Author Topic: newbie  (Read 1620 times)

Lewisanne

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newbie
« on: September 16, 2012, 04:43:54 PM »
Hi!
I was diagnosed with Sjogrens just this past week, after many years of various complaints to numerous doctors. My symptoms have manifested as severe polyneuropathy along with some less worrisome problems. My quality of life has changed dramatically over the last two years and I am just beginning to grapple with the changes in my life. My question right now is the prescription my neurologist gave me Friday for "methotrexate". The side effects listed are downright scary and I am interested in knowing if others are taking this drug and has it shown to be helpful. I want to get better, but wow......

Joe S.

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Re: newbie
« Reply #1 on: September 16, 2012, 05:33:41 PM »
Try it. If you experience a side effect, consider stopping it.

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

Byn

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Re: newbie
« Reply #2 on: September 16, 2012, 06:51:12 PM »
Hi Lewisanne.
I'm new too.... there is a LOT of helpful information to found on this board.
I have Undifferenciated Connective Tissue Disease (they know I have it, just not sure which ones).  We are pretty certain I have Lupus and Sjogrens.  I was also diagnosed with Fibromyalgia 20 years ago.  I have recently started taking Plaquenil.  If it doesn't help, methotrexate is next on the list.  So I am of no help with it..... I do hope the methotrexate helps .... and welcome to the forum.

Bucky

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Re: newbie
« Reply #3 on: September 16, 2012, 07:30:29 PM »
Hi Lewisanne - welcome.

Sorry, i don't anything about Methotrexate either, as I use Plaquenil - but, there are several members here on the forum that do use it.  Perhaps they will be along to answer you.

If there are specific topics you are interested in, if you put that key word(s) in the search box to the top right of this page, it will take you to previous threads about that topic.

It can be overwhelming when you get your Sjogren's diagnose, some strange disease you've never even heard of.  Many times, people find they have had subtle symptoms for quite a while and never really considered it strange.  Then, after diagnose, the pieces start to fall into place.

It helps if you keep a symptom journal of some sort, so you can track the coming and going of your symptoms.  This will also help your doctors see if there is any kind of pattern.  I know for myself, I can't remember if it was last week, two weeks ago or a month ago that a symptom started.

I hope you find this forum helpful to you on your Sjogren's journey.  There is a wealth of information here and people from literally all over the world who are dealing with Sjogren's too.  When you come here, know we "get it".   ;)

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

Lewisanne

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Re: newbie
« Reply #4 on: September 17, 2012, 09:05:45 AM »
Thank all of you - I am so glad I found this site. As you know, there isn't a lot of information out there. I was diagnosed with celiac disease in 1997 and had good results with the gluten free diet at first, but in the last few years everything I eat seems to give me problems. I was dumbfounded with this diagnosis of sjogrens, but found out that it is common among celiac patients. I am fighting depression and appreciate the suggestion of meditation. I hate taking pills but find that I now may have to accept the help of modern drugs just to get through the rest of my life. I am trying to just be thankful that there are such medications.....

lynnmarie219

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Re: newbie
« Reply #5 on: September 17, 2012, 06:40:47 PM »
Hi Lewisanne,

Just wanted to add my welcome to you...I hope you find this site informative and supportive! There are many kind and caring people who come here and help out in whatever way they can!


Gayle

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Re: newbie
« Reply #6 on: September 17, 2012, 06:59:14 PM »
Hi Lewisanne,

I too am on Plaquenil so I can't answer anything about your meds. Meditation will help so much! It helps, yoga helps, try to stay active, listen to your body, rest as needed. Remember, you define what your life is and you have so much control. Depression is common, normal, find a good way to deal with it. You have found this site and it will be a huge support for you, you will laugh, learn and find just how strong you are. Use the search button, top right, to look up lots of topics, including your medicines. Read a lot, take your time, relax and breath.... deep breaths... you will be fine!
Hugs,

Gayle