New...glad I found this site!!!

[mnslewis]

I'm so glad that I found this site today, I have already read alot of helpful information. I have a preliminary diagnosis of Sjogrens from my neurologist but all of my blood tests were inconclusive. I have all of the symptoms and in the last 6 months have developed more of the symptoms. I have yet to see a rheumatologist because it is a 3 month wait here at least. I have an appt on Aug 9th.

I have ups and downs, I don't sleep well. My neurologist has me on savella for pain but it's not working and makes me sweat like I've never sweated before. I'm on Effexor for depression and ibuprofen for pain. Now the last few days I have developed a cough....it wakes me up at night and I gag in the morning trying to cough up junk.  I've found that I had better have something to drink with me at every moment or I'm in trouble.

I'm learning alot, trying not to get down, I'm a normally active person and I don't seem to be able to function like I used to. I miss wrestling with my 2 boys and horseback riding.
Thank you for this site and all the helpful information. I pray you all will be "well"

[Bucky]

Hi mnslewis - welcome!   

I have yet to see a rheumatologist because it is a 3 month wait here at least. I have an appt on Aug 9th.

A 3-month wait to see a rheumy is quite the "norm" (some have to wait even longer).  I don't know, there must be a shortage of them or something - all I know is it takes a very long time to get in to see one for new patients.

As you continue to look around the site, I'm sure you will find stories that sound familiar to you.  With that being said, don't feel that everything you read will happen to you.  It may, or it may not.  Sjogren's affects each of us differently - what affects me, might not affect you at all, and vice versa.

When your boys were little, I'm sure you carried a diaper bag around with all the supplies you would need for a little one.  Now, you will be adding extra "supplies" to your purse for yourself . . . eye drops, lotions, pills, and the ever present water bottle.     I never go anywhere without a water with me. 

Along the way, you will find new normals for yourself.  A few tips to give you right off the top - pace yourself, as stress is not our friend.  Yes, you will have to give up, or modify, some of the things you "used" to do . . . it's just part of having an autoimmune disease.  You'll figure out what your limitations are - usually by trial and error - but, you'll get there.

I hope you find this site helpful to you on your Sjogren's journey.  Remember, we're all in this together - which makes the road we travel a little easier to walk.

Bucky

[Gayle]

Hi Mnslewis~ Welcome!

Yes there does seem to be a shortage of Rheummy's, it is all over..

You will enjoy the people here I am sure. i have found them to be warm, friendly, empowering, supportive and on top of all that, smart and informative! A great place to be!
I too miss riding, I sold my horses long before they figured out what was wrong with me. I could not ride anymore without terrible pain for days afterward. I also sold my car, switching to an automatic as I would have to pull over off the road (to rest and cry) from the pain in my leg from using the clutch.
Then poof... I was better... well not really but when I stopped trying to do things that set my pain off, the pain resolved. Now... not so much... it doesn't care if I sit or do anything so I just do.
Have fun reading all you can and learning everything you can. Empowered, you will do better!
Gayle

[artistangie]

Mnslewis, Hi

Im a newbie too and yes i miss the old me and i think my family (people and dogs) do too...

big hugs.
angie

[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 mnslewis and welcome to Sjogrens World!

One suggestion that hit me when reading about your long wait for the rheumy appt would be to call them back and ask to be put on a cancellation list. That way if someone cancels their appt (and they do all the time) they will start calling people on their list to fill it asap. I have found on more than one occasion that this moved my appt date up significantly. Just a thought....

Read all you can here and don't hesitate to ask any questions...there is always someone around willing to help out in any way...great people here for sure!

[mnslewis]

I am on the cancellation list for my Rhuemy....Thank you for the wonderful replies, I have been doing alot of reading on this site and even though it's not a club I would have joined willingly lol...it's very nice to know that Im not alone in this, I think alot of times that is what makes me so depressed is that no one seems to understand, because I look the same as I did before....but I certainly dont act like I used to.

Does anyone have any suggestions for me before I see the Rheumy? I have never been to one, was just told recently that it's Sjogren's even though none of my blood tests showed it I have every symptom of it.
Does it help to have a "health" journal? I feel so different from day to day I never know when I wake up in the morning how Im going to feel that day....What's going to hurt today?
Thanks all!!!

[Joe S.]

Have a list of symptoms, and a list of questions. Bring an advocate with you and make sure they have reviewed your lists.

[quietdynamics]

I would take in a prescription report on Word and take it to the appt. (include OTC/supplements, etc) I have mine as a Table/Chart

Name of med     Start Date      Prescribing      Reasons     Effective         Notes
Dose                                         Doctor


Short/concise summary of symptoms (priority by most debilitating first)
example:

extreme fatigue/ after work crash, cannot play with children
persistent cough with thick ? gel
constant dry mouth despite sipping water throughout day

Do you have copies of recent tests? Blood work? Round them up and take them with you. I picked up a few red folders and keep medical info in them. When a Dr. does any tests get copies and pass them on to the other Drs. saves time and keeps everyone on the same page. If a med is added, dose changed they get an updated med. doc.

My best to you

[iraisin]

Welcome mnslewis,
I'm glad you found the site too! It has helped me a great deal. These people are beautiful, wise, and compassionate - but most of all, understanding. I wonder sometimes if this disease has actually made us better people through the suffering.

You're right - the world doesn't get it, so don't expect it and save yourself the stress and upset. Just come here and release yourself with what's bothering you. We are here for you.

[eye2dry]

Ask your rheumy at first appt........

If my lab results are negative..but my symptoms indicate sjogrens...will you treat me anyways...OR is he the type of rheumy without positive labs or lip biopsy that won't prescribe/treat ( as in plaquenil, methotrexate, etc...)

some on this forum have had a dr. refuse to on account of negative labs.

I too carry my necessities everywhere. I have stashes of eye drops, gum, water bottles, toothbrush, mouthwash,etccc

in my car, in my purse, at my job and of course all over my house.

nice to meet you...good luck with your appt.....sorry it is so far away

eye2dry

[susanep]

Welcome, and glad you found this board. I have those symptoms as does many on this board.

Yes,when you go for your first appointment, have wrote down things you want to ask, and take with you any meds that you are on.

You also could write down from day to day the symptoms you are having.

You will find lots of info and encouragement here.

susanep

[Autumn]

I am also glad I found this site. I received my official diagnosis last week. I have had some symptoms for the last five years, but was told I had an unclassified autoimmune disorder, whatever that means. I received the diagnosis in a letter along with a copy of the lab report and a prescription for Plaquenil. I was told to make a follow up appointment for one month. Needless to say, I've been feeling a little dazed and lost. That appointment wont be until August. I have so many questions, so I know just reading through your post will probably answer some of them.

[Meld256]

Hi mnslewis and Welcome! 

We're glad you found us and have looked around the site a bit already.  There are loads of topics and info. here I think you'll find immensely helpful.

It's also a welcoming, understanding crowd here who support and encourage one another.     

Quietdinamics has a great suggestion on a summary of symptoms to take to your appt. Rheumatologists generally like it short and to the point.  A notepad to write down what's discussed is useful.

I keep a symptom log to track my ups and downs...it's a tool to see what patterns there might be.  I'm also one of.many who has a long list of symptoms and blood work that looks as if I'm healthy as possible! 

[Meld256]

Msn
We look forward to hearing more...please keep us posted and ask anything at all.  We'll do out best to help   
Melinda