Update on me - Something new to try

[eyeamdry]

Hi all,
I saw my rheumatologist a couple of weeks ago.  I think I'm very slowly gaining a bit of strength that the radiation last summer knocked out of me.  I'm taking some vitamin infusions from my GP, along with B12 in them.  I'm doing Vitamin D therapy per my rheumy because I was low on it.  I'm within a couple of weeks of checking out a doc at U hosp for serum eyedrops, but not holding my hopes high for that.  I'd like to have this eye taken out, it's that bad. 

My rheumy tweaked my meds a bit to see if something would help with the trigeminal neuralgia/dry eye pain I have.  She has started me on LYRICA.  I'm on a small dose to start and will stay on this for a month or so to see if I see any benefit.  I'm pretty sure my dose will be bigger, or take the pill twice a day as opposed to the 50 mg once a day I'm on now.  She also suggested I take Mucinex twice a day.  I cannot give you the reasoning behind the Musinex.  She explained it, but I forget what she said. 

I hope to be able to wean myself off the *&&^%** Prednisone I've been on for two years.  I'll start going down 1 mg a month in a week from 5 mg to 4 mg.  I'm really hoping the Lyrica will offset the Prednisone withdrawal, although I know it's not in the same category.  Some of you might want to ask your docs about this combo for pain relief of extreme dry eye.  I take Vicodin also.   My eye is a triple whammy with lasik, cataract surgery and Sjogrens.  I'll report later on, but not for awhile.  Lucy

[quiger]

Lucy,

Sorry you are having such a problem with your eye. I hope the changes in your treatment work well for you. Let us know how you are doing when you get a chance.

quig

[irish]

Lucy, I don't blame you for wanting to have your eye removed. I am wondering if the removal of the eye will diminish the eye pain or will the pain still feel the same even though the eye is gone. A question to ask you doc. The darn neuropathies can really make havoc of a persons life. I will keep you in my prayers. Irish

[Pooh]

Lucy,
I sure hope you have as good of luck with the Lyrica as my daughter has had.  She is like a totally different person since taking it.  She was given it for her fibro.  Up till then, NOTHING was helping her. 

I am so sorry you are having such pain (still) in that eye.  I pray the pain will ease up with the new medication.  It would be so sad to lose that eye, but I understand totally why you would do it.

Take care dear and I pray things go better for you in the future.

Hugs, Pooh

[Katybarstool]

Lucy

I'm so sorry to hear you are in such pain.  Sending you hugs and positive thoughts.

Kathyx

[eyeamdry]

Today, I was at my GP's office and told the PA that "I'd just as soon have this eye taken out."  She really doesn't know about all the pain etc because she hasn't been at the office for the past 8 years.  Besides, I'm usually at the eye drs in matters of the eye.  I was bringing the GP up to date on the Lyrica I'd gotten from my rheumy.

Then I called my ophthalmologist's office to let them know I'd followed through and made the appointment for autologous serum drops.  I also told his "nurse" that "I'd like to have this eye taken out."  I've never quite put it so bluntly before, not wanting to sound like a drama queen. 

P.S. I had anouther vitamin infusion +B12 today and then went to swim exercise.  Tomorrow I have an appointment with Human Resources at a non-profit I'm looking to volunteer for.     I need to do something other than suffer from various ills.  Lucy

[Scottietottie]

Hi Lucy 

I hope the Drs 'get it' and realise just how much pain you're in. We all know - you're no drama queen. Good luck with the volunteer work. I'd go mad without my job I know. part time is enough - but it keeps me sane. Well - almost! 

Take care - Scottie 

[JannaLee]

Gee whiz Lucy,

It is good to say things bluntly sometimes.  Your remark really gets the point across!!

I'm hoping this U doc is brilliant and can do something magic for your eyes!  I'll be thinking of you during the 2nd week of June.

Janna

[Joe S.]

Lucy,
You might try {playing} the tones on this website to see if they help.
www.chakraforce.com/Tonations.html#326

[LenV]

Lucy,
I'm so sorry you are suffering so much.  I wonder if it would help to fill the eye with gel and then patch?  I know you've tried bandage contacts without success.  So have I.  I sometimes think the nightime, when I fill my eyes with gel and then put my tranquileye goggles on, is the best my eyes feel.  They have the nerve pain in them.  A prickling, tingling.  And I haven't even suffered thru the surgery.

I wish and hope for less pain for you.
Billye

[coopwall]

Eyeamdry,
Do hope you are getting more comfortable!  I think any way we can get our Drs. and nurses to understand our pain and extreme discomfort--we should go for it!  You used humor and I think that's great!---In fact, may I borrow the line??

We moved to New Mexico 5 yrs ago and my dryness has increased.  I'm ready to take my eyes out or move to the Northwest!!! (lol)  We are running entire house humidifier plus a small one in the bedroom. 

By the Way, the Mucinex helps to thin out and liquify mucous and secretions so that they do not stick in your nose, airways and lungs.  It's a great product that I have used for years.  it has reduced my attacks of sinusitis and bronchitis.

You can buy Mucinex in a cheaper, OTC brand at Walgreens or WalMart under the name Mucous Relief Tabs. 

Best of luck to you and hope you feel better.

coopwall

[awbrowne]

Mucinex (Guaifenesin) is also being tested as a treatment for fibromyalgia:

"Because of its uricosuric effect, guaifenesin was chosen in the 1990s for the experimental guaifenesin protocol - a treatment for fibromyalgia. Proponents of the guaifenesin protocol believe that it cures fibromyalgia by removing excess phosphate from the body. A lesser publicized and thus lesser known fact among fibromyalgia sufferers is that guaifenesin has skeletal muscle relaxant activity, and a form of guaifenesin known as guafenesin carbomate is used for this purpose. This may explain some of the symptomatic relief experienced by fibromyalgia sufferers who take guaifenesin."

I notice a difference, thought I take just a little.  It seems that I don't feel as stiff when I do take it. 

[eyeamdry]

Thanks for the input on Mucinex.  The doc wanted to see if it would help with the trigeminal neuralgia pain I have in and around my left eye.  We weren't looking for a systemic improvement, but I'll take all I can get.        Lucy

[faithful]

I was told to try mucinex by my ENT but when I take it, it burns my stomach.  Does anyone else have this problem?  I am willing to take it if it will help with the fullness I feel in my head and for the body aches I get throughout the night.  I havent been d/x with Fibro but my body aches at night. Once I get up in the morn and stretch it goes away.  COuld this be Fibro or what?  I have blamed it on perimenopause.
Faithfu

[irish]

faithful, I have been through perimenopause and the surgically induced menopause. There are so many magazines etc and so many times things will be blamed on menopause. If you ache at night it probably isin't related to menopause. I know that you are so concerned about the hormonal thing with the sjogrens. The doctors have long felt that sjogrens is affected by hormones, but they have not arrived at what hormones are the guilty party.

I have had autoimmune issues since age 20 or so and maybe earlier and I have to admit that hormones did play some part in my health issues. For example, I have asthma and it would always be a little worse right before my period. Also, I was really ill with autoimmune disease during my 3rd pregnancy and later on I figured out I was about 3 days pregnant when my health just went to heck and lasted the whole pregnancy and I was not well for a long time after delivery.

There are so many hormones that can affect a person. The cortisol level goes down when we go to bed and starts to rise again arouond 5 AM or so. I have always felt better if I got up around 5AM as opposed to getting up at 8AM. I don't know the reason but I am assuming it is related to the cortisol or other hormones that change with sleep.

This is something we will probably have to wait a long time for an answer. We all just have to deal with our lifestyle in a way that we can function better.Irish