Newly diagnosed, 27 year old F, scared

[Mara2012]

Hello everyone,

My doctor thinks I have Sjogrens.  I have had positive bloodwork indicating autoimmune disease for many years now, as well as symptoms mirroring fibromyalgia, lupus, etc.  Doc diagnosed me with Fibro and sjogrens, despite not having much eye and mouth dryness.

My main compalint which brought me to the doc (and all the docs before her) is body ache, exhaustion, joint paint.  I am an avid athlete-a chick hockey player in a men's league, have tons of energy, and am heading to law school next fall.

My body has taken a drastic turn for the worse and the last few months have been heck.  I have had to quite my job as a preschool teacher due to not being able to function.  I cant provide quality care for children, so I went to part time.  Now I cant work at all, let alone shower and take care of myself at home.

Been on Cymbalta for two months now.  No noticeable difference in pain minimization, but have noticed a better evenness of moods and emotional regulation.

Doc started me on Prednisone nearly one month ago and I still cant walk past seven pm due to my knees being in excruciating pain.  My doc is making me get my eyes checked and a Sjogrens screen done on Thursday so she can start me on Plaquenil.  I am VERY VERY VERY SCARED to begin this medication.  This is my last resort.  I have tried everything for the past three years to feel better and have not had any results other than downward spiraling.

Does anyone have any advice in regards to Plaquenil?  I have no health insurance and am seeing a doctor via a medical clinic for low income people.  I want other opinions but am unable to garner the resources to do so.  Though I feel my doctor is highly trained and competent, etc, in this area, I am unsure in my full beliefs of this Sjogrens diagnosis.  Perhaps this is because I do not have any dry eyes and mouth symptoms, or because I am still in denial.

My main concern with my current situation is a horribly burning pain in my pinky toe for the last two months now.  I didnt mention it to doc because I thought it was from an old hockey injury.  My legs have been going numb on occasion (my right let went numb when I was cooking and moving about my kitchen).  My pinky toe gets excruciatingly painful and then stops suddenly and doesn't hurt at all.  I am worried my blood vessels are inflammed?  I have also been experiencing major chest pain, which almost brought me to the ER this weekend, but again, no insurance. 

I am having a hard time distinguishing my symptoms from what is real and what is side effects from medicine (prednison and cymbalta)?

Thank you for listening.  Perhaps someone has advice on how to apply for jobs despite this condition?  I need to find a new job but am terribly scared I wouldnt be able to perform to anyone's expectations when I cant hardly walk around for a full shift.

Thanks, peace and thoughts to you all

[Babs659]

Please don't be scared of Plaquenil.  The eye involvement is VERY rare, and most folks only get some GI upset ( I had none).  It's really a weak drug at this dosage compared to prednisone, methotrexate, enbril and some others.

You have enough to be scared of with all those horrible symptoms and pain.

[Joe S.]

Welcome Mara2012, to the Sjogren's forum.

First, fear and anxiety are normal reactions but they are not your friends. "Feeling Good" by David Burns has exercises to help you deal with them. When Job hunting I would not mention Sjogren's or any other Auto Immune (AI) disease. The side effect of most AI diseases is that you look Marvelous.

On to alternatives. A 6 to 8 oz glass of carrot juice every day will provide your body with what it needs to produce endorphins. Endorphins are a natural pain killer and about 1000 times more potent than morphine. Reflexology will allow you to send those endorphins where you need them most. You may want to stop playing hockey and instead spend a day at the spa.

Acetyl L Carnitine repairs mitochondria DNA damage. Alpha or R-lipoic acid removes the debris from the repair. Together they help to remove brain fog. Be thankful if you have not receive that AI "gift" yet.

If you have RA you may want to consider a glass Black Cherry Juice every day.

Diet can play a big part in your management of AI diseases. There are a number of good recommendations on this forum.

Wear your Polar fleece mumps scarf to bed to reduce ear aches, and gland infections.

You may find listening to each tone for 3-5 minutes helpful.
Dry mouth: http://www.chakraforce.com/Tonations.html#26.
Dry Eye: http://www.chakraforce.com/Tonations.html#326.
Insomnia: http://www.chakraforce.com/Tonations.html#7.
Gland infection: http://www.chakraforce.com/Tonations.html#228.

Management is the key to good health.

[mshistory]

Hi Mara and welcome! Why are you scared to begin Plaquenil? When I was diagnosed earlier this year, I had the same initial reaction but once it set in, I was scared NOT to treat this and to try to get the symptoms and hopefully the progression under control. At first, I thought I didn't have any of the dryness symptoms, but sometimes, we live with things for so long that we don't realize they're not normal (like my fatigue!). My optometrist just confirmed my eyes are dry (but not too bad) and I have to keep water with me all the time - I get so thirsty but I'm still producing saliva. I can no longer eat dry bread. 

Anyway, SjS has caused joint pain, fatigue, hair loss, dry cough, and who knows what else - it may be responsible for some of my recent weight loss. Next month, I'm having a CT scan and a battery of pulmonary tests to check on my lungs since it may be affecting my lungs as well. Even if you have Lupus, the first line treatment is Plaquenil, and I think most people tolerate it without any problems (only side effect I had was bad scalp itching that lasted for about a week one month in). Good luck and welcome to the forum!

[Jellyb]

Dont be scared Mara,
You have a bunch of us here with the same thing. And you will find lots of answers here.

I am on a really low dose of plaquenil, only 100mg every other day. Not a scary dose at all. And it has helped. My pain has lessened, I am not dosing off at the grocery store or standing in line at the bank.

Get your eyes checked before you start the medication, and every six months. That will give you peace of mind.

[arina83]

Hi Mara.

I'm in a similar position, except I cannot find a doctor to start me on medication. I'm also 27 and working my way through college. My health has meant that I have had to cut back to 2 courses per semester. My main issues are dry eyes and mouth, difficult breathing, joint pain, weakness and fatigue. I've had to go on disability, which sucks, but I am hopeful that some day I'll be able to work.

One of my projects right now, in addition to getting ready for my next exam, is to find myself some good doctors.

[Tim]

Hi Mara!  I am also a hockey player, well not right now because of the pain but I still skate twice a week coaching 8 and under mites. I to was scared to start Plaquenil because of the eye thing but with all the support and wisdom from this site I started it three weeks ago. From what I hear it is extremely rare to have eye issues at these doses, so that's why I started it. Been doing OK just having some sleep issues and stomach problems from the medicine. Doctor said these will go away eventually and should see improvement with the pain in about three months.

Tim