Early 20's, New to RA. Advice needed!

Hey everyone,

I've been looking at other people's postings for a while now, and finally mustered up the courage to post my own. I'm 23 and was recently diagnosed with Sjogren's and RA. I started seeing doctors at about 20 years old, and I finally have direction on what my treatment plans will be. I'm of course on Plaquenil, Enbrel, Mobic, etc. I was just wondering if there were any other youngins out there dealing with this. At times I feel very lonely, as many of my friends or even family can't really understand the pain I deal with on a daily basis. It's very scary to think I have many years of this ahead of me. If anyone has any advice, it would be greatly appreciated. Thanks!

Thanks for responding Chartreux and sayyadina! Thank you for welcoming me. I'm so excited I FINALLY have an outlet to talk to others, and gather some ideas on how to make this disease hurt less. I'm definitely going to check out your suggestions as far as eye drops go, etc. I have not tried methotrexate yet. He started me out on heavy doses of prednisone and then I switched completely to just Plaquenil a year ago and have only been on Enbrel for 6 weeks. Sayyadina, I'm sorry to hear you've been in so much pain, it's "comforting" to hear I am not alone. I wish I had these suggestions whilst in college, studying for long hours was terrible on my back, hips, and neck! Budgeting my energy is definitely something I'm trying to learn to do. It's hard to keep up with the fast pace life throws at you, and especially with looking for a job on top of it. Water is key in controlling Sjogrens and losing my voice easily. I know some people look at me weird when I'm talking and all of a sudden I have a frog in my throat.

Also, I'm not sure if any of you have been experiencing or experienced severe hip pain. I have had hip bursitis and it hasn't gone away. I have constant popping and shooting pains up and down my back from it. I'm wondering if this is connected to RA. My doctor is in the process of trying to figure this out, but I was just wondering if anyone knew if this was related.

Again, thank you so much for taking to the time respond! I am much appreciative.

Stay well.

I was in my early 20's when I was diagnosed about 20 years ago.
The worst I ever felt was the year before and the year after diagnosis. With treatment I feel so much better-hopefully the same will be true for you and as you get your meds straight you won't be so tired and hurt so much.
The most important thing is a doctor who understands what you are going through and will listen to you.

I am thankful that my family cannot understand what I am going through.

Hi- Sorry you have the condtion. Its so tuff to deal with diseases that are out of our controll. I have had RA for almost 30 years noe. Im still mobile but want to encourage you to never give up. Always look for different treatment options. Something eventually will work. Here's a link to some helpful alternative options: Its called the Unexplainable store for reason of the obvious, check it out.   a href="http://31bc75xirqwetfth-59mr4t9f7.hop.clickbank.net/" target="_top">Click Here!</a>  

Welcome, Melissa!

I'm sorry you had to join our "family" at such a young age. 

I'm fifty-three now, but have had RA since I was in my mid-twenties, so I know how hard it is to be young and "different".  I don't have much to add to what everyone else has said, but I just wanted to let you know I understand.

Keep posting! 

Wow, just wow! I haven't had time to log on here in a while but may I just say you all brought tears to my eyes. It's such a warm and comforting feeling to know not only do many other of all ages, races, and genders are feeling the same I do, but that complete strangers care for one another. What a great way for people to come together in times of need and support. Thank you all for your kind words and I hope those who responded that are dealing with at a young age as well, realize you have a person to relate to now. Those who have been dealing with this for their whole lives, kudos to you and I hope to gain wisdom and knowledge from you all through this support group! I feel so much better already and I must say I can't wait to start posting and keeping the dialogue going between everyone here!

That's great news, Melissa--I'm glad you're responding to treatment!  I'm on Enbrel and methotrexate, and that's worked for me for about twelve years. 

I have become concerned  regarding some of the potential side effects of these "heavy-duty" treatments, and am exploring some other options, but won't post about it any more until I actually try it for myself.  (If you're interested, look for the thread with the heading "Low-Dose Naltrexone".)

Yes, please keep posting, as no one else can truly understand unless they've "been there", and we all have!  I look forward to getting to know you better! 

You mentioned that you hadn't logged in for awhile...are you aware that you can "subscribe" to your thread (or any other thread) by checking the box below that says "notify me of reply postings by e-mail"?  Just wanted to mention that!

Kim 

Hi TKJ3,

I look forward to "meeting" your daughter...I can't imagine how much better I would have felt dealing with this disease if I would have had a place like this to come and ask questions and share my feelings.  Unfortunately, the onset of my RA was well before the "electronic age"! 

Best of luck to your daughter!

Hi Daffydoodles,

I know what you mean, and you're so right!

If you don't mind me asking, how old are you now?  (I'm 53.)

I think that the reason these forums are so successful and helpful is that because we can communicate with people who do "feel our pain".  I think back to my aunt and grandfather, who also had RA, and how alone and different they must have felt. 

We here are lucky, because we can correspond with dozens of people who understand! 

Daffydoodles,

I've only been on discussion boards for the last few years, and before that, I was "on my own" as you were.  Yes, more than one diagnosis is tough, but I still know that many others are worse off.

You're right that there's a difference between sympathy and empathy, and I think that's a big lesson having RA has taught me.  This pain has made me very understanding toward others with any type of physical problem.

Speaking of pain, I sure hear you when you say that RA brought you to your knees in pain...it can just be horrific.  I can remember my pain before the biologics were on the market, and it was just brutal...sometimes it hurt just lying in bed breathing.  I remember my husband didn't want me to start on the Enbrel my rheumy recommended because of all of the potentially serious side effects, but I just couldn't hack it any more.  (And like you, I have a fairly high pain tolerance.) 

What do you take for your RA?  I'm on Enbrel and methotrexate, plus a small dose of prednisone.  I'd love to get off of all of this toxic stuff, and I'm exploring another option, but we'll see how it goes.

Well, it's late, so I'd better turn in--I've enjoyed chatting with you--keep posting!! 

 

Hey daffydoodles,

Did you have any problem going off of the methotrexate?  The two times I've tried to go off of it resulted in excruciating pain.  Did you just stop taking it cold turkey, or wean yourself off?  I want to get off of it, too, and was interested to know if there's a "trick" to weaning off of it.

Good luck with the Mediterranean diet helping! 

Hi daffydoodles,

If you would, keep me posted on how it goes longer term without the methotrexate.  I think it does take awhile to get out of your system, but I would think at the three-week point, you'd be able to at least begin to tell how you were going to feel without it.

Within the next few weeks, I'm going to try a new (and far less toxic) medication for my RA, and I have to be off of both Enbrel and methotrexate to try it.  I'm not looking forward to that part! 

Thanks for keeping in touch!