Hi. I'm new to this forum.... but not to Sjogrens. I was actually diagnosed with Fibromialgia 20 years ago - and "maybe Lupus and Sjogrens." (Both were suspected, but tests were inconclusive). I was in denial for years.... I was tired of the attitude toward the disease - by my doctors, friends and family. I chose to put it on the back burner and forget I had anything wrong. And I managed to keep it in remission for 19 years. But it caught up with me last November. My entire body shut down - and I had to listen to it. I had to face the reality that I was really sick. My labs came back positive for an auto-immune disease... but none of the labs were indicative of any one disease. So I was given a new diagnosis of Undifferentiated Connected Tissue Disease.... just another way of saying "You have something, but we don't know what it is yet." I've had 9 months of complications due to allergies and "intolerance's" to so many medications - including steroids (pills, shots, and creams).
I have recently started taking Plaquenil.
My worse symptoms seem to be the extreme fatigue... rashes.... and very intense DRY DRY DRY itchy skin. I guess I should add the bloating, and weight gain from the steroids - which I cannot seem to loose.
I'm hoping to learn more about this horrible disease and (hopefully) go back into remission so I can have quality of life again. Thank you for letting me join your group..
Welcome to the board, but sorry you are ill. We all do understand, and are always here to help and encourage any way we can.
Most of us have had to go through the times of waiting to know for sure if we had a particular diagnosis. It seems to be a part of this.
Then it seems to take trial and error to find out what helps with the symptoms, because we are all very individual.
You will find more answers with time. Be encouraged even through the pain, and we are here to exchange information, experiences, and to listen to the good times, and not so good times.
susanep :)
Welcome Byn, Here are some things that I have learned over the last 28 years and they may help you on your quest.
While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.
With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.
Ah yes, the undifferentiated connective tissue disease diagnosis! I have that one, too! I used to feel insulted, like the doctor was just placating me, but he gives me the same medicine as he would if I have a full Sjogren's diagnosis, so I've decided to just accept it.
It sounds like your doctor is taking you seriously, too, so I'm very happy for you. I'm especially pleased to see that you're taking Plaquenil. I love that stuff! It starts working slowly and over a long period of time --- I remember that it was six to nine months before I noticed a difference, and even then it was only because my rheumy pointed out where I was when I'd first come to see him (i.e.: suicidal) and where I was finally.
So even if you don't think it's doing anything, hang in there and keep taking it as directed! It takes a while to build up in your system.
I've been on Plaquenil for about two years now, and I've mostly got a great life again. I still have about three days a month or so where I can't get out of bed, and I live in dread of that twinge of headache that signals a flare is about to start. I hope you have the same great response to treatment that I've had.
So, as Susanep said, welcome! We're glad to have you among us, but sorry that you belong! ::)
Jump in and start posting -- there will always be someone who can help you, or someone here you can help.
Good morning.... thank you for the warm welcome. I'm still in "learning mode" when it comes to maneuvering around in the forum. But I will catch on pretty soon.
Hi Susanep - What you said about us being individuals is so true. That is one reason why these diseases are so hard to diagnose. Our diseases are the same for the most part... symptoms are the same.... but what works for one doesn't work for the next. The treatment may work for awhile, and then the same treatment may actually set off the flare up the next day .....It is frustrating to say the least.
Hi Joe - Thank you for the information. I will check into it... especially the "Fab Five." I'm all about the natural treatments and supplements since I am allergic or intolerant to so many synthetic meds. I'm holding my breath with the Plaqunenil. I've been on it for one month and seem to be doing ok so far, but I have had some problems with my vision from time to time. It is always temporary and short-lived... but still, I need to keep a close eye on my eyes. 8)
Hi A66yroad - My doctor (Rheumy) is WONDERFUL. She has never made me feel like a whiner, crazy hypochondriac, or been insensitive in any way. Even when my labs come back negative (there was a low positive ONCE), she takes me very serious. Of course, there are other indicators showing something is amiss. The ATTITUDE of doctors, family, and friends makes a big difference in how well we respond to treatments. So much of our treatment involves our mental and emotional well-being. I have suffered with FM (fibromyalgia) for 20 years. One doctor/friend told me 15 years ago I had Lupus - but with no positive lab results, I figured he was jumping to a diagnosis. I should have listened to him - his wife died from complications of Lupus, so he knew what he was talking about. I've been told for years I had Sjogrens - but AGAIN, with no positive test results, I let it ride. And I did ok for 20 years with aroma therapies, supplements, and other natural forms of treatment. But when the disease changed course, it REALLY changed with a vengeance. I have been sicker than I have EVER been. The headaches are unbearable. I wake up every morning with "a hangover" without the party the night before. There are so many symptoms - Hopefully the Plaquenil will help... (fingers are crossed)
Welcome Byn,
You will find the most amazing, helpful, funny, serious, crazy people here. You will learn so much! Use the search button to find topics too and remember, every day is a turn in the road... it is not good or bad, just a different view. I hope you feel better soon, no more hangover headaches, unless you earn them legitimately! Good luck and again, welcome!
Gayle
Thank you Gayle. No kidding on the hangover headaches..... If I'm going to suffer from them, I at least want to EARN them. :P
Hi Byn - welcome.
Sorry to have to welcome yet another person dealing with Sjogren's - but, this is the place to be to find others who are on this journey too.
We're a worldwide community of both female and male, young and old and we come from all walks of life.
It's not unusual for some members to have more than one autoimmune disease added into the mix.
If there are specific topics you are interested in, if you put that word(s) in the search box to the top right of this page, it will take you to previous threads about that topic.
I hope you find this forum helpful to you on your Sjogren's journey. Please remember, not everything you read here will affect you. Sjogren's is an individual disease and no two people present the same exact way.
Bucky
Thank you Bucky. The diagnosis is new - but the symptoms aren't. I've been dealing with tangled web of auto-immune diseases for 20 years - but nobody knew what to call it except "Fibromyalgia"....When the Sjogrens and Lupus finally raised it's ugly head last year and I tested positive, I said a bittersweet "Hallelujah." (No more guessing and thinking I was crazy!)
I've been in several forums over the years.... but the one I was most active in was "We Are FMily".... I was one of the original members. A lot has certainly changed since then, and it is a little more confusing when trying to find your way around. But I'm picking it up a little at a time. :)
Hi Byn, and welcome. I have the hangover headaches all of the time. It stinks that we are not able to earn them, lol. My stomach and mouth do not do well with alcohol.
This forum is interesting, its nice to belong somewhere. My family still does not get it. Just last week my middle child, who is very blunt, told me to just get off all the meds and I would feel better. I really thought of the 3 she got it. Guess not so much.
I am wondering if all or most of us have the reactions to meds. I have horrible side effects to so many meds. They laugh at me at the pain clinic when someone new goes over the list. Not just little ones, things like elevated heart rates, swollen lips and tongue, swollen speckled legs clear to the knees! Wonder if its a SjS thing.
The hardest part is feeling cruddy all of the time. Some days are better than others, but lately most are cruddy. I think we all go on because it is what we do but it would sure be nice to have a couple of days when we could wake up and say how great we feel! I think our back burner days are other peoples bad days, and our bad days would snow them clear under. At least here on the forum people get it and that is a big help.
Welcome, and good to see you here! As the others have said, not a good thing but a place to feel normal.
I think it would be neat to know what state or country people are from, and if symptoms differ in different climates. I am in Ohio the Black Swamp of the US. I have been told this is a horrible area for SjS patients from several doctors. We are a sinus nightmare here.
Hangovers usually come from lack of hydration. Could it be that you do not have enough pure water in your system? Not flavored or carbonated drinks.
Hello Byn,
Just wanted to wish you a very late Welcome!! ;)
I apologize for not doing that before; geesh, I've been behind this month. I hope you're enjoying this crazy, friendly, informative, supportive bunch. We discuss almost everything and it has been a blessing to me, as I hope it will be for you.
Yes, it's tough when our symptoms finally smack us in the face, so to speak. Mine did something similar. Certainly makes you take notice, huh? :) I see you're newly on Plaquenil, and so glad that you're not seeing any big side effects. It can take some time to see benefits, as I'm sure you've heard, so hang in there and hopefully you'll begin to feel better. For me, it does help the fatigue and also the dry mouth somewhat.
Iwantmylifeback,
I'm glad that you've found us here, too. :) It IS nice to feel we belong with others who really understand. I think it's one of the best things about being here. I'm sorry that your family is not "getting it." I'm sure that was tough to hear from your middle child that getting off the meds would help.
After a couple of years of this, and having better luck with some than others, I've decided that most people really cannot understand truly unless they have experienced something similar. But I hope in time your family can come to some understanding.
I still see my husband occasionally give me that "oh, yeah" look. For example, over the weekend I was planning to go get groceries. I told him I needed a shower and we needed things from the store, but I was deciding how to do this. He said "Well, take a shower and then go." Like it was that easy! I told him (gently) that I had to pick one. If I took a shower, then I'd be worn out and have to rest. So, I couldn't do both things back to back.
There was the "oh, yeah" look; the one that says I'm sorry, I forgot you can't jump and run like me anymore. I got out a handful of spoons; real ones from the kitchen and handed them to him, and explained how this works again. He said, yes, I forget sometimes. I'm sorry. No big deal. I washed my face, brushed my hair and went to get groceries.
I am from the Black Swamp! Southwestern Ohio to be exact, although I've lived in SE Kentucky for the last 4 years. Yes, the allergy capital of Ohio, the sinus problem capital...I know, I know. It's nearly the same here, except we have more trees and hills. And spring and fall mean literally turning off the AC and turning on the heat in the same afternoon.
Hope you both are having a somewhat decent day. Keep us posted.
Melinda
Joe, I've wondered that myself and this week I've decided to try drinking more water and see if it helps.
I wake up with a hangover-headache every morning (I get up at 5:30) but it's usually gone by ten or so. I've had it as long as I can remember, even as a very young child. I thought everyone had it and was surprised when I went to college my roommate told me she'd never had a headache and couldn't even imagine what it would feel like! I was shocked!
Thanks for the suggestion/reminder.
Byn, welcome to this great forum! You'll make lots of good friends and learn a lot, and sometimes you'll be able to post something that'll help someone else!
By the way, I also take Plaquenil and I think that medicine is a miracle! I hope you have the same good affect; too bad it takes about six months or so to see a real difference. Hang in there, and post away!
Thank you everybody. Been there, done that with the family/friends not understanding. Lots of history in that department for me. I've been in that very spot. My EX-husband didn't understand - nor did he care. My kids took his view because that is what he taught them.... but NOW I have a very understanding and supportive husband.... and my kids are adults and understand a little better. All is good.
Joe.... you are probably more correct than we'd like to believe regarding "Aqua and Hangovers" .... My husband is ALWAYS pushing the water jug my direction! He has even began grabbing two and handing one to me whenever he is thirsty. (I have a wonderful husband who takes good care of me).
I grew up in Houston/Galveston area (around all the refineries).... moved to Southeastern Oklahoma for 25+ years (Allergy Central).... and now I'm back on the Texas Coastline (Houston/Galveston). I honestly DO believe allergens and chemicals have EVERYTHING to do with our auto-immune diseases. We (as a whole) have poisoned ourselves... some are just more susceptible than others.
I drink filtered water. Fluoride poisoning is similar to Fibromyalgia. I sip-swish-swallow all day and night to stay hydrated. Mouth breathing drys me out.
I drink purified water too.... not spring or mineral... only PURIFIED. I am pretty picky about my bottled water. If it taste like plastic (from being left outside in the heat), or dirty (like tap water) I can't drink it.
Good for you. We have a large filter that we have to change every year or when I start tasting chemicals.
I was a board member of a Moorhead Water Resource Task force.The water that went into the river had to be more pure than the water that came out of our tap.
My daughter found a drinking glass with a filter.... very cool! I keep forgetting to ask her where she got it.
Hi Byn,
Let me also welcome you to the SJS World and family!
I'm glad that you've had a chance to look around as I think that this is a pretty amazing board!
The others have given you some great advice and if you can't find what you're looking for, don't be shy and ask way...there is usually someone about that just might be able to help.
Take care of yourself now -
Patze
I have found that if my water intake falls below 80 oz a day that the hangover headache is back. I have also noticed that with this amount of fluid my edema is much less. I used to carry around impressions of anything my legs touched. I can only assume that the swelling in my joints is only helped by this as well. Good luck to you. It hurts but having a diagnosis and validation for your symptoms, to me, was better than that feeling of hypocondria. Even when you KNOW there is something wrong with your body, until the MD puts a name to it, it seems like no one takes it seriously. This is a great group of individuals and I know that you will find so much wisdom here. Glad you joined even if I wish it was just out of curiosity.
Thanks Patze and Monthmonopoly. 8)