Sjogrens World Forums

Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: paperdoll on September 05, 2011, 01:01:32 PM

Poll
Question: How do you choose to manage your symptoms?
Option 1: I take all of the medications given to me (plaq, gaba, steroids, ritux, etc)
Option 2: I take the heavy duty stuff, just during flares
Option 3: I take the prescriptions just when the symptoms cannot be "ignored"
Option 4: I take mainly supplements to control my symptoms
Option 5: I manage my symptoms by changing my diet (rotation, anti-inflam, food intolerance)
Option 6: I take my prescriptions, changed my diet and take supplements
Title: Managing symptoms
Post by: paperdoll on September 05, 2011, 01:01:32 PM
Personally I've done it all.  I took all the meds all of the Specialists told me for a couple of years, then I went to a Rheumy who wrote the book on Sjo.  That Doc wanted to see me without any meds and to start over (all of the sideffects  made me feel worse) at a baseline.  Then introduced things to manage symptoms.  I changed my diet (became sensitive - my gut was a mess after gabapentin, GERD was heck - had to give up most processed foods and glad I did!) and I take whole food supplements, as they don't hurt my stomach or make me sick, like regular retail ones.

I'd love to see what my peers have done :)
Title: Re: Managing symptoms
Post by: Scottietottie on September 05, 2011, 04:42:04 PM
I voted for taking meds but I've never been on the really heavy duty ones as yet. I take Tramadol every day (I think I may be hooked) but I only take paracetamol as needed. Omeprazole is an everyday thing.
Title: Re: Managing symptoms
Post by: smallfry on September 06, 2011, 04:54:29 AM
Hi Paperdoll
So far i manage my symptoms by taking supplements,But I think that will change with my next visit to the specialist as my condition is starting to get a bit out of controll.
Cheryl
Title: Re: Managing symptoms
Post by: Pisces24 on September 09, 2011, 05:05:27 PM
I am not on any med for Sjogrens. Right now I am working on trying to take better care of me. That includes: eating healthier, taking my vitamins, getting extra rest when I need it, listening to my body and giving myself a break.

I am trying (note trying) to do all those things and not kick myself as much for things I do not do or do soon enough - like cleaning out the cupboards, fridge, or putting the laundry away right after it is done. It may sound dumb but working on "me" is hard.  I am definitely a "Work in Progress."  ;)

Title: Re: Managing symptoms (hope my experience helps)
Post by: paperdoll on September 28, 2011, 06:14:50 PM
Thanks for participating!  Wonderful!

I started out taking every drug they offered I was suffering physically and mentally.
Then after a year I met 2 doctors that worked together and they decided to see "where I was" without meds.

So I started over from nothing. 
I ended up taking meds for sleep as needed (aka PRN), pilocarpine as needed (would take all het time but makes me achy), muscle relaxer for those really stiff achy times and occasionally an anti-anxiety for bad flares (flares and anxiety coincide for me), pain meds only when severe and interfere with sleep.  Try to use motrin for headaches and tylenol for small aches. 

I rotate meds to help protect my stomach (I had bad gerd on all those other meds).  some meds need to be taken constantly or lowered slowly, so only add subtract with your doctor's guidance!

I found out the side effects for me were worse than the disease on its own.

I take a multi vitamin (without immune enhancing herbs - Arthritis orgs say to avoid), high end fish oil, flax oil, coconut oil in my oatmeal.

First I gave up one thing a week.
First I gave up alcohol. 
Processed sugar for honey, stevia, maple grade B, molasses.
Then coffee.
Gave up gluten as in wheat, barley, rye.  I avoid soy but have on occasion with tamari sauce.
Then gave up dairy.  I rotate other milks (almond, hazelnut, hemp, rice milk)
Then gave up nightshades (aka tomato, potato, eggplant - solinicae species is related to tobacco and known arthritis inflammation studies in Norway.)
Turns out like cave man diet...

I occasionally have black tea for a boost or a lighter boost green tea.

Anyway, we are all diff and present differently - so I just read about alternate options all over the world.

Take care!!!!
Title: Re: Managing symptoms
Post by: Joe S. on September 28, 2011, 09:07:21 PM
You did not have my option. I take supplements only. I have not modified my diet since it is mostly looking for left overs or microwave meals. I do take meds for heart, diabetes and gerd. I do not have gerd if I do not take my other meds.
Title: Re: Managing symptoms
Post by: paperdoll on January 04, 2012, 06:03:26 PM
Quote from: Joe S. on September 28, 2011, 09:07:21 PM
You did not have my option. I take supplements only. I have not modified my diet since it is mostly looking for left overs or microwave meals. I do take meds for heart, diabetes and gerd. I do not have gerd if I do not take my other meds.

Wow Joe that is cool - some of the words you list look like meds to me... I'd have to look them up!  I don't take as many meds but sometimes I really need to sleep and the pain or insomnia is too much for me!  Meds always increase my eye nose body and stool dryness... you are very inspiring with your methods!
Title: Re: Managing symptoms
Post by: GeorgiaGirl on January 04, 2012, 06:45:54 PM
Daily I take Plaquenil, Cymbalta, Mobic (7.5 most days, 15 mg on bad days), Protonix, slow release Iron, & Vitamin D3. 

I started doing a clean diet almost a month ago - nothing artificial or refined, organic when possible, no GMO, antibiotic & hormone free meats, etc. Also cutout gluten & dairy.  Had a little more energy, but still had some bad days.

After reading in People magazine that Venus Willams is doing raw vegan, I've dropped the meat as well.  We'll see . . .
Title: Re: Managing symptoms
Post by: paperdoll on January 04, 2012, 07:17:33 PM
Quote from: GeorgiaGirl on January 04, 2012, 06:45:54 PM
Daily I take Plaquenil, Cymbalta, Mobic (7.5 most days, 15 mg on bad days), Protonix, slow release Iron, & Vitamin D3. 

I started doing a clean diet almost a month ago - nothing artificial or refined, organic when possible, no GMO, antibiotic & hormone free meats, etc. Also cutout gluten & dairy.  Had a little more energy, but still had some bad days.

After reading in People magazine that Venus Willams is doing raw vegan, I've dropped the meat as well.  We'll see . . .

Wow you are a woman on a similar path! I too gave up artificial and refined sugars also processed foods.  Sometimes have the odd can of beans... gave up nightshades (now when I have a tomato I notice is causes hand and feet to hurt) because of that Norway study.

Would love to see that raw vegan article about Venus... really want to give up meats.  Or leave it to strict no GMO no antibiotics, no hormones on the odd occasion.  I really have a lot more better days.  If I can feel better often I think this is worth trying!