Episode 2 - Living With Sjögren’s
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- Опубліковано 19 чер 2024
- A proper diagnosis of Sjögren’s gives patients relief that their symptoms are caused by something. Then comes the challenge of learning to live with this chronic disease, Sjögren’s, and all of its’ complications. This episode features current patients on the impact Sjögren’s has on their lives and how they are learning to conquer the complexities of living day-to-day with Sjögren’s.
This is so relatable.🙌🏼A diagnosis is definitely a relief, but also super daunting to hear that you have a “chronic” illness (a.k.a. with you for life🙃). Sjogren’s is SO MUCH more than a dryness disease and I am so happy you guys are advocating so strongly for that.💗
I agree. I'm so exhausted with this disease and tired from waiting on answers. This all hit me right after my acdf neck surgery. Besides everything else I'm now having to go get a CT scan for spot on my upper right lobe of lung. 😩
This is so enlightening! I have had undetermined autoimmune issues for the past 8 yrs. I am now 49. My neuropathy in my feet is horrible, balance is awful, my exhaustion....even while taking 4 meds to keep me awake is horrible. My arthritis pains have me needing prednisone at least once a month. The dryness in my mouth and eyes is so hard to explain to others. I feel like ppl think I am either exaggerating or making it up. I have not been yet diagnosed with anything other than neuropathy. But this is crazy and I often feel very alone,
Your rheumatologist allows you to have prednisone ONCE A MONTH?! Mine tells me that would certainly kill me. I’m lucky if I get prednisone once a year.
I hope you find diagnoses, treatment, and the right support from doctors and friends.
The medical profession need more knowledge of Sjogren's. I recently went to my GP surgery and was seen by a Physician Associate and when I said I had SS she giggled and said she had never heard of that one. She therefore did not understand why I was concerned that I had painful glands in my neck or the link to Non
Hodgkin's.
Please keep spreading to word.
The lady Kathy really speaks to me and my experiences. Thank you❤ not many people truly understands what it’s like and can be frustrating bc it really did “steal” A lot from me as well 😢
My English teaching career ended because for one thing, my eyes were so ulcerated, I couldn’t read! It calmed down after I got breast implants removed and moved out of a gorgeous condo with mold.
It, and other issues ruined my life. My ridiculous doctor said my symptoms were allergies and she gave me Flonase!!! Finally, my gyno said it’s not allergies and sent me to an ophthalmologist and an ENT. The ophthalmologist diagnosed me and I had to go home and look it up. Losses of money, relationships, family, friends, etc. It’s insidious, as she said!
I’ve been battling a nameless demon for years, and only recently found the answer.
This video strikes home in so many ways, reminding me of everything I have lost and will never regain.
I can live with the pain and random symptoms, but I also have no support from friends or family and am entirely on my own.
I'm sorry you're dealing with this alone. I hope by now life has been treating you kind and surrounded by one's who love and care.
Apologies if this is a tad too long but still there are many things here that can relate to so many other patients. First of all I would like to thank you for bringing awareness into this issue, as a patient I have battled many resistances from people avoiding to accept and understand that an invisible issue is still an issue for those who suffer of it. Sjogren's is not invisible, it is misunderstood. I was diagnosed at the hype of my PhD and had very little understanding and empathy from my academic superiors and some colleagues took advantage of my incapacity to adequately deal with it. A world of unnecessary competition for everyone in this world is a candidate to Sjogren's or any other health disabling issue.
Empathy is, in fact, the missing key in understanding Sjogren's because even healthcare professionals (HCPs) do not fully get it. I diagnosed it myself and informed my HCPs that that would likely be my situation. I say it not for appraisal or pride, but to tell people that if sometimes you do not press on and research a lot on your expenses, people will just let it go as... of a hypochondriac nature. Actually, even within the family circle and the friends' circle ignorance concerning Sjogren's is tremendous. People very often do not accept as damaging something they cannot immediately touch or quantify. How does one quantify intense fatigue/tiredness, pain, or ocular dryness for example? The fact that people out there are so judgemental towards Sjogren's derives from the fact that they are ignorant about it... And this is the reason I tell everyone I have Sjogren's and how damaging it has been to my life, a life I used to lead with energy, intense action, participation and drive. The emotional energy is still there, the body just doesn't follow exactly as it should. Even so, I work perfectly as I used to before being diagnosed. What changed was the after work where I suffer of the after-effects of not wanting to give in at all. Invisible health issues can be so detrimental due to lack of empathy. Ask any family with depressed relatives attempting to commit suicide. Ask how many of them were aware that such people were 'in pain'.
Due to my academic and professional qualifications I have researched and still do research a lot on the topic. I have changed so much in my routines but especially my metabolic discipline. I write loads about it on my blog TheToxicologistToday and I invite you to participate in my/your research for we can help build a much better comprehension for tackling this issue properly. I am not against visiting your doctor, this is not what I mean. By all means get yourself seen by your healthcare professional and follow their lead. But you are the patient and consequently the most interested one in improving by getting to know your disease inside out. Knowledge is power in any situation life-related.
Thanks a lot to those who read this far and for those responsible for the videos. The idea people have of Sjogren's will never be the same ever again, and we must participate actively in defining what awareness we want for this invisible array of limitations.
Thank you for writing this app,This is the best thing that has ever been told about our lives living with this painful experience, I am living with this every single day, and it's just makes me feel like l Im not alone, Thank you from the bottom of my heart ❤️ Bless you all going through this.
Does weight gets reduced in ths syndrome...greying of hairs, tierdness all ths happens
yes
I am a laboratory and Radiology manager and I've had Sjogren's and autoimmune for a number of years, I will be 65 in November and the last two years I had some horrible brain fog. I had a bad flare-up several years ago and it created a lot of problems for me. I had synovitus and vasculitis, had to have fluid drained from my knee and my RCRP was super high along with my ANA and ESR. They believe my Sjogren's is secondary to another autoimmune, most likely lupus and RA.
I had massive amount of joint destruction back in the 90s when I suffered from autoimmune and it left me with erosive arthritis, I've had shoulder surgery on both shoulders. At that time I was bedridden and super sick, every joint in my body swelled up so bad I couldn't even walk... my knees wouldn't bend enough for me to even sit on a toilet. my feet were so swollen I couldn't get my shoes on and I couldn't hold a glass of water because my hands were swollen straight out and the fingers wouldn't hold anything. (I had been playing sports and running about five miles a day and one of the first symptoms I noticed was my knees hurting worse when I was walking up the stairs.) My general physician gave me steroids and an anti-inflammatory and then later on I got sick again and I started on Plaquenil but then I had liver damage. which they thought was from the Plaquenil so they took me off. My liver enzymes were all between 400 and 600. I got off the Plaquenil and the liver enzymes got better. All along I think I just tried to deny what was happening to me. One rheumatologist wanted to put me on Methotrexate and I didn't want to do that so I refused...at the time I thought I was doing what was best for me but maybe I wasn't. I've struggled with joint pain and horrible dry eyes and mouth. Fast forward 30 years, when I had significant eye problems again and they were terrible. I already knew I had failed all the eye tests as far as terrible dry eyes, no tear production. but they were so bad they were scarlet red I had corneal abrasions and then I also developed Synovitis and vasculitis. After having blood tests and going to see a new rheumatologist I went back on Plaquenil...he put me on a lower dose and I have had no problem with the liver enzymes going up and I do take steroids for flare-ups
I also have horrible ringing in my ears which drives me crazy. I continue to take xiidra for my eyes twice a day and I also put lotemax in my eyes at night. My mouth is so dry at night and it just drives me crazy. I also take a very low dose of Gabapentin, 100 mg. I was very skeptical about that because I am not a Pill Popper... I take a ton of supplements which I believe has helped me. Like I said before I'm still working full-time long hours especially with covid it was horrible.
I do suffer with horrible debilitating brain fog, sometimes I feel like I asked the same questions over and over and I can't stay focused on tasks as much as I used to. I would do anything to have just a good restful night sleep.
I feel like I need to take the pilocarpine for my dry mouth but I'm a little worried about that as well I don't know if it's helpful or not.
Anyway that's where I'm at on my journey. my mother and her sister both had pulmonary fibrosis and another sister had an autoimmune as well so I wonder if it runs in the family.
I am 64, it will be 65 in November. I'm 5 foot 4 and weigh about 125 so I'm not overweight. Any other thoughts or ideas about how to help with what we're all dealing with would be appreciated.
Does anybody else deal with horrible tinnitus? I have to put on sleep music at night to try to get to sleep because of my ears ringing so bad.
By the way if... I repeated myself I apologize. I am typing on my cell phone so I can't scroll up very well and see what I'm typing because of this little box that I'm typing in. my eyes are blurry and I've had a long day at work and as we all know brain fog and memory truly sucks.
hugs to everyone
This is so well-said! It’s horrific, and I have been labeled as a hypochondriac, a druggie, especially because I also have other autoimmune diseases, severe brain fog, and the losses are devastating, as you know. Thank you. I could write a book, as could you. Thank you for being a good voice for Sjogren’s.
Don't forget about extreme fatigue and brain fog. Dry esophagus. Muscle pain.
I've recently been diagnosed and was experiencing these things. My primary at the time basically told me it was all in my head.
@@TheLbeebe7 I'm so sorry you had to go through that.
For me the dry esophagus means frequent choking while eating. I have to take in a lot of liquids when I eat and that pushes my blood sodium level down low. My medical providers keep telling me to drink less.
I also have the dry eyes and dry mouth. When I feel a little hungry, and then eat food, after about 10 to 15 min, a terrible nauseousness come over me, and I have to run to a toilet. All my foon is vomited out and the stomach keep contracting, even there's nothing left in it. Then I feel very shaken and weak for rest of the day. So have to drink something woth food. My nervous system has been attacked, and I shake since the age of 30. Now, being elderly, I sort of manage it, by taking omega3, anti depressies, heart tabs, thyroid and blood pressure meds., For the haar and nails 1 folio acid tablet a day, and supplement such as vit B complex, D3, Vit C with calaium-magnesium.
All that help to keep me going. Best is to never complain, and lead your life the best you can. People have no understanding of one's illness. Even if you perhaps tell them, they just look at you, its obvious they think . "But you do not look sick " Nowadays my hands are weak and painful and I drop everything I handle.
@@LR-yu3mx I'm so sorry. Yes, people definitely do not understand. I hear you don't look sick all the time. It's called an invisible illness for a reason. Have you ever seen a GI Dr? I take Bentle and a nauseous medication prescribed by my GI doctor. Since I wrote this I went to LA to see a Mayo clinic Rheumatologist specialist. He has educated me on so much... more than any other Dr has. I don't have friends they tend to leave you when you become sick so my husband and kids know how sick I am. I don't complain to them. If I'm doing bad I complain to my drs. That's what they get paid to do is listen and try to help and make us feel better. I pray for all of us suffering with this disease and other autoimmune diseases.
Newly diagnosed and so happy I found this. Not knowing what to expect is scary.
Thank you so much for discussing how to talk to friends and family. Because so many as you said prejudge us because of our outward appearance. It becomes difficult at times just to say I'm not having a good day because you don't want to go into this long discussion. Thank you again for such great information.
Gets exhausting trying to explain or get folks to not shame.. but understand or condition we’re also trying To adjust/cope with. they’ve said things like “if you take this supplement, you’ll be cured!” Is not really supportive
I was diagnosed at 19. My first symptoms were severe fatigue and fainting spells. I'm 25 now and already had two major ankle surgeries thanks to degeneration as well. The fatigue feels like it's killing me and myself family doesn't understand.
Thanks alot for the awareness. Suffering from rheumatic heart disease which was diagnosed afew years ago. Its like u guys r reflecting on my other problems which r joint pains n dry mouth n eyes problem, as well as lack of concentration etc. True that people really do not understand the fatigue n pain that i try to explain. Even been sent to a psychiatrist but nothing helped n only have confirmed rhd while they can not explain the joint pain n stuff. Even hav itchy ears alot n the docs say its really dry n advised me to drink lots of water. God bless u all for the awareness as this can help others to understand u rather than to misjudge u. 😥
For 14 years before my diagnosis of Sjögren’s, I thought I was just weak, that I couldn’t handle everyday pain or common illnesses. So I felt validated. But it also helped me paradoxically to see that oh thank goodness this isn’t how everybody feels.
Thank you for all that you do in bridging the gap in getting very useful and relatable information for those of us with Sjogren's. What a wonderful resource!
I have had multiple surgeries on my connective tissues since getting Sjogren's. My joint pain and neuropathy are sometimes through the roof! I did stop eating grains, all grains and my stomach issues have gotten better.
Interesting. For me it's wheat specifically that can cause negative effects on my stomach (stomach ache, heartburn), especially when combined with tomatoes (e.g. spaghetti and tomato sauce, pizza with tomato sauce, etc.). But when I make pizza or cake or other products from wheat flour mixed with a good percentage of rye flour or wholegrain flour, these effects are much more mild and mostly unnoticeable/gone. Also, using fresh tomatoes in sauces instead of concentrated pastes helps me.
I wish I had support like this 😓 I find it so hard to do with very little support
So thankful to have stumbled upon this channel and finding support/resources
I tell people that when small-fiber neuropathy is involved, it's like having MS plus lupus in how it can damage our bodies.
Newly diagnosed with Sjogrens and Fibromyalgia.... but God
Amen!
Thank you for this! This is all so true!
The woman who spoke the most, gave the most accurate portrayal of this disease.
Talking about it, and trying to educate my family and friends, backfired, and now I’m excluded from being part of my family and have become the scapegoat. 😢
Thank you!
I was always a hard worker and always burning the candle at both ends. Now I can clean 2 rooms and be exhausted and have to rest for several days. This disease has stolen my life. It started after a hysterectomy that was botched and I was rushed back into surgery. Couldn't identify the bacterial infection and gave me several antibiotics trying to cure the infection. That was in 2013 and my life has been hell ever since. I was diagnosed in 2018 and have found things on my own that help. All the doctors wanted to do was put me on steroids on a daily basis. That was horrible and the only solution I was offered.
This series is incredible.
I have been ill since 2014 and was formerly diagnosed with Sjogren's 3 years ago.
A friend of mine is now in the diagnosis stage of her illness and Sjogren's is suspected.
I'm so glad this series is available to share with her.
It's harder watching her go through the onset of disease and process if diagnosis than it was going through it myself.
Thank you for this video and all the work you do.
A great initiative. Keep it up.
Thank you
I’ve been having a hard time having a dr tale me seriously, I’ve been diagnosed with this disease and the Rheumatologist never followed up with me. Just to get this diagnosis alone was a nightmare, my primary Dr was trying to send me to every other specialist but a rheumatologist like a dermis, even a podiatrist because my feet were swollen and had a rash like dots on my legs. Until i stood up for myself and he did some blood work which showed i had abnormal antibodies in my blood, but still I’m in limbo. I now have redness (severe) on my face and all over my body. I seriously don’t know what to do.
Thank you.
My son is now dealing with the beginning of it. He thinks he has chronic fatigue syndrome.
I'm guessing a lot of people who think they have chronic fatigue (or have even been diagnosed with it) may actually have this and just haven't found the right doctor.
I've spent year's in the dentist chair. Two days ago the 2 teeth holding my bridge broke. Now I can't eat
I think about suicide often. No one in my family believes me, so I have isolated from everyone.
Never contemplate suicide, share this video with family and friends. I lost all my teeth 7 years ago and I learned to eat without teeth because I am not able to wear dentures. I learned to eat softer food and slower. It takes time, but you will be able to eat almost anything. I truly understand... Find peace and acceptance in the person who created you, and who loves you, that person is Jesus Christ. Pray to Him and find peace and comfort even through this journey. I am broken, but not forever. One day, I will be with Him.
Reading your comments are gut wrenching. So so sori. Try not to give up. So hard i know. Is there an Association or Group you can speak with and get support? With all my heart i wish you well.
I have had dry eyes/dry mouth/ dry skin/hair loss/ celiac/ osteoporosis in my upper spine/ arthritis in my hips /chronic fatigue for many years. My GP says I have sicca syndrome, not Sjogrens. No one seems to know the difference. This very frustrating.
It is really annoying. Lack of knowledge from Dr's is astounding. Get help from a Dr who knows about the condition.
@@jilljones4566 :thanks, but not many of those either!
A support group may help with this kind of disease. I have it and been thinking about this.
I just got diagnosed yesterday, plus other conditions. I am only 33
I was diagnosed at 19 😔
I got diagnosed with SLE LUPUS VASCULITIS with sjogren's just yesterday.
And am 34 years old single female.
I just want to know can I marry and have babies 😢😢😢😭😭😭
@janet me 2
@@kddk664 I am married and have 4 kids. Pregnancy can be hard on the body. But talk to your Dr. And develop a plan. Also its important that the partner educates themselves about the conditions. Hugs
@@wetjuicy87 Thanks so much for your encouragement and reply.
It means a lot.
Blessings.
I also have cardiac & gastro issues now
Does it get automatically worse with time ? So far mild dry mouth and dry eyes. No other symptoms. I dread the symptoms
Where can l find a Sjrogens Medical Doctor? I live in Jacksonville Florida
You have to see a Rheumatologist. I do was diagnosed w/sjogrens last yr. I'm seeing a Rheumatologist every 6mos now
No mention if Sjogren’s can cause redness and swelling in the cheeks?
Red face is usually common in lupus
I get so frustrated even with this organization. Am I the only Sjogren’s victim out there that has a central nervous system disease that mimics MS? “Neuropathies” are occasionally mentioned and I’ve read once or twice about the rare complication of central nervous system issues, but it never seems to be discussed. I’m already an anomaly as a man with Sjogren’s who has to deal with the widespread belief that it is only a mild disease, but I get the added benefit of dealing with what my neurologist diagnosed as “demyelinating central nervous system disease NOS” but verbally attributes it to my Sjogren’s. Thank goodness for an incredibly supportive wife and family that helps me deal with my unique situation that I don’t understand even after 15 years of increasing debilitation.
No problems before January at this time I was in bed for 3 days with pain in my feet and went to my hips, the pain was so extreme . A blood test I have sjogrens I don’t feel the diagnosed correct. The pain has progressed , my legs just don’t want to carry me. There is nerve damage.
I m suffering too from sjogren syndrome
Here's a good video addressing Sjögren's and CNS. They discuss NMOSD. ua-cam.com/video/VAGXmw276us/v-deo.html
You’re not alone. I too have MS type symptoms. In fact, I had to have an MRI of my brain last year to rule out MS, which it was ruled out. It’s just my SS progressing. Such a strange disease we have that I honestly think doctors still don’t know much about. Hang in there. I take Alpha Lipoic acid and it helps tremendously. It even helped me get off Gabapentin.
@@aprilwhite3474 when you had an MRI... did the doctors see any lesions on your brain and spinal cord?
Clev clinic dionost me w lupus, and turns out it's not lupus its Sjögren's, found out from about dr, 2 diffrent diseases, I'm kinda upset w clev clinic
I am 20 yrs old i have sjograns syndrome but i didnt have any gland related problem ,i have recurrent swelling and sevior pain only in my right elbow and the pain is radiated to neck,back,wrist thub etc........ Any one have this like problem plzzz replyyy
Me to
yes I've had joint pain and swelling over the years as well, joint destruction and synovitis
I am not only happy am alive but also glad that "DrMadida" was able treat and cure me with his herbal medication🌿 of my parosmia 👃🏻👃🏻, Meniere disease and Parkinson disease(PD) 🤢 with their herbal treatment.
Plz make videos in hindi language
Trigeminal Neuralgia
Try 32 years 😢.
Took over 10 years to diagnose.
When women reach the level of Sjgrorens, I live with, you 💯will think of death being a relief.
My opinion only.
Good night, folks. 😢
P.S. SEE the edit? Blindness will be a relief 😌
Sjogren's is a curse, there is no other way to describe it in my opinion. I ask myself over and over why me??