Spondylitis Association of America
Posted By: Ashiegirl Feeling alone..... - 11/03/09 07:40 AM
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.
Posted By: nisey Re: Feeling alone..... - 11/03/09 12:35 PM

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!

Posted By: Spenser23 Re: Feeling alone..... - 11/03/09 01:52 PM
Have you looked on the SWIFT page of this site?


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.)
Posted By: pennie2001 Re: Feeling alone..... - 11/03/09 05:09 PM

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.
Posted By: Charlie Re: Feeling alone..... - 11/03/09 05:18 PM

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!

Posted By: Ashiegirl Re: Feeling alone..... - 11/03/09 05:45 PM
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.
Posted By: tiabird Re: Feeling alone..... - 11/03/09 07:34 PM
Could you have the flu?
Posted By: Ashiegirl Re: Feeling alone..... - 11/03/09 09:33 PM
could.... yes, but It would be odd that I get the flu every time I have a flair.....
Posted By: gramtam Re: Feeling alone..... - 11/03/09 09:47 PM
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
Posted By: Prana_Ferox Re: Feeling alone..... - 11/03/09 11:11 PM
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.
Posted By: MomtoRhi Re: Feeling alone..... - 11/03/09 11:22 PM
I have had flares where I run fevers and feel generally sick. Most of the time I run low grade fevers but have also had flares (at least what I now know were flares) where I ran pretty high fevers. Since I started having symptoms in childhood (I am now 35, diagnosed at 33), I have a long history of fevers and flu like illness in addition to joint inflammation. I have heard it is all connected.

Posted By: mariposa Re: Feeling alone..... - 11/04/09 03:07 AM
Ashiegirl -

It does sound like your medication is not working as well as it could.

I get a bad flare (feels like flu, flu skin, low-grade fever, just yucky all over) every 2-3 months. I think this is pretty often.

It is critical that you get enough rest (8-10 hours a day), eat right and don't overdo it.

I know this is hard for you at your age, but you can hang out with your friends as long as you give yourself "breaks". They want to go dancing? Go, just don't dance every dance. I used to go with my friends in college. I can't dance (at all), so I just sat out the dances, talked to other people sitting out and usually had a pretty good time.

If you need to leave early, just do it. You can say you have to get your beauty sleep.

It would be good if you can find even one friend to confide in. Sometimes you have to be really specific about what is going on with you for people to understand. This friend could be your "wingman" who can help fend off questions from others and who might even be willing to leave early with you sometimes so you don't feel like the odd person out.

As far as your school work goes, you may need to talk to your professors. Some will be jerks and some will be understanding. You may also need to take fewer hours at a time (12 instead of 15). I bet there is someone in student advising who could help you work this out.

Maybe you could start a facebook group for kids your age who have extraordinary challenges.

I'm sorry this is so hard for you and I hope you keep coming here to let us know how you are doing.
Posted By: Charlie Re: Feeling alone..... - 11/04/09 09:33 AM
LOL, I'm sorry, I forget the difference in age limits with drinking - here in the UK you can legally drink age 18. Its 21 in the USA, isn't it?

Good for you for not drinking though. Its definitely the smarter option when you have this illness.

As the others have said, I hope you find the best combo of medicines for you. You might also like to think of mebbes taking a cushion into long lectures with you. I guess everyone will see it, but I can't imagine sitting two hours or so like that. Ow!
Posted By: __Roblindy1__ Re: Feeling alone..... - 11/04/09 12:30 PM
Hello, my very first post anywhere.. but i understand what your saying.. I was in a wheel chair year 8 high school for a term because i couldn't walk or handle any pressure on my joints it was hard.. I'm now 37 but still remember those nights out on the town watching my friends dance and try to pull my around only to cause chronic pain i tried to hide it from everyone because i wanted to be 'normal'. I find it comes and goes to a point you can manage it as does the depression that seems to follow.. anytime you need to chat let me know i'd be happy to help if i can.
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