I'm 17 and I REALLY need help | Arthritis Information

 

Hey all!
My name is Melissa... I will be 18 in a few days.
I need advice badly, I'm kind of scared. I can't talk to my mom or dad right now because my dad is having back surgery soon probably and they are really stressed out.
Ok.
I have a strong family background of Lupus, Raynauds, auto-immune diseases.
I have had Raynauds for a couple years.
Went to rheumatologist.. got blood work done. Only thing wrong was my ANA- it was 1:320.
All my other blood work was fine, RA factor was fine, Lupus tests were fine.

So I have kind of a chronic Raynauds thing going...literally 24 hours a day, 7 days a week.
My hands are ice cold.. all the time, discolored most of the time.

And now I feel like I have some sort of Arthritis in my fingers (at least im paranoid)
-the joints in my fingers have a deep bone ache almost every day.. but it only lasts maybe a couple minutes, then maybe will come back later. but its a deep ache.
lately my wrist has been hurting.
-when i bend my fingers, all of the pop... or crack. i just bend them normally and they crack
-the raynauds thing
-and i have pretty bad TMJ.. jaw pain, all the time.. it cracks and is very painful
-my neck grinds..my shoulder grinds all the time..my shoulders pop on left side when i rotate

I think im over-thinking everything.
But I just want to get advice before I stress my mom out more.

Thanks!!!
Melissa

I was just about your age when I was diagnosed.  I remember, my RD appt. was the first one that I went to without my parents.  I agree with Buckeye, hon. All your symptoms may amount to something or maybe nothing at all. But if something IS going on, the earlier you know the better. I'm a mom and I can tell you that I'd never want my daughter to keep this from me, no matter what else was going on.
Good luck to all of you. I'm with the rest, tell mom and try to get this sorted sooner rather than later.

Raynard's was my first symptom for over six months before the onset of RA.
Sounds to me that something is going on.

All the best.
and another vote for listen to Buckeye and share your experiences with Mom...... Keep us posted how you do.......I wish you the best. Everyone who already posted gave you the best advice. Thank you so much for all your advice!
I guess I'm reluctant to tell because I am still able to manage fine, the pain isn't so often and severe that it is too much of a bother, you know what I mean?

Another question... like when I get deep pain in my finger joints it only lasts a couple minutes.. then it could be gone for an hour or for a day. Does that even happen with arthritis? What is your pain like?

Thanks!
Pain is different for each of us. For me it's more achey than stabbing. But it's generally constant. However, depending on the joints, if I cease using them the pain might lessen. I can be traveling along just fine and out of the blue I can get this deep aching pain in my fingers or shoulder, any joint really.
I'm lucky in that it can also go as quick as it arrived, usually no more than an hour.
deep bone aches..yes... but they don't go away quickly.... but slowly will dissipate for me.

but can come on quickly..... a wrong move...or just a move of any kind can cause a major pain flare up.

I don't have constant pain though...and we can't tell if there is any destruction, so please... you're so young..have a rheumatologist take a look...

Hi, I agree with telling your Mum, definitely.  As for your question, yes I had bone pain, sometimes quick and sometimes not so fast, but in hindsight this was years before I was officially diagnosed with RA and I realise now, these were my first symptoms, so please get checked out, regards Janie.  PS  Keep a journal re your pain etc, they are invaluable down the line when you are asked how did it start, which joints, which meds have you tried etc etc.  Good luck. thanks everyone!

Welcome!

I agree with everyone else that you need to get your mom involved and into diagnosis/treatment. Best of luck to you!

 

I get shooting pains regularly. They are very sharp and don't always last long. They will come and go all over my body. My big toe, then in a finger, my shin bone.....

To the top Bumping up to the topOh okay thank WanttobeRAfree, kind of sounds like me sometimes.
I have started a calendar symptom journal so I'll be able to explain my worries to my mom easier.
Does stomach problems and nausea have a connection?

-Thanks,
melis
I would definitely have someone look at your jaw now, to figure out what you can be doing to prevent future problems...I had jaw problems at your age, and they said "oh it's just TMJ," but I have erosions now and it's obvious it is/was RA.  At minimum you can know to avoid chewing gum, etc.  Thanks Katie... Im just finally realizing that!!!
My dentist was just like ohh yeahh TMJ. And they have tried a few things like sanding my teeth for my bite, but not working.

i never really realized it could be a part of something else
bumpLisa,

 

Did you tell your mom? 

 

If you were my daughter and didn't tell me immediately I'd be really upset with you. I'm sure your mom is good on multi-tasking so she'll be able to handle it.

 

Just because you're able to manage.......not good. The point is that some forms of arthritis degenerate tissue and once the damage is done, it's done. I don't mean to scare you, but the sooner you get a solid diagnosis and get treatment started, the better off you will be. You're much too young to "manage it."

 

Now promise you'll let your mom know today. Please?

Sam, thanks for your support. I will be honest I haven't told her yet but my dad had his shot today and I am currently keeping a journal of symptoms and I promise I will tell her the end of next week. I promise! Hi Lisa...wow. Your concern for your mom is so sweet, I love that!  But take it from a mom...we don't want to be kept in the dark.  Your mom will hate it if she finds you've been dealing with this without her.  She obviously raised a strong, caring young woman, I bet she has some of the same stuff in her.  She can handle it.  :)Ughhhhhhhhhhhhh

So after reading your message Sam i thought about it and pretty much immediately told my mom. And after you hear what happened I think you'll realize EXACTLY why I didn't want to tell her in the first place. I feel so so so embarrassed.

So I told her there was something I was worried about. I told her I was worried I had some kind of arthritis in my hands. And she goes, why? So i told her that I was having some deep bone aches that come and go. And she asks why else I think so. SO I tell her how I was paranoid cuz I keep thinking about my TMJ too.

And her response is that it is most likely from my Raynauds. And she said that the TMJ was from me grinding my teeth and that a mouth guard can fix that.

And then she says that my blood work would have been bad and I would have had a positive RA factor. And at that point I was so so so so so embarrassed and I felt like a complete idiot and I was about to cry so I just ended the conversation. I feel so so stupid. I feel like I am overreacting about everything in my body now.

So now I'm done. I feel so stupid
Hi Melissa.  Sweetie, you have nothing, n-o-t-h-i-n-g to feel embarrassed about!  A positive RA factor is not always the case!  I am not trying to convince you that you have RA, just saying its possible.  Would you mom come here and ask questions?  You may both benefit from this and she may see the importance of completely ruling out RA as a diagnosis. 

I wish you all the best, and I hope you find the answers you seek to put your mind at ease.
Again, don't feel embarrassed.  Sometimes "silly" questions have serious answers and, as we all know here, it is important to listen to your instincts and your body!

Oh no you don't. You don't get to feel embarrassed. I'm going to be blunt and suggest that your mother should be embarrassed about brushing her child's symptoms off when it's apparent her child is hurting. 

 

I have been sero-negative and never in 16 years have I ever had an abnormal blood test for any of the arthritis tests. Not once. And my blood is tested every 13 weeks, if not more frequently.

 

Even people with Lupus often have normal test results.

 

The normal titer of antinuclear antibody is 1:40; higher titers of this autoantibody can indicate that a person is affected by an autoimmune diseases. Yours was much higher........which translates to something going on.

Gather together information and ask a trusted adult family friend or family member to read it and then talk to your mom. You need someone to champion you.

 

You indicated a family history of autoimmune diseases. I'm wondering if your mother feels that if she denies it, it won't be so  with her daughter. You need someone to talk with her.

Sam12342010-02-19 22:10:30I hate to hear that your conversation turned out that way. 

Even if you mom doesn't feel that you need to worry, will she still schedule an appt? 

 

As others have said, blood work isn't everything.  And there are forms of JIA/JRA where seronegative is the norm.  Also...don't just let the TMJ issue go.  If you read some of my back posts, you will see that I am the poster child for TMJ issues.  I have a consult for a joint replacement on Monday.  TMJ is almost always(95%+) muscular-clenching/grinding and so on...but-if the joint is involved, it can be debilitating over time.  Over time is the key phrase there...catch it before it gets out of control.  Once again...there are forms of JRA where TMJ invovlement is a hallmark.

 

I don't want you to have any form of a disease.  I just look at you and see myself at the same age with the same medical situation.  I was diagnosed due to the quick thinking of an ER dr. I played sports all through highschool and most of college(until the RA just got out of control).  Went to the ER thinking I had torn something in my HUGE knee.  He noted many other swollen joints and the referals began from there. 

 

Do you and your mom normally have a pretty good relationship?  Well, as good as it can be when you are a teenager:)  Everybody has had a time when a symptom of something has caused them concern.  I'm sure you mom has had times when she has worried about something.  My mom and I always had the best discussions in the car cause we were trapped together. 

 

Please keep us posted...

She didn't mean to make me feel embarrased :( she just thinks that I don't have it which is fine. Well this summer we already had all my bloodwork read by my aunt who has lupus and a rheumatologist and then we did more specific blood work for lupus and scleroderma and so this is why I feel stupid to have told my mom. At the time when I saw my rheumatologist for the first time.. My fingers just hurt a little and popped when I bent them and he said nothing was wrong. And I didn't even mention my tmj.

But really, what I'm gunna do now honestly is just get the paranoia out and then it sounds like some people on here were 'hit by a freight train' with symptoms and if that happens she will see. And if the symptoms continue then I will try again. My fingers really don't hurt bad at all and if they do it's only for a few seconds with mild pain.

So thanks for the support everyone it meant a lot!Oh I just saw your post ... Sorry.
Yeah we have a pretty good relationship. I don't think she will schedeule an appt tho. Hm that's the thing tho... I've never had anything that bad such as swelling or something that really affects me which is why I feel I'm paranoid.

I bet it was hard to hear the news when you were so involved with sports !
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