New here and to Sjogrens

[jazzykin]

I am so happy to have found this board. I am new to sjogrens and there are not as much support as I thought there would be. I have been feeling severely sick for two years however looking back i have had symptoms since I was 22 (just not this severe). I have been under an enormous amount of stress the past two years; which I feel have made my symptoms worse. Since I never really knew how other people felt I thought that the burning of the eyes, muscle soreness and brain fog were normal that I was just tired or depressed like doctors told me. After seeing 20 Dr's a rheumatologist finally diagnosed me after seeing me twice (August 28th, 2012) . So many doctors had told me I was depressed that I actually attributed all my symptoms to depression. I had become the human guinea pig and I myself thought I was going crazy because the doctors made me feel like I was a nut. Thank goodness I finally know I was not crazy after all. I do however think I have other things going on internally because I have issues with my liver, kidney, bowel, etc. I have had cat scans and MRI's because I had blood in my urine and they found lesions on my kidneys. I also have an enlarged liver (I do not drink nor have hep) and abnormal hemorrhaging (when its that time of the month I have my cycle 10-14 days, sorry TMI). My pulmonary issues that I have had for many years and had several tests which doctors told me nothing was wrong are still one of my biggest complaints. Honestly I can go on and on but was wondering if anyone has had similar experiences that can point me in the right direction. My uncle has lupus (recently diagnosed) so I am scared that will be my next syndrome.

Any how not to get off topic but since I am new to this journey and am scared to take drugs, I have found a naturopath doctor who says she can rid me of my autoimmune disorders. I spent a $2,000.00 last Friday on blood work (including food allergies), some supplements and her visit. That was the cost of just one visit so I am hoping that will not be my weekly cost or I will not be able to afford a cure. She does the Gerson therapy with high doses of intravenous Vitamin C, chelation, a juicing diet, etc. Has anyone done anything similar to this? I know I may have jumped the gun but I am so scared that my symptoms will get worse that out of desperation I jumped on board because I have young children who need me and the past two years I have been very ill.

Any how sorry if I rambled or if I if none of that made sense (brain fog, blah) but any guidance will be very much appreciated. 

Jazzy

[Iwantmylifeback]

Welcome!  I just recently found the site as well. I was DX in 1980.  Probably a blessing that I donated blood and was sent to a Heme and Rheumy because of my irregular blood testing... or I mite be feeling the same way you have CRAZY.

I have a sister that is 10 years older than I am and she was DX much later than I was.  She has much the same involvement as you do and is at a plateau. No better no worse.  We both have just figured out how to live with SjS.

That being said, I am not too sure of the program you are paying for, not heard of it before.  What area are you from??  We all do things a bit differently from each other, but, we are all affected differently.  It's the nature of Sjs.  I have not heard of IV vitamin C.  I know if you injest too much you will filter it out in your kidneys and pee it all out, not sure how that works IV.  Be sure to let us know.  Not familiar with Chileation.

I tried many of the drugs others take here.  They work for some but not for others.  I am that others.  I decided I am tired of feeling cruddy and have just recently made changes that seem to be working for me.  I know stress is a BIG factor in the way we feel, and I think that goes for all autoimmune people.  I can only share what is working for me..and ironically it does not work for my sister.

I have found it interesting here to see at the bottom of the posts what others are taking (just figured out you can enter it in your profile so it posts each time).  Many of the meds are similar, a lot of the herbs are similar.  Many are playing with their diets to see what feels better and what does not.  I am just sorry so many are suffering with this beast and are having to travel this journey. I have done much research and am slowly trying to include some of the herbs others are taking.  Many I was already on.  I do have to say I feel better today than I have felt in a very long time.  My husband even mentioned it to me today.  I have not been overboard in pain and I feel alert and energetic today.  So something I am doing is making a difference.

These are my changes to date: 
I quit taking Plaquenil. for me it was making me more and more miserable and I did give it a good trial. 
I have eleminated processed foods, sugars, artificial sweeteners, dairy and most grains from my diet.  My stomach and bowels feel much better.  No more bloating.  In the process I am down 5 lbs this week nothing different in exercise but I am eating more because I actually almost feel hungry, which I have not for years!  I always feel full.
I have added these herbs so far..CoQ10, and Tumeric, to already taking Fish Oil,  B12, D3,and K. I make a syrup from fresh Gensing to settle my stomach and add it to tea.  I had been tested for vitamin defficiencies and that is why I am taking those.  I am also anemic and take an iron supplement.  The next will be Acetyl-l-carnitin, biotin, and R lipoic acid.

Hope this is helpful.  You are at the beginning of a journey and I am glad we have others here to sound off with...You are not alone

[Gayle]

Hi Jazzy,
Welcome, I am glad you found this site and us. You can learn a lot, ask questions, vent, laugh and share. There are many wonderful people here who will be able to relate to so much of what you are going through.

I initially presented when I was 26 with multi organ failure and they said I had lupus. However I did not and not until last year, 27 yrs later, did they figure out what I had. I also had hemorrhaging during my periods to the point that when I was 21, I had to have a hysterectomy. (TMI, I know) so you are not alone and it does not mean that you have more. You need a good Rheummy who will work with you, did they start you on meds? I started plaquenil and it seemed like it did very little... It was only this summer when I went into what is known as a flare, due to extreme stress... and the 'flare' was not nearly as bad as I had previously had. So I can only assume the meds made it better. I do not know about chelation, etc... I do understand even from a naturopath and a homeopathic dr that there is NO cure... only relief in symptoms, slowing of the progress... etc. Please be careful. that is a lot of money!

Good luck! Read a lot... use the search button top right, to look up previously commented on ideas.
Read, read, read, breath, relax...

Gayle

[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.

[lynnmarie219]

Hi Jazzy and welcome to Sjogrens World!

I'm glad that you found us and hope that you find some information and answers that you need along with the support and friendship that many of us have also found here!

First things first...you are not crazy! You have quite a few illnesses and issues going on within your body at the same time. These are legitimate medical concerns so please don't sell yourself short. 

And secondly...the sjogrens diagnosis is very new to you...it takes time to find out what type of path you are going to take to help your body get through this. It is a personal decision  as to what you choose to do and it takes time to get things figured out. Take the time you need to figure out what is right for you...and try to approach things slowly and with an open mind so as not to close out any options.

Another thing that comes to mind is that depression can also be a real part of this....when we are not feeling well or in pain a lot...it greatly affects our mood and there are many of us here who have been affected by depression. Its not a bad thing, but it is real ....the important thing is to be able to recognize it and deal with it.

Please read all you can here and ask any questions that come up...someone is always around to offer help!

[slccom]

Hi, Jazzy! Ditto on sorry/glad you found us. I have had Sjogren's all my life, and didn't have real significant diagnostic symptoms until I hit about 50 when my eyes went really dry. Luckily, we live in a world of true miracles, and we have medications that are helpful in preventing the really crippling effects of it and the related autoimmune diseases that love to come along for the ride.

Please, please, please keep in mind that the people on this board, for the most part, are much more ill than you are likely to ever be. I believe that most people with Sjogren's are never diagnosed because either they can't find someone competent or don't have the "right" blood results. Also because they never get sick enough that even a doctor can tell!

Besides tracking your symptoms, you should also track the medications and supplements that you take, their doses and how effective they are. Set up a spreadsheet or something, and after you make an entry, e-mail it to yourself (assuming that you keep sent e-mails) in case your hard drive crashes. Do the same with diet changes.

Since you are having symptoms now, I would ask about getting on Plaquinel ASAP. It is really cheap in the generic form. Always tell your dentist that you have Sjogren's. The eye drops you use must not contain benzalkonium chloride as a preservative, because it will damage your cornea. You need to have an ophthalmologist, too. Tell her/him you'll be on plaquinel and you need a baseline visual field test. (Actually, if they don't tell YOU to get a baseline visual field test, thank him/her politely, leave and find someone else.)

Beware of the nocebo effect. This is where people who are given placebos but told to expect certain side effects, and they then develop those side effects. My advice is to take the medication, take it with optimism, and if something that distresses you develops, only then look up the side effects. The human mind is an amazing thing, and the power of suggestion even more so. Even worse, many people are more afraid of the medications than they are the disease. This is very dangerous to your long term health and functioning.

Sjogren's is a real trickster disease. There are many different symptoms, and as far as I can tell, no two people with it have exactly the same symptoms. That said, there is no reason why you can't have another illness as well, including other autoimmune diseases. They do like to travel in packs! And that said, there is no reason why you can't have some other illness that isn't autoimmune. When you go to the doctor in the future, ask ?If I didn't have (autoimmune disease/s), what diagnosis would you consider? How can we rule that out?? When the mind heads down a diagnostic track, it is good to derail it with this type of question.

I would take the lab results to a rheumatologist and run as fast as I can from the person who charged you $2,000. Chelation is a very serious procedure that can have really bad effects. It is only good for removing serious heavy metal poisons. To say that she will do this even before seeing if you have extensive heavy metals in your system is irresponsible, and the other things are pretty scary as well. http://en.wikipedia.org/wiki/Chelation_therapy/ I don't see any recommendations of IV Vitamin C in the peer-reviewed literature for autoimmune disease, although it has been tested for cancer and found to be effective in a very small population. I also don't see any good reasons to not give it a try, as it seems to be pretty benign. However, the biggest red flag is that she promised a "cure."

I understand that you are feeling desperate. However, we can all learn to live with what we need to live with. Various people here have tried various diets; for some it has been effective in reducing their symptoms, not so for others. Different medications have been helpful for some, not for others. You need to give them an honest try. Plaquinel has been helpful for me, as have antidepressants, anti-inflammatories, and when needed, antibiotics. I do well with almost all meds. Being afraid to try medications is unreasonable. Nobody is promising any miracles, just ways to at least feel somewhat in control of their illness. Perhaps you can even BE somewhat in control, who knows? And research is continuing, and we are all living better and longer. Someday there might be an actual cure. We are all hoping!

Welcome, sorry you need us, and we all look forward to answering your questions and your answering ours. Don't forget the Social Hour for some fun!
Sharon

[jazzykin]

Thanks everyone. I guess I am so new to this that I have no clue where to start. I get my (10 million/$2,000.00) lab results on Friday which I will take to my rheumatologist. I have also checked out several books regarding autoimmune disorders and it seems that there is not a lot of information for sjogrens like other autoimmune diseases so I am thankful to have found this site as I really appreciate all of your kind words and advice. 

[Iwantmylifeback]

  Keep us updated when you figure it all out (labs)