Just got diagnosed with Lupus and Sjögren’s syndrome

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ChicagoDude
New Member


Date Joined Oct 2014
Total Posts : 2
   Posted 10/17/2014 3:22 PM (GMT -6)   
I'm a 23-year old male who was just recently diagnosed with this crap.

I had symptoms start when I was 17, but they were mild and occurred randomly. So doctors thought it was all in my head and were never able to diagnose anything. The frustrating thing was that I had multiple positive ANA tests and there is a history of different autoimmune diseases in my family.

It wasn't until May of 2013 that I initially diagnosed with Rheumatoid Arthritis. I was waking up everyday with swollen and painful fingers. My rheumatoid factor was high and my ANA was positive. However, the swelling and pain never got worse, but a bunch of other symptoms started showing up.

*Dry eyes, to the point where my corneas get scratched by my eye-lids when I open my eyes.
*Rash on my face.
*Shortness of breath, which has bothered me on and off for the last 3 years.
*Pain in my legs and it feels like they're bruised when there are no visible bruises.
*Pain in swelling in other joints
*Brain fog/having more diffuclty concentrating and even speaking a coherent sentence at times
*I get pains in my chest when I try working out

I feel like I was diagnosed 3-4 years ago, I would have been considered a "mild" case. But now with all this other crap and how quickly it started, I feel like I'm on the path of being considered one of the more serious cases.... and now I fear I won't live long and/or live a miserable life.

I don't even know what my question is. I don't even know if I have any questions. I've already done so much reading on Lupus and nothing is clear, which makes it even more frustrating. It seems like ever question is answered with, "well, no two cases are alike! Just follow your doctor's advice!" Awesome. I guess my alternative it to take drugs that are going to cause terrible side effects.


I'm seriously frustrated. Screw this.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 10/17/2014 6:32 PM (GMT -6)   
Hi ChicagoDude. I agree, this crap sucks. It especially sucks for a young man at 23 to have to deal with this crap. There isn't alot of clear info out there and the "what ifs" of this and other autoimmune diseases can make it particularly overwhelming and frustrating more so when first diagnosed.

I think your case would still be considered mild, usually when there is organ involvement (kidneys for example) it would be considered more serious. Mild is still pretty craptastic tho, don't get me wrong.

Here's the good news, you have a diagnosis and now you can be proactive. You can make healthy choices that will help slow disease progression. You may not have to take medicines all the time with terrible side effects. You will have good days. Life will not be all misery all the time.

Here are the most important things I would suggest you do to take control and keep your bad days at a minimum;

Adequate rest and a good night's sleep
Eat healthy, if you want to eat junk do it one day a week rather than something junky every day.
Stress less, don't sweat the small stuff. It will make you sick.
Exercise, build muscle, maintain flexibility but don't go all Arnie and overexert yourself
Stay positive and learn to laugh about things more. Laughter is good medicine.
Get your omega 3's every day and see what your vitamin D level is. Those are two biggies.

My motto is that I have an autoimmune disease because the only thing strong enough to kick my *** is me. I accept (acquiesce ) that I have this challenge (albeit reluctantly) but refuse to be defeated by it.

That is all the pep talk I can manage for today. If you want to know more about healthy foods and supplements to help keep symptoms quieter just lemme know :) and keep your rheumy in the loop on any lifestyle choices (diet, exercise etc) . Pay attention to what triggers symptoms and what helps them. Self awareness is key.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/17/2014 7:37 PM (GMT -6)   
This stuff does stink in my opinion too.
I have other nasty hitchhikers too, but this one tops them all.
I'm considered mild to moderate in my symptoms.

I just won my SSDI hearing yesterday. That's the only positive thing I'm getting out of this so far. I can now start focusing on getting my body healthy as it can be.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 10/17/2014 8:02 PM (GMT -6)   
Yup, Acquiesce & Couchtater are right --

Your case is still mild as you have no organ involvement. My magic list is this:

1) Deep restorative sleep. If you are on prednisone this might be difficult, ask for something to help you sleep. Take naps when you need to.
2) Eat fairly well. Mainly non-fatty proteins, fruits, vegetables.
3) Exercise. Nothing strenuous, but keep moving. It hurts more if you stop moving. Just walking is fine.
4) A good multivitamin, plus make sure your Drs check your Vit B and Vit D levels.

What is your treatment plan? What meds, etc?

Eye lubricant will help a lot -- NOT medicated, preservative-free is what you need.

Let us know!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

ChicagoDude
New Member


Date Joined Oct 2014
Total Posts : 2
   Posted 10/17/2014 10:15 PM (GMT -6)   
Thanks for the responses everyone!

A question I have is what symptoms indicate a major organ is involved? I ask because I have had a lot of symptoms related to my heart and lungs. I had an EP study done a couple of years ago because I was having a lot of palpitations and a cardiologist ordered a 24 hour monitor where he found NSVT (non-sustained ventricular tachycardia). The EP study came back okay. I was having chest pains while running, and had a couple of stress echos done, where they saw ischemia on the ECG, but the echo looked "mostly normal." And as I've mentioned, I have had shortness of breath on and off for a couple of years as well. On top of that, my GP found protein in my urine several times over the course of the last 6 years.

I had a cardiopulmonary stress test that I did TERRIBLE on. The doctor said my results were that of an old person with heart failure. Which he thought was odd given that I was only 21 and very thin. One doctor thought I had mitochondrial disease, which shares many symptoms of lupus actually.

The first doctor that diagnosed me with RA wanted to start me on Plaquenil. But she said that my RA was really mild... so I tried natural treatments. I started taking fish oil, but that aggravated my GERD, so I switched to flaxseed oil instead. I cut out all dairy since I'm lactose intolerant and even cut out gluten, because why the hell not. I started eating healthy, and working out. I was even taking ginger supplements because I heard that it naturally reduced inflammation. And honestly, the pain and swelling in my joints pretty much went away.

I thought I was in the clear. Maybe if I stick with this, I can keep the disease at bay long enough so I can keep the toxic medicine away! Then all the other symptoms started popping up and it became clear that it was something other than RA.

Right now, I don't have a plan. I'm afraid to take medication, and I'm afraid of not taking it. I have an appointment in 2 weeks, so I guess we'll find out then.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 10/18/2014 4:57 PM (GMT -6)   
Plaquenil is relatively mild and slows disease progression - nothing to be afraid of. And takes 2-3 months to build up in your system, so if you already have it prescribed I'd suggest you go ahead and start taking it - no reason to wait.

Rarely, our eyes have a reaction, so everyone should have a baseline eye exam with a follow up every year. Plaquenil and Your Eyes rolleyes
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Kimstph
Regular Member


Date Joined Sep 2014
Total Posts : 55
   Posted 10/18/2014 9:34 PM (GMT -6)   
Joy, how long did it take you to win your SSDI case? Was it a horrible ordeal?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/19/2014 12:18 AM (GMT -6)   
I applied in October of 2012 via website. They sent me 16 pages of more forms. I was turned down April 2013. Got a lawyer right away. Refiled asking for a hearing. Had my hearing the other day.

I did see the SSDI doctor for an exam and had two tests at a hospital. The SSDI doctor said I couldn't have lupus and fibro at the same time. RA didn't rear it's ugly head until 5 months after the visit.

The waiting is just too long. Otherwise it wasn't too bad.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Sarah2014
Regular Member


Date Joined Oct 2014
Total Posts : 27
   Posted 10/19/2014 6:39 AM (GMT -6)   
I was nervous to take plaquenil at first too...but once I realized that it helps to prevent the organ involvement.. It was a no brainier for me.Also a little googling about how a lupus patient diagnosed today will most likely live a normal life span... Not the case thirty years ago. It became a much easier decision. I feel so much better on it.

I am sorry you have to deal with this so young. But, great that you are empowering yourself with learning all about it. I follow a rheumatologist on Facebook that wrote the book the lupus encyclopedia...his Facebook page has been so helpful to me... He gives tips a few times a week. Has helped me learn so much. You might want to check it out. Just google the lupus encyclopedia and Facebook.

All the best to you. Take care!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/19/2014 11:20 AM (GMT -6)   
Make sure your monitored by a good eye doctor while on the plaquenil, becasue this medication has a side effect that does effect the eyes so a good eye doctor needs to take pictures and monitor you and make sure nothing happens to your eye's while on this medication.
Go and get an eye appointment first thing in the morning and get checked, plus a good eye doctor can give you some drops to help with your eye dryness...
I like ACT for dry mouth better than biotene...Make sure your dentists know about the sjogrens and dry mouth...
Don't give up hope, even with Sjogren's (which I have) and lupus you can still have a life, it's not a huge game changer, with a good team of doctors you can do good, keep hope and live in the moment always.

Many well wishes to you and keep us posted, yes it sucks to have an illness, but you can deal with this and your doctor's can help...Keep hope!
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Brismom
New Member


Date Joined Oct 2014
Total Posts : 8
   Posted 10/26/2014 10:05 PM (GMT -6)   
chicagodude: The only thing I hate more than being recently diagnosed with Lupus is hearing about a 23 y/o who has been recently diagnosed with Lupus! I think I have probably had it for many years and had the fortune (or misfortune) OF not being diagnosed until now (just turned 58). The thing that makes me mad is I could have organ involvement now because the docs took so stinkin long to diagnose me! So please...take your Plaquenil. I am now taking it for all that's worth. If you take it now and keep yourself mild to moderate they may have a complete cure in  a few years. Can you maybe find a support group or a church in your area? It's just not normal for someone your age to be going through a chronic disease and I hope you have good family support. I have chronic hepatitis c too, so Im not really sure which disease makes me feel worse but I feel like death warmed over! How about online support? I don't know, i'm just thinking there are a lot of your young ladies your age dealing with this disease and it would be nice if you had someone to talk to. Anyway, I will be praying for you honey~but seriously consider taking the Plaquenil.

gjg426
New Member


Date Joined Nov 2014
Total Posts : 3
   Posted 11/5/2014 8:25 PM (GMT -6)   
I have a theory about Alzheimer's and this disease too. It is based upon a first hand experience.
Admittedly, it is a long shot.

http://ggenereux2014.wordpress.com/2014/10/27/alzheimers/
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