Our world is learning a lot about invisible illnesses during this pandemic. Even though Covid-19 can’t be seen, it is still stealing health and life to many people. The heartbreaking results of the deadly virus are seen every day. The illness I have is Sjogren’s and it is an illness that is invisible and also unknown to too many people.
When the term auto-immune disease comes up, people immediately think of Lupus or Rheumatoid Arthritis. For years, I was afraid that I had Lupus because of my rashes. One doctor even suspected Drug-induced Lupus, but my rashes didn’t go away after discontinuing the medication that can cause it.
Lupus is a horrible disorder and can be fatal. But, the condition I’m writing about today is Sjogren’s. For years it is has been referred to as Sjogren’s Syndrome. The Sjogren’s Foundation has just shortened it to “Sjogren’s”, which is the best thing to do. What is Sjogren’s? Let me tell you my experience.
Sjogren’s is a systemic auto-immune disease that is similar to Lupus. The word Sjogren’s is hard for people to pronounce and spell. It’s pronounced: Show-grins. Because it’s systemic, it affects all parts of the body. Unfortunately, too many doctors only think that this disease only creates dry mouth and dry eyes.
The dryness can affect many parts of the body. There are also symptoms of severe fatigue, chronic pain, major organ involvement, neuropathies and lymphomas.
My symptoms (so far) are: severely dry eyes, mild dry mouth, severe dental problems, chronic pain, kidney disease, small fiber neuropathy, and raynauds. My body deals with chronic rashes, which have been diagnosed as many things: Lupus, Eczema, and Psoriasis.
My eyes are mildly dry during the day. But, by evening, they get progressively more dry. Most nights, my eyes get so blurry that I can’t read at all. My teeth have been crumbling for the last 10 years. Almost every tooth has multiple fillings or crowns. Chronic pain keeps me miserable all day and night every. single. day.
Because there is a terrible lack of pain management available to me, I am only able to take muscle relaxers, Cymbalta, and Tylenol. This leads to many nights with little sleep. I have Stage 3 Kidney Disease, and am no longer able to take Advil or NSAID pain relievers.
Small Fiber Neuropathy caused me pins and needles pain at first. It started only in my feet and hands and over the years spread to my entire torso. It progressed to feelings of electrical-type zaps and painful burning. When I was diagnosed by extensive testing, I was put on Gabapentin. This is a great drug for neuropathy, although it caused terrible weight gain.
My skin is dry and my clothes get covered with tiny dust, which is just my dry skin flaking off. If I wear eye makeup, my eyes swell and hurt. I feel sad that at the age when I really need eye makeup, I can’t wear it. My face and eyes are very puffy all the time.
Other symptoms of Sjogren’s are: dry nose, brain fog, sun sensitivity, loss of taste, burning mouth, dry nails, hair loss, headaches, light sensitivity, and more. Every patient is different and will have a different set of symptoms and these can change at any time.
The medications that are offered to us to treat Sjogren’s are not a cure. In fact, there is not one medicine that was created for Sjogren’s. We are given drugs that were developed to treat Lupus. The main drug is Plaquenil. You’ve heard of it on the news during the pandemic: Hydroxychloroquine.
Other medicines that can help symptoms of Sjogren’s are: Methotrexate, Imuran, Cellcept,and Cytoxan. These are immune-lowering drugs and will make the user very unable to fight off viruses and more able to get cancer. Because Sjogren’s causes our immune system to attack our own body, immune lowering drugs can stop Sjogren’s from attacking us.
When we take medicines for Sjogren’s there are numerous tests we must have to check for complications. Hydroxychloroquine can damage the eyes permanently, so we have to see our eye doctor every 6 -12 months to see if any damage has occured. We can’t have Lasik surgery or wear contact lenses. Immune suppressant drugs can allow us to get cancer, so many blood tests are needed.
At regular Rheumatologist appointments (every 3-6 months) large amounts of blood will be drawn. I usually have 14-21 vials of blood drawn every 6 months. This isn’t an easy disease. It ruins your health and can be fatal if not treated.
It’s a tricky thing to treat. I’ve been on Hydroxychloroquine for almost two years, and haven’t felt one bit of improvement. Doctors want me to continue to take it, because it can slow down the progression of the disease.
April is Sjogren’s Awareness Month. Many of us who suffer, are trying to spread awareness of this terrible condition. We want doctors to understand the systemic disease and not take it lightly. We want research to be conducted and help us fight this problem.
Thanks for taking the time to learn. Do you have Sjogren’s? What is your experience? Are you able to get your prescriptions filled? God bless you all.
@2020, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This contains my understanding and opinions and aren’t meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.
I’ve heard of Sjogren’s but I don’t know anyone who has it. Chronic illnesses, especially autoimmune since they’re all-encompassing and often invisible to others, are so hard – I’m glad we as a society are finally starting to talk about these conditions and raise awareness!
Yes, I think the openness of society is really helping us spread awareness of all types of diseases. It’s so important 🙂
I have heard of Sjogren’s, and knew it was an autoimmune disease. I didn’t know what symptoms it caused. I have hypothyroidism, fibromyalgia, and chronic fatigue. It is something I must manage. As long as my thyroid meds are correct, I do have some good days. I am sorry you have to deal with this severe disease. And I appreciate that you’ve taken the time to explain it.
Michelle
http://mybijoulifeonline.com
Thanks so much for taking the time to learn about Sjogren’s. You have a plate full, too. My doctors always think I have hypothyroidism, but the tests never show it. I hope you can keep those meds at the right levels and stay safe during this pandemic 🙂
Hi Lisa, My name is LaVida and I’ve have Sjogrens. I’ve had it for many years. It took over 15 years to get diagnosed. Things got so bad at one time that I took time off work to go to the Cleveland Clinic hoping they could help me. Instead of help they wrote my primary care doctor a letter suggesting I had a mental illness and recommended I seek help. Thank goodness my doctor knew that was not my problem. He referred me to a wonderful neurologist who diagnosed my Small fiber neuropathy right away. I have this neuropathy on my left side. This is in conjunction with my severe chronic pain. Arthritis has taken over my body. I can’t sleep and can barely eat due to devastating problems with my teeth. It’s going cost around $50K to restore my mouth because insurance won’t pay for the surgery. The thing that bothers me most is the lack of understanding among my family and friends on Sjogrens. Because I look healthy they have a very hard time understanding that every nerve in my body is on fire. I’m so tired I can’t stand it and just getting through today is an accomplishment for me. I got really sick while vacationing one time and a friend said she sometimes thinks I make this stuff up. Needless to see I was crushed. I’m trying to stay / get healthy and to lose weight. Exercising hurts so bad because of foot nerve pain. Thank God I’m not diabetic. There is a God. In spite of all this , I refuse to give up. I don’t know how, but I will get better. I’m trying to figure it all out now. I wish you the best and I will keep you in my prayers.
LaVida N.
It’s so unacceptable that the Cleveland Clinic would treat you in this way. But, I understand. Many doctors told me that I was just depressed and needed to exercise and take anti-depressants. It’s shameful that it took 15 years for you to be diagnosed.
I wish that dental work would be covered medically, like they cover our eye care. I understand your problem, because my teeth are crumbling all the time. I’m so sorry that people have doubted you. I can relate to that, too. I’ve heard it and seen the eye-rolls. Thank you for the prayers. I will also pray for you.
Hi Lisa. I was diagnosed a little over a year ago when I was 28. My doctor says I’m one of the youngest she’s ever seen with Sjogren’s. It’s a struggle but also a relief to finally understand why I felt the way I’ve felt for years now. Other doctors had no idea what was wrong. Finally someone believed that I wasn’t well and did additional tests. It’s rough to know that I’m young and will have to deal with this forever.
I”m sorry that you were diagnosed so young. Hopefully, treatments will help your symptoms. There are a few benefits to knowing early, though. I had to wait so long to find out and without appropriate tests for years, I didn’t have the opportunity to look at my other health issues without full knowledge of why things were happening. (miscarriages and early autoimmune issues). I hope and pray that new treatments will come in the near future. We sure need them.
This is the first good arcticle I’ve read on describing the disease. I felt so validated!! It’s so hard to explain it to others as it seems like it is fake or made up when in reality it is constant guessing game. Thanks for writing and making us sjogrens people a little closer and for educating those around us.
You’re so kind 🙂 I wish we didn’t have to explain it because of people’s unbelief. I hope someday those of us with Sjogren’s will be more understood like those with Lupus.
I have sjogrens and was diagnosed by my neurologist after many years and just not giving up. This is a great article. I could not understand why if I wore makeup my eyes would swell and my eyelashes would just fall out. No one ever told me about that one. The dry skin and the amount of care needed to manage is a lot. Thank you for bringing awareness.
I’m glad that you finally were diagnosed. It’s a shame we have to work so hard to get help. I wish you lots of good days 🙂