Help!

[MrsAllen76]

Hello all,

I really admire you all and think some of your stories on here and shared experiences are amazing.

I need some help badly! I was diagnosed in 2008 as hypothyroid and I take Thyroxine for this. Then in late 2008 I had a serious car accident and since then I have been diagnosed with Fibromyalgia as I started getting exhausted and really annoying body twitches all over my body.  Apparently I had all the pain points required for fibro.  MS was ruled out as I had a brain scan which showed no lesions on my brain. Anyway, cut a long story short, I have recently been told that I have type 2 diabetes and Polycystic Ovary Syndrome as I put on quite a lot of weight after the accident and me and my husband have unsuccessfully tried to get pregnant.  My periods are getting further apart and I have quite thick and embarrassing hairs on my chin!!

Anyhow, my reason for being here is that I think I may not have fibro.  I think it may be sjogrens.  The reason being is that I have always been a very thirsty person and my mouth gets so dry, but in recent years, my mouth gets stuck together its so dry. It feels like I am spitting feathers! I have to make sure I carry a bottle of water with me everywhere! I get strange itching on my hands and feet and they itch so bad I rip the skin off, then it just goes away.  My eyes get so dry sometimes they sting and it hurts to open them. I used to have terrible problems with my eyes as a child in that I would wake up and they would be stuck together! I have become incredibly dry down below and I have never had problems there before. I have ALWAYS got thrush! I get awful split sores at the sides of my mouth all the time.  I also suffer bouts of really painful lie bumps and ulcers on my tongue.  I get diarrhea for no reason whatsoever. I have tried eliminating some foods and there's no rhyme or reason to it.  I get tonsillitis all the time and even when I don't have a sore throat, it hurts to swallow. I get strange pains in my throat ( like a burning sensation) and in the right side of my chest ( I have always been told this is the fibro or tietze's syndrome, but I wonder if my glands are swollen).  I also get pains in my armpits like swollen glands. I get bizarre pains and swelling in my arms and fingers. And the worst thing for me is sweating. I can be doing nothing and I sweat on my head, neck and face like I have had a bucket of water tipped over me. It's so embarrassing, I avoid social situations as much as possible.

I feel like the doctors don't listen. They just think I am fat and lazy and sit around eating sweets and chocolate all day and that is far from true. They seem to blame everything on the diabetes, but my blood sugar on diagnoses was only 7.4! I don't know what to do. I could use some of your opinions and experiences so I can go and talk to the doctor and try to be firm with them. I just want my life back. I hate being ill all the time as its not fair on my husband. Any advice or words of wisdom are hugely appreciated!! 

[Joe S.]

Welcome MrsAllen76, AI diseases like to bring their friends to the party. You could have fibro and Sjogren's. Of course the dry mouth could be uncontrolled diabetes. Here is my standard welcome with good tips no matter what you have.

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.

[A66eyroad]

Welcome!

You'll learn so much on this forum! Be sure to utilize the search engine on the top right -- plug in any key word and you'll find a wealth of information.

If you can't find what you're looking for, feel free to ask.  Often you'll have just the answer someone needs, so feel free to post.

[MrsAllen76]

Thank you both so much, I will post often! I have decided to see a rheumatologist and get myself sorted, but thank you both for the encouragement! Xxx