Hi, New Here, and Have Questions...

[Ripvanann]

Hi Everyone. New here, and also newly diagnosed with Sjogren's. A little about myself: I'm a 40 yr old wife and mom to 5 children, ranging in ages 2 (twins) to 10. I home schooled all of them, but we're choosing to cyber school this year, as I'm just too sick to handle it. We also have a sun conure parrot, named Stella (she rocks!) and FIVE chickens (including a psycho rooster who's been dubbed Darth Ricco)... basically I'm off of my rocker... with no hopes of getting back on!   

I changed rheumatologists back in January, after seeing a very nice, but not proactive Rheumatologist before him. After changing rheumatolgists, I almost immediately began showing symptoms of Sjogren's Syndrome. My parotid glands are always swollen, dry mouth, sores, dry eyes, unexplained rashes... the works. I was sent to pain management, and despite my begging for prednisone (the only thing that helps me to function), the doctor will only prescribe me more REALLY strong pain medication. I'm on methotrexate as well, and I do think that has helped a bit.

Prior to any physical manifestations of disease (other than pain, and Raynaud's symptoms), all of my labs were normal (and as of January, they still were, other than low vitamin D). My new Rheumatologist thinks that the excruciating, all over pain, is due to the Sjogren's. I also have bright red burning feet, that he thinks is from this as well. Basically he thinks all of my symptoms are due to Sjogren's. He also , at one point, looked at my nail folds and said that they were "borderline" for sclerodermna, but did/does not think that I have it.

I'm also having a lot of numbing and I'm losing control of my tongue when I speak. My rheumatologist thought that this was from the swelling, but 3 Ear Nose and Throat doctors said that it is not. I had an MRI of my head last week, for which I'm still waiting for the results. I wonder if the technician did not see something, as she asked me (after she pulled me out of the MRI machine) what it was that I was diagnosed with, and what it did to a person. Maybe just making small talk? Does anyone know if they get back to you faster if they see something?

**** Question here: So during one of my rash breakouts, I took pictures of all of the rashes. I had red patches that were not raised. Then what looked to be a prickly heat, or a drug reaction, all over my body, and one large pustule on my forefinger. I saw my rheumatologist a week after this happened, showed him photos, and he said that it was vasculitis (the pustule on my finger, not the other stuff). It has been about a month and half since then, and my fingers are covered in hard, painful lumps. They burn and itch sometimes as well. When they burn, they burn like crazy. They usually start off red (but not always, sometimes it's just painful there, and a lump appears). The first pustule I got is still there, but is a colorless lump that is not painful. Both of my forefingers are the worst, and the skin is much darker on those fingers. The skin peels continually and is very hard and calloused. It's becoming increasingly more difficult to maneuver those forefingers... It feels like they are slowly dying, and that's the only way I can describe it. Does this sound familiar to anyone?

I'm sorry this is so long!  I'm just so desperate to find out what is going on with me. I seriously feel as though I'm dying, and that they will not find out what is wrong with me until the autopsy. My pain management doctor is also treating me for fibromylagia, and insists that this is just a really severe case of it. He insists that the increasing pain, is part of it. That I will live with this pain (barring a miracle) for the rest of my life. I could accept that if I weren't deteriorating. Last year at this time, 1/100 of the pain medicine I'm on right now, would have made me functional... I'm just looking for someone to say "Oh, the SAME thing happened to me, and here's what..."

Thank you for reading this! Peace and blessings to you all. ~Andrea

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[kc]

Look up CREST Syndrom.  Doing this from phone

[Joe S.]

Welcome Andrea. I did not get my Dr to say Sjogren's or Sicca until I asked the question "Dry eyes, dry nose, dry mouth, dry skin, dry A$$ what do you think it is?"

I use alternative therapies like carrot juice, Alpha lipoic acid, acetyl L carnitine, Tart cherry extract and d3 supplements (talk to your health care professional before trying).

If you can have a negative reaction to a medication I have a good chance of having it.

Don't panic
Breathe
Meditate

[buddybelle]

Welcome:

I am newly diagnosed as well and have found this site extremely useful. There is a wealth of information amongst all those who post.

I have a question for you. Speaking of rashes, I have been getting red, at times painful and itchy lumps (they almost look like big underground zits on my arms and back. Do you or does anyone know if this is part of SJS?

Thanks,
Buddybelle

[4Kids]

Yikes, I thought I had it bad. I have four between almost nine and two. Hugs to you.

I am new to this, I really wish I had some advice for you. Do you need help with the dry eyes and mouth, ie Restasis for your eyes, and Duratears or Systane ultra? They work really well as does getting an opthamologist see you to see if you need steroids drops.

For my mouth I am on Salagen 6 times a day. Eight weeks later progress is slow. I used Mouthkote and the Oral Balance gel to help when it was dry. I have salivasure from scandinavianformulas website and it helps quite a bit, as does OraMoist.

I too am being treated for fibromaylsia but am not sure I have it.  I do not have chronic pain except bursts but my kids have sleep issues and she wonders if this is because of that.

She didn't want to give me Plaquenil yet, but to try the stuff to sleep better.

I take cod liver oil from Costco three  times a day, two giant pills each time. I also take vitamin e with it each time.  This helps immensely with they dryness. If I don't take it my eyes and mouth seize sort of and get much dryer.

That's all I know.  I would get Plaquenil as fast as I could if I were you. My goodness you must be having a rough time.

[KellyG999]

Welcome to our little "club." This is a great group of people who, quite frankly, seem to know more than all the doctors I have seen so far.

I wish I had a few words of wisdom for you. I finally couldn't take dealing with daily episodes of mouth/tongue and throat swelling while working a FT high-stress corporate job. In a few days, I start a 10 week FMLA. I am not sure how you can possibly take a break, since all your "action" seems to be at home. God bless you with all the young children! Can anyone help with them or the chores?

When I find a real diagnosis and a treatment plan that works, I'll let you know. Until then, we'll all just stick together and help each other.

KellyG

[Meld256]

Hi Andrea,

I'm very late with this, but allow me to Welcome you to Sjogren's World!   

I try to welcome each new person, and so I apologize; your first post just slipped by me somehow. I am glad that you found us here. It's a very informative site, friendly people and encouragement and support. 
We know what it's like to have strange things happen to your body and not know why! 

I see that you had an MRI; had you received the results of that by any chance? Wondering if you'd like to tell us more. You said the pain management people think you have severe Fibromyalgia; these autoimmune things can overlap and cause us a huge amount of pain and discomfort.

Again, I'm sorry I'm just now responding.  Please update us if you like. We look forward to hearing more from you. People here care and understand.  We're all on this little journey together...
Take care,
Melinda

[jason]

buddybelle - I have been getting red, at times painful and itchy lumps (they almost look like big underground zits on my arms and back.

I wish I had some wisdom for you, but I haven't found a solution to my "zits".  Mine actually come to a head and scab over and more zits  form under the scab and on and on.  They itch like crazy - I have to cover them with a bandaid at night to keep from scratching them in my sleep (scratching just seems to make the affected area get bigger). They are only on my upper arms and generally only show up just before I come down with a sinus infection or bronchitis or some other respiratory infection.  A dermatologist said it was keratinitis and had had me using Halog - a steroid ointment - but not much help.  The best thing I've found is a combination of an antibiotic cream and a steroid cream or ointment.  Still they leave big white scars that are sometimes sunken.

[buddybelle]

Jason,
Thanks for the input. It is just strange to have these bumps pop up at the same time as the other symptoms. I feel like I am going through my teens again!
Buddybelle

[Scottietottie]

Hi Andrea 

Welcome to Sjogren's world. (Somewhat belatedly - sorry!)

Most of us have picked up quite a few 'ologists' along the way. It sounds as though you could do with a dermatologist and a neurologist as well as a rheumatologist and an opthamologist. I can't imagine how tired you must be with 5 kids but I can totally understand that homeschooling would be too much!

I hope you find the site useful.

Take care - Scottie 

[bloodless]

Welcome. You sound like you're having a difficult time. With that much skin involvement, I'm wondering why you haven't mentioned a dermatologist. If your rhuemy has not referred you to one, have him/her or your primary care taker refer you to one. Please don't continue to suffer quietly. Sometimes medical professionals don't seem to get moving until you are insistent.

[Narablueeyes]

Welcome Andrea!! 

Bless yer heart!!  I wish I had worthy advice but I'm still in the sorta new stage myself.  I will be sending positive thoughts your way daily!!