New To This

[flutterfly]

 MIKELLY~i know ur new ta the tree^house...so i will just tell ya...me & ※sha※ are real~life twinzies & i get that same rash only sumtimes way SEVERE!

when sha ended up w/it & tol' me 'bout that cream/lotion i called horse^sh#t on it 'cause i'd tried just 'bout everythin' 4 itch & dryness/peelin...but was desperate so broke down & bought it!
(9 bucks in wa. state) but was SOOO worth it! 

there i admitted ur right sha bebe!

weirdies are @ least soft when it peels! 

~*flutterfly...hates admittin' when sha's right...but can't deny cream works!*~ 

[Meld256]

Hi Mikelly,

Welcome to the forum!    I'm sorry to hear you've having so many difficulties. You've found a good group of people here who care, will inform and encourage you. I've only been here since July and it's helped me so much.

So, with that said, myself and everyone here understand the feeling that you are in your 40's and feel 143. It's enough to really surprise us when we've been able to do anything we want or need to do and suddenly getting showered or dressed is a chore.
Many of us have lots of "issues" like you. It takes some time to sort out what will help, so we need lots of patience with all this. I know; easier said than done! 

I know someone asked about an opthamologist. If your eyes are very dry, they are the one to help. I began with conjuntivitis because my eyes were sooo dry. My opthamo. put me on Restasis right away and a few months later, the dryness was much better. Great info. here about how to care for your eyes.
I also have a Fibro./ Sjogren's combo and know the aches and pains well. Your doctors should be able to prescribe some drugs to help with some of the pain.

Please keep us updated, and look around the board. Remember you're not alone and ask anything you like at any time.

Take care,
Melinda

[mikelly]

Thanks everyone - I am still struggling on how to reply to who so... With regard to the blepharitis, the optho did not indicate what started it.  I try to be very careful what I use on my face, especially the eye area. If the plaquenil is helping anything I think it may be that and the terrible rash I was getting around my eyes, if it is possible that it helps that. As far as the aches and pains, they are actually getting worse. My upper arms and thighs hurt so bad I could cry half the time. It is truly amazing that I can get up, get everyone ready and get out of the house to work. Sometimes I just stand in the shower and can't even think about getting out to start the day. My sister keeps telling me a new normal is around th corner and I will learn to adapt and know my limits but I do not know. This is hard - very hard and frustrating. I am glad that I have a place to vent and where the people understand.

[Meld256]

mikelly,

Don't worry about how to reply to each of us. If you want to, though, just click that little "reply" on the right side of a post or put a name. But it's not necessary...

I hope the Plaquenil begins helping you.  I can really relate to the pain in the upper arms and thighs, and elsewhere. I went through a time just trying to lie down to sleep on my shoulder or arm would almost bring tears to my eyes. Seemed like every muscle in my body hurt. I've stood in the shower wondering how the heck I was going to be able to get dressed and go to work that day, much less make it through the day.

Please let your doctor know what kind of pain you're in. I know it's frustrating; I know it's hard to look ahead to better days being possible. Fibro. pain can be really awful...I know this sounds so simple but just a suggestion. If you have a tub, run a hot bath with about a cup of good old-fashioned Epsom Salts and soak for a while. For some of us, it really helps temporarily.

We DO understand... you have a place here to vent anytime. I hope we can be of encouragement and support to you. 
Blessings,
Melinda

[balor123]

Also used to be a go getter but I can't even work more than 40hrs now and I'm only 30. Would have liked to do a startup but that's off the table now. I also have tingling and blepharitis. My optho also said it couldn't be SJS because I can still swallow without trouble. Doctors just don't understand these symptoms. My observation so far is that they come on bad and then wane slowly for months.

As to the rash, I believe that is a sign of Lupus, no?

[Meld256]

Hi balor123,

If I missed you before, let me welcome you to the flock!    Your opthamologist said it can't be Sjogren's because you can still swallow; wow...what No, a lot of doctors do not understand symptoms, they don't know a lot about Sjogren's and are just "clueless".
My primary guy told me that I couldn't have Sjogren's because I had no blood markers to prove it. Sure...

Have you been diagnosed as of yet? Just wondering. Keep up your fight to find out what's happening and keep us posted.
Take care,
Melinda

[Patze]

Hi Mel, got to love your primary!  Wonder what he thinks of the 30 percent that never test positive but have all of the symptoms? 

Hi Balor, I love your opthamologist  , good grief.  You can't have SJS because you can swallow?  Wow, that's a bit different....

Take care of yourselves -

Patze

[quietdynamics]

mikelly...Hello, yes this condition is so frustrating! Feels like you get a symptom, come to terms with it...it goes poof. And then an entirely new symptom. I feel like my condition is running my life. I miss being active and spontaneous  .

I have the rash you mention. And in the shower I HAVE to buff puff my body or I feel unclean. Virgin olive oil after a shower helps, it dissolves oils, softens dry skin and naturally has antioxidants in it, and you probably already have some. It is not oily or greasy on you skin and is absorbed. The soles of my feet have gotten really dry, we had some "Miracle of Aloe" (husband has diabetes) I was very happy with the immediate results. And, after a few days used it on the facial rash, and, again I was very surprised at how it 1. helped, 2. how quickly.  I have also learned that the rash for me is a sign that I need to slow down.

Unbalance: I had episode of  this and was literally falling to my left. Went to ER (no stroke), followed up with Dr.,....no answers.  Then after a long while it stopped? Clueless.

I am prescribed Cymbalta and neurontin, and that has helped with the pain, which used to keep me awake at night. And I have found that when sleep is disturbed, it sets everything off. Plaquinel takes time is an autoimmune suppressant and anti-inflammatory. 

As mentioned, I was an active person, and had a fit body. I too gained weight, but was eating very little, as I was so neasuous. I thought "if I am not going to feel well can I at least look like ME!!" Eventually, a medical friend mentioned "Metabolism Miracle" and it was easy for me to understand and do. I learn that I was putting my self in starvation mode, and stressing organs. Anyway I have lost 17lbs, and am not retaining water. Diabetic hubby is doing some of it and his sugar levels are so good his doctor says "keep doing what ever you are doing!"

I hope some of this helps.Barbara

[Meld256]

Patze,

I should have clarified that this guy was my "former pcp"!   He said this just before I learned that you can be sero-negative. He actually said (at the same appt.) that people can go 2 or 3 yrs. before it shows on blood work. So...I'm supposed to get worse and worse while we wait   I don't think so!

Then he asked how the Relafen was helping my joint pain. I told him maybe by 25% and he said, dryly, "well, Melinda we can't hope for 100%"  That was my last appt. and I will not be back!

Ironically, I was sent the next week to a pcp for my medical exam with my SS Disability claim. He looked at my file, with all my eye problems, my teeth, my recent test result showing a partoid infection, asked me questions a few minutes, and asked "So, are you being treated for Sjogren's?"  I almost fell off the exam table!! 
He listened, was kind, and promised to help me however he can. I called the old pcp that day and had all my medical history faxed over to his office as a new patient.  I feel blessed to have found him.
Take care, all

Melinda

[Patze]

Bravo Mel, bravo!!!  Lucky you!!!  Can you tell that I'm jealous?   I too am so glad that you've found a good doctor, and I'll keep my fingers crossed that it works out for you.

Hugs and such -

Patze