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.
I hear ya. Welcome to the community and for sharing your story. I, too, have lupus and Sjögren’s among other autoimmune issues and know exactly what you mean. I was very successful when my lupus was in remission, save a flare here and there, and made in the six figures. But, almost suddenly it seemed, I had brain fog, I couldn’t concentrate, I simply couldn’t function and deal with a high pressured job. I stayed as long as I could, but my physical symptoms became so bad I just wasn’t able to function. So, I had to give up my lucrative career and ended up on disability. The last five years I’ve really gone downhill. I’m also on hydroxychloroquine, prednisone, and methotrexate, just to name a few. I’m hoping I’ll start feeling better soon as I’ve only been on the methotrexate for a month. But, in the meantime, most every day is a struggle. I commiserate. I empathize. I understand. We can only try to stay informed and keep fighting to get better and try, as difficult as it often is, to keep up our spirits. On Biotene (sp?) I’ve used it often, but can’t really tell if it helps or not. I’m always thirsty, seemingly, no matter what I do. As for bowel problems, I find my bowel habits go from one extreme to the other for no apparent reason; at least none I can identify. I take probiotics to help keep my good intestinal bacteria up. I don’t know if any of this helps. Just keep sharing and know there are others on the site whom you’re helping simply by sharing your story as they’re likely going through something similar.
Welcome to the group Whiskers! I was diagnosed just this past year with Sjogrens, and was diagnosed with Psoriatic Arthritis 6 years ago.
I also take plaquenil, but I had leflunomide (Arava) added in last year as well. I have all four tear ducts plugged, use Restasis drops, and I'm still struggling with my eyes. My mouth, I use biotene, but more importantly, I use Evoxac. I only take 2 per day. The critical time was at night, as I was having really bad trouble swallowing and breathing, and had a lot of sores in my mouth and nose. It's gotten better, not perfect, but better.
All of the biotene in the world wasn't going to solve my night time troubles, which is why I started on it. I wish you the best with this. It can be a big struggle.
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.
I had started an answer got interrupted and now my message is gone. I've had psoriatic arthritis since about 2005 , have a I have a very destructive form of the disease on affecting both sides of each of my body parts.. I had both hips replaced couple of years ago,and the left one I have had done three times because of dislocations. Right now I need both shoulders to be done as well as my elbows wrists and ankles are bad worse part is my neck my neck and my SI joints are both drastically affected and there's nothing they can do about it I have severe pain constantly so needless to say this is overshadowed the Sjogren's but I'm finding Sjogren's effects Mme in more and more ways than I had thought previously..
and yes whiskers I have a great problem with constipation mostly because I take morphine but the Shogren and all the other issues don't make it any better..
the best thing I've found for it is a large 16 ounce glass of prune juice daily I drink it cold but can also drink warm. I actually have become attached to it...I find it to be great when you ar really thirsty. But oddly this works better than all the chemical laxatives. They tend, over time to lose their effectiveness. I also eat prunes as a snack....'
I wish I had a brochure to hand out to people with whom I deal ...it would list all of the behaviors and have as a heading
"I'm not stupid. I'm in pain the disease affect my brain as well as my joints." Or better yet, wear a T-shirt that says that. My husband is the worst one I have to deal with...He thinks I don't do housework because I'm lazy. He thinks my struggling to find a word is a sign of stupidity.... Anyway.
It's the same story for all of us...Dealing with people who don't understand the disease and its facets.
Anyway you are welcome here. You are among friends.
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. :)
Please know that "lupus fog" can be from mild forgetting where you have put your keys to actually "lupus psychosis" in which it interferes with your CNS. I don't know if you are on the lupus site or not, but it's very helpful as well. I was diagnosed in reverse, severe lupus, lupus nephritis, sjogren's. It's unfortunate the feeling we have as we feel we are losing our minds. I was a former teacher to student's with disabilities...how is that for a turn around? I completely understand the feeling. My husband is very intelligent and one of the things that attracted the two of us. I feel like a failure at this point. But, you cannot blame yourself for something out of your control...you just CANNOT! You are still smart, educated and perhaps you could tutor or offer help to someone on line that is going through what you are. You are still vital and it's important to remember that.
As to the Biotene and other physical issues...I love the Biotene mouth spray and take it everywhere! I do well with avoiding gluten products for keeping stomach issues at bay. It really does seem to help. I went to a wedding over the weekend and was soooo bad, and paid for it literally for 2 days. I use just a stool softener rather than something harsher as it can become a necessity.
You will continue with up and down days, but here's to having more up than down.
Thank you guys so very much! What a wellspring of information! I truly and deeply appreciate your input and feel like I have finally found the help I need. I am going to look into Chinese medicine because of course, my rheumatologist put me on another round of prednisone and I simply can't stand coming off of them (they're great at the beginning though).
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.
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. :)
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.
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.....
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.
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.
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
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.