Hello everyone. I was recently diagnosed with Sjogrens and have been searching the Internet for anything I can find on the disease. I found this forum and have been reading everyone's posts for a couple of weeks. I must say I am encouraged to see that I am not alone with this dreadful disease. It is good to see that others are experiencing some of the same symptoms I have been experiencing for years.
I have had problems with dry eyes for years - to the point that people would ask me "what is wrong with your eyes" because they are so red and irritated. I have talked to optomotrists over the years but the always say that I spend too much time on the computer or that my allergy medications were causing the dry eyes. Last year, I went to a new optomotrist who did an Xray of the back of the eye- she found a "spot" on the back of the eye and said that it could be from my blood sugar being too high- which it had been for awhile. The optomotrist elected to have me wait a year and reevaluate the spot this coming June.
Over the years I have also experienced extreme thirst, dry skin, dental caries, genivitis with bone destruction and fatigue. The past few years I have been noticing that I forget things - like why I went to a room or what I needed at the grocery store. I have always put it off to the fact that I have too much going on. Recently though I have noticed that I forget more and more things. I cannot remember what I am trying to say. I lose my keys. I leave doors open. Yesterday I left the refrigerator door open. This morning I made coffee, poured a cup and then set the carafe on the counter instead of back on the burner!
I have been under a great deal of stress this past year and my symptoms are almost unbearable. In February I sat in my Primary Care doctor's office and cried because I felt so bad. My blood pressure has been sky high and uncontrolled even though I am taking medication for it. Each time I go to the doctor, my blood pressure is even higher. She has been having me monitor it at home and it is always high- especially at work. She is talking about having me quit work because the blood pressure is so high.
Regardless, at that visit, I was crying and explained that I hurt all over- my joints, my muscles, my hands and fingers, my feet. I explained that my hands and feet are swelling and painful. I mentioned that I am exhausted but unable to sleep. She ordered an anti-depressant (Lexapro) and some bloodwork. A couple of weeks later she phoned to tell me she thought I might have Lupus because my ANA antibody levels were positive and showed a homogenous and speckled pattern. She referred me to a Rheumatologist who agreed that I have an autoimmune disease or two- one of which is definitely Sjogrens. He noticed my eyes and dry skin immediately.
After a thorough exam he diagnosed the Sjogrens. He also said I have fibromyalgia. He gave me injections of steroids and Vitamin B12. He also sent me for bloodwork - they drew 13 vials of blood to see if I have primay or secondary Sjogrens. My Sed rate and RA factors are normal so he does not feel I have Lupus but maybe Hashimoto's Thyroidism (sp?). He also tested for Lyme's Disease, Human Parvo Virus, Hepatitis B and C and specific tests fo Lupus and Sjogren's and a whole bunch of other tests.
He changed the antidepressant Lexapro to Cymbalta (for the fibromyalgia) and ordered Relafen for the joint pain and stiffness. The Cymbalta keeps me up all night so now I am even more exhausted but cannot sleep. My muscles constantly ache, twitch and burn. My joints hurt, my vision is blurring and I am forgetting things more and more. I have a pressure in my chest and arms that won't go away. I described this to my husband as a feeling of carrying heavy boxes all day and my arm muscles have been over extended during the day. I lose my balance sometimes, drop things that I am carrying, have problems walking through the grocery store because I am exhausted by the end of the excursion.
My husband is so supportive and helpful however even he is getting frustrated- and I don't blame him. This morning when I left the coffee caraffe on the counter he said "honey you just don't think - you are off in la la land"....and that is not the case. I DO think. I don't mean to forget things but I do.
I go back to the Rheumatologist on May 5th and will ask him to discontinue the Cymbalta. I would rather ache all over as to not sleep more than 4 hours a day- I am even more exhausted than before. I am trying to continue working, but after an hour commute each way and working at a very stressful job for 8 hours, I am mentally and physically exhausted.
I am afraid this disease will consume me. I have never felt so out of control of my body. I told my husband that it is like I have a monster inside of me fighting for control of my body- and frankly, I am not ready to give up control of my own body. It is extremely frustrtating to feel SO bad and everyone thinks you feel fine because you look fine. And when you look fine, people still expect the same from you as always- and frankly- right now I just don't feel up to delivering what they expect from me.
I am sorry this is such a long post. I am just so frustrated this morning.
Hi Rhonda :)
Welcome to Sjogren's world. I completely understand your frustration. You've been ill for a long time and it's taking its toll. Things can be better though!
Hopefully the next time you see your rheumy all your results will be through. If the Hashimotos's thyroiditis has caused your thyroid to become underactive, thyroid replacement hormone could make you feel considerably better.
There are medications for SjS as well. The first tried is often Plaquenil. It can take several weeks or even moths to work - but it does make a difference.
As well as seeing a rheumatologist you should probably be seeing an opthamologist for your eyes. (Not an optomotrist) With Hashimotos - you should probably see an endocrinologist. people with Sjogen's kind of collect 'ologists'. It's not that we want to - but we seem to need to!
You'll read about the forgetfulness in here. It's referred to as 'brain-fog' and is very common. It's very frustrating as well but we usually manage to laugh about it. We do some silly things!
having a supportive husband will be a big help. It would be good if he read up on Sjogren's as well so he understands what you're up against!
I have an SjS/lupus overlap and also Hashimoto's and I can honestly say that I feel better than I used to - so I hope the same will be true for you. It can take a while to get things stabilised though. This forum is a good source of support.
Take care - Scottie :)
Oh Rhonda, honey!
I'm so sorry this is happening to you!
I've met the MONSTER you are fighting. He can be a tenacious fellow! The things he's doing to you sound very familiar!
I think you have a real good chance of taming this miserable beast because your rhuematologist sounds like he's pretty smart. He is right on track...ordering the right tests and sounds willing to try different treatment options.
As Scottie mentioned they usually wait for all test results before starting treatment but you should expect he will make a some changes to your current medications. Hopefully, if you can get the autoimmune to settle down your blood pressure will start to come down too!
Thinking of you and wishing you to feel better, my dear!
Janna
Thank you both Scottie and Janna for your kind words of support. When the rheumatologist suggested I become involved in a support group for Sjogren's I actually laughed. He gave me information for the local chapter of the arthritis foundation and told me to contact them for more information. I told my husband that I did not need a support group to handle my own frustrations. Once I found this site and started reading everyone's posts, I realized that I DO need a support group. It makes me feel better to know that I am not in this alone. I thought for awhile I was losing my mind or that I am just a hypochondriac! It is incredible to realize that one's body can turn against you, but I realize it can and does happen- I am living proof - and so is everyone else on this forum.
Thanks again for the kindness and support. I will pay it forward.
Ha Rhonda!!
I said the same thing a year ago when I was diagnosed!
I've never been part of a support group because I happen to KNOW IT ALL and certainly don't need something like this!
I read all 5 jillion medical websites that have the same 6 paragraphs describing Sjogren's Syndrome and was frustrated.
Also my husband just falls apart when I talk about it. He seriously starts to get sick too! One day I cried in front of him because I was hurting so badly...he ended up in bed over it!
Every time I googled "Sjogen's Syndrome" this forum popped up. Finally I gave in and checked it out.
Turns out it was the VERY BEST THING to do! I cannot begin to express what this place has meant to me.
Rhonda,
No, you are not alone! You will find that coming in here is good in a lot of ways. It gives credence to your illness. It offers the shoulders of others like you when you need to vent. You will find that there are those who suffer more than you do (or in different ways,) and you can be their strength. You'll get lots of good ideas for relief and some good humor, too! I'm glad you found us.
Has your rheumatologist mentioned Plaquenil to you? If not, please ask about it when you see him again.
I hope you have a good day!
Cheryl
No, the Rheumatologist has not really mentioned much in the way of treatment at this time. I had my first visit on April 7th where he reviewed the initial bloodwork ordered by my Primary Care Physician. I return the rheumatologist on May 5th for results of the numerous tests he ordered on April 7th. He said he wanted to wait until he got all the test results back before he started any real treatment. He did start the Cymbalta and Relafen for the fibromyalgia.
I have started a list of questions I want to ask when I go back. Additionally, I have started to write down symptoms and complaints I have so I can show that to him- because I was so shocked that I had an autoimmune disease when I first saw him that I forgot everything except those words "autoimmune disease". I had convinced myself that I have always been healthy and I could not possibly have anything like that- boy was I wrong!
Thanks again to all- I was so depressed this morning- I am feeling better already! I feel like I have finally found a place where people understand what I am going through and I don't feel so all alone.
Rhonda
welcome to the forum!!
your not alone and no this is not a aplce of morbidity, some good laughs, highs and lows shared here, with ppl who completely understand!
I have fibro and awaiitng my lip biopsy to completley confirm sjs , eyes been dry for 30 years sinc ei was 7, and symptoms building up almost exactly like yours im afraid.
What i can say it i have my fibro under control, not by drugs, they helped very briefly then the insommina kicked back in :(
There is a school of thought that fibro is acutally candida overgrowth and sinc eive been on the candida diet and supplements to kill it, ive improved alot of symptoms, but i have to say not the SJS ones.
But one monster off my back is great as fibro p[ain is undescribable , your swear you were dying that day !
so glad you found this forum, post up any qestions, worries, or just rant, we all do
T x
Welcome Rhonda, I like JannaLee have went to thousands of websites with information on sjs and they all have the same one page article. Ive also been to other autoimmune support groups and to me this is the best one. Everyone is so caring and open. I myself dont have sjs but my 4 year old little girl does. They have welcomed me and my family with open arms and have been a great help. Hugs and Kissess Jonnell and Jenna
Hi Rhonda
Welcome! The others have said most of what I would have said: familiar symptoms, try Plaquenil, be kind to yourself, is sort of it in a nutshell!
I'd just like to add that I think you're dealing with this onslaught of symptoms and tests incredibly well. You've found a doctor who is taking you seriously which is a great start.
You've found us - what could be better!
You've been open and honest about your feelings which means so much. And now you're starting a symptom journal which will help your doctors assess the progress of your illness, and will also enable you to take it seriously.
Diagnosis is a shock but it also means the possibility of treatment. Scottie's right that it can take a while to get things stabilised, but it is possible to feel better than you do now. Take good care of yourself.
Thinking of you - Chickpea
Hi Rhonda,
The others have already replied so wonderfully.
I am sure you already know this.... Stress is a valid factor. AI disease is sensitive to our stress levels. Not something we feel aware of until were in the middle of stress and over doing life in general. So all I have to add; part of our journey in adjusting to my new life with SJS is becoming aware of our limits, is very important. And it is okay for close family and friends to understand the fatigue factors. Brain fog kicks in most with fatigue.
Take good care of your self. Know there are mental adjustments as well as physical, depression kicks in along with fatigue, all of these wheels seem to spin together. When you identify these issues it will help you navigate this journey.
So glad you found us. I am sure you have much to share as well as receive. We are all here for one another, kick your shoes off and make your self at home, we are a sjoggy family.
Blessings kimbo
Hi Rhonda,
Let me also welcome you to the SJS World! I'm glad that you've had a chance to look around, as there are so many topics here that I almost never have a question for the rheumy anymore (he's a quite kind of guy).
The others have given you some great advice and there's not much I can add, but to come often to hang out, rant, rage, or if you just have a question as there is usually someone about the board.
Take care -
Patze
Hello and welcome from me, too, Rhonda.
Everything has been said, and very well at that, so all that remains is to invite you to explore the site, get to know us, post when you feel like commenting, venting, ranting, laughing, crying or sharing, and be kind to yourself! This may be the first time in your life that you realize that you can't look after everyone and everything else in your life, unless you look after yourself first!
Rhonda, so glad you found this place. Sjogrens World really helps the mental aspect of dealing with this stinky disease! I have found so much comfort here and was directed here my another member when I was reaching out to anyone. I thought I was soooo alone. I was angry, frustrated, and depressed ALL the time. I won't say that I still don't have days like that....because I do. They are just a lot less and I know I always have someone here to lean on.
Welcome!
Take Care!
Vicky
Hi Rhonda, (my favorite name and my daughter's name!)
You are obviously overwhelmed with all of this new information, and rightly so. You'll find info for just about everythiing here. Many times we can get info that our doctors don't seem to know or be forthcoming with.
i was dx two years ago and was put on methotrexate and prednisone, then Plaquenil. I stopped the prednisone after a year or so. I also take some other meds, but mtx and plaquenil are the main ones for my Primary Sjogrens.
Nice to have you aboard, although we're sorry you have to be here. Lucy
Rhonda, Welcome to the site. So sorry for all that you are going through. It is great to have a supportive spouse. And welcome to La La Land (aka brain fog). Please try and get enough rest. Don't overdo. I have found that I feel worse and the brain function is worse when I do too much.
This can all be so overwhelming. I have found a great group of people her and much insight into AI problems through this sharing community. I have never thought of going online to talk to people that I don't know. It is wonderful to share this with those that understand and have similar experiences. There is so much compassion, understanding, sharing and love available here. Hope things get better for you.
Roxanne
This is a great group of understanding people. Especially, when no one else does. Sjogren's is weird in that it effects everyone so differently. Unlike, RA, where in most cases it somewhat obvious. What we think are symptoms that aren't recognized or not related, when in fact they all are.
The main thing is to try and keep your stress level down and rest. I know stress is what caused my Sjogren's to start and then made it get worse.
It sounds like your doc is on the right track. Stick with him/her! Many of us don't get a diagnosis. Hopefully, I will get something from Cleveland Clinic next month.