Thank you for this discussion. In June 2006 I started feeling terrible ie brain fog, fatigue, nerve pain, cramping, Raynauds and the classic “felt like something was stuck in my throat” lol… and 4 years later I was diagnosed with Lupus. Nothing showed up in blood work, MRIs, Xrays, CTs, or countless specialty dr visits. That entire experience in and of itself was horrific, demoralizing and insensitive to say the least. My mother in law at that time was a well respected practicing primary care physician and she even thought I was crazy. Funny thing is I was being in vain about my hair texture changing and it got me a visit with a dermatologist. It literally was a blessing in disguise as he discovered the culprit and that is how and when my lupus journey started in Aug 2010. It took about 3 months to start feeling better once the medicine kicked in. I went into remission for the most part with a few hive like rashes here and there - it was bliss. Sadly I had learned how to live with permanent brain fog since June 2006 so I don’t count that… LOL. And then in 2019 my blood work indicated I had Sjogrens and my rheumatologist suspected I had Sjogrens all along and was misdiagnosed because I didn’t report “dry eyes”. Nonetheless the Hydroxychloroquine I was taking for Lupus worked for Sjogrens so my Dr wasn’t too concerned. I will say since the official Sjogrens diagnosis, I have progressively regressed and am completely out of remission. The arthritis is a beast and sneaky LOL. But the absolute worst are fatigue, joint pain throughout many upper and lower extremities, nerve pain, night sweats and daily headaches. Although I have a wonderful family practice dr who tries to investigate my concerns as my rheumatologist has resigned to “it’s expected with people who have your health conditions” (I’m like um… o k a y), I have decided to leave it all in God’s hands and accept it as a thorn in my side! I’d rather be closer to God than go through another cycle of torture trying to prove “something else is going on” LOL. I know my body and it’s definitely not the same Lupus Gal or even her Sister Sjogrens. So many other weird, unexplainable things are happening ie come & go rashes, pulsating eye, back pain, irregular periods yada yada… with the classic your blood work is fine minus your flared up Sjogrens and Lupus markers. So it is what it is and I’m grateful to be smiling and moving right along without the Methotrexate & Prednisone and whatever else oh folic acid 😂. I’m just over the multi-meds man! It’s just me and Hydroxy….quine for the long haul my friends. It’s a struggle for us autoimmune disease carriers because we look fine on the outside and heaven forbid if you are cute, but in fact we have a whole lot going on internally that isn’t in plain sight. Anyway I don’t share about my health but tonight I felt the need and I hope it helps someone to know you’re not crazy or alone. I pray everyone finds the right path, respectively, to a plan that works towards improving your overall health, being in long-term remission and/or fully eradicating this terrible disease ❤.
Yes, absolutely! People will say, "you don't look sick"...or the infamous, "you're too young to be having all that pain." Sharing your story may help someone else going through one or many of these autoimmune conditions. Keep praying and remember: He won't give you more than you can handle. ❤
I was diagnosed with Sjorgrens in 2015 from a lip biopsy. I also have Small Fibre Neuropathy. I choose not to be on the meds and use food as pharmacy. I find the meds scarier than the disease.
I am 64 and I am off all of the meds except for my opiate three times a day because I've had three back surgeries and a neck surgery so I suffer from chronic pain as well as Sjogren's. They work. I also consume no sugar, and I eat a ketogenic diet, and I think that helps me. But I hurt. It's just life.
I wish that the organs that sjogrens can damage was talked about more. Sjogrens caused pancreatitis for me, and it’s chronic. Lungs aren’t doing well, losing my eyesight and have severe esophageal spasms.
Betty, I had no idea Sjogren’s could cause so many health issues. I haven’t been diagnosed as yet, but have a few of those symptoms, like dry eyes lips exhaustion pain being the worse. Thanks for sharing, I’m happy to find this video, thanks to these lovely ladies.
I suspect I have Sjogrens, my Rheumatologist clinic is no longer taking my insurance due to the DSHS supplement ( on Medicare) so now have no Rheumatologist after 25 years
I was diagnosed with fibromyalgia in 1997 and Sjögren’s in 2007. I have severe dry eye; taking Restasis and Xiidra with little success. I moved to another area and changed my eye doctor. My new Dr did a therapy to reverse dry eye. It is called low level light therapy. I did three treatment sessions and now don’t use drops at all. Not everyone knows about this treatment and am so very happy this it found me.
Hola, hello beautiful world God Almighty bless all ❤️Thank u yes ,I have not been diagnosed,but I strongly believe I have it I beyond the meds God bless all especially people with health issues ❤️
These videos are SO helpful for me! I was just diagnosed with Sjogrens, RA and fibromyalgia. I just started taking methotrexate and folic acid, and I've been taking pilocarpine since diagnosis 2 months ago. I've been taking omega 3 for quite a long time because I've had dry eyes for a few years. I think I was in denial for a few weeks, but now I'm beginning to come to terms with all of this. I also have type 1 diabetes. I've been on a whole food plant-based diet for the last 7 years, and I think that has been helpful for me. I also live in the Seattle area! THANK YOU for your videos!!
It's so nice to meet you and hear that you are doing pretty well with your current treatment plan! Being in denial is absolutely a normal part of the process, I still go into and out of denial about aspects of my chronic illnesses even now, 20 years after my first diagnosis! Hope you are doing well in the cloudy long weekend we're having in Seattle!
Leaky gut tends to be part of autoimmune. I have been working on my gut health. I also dont have a gall bladder so i look for ways to increase digestion so i absorb more nutrients. In the past few months i started with the dry mouth and eyes. :( i have been able to keep my thyroid function in range (graves into hashimotos) i have been gluten free for 15 years. The past few months my energy has improved with benfotomine and multi Bs. So true autoimmune conditions travel together. Their symptoms are similar too. Thank you for the info!
My journey is eye inflammation, severe, got diagnosed with dry eyes. Then came the inflammation of the Bartholin gland that eventually (after 5 drainages and a lot of antibiotics and the whole process) ended up in removal surgery, then cystic acnee out of nowhere with inflammation and infection and now, a month after I finished with vitamin A treatment (accutane) I have a bump in a breast. I'm seeing the doctor tomorrow, so I'm not waiting. On top of that I have Hashimoto's, rheumatoid arthritis, psoriazis, some form of neuropathy on the right side of my body. I have lost a lot of weight 15 years ago and never gained any, even with two pregnancies, I have excesive bowel movement. And yes, fibromyalgia was thrown in the dialogue. A lot of fatigue, a lot of brain fog, I get "404 errors" a lot. But I am finally getting answers for all of my simptome, after years and years of "maybe it's all in your brain, you are imagining things". Meanwhile I am struggling to get out of bed in the morning because of the pain. I did change my schedule: 8 hours of sleep, rest during the day, trying to eat, taking my thyroid meds on time, making lists, asking for help!!! I think that is the most important thing I did: I started to ask for help for daily stuff. This talk helped a lot. It's telling me I'm not alone actually and it's not in my head. It's pretty busy up there already 😅
Thank you so much for taking the time to share your story and your response to this episode, I'm sorry to hear you've been through so much but I'm happy to hear that you are feeling a light at the end of the tunnel and that our chat helped!
I am in the 40% who has negative SS antibodies. I was already disabled due to many fusion spine surgeries. I went to the rheumatologist hoping for a non radiographic axial spondyloarthritis diagnosis bcuz I just feel my immune system attacking my spine but I came away with a Sjogren's syndrome diagnosis. Of course he called it secondary bcuz I was diagnosed with Hashimoto's in 2015. I like that he was progressive enough to diagnose even though the antibodies were negative. But he only worked on finding an NSAID for the polyarthritis pain. A year later I finally asked for HCQ. HCQ takes a long, long, long time to start seeing therapeutic results, 6 - 12 months. I had to titrate dosage to the full dose. I've been at the full dose 4 months and it has slowly helped but I was pretty much Bedridden. I'm still expecting more therapeutic results in the next 8 months 🤞
The best way to understand sjogrens is to feel how dry the inside of the mouth of the person with sjogrens it would blow your mind Sometimes you think your goning to go off the deep in and go mad.
My eyesight is nearly gone. Have Blood behind the retina . GreaT dental hygiene throughout my life . All of my teeth are chipping falling out . I have RA. PSA, Fibro, small fiber neuropathy. IBSD . My symptoms didn’t start until I was in a car accident and had to have an ACDF a surgical procedure with cadaver bone and titanium Plates . Wonder if there’s any correlation to the cadaver bone or titanium plates?
Multiple Sclerosis and Sjogren’s and other autoimmune disorders. (IBS,Diabetes, arthritis, lung damage from a chemical, so on oxygen 24/7)… no one ever told me anything about Sjogren’s other than it was responsible for my very dry eyes and mouth. That’s it. Finally finding out about everything else Sjogren’s causes has finally taught me about the reality of it and made so many things make more sense. I’m late to your party, but great to find more coming online. ✌🏼💜
This is interesting as everyone is different because the opposite works for me. I’ve been on a carnivorish diet with lots of red meat and raw dairy and my blood work shows I’m in remission. My doctor said it’s like I put it to sleep. I feel better and stronger.
It's really great when you can find something that works for your body. The nutrition / dietary change aspect of things can be so confusing because there's a giant variability between what works for one person versus another - like you said, plant based works for some people while carnivore works for others. It's hard to be patient with all the trial and error. I'm glad you found a dietary plan that work For me with RA, I would just be sure to check in with my rheumatologist and cardiologist about the safety of the carnivore diet due to the increased risk of cardiovascular disease with rheumatoid arthritis.
What blood work specifically shows remission cause my doc never says if I'm in a flare or not although I feel and know I am and it hasn't let up. Hydr...has helped with the fatigue but the pains is a mix of joint muscle and then my neuropathy.
My cataract eye doctor actually said to me last week: "Oh, you women always worry that your makeup is the problem." He's barely familiar with Srogrens.
Thank you for this I’m hoping to get a diagnosis finally. 9 years in. I have moments where I’m having flares and tons of symptoms and bloodwork and then not as bad. Looking for Rhematologist #3
My joints started popping a lot, which I don’t understand. The pops are usually painless but very strange feeling. When my lower back joint pops, my hip starts hurting. Any ideas? I don’t understand all my tests-I had 3 ANA blood tests that are positive, low white blood cell count and a bunch of other abnormal test results. I saw a fibromyalgiarheumatologist and she was absolutely horrible! She knew nothing! I go to Hopkins but I’m not able to see a rheumatologist until March 2024. However, my new primary seems excellent and understands. She’s sending me to a bunch of different doctors and a sleep study. Oy vey! I just want them to tell me they also believe I have sjogrens and if they think anything else is going on. Sorry for writing so much, I’m so overwhelmed and tired. I have a long list of nutty symptoms as I’m sure we all do. I apologize for being negative.
You're not being negative, you're expressing the reality of what you've been through. I'm so sorry, and I am so glad that your primary care is proactive. Rheumatologists differ greatly regarding how willing they are to consider diagnosing based on symptoms alone versus boodwork and other more objective test measures. Crossing fingers (Gently) for you!
I'm so glad it was helpful, I agree it's definitely like putting together a jigsaw puzzle (where the pieces sometimes change shape as you're putting it together!)
Hi Cheryl, I would love for you to do a video on how to not fall for a wellness scam. I almost got pulled in a few times with the doctors on TH-cam. And some of them can cost thousands of dollars. What supplement was Dr. Wada taking that caused liver damage? I hope it’s not turmeric?
Absolutely! It burns me to see such people taking advantage of people who are suffering. My habit is to practice what I was taught; always look for the vested interest. If they can make money out of their message don't trust it.
I have just feewdays back a medical emergency, with thrombocythemia, with sjogren Disease!!! My Blood platelets was just 0. I was having a Cortisone Therapy. Again after one week i need to return back to hospital....
twenty/twenty is a collection of products designed by a board-certified ophthalmologist to help enhance the natural beauty of your eyes while keeping them healthy.
I was diagnosed 20 yrs ago with sjogrens fibromyalgia nerothopy being a immunologist I've had test n my histamine attacking me to swelling up on my eyes lips swelling up so bad on 720mg aday of fenafexldin got RA mixed connective tissue disease pituitary tumor eds macrosisi my red blood cells are huge I find it hard to breath on standing to long my blood pressure drops I go pale head woozy n all I see is white through dry mouth here lost all my teeth dry eyes I can't see to drive at night n my eyes leaking and stings along with RA I got osteoporosis aswell I've had steroids injection in my knees did nothing got 13 bulging discs 3 are in neck L5 disc and S1 disk is sitting on each other got no entrance or exit in nerve thst when standing 10 mins im crippled just diagnosed with inflammation of bowel I have urine n sometimes bowel incontinence yous probably won't see this comment as this pod is a year old
I can't even get a dr to think outside the box...i know i have Ehlers Danlos and POTS and nearly every symptom y'all listed.. many of which do not fit w EDS. Currently the weight loss, fatigue, brain fog and pain in my hands is severely impacting my daily life. I have negative RA and none of the antibodies.. bc of that i get dismissed and no further testing is done. What are the magic words to get taken seriously?
I'm so sorry, I think it might be helpful to reach out to other patients in your area who have EDS and POTs and see who they recommend for diagnosis and treatment, it seems to vary drastically depending on who you see! The nonprofit EDS society might also have some recommendations www.ehlers-danlos.com/
Hi. Recently diagnosed with Sjogrens Syndrome with severe dry eyes, mouth skin. Gastritis, h-pylor infection with IBS with eating certain foods. Told by the Rheumatologist to keep away from all flour products and to take fish oil with omega 3. No other treatment given so far. Should I be on hydroxy...quin too? Ophthalmologist assessed my eyes for plugging the tear ducts also.
Hi there, if the current plan your rheumatologist recommended isn't working well it's always a good idea to check back in with them and see what other options might work for you, including potentially medication! I hope you get some relief soon!
am 24 years old, I have Sjogren's and Hashimoto's disease, I am afraid that I will have lymphoma. My symptoms have progressed in 2 months, I had an intense stress period, the disease progressed
While there is good information it is extremely distracting when you are constantly interjecting into the guest’s presentation and going off on a tangent. Sorry to be so blunt🥴
No worries, I understand the feedback, I am working on it :-) Fortunately the podcast has had over 100,000 downloads in 3 years so it doesn’t seem to deter everyone from listening, but I understand how it can be distracting! Luckily there are lots of other podcasts to choose from if you don’t like mine, including Dr Wada’s own podcast which is excellent!
I have been labeled with fibromyalgia. I have seen a rheumatologist and she says I do not have Sjögren’s. My primary thinks I do. I believe I have Sjögren’s. Somewhere do I go now?
I had a negative ANA and negative ssa and ssb but have all the dryness symptoms and low blood pressure and diastolic dysfunction in the left ventricle and brain fog. I also lost a bunch of weight but put it back on. If all the blood tests are negative i wonder what my likelihood of having sjogren's is
What is the name of the serum Dr Wanda uses that helps her dry eyes; originally made for dry eyes but incidentally grows eyelashes? I have severe dry eyes and neither restasis or Xiidra is enough. Thank you so much! I enjoyed the video.
The name of the serum Dr. Kara mentioned was Growing Lash & Brow Serum from Twenty/Twenty Beauty. She actually has a 20% discount with them if you use the code "crunchyallergist" if you purchase!
What's the best eye drops for this ? I'm on restasis daily. I have tried every eye drop for dry eyes there is .keep 3 on me at all times ! Dry eyes and mouth are the worst. I go through 4 biotene lozenges a night on nightstand
Have you considered the whole food plant based diet that Dr Brooke Goldner has? I’ve found some very positive changes in my body and autoimmune diseases by following her protocol.
Hi there, I am not a candidate for that diet. I follow the American College of Rheumatology's recommendation of the mediterranean-based diet plus the recommendations of my registered dietitian as I have other GI issues that dictate what I can and can't eat. Glad to hear you've had positive changes with changing your eating patterns!
Years ago a dentist had business cards from the Sjorgrens Syndrome on her front desk. I looked up information because I was having dry mouth and eyes. My primary doctor agreed to test my sed rate which was high. I saw a rheumatologist and was told I have the Rheumatoid factor and Sjorgens autoimmune disease. I use eye drops and have the dry eyes under control (usually). I always have a water close by when I eat. Teeth not in great shape but what I have I use a waterpick after I eat (when I can) I’ve suffered from facet syndrome for 2O years. I am fortunate to be able to receive PRP or prolotherapy when I have facet flares. (Never easy to heal from treatments) at times I get a few weeks of relief. I’m thinking of going back to my rhematogist to possibly start a medication. Reluctant but Hopeful) 🙏
Finding a doctor to treat my Sjögren’s seems to be impossible. I have moderate neurological involvement, dryness, no salivary output, severe dry eye, autonomic disfunction, and gi involved. Also, low igg. Anyone think an immunological eval would be worthwhile since I can't find a rheumatologist in Seattle area who will see me? (Mine turned into a jerk with this diagnosis 😢)
I was recently diagnosed with secondary sjogrens (with SLE). Last year, I started experiencing chronic constipation and severe dry mouth. I developed Reynaud’s in November last year. I can’t sleep, I have daily headaches, I’ve started itching like crazy all over my body and it’s like a flare of a rash that turns my body red and it feels like it’s on fire. I’ve also had POTS symptoms for well over 10 years but I can’t get a diagnosis for those symptoms. I don’t know if this itchy thing is due to any of my autoimmune issues!
?????Hello, I have veen diagnosed with 1ST Lupus (only + ANA), negative on Sjogren's, have horrible diarrhea often, dry eyes IOW all over the board, last dx is MCTD, UMCTD.. I was treated with methotrexate injections for >2 years. ( I suppose they are really the same.) Many other terrible symptoms over the years. Latest problem and my QUESTION: experiencing loss of balance. Can the autoimmune conditions cause this????? BTW: my rheumatologist has retired and moved --noone took over her practice. LOSS OF BALANCE is my main concern. Have had MRI which is normal. Thank you for this zoom and any help is appreciated.
I'm so sorry to hear you've had loss of balance. It's not one of the common symptoms of autoimmune illness that I'm aware of, but it could be a secondary symptom especially if you have any involvement of your inner ear, which is where your vestibular center is located (your vestibular sense is involved in maintaining your sense of balance). I hope you're able to find a new rheumatologist soon and can get some answers!
Thank you for sharing your journey. It seems these autoimmune are an end game..: in my own opinion… possibly stemming from an underlying connective Tissue disorder such as Ehlers Danlos Syndrome or some such connective tissue disorder without a name. Then in waltzes Mast Cell Activation, MCAS and POTS Postural Tachycardia Syndrome… the classic trifecta. Then, in my opinion becomes a full house when you add the developmental Autoimmune due to the signaling of threat from external to internal & add neuro development changes they get labeled Autism to the trifecta. Then you have the full Full House lay those cards down on the table and walk away. 1) Ehlers Danlos Syndrome (connective Tissue Disorder genetic pre-existing) 2) Mast Cell Activation as a result of the body brain feedback loop sending threat signals due to the loose connective tissue. It assumes all things introduced into its environment… all thing introduced outside and inside the body as a threat because the the brain is getting a signal of threat due to the failing connective tissues signaling the brain something isn’t ok. There. That. 3) Postural Orthostatic Tachycardia due to the same signaling due to the connective Tissue Disorder. Same rhyme… same song same reason as MCAS… signaling I’d threat loop due to connective tissue issues. 4). Autoimmune… when the Mast Cells discern the threat is within itself due to these environmental thing from without becoming part of the blood, brain, tissue crossing the barriers due to the weak connective tissue issues pre-existing. 5). In a young developing brain this dynamic is going to look and present as Autism. What we call autism. A heightened sensory due to a body and brain developing in heightened alert mode due to a connective tissue issue making the body fail and sending threat signals to the brain and keeping it in hyper arousal or shutdown all the trauma responses presenting… flight fight freeze fawn. In my opinion it’s ALL the normal response of a brain and body to a connective tissue FAIL
how do you get a doctor to give you hydroxycloriquine i have RA and Fibro I lost all my teeth and i have diabeties heart problemes i need a double knee replacement and my eyes are terrible and cornea is damaged i could just cry
I have dry mouth and dry eye and dry cough. Sero negative, lip bx negative was deemed negative but showed atrophy and chronic inflammation. Where should I turn next? I also lack sweating and have PN
Yes I have. The rheumatologist was horrible to me and wasn't interested in my history. She kept asking me why I had to know and that she would not treat me any differently if blood tests and bx were negative. My pulmonologist asked the same question. I've had dry eyes for 10 years and dry mouth x 1 year. The dry mouth is debilitating. I cannot sleep. Now I have been diagnosed with oral lichen planus. The opthalmologist feels I do have an autoimmune disease.I feel lost. No one is helping. You talk about fatigue and it is horrible. I get very hoarse, have a dry chronic cough. I had to retire because I could not continue speaking on the phone. I am an RN. I was dx with sarcoidosis about 8 years ago, from a positive colon bx during a colonoscopy. My pulmonologist has dismissed my problem with coughing and does not feel I ever had sarcoidosis. I even have to leave a restaurant because of a cough...Embarrassing. I am up several times a night due to cough and severe dry mouth. Would a saline updraft help? Also, I have read that you can have PE with Sjogren's. What is your experience with this? I had unprovoked PE in all lung fields in Dec. 2016 with new onset Afib. Would you dx someone like me without sero-positive results? I also believe the lip bx was done incorrectly. He only obtained 1 bx. Thank you. Ruth Pierce
I'm also neg for the auto antibodies which you can be with sjogrens . You have the features. Y need a new rheumatologist who is an expert in sjogrens It is hard to diagnose but if they treated you and you improved this may show you have this. You are not being treated with respect. I have nerve pain which is a more severe sign ie autonomic neuropathy too prior to dry eyes. Dry nose and dry private parts. Mine has also started mast cell activation now . Dysautonomia International on TH-cam have some brilliant videos about all this if you can check it out which validated my thoughts on this whole condition I'm not there yet but on a dmard sulphalazine really helped but now affecting white blood count so have to look at other options This dmard reduced the nerve pain 70 per cent so I know its auto immune issues causing it
I also have all the symptoms and was recently told that the lip biopsy and other tests are benign. I am going for a second opinion at a second rheumatologist.
I have not been diagnosed, but I have suspected Sjogrens for a long time. My main symptoms are arthritis in hands and shoulder, pain in salivary glands, numbness, tingling, pain in sinuses (this is the worst one for me), cavities all the sudden (dry mouth?), panic attacks, and more. I have been diagnosed with graves and raynauds and peripheral neuropathy. I’m scared of the lip biopsy. My bloodwork is normal.
I have Primary Sjogren's Syndrome. I was diagnosed with a lip biopsy. I developed SEIZURES, lactose and gluten intolerance, roller coaster blood pressure, chronic tendinitis, carpal tunnel, DRY JOINTS, BRAIN FOG! That's just a part of my list. I also have an enlarged heart and chronic kidney disease, chronic skin allergies and yes, let's not forget hair loss.
Wow interesting because I've been told twice by doctors that they saw me having seizures while I Fainted, and I've always been confused because I don't have a history of seizures and because it didn't show on my mri or CT scan they ruled out it was seizure at all. But I'm now wondering if Sjögren’s does cause seizures and that I actually did have seizures because I was recently diagnosed with Sjögren’s.
I lost my eyebrows, leg and arm hair years ago. Had dry eyes/ mouth. Constant low fever and fatigue and difficulty swallowing, especially first meal in the morning. Finally figured it out with researching symptoms for weeks last. Have had vertigo so bad unable to stand up. My bloodwork was normal for SSA/SSB but I know I have it. My Primary Dr. is finally giving me the referral to a rheumatologist I requested. I’m still waiting for it 2 weeks later. Drs. I’ve seen for this seem angry I’ve figured it out and have tried to inform them about it. I signed up to be a Sjogren Ambassador on the SS Foundation website.
My first VA Neurologist told me my symptoms (dry eyes and peripheral neuropathy) were caused by Sjogrens. He told me to find a Sjogrens support group. He left the VA and though all my Sjogrens tests (blood, saliva and salivary gland) were negative. He had told Medicine does not know much about it yet. So no other VA doctors accepted that diagnosis. Yet, I have a VA allergist. And, I get Mast Cell modulator meds and Omizalamab biological injections monthly. I also get allergy spray and eye drops for Mast Cell modulation. Well, and I am in an EEG lab in the local university hooked up to test if I have seizures.
I am a man with Sjögrens and Non-Hodgkins Lymphoma (CLL). One if not both of these diseases is destroying my eyesight and has left me with chronic pain and fatigue. Also struggling with splenomegaly and kidney issues.
I'm sorry to hear that! I find it more helpful to focus on adding helpful foods rather than eliminating foods. It's definitely a grieving process to lose the ability to eat certain foods and you are not alone!
Refresh Celluvisc and restasis (I use an off brand) have helped a great deal. I also have plugs in my tear ducts. I have very dry eyes. I can’t wear eye makeup. I usually end up using lipstick only and blush if I’m going somewhere special. My skin is so pale I feel so unattractive now (55). I’ve had autoimmune (I know I’ve have sjogrens since I was 24. Most of my symptoms went away until about 6 years ago. I have very bad pain my right hip and now use a cane. I can still barely walk or stand long. I’ve tried to be active throughout my life so this sucks! I’m in bed many days. I am finally working on getting diagnosed. I have to see many different doctors which is fun…not! I’m depressed. I’m hoping I can get healthy enough to at least walk and do some PT. My poor husband. Thank you for this information. Are there support groups around? Sjogrens is not well known so I wanted to ask. I haven’t researched yet. I’m in a brain fog period so I hope I’m making sense 😊. I’m scared about the cancers I can get. I already have a 33% chance of getting breast cancer. My husband’s wife died of lung cancer so I couldn’t stand for him to deal with this again.
I’ve had the hip problem for over ten years. I did a test I ordered online because I have so many food intolerances, and it showed a vitamin e deficiency -that can cause muscle and nerve pain, among other things. I’ve been taking water soluble e for several months and it helped my hip a lot. More than anything. Something to check for that doctors don’t know about.
do steroids help an what side effect, I am positive with dry mouth but dizziness which could be other issues too. or does one get the virus in the vestibular nerve b/c of the sjogrens? also neck issues...headaches and anxiety
Important ro mention that first signs can be like me nerve pain ie small fibre type in arms legs feet hand trunk and face . Also autonomic nerve dysfunction affecting heart rate bp and sweating for me. Also pots connected it me Dusautonomia international explains this can be the first symptoms before dry eyes etc This is vital to know as they can come earlier sme don't have drynes for years but start with autonomic system issues which in my case have been severe
My VA Neurologist diagnosed me, being seronegative, with Fibromyalgia, Sicca and possible Sjogrens in about 2011/2. VA doctors have done everything under the sun to prove i dont have Sjogrens. Yet, I get Mast Cell mediators for sinuses and eyes and biological injections for allergic asthma due yo high blood histimines. Basically, my VA eye doctors and allergist (whom i had since 2011/2, treat me with a lot of same meds as Sjogrens..
Hi!! You started to mention that you use a serum on your lashes for growth that also helps with dry eyes, but then you kinda moved into another subject. Would you mind sharing what that serum is? Thank you.
Your video is very beautiful. I like it a lot. I have been trying to talk to you for a long time. I am waiting for your response. Please give me a chance to talk to you💚👌
I was diagnosed with SS in 2005, but probably it started years long before that date. I am seronegative but high rheumatoid factor, now developed non Hodgkin's lymphoma since 4 yrs that did go away till now even with chemo & radio. I never take plaqnil. I wonder what natural remedies that can help both SS and lymphoma!!! I am on vit d, omega 3, royal jelly and propolis, did a lot lifestyle and diet changes. What ekse can help without further costs?? I am from Egypt
I'm so sorry to hear you've been through so much. I don't know any supplements that work for SS but for my rheumatoid arthritis, exercise, prioritizing sleep and managing stress have been really helpful. They alone don't put my disease into remission but they can help reduce symptoms
I found a fairly strict carnivore diet very helpful in getting remission from many of the more irritating symptoms like ibs, skin rashes, arthritus, fibronurealga and pots.
Thank you for this discussion. In June 2006 I started feeling terrible ie brain fog, fatigue, nerve pain, cramping, Raynauds and the classic “felt like something was stuck in my throat” lol… and 4 years later I was diagnosed with Lupus. Nothing showed up in blood work, MRIs, Xrays, CTs, or countless specialty dr visits. That entire experience in and of itself was horrific, demoralizing and insensitive to say the least. My mother in law at that time was a well respected practicing primary care physician and she even thought I was crazy.
Funny thing is I was being in vain about my hair texture changing and it got me a visit with a dermatologist. It literally was a blessing in disguise as he discovered the culprit and that is how and when my lupus journey started in Aug 2010. It took about 3 months to start feeling better once the medicine kicked in. I went into remission for the most part with a few hive like rashes here and there - it was bliss. Sadly I had learned how to live with permanent brain fog since June 2006 so I don’t count that… LOL.
And then in 2019 my blood work indicated I had Sjogrens and my rheumatologist suspected I had Sjogrens all along and was misdiagnosed because I didn’t report “dry eyes”. Nonetheless the Hydroxychloroquine I was taking for Lupus worked for Sjogrens so my Dr wasn’t too concerned. I will say since the official Sjogrens diagnosis, I have progressively regressed and am completely out of remission. The arthritis is a beast and sneaky LOL. But the absolute worst are fatigue, joint pain throughout many upper and lower extremities, nerve pain, night sweats and daily headaches.
Although I have a wonderful family practice dr who tries to investigate my concerns as my rheumatologist has resigned to “it’s expected with people who have your health conditions” (I’m like um… o k a y), I have decided to leave it all in God’s hands and accept it as a thorn in my side! I’d rather be closer to God than go through another cycle of torture trying to prove “something else is going on” LOL. I know my body and it’s definitely not the same Lupus Gal or even her Sister Sjogrens. So many other weird, unexplainable things are happening ie come & go rashes, pulsating eye, back pain, irregular periods yada yada… with the classic your blood work is fine minus your flared up Sjogrens and Lupus markers. So it is what it is and I’m grateful to be smiling and moving right along without the Methotrexate & Prednisone and whatever else oh folic acid 😂. I’m just over the multi-meds man! It’s just me and Hydroxy….quine for the long haul my friends.
It’s a struggle for us autoimmune disease carriers because we look fine on the outside and heaven forbid if you are cute, but in fact we have a whole lot going on internally that isn’t in plain sight. Anyway I don’t share about my health but tonight I felt the need and I hope it helps someone to know you’re not crazy or alone. I pray everyone finds the right path, respectively, to a plan that works towards improving your overall health, being in long-term remission and/or fully eradicating this terrible disease ❤.
I am 76 and have had Primary Sjogren's for many years. A tip: daily mild exercise will help the headaches and other pain. I must stress the word mild.
Thank you so much for sharing your story, I'm so sorry to hear you're out of remission now and I hope you can find relief soon!
@@ArthritisLife Thank you so much!! God is good all the time and I’m still joyful. I appreciate you/your channel and your kind words ❤️.
@@brendaf3132 Thank you so much! Mild is exactly right and bless you ❤️.
Yes, absolutely! People will say, "you don't look sick"...or the infamous, "you're too young to be having all that pain." Sharing your story may help someone else going through one or many of these autoimmune conditions. Keep praying and remember: He won't give you more than you can handle. ❤
I was diagnosed with Sjorgrens in 2015 from a lip biopsy. I also have Small Fibre Neuropathy. I choose not to be on the meds and use food as pharmacy. I find the meds scarier than the disease.
Thank you for sharing, the meds do work for many people but of course it's not a guarantee for any one individual, best of luck to you!
I am 64 and I am off all of the meds except for my opiate three times a day because I've had three back surgeries and a neck surgery so I suffer from chronic pain as well as Sjogren's. They work. I also consume no sugar, and I eat a ketogenic diet, and I think that helps me. But I hurt. It's just life.
I’m concerned about side effects
What are the side effects of the meds,used for Sjogrem’s syndrome ?
Can you explain the reason for a lip biopsy? Thank you 🙏🏻
I wish that the organs that sjogrens can damage was talked about more. Sjogrens caused pancreatitis for me, and it’s chronic. Lungs aren’t doing well, losing my eyesight and have severe esophageal spasms.
I'm so sorry, and I agree, Sjogren's is a much more serious disease than most people realize. I hope you get some relief soon!
Betty, I had no idea Sjogren’s could cause so many health issues. I haven’t been diagnosed as yet, but have a few of those symptoms, like dry eyes lips exhaustion pain being the worse. Thanks for sharing, I’m happy to find this video, thanks to these lovely ladies.
❤❤❤❤❤May the Good Lord Almighty bless you and keep you and may His light shine upon you. Trust in Him with your whole ❤
I suspect I have Sjogrens, my Rheumatologist clinic is no longer taking my insurance due to the DSHS supplement ( on Medicare) so now have no Rheumatologist after 25 years
I was diagnosed with fibromyalgia in 1997 and Sjögren’s in 2007. I have severe dry eye; taking Restasis and Xiidra with little success. I moved to another area and changed my eye doctor. My new Dr did a therapy to reverse dry eye. It is called low level light therapy. I did three treatment sessions and now don’t use drops at all. Not everyone knows about this treatment and am so very happy this it found me.
Would you recommend me the low level light therapy?
I'm glad you found something that works! I haven't tried it yet but will ask my opthamologist next time I see them.
I would recommend asking your doctor about it if you're interested!
I’ve heard of this treatment, but was told it would help
Hola, hello beautiful world God Almighty bless all ❤️Thank u yes ,I have not been diagnosed,but I strongly believe I have it I beyond the meds God bless all especially people with health issues ❤️
Thank you for your kind words!
These videos are SO helpful for me! I was just diagnosed with Sjogrens, RA and fibromyalgia. I just started taking methotrexate and folic acid, and I've been taking pilocarpine since diagnosis 2 months ago. I've been taking omega 3 for quite a long time because I've had dry eyes for a few years. I think I was in denial for a few weeks, but now I'm beginning to come to terms with all of this. I also have type 1 diabetes. I've been on a whole food plant-based diet for the last 7 years, and I think that has been helpful for me. I also live in the Seattle area! THANK YOU for your videos!!
It's so nice to meet you and hear that you are doing pretty well with your current treatment plan! Being in denial is absolutely a normal part of the process, I still go into and out of denial about aspects of my chronic illnesses even now, 20 years after my first diagnosis! Hope you are doing well in the cloudy long weekend we're having in Seattle!
Be careful of methotrexate, a low dose chemo. I was given it for RA. It made my saliva so acidic that it caused the destruction of numerous teeth.
Leaky gut tends to be part of autoimmune. I have been working on my gut health. I also dont have a gall bladder so i look for ways to increase digestion so i absorb more nutrients. In the past few months i started with the dry mouth and eyes. :( i have been able to keep my thyroid function in range (graves into hashimotos) i have been gluten free for 15 years. The past few months my energy has improved with benfotomine and multi Bs.
So true autoimmune conditions travel together. Their symptoms are similar too.
Thank you for the info!
Thank you for sharing what has worked for you!
Your right! Great job taking. Care of yourself ❤
My journey is eye inflammation, severe, got diagnosed with dry eyes. Then came the inflammation of the Bartholin gland that eventually (after 5 drainages and a lot of antibiotics and the whole process) ended up in removal surgery, then cystic acnee out of nowhere with inflammation and infection and now, a month after I finished with vitamin A treatment (accutane) I have a bump in a breast. I'm seeing the doctor tomorrow, so I'm not waiting.
On top of that I have Hashimoto's, rheumatoid arthritis, psoriazis, some form of neuropathy on the right side of my body.
I have lost a lot of weight 15 years ago and never gained any, even with two pregnancies, I have excesive bowel movement.
And yes, fibromyalgia was thrown in the dialogue. A lot of fatigue, a lot of brain fog, I get "404 errors" a lot.
But I am finally getting answers for all of my simptome, after years and years of "maybe it's all in your brain, you are imagining things". Meanwhile I am struggling to get out of bed in the morning because of the pain.
I did change my schedule: 8 hours of sleep, rest during the day, trying to eat, taking my thyroid meds on time, making lists, asking for help!!! I think that is the most important thing I did: I started to ask for help for daily stuff.
This talk helped a lot. It's telling me I'm not alone actually and it's not in my head. It's pretty busy up there already 😅
Thank you so much for taking the time to share your story and your response to this episode, I'm sorry to hear you've been through so much but I'm happy to hear that you are feeling a light at the end of the tunnel and that our chat helped!
Never feel alone. There's alot of us out there suffering with these diseases. Also some great Sjogrens Facebook groups.
I am in the 40% who has negative SS antibodies. I was already disabled due to many fusion spine surgeries. I went to the rheumatologist hoping for a non radiographic axial spondyloarthritis diagnosis bcuz I just feel my immune system attacking my spine but I came away with a Sjogren's syndrome diagnosis. Of course he called it secondary bcuz I was diagnosed with Hashimoto's in 2015. I like that he was progressive enough to diagnose even though the antibodies were negative. But he only worked on finding an NSAID for the polyarthritis pain. A year later I finally asked for HCQ. HCQ takes a long, long, long time to start seeing therapeutic results, 6 - 12 months. I had to titrate dosage to the full dose. I've been at the full dose 4 months and it has slowly helped but I was pretty much Bedridden. I'm still expecting more therapeutic results in the next 8 months 🤞
I will be gently crossing my fingers that the therapeutic results continue over the next 8 months!
The best way to understand sjogrens is to feel how dry the inside of the mouth of the person with sjogrens it would blow your mind Sometimes you think your goning to go off the deep in and go mad.
Sending support your way!
No joke. I didn't realize how important saliva was until I had so little. The constant dryness.
@@1corinthians-138 agree totally. My worst symptom together with swallowing/choking....All food has to be blended...😢
My eyesight is nearly gone. Have Blood behind the retina . GreaT dental hygiene throughout my life . All of my teeth are chipping falling out . I have RA. PSA, Fibro, small fiber neuropathy. IBSD .
My symptoms didn’t start until I was in a car accident and had to have an ACDF a surgical procedure with cadaver bone and titanium Plates . Wonder if there’s any correlation to the cadaver bone or titanium plates?
Multiple Sclerosis and Sjogren’s and other autoimmune disorders. (IBS,Diabetes, arthritis, lung damage from a chemical, so on oxygen 24/7)… no one ever told me anything about Sjogren’s other than it was responsible for my very dry eyes and mouth. That’s it. Finally finding out about everything else Sjogren’s causes has finally taught me about the reality of it and made so many things make more sense.
I’m late to your party, but great to find more coming online. ✌🏼💜
I'm glad you are on the road to learning more about your Sjogren's and I hope you have some relief soon!
This is interesting as everyone is different because the opposite works for me. I’ve been on a carnivorish diet with lots of red meat and raw dairy and my blood work shows I’m in remission. My doctor said it’s like I put it to sleep. I feel better and stronger.
It's really great when you can find something that works for your body. The nutrition / dietary change aspect of things can be so confusing because there's a giant variability between what works for one person versus another - like you said, plant based works for some people while carnivore works for others. It's hard to be patient with all the trial and error. I'm glad you found a dietary plan that work For me with RA, I would just be sure to check in with my rheumatologist and cardiologist about the safety of the carnivore diet due to the increased risk of cardiovascular disease with rheumatoid arthritis.
What blood work specifically shows remission cause my doc never says if I'm in a flare or not although I feel and know I am and it hasn't let up. Hydr...has helped with the fatigue but the pains is a mix of joint muscle and then my neuropathy.
Me too.
Can anyone tell me if they experience a lot of feeling chilled. When it's not cold
I'm sorry to hear that! Temperature dysregulation can happen with most autoimmune illnesses
Yes
Id give up the kombucha. I was drinking too much of it and it set off a lot of symptoms.
Thank you for sharing!
My cataract eye doctor actually said to me last week: "Oh, you women always worry that your makeup is the problem." He's barely familiar with Srogrens.
That is so inappropriate, I'm sorry you had to deal with that!
Yikes.
When getting a cataract operation I found Sjogrens an unknown word to the eye doctors.
I have all these symptoms.
I hope you get some relief soon!
Thank you for this
I’m hoping to get a diagnosis finally. 9 years in. I have moments where I’m having flares and tons of symptoms and bloodwork and then not as bad. Looking for Rhematologist #3
Gently crossing fingers for you!
Just found out that I have sjogrens syndrome today from my rheumatologist she called me at work bout my results
Please know you're not alone, I hope you can connect with the Sjogren's community online and get support!
My joints started popping a lot, which I don’t understand. The pops are usually painless but very strange feeling. When my lower back joint pops, my hip starts hurting. Any ideas? I don’t understand all my tests-I had 3 ANA blood tests that are positive, low white blood cell count and a bunch of other abnormal test results. I saw a fibromyalgiarheumatologist and she was absolutely horrible! She knew nothing! I go to Hopkins but I’m not able to see a rheumatologist until March 2024. However, my new primary seems excellent and understands. She’s sending me to a bunch of different doctors and a sleep study. Oy vey! I just want them to tell me they also believe I have sjogrens and if they think anything else is going on. Sorry for writing so much, I’m so overwhelmed and tired. I have a long list of nutty symptoms as I’m sure we all do. I apologize for being negative.
You're not being negative, you're expressing the reality of what you've been through. I'm so sorry, and I am so glad that your primary care is proactive. Rheumatologists differ greatly regarding how willing they are to consider diagnosing based on symptoms alone versus boodwork and other more objective test measures. Crossing fingers (Gently) for you!
Thank you. I found this extremely helpful. Another piece of the autoimmune jigsaw. 👍
I'm so glad it was helpful, I agree it's definitely like putting together a jigsaw puzzle (where the pieces sometimes change shape as you're putting it together!)
Hi Cheryl, I would love for you to do a video on how to not fall for a wellness scam. I almost got pulled in a few times with the doctors on TH-cam. And some of them can cost thousands of dollars. What supplement was Dr. Wada taking that caused liver damage? I hope it’s not turmeric?
Yes, that's a big issue where people who are desperate fall for those "you can be cured by sending me money" scams.
Absolutely! It burns me to see such people taking advantage of people who are suffering. My habit is to practice what I was taught; always look for the vested interest. If they can make money out of their message don't trust it.
Agreed. It's so easy to fall victim to the scams bc you just want relief and then they make it like it's healthy and natural.
😅😅😅😅
I have just feewdays back a medical emergency, with thrombocythemia, with sjogren Disease!!! My Blood platelets was just 0. I was having a Cortisone Therapy. Again after one week i need to return back to hospital....
I'm so sorry, that sounds really painful and I hope you get on a good treatment plan soon!
Have you ever been on n-plate? I have lupus and have issues too with low blood counts..really bad years ago and n-plate got my platelets up.
Could you share the products you mention and links? The make up, the lash serum etc
No kombucha is not carbonated. The bubbles come from fermentation. Excellent for your health in every way if you consume the ones with low sugar .
Thanks for sharing!
Can you share recommendations for makeup and eye drops?
I find that the preservative free vials work best for me, Systane brand is my preferred one but I know others like Refresh!
twenty/twenty is a collection of products designed by a board-certified ophthalmologist to help enhance the natural beauty of your eyes while keeping them healthy.
Thanks for sharing!
I am in rheumatology clinic almost 20 years now. They said blood test is normal
I hope you get some answers soon!
Doesn't always show in blood but raised esr common .
Doesn't always show in blood but raised esr common .
I was diagnosed 20 yrs ago with sjogrens fibromyalgia nerothopy being a immunologist I've had test n my histamine attacking me to swelling up on my eyes lips swelling up so bad on 720mg aday of fenafexldin got RA mixed connective tissue disease pituitary tumor eds macrosisi my red blood cells are huge I find it hard to breath on standing to long my blood pressure drops I go pale head woozy n all I see is white through dry mouth here lost all my teeth dry eyes I can't see to drive at night n my eyes leaking and stings along with RA I got osteoporosis aswell I've had steroids injection in my knees did nothing got 13 bulging discs 3 are in neck L5 disc and S1 disk is sitting on each other got no entrance or exit in nerve thst when standing 10 mins im crippled just diagnosed with inflammation of bowel I have urine n sometimes bowel incontinence yous probably won't see this comment as this pod is a year old
I can't even get a dr to think outside the box...i know i have Ehlers Danlos and POTS and nearly every symptom y'all listed.. many of which do not fit w EDS. Currently the weight loss, fatigue, brain fog and pain in my hands is severely impacting my daily life. I have negative RA and none of the antibodies.. bc of that i get dismissed and no further testing is done. What are the magic words to get taken seriously?
I'm so sorry, I think it might be helpful to reach out to other patients in your area who have EDS and POTs and see who they recommend for diagnosis and treatment, it seems to vary drastically depending on who you see! The nonprofit EDS society might also have some recommendations www.ehlers-danlos.com/
Hi. Recently diagnosed with Sjogrens Syndrome with severe dry eyes, mouth skin. Gastritis, h-pylor infection with IBS with eating certain foods. Told by the Rheumatologist to keep away from all flour products and to take fish oil with omega 3. No other treatment given so far. Should I be on hydroxy...quin too?
Ophthalmologist assessed my eyes for plugging the tear ducts also.
Hi there, if the current plan your rheumatologist recommended isn't working well it's always a good idea to check back in with them and see what other options might work for you, including potentially medication! I hope you get some relief soon!
My sjögren focus score is 6, does the risk of lymphoma increase as the focus score increases?
am 24 years old, I have Sjogren's and Hashimoto's disease, I am afraid that I will have lymphoma. My symptoms have progressed in 2 months, I had an intense stress period, the disease progressed
there are articles like those with lymphoma live less than 3 years because of sjögren it's scary
I would ask your rheumatologist as I'm not sure of the answer to that
What drug caused the liver injury?
Dr Wada did not want to mention the supplement that caused the liver injury by name, I don't know what it was. Thank you for asking!
While there is good information it is extremely distracting when you are constantly interjecting into the guest’s presentation and going off on a tangent. Sorry to be so blunt🥴
No worries, I understand the feedback, I am working on it :-) Fortunately the podcast has had over 100,000 downloads in 3 years so it doesn’t seem to deter everyone from listening, but I understand how it can be distracting! Luckily there are lots of other podcasts to choose from if you don’t like mine, including Dr Wada’s own podcast which is excellent!
I observed this too. Hard to concentrate on discussiion and not a calm conversation.
What meds dk yu use?
Hi, I'm on Xeljanz and Methotreaxate currently for Rheumatoid Arthritis
I have been labeled with fibromyalgia. I have seen a rheumatologist and she says I do not have Sjögren’s. My primary thinks I do. I believe I have Sjögren’s. Somewhere do I go now?
Try another rheumatologist to have a second opinion about if you have S’Jogren or not
Agree with this idea, a second rheumatologist opinion can help deduce what's going on, I'm sorry you don't have diagnostic clarity at the moment!
I had a positive ANA. An extended panel was done and the centromere was high. This indicates Sjogrens. Find the right doc.
I am sure I have Sjögren’s syndrome, but doctor said no
It's always OK to get a second opinion!
I had a negative ANA and negative ssa and ssb but have all the dryness symptoms and low blood pressure and diastolic dysfunction in the left ventricle and brain fog. I also lost a bunch of weight but put it back on. If all the blood tests are negative i wonder what my likelihood of having sjogren's is
Sending lots of support your way for relief!
My eye doctor & dentist thought I had it 20 years ago. Just diagnosed at 54. I would have rather known 20 years ago. I would still have my teeth. 😫
I'm so sorry to hear that, I wish you had gotten your diagnosis in a more timely manner!
So what were you starting to say about the ears. Pain in the ear?
Hi there, I'm sorry I'm not sure which part you're responding to, can you let me know the timestamp? Thanks!
What is the name of the serum Dr Wanda uses that helps her dry eyes; originally made for dry eyes but incidentally grows eyelashes? I have severe dry eyes and neither restasis or Xiidra is enough. Thank you so much! I enjoyed the video.
Hi there, I will ask her and get back to you!
@@ArthritisLife Thank you!
The name of the serum Dr. Kara mentioned was Growing Lash & Brow Serum from Twenty/Twenty Beauty.
She actually has a 20% discount with them if you use the code "crunchyallergist" if you purchase!
@@ArthritisLife Much appreciated Cheryl! I will take a look at it.
What's the best eye drops for this ? I'm on restasis daily. I have tried every eye drop for dry eyes there is .keep 3 on me at all times ! Dry eyes and mouth are the worst. I go through 4 biotene lozenges a night on nightstand
Have you considered the whole food plant based diet that Dr Brooke Goldner has? I’ve found some very positive changes in my body and autoimmune diseases by following her protocol.
Hi there, I am not a candidate for that diet. I follow the American College of Rheumatology's recommendation of the mediterranean-based diet plus the recommendations of my registered dietitian as I have other GI issues that dictate what I can and can't eat. Glad to hear you've had positive changes with changing your eating patterns!
Years ago a dentist had business cards from the Sjorgrens Syndrome on her front desk. I looked up information because I was having dry mouth and eyes. My primary doctor agreed to test my sed rate which was high. I saw a rheumatologist and was told I have the Rheumatoid factor and Sjorgens autoimmune disease. I use eye drops and have the dry eyes under control (usually). I always have a water close by when I eat. Teeth not in great shape but what I have I use a waterpick after I eat (when I can) I’ve suffered from facet syndrome for 2O years. I am fortunate to be able to receive PRP or prolotherapy when I have facet flares. (Never easy to heal from treatments) at times I get a few weeks of relief. I’m thinking of going back to my rhematogist to possibly start a medication. Reluctant but Hopeful) 🙏
Thank you for sharing and I hope that your rheumatologist has some good ideas, I believe there are some new treatments on the horizon for Sjogrens!
I use a waterpick after I eat too
Finding a doctor to treat my Sjögren’s seems to be impossible. I have moderate neurological involvement, dryness, no salivary output, severe dry eye, autonomic disfunction, and gi involved. Also, low igg. Anyone think an immunological eval would be worthwhile since I can't find a rheumatologist in Seattle area who will see me? (Mine turned into a jerk with this diagnosis 😢)
I'm so so sorry to hear that. I see Dr. Gorman at PacMed, Seattle, and she's been wonderful, I would recommend her.
How about the Ana test?
I was recently diagnosed with secondary sjogrens (with SLE). Last year, I started experiencing chronic constipation and severe dry mouth. I developed Reynaud’s in November last year. I can’t sleep, I have daily headaches, I’ve started itching like crazy all over my body and it’s like a flare of a rash that turns my body red and it feels like it’s on fire. I’ve also had POTS symptoms for well over 10 years but I can’t get a diagnosis for those symptoms. I don’t know if this itchy thing is due to any of my autoimmune issues!
I'm so sorry to hear that! I know that itching is sometimes a medication side effect, it could also be from the dryness
Mast cell activation also connected to sjorgens I have this combo and it causes itching
?????Hello, I have veen diagnosed with 1ST Lupus (only + ANA), negative on Sjogren's, have horrible diarrhea often, dry eyes IOW all over the board, last dx is MCTD, UMCTD.. I was treated with methotrexate injections for >2 years. ( I suppose they are really the same.) Many other terrible symptoms over the years. Latest problem and my QUESTION: experiencing loss of balance. Can the autoimmune conditions cause this????? BTW: my rheumatologist has retired and moved --noone took over her practice. LOSS OF BALANCE is my main concern. Have had MRI which is normal.
Thank you for this zoom and any help is appreciated.
I'm so sorry to hear you've had loss of balance. It's not one of the common symptoms of autoimmune illness that I'm aware of, but it could be a secondary symptom especially if you have any involvement of your inner ear, which is where your vestibular center is located (your vestibular sense is involved in maintaining your sense of balance). I hope you're able to find a new rheumatologist soon and can get some answers!
Thank you for sharing your journey.
It seems these autoimmune are an end game..: in my own opinion… possibly stemming from an underlying connective Tissue disorder such as Ehlers Danlos Syndrome or some such connective tissue disorder without a name.
Then in waltzes Mast Cell Activation, MCAS and POTS Postural Tachycardia Syndrome… the classic trifecta.
Then, in my opinion becomes a full house when you add the developmental Autoimmune due to the signaling of threat from external to internal & add neuro development changes they get labeled Autism to the trifecta. Then you have the full Full House lay those cards down on the table and walk away.
1) Ehlers Danlos Syndrome (connective Tissue Disorder genetic pre-existing)
2) Mast Cell Activation as a result of the body brain feedback loop sending threat signals due to the loose connective tissue. It assumes all things introduced into its environment… all thing introduced outside and inside the body as a threat because the the brain is getting a signal of threat due to the failing connective tissues signaling the brain something isn’t ok. There. That.
3) Postural Orthostatic Tachycardia due to the same signaling due to the connective Tissue Disorder. Same rhyme… same song same reason as MCAS… signaling I’d threat loop due to connective tissue issues.
4). Autoimmune… when the Mast Cells discern the threat is within itself due to these environmental thing from without becoming part of the blood, brain, tissue crossing the barriers due to the weak connective tissue issues pre-existing.
5). In a young developing brain this dynamic is going to look and present as Autism. What we call autism. A heightened sensory due to a body and brain developing in heightened alert mode due to a connective tissue issue making the body fail and sending threat signals to the brain and keeping it in hyper arousal or shutdown all the trauma responses presenting… flight fight freeze fawn.
In my opinion it’s ALL the normal response of a brain and body to a connective tissue FAIL
Yes... Lupus can effect the nervous system. Talk to your Doctor maybe he can prescribe something for it.
Oral probiotics will help prevent so many dental cavities
Thank you for sharing!
what is an oral probiotic?
Have you tried xylimelts? I use these at night.
It is pronounced sher-grens
I think different people pronounce it different ways but thank you for sharing! th-cam.com/video/p4Wm8VYGNB4/w-d-xo.html
Show-grens dear.
It would be very helpful to know which supplement caused her liver inflammation.
Great question, I will ask Dr. Wada!
Could it be, Wormwood?
how do you get a doctor to give you hydroxycloriquine i have RA and Fibro I lost all my teeth and i have diabeties heart problemes i need a double knee replacement and my eyes are terrible and cornea is damaged i could just cry
I'm so sorry, I would get a second opinion from another rheumatologist if you aren't happy with your current treatment plan
too much pain dry eye and mouth and LS too
So sorry to hear that, I hope you get some relief soon!
I have SS and I stopped wearing contacts years ago because they began irritating my eyes, so now I wear glasses full time.
I also avoid contacts due to dry eyes!
Same 😔
Hi Cheryl.. was wondering if you would cover a bit on Psoriatic Arthritis which is not a well known autoimmune as RA. I have PsA 💜.
Absolutely, that's a great idea! Thanks for suggesting it!
@@ArthritisLifel
I have dry mouth and dry eye and dry cough. Sero negative, lip bx negative was deemed negative but showed atrophy and chronic inflammation. Where should I turn next? I also lack sweating and have PN
Hi there, I'm sorry you don't have any answers yet! Have you been evaluated by both a rheumatologist and an opthamologist?
Yes I have. The rheumatologist was horrible to me and wasn't interested in my history. She kept asking me why I had to know and that she would not treat me any differently if blood tests and bx were negative. My pulmonologist asked the same question. I've had dry eyes for 10 years and dry mouth x 1 year. The dry mouth is debilitating. I cannot sleep. Now I have been diagnosed with oral lichen planus. The opthalmologist feels I do have an autoimmune disease.I feel lost. No one is helping. You talk about fatigue and it is horrible. I get very hoarse, have a dry chronic cough. I had to retire because I could not continue speaking on the phone. I am an RN. I was dx with sarcoidosis about 8 years ago, from a positive colon bx during a colonoscopy. My pulmonologist has dismissed my problem with coughing and does not feel I ever had sarcoidosis. I even have to leave a restaurant because of a cough...Embarrassing. I am up several times a night due to cough and severe dry mouth. Would a saline updraft help? Also, I have read that you can have PE with Sjogren's. What is your experience with this? I had unprovoked PE in all lung fields in Dec. 2016 with new onset Afib. Would you dx someone like me without sero-positive results? I also believe the lip bx was done incorrectly. He only obtained 1 bx. Thank you. Ruth Pierce
I'm also neg for the auto antibodies which you can be with sjogrens . You have the features. Y need a new rheumatologist who is an expert in sjogrens It is hard to diagnose but if they treated you and you improved this may show you have this. You are not being treated with respect. I have nerve pain which is a more severe sign ie autonomic neuropathy too prior to dry eyes. Dry nose and dry private parts. Mine has also started mast cell activation now . Dysautonomia International on TH-cam have some brilliant videos about all this if you can check it out which validated my thoughts on this whole condition
I'm not there yet but on a dmard sulphalazine really helped but now affecting white blood count so have to look at other options
This dmard reduced the nerve pain 70 per cent so I know its auto immune issues causing it
Hi. I had a question. Has anyone had lung nodgels to to sjogren's symdrone?
I have sooo many of these symptoms and great bloodwork🤔 many Drs and no answers
Me too so far! 😢
I also have all the symptoms and was recently told that the lip biopsy and other tests are benign. I am going for a second opinion at a second rheumatologist.
I have not been diagnosed, but I have suspected Sjogrens for a long time. My main symptoms are arthritis in hands and shoulder, pain in salivary glands, numbness, tingling, pain in sinuses (this is the worst one for me), cavities all the sudden (dry mouth?), panic attacks, and more. I have been diagnosed with graves and raynauds and peripheral neuropathy. I’m scared of the lip biopsy. My bloodwork is normal.
I'm so sorry to hear this, I hope you get some relief soon
I have Primary Sjogren's Syndrome. I was diagnosed with a lip biopsy. I developed SEIZURES, lactose and gluten intolerance, roller coaster blood pressure, chronic tendinitis, carpal tunnel, DRY JOINTS, BRAIN FOG! That's just a part of my list. I also have an enlarged heart and chronic kidney disease, chronic skin allergies and yes, let's not forget hair loss.
Thank you for sharing and spreading awareness, and I'm so sorry you've had so many different challenges beyond dry eyes
Wow interesting because I've been told twice by doctors that they saw me having seizures while I Fainted, and I've always been confused because I don't have a history of seizures and because it didn't show on my mri or CT scan they ruled out it was seizure at all. But I'm now wondering if Sjögren’s does cause seizures and that I actually did have seizures because I was recently diagnosed with Sjögren’s.
I lost my eyebrows, leg and arm hair years ago. Had dry eyes/ mouth. Constant low fever and fatigue and difficulty swallowing, especially first meal in the morning. Finally figured it out with researching symptoms for weeks last. Have had vertigo so bad unable to stand up. My bloodwork was normal for SSA/SSB but I know I have it. My Primary Dr. is finally giving me the referral to a rheumatologist I requested. I’m still waiting for it 2 weeks later. Drs. I’ve seen for this seem angry I’ve figured it out and have tried to inform them about it. I signed up to be a Sjogren Ambassador on the SS Foundation website.
My first VA Neurologist told me my symptoms (dry eyes and peripheral neuropathy) were caused by Sjogrens. He told me to find a Sjogrens support group. He left the VA and though all my Sjogrens tests (blood, saliva and salivary gland) were negative. He had told Medicine does not know much about it yet. So no other VA doctors accepted that diagnosis. Yet, I have a VA allergist. And, I get Mast Cell modulator meds and Omizalamab biological injections monthly. I also get allergy spray and eye drops for Mast Cell modulation. Well, and I am in an EEG lab in the local university hooked up to test if I have seizures.
I am a man with Sjögrens and Non-Hodgkins Lymphoma (CLL). One if not both of these diseases is destroying my eyesight and has left me with chronic pain and fatigue. Also struggling with splenomegaly and kidney issues.
Tired of adding foods I cant eat to the list. Sometimes I cry in the grocery store.
I'm sorry to hear that! I find it more helpful to focus on adding helpful foods rather than eliminating foods. It's definitely a grieving process to lose the ability to eat certain foods and you are not alone!
Me too.
Refresh Celluvisc and restasis (I use an off brand) have helped a great deal. I also have plugs in my tear ducts. I have very dry eyes. I can’t wear eye makeup. I usually end up using lipstick only and blush if I’m going somewhere special. My skin is so pale I feel so unattractive now (55). I’ve had autoimmune (I know I’ve have sjogrens since I was 24. Most of my symptoms went away until about 6 years ago. I have very bad pain my right hip and now use a cane. I can still barely walk or stand long. I’ve tried to be active throughout my life so this sucks! I’m in bed many days. I am finally working on getting diagnosed. I have to see many different doctors which is fun…not! I’m depressed. I’m hoping I can get healthy enough to at least walk and do some PT. My poor husband. Thank you for this information. Are there support groups around? Sjogrens is not well known so I wanted to ask. I haven’t researched yet. I’m in a brain fog period so I hope I’m making sense 😊. I’m scared about the cancers I can get. I already have a 33% chance of getting breast cancer. My husband’s wife died of lung cancer so I couldn’t stand for him to deal with this again.
You are not alone
I can't wear makeup either without paying for it.
I’ve had the hip problem for over ten years. I did a test I ordered online because I have so many food intolerances, and it showed a vitamin e deficiency -that can cause muscle and nerve pain, among other things. I’ve been taking water soluble e for several months and it helped my hip a lot. More than anything. Something to check for that doctors don’t know about.
do steroids help an what side effect, I am positive with dry mouth but dizziness which could be other issues too. or does one get the virus in the vestibular nerve b/c of the sjogrens? also neck issues...headaches and anxiety
Pots symptom
Important ro mention that first signs can be like me nerve pain ie small fibre type in arms legs feet hand trunk and face . Also autonomic nerve dysfunction affecting heart rate bp and sweating for me. Also pots connected it me
Dusautonomia international explains this can be the first symptoms before dry eyes etc
This is vital to know as they can come earlier sme don't have drynes for years but start with autonomic system issues which in my case have been severe
Thank you for sharing!
My VA Neurologist diagnosed me, being seronegative, with Fibromyalgia, Sicca and possible Sjogrens in about 2011/2. VA doctors have done everything under the sun to prove i dont have Sjogrens. Yet, I get Mast Cell mediators for sinuses and eyes and biological injections for allergic asthma due yo high blood histimines. Basically, my VA eye doctors and allergist (whom i had since 2011/2, treat me with a lot of same meds as Sjogrens..
Hi!! You started to mention that you use a serum on your lashes for growth that also helps with dry eyes, but then you kinda moved into another subject. Would you mind sharing what that serum is? Thank you.
She shared it in reply to another comment asking.
@richardstevenson371 Oh, ok thanks!
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I was diagnosed with SS in 2005, but probably it started years long before that date. I am seronegative but high rheumatoid factor, now developed non Hodgkin's lymphoma since 4 yrs that did go away till now even with chemo & radio. I never take plaqnil. I wonder what natural remedies that can help both SS and lymphoma!!! I am on vit d, omega 3, royal jelly and propolis, did a lot lifestyle and diet changes. What ekse can help without further costs?? I am from Egypt
I'm so sorry to hear you've been through so much. I don't know any supplements that work for SS but for my rheumatoid arthritis, exercise, prioritizing sleep and managing stress have been really helpful. They alone don't put my disease into remission but they can help reduce symptoms
I found a fairly strict carnivore diet very helpful in getting remission from many of the more irritating symptoms like ibs, skin rashes, arthritus, fibronurealga and pots.
What abt BPPV vertigo??
I'm not sure about that, sorry!