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Feeling alone.....
#160747 11/03/09 07:40 AM
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Is there anyone on here in their late teens or early twenties? Itís hard to relate to most of the people on here because there is such a large age gap. I am really struggling with my AS a lot right now. I have had to take a break from college and I am moving from Iowa to Florida in hopes that the warmer weather will help me. Humira stopped working my friends donít understand why I canít go out dancing or doing a lot of other things that they do. I really donít want to let this take over my life, but it is. If anyone just has advice or anything that may help let me know. No matter how old you are, Iím just sick of feeling like no one understands, and feeling rather alone.


~Ashley~
Diagnosed
Ankylosing Spondylitis Oct 07 at age 18
Fibromyalgia Jan 09 age 19
Re: Feeling alone.....
Ashiegirl #160759 11/03/09 12:35 PM
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Ashiegirl,

I am not your age. I am 39. I just want you to know that you are not alone! I began experiencing symptoms at your age but went undiagnosed until I was 37. Don't give up on finding a treatment that works. I take Enbrel and it seems to help some. Talk to your doc and tell them how you are feeling. Don't give up!

Blessings,
Nisey


It is what it is!
Re: Feeling alone.....
nisey #160764 11/03/09 01:52 PM
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Have you looked on the SWIFT page of this site?

http://teens.spondylitis.org/


You are not alone. You just haven't met people with AS in your age group. Keep looking, they are to be found.

If you don't mind some of us older folks, come join us on Saturdays for our Spondyville online chats. We laugh a lot.



Spenser23 (Sadly, 23 is not my age, just my 'lucky' number.)


Re: Feeling alone.....
Spenser23 #160782 11/03/09 05:09 PM
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Ashiegirl....

I know the feeling! I was diagnosed when I was in my teens, college was really exhausting at times. Now I'm in my late twenties and still get really frustrated when I can't "do" what everyone else does- i.e. go out, stay up late, work out on a regular basis.

if the humira has stopped, talk to your doc, there's a ton of good meds out there! I just started Remicade and on my 4th dose and feeling almost " normal". Don't give up!! This forum is awesome for help/advice and pick me ups.


"We are what we repeatedly do. Excellence therefore is not an act, but a habit."-Aristotle.

29 y/o, first diagnosis of AS at age 22. Also have OA in both knees, Raynaud's phenomenon, taking Remicade infusions and weekly methotrexate injections, as well as voltaren, protonix and folic acid.
Re: Feeling alone.....
pennie2001 #160783 11/03/09 05:18 PM
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Heya

Don't worry, we don't care that you are younger than us! Welcome aboard.

I am glad in some ways that my spondy started when I was older. It was very mild when I was in my early 20's... I put it down to straining my back doing sports. Although I was never sure how it was that exercise actually improved it.

I would have hated to be your age with full blown spondy. I was a complete party animal at Uni. LOL

All I can tell you is how I go about socialising these days. It is a bit lacking in spontanaeity, but you don't have to diarise.... you are likely to know that Everyone goes out on Fridays, Thursday or whatever. Just try to make sure you have an easy day beforehand. Save up your energy. You probably know how much you can drink if you are taking your meds at the same time. These days, my tolerance is really low and I get headaches easily... so its only a couple of small glasses of wine for me. The equation SPONDY + HANGOVER = HELL anyway, so I'll bet you don't overdo it often. Just try and enjoy yourself the best you can -- and write back and tell us about it!

Anyhow, don't feel out of place here, you do belong!






37, Female, Psoriatic Spondylitis
www.charliefoulkes.com
Re: Feeling alone.....
Charlie #160786 11/03/09 05:45 PM
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Oh I found out fast that drinking + spondy = BAADDDDD. I don't drink.

I'm struggling right now. I have been flaring for over a week, the worst one I have ever had. In 2 1/2 hours I have to make it to class, and I have no idea how Iím going to make it.

Has anyone else ever had a flair that made them physically ill? I don't feel like I'm "sick" but I have a low grade fever, I'm nauseous, pain in my SI area, spine, neck and rib cage with some difficulty breathing. I feel pretty stinking miserable.

Sorry I know Iím whining.


~Ashley~
Diagnosed
Ankylosing Spondylitis Oct 07 at age 18
Fibromyalgia Jan 09 age 19
Re: Feeling alone.....
Ashiegirl #160790 11/03/09 07:34 PM
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Could you have the flu?


Tia
Re: Feeling alone.....
tiabird #160793 11/03/09 09:33 PM
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could.... yes, but It would be odd that I get the flu every time I have a flair.....


~Ashley~
Diagnosed
Ankylosing Spondylitis Oct 07 at age 18
Fibromyalgia Jan 09 age 19
Re: Feeling alone.....
Ashiegirl #160795 11/03/09 09:47 PM
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Hi Ashley:
I am so sorry you have to go through this at such a young age. I wasn't diagnosed at your age but looking back did have flare ups like you are talking about. I did get flu like and I think it is because after being in pain for so many days, not eating or drinking properly one gets nauseaus. I stll get that way when my neck and shoulders flare up because i will get a headache and then the nauseausness. This sight is a great sight for understanding, sympathy and just listening.
Welcome and I hope you will find some releif soon.
God Bless


Tammy McNaught
Re: Feeling alone.....
gramtam #160800 11/03/09 11:11 PM
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I'm 18 with very aggressive AS. I sometimes get fevers when my sacroilitis is very bad, and fever is actually a symptom of sacroilitis. Feel free to private message me if you want.

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