Newly diagnosed with Sjogrens at age 62

[itzmejudy]

I was diagnosed 3 weeks ago. I have had health problems for years in 2007 I was diagnosed with Alopecia, in 2007 it was Hoshimoto. Now in 2015 it is Sjogrens and Osteoarthritis. I also think I have IBS for along time. I am overwhelmed having all these diseases. I don't know what symptoms go with what disease, or if they will get worse.Will I get any more Autoimmune diseases? I am depressed, my eyes hurt, I choke on food all the time, my ears itch and are dry, I have neuropathy and hands hurt and curl up on me so I can only type with index finger and thumb. I am either constipated or can stop going. Stomach pain and headaches. I wish it would all end. I went to Opthmologist and he just said there was nothing he could do except give me eye drops. I have no family and friends do not live near me so I am alone trying to handle all this.. Sorry to be complaining. I just am stuck.

Thanks

[cccourt1942]

Bless you heart. We are here. ?

[ohiolady]

Hi and welcome to the board.  There are many things you can do to help your quality of life.  For your eyes there is a prescription called Restasis which helps a lot of us.  You can do warm compresses  and punctual  plugs for your eyes.  I take a prescription for dry mouth called Evoxac and it will help you swallow your food.  Many take Plaquenil  and also meds for neuropathy.

Don't give up!  Be your own advocate.  Make friends with the people on this board.

Take  care.

Anna

[irish]

Welcome to this forum. I have been ill for 50 years and wasn't diagnosed with Sjogrens until 2003 at age 60 years. I also have myasthenia gravis, bullous pemphigoid, Sjogrens,  Hashimotos and severely low t-cells. I have to tell you that after all these years I still don't know what is doing what to me. I have a few of the symptoms down, but there are so many things that bother me that it is a crap shoot much of the time.

Just hang in there and try not to get stressed out over it cause the symptoms come and go faster than we can figure them out. You will get a lot of information here so that should help you out some. Good luck. irish

[Head2Toe]

Hi Judy - I can really empathize with your situation and extend to you a warm welcome to this forum.

I've had mystery health problems for many years, and moved several times for my job.  I experienced a deep sense of loneliness knowing I was completely alone in a new city when I was in pain - and sometimes fearful and confused about my health.

I hope you find a sense of connectivity here.  This forum is full of amazing people and the kind of wisdom that we all wish was routinely available in medical settings

[Dolly Dimples]

Welcome Judy, your in good company here , we understand your misery having this complaint,
   so many stories as yours appear practically daily.

  I'm in the UK and do not fully understand how other countries deal with social problems such as you seem to be in.
     Surely there are social departments to turn to when one is in such great need of asistance.
      There are others here to battling with same problems,  so hope they can offer you more advice.
              Hang in there and I do hope things get better for you soon, Dolly x

   

[Kathy57]

Welcome Judy,

So sorry that this has happened to you.  Please don't give up.  There is treatment and hope.  There is a lot of wisdom here.  I know some of it will help you.  I've been helped tremenddly by the people here.  You sound like you have a complicated case, and even though I have little experience with this, many others do.

So sorry that you feel overwhelmed right now.  Be very kind to yourself and foster patience.  With proper treatment you will experience better days. 

You will find allies here.

Kathy

[SjoDry]

Welcome Judy.

Yes, this illness with all of it's crazy symptoms can be maddening. You did find a great source of support here. We all understand what you are going through, because we are living the same journey.

May I suggest that you check the Sjogren's Syndrome Foundation site to see if there is a Sjogren's support group in your area. I run a group here in Pittsburgh, and it really does help to come together with friends who understand.

The million dollar question that many of us share..is which thing is causing which thing? Sometimes we get the answer(s), and sometimes not.

I hope that you will start to get some answers/treatment that will bring you some relief soon. It is pretty much a roller coaster as far as symptoms go. Hang in there, your good days are not all gone.

Take care.
SjoDry

[MarieB]

Hi Judy,

I mainly want to say 'Welcome'!  You will find friendship here. 

Marie

[nannysbaby]

Welcome to the group.  You will learn so much it will amaze you.

Nancy

[finallyadx]

Welcome to the group  - sorry you had to find us but so very glad you did.  Sorry that you do not have anyone to "lean" on or discuss this with right there with you but we are here and we can listen and offer words of wisdom so to speak.

I totally agree with ohiolady - there are medications to help - plaquenil with aches and pains and fatigue, cevelimine for dry mouth (both presriptions) and others have said they have prescription eye drops.  You should be able to get the prescriptions from a rheumy.  I also use over the counter medications - biotene dry mouth spray and biotene dry mouth rinse as well as dry mouth spray made by biotene.  I also use spry mints that I bought on amazon. 

It is difficult to know what is causing what symptoms but hopefully in time you can figure that out and try manage the symptoms as best as you can.

Hang in there and know that you are not alone.

Sending positive thoughts your way.

[Carolina]

Oh dearest Judy!

Welcome welcome welcome.

There is so much for you to learn, and so many ways to help yourself and get the right medications.

As a general rule the treatments for autoimmune conditions are very similar, but there ARE specific treatments depending on the organ(s)/System(s) affected.

We know every single thing you are talking about!  Every one of them most of us have had at one time or another.

I don't even know where to start.  But we'll take it one step at a time.

First you need to know that you ARE NOT ALONE.  Mostly this is manageable.

I am 73, diagnosed first with Sjogren's at age 60.  Welcome to the club.

Hugs, Elaine

[itzmejudy]

Thank you all. I am on Plaquenil 200mg 2 times a day. I asked the Opthamologist about Restasis and he said no it won't work for me. He said just use Systane but I cannot afford to buy Systane. Here in Calif. SSI will not allow us to get assistance from anyone because they consider it income. They make it so you have to lie at times. I tried to be honest and told them about a meal that is delivered to my home 1 time a day M-F and now they want to deduct it from my check. I don't know how they can think that is ok. They are also going to deduct an over payment so that means I will be trying to live on $800 a month for the next 6 1/2 years to pay back $6800.00. They have to kick me when I am down. I try to eat healthy mostly fruits and vegetables but I do have a sugar addiction. I am doing better but still struggling to quit the sugar. I also know coffee and milk bother me but I didn't drink much milk but coffee is gonna take awhile but I only drink 2 cups a day, but I look forward to it to get me going in the morning. I am trying to be positive but as you all know and have been through, it is hard sometimes. Again thank you for all you positive support.

[Jasper]

Welcome to the forum.

Did the opthamologist say why the Restasis would not work for you? I would want to know the reason if it was me. Many of us are on Restasis and it does help us.

Before I went on Restasis I was using Systane, and no matter how much I put in, it did not help except for maybe a minute or 2 after putting it in. Then it was back to the sand in the eyes feeling and burning and pain. The Restasis worked wonders for me and now I use the Restasis twice a day (am and bedtime) and, if I need anything in between, then I use Systane in between, like if I am out on a windy day or on an airplane.

Plus, as you say, Systane is very expensive and those bottles do not last long.

Maybe you need a second opinion from a different opthamologist. Continued irritation of the cornea can cause ulcerations and scratches and can permaneb=ntly damage the cornea and impair your eyesight.

I second the suggestion of finding a Sjogren's support group near you. I go to one every o=month and find it very helpful and supportive.

[itzmejudy]

Thanks Jasper

I have looked for a support group near me but there aren't any. I even looked for Autoimmune support, RA support, Alopecia support but there are none. I don't understand why not. I was even trying to find a therapist that deals with chronic illnesses but they don't take Medicare, but I am still looking. I do think I need to go to another Opthamologist. I have appt. with Reumatologist tomorrow so I will request a second opinion referral from him. I appreciate all the suggestions and I am trying to be my own advocate. Thank you

Judy