scared... why are my eyes doing this?

[liv4ever]

I have had "issues" for more than three years without a definite diagnosis.  My handful of doctors are rather annoyed Im sure.. no rheumy yet tho. 
Since may 29 of last year (2010) , i have noticed that my eyes and legs seems to be reacting to my exertion level.  I noticed this on a dance floor at a wedding.  Now it is with everything I do.  My eyes get bright red with vascular veins, different than the bloodshot look.  I can feel it.  it seems to coincide with my mid to upper back squeezing pain, with severe neck stiffness and cracking.  It feels as if the left side of my neck is like swollen.    It is the scariest feeling.  I feel as if I am a walking stroke victim.  My MrI/ Cat scans show arthritis in my neck. bone spurs. I have psoriasis.  dry eye with Schirmer test of 3.   my shoulders ache..mostly left.  i get discoloring and weird sensation on right side of nose.  Stress is horrible.  It feels as if my adrenals are haywire!!  I jump at EVERYTHING!!  Driving is when I notice it immediately.  I never thought of myself as a nervous person, but I am without a doubt these days!  I am a mess.
My echo came back normal.  could this be my lungs?  I fear going to the Rheumy.. because I actually fear I will get a neg SS result. weird I know.  But I am worried this is waaaaaaaay more than SS.  My neck is sooooooooooo back.. stiff, cracking.. full.  PLEASE offer your insight!  I am desparate! 
PS .. you all are wonderful and supportive here.  my thanks to you. God bless

[eyeamdry]

In a word thyroid.  I'll have to let others comment on this.  My knowledge is negligible but your symptoms yell "thyroid."  Good luck and let us know.  Your eyes are often affected with thyroid problems.  Lucy

[irish]

Do not be afraid to see the rheumy cause no matter what happens you will at least find out something. The other thing is that if the rheumy doesn't want to treat you then you go on and find anther rheumy.

I would even add that finding an immunologist might even work out better.  They seem to be able to sort out signs and symptoms quite well. At any rate, even if you blood work is negative you still need to be treated.

I want to tell you that you can be pretty sick with some really weird things with Sjogrens. I have been dealing with some symptoms for about 12 years that are driving me crazy, causing me to lose sleep every night and I am in sleep deprivation. I have doctored until I could drop and driven my ENT crazy.

Right now I am just starting Plaquenil and used it about 10 days and it seems like maybe some inflammation is going down. Maybe, sorta, like I really hope!!!! Just to let you know I have been bloody miserable many times and had these horrible infections that are like abscesses rupturing and no one can find out where they are. I have had cat scans up the yin yang with no luck.

Do not decided that you are going to die from what you have because many times with Sjogrens we feel that way, but we don't. It is the nature of the beast. I am 68 years old and have had symptoms, fatigue, illness, infections, arthritis, cavities, lost all my teeth, had several surgeries related to sjogrens, etc, etc., and did not get diagnosed with Sjogrens until 2003. Then in 2006 I got diagnosed with several more autoimmune issues.

I thought I would die at times over the years cause I felt so terrible and worked many years feeling like I could not put one foot in front of the other plus a ton of other ailments. Sjoggies are tough people and we endure and perservere.You will not lose your mind or go crazy.

Also, be aware that people with sjogrens have a very high incidence of anxiety and depression and most of us are being treated with antidepressants. It goes with the territory. Sjoggies have more depression than lupus from what I have read. So, with allt he anxiety and other feelings your are having it sounds like you would benefit from antidepreesants. Antidepressants also help a person deal with pain better. It helps to decrease the pain and it helps a person sleep better and feel better so they can cope with the pain better. Good luck. Irish

[Meld256]

Hi liv4ever,

I'm sorry you're going through all this, but as irish suggests, please do not fear a rheumatologist.  They may be able to help with some answers.

I know it can be scary when our eyes are so red. May I ask what sort of treatments you're using for your eyes? Restasis, or other prescription drops? They can make a really big improvement.

I know you must be frustrated and afraid.  I can tell you that there is hope for some relief from pain and symptoms with the right treatment. Do you have a PCP for now that you can voice your concerns to? If you are "jumping" at everything, it sounds like you have a lot of anxiety right now.  Please tell your doctor; they can prescribe something to help.  Many of us need that type of help, even if it might be temporarily.

I'm glad that you feel you can come here to voice your concerns. We care and are here for one another.  Please take care and know that we will try to help in any way. 
Melinda

[liv4ever]

thank you for your replies!
eyeamdry- I love your screen name!  I have always come up normal on my TSH.  My thyroid does possibly show some small nodules (minimal heterogeneity within inferior thyroid gland, may represent small nodules).. whatever that means@!

meld256-  yeh I am not so afraid of the rhuemy, as it may have sounded.  I fear a pulmonary Dr!!  LOL  I was prescribed steroids for my eyes and that was it.  on my second round in 5 months.  My eyes respond to neck movements, and exertion.  major vascular red.  hurts and is ugly.   ugh... but dont we all?

irish~ so sorry about your immunes.  yes I do also lose sleep.  I am a hermit at times also.  Good to know i am not losing my mind, nor that I will!!.  I am on amitriptoline for treating possible fibro.. like I said nothing Dx'd.  What kind of surgeries did you have to have?  how terrible!  my ana and ra are normal.  it is just me that isnt

I would love to not be so jumpy, my kids sweetly say, "mom" you're scared of everything"... they enjoy startling me!  and now it halloween!  LOL
thanks peeps!

[irish]

liv, I just reread my post and I really had a chuckle. I must have been in a melodramatic mood when I wrote that. Man, it made me sound like I had one foot in the grave.

Sometimes I feel that way, but where there is life there is hope. Irish

[Still in the hunt]

my eyes bounce all over the place,, i get starlted and they bounce,, driving,, which i need to give up is a nightmare,, I feel like i;m in a motion picture that is going nuts and flickering,, cant focus on a thing,, and with the dry eyes,, its that much more worse

[Patze]

Hi Liv4ever,

Let me welcome you to the SJS World and family!  Please look around the board as there are lots of topics and scads of information that just might interest you by using the search engine located in the upper left hand side of this page.  If you don't find what you're looking for there, don't be shy and ask away as there is usually someone about about that just might be able to help.

I too understand being scared, and being sero negative makes it that much harder to get my symptoms believed and taken care of.  And I'm lucky that I've finally got a good group of doctors that work with each other to make sure that I stay as healthy as I can.

I'm not in any medical field and this is just my opinion, but I too thought like Eyeamdry, about your thyroid might be one the source of some of your problems.  I understand that your TSH is within the normal range, but so was mine when I had a goiter and multiple nodules over both sides of the thyroid (the endo did a FNA and thats where it was discovered that I have Hashimoto's (still sero negative for that too).  Talking to the ENT at the time and he said that it wasn't that unusual to have this situation, but some doctors just won't think outside of the box where the thyroid is concerned.

I have a question, why do you fear pulmonologists?  Just curious...I like both of the ones I've had and the current one has a good sense of humor and he and I can laugh about this whole mess (had to change doctors as I changed insurance and the 1st one wouldn't take it).

Do you see an opthamologist by chance?  If so, what diagnosis has he given to you?

Hang in there and I hope that you get an answer soon.

Take care of yourself, okay?

Patze

[liv4ever]

hi Patze, thank you for your welcoming.  I did go to the eye Dr. and had schirmer done, scored a whopping 3!!  He simply prescribed me steroids and OTC lubricating drops and said see you in a year.  He suggested i go back to the ENT for possible sinus disease (who prob never wants to see me again) and i did so... had MRI done of eyes... why i dont know.. passed on the dye, cuz I felt very nauseous in the tube this time.
i have swelling under right eye, i wake everyday looking like i sucked on salt cubes all night, not pretty.
I fear the pulmy because of the smokers conscience.  I have been smoking since i was a teenager, been a closet smoker for the past few years, hiding my nasty habit.  I goes days without them sticks and then have a few on other days.  So my fear is that i just may have done this to myself, I'd much rather have something else to blame! hee hee.  but seriously,   not even my mother or my kids know that i ever smoked...never mind if i become ill from it.  I am going to see a hypnotherapist very soon to hopefully finally kick this shameful addiction.  Sometimes i think smoking crack gets more respect. (sarcasm)
truth is i am having a hard time doing anything that causes exertion without my eyeball swelling with veins and my left neck swells.  i get a tightness in my back that feels like someone has a corkscrew stuck in there and is turning is clockwise causing more tightness...then my neck gets so stiff making me feel the need to crack it.  It becomes very noisy. 
anyhow.  i am trying to get the guts up to see more drs.  Just not sure i can handle my own responsiblilty.  Sorry if this doesnt make sense to any of you.  I just cant help myself.  The guilt is overwhelming me.  i of course would never feel this way toward someone else if this was their case, I just dont seem to be able to forgive myself... of most anything.  time to see a shrink too i guess
hugs~

[Patze]

Hi liv4ever,

Oh I was an out of the closet smoker for more than 20 years (a pack / pack & a half a day), and during the last two to four years cut down to less than 10 a day (prices were going up and promised kidlet I'd quit so finally did it).  I gave up the habit cold turkey on 2 January 2005; it was the hardest thing I'd done in years - whew, I sure feel for you!

Yeah the first time that I saw the pulmonologist I got the "you shouldn't have smoked" speech (this was AFTER I had already given up the habit ).  And I look at it like he was having a bad day, and he never lectured me about again (the new one hasn't ever - thankfully). 

Sometimes I think that we're way harder on ourselves than they will ever be, and besides, what is the worst that he can do?  Fire you as a patient?  If he does that than you know you didn't want to be his patient anyway (just my humble opinion).

It took going through several doctors to finally figure out what I needed to do for my own health and well being and not just accept the status quo (if you know what I mean).  It can be darn scary, and am sending you some super soft and extra fluffy

{ { { H U G S } } }
my friend, I'll keep the old fingers crossed that the hypnotherapist works out for you!

Take care of yourself -

Patze

[susanep]

Isn't it something that even when you quit smoking they still bawl you out? 

I agree with what everyone else has said. I know it is scary. I also have been more jumpy. Don't be afraid to tell your doctor everything, and keep searching.

susanep  Welcome !!

[deeindiana]

Welcome liv4ever. I'm sorry that you are dealing with all these physical problems but am glad to welcome you to this wonderful group of people.

I think most of us can identify with your fear. At times our bodies feel out of control with such mysterious ailments that it's impossible not to worry. Finding good doctors who make you feel comfortable is important. Sometimes it take visiting a couple different ones to find the right one. My first rheummy was a nightmare so I decided to see a physician at a university med center (university physicians tend to have the newest education and treatments. Things improved greatly after that.

I'm also a new fan of chiropractory.  I did a lot of research before choosing a chiropractor who is gentle and wholestic. She has some knowledge of auto-immune diseases and has helped my aches and pains so much. With your neck pain, perhaps that might be an option for you.

I hope you find some answers and peace of mind. Hang in there. *hug*
Deb

[liv4ever]

Patze..not glad you ever did it, but I like the support, I am not the only one!!  LOL! thanks!
just as DeeIndiana's quote on her profile.. "I am my own worst enemy".. SO TRUE!  I am definitely my own worst enemy!   Even with such self destructive behavior, us humans are afterall the only self destructive species, well not that I am a scientist.  But if it's not that addiction, it would be food...or gambling, shopping... I hope the hypno works! thanks to you all again for your input and understanding.. hugs~

[valene2009]

my left side of neck is worse than right too..but i sleep on my right side -my chiro said that was teh reason ?  anyway. i have been cracking my neck, back and my hands since i was a teenager... 20 years ago..thyroid levels normal.. i just figure its part of sjogrens.. hope u get to feeling better..