Author Topic: 31 years old, male --- need help!  (Read 2391 times)

macio1981

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31 years old, male --- need help!
« on: October 04, 2012, 02:50:59 AM »
Hi all.

I am 31 and have been suffering with terrible dry eyes, skin, mouth and back ache for about 12 years. I take Theratears nutrition which is excellent and I have punctal plugs in all tear ducts. I suffer with very bad back ache and its quite debilitating. I have not been diagnosed with Sjogrens but my symptoms seem very similar. Only one caveat.....I took Accutane in 2000 which causes dryness and this may be the culprit. However, all the docs keep saying that the side effects would not last this long etc but I dont believe them to be honest, I know it's a powerful drug.

Any thoughts or advice much appreciated.

Richard x

Tivia

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Re: 31 years old, male --- need help!
« Reply #1 on: October 04, 2012, 11:26:31 AM »
Some times we will never know if it was one thing that set off an AI, or a combination of things that came together. Or just plain bad luck. I do know that warnings for retin A and its like cause dryness. I just found this out after getting sjs and researching stuff. For years they had me on retin A creams for skin problems, they put me on accutane first but I didnt tolorate it well.

But I think in my case its the fact that I already had 2 AI's, another one was eventual, and actually I am already testing positive for latent AI diabetes and poss PBC. AI's love a party, they invite all their friends. I think a lesson for us all is to consider what we put in/on our bodies, then reconsider. All too often we never even think anything of swallowing drugs and foods, using topicals that may cause us irreparable harm.

Joe S.

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Re: 31 years old, male --- need help!
« Reply #2 on: October 04, 2012, 02:18:00 PM »
macio1981,

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.
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

Dorisday

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Re: 31 years old, male --- need help!
« Reply #3 on: October 04, 2012, 04:25:33 PM »
did anyone here ever  use collagen or hyaluronic acyd fillers?

iraisin

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Re: 31 years old, male --- need help!
« Reply #4 on: October 04, 2012, 07:40:58 PM »
Macio,

What tests have they run and who's running them?

You may want to go to a rheumy for a consult - see what that doc says.

They still need to address the fatigue and back pain issues regardless of the dryness symptom. Sounds like they are using it as an excuse. Shop around.

Katybarstool

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Re: 31 years old, male --- need help!
« Reply #5 on: October 05, 2012, 01:44:28 PM »
Macio

My son took Roaccutane (we're in the UK) when he was 16 for severe acne. His health has never been the same since. He developed fibromyalgia and acrocyanosis. He's 30 this year and although he has a busy life, working and looking after his children, is health is finely balanced. Having said all that, his acne made him suicidal, so the drugs were a Godsend at the time.

I asked around about Roaccutane and health problems,  but could never get any confirmation that the drug could have damaged his health. Interestingly, in some ways, my health is similar to his, and I never took Roaccutane. It's a mystery.

Kathyx