New To This

[mikelly]

Hi - I have been reading a lot of the posts from the background..
About a year ago, I started feeling ill - aches, pains, gained back 15 lbs of 25 that I had lost, no energy... In June I started going to my reg doctor.  To make a long story short, first I was diagnosed with hyperthyroidism, then due to irregularites in my blood, a rheumo started treating me for Sjogrens and the starting symptoms of lupus and Raynauds.  Now my endo is giving me tapazole 10 mg for my hyperthyroidism and also Synthroid because I am showing signs of hypothyroidism as well as Plaquenil and a water pill due to enema. I suffer terribly from dry eye and having a lovely rash on my forehead and between my eyebrows that protopic seems to help once in awhile.  I also have fibromyalgia.  The pain I have in my upper thighs, knees, upper arms and hands is excrutiating. The pain everywhere else is a bit over being bearable and probably because I have been dealing with it for a while. I have just started to get stomache upset and naseau. I cannot lose a pound (even though I need to lose 20) because I am too tired to exercise.  Just recently I started losing my balance or feeling lightheaded and just yesterday I fell on my son (Thank God he was not hurt).  I am so cold all the time that I feel like I could shatter if someone touches me. My toes go numb and I get pins and needles a lot.

While I like my rheumo she indicates that this is all normal and is to be expected in an autoimmune disease but.... I used to be a go getter, a I can do it all person. I work full time and have a type 1 diabetic husband and 9 year old who are both healthy and doing well. I am only 43 but feel like I am 143.  Is this all normal?  How can I get back to some type of normal.  Diabetes is black and white - high take insulin, low take food - I feel like I am all over the place though and there is not much my husband can do to help.

[eyeamdry]

You mention a rash between your eyebrows.  I've never seen anyone mention this.  I have kind of a rash with flaky skin between my brows.  I don't do anything special, just keep my face cleen and moisturize.  Lucy

[flutterfly]

   welcome sweets! um...i'm sad ta say...YES it all sounds ※normal※ 4 A.I. (asinine issues!!!)

i'm sorry! but hey @ least u found us!  most of us don't mind p.m.'s if u have questions or need ta vent & don't want it out on boards!

much luck & luv ta help ya w/ur new journey dear1! 

~*flutterfly...gettin' used ta the NEW ^broken me^! & how NOT ta break me further! *~

[Patze]

Hi Mikelly,

Let me also welcome you to the SJS World and family!  Please continue to look around the board as the ether's contain scads of information you just might useful (I know I sure do).  If you have any questions, use the search engine located in the upper left hand side of this page.  If you can't find what you're looking for, don't be shy and ask away; there is usually some one about that just might be able to help.

I know what you mean about your balance being "off".  I used to be an outdoor person and hiked a lot, and some days I can barely get out of my own way (it's a lot better than it used to be, but I still fall now and then (glad to hear that your son didn't get hurt)).

I too have awful eyes, and what are you using for them?  Have you been able to see an opthomologist yet?  If you have, what did he say about them?

Sending you some extra soft and gentle

( ( ( H U G S ) ) )
and I sure hope that you feel better soon!

Take care of yourself, and I'm glad that you've found us!

Patze

[tired of it]

Welcome to the club no one wants to be a member of, but since your here, welcome, and hope better days are ahead for you,,,

[cremer]

Welcome to this lovely forum. My advice would be read, read, and read some more.

Mick

[Joe S.]

Welcome. As cremer says, read. Some of us have posted what we are taking in our signature. I am unable to take the traditional medications for this so I list a few non-traditional items. You can start your search with those.

"Spoon theory" is a nice place to start if you are looking to understand and develop management skills.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

You can try listening to the tones for fibromyalgia. They have put many people I know into remission.
http://www.chakraforce.com/Tonations.html#329.

Lupus: http://www.chakraforce.com/Tonations.html#290.
Reynauds: http://www.chakraforce.com/Tonations.html#173.

[mikelly]

Patze,

I use Genteal liquid gel drops 4-5x day, the ointment at night, take flaxseed oil and some days it doesn't help one bit.  I have to go back to the opthomologist in March and may entertain the thought of putting the plugs in.  She wanted to do it back in September even before the diagnosis.  I suffer from blepharitis terribly and have gotten to the point where eye makeup is for very special occasions and never with mascara. It only inflames the situation. Its such a crazy thing. I keep thinking - no this is wrong - there has to be something more concrete wrong - the drs are missing something. My sister who has lupus for many years now says I am going through the denial period. She says I will get used to it. I do not know how.

[Patze]

Hi Mikelly,

What do you do to help minimize the blepharitis?  Mine has been miserable for years, but thankfully by using "Ocusoft" lens scrub wipes, things are better.

I also use warm compresses twice a day to try to open up the oil glands along my eye lashes, and several years later, mine are still clogged, ugh (I have MGD as well).

Yeah, you'll also find that several members have from one plug to having all four puncta plugged (that's where I'm at, well sometimes, as there is one plug that just will not stay in no matter what.  I've talked to the opthamologist about cauterizing that one, and as long as I still make tears, she'll hold off.  Eh, what ya goin' da do?. )

Has your doctor said if the blepharitis is caused by anything in particular?  Like rosacea, or a bacteria maybe (sometimes a cause is never really found)? 

Take care of yourself -

Patze

[Babs659]

Welcome to the Zoo!  We are all quite the specimens here.  

Just got back from the eye doctor and was diagnosed with blepharitis too.  The doctor was really good and took a long time to explain what to do.  He said to put hot compresses on my eyes at nighttime then gently massage all around the eye lids, top and bottom.  He said that will open up the glands that contain a natural lubricant fot the eyes.  I guess those glands in my eyelids are all clogged up which contributes to the dryness.
He also gave me samples of omega 3 capsules to take 4 times a day.  He said try all that for a few weeks and if it's no better he'll prescribe Restasis drops.
Hope that helps.
Patze, he indicated that Sjs causes the blepharitis.  It is a dryness issue with a gland.

[sage]

mikelly: I have returned to posting on Sjogren's forums after a long time away.  I really feel for you with all that you have going on.

I should list the various disorders and meds I take but it scares me to do that!  But should I say, -  sjogren's syndrome from being diagnosed long time ago, untreated low thyroid for toooo long, and open heart surgery - that should be enough for starters!  I am just beginning to understand the significance of thyroid imbalance and/or autoimmunity and how there is a connection with sjogren's syndrome.

mikelly said:
"Now my endo is giving me tapazole 10 mg for my hyperthyroidism and also Synthroid because I am showing signs of hypothyroidism as well as Plaquenil and a water pill due to enema."

- here is a website that might provide you with more information about this seriously strong drug:
http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=7678

I have noted on some thyroid discussion websites re taking sythroid and tapazole that it needs to be monitored very carefully - your endo needs to get some more input from you so you can have regular blood testing.

I hope this helps!
Sage







http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=7678

[Patze]

Hi Babs,

About SJS causing blepharitis, it seems that I get a different answer depending which opthamologist I talk to.  The last opthamologist originally didn't think that I had SJS, but "suspected" it as my eyes just did not improved that much over the couple of years I saw her (I'm still on the "dry side" of the evaporation tests ).  The current one said that MGD is another form of "dry eye", and she's noted that on my record.

I too use warm compresses twice a day and take 2-3 fish oil pills (Omega-3 & 6) every day, and nothing; everything is still status quo.  Oh well, I'll keep on giving it the old college try!

Have you seen these websites?  They list the different kinds of blepharitis, and some other good info.

http://www.allaboutvision.com/conditions/blepharitis.htm
http://www.aoa.org/x4718.xml
http://www.mayoclinic.com/health/blepharitis/DS00633

Take care of yourself -

Patze

[sarajaane]

It took the Plaquenil every bit of six months to work for me. The Restasis has just now started helping enough that I can tell a difference and it's been almost a year. You just have to keep on keeping on. It takes time. Somedays are worse than others for me.

[inga]

Given you have type 1 diabetes, I would recommend you have a work up for small fiber neuropathy.  If you haven't googles diabetic neuropathy, it may be a good time.  Pay special attention to autonomic neuropathy.  Another term you can google is dysautonomia.

[Sha]

Welcome to the treehouse!! 

I use a lotion by aveeno for a rash I get on my face....it is aveeno naturals 24 hour dehydrating source with shea +coda butter, oatmeal and antioxidants. I love this lotion cuz it is the only things that soothes the sandpaper rash that rears its ugly head now and then;)

Do you go to a neuro?  Balance issues are scary....they have been happening to me lately too. My rheumy said one step at a time but will be seeing a neuro at some point...pain is bugging me more right now.

Ask away if ya have questions!:-)

Sha