I want to rip my eye balls out!!!!

[DrySuffererfromCA]

I'm 43, but starting a couple of years ago, I have had dry eyes, skin, and mouth so bad that I carry a bottle of Refresh Liquidgel around me me and am constantly putting drops in.  Anyone notice your symptoms get worse at night?

I went to a R a couple years ago and he tested me from everything including lupis and everything came back as "normal."

Do you noticed Sjogrens fruuctatuing as your periods do?   A couple of years ago my OB thought I had low estrogen (also can cause dry eyes).  She put me on Estrogen and within a day, I was getting dryer and dryer and by the 4th day, my eyes were so dry I had to discontinue the Estrogen patch.  Weird thing is that when my Estrogen goes up during my cycle, the dryer I get.   I am still having normal ovulary periods.  Anyone else have this problem?

I have spent the last 4 years trying to figure out what is wrong with me. In the process I was diagnosed with Hashimoto's.   Thousands of dollars later and I am brushed off by doctor to doctor.  Even, my DH thinks I am crazy.
My symptoms are:

DRYNESS (eyes and skin (especially), and mouth (occasionally)  WORSE AT NIGHT
Feeling WARM constantly.
Brain fog
DEPRESSION
Itchy skin causing itchy bumps
Intense salt cravings 
Cravings for fats from meats
Weakness
Insomnia
FATIGUE

I FEEL LIKE I AM 90 years old!!!

Does this sound like sojren's?

[Linda196]

It makes perfect sense that, if the estrogen patch increased your symptoms, the natural rise in estrogen during your cycle would do the same.

I'm not a doctor, and can only make an educated guess, but it would almost seem that the estrogen is highlighting a deficiency in one of the other hormones, which may be contributing to your symptoms. I think I would try to see an endocrinologist about this particular issue. It may be helpful to document the changes with the estrogen patch, and keep a journal of the changes you notice based on your cycle.

[ohiolady]

I, too, have normal blood work for Sjogren's and at first got brushed off by my GP.  I have Hashimoto's but my thyroid has not failed.  My dryness was so severe and constant that eventually I was not ignored.  My rheumy feels because I have antibodies for Hashimotos that I have secondary Sjogrens.  She said with secondary, your antibodies do not always show.  The dryness is worse at night because saliva production slows in the evening and night anyway.

Have you tried Evoxac or Salagen for your mouth dryness?  Evoxac was a life saver for me.  I use Restasis for my eyes (a prescription eye drop) and I use Genteal gel at night and Thera Tears preservative free during the day.  Lately, I've been using FreshKote (a prescription eye drop) and it seems to helping as well.  Do you have plugs for your eyes?  I have those as well and they will keep tears around your eyes.  Treating the symptoms will go along way with helping you cope.  Don't let it get to you if doctors and others don't recognize the complexity and seriousness of the disease.  We all know how lifechanging it can be and you will find a lot of support here.

Hope this helps.

Anna

[missyb]

Are you anywhere near, or willing to travel to Riverside? I can give you the name of a Doc who can tell you if it is Sjs or not. You seem pretty desperate for any help but I also know Cali is a huge place so perhaps if you contact his office they can refer you to someone of his caliber in your area. I was about ready to drive to Riverside from Phoenix for a consult, and I came across a collegue here in town that I have been very satisfied with.
Let me know.
Missy

[missyb]

PS
Are you stiff upon rising the am or when sitting for a while that goes away as you being to move around?
My diagnosis was 6 years in the making and last year I had all but given up on ever figuring out what my problem was, then I went to Dr H 

[DrySuffererfromCA]

PS
Are you stiff upon rising the am or when sitting for a while that goes away as you being to move around?
My diagnosis was 6 years in the making and last year I had all but given up on ever figuring out what my problem was, then I went to Dr H 

Who is Dr. H?  The one in Riverside that you mentioned above.

[DrySuffererfromCA]

It makes perfect sense that, if the estrogen patch increased your symptoms, the natural rise in estrogen during your cycle would do the same.

I'm not a doctor, and can only make an educated guess, but it would almost seem that the estrogen is highlighting a deficiency in one of the other hormones, which may be contributing to your symptoms. I think I would try to see an endocrinologist about this particular issue. It may be helpful to document the changes with the estrogen patch, and keep a journal of the changes you notice based on your cycle.

]]

OOh, believe me, I have been to about 6 endos.  The only thing they ever found was Hashimoto's.  I have been complaining about dry eyes for years.   The only thing that I found help was with TCm (traditional chinese medicine), it made the dry eyes go away, as well as Hashimoto's.  Being $85 a week for treatment made it expensive.

I was wondering what you meant by the estrogen is highlighting another deficiency into another one?

[Linda196]

Sorry, I could have been clearer with that, couldn't I?

Hormones work in a delicate balance of estrogen, progesterone and small amounts of testosterone...if they are out of balance you can have many symptoms, and if the progesterone or testosterone are low to begin with, and only estrogen is replaced, it throws the balance off even more, for example making a mildly low progesterone or testosterone level look even lower by comparison.

If you had no demonstrated deficiency of estrogen (just your OBs thought that it may have been low), and it was supplemented anyway, that would further throw off the balance.

Did the various endos do hormone levels, checking all glands...ovaries, adrenals, thyroid, and pituitary? Deficiency on any one of them can cause a domino effect imbalance in any of the others. Sometimes a second (or seventh) opinion is necessary, in order to find the right doctor. If you have access to a university or research hospital, you may find a more aggressive approach.

The TCM does have some great approaches, but that cost would be prohibitive for me, for sure. It sounds like you had a practitioner who set up a personalized plan for you, basically bringing your body back into balance, the goal of TCM. Have you tried to use any of the individual things your practitioner used, on your own?

Please let us know how you progress with this.

[ohiolady]

Can you share with us about the TCM?

Thanks,

Anna

[Linda196]

Traditional Chinese Medicine (TCM) is a huge, comprehensive approach to health including acupuncture, massage, herbs and nutrition, as well as emotional care for total well being. It's far to extensive to simply "explain" but information is widely available online, just Google TCM or traditional Chinese medicine.