Hi I'm a newbie and a bit ovewhelmed

[Navigator]

Hi

I have the greatest admiration to you all. I am newly diagnosed although I've had well controlled Hashimotos Thyroiditis for about 25 years. I knew another shoe would drop someday and here it is.  I had an amazing attack in June...the whole nine yards..neuropathy,pains moving around in the neck and shoulders..so bad I couldn't sleep or do anything, dry eyes, dry mouth, pins and needles in both arms, hard time swallowing, lost appetite, but then one night it just went away (well there is now  dry eyes and dry mouth and I've lost my appetite (things feel stuck in my throat) and about 13 pounds lost, tingling is now rare, but no pain)..it sent me to the doctor who sent me to a neurologist...to end up at a rhem. and the diagnosis.  I am panicked that it might come back like that June.

So far I am on high dose Vit.D and have perscriptions for pain and predinizone if that comes back..and told to call if any pain returns. He is reseving the plaquenil for pain returning.

I went to an opthamologist who said just keep using the over the counter drops until it gets sooo frequest that maybe plugs or Rastasis.  The eye problem bothers me the most because it was so sudden. I guess I just need to get used to it.

Any advice on what has worked best for the eyes?

I am awash in vitamins, Fish oil, Flaxseed oil, and Green tea and water.  I am so freaked out about the pain returning.
Anyone else try these kinds of things to keep it from progressing quickly?

[Bigmama]

Hi,

Just learned this week that 3000 mg of Fish Oil are needed to help with the eyes.  I was already taking 2000 for my "brain fog".  I no longer produce tears at all, so had my puncta cautorized and use tears constantly...looking into Lacrilube.

Good Luck!

[Scottietottie]

Hi Navigator 

Welcome to Sjogren's world!  I also have Hashimoto's thyroiditis but its not always under control. The general pain is certainly better when it is!

It is possible that some of the pain and the neuropathy/tingling is Vit D deficiency and if you're being supplemented that won't return! It can cause muscle weakness also.

I agree with Bigmamma that 3000mg daily of fish oil is helpful with the eyes. I also believe being on Plaquenil has helped. My oopthamologist helped me by giving me a daily cleansing routine for eyes. He also put me on a tapering dose of Prednisolone drops that lasted for about a month. I've never had Restasis although I've read it's very helpful if your eyes are so bad that you have corneal damage. it will heal. I like celluvisc and I also have been known to use Lacrilube at night but since the drops and the daily fish oil - I haven't needed to.

None of us know when the next 'flare' is conming. Some have them often and others can go months - or even years - without them happening.

Take care - Scottie 

[lynnmarie219]

Hi Navigator and Welcome to Sjogrens World!

I use Restasis and over the counter drops and gels for my dry eyes.....it becomes a very individual thing as to which eye drops/gels will work best for each of us...its trial and error. Maybe you can get some samples from your eye doctor to try some different types before you buy a full size bottle as they can get pretty expensive!

Try not to worry about the future and what it will bring...I know that's much easier said than done...but it is true as Scottie said...that we just never know what will come day to day when dealing with this autoimmune stuff. But worrying and stressing about it will do you no good either as stress can bring out more flares or symptoms....so it can become a vicious circle if we aren't careful.

Read all that you want and ask any questions that come to mind.....there is a lot of information, support and friendship to be found here.

[Poochie]

Hi Nav,
Welcome to Sjogren's World!  I hope you find the information and friendship that is so great here.  If you can't find an answer to something, just ask.  Someone will either have the answer or let you know where to find it.

I had a terrible time with my eyes.  Corneal abrasions, pain, spinning silver disks in my viewing space.  Not fun.  My opthalmologist put me on Restasis and for the first 3-4 months I thought I would scream it hurt so bad, but I hung in there and my eyes healed very well. 

I still use them at night before bed, but mostly I just use my OTC drops during the day.  I also have my lower lids plugged, which has made a real difference. 

I use the Restasis and during the day the drops and when I'm feeling gritty, I use the gel drops at bedtime.  Also warm water rinse in the morning to remove any crust or grit that builds during the night.  Some of us use baby shampoo to cleanse the lids. 

Take care and come often,

Pooh

[Patze]

Hi Navigator,

Let me also welcome you to the SJS World!  Please do look around the board as there are tons of topics that just might answer some of your questions.  And let's not even mention the tons of great members either!

I have a lot of eye issues too, and have tried Doxycycline and came of hypersensitive to it, so had to go on Restasis now (better than four years now).  I too use OTC preservative free drops and gels - it depends on on what works for that day/moment as to what OTC one I will be using (I must have a dozen bottles in my fridge; it keeps it cool and feels so good on dry/burning eyes).  I too have my lower lids plugged and am getting the upper left eye plugged too (the right eye is not as bad as the left).

I too take 50,000 units of Vitamin D once a month, until the next blood test and it gets bumped up to once a week for a while and the cycle keeps repeating.  Ugh!

I too take fish oil, and flaxseed oil when the stomach is not to bad along with B-12 and Folic acid (the last two are prescribed by the neuro); two many doctors!!!!!

Again, welcome and I hope to chat with you soon!

Take care -

Patze