Greetings,
After a long year chasing answers about mystery symptoms (especially double vision), I have been diagnosed with Sjogren's, causing a sixth nerve palsy.
I spent last weekend reading, this week talking to a panoply of doctors, and started a Prednisone burst with Plaquenil. I'm glad there is a non surgical option for my vision, and the diagnosis makes sense of many minor mysteries with my health over the years.
That said, I'm also frustrated! I'm 37 years old, but the dry eyes developed when I was 15. Almost two years ago, during a bad URI, I got sent to the hospital and tested for mumps. I have hallux limits in a toe, and have had minor dental problems. I wish someone had put it all together before now.
Worse, I have a history of depression and anxiety. I've been trying to get it under control for a while via therapy, but it's been hampered by mental and physical fatigue that I thought was imaginary or a lack of character. That part--the realization that some of this was maybe real and not imaginary--may be the hardest.
I'm still new to this diagnosis and don't know what to make of it. My doctors are indicating that it is manageable, and I have the impression that after some months of treatment I may not need medication daily, but I'm not clear what the ramifications really are.
I'm glad this community exists.
Well I am glad that you found our forum, I am sad to welcome you to this disease. You can read some of our signatures to see what we are taking. I was young enough (4 or 5 maybe) when this started so I thought the dryness was normal. Dryness does run on my dads side of the family. It took many years to get a DX of Sjogren's. Seven years after a number of insults to my body, Fibromyalgia was DX'd. A moth on my face sent me to a Rhuemy thinking it was lupus. Seven years later I got a Sjogren's DX.
I hope your journey was not this long.
Joe,
Thank you for the welcome. I did get dry eyes as a teen, so more than 20 years ago, but the other mysterious things only showed up in the last five or so and were not horrible. I've suspected I had less stamina than I should for most of my adult life (afternoon exhaustion), but the eyesight just became an issue last spring. That forced doctors to really dig.
I'm not sure if that is a long time or not for a diagnosis. I hope the medicine kicks this into remission. Then I may know how long I've been under the weather.
Anne
Anne,
Welcome to our group. I'm glad that you at least have a diagnosis. You can't fight a problem until you know what it is.
Plaquinil is a good start. They may want to keep you on it indefinitely if it works for you. I've been on it for a couple of years and can honestly say that it has helped. Not a cure, but a definite help.
It may take you awhile to learn what is best for you in regards to treatment. Hang in there because things will get better. Not back to normal but significantly better. Please help yourself to all the good information, helpful advice, and comradery here.
There is life after Sjogren's diagnoses. 😊 I'm glad you found us.
Kathy
Hi Anne :)
Welcome to Sjogren's world. We're a friendly site! Hope you find the site useful.
Take care - Scottie :)
Thank you for the welcome! I must say reading threads has made me more nervous than I was. I had hoped with treatment to feel significantly better. Maybe not 100%, but much improved.
That said, I suspect I have been less than my best for long enough that something more modest than 100% would feel much better...
Anne,
Welcome, we are glad you found us. I was sick a long time before getting all of my diagnoses. After getting diagnosed and started Plaquenil and supplements I felt so much better.
My anxiety rears it's ugly head everytime I feel ill or even have a sniffle. It's another battle a lot of us endure.
Good luck and keep us updated!
Thanks!
I've now been on Prednisone and Plaquenil for five days. My energy is much improved, though the double vision is still there.
I find myself looking back at recent years, and how much I attributed my fatigue to a failure of willpower or possibly depression/anxiety (which I do have). I wonder now whether much more of what I've been struggling with was from Sjogren's.
In a way, finding out that there is something physically wrong (but treatable) is a relief.
Anne
Hi Anne,
Autoimmune/Immune Disorders produce Inflammation. Your Anxiety and Depression are probably in most part the result of Inflammation.
Inflammation causes: Pain, Fatigue, and Depression. I can't stress enough that most, if not all, of the conditions that we often blame 'ourselves' for, are the result of our Immune Disorders and a product of the inflammation that results.
The best evidence of this is that Prednisone is an Steroidal ANTI-INFLAMMATORY Drug. We often get some relief from NSAIDs,which are Non-Steroidal anti-inflammatory Drugs. But when inflammation is making your life a misery, Prednisone, and also Plaquenil can work wonders.
Welcome, and know that you are NOT ALONE. And that you are NOT AT FAULT. There is wondrous hope and support here.
Hugs, Elaine
Welcome Anne,
I am glad that the prednisone is helping. Don't worry when reading the different threads. Sjogren's effects each of us differently. You will tend to see the more involved or flaring folks here on the site. I know it is a relief to find out the fatigue is part of the illness. Most of us have fatigue which is variable. In fact, many of our symptoms come and go. (Can be maddening when trying to get a diagnosis..you get to the doc and the thing you called him/her for is gone & replaced with something else).
This is a great site for educating yourself and providing support.
Take Care.
SjoDry
This is such a relief to hear. Thanks to the Prednisone, I feel much more energetic in the mornings, but by afternoon I'm exhausted again, and fall asleep for hours . . . I'm not sure how fast the medication should help, but I suppose any improvement is welcome. The exhaustion that's developed for me in the last single month has been very bad.
Interesting to hear that inflammation could be tied to my anxiety and depression. I've been fighting these since I was 19, though the depression was controlled reasonably well. The anxiety just got worse and worse.
Amazing to see other things that might be connected, such my tendency to get lingering UTIs that are painful for months, even after bacteria counts are no longer there. If that, too, is connected to Sjogren's, then my medical "problems" connected to the syndrome go back to age 12.
Looking back on the things I blamed myself for . . . it's a pretty impressive list. I'd even convinced myself that I had caused my own severely chapped lips by becoming "chapstick addicted" as a teen. I spent almost a year with cracking, painful lips trying to "get off" the chapstick. Finally, I gave up because it just didn't get better.
UTIs are common to those of us with Immune Disorders. I have Interstitial Cystitis which is an inflammation of the lining of the bladder.
I had chronic UTIs and was tested and diagnosed with IC.
Eventually I found D-Mannose which is a simple sugar that is as effective as antibiotics in stopping/treating UTI's.
I take D-Mannose every day, and I haven't had a UTI in four years.
https://www.ncbi.nlm.nih.gov/pubmed/23633128
In our study, D-mannose powder had significantly reduced the risk of recurrent UTI which was no different than in Nitrofurantoin group.
https://www.ncbi.nlm.nih.gov/pubmed/27424995
CONCLUSIONS:
The results of this study suggest that D-mannose can be an effective aid in acute cystitis management and also a successful prophylactic agent in a selected population......
Best wishes, Anne
I feel surprisingly uplifted.
I had an allergy shot today, and the PA who gave it said my worsening allergies could be related to the Sjogren's.
How long does it take prednisone to come into affect? I'm quite curious to discover how many things subside as treatment continues.
I'm already feeling much better, "lighter" in the mornings, though I still get very fatigued by mid-day. I am wondering if I can expect the better energy to last longer as the treatment goes on.
Very interesting what you said Carolina about anxiety/depression can be inflammatory. We learnt in a biology lecture not long ago (I'm a nursing student) that there's new studies about inflammatory meds being used to treat anxiety & depression. (Disclaimer - The lecturer was telling us about studies he had read I am not saying people should try this & please dont) I found it really interesting.
To the original poster - sorry to hear of your diagnosis, I'm in limbo land not knowing what's wrong still but I've had fatigue for years, which the Drs put down to fibro but I'm wondering if I've had SS for years. Hope you feel better soon x
Checking in after 8 days on prednisone/paquenil.
OMG. Is this what "normal" feels like? I had no idea that I had been feeling so bad. Though I am still tired mid-afternoon, much of the rest of the day I feel . . . I can't quite say . . . physically light?
I feel like I have enough energy to do things. Last night, I cleaned half my apartment. The crippling anxiety that I've been battling for years has subsided (I'm actively treating that, too, but then I was treating it for two years before the Sjogren's diagnosis and making little progress). I sat through a major doctor's appointment yesterday feeling neutral--no heart pounding, no panic.
I had no idea how sick I was.
Hello, I am newly diagnosed also. I also have multiple cranial nerves being affected and have diplopia (double vision). You might want to ask about PT for convergence insufficiency. It is physical therapy that helps your eyes work together better to improve the double vision. I also have prisms in my glasses.
I should also mentiom that I had terrible anxiety shopping in grocery stores and driving and it had to do with my vision. If you google convergence insufficiency and anxiety you will find a number of articles. My physical therapist said it was quite common. The more tired and stressed you are the worse it gets.
Thank you, Rabbit63. I will look into exercises.
The anxiety is something that I've struggled with for over 15 years, long before the double vision started. :-\
Having my first really fatigued day since starting the Prednisone. Any suggestions on how to overcome it?
I ate, took an ibuprofen, and napped, but it wasn't enough.
I have felt so much better, it's frustrating to be exhausted again. For the first time in ages I have been feeling positive impulses to do things.
Not today. I want to crawl into bed and curl up with my cat.
Maybe I should?
Ugh ugh ugh, I feel so frustrated and alone right now. Beginning week three of treatment, but the last few days I've felt really exhausted and yucky for the first time since beginning the medication. It may just be a stomach bug, but I feel discouraged.
Please tell me it gets better.
Ok, here goes. It gets better, it gets worse, it stays the same. and then it changes again.
We have a chronic on-going condition. Many medications and interventions can make our lives better, but we will never be normal.
We will never take for granted what others do...days without fatigue, nights without pain or gluey mucus or many trips to the bathroom.
It takes a long time to accept the ups and downs. I know because I've been there, as have so many of us.,
Each regression into fatigue, pain and depression seems a shock and surprise. This cannot be! What have I done wrong.
Our Immune Systems are disordered. They are extremely complex. And so when something, however small, changes, we may experience negative results.
They key is to keep breathing, to think positively, to practice meditation. And to trust that you will feel better again, in all probability.
Read How to Be Sick, by Toni Bernhard. She is a lawyer who developed a chronic condition and had to give up her teaching. She has applied principles she learned in her Buddhist training. They are simple and beautiful.
There are so many feelings we have about our Immune Disorders: anger, resentment, guilt, sorrow. The list is endless.
Anne, it will get better. But your way of managing your Immune Disorder includes a great deal of gentleness and kindness to yourself.
Hugs, Elaine
You are tired because your body is getting exhausted from being reved up. As you taper your body will start to get back in sync., Even though you are on high dose prednisone and are highly energized you can only burn the candle at both ends so long before you poop out. You can be getting a bug also as higher risk for infections on the prednisone. Even a cold can be picked up easier. Rest and watch for illness symptoms such as chills, fever, aches, headache, etc. Good luck. Irish
Thanks. I'm trying to keep cool . . . I think the good news of finally knowing what is wrong with me (because I've not been very well for years) was so elating that feeling bad again has been rough.
I've had (sorry for the TMI) diarrhea since Monday night and nothing is helping . . . its probably a stomach bug, but it isn't clear . . . hubby had it, but it was over in 24 hours. Not for me.
I have a lot of hard questions to consider. One is how to manage my personal and professional life. I've been only able to work part time for the last five years, which is hard for someone my age (37). I should be building a new career, and instead I'm battling an ever changing slate of medical problems, each one of which is minor but which overall really restrict my life.
I feel bad for my husband.
Dear Anne, You feel sorry for your husband because you feel guilty because you aren't 'on schedule' with your plans for your life.
This is life. This is your life and it isn't what you planned. We will grieve the loss of our plans, our dreams. But so many things can change in our lives. Your husband could be the one with major changes in his hopes and dreams.
How would you react to that? This is why caring and gentleness towards ourselves and others is so important.
One point: My own husband had a very hard time accepting my 'conditions', probably because he has a strong medical background. Often medical people have the hardest time with their own family medical issues!
Now he is gentle with me, and caring and helpful. And yet he will NEVER understand what I go through.
That is why I am here on this forum, for understanding and support.
I don't know how your husband will react over time. It is one thing to deal with an 'illness' or an 'accident', is quite another to deal with a chronic condition.
In all probability you have been coping and compensating for your health issues for a long time, which is very tiring and cannot be kept up in the long run. Now you can stop, take breaths, and find your natural flow. Knowing that it may change from day to day.
I wish I could say that your husband will rise to the occasion. I cannot. But it is up to you to show him to way, as best you can.
This is bringing me tears, Anne, because we always want our family and friends to be there for us. And yet chronic illness sometimes is more than we or our family and friends can bear or understand.
I am dealing with what you see listed below my name, the hardest of which is my inability to walk without braces, and then only awkwardly and unsteadily. I was always the one who walked like a model, full of grace and ease. Self hatred and rejection are so painful. Others are kind and helpful, and I see that as condescending and rejecting! So I am struggling today with issues of my chronic conditions that in all probability you will never deal with. But our struggle is the same.
Patience. Persistence. Acceptance. And the greatest of these is acceptance.
Hugs, Elaine
Elaine, Thank you for your compassionate reply.