Get me through this!!

[susanep]

Ark Mom, welcome to the board, but I am so sorry for all you are having to go through. Many of us have to see a psychiatrist for meds to help with depression, anxiety or both. Looking back I do think the autoimmune diseases probably brought on the clinical depression for me.

I also understand about wanting to be understood by Dr.'s that haven't picked up on this yet, and the husband thing. My current husband is wonderful, and has his own issues with health. We try to help each other, but my ex-husband was the same as you said. He never even got sick so couldn't understand, and not able to do something equaled lazy.

Please hang in there, and come back as often as you need to, but never give up, there is always a new day, and with it a better day ahead for you. Believe me, I know for a fact this is true.

susanep

[soycoffee]

Hello everyone!  This is my first post.
. . .
My skin is burning all over.  Things have actually gotten worse today rather than better.  I feel like I am ready to die.  I am using all of the dry mouth products.  I'm drinking tons of water, using warm compresses on my eyes and tons of various drops.   I'm not sleeping, even though I took Ambien last night.  I am hardly eating due to no appetite. 

The burning skin -- is it in the areas exposed to light, any light? Then it may be due to UVB (and some UVA) rays from fluorescent lights for someone who works or shops or goes anywhere commercial.
BUT it may also be due to Compact Fluorescent Lightbulbs (CFL bulbs). These are the energy efficient bulbs that I used to replace every light bulb in my apartment!

I got a fairly severe facial sunburn from a high intensity CFL bulb used in a reading lamp. I was testing the bulb again, and got a burn on my shoulder, where the light fell most intensely, that day. My burns are the type that shows up in skin reddening. Apparently the one on my back, which was quite painful, but small in area, didn't appear red to my rheumatologist; he didn't comment. It *did* burn like heck.

This, I believe, is an undocumented feature of Sjögren's, that also can occur in Lupus, and has been tracked to the SS-A (Ro) Antibody, I believe.

I consulted two rheumatologists about this, one by phone. They did not seem to think it was part of the picture of Sjögren's, and didn't mention Lupus.

The UVB rays can penetrate light clothing, so it doesn't have to be "sunburn" (i.e. UV burn) only on exposed areas.

If I've sold you on that being what it is, what do you do about it.

1. Sunscreen indoors and outdoors at all times.
2. Cover up with clothing, hats, floppy slouch hats -- indoors in a flare, and outdoors all the time. Hoodies are good.
3. I used A+D ointment to ease the pain somewhat -- it's mostly vaseline, so you could use that if you have it on hand.
4. For repair of the burned skin I'm using, at various times, Shea Oil, Vitamin E Oil, and/or Almond Oil. The almond oil is the easiest and quickest to use, with kids around, because you can wash your hands, use a few drops, and it sinks in, right away. You can also put Vitamin E oil on your face without worrying about it not sinking in right away.

I'm sure others have some further suggestions for care. The burning does seem to be connected with minor and major flares, as the reports on this forum tell. I don't know what the best search term is, though.

I'll just list a few to put them in this post -- sunburn, sun burn, CFL bulbs, fluorescent light, photosensitive or photosensitivity, light sensitive.

If this does not seem to be diagnostic of your problem, and it continues, please post some more and someone else will recognize the specific features of your burning.

There are solutions, if not cures,
Soycoffee

An aside. Do you also have an itchy scalp with this flare? I've had one for several years and mine went away when I started covering my head.

[Ark mom]

Soy coffee, I appreciate your detailed information regarding the burns.  Very interesting, indeed!   Thank you!

Actually, the prednisone has really kicked in.  Everything has stopped burning.  Chills are gone and aches are almost gone.  My eyes are still dry and irritated but not as badly.  My mouth feels much better and is less dry and not burning.  I put on wrap around sunglasses to protect my eyes and went out into the backyard to play with the girls, basically the first time I have been off the couch since I went to the ER.  I was afraid to go outside in the wind, but the sunglasses really helped.  Even though I am still sick feeling I can't believe that a few hours ago I felt like I was dying. 

Thank you to everyone who, as complete strangers, took the time and energy to write and help me.  I will update tomorrow after my appointment with my GP.  Hugs to everyone!

[GeorgiaGirl]

So glad that you are feeling better!  It's nice to be able to get outside and enjoy the little ones. I hope that your appointment goes well tomorrow.   

I reread my earlier post  ... it was the dr. that made the insensitive comment about me being a female getting older, not my husband.  Great bedside manner that guy has.   

On the husband topic, there have definitely been stages where mine didn't understand.  We've had some major blow-ups that have stemmed from my inability to do everything I used to do.  I think you are right that fear plays a huge part & also, I bet it's hard being the spouse looking on when there is no quick fix for all that's going on.  One thing that did help him understand was when I gave him pages & pages of blogs & forum posts from other people with similar symptoms and feelings.  I know that he did not understand that I actually mourned the loss of things I used to be able to do ... and the complete frustration of the fatigue that can come out of nowhere.

[soycoffee]

Soy coffee, I appreciate your detailed information regarding the burns.  Very interesting, indeed!   Thank you!

Actually, the prednisone has really kicked in.  Everything has stopped burning.  Chills are gone and aches are almost gone.  My eyes are still dry and irritated but not as badly.  My mouth feels much better and is less dry and not burning.  I put on wrap around sunglasses to protect my eyes and went out into the backyard to play with the girls, basically the first time I have been off the couch since I went to the ER.  I was afraid to go outside in the wind, but the sunglasses really helped.  Even though I am still sick feeling I can't believe that a few hours ago I felt like I was dying. 

Thank you to everyone who, as complete strangers, took the time and energy to write and help me.  I will update tomorrow after my appointment with my GP.  Hugs to everyone!

Thanks for taking the time to reply, especially when you are feeling better -- hooray!

I'm glad the Prednisone worked -- as it should. There is a downside to it, but the way it turns everything around in quick order is simply marvelous.

I am in awe of your ability to convince an ER doctor to give you 20 mg/day -- perhaps that's the upside of having doctor(s) in the house and family. I can't convince my rheumy to give me more than 6 mg /day, so I add supplements.

Hope your day with the GP works out well, and you get the rheumatology referral. Let us know.

Wishing you much success,
Soycoffee

[4Kids]

Morning!

Being stuck in a bad flare is awful. I had a virus last April which brought on a severe onset:  everything just shut off. I functioned pretty normally before that, and pouf! No saliva, no tears, my eyes were swollen, I had thrush everywhere because I had almost no saliva, my nose wouldn't run... on and on. Actually it was my eye doctor who got me relief:  my GP had hoped for a plugged salivary duct because most people believe the virus was the main cause. It was sort of just the trigger.

I decided to see my regular eye dr because of the dry eyes. She referred me to a specialist who gave me steroid eye drops (dexamethazone) and Restasis.  Well they fixed up like nothing in less than 10 days. He sent me to a rheumy who got me started on Salagen which took until October to work quite well (I went in June, but I was a severe case of dry mouth so you may be different).  I got Plaquinel along the way.

Honestly, once you have meds, you can learn to cope and function and live.

I have 4 kids:  2, 4 (almost 5), 7 and 9.  I am really busy and although I am not the most energetic Mom, we go places now and I run them to and from school etc.  I am LUCKY though in that I don't have joint pain. or pain of any kind.

Anyway. There is light at the end of the tunnel but you have to keep moving through it and ask your dr for meds to help. Even if you don't have Sjogren's (my bloodwork shows nothing) you need symptomatic treatment and relief.

And yes, my husband had a time with it as well.  He has learned as well as I have, has started to account for me when I am in a tired mode, and he was not an understand individual prior in this way. (he is a good person, just a spoiled person and not used to having to carry his weight.)  He has learned, for the most part now!

Good luck.

[Ark mom]

Good morning all. 

I got into my eye doctor today, one who sees SS patients.  His nurse was awful with the Schirmer test.  She got about 15 from both eyes.  I have red irritated spots on my eyes where they rubbed and irritated.  When he came in, he saw me sipping water and said, "That isn't a good sign when I see people drinking water.".

Wow, just, wow... thanks for that, buddy.

Anyway, we talked about everything that has happened.  He asked to redo the Schirmer test, and this time I was to close my eyes.  This time they were 17 and 18 mm.  He said he didn't believe that those were my basal tears, that he thought I was having reflex tearing of the lacrimal gland.  So, he told me to go see a rheumotologist and gave me a steroid eye drop and restasis. 

In a short while I will be off to my GP for that lovely portion of my day.  This is how I am spending my 39th birthday today.  LOL.  More updates later.

[soycoffee]

Thanks for the update. You know, as long as they make the right call (Restasis), it doesn't matter what they say. In commenting on your sipping water, perhaps he was noticing a small detail that suggested Sicca Syndrome (dry eye, dry mouth), and went with his clinical judgment and your report, rather than the Schirmer test. That's not a bad thing -- except you don't have a Schirmer test below 5, to take home to the doctors in your family. Ah, bummer!

The other immediate relief product, that you might get from your GP, is Salagen (pilocarpine) -- or perhaps Evoxac, which is more recent and more costly. These medicines greatly improve salivary flow.

It's interesting that there is approximately a fifty percent reserve of tears and saliva, even when they are not being produced to meet the need. For this, see The Sjogren's Book, edited by Wallace, 2012 edition -- and/or search for the reference quote I posted here. It might be of interest to the doctors in the family, though perhaps it would take some cleverness to introduce it. Or direct them to call one of the heads of the  Sjogrens Syndrome Centers -- in San Francisco, in Philadelphia, or at Johns Hopkins.

I hope this afternoon's appointment goes better than you anticipate, whatever that may be, and that you get relief and direction for the next steps.

All the best,
Soycoffee

[Ark mom]

Had a pelvic US today to look for a possible explanation for lower left quadrant pain.  The radiologist said he didn't see anything obvious, but would take a second closer look. 

I am almost off the steroids.  Last night I couldn't sleep again and had night sweats that bothered me.  I can feel that my flare is easing up somewhat, and by using the steroid eye drops has helped with the burning and pain in my eyes to a point where I can go an hour or more without drops. 

I started Restasis yesterday without any problems at all other than faint temporary blurring. 

I haven't heard anything about my current round of blood tests yet. 

My appetite is coming back, which is a good sign that my flare is winding down.  The chills are gone but a low fever remains.  I don't have my energy back, but today was the best day I have had in a week.  I usually don't have flares that last longer than a few weeks.   I have only have three major flares that have made me bedridden in 15 years, the rest have been minor. 

I'm worried that my blood work will not reveal the typical immunological markers for the disease and will have a hard time getting disease altering treatment. 

[Ark mom]

Got my labs back today, and although I won't get the exact data until tomorrow when I go to get copies, the evaluation is complete.  All labs came back normal.  ESR was 10 (ref 0-20; the only value i have so far on line).  How can I have an ESR of 10 while going through the worst flare of my life?  I know I have had this disease for over 15 years.  I don't get it.  Now, I'm sure
my GP will think I am a joke again.  I realize that my body can be making atypical autoantibodies than the ones the lab tests for but what about the ESR?  Any ideas?  My GP will not refer me to a rheumatologist, but my opthamalogist said thy he would do it.

[Gayle]

Please print what you have wrote to us, take it with you to the doctor on Monday. Let him read it and help you. I have only recently been diagnosed with Sjogrens but have been dealing with it for over 25 years. You need to know what your demon is and then you can tackle it. I understand how hard it is to fight something without a name. BUT - once you do, you will find you ARE strong and can still have the best years of your life to enjoy. It may be a bit different that you thought but still absolutely worth enjoying!
Gayle

[artsyamerican]

One thought I had was the original illness - did you take an antibiotic? I have henious reactions to drugs like Bactrim and Ceflex!

[4Kids]

It was my eye doctor who referred me to the rheumy. My GP had persisted that I was suffering from a blockage, not Sjs. Although my blood work shows a healthy woman, the rheumy treated me for symptoms and is a wonderful doctor who takes me seriously. I tell you those eye doctors are worth their weight in gold.

In my case, by the time my blood work showed my other problem (hormone imbalance due to PCOS), I was very, very ill. So I guess I get sick first and then my blood changes in response.  And there is a teensy part of me that hopes that the virus triggered an auto immune response which is going to be fully repaired and stay that way. A girl can hope, can't she?

[Ark mom]

It was my eye doctor who referred me to the rheumy. My GP had persisted that I was suffering from a blockage, not Sjs. Although my blood work shows a healthy woman, the rheumy treated me for symptoms and is a wonderful doctor who takes me seriously.

The nurse called me today to tell me all of my bloodwork was normal.  I guess I will rely on the opthamalogist's referral.  Thank you!

One thought I had was the original illness - did you take an antibiotic? I have henious reactions to drugs like Bactrim and Ceflex!

No, I didn't take anything because I had the same viral illness that everyone in my family just had.  No one else got as sick as I did! 

Thanks, Gayle, and everyone else for your comments.  I am running into a brick wall, but won't qive up.