Sjogrens World Forums

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.

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

 :-*  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! *~

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


and I sure hope that you feel better soon!

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

Patze

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,,,

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

Mick

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.

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.

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

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.

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

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 :P).  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

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.

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.

Welcome to the treehouse!!  ;D

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

 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!*~  :-*

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!  :P

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

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.

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

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?

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

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

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

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

Bravo Mel, bravo!!!  Lucky you!!!  Can you tell that I'm jealous???? ;) :D ;D  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