Hi guys! I am new and I assume many new members come here in a fit of desperation. If not, I apologize in advance for being a downer.

Here is my story. Diagnosed in 2010 with mild lupus and sjogren's. Changed diet, went on plaquenil, went back to school, got degree in plant science, got a dream job at a botanic garden and had a terrible flare in July that couldn't be helped even with prednisone. Took a medical leave and was told by rheum that outdoor/physical work was 'too much'. Got an easy 30 hr a week job selling vitamins and the fatigue and heavy legs got worse and worse. Well after prednisone was weaned I continued to decline. The most disconcerting aspect of this seemingly endless flare is brain fog. Complete inability to find words, sporadic slurring of speech, inability to enter correct spelling when being dictated to, letter by letter. The physical aspect was enough to stop working but the mental disability made it impossible.

Very sad as I have taken pride my entire life in being strong, intelligent and eloquent.

Has anyone had any of these experiences?

Also, what to do about chronic constipation and has anyone had success with Biotene for dry mouth?

Thank you for reading and I promise to contribute positive info just as soon as I come out of this low. It is in my nature to be positive.

Views: 364

Reply to This

Replies to This Discussion

Hi Whiskers, in regards to taking prednisone, ensure that you take vitamin D and also calcium tablets while on it and also for a number of weeks after. Reason being that prednisone leaches the bones of calcium. This isn't apparent immediately but becomes an issue later on and you can end up with early osteoporosis. But this can be avoided by taking vitamin D plus calcium. ;-)

I'm new to Sjogrens....I just found out I had it in addition to the PsA I"ve had for 6  years....I know what the future looks like pretty  much with the PsA ....but can you give me a link to look  at...or just in writing describe what the future isfor a person with Sjogrens?

Arabrablynn said:

Evoxac helps me with dry mouth / eyes. Remarkably...

OTC I try to drink alkaline bottled water, do oral hygiene with dr katz products (see on Amazon), and use steam therapy. I also take fish oils / primrose oil every day. This may help with your sx. including constipation.

The future we have is scary. Do as much preventative as you can. :)

Hi, here are a few links for you to look at. It also depends whether you have Primary or Secondary Sjogrens. Some people with secondary only have issues with dry eyes, mouth, throat and dryness in other areas but not organ problems. Whereas, with primary the body's organs can also be involved. But also while every person is similar with symptoms, no two people are the same and no two people progress at the same rate.

Management is using products such as Biotene: mouthwash, oral spray and oral gel. Gel is good for night time as it lasts longer. For the eyes I have my tear ducts lasered shut as my eyes were extremely bad. Having them lasered allows the eye gels and drops to stay in my eyes. So the use of eye drops several times a day, or as required is something you must do as otherwise you can end up with damage to the eye. Eye gel is very good at night time. Only buy products that do not have preservatives in them. Optive and Genteal are good products.

Sleep with a glass of water neat to the bed, plus spray and gel. Buy yourself a vaporiser and use it on nights when there is little humidity, as you will find your symptoms of dryness will be worse when there is not much humidity in the air. When you drink water just sip it as with Sj we have little or no saliva production. If we have some production and we drink water normally, we effectively wash what little saliva we have down our throats which is not good, as we need saliva to help break down our foods and also for good oral health. If you have very little saliva production ensure you use Biotene spray or gum after eating as the zylitol, even though it is a sugar replacement, has a protective mechanism with the teeth and the product helps to keep pH at the right level so decreases the chance of cavities.

Always floss teeth before and after cleaning as optimal oral health is imperative as cavities are prevalent with Sj if one isn't careful. Clean teeth more than twice a day also helps and use the Biotene mouthwash as a gargle and then swish it around the mouth before spitting out.

Skin can also become very dry and flaky. Don't use soaps. Use products that are moisturising. Plenty to choose from on the market. I use Alpha Keri products - the wash, the bath/shower oil and also the intensive treatment. Ensure that your feet and legs are well moisturised as if skin gets too dry and cracks appear then cellulitis is possible and you don't want to get that. Taking Flaxseed oil also helps a little with lubricating the eyes. Flaxseed definitely helps alleviate the constipation issue.

http://www.sjogrens.org.au/about.htm

http://www.garvan.org.au/research/our-work/sjogrens-syndrome

http://www.arthritisaustralia.com.au/images/stories/documents/info_...

Welcome! I too joined in a moment of SS frustration. I was also diagnosed in 2010 with primary Sjögren's. Been living with chronic fatigue and joint pain my whole life. I had the dryness symptoms too, but having never known otherwise those were hard for me to pinpoint. I'm a mom of 3 with a 4th due any day. Hope you find the answers you seek! I used to be full of answers, but the brain fog got me too. Ah well.

Cheers,
Mrs. C

Whiskers,

That's great that you are connected with someone who recognizes and understand epigenetics.  If you can scape up $99 you can get a really nice genetic profile that will show all your genes and gene mutations/SNPS.  These are crucial because some are blocking the methylation pathways and causing havoc.  Here is 23andme website....on the website there are instructional tutorials that explain what SNPS(genetic mutations) are and other details of genetics that are easy to understand.

 

www.23andme.com/

It's a saliva test, you just sign on order it, it's sent to you, you do the test and mail it back.  Simple.  Then when your raw date is available online, there are two APPS/websites online that interpret the results.  They are connected with 23andme and can retrieve your date.  Then you print it out and you can take it to your doctor. 

https://livewello.com/  This one is $19.95 and you can have unlimited interpretations.  It's great.

 

After you do that you can go onto Genetic Genie and it is free and will also give you commentary on your mutations.  http://geneticgenie.org/

I did both Livewello and Genetic Genie. 

 

The doctor that I am to see to treat me and help me with my results is an MD who treats autistic children. Those with autism share common problems with their methylation  pathways and genetic defects, very similar to those patients who have autoimmune diseases. 

 

You may want to do some reading if you haven't already, such as Dr. Amy Yasko's work.....

You can read her book online that she has posted on her website...........http://www.dramyyasko.com/resources/autism-pathways-to-recovery/cha...

 

Videos that explain SNPS

http://howirecovered.com/methylation-made-easy/

 

Lecture by Dr. Benjamin Lynch

http://howirecovered.com/understanding-methylation/

 

Ally

 

 

 

 

 

 

 


 
Whiskers said:

Wow. Awesome. I just had a consult with someone who wants to put me in touch with a clinical nutritionist who studies the epigenetic impact on autoimmune illnesses. It's nice to hear you mention the link! He said a chemical trigger turned on a switch that he believes can be shut off.  I too am on an anti inflamm diet- no sugar, gluten, dairy, meat, nightshade. Needless to say, I eat greens and beans, nuts and oats. Even stay away from a lot of fruits as fructose creates pain in my joints.
 Thank you so much for the input and when I get enough money together I will make apt and share what I learn
Allergic said:

Welcome to the group Whiskers.  I have Sjogrens, Lyme disease, CHF, FMS.  Sometimes there is more than one problem going on once the immune system gets altered in some way. I've been dealing with all for fifteen years.  I've gone ahead and have gotten genetic testing and will be working with a specialist who fixed broken methylation pathways.  It appears that our genetic mutations have much to do with what goes on with the immune system.  This is why some people can be under terrible conditions and never get sick and others develop chronic conditions, autoimmune diseases and just can't get improvement.

I haven't done a discussion on this yet because I am just starting the process of dealing with my genetic mutations through treatment to see how much improvement I can get.  The autoimmune diseases are multifaceted and each person is very individual since they carry different genes and mutations.  This new epigenetics is a great hope for the future for people who suffer with these chronic disorder. Meantime, we do suffer with some really uncomfortable symptoms.  I have not found any rx drugs that have done me any good.  I have found that changing my diet to an anti-inflamatory diet has helped me with alot of the symptoms.  There is alot of information on this forum and tips that may help you. We do understand how life changing these chronic conditions can be.  It can be overwhelming at times.  I try to find something positive coming from the experience of having it, even though it is tough to take sometimes.

I'm sorry that you have to have this Sjogrens, but at least you know that this is one condition that is identified. 

Take care, Ally

Hello, and welcome I to have lupus and sjogren's . And it's a hard thing to manage , you have spoke about working out doors that insides it self can been impossible with lupus because of the sun , but I have found if I I were rash guard shirts ,or get laundry soap from red cross this will put spf in all your clothes making sure you don't break out while doing your job. As far as the mouth wash like might work if you could keep in your mouth ,but you can't . The med I use is evoxoc I take this 3x a day and I don't have to drink like 10 gallons of water ,no sucking on candy.I hope you were dx early enough with me it was over a year half maybe longer know all of the top of my teeth half to come out, And it cost from 80 to 100,00 dollars who has that so I have been searching the net for foundation or anyone to help me , I am willing to pay them like 75.00 dollars a month towards however they need me to . I just need a break , I would like to smile again , and eat            eat with my teeth cracking with ever bite So maybe this might help you get out of your slump ,always try to find something to help yourself like mine not stoping till I find a foundation to help me , and with lupus I workout 6 days a week even if I don't feel like cause at the end I feel strong and mentally as well

Right here at this site there is info on Sjorgrens or go to mayo.com or web.md or google.  Hope this helps you.
 
Qadosh2him said:

I'm new to Sjogrens....I just found out I had it in addition to the PsA I"ve had for 6  years....I know what the future looks like pretty  much with the PsA ....but can you give me a link to look  at...or just in writing describe what the future isfor a person with Sjogrens?

Arabrablynn said:

Evoxac helps me with dry mouth / eyes. Remarkably...

OTC I try to drink alkaline bottled water, do oral hygiene with dr katz products (see on Amazon), and use steam therapy. I also take fish oils / primrose oil every day. This may help with your sx. including constipation.

The future we have is scary. Do as much preventative as you can. :)

I will just add a welcome to the group!  Everyone here has answered your questions so well.  I also would encourage you to join the lupus group.  Tons more info there for you.  Hopefully will see you there too.

hi,and welcome.

No you didn't sound like a downer.  You sound like someone who had to put their life-plans on hold and instead got handed a lousy disease that would ruin anyone's optimism.  I'm very sorry about all that you've lost to this disease. Heck. I'm sorry what I've lost to it too.

I use Biotene products....they are wonderful.  I carry the mouth spritz in my pocketbook along with the gum and a bottle of artificial tears. Don't leave home without it!

As for constipation....I've tried EVERY possible thing. I find for maintenance, the best thing is a 16oz glass of prune juice daily.  I still suffer with difficulty in  going, but at least with that things keep moving., however reluctantly.   If for some reason I miss that prune juice I usually have to use a Fleet enema until I'm back with my regimen.

I'm kind of  a newbie also. I hope you find comfort and  a safe place here to vent

Cynthia

You are not alone.  It's all normal for us & every human being in some other way! I was strong, etc. too, but now it's time for you.  Everyone leaned on me & it became too much!  I'm still a giver but you can't give what you don't have.  You can still be needy & positive at the same time.  It's very hard at times to lose some of your "normal old self" & it's ok to be down.  Some times I'm flying high & the smallest thing can make me burst out loud crying.  I try to change the negative thinking to something positive by practicing it, Mental gymnastics. It helps to know you are still the same person. I find that I can "see" things I did not see before my illness has advanced. I realize it's still me, different at times & that's ok! As far as the biotene, what helps me the most is the mouth wash. I find that the mouth spray is not as good as water. The toothpaste, losenges (forget spelling too), & gum are not that great for me but try them. Eclipse gum is my best friend! Brain fog comes & goes, I just let myself be that way, humility & honesty work well for me. Many times I'm hoarse, clear my throat, or can't speak, so I just tell people I'm not contageus (can't spell any more - need spell check), whisper, or just say I have a chronic illness & I'm not clearing my throat because I'm impatient but just dry, etc.. Sometimes I just say I can't remember for now.  Sometimes I forget & can't remember no matter how hard I try & then what I tried to remember just comes back to me as easy as could be another time. I was a whiz in school in every subject. If I didn't get it, I would study with pencil & paper/photographic memory, but somehow writing it down connected it to my brain!  Was tops in everything & my husband says I'm extremely smart & quick at it.  I always tell him I'm not.  I never could do well on timed tests & now I know why.  My grades/ability never matched results on standardized tests.  If it they were not timed I would have done better, not because of more time but because the stress level would be decreased.  Without the stress I could do better. I was always amazed when people could study & get a C, I didn't know how to do that. I had to study so I could get an A. If I earned it & didn't get it, I didn't understand why.  I had 2 professors who never gave A's even if you earned them because they believed nobody was that good. They really meant perfect, which I was not, but I guess they didn't believe in the grading system either!  It wasn't about the A but fairness. I didn't have a competitive spirit, just the way I had to study, all or none kind of thing, didn't think much about myself being better or doing better, just me. It's ok to be down & need support! We're all human & now we just have to slow down & smell the flowers & take time for self & take care of self.  The best thing to do is to accept yourself the way you are.  This illness is hard but just do what you can for yourself & others. My faith helps alot!  Suffering in some way is part of our human condition & helps us understand others in need because we have been there and are there for someone else going through it (too). Maybe it helps us see we really can do nothing on our own. You are still positive even though you are down, that did not change & it's ok to be human.  Sometimes we forget that because people expect us to be perfect but don't look at their own imperfections.  We're not perfect & it's just fine, allow yourself to just be you!  The best thing to do is to get your stress level down & not expect yourself to do more than you can, because you can add to your own stress.  As far as the constipation, that's goes along with it too. I have lots of upper & lower gastro problems that require lots of meds for me. There is no regular for me. I do have a gastro doc too.  Miralax or generic form is an OTC med, will help you. My problems are more complicated. I can be constipated one minute & the opposite in the next, unpredictable for me, because I also have motility disorders of the colon as well as the esophagus. I was diagnosed this year at the age of 60 because no tests showed I have any other illness as primary. I have been tested for lupus but it's neg.. I was tested for Sj via blood - all neg.! Eye test showed Sj, finally! Think I have primary Sj. I'm not sure, I think I could have lupus because I have some symptoms of that, but only had blood tests. Going to RA soon who does research & who can possibly repeat those tests to make sure. But I'm finally on the right track after being sick most of my life when I look back at every thing now, I just didn't know it.  Best wishes & a big smile for you.  Remember Positive isn't a feeling, it's still you when your down! God Bless you! P.S. When people don't get it, I still have my faithful pet/dog Nina who's always there for me. Sometimes it's just as hard for the people we live with as it is for us & they are suffering too. We just have zero tolerance when we are in need due to this illness. We want to like before, but we can't control it. It's ok to be out of control in that regard too. I recommend this site to family members struggling to understand why we are so different than we were before & they don't understand what's happened even when we remind them why! It's very frustrating for all! I've had to stay away from alot of family/people in my life because I can't handle the stress they add to it.

Reply to Discussion

RSS

Events

Help Us Help Others

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Bens Friends

Join Ben's Friends

To Support SjogrensSyndromeSupport.org, Click an Ad. Or Two

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

“Either you can let it overwhelm you or you can keep trying to overwhelm it, the fight is yours alone”

© 2014   Created by Ben Munoz.   Powered by

Badges  |  Report an Issue  |  Terms of Service