patze

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Re: Hello, new to the site.
« Reply #5 on: June 02, 2012, 05:50:32 PM »
Hi Anthony,

Let me also welcome you to the SJS World and family! 

I hope that you find this board as help and friendly as I have all these years later.



Patze
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Sero Negative Queen

gold55

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Re: Hello, new to the site.
« Reply #6 on: June 07, 2012, 06:33:08 AM »
Hi Anthony!
Are you in California, ARizona or Florida?  It sounds from your sunburning experience that you have to be in one of these states!  I'm in desert dry AZ......it's great for weather and no natural disasters but it's dry!!!  I keep my humidifiers close at all times!  Welcome to the forum!  Jill
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

Sleepy In Seattle

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Re: Hello, new to the site.
« Reply #7 on: June 07, 2012, 08:31:31 AM »
Welcome to the hen house, cowboy... :P ;D

Sorry you have to deal with this.

I am one of the many middle-aged women around here, but my diagnosis also came as a surprise. I had vague symptoms and so on for a couple years, and bounced around to docs until I found my Rheumy - he took a long history, did a bunch of tests and scans, and the walked in and told me I had Lupus, Sjogren's (which I had never heard of), APS (which I knew), and Raynaud's. These things often run in packs. I was floored.

Anyway - don't give up on the Plaquenil. It works well for a lot of people, and side effects tend to lessen over time (if you have any). But don't be surprised if you never see any HUGE change....you may just gradually feel better - so slowly you don't really notice the change. It can take up to 6 months to happen, so stick with it. By the holidays, you may find you just generally have more energy and less achiness. The dryness, not so much - I think Plaquenil doesn't work as well for that aspect of the disease, but there are other things that do, so be sure to ask your doc if you need help with tears/saliva.

Anyway - welcome. Ignore all the talk about middle-aged-women problems, and you'll find a ton of great info that applies to you here.  8)
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

xANTHONYx

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Re: Hello, new to the site.
« Reply #8 on: June 07, 2012, 11:15:58 AM »
Hi Anthony!
Are you in California, ARizona or Florida?  It sounds from your sunburning experience that you have to be in one of these states!  I'm in desert dry AZ......it's great for weather and no natural disasters but it's dry!!!  I keep my humidifiers close at all times!  Welcome to the forum!  Jill

None of the above...err below. I am from the Midwest where a natural disaster like tornados, blizzards, icestorms, droughts, or the occasional earthquake occur at least once a year. But darn-it, I like it here...lol. No where else in the world do you get typically 100 degree beach weather and a white christmas in the same year. I find humor in the fact that sometimes the canadian geese declare this area south and sometimes north, you never know which way they are headed.

Thanks for the encouragement everyone.


WildThing

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Re: Hello, new to the site.
« Reply #9 on: June 11, 2012, 09:06:09 AM »
Hi Anthony,  nice to see you taking initiative already and starting up games on the social board!

Ark mom

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Re: Hello, new to the site.
« Reply #10 on: June 11, 2012, 09:25:56 PM »
Hey Anthony, welcome to the board.  I'm not middle-aged, yet!!!  Only 39!  LOL.

Actually, I SHOULD have been diagnosed when I was your age because I had it then, too, just no one knew what the heck was wrong with me.  Getting primary care through a university campus health program isn't one of my fondest memories....

Anyway, gender and age aside, we are an amazingly knowledgeable group that is very helpful.  I most certainly learned most everything about this disorder on this board, as opposed to any doctor or other online source.  We are here for you!  I have never been afraid to ask or say anything here.  I feel confident that here no one will chide me or judge me.  Good to meet you!


41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine

Breesy

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Re: Hello, new to the site.
« Reply #11 on: July 11, 2012, 11:13:43 PM »
Hi Anthony!
Are you in California, ARizona or Florida?  It sounds from your sunburning experience that you have to be in one of these states!  I'm in desert dry AZ......it's great for weather and no natural disasters but it's dry!!!  I keep my humidifiers close at all times!  Welcome to the forum!  Jill

Jill- I'm from AZ! Southern AZ to be specific!

And Anthony- I was 24 when I was diagnosed, and turn 27 tomorrow. Although, I'm not a guy. :) I do believe being younger with an AI issue has its own sets of challenges. Most of our peers have no clue how to relate. And as my eye doctor said today: you're young, so you have a long way to go with this illness.

Fab.

:/
Erin