New to the Forum

[Karen13]

Hi,

I am new, though have lurked a few times. I finally seem to have a moment to post. I was diagnosed with Sjogrens and Fybromyalgia last Sept after years of symptoms and begging to see a specialist (apparently stay at home moms are only depressed, and not suffering from other ailments... sorry if I sound bitter, really I am thankful to the young intern who told my Dr to send me finally). My bloodwork is also exactly on the line for lupus as well as some lupus symptoms so it has not been ruled out. I had Grave's about 11 years ago, and since childhood have suffered migraines, low blood pressure, low blood sugar, fatigue, irritable bowel, chronic tendonitis, sinus infections, dry and painful eyes, joint and muscle pain, etc. I have had several periods with minimal symptoms and always hope to get back there. I am on Plaquenil and began feeling noticeably better just after Christmas though I still have difficulty pacing myself to prevent flares and when I flare I get what I would describe as a body migraine, starts in my neck or back and just hurts so badly up to my head I cannot stand up. I cannot spend time in the sun or heat as it makes me worse and it is very hard to keep up with my 6 year old many days. Sometimes I cannot get dinner sorted and I feel awful that my husband works all day and must help out so much around the house. It is also very difficult socially as there are very few people willing to step down the pace and accept that I cannot do what others can. So I do what I do and all my energy goes to being the best I can for my son, and that means I rest a lot when I can, and keep up with my exercize as I find it helps a lot, and then I am out of energy for most anything else...

Hoping for more improvements and waiting for my next rhumy appointment in Aug. So frustrating as each doctor I see contradicts the next and it is hard to know if I am doing the right things...

Anyway I hope to be able to give and take support and knowledge with your group... and help to remember to look on the brighter side

[Joe S.]

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.

[Carolina]

Welcome, dearest Karen,


Each doctor contradicts the next!   Yes, that's the nature of this constellation of autoimmune conditions.....most are not well understood, nor well defined or differentiated.  A few are fairly clear to the medical profession, and almost none have cures, or straightforward treatments without serious side effects.

All that said, I've found that getting the right treatments and management techniques for your symptoms, and dealing with the daily ups and downs, flares and mysteries, are the keys to some sort of sanity in the long run.

Family, friends and doctors will 'understand' and 'support' to some extent, but this forum is the place to share, get answers, suggestions, support and understanding...... and a place to vent and find some humor occasionally.

Welcome, Karen!

Keep us posted.

Hugs

Elaine

[Gayle]

Welcome Karen,

I have not been diagnosed for so long and have learned so much from the wonderful people here, I am sure you will too. I have come to value the members here for their compassion as much as their knowledge. Keep lurking, ask what you need, vent if you need and smile. Nice to know we are not all alone.

Gayle

[WildThing]

Welcome to the forum!!!!!!!!!!! 

[MissyLouWho?]

Welcome Karen! 

[Meld256]

Hi Karen,
Welcome to our forum! 

Although I'm sorry you're dealing with these health issues it sounds as if you're doing all you can to manage as well as possible.  It can be hard to learn to pace ourselves (boy, do I know how that is!)

I hope you'll find lots of friendly people here, loads of information and support like no where else.  Please feel free to post and comment or ask anything at all.
Looking forward to hearing more from you!

Take care and again...welcome!
Melinda

[smallfry]

Hi Karen Welcome !!!!!

[Pisces24]

Have you thought about making some dishes ahead of time?     I've done that before and even partially made up helps a lot. Planning ahead on your good days does help.

It took me 6 years to get diagnosed with SJS so I can sympathize. When I finally got diagnosed, my ANA, SS-B and SS-A were sooooo high there was no doubt and I wondered why I wasn't seen before. Doctors are very frustrating and you will run into all kinds. I got diagnosed at a teaching / research hospital and would recommend those over any individual so called specialist.

PS: My rheumy does nothing for me. It was a immunologist who diagnosed and has helped me the most.

[Ark mom]

Hi Karen!  Welcome to our family.  I'm sort of new here, too, only recently diagnosed. 

One of my dinner tips for flare-ups is have a giant stack of paper plates and a stack of paper or plastic cups.  Makes cleanup easier.  An aside, sorry, my dear Earth Mother!

At least your husband helps around the house.  No matter how sick I am he will not help at all.  He says to stop making excuses and get it done.  I think I won the prize for the worst husband of the wives on this board.  Ha, ha, I have to be able to laugh about it or I will die inside. 

Please hang around.  You will make good friends!  Peace!

[CindyD]

HI there Karen!! IM new top this forum as well. Was diagnosed a few years back with Sjogrens and Fibro I was diagnosed about 15 years ago... I just joined this forum a couple days ago in hopes of finding people LIKE ME... I feel like iom going crazy..My house is a disaster area.. and I am SO TIRED all the time.. Maybe you are in the same boat? I HOPE NOT.. But wanted to welcome you even though Im newer than even you are ! LOL Im hoping to meet people on here that I can relate to and that can relate to me.. I hope to see you more