I'm new to the Forum

[Derry5959]

I joined the forum last night. I was diagnosed with Sjogren's Syndrome in 2005. Symptoms are much worse now. I am going for Rituxan infusion this week. I am in so much pain and recurrent UTIs. I was told Sjogrens wasn't that bad and not cause of all the joint pain, etc. I switch doctors. I am allergic to pain medication any ideas on alternate treatment.

[Bucky]

Hi Derry5959 - welcome!   

I'm sorry you're in such pain.  I hope you find something that will help ease your pain.

If you type in the word alternative in the search box to the top right of this page it will take you to previous threads about alternative treatments from other members.  Of course, what works for one, may not work for another.  These are just suggestions or comments from fellow members - none of us here are doctors - we're just fellow Sjogren's patients sharing this journey together.

Also, if you type in recurrent UTI's, you will find several threads about that too.

I hope you find this site helpful to you in your Sjogren's journey.  When you come here, please know, we get it!   

Bucky

[Joe S.]

I use alternatives. You can find some of them in my signature.

Cognitive Behavior Therapy (CBT) helps with anxiety and depression. The book "Feeling Good" by David Burns is very good on the CBT topic.

Mitochondria DNA damage my be part of Autoimmune Diseases: PQQ, Co-Q10, Acetyl-L-Carnitine, R-lipoic Acid are the supplements that help repair this type of damage. They also help with brain fog.

I also use the frequencies of tones. Tones for Dry Eyes, Dry Mouth, Mumps/Parotid, and for killing a number of Bacteria.

Common supplements are C, B12, D3, Omega 3, multivitamins.

Juice Therapy: 6-8 oz of Carrot Juice per day and if available, 8-12 oz of Black Cherry Juice per day.

I meditate instead of sleep.

Each one of us is unique and what works for one may not work for another. Find what works for you. Do your own research and work with your health care professional.

[Meld256]

Welcome, Derry5959! 

I'm sorry to hear you are going through so much pain.  I hope the infusions begin to help you.  It's good to hear that you changed doctors after being told that Sjogren's doesn't cause joint pain and other issues. 

You've come to the right place to find people who really understand, care, and will encourage and support you.

We look forward to hearing more from you; please keep us posted.

Take care,
Melinda

[Katybarstool]

Hi Derry

Welcome from me too. You have joined a group o very knowledgeable and empathetic people. I'm sure many of them will be along to welcome you too.

Kathyx

[Chickpea]

Hi Derry - and welcome!

I'm sorry to hear that the Sjogren's symptoms have become so much worse recently.  It's good that you've finally found doctors who understand more about Sjogren's and have offered you Rituxan.

Let us know how the infusion goes this week.  You'll be in our thoughts.

Take care - Chickpea

[Carolina]

Welcome Derry,

50% of people with Sjogren's also have Interstitial Cystitis, which is an inflammation of the bladder.  It makes UTI's more likely, and also causes rebound pain AFTER a UTI has been treated.

I find mild water aerobics stretching helps with the bladder pain, once the UTI is gone.

Sjogren's causes all sorts of pain, AND there are a legion of co-conditions that may accompany the more usual dryness symptoms.

Hang in there, girl!

Keep us posted and welcome welcome welcome.

Hugs

Elaine

[Patze]

Hi Derry,

Let me also welcome you to the SJS World and forum!  Please do look around the board as there are tons of topics that you just might find interesting.  You can find them by using the search engine in the upper right hand of this page.  If you can't find what you're looking for, don't be shy and ask away as there is someone usually about that just might be able to help.

Good luck on the infusion, and don't forget to keep us updated, okay?

Take care of yourself now -

Patze

[susanep]

Welcome, and sorry to hear about all of your pain. I also was one that would have so many recurrent uti's through out the years, and didn't know why until now. My mother always did too, and she has many of the sjogren's symptoms.

susanep 

[Derry5959]

Thanks so much for the support and tips.  i had my infusion on Wednesday. I feel very drained today (Saturday). Not sure if from infusion or just the Sjogrens. i am looking forward to infusion working and me feeling alot better.  I will keep you posted.  Thanks Again for the warm welcome!