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#273892 - 04/06/16 01:25 PM I cant believe this is my life.....
GlutenPutin Offline
Registered Visitor

Registered: 04/05/16
Posts: 7
Loc: Hollywood, California
Growing up I was always nauseous after I ate or drank certain juices. When I went through puberty I was the only one of my friends who had painful cramps, and later would deal with ovarian cyst. FOR YEARS! I would get horribly painful abdominal cramping every couple of weeks. It felt like my intestines were shredding as I digested food. My menstrual cycle got so bad and painful I couldn't walk at times.
At 26 I was diagnosed with Endometriosis and a couple of months later I was diagnosed with Crohns disease. I had to have a hysterectomy, which was fine because I was asking for one since my teens.
Everything started to finally get right, fixed and known.

The first time I left my apartment after my hysterectomy, I grabbed the banister and it popped off the railing. I hit my head neck and back. Since then I've had to deal with horrible back pain and sciatica, numbness, eyeball pain and much more. I'd been to many doctors who couldn't figure it out. My rheumatologist noticed my Crohn's medication and said he thought my pains were from ankylosing spondylitis.... First it's hard as heck to say, second I didn't know what it was, so I googled, then cried.

I'm 28 now, and walk with a cane. More than likely I have AS because I fit to many symptoms and plus the Crohn's. It's been a crazy life so far, and now I have to deal with this!!! I totally don't want to have arthritis or anything form of to deal with. I've been looking through these AS sites and very few people have the pain go away. Heaven only knows what this will be like later in life. I am still "undiagnosed" until my next appointment because my MRIs and Xrays have to be reviewed again because AS didn't come up in the gene test. I wish I could be positive but after my life, and fall, I got depressed. My doctor just prescribed me Cymbalta for the pain, and after reading a post, it may not be so good in the long run.

I feel like I was born to be in pain, and live that way. Seriously, I have to deal with arthritis or some spin off of it! At 28! Ugh...

I hope this makes someone out there feel better about their pain and life because, I have yet met someone to go toe to toe with about symptoms at my age. When I go to the rheumatologist or gastroenterologist I'm ALWAYS the youngest person there, and of course get looks. Where are the young people at, seriously! Anyways, sorry for the rant, I guess there's no point but to learn how to live in pain, again! And of course, eventually stop bitc*ing and get over it.
Thank you for your time!
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~*~Gluten_Putin~*~

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#273895 - 04/06/16 01:51 PM Re: I cant believe this is my life..... [Re: GlutenPutin]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1607
Loc: MS
Quote:
I've been looking through these AS sites and very few people have the pain go away.


That's actually not true, and there's a reason it appears that way: most of the people who come here for information get better and never come back. They are too busy getting on with life. They come to a forum like this for research and answers, they find what they need, and they move on.

The ones that linger are the "outliers", the ones who don't get better. But they are not representative of the AS population as a whole.

As far as the Cymbalta, don't give up on it too quickly without talking things over with your doctor. Diehardhusky, the member talking about her withdrawal issues, is one who has had issues with medications before. She is allergic to most of the biologics, she is allergic to latex, she has some other medical issues that give her major difficulties. She has a really rough time and I feel bad for her. But her experiences are not always typical of people with AS in general.

On the other side of the coin is Banana in that same thread, who had absolutely no reaction to stopping Cymbalta other than the fact that her pain returned.

It sounds like you have had to deal with a lot in your young life, and it's a shame that it has taken so long to start getting answers. The fact that you have multiple issues going on no doubt has made it that much more difficult.

But it sounds like answers are beginning to come. Keep us posted on what your doctors say and the results of your tests.

_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#273898 - 04/06/16 02:49 PM Re: I cant believe this is my life..... [Re: GlutenPutin]
GlutenPutin Offline
Registered Visitor

Registered: 04/05/16
Posts: 7
Loc: Hollywood, California
I have not had any problems with Cymbalta, although I have not taken it that long. I worry about meds because I have Crohns, and definitely don't want to agitate anything else.

I will definitely be posting positivity if/when the pain goes away! Everyone should, it shows people hope! I obviously have much more reading and research to do, and I will definitely post updates!
Thank you for the post!
_________________________
~*~Gluten_Putin~*~

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#274439 - 05/09/16 02:56 PM Re: I cant believe this is my life..... [Re: GlutenPutin]
CB in CA Offline
Registered Visitor

Registered: 02/20/03
Posts: 2840
Loc: Huntington Beach, CA
I was 37 when diagnosed and my brother was 30. We both were lucky enough to find an excellent Doctor who was able to diagnose and manage our AS right away. (I have moderate AS and my brother is mild) After 10 years of a cocktail of medications, I went into "remission" and have been stable for the past 6 years. Although in remission, I continue to take Sulfasalazine daily to keep it at bay. I do consider myself one of the lucky ones.I was absolutely miserable the first 10 years and felt defeated on many days but my three little children kept me trudging through the thick mud of life. AND - I didn't want my children to have memories of their youth as me being the "sick mommy" so I put up a brave front. Sometimes, I think life is what you make of it. I was just so happy my diagnosis wasn't terminal cancer. Yeah...I am that glass half full type of person!

Keep searching for the right Doctor if you don't feel like your getting the answers, medications or right diagnosis.

Oh- I don't comes to the forums as much as I use to because as my pain and flares subsided, I was able to go back to work. And many times when do I pop in, I don't post, just read up on everyone. My children are now young adults and I am trying to enjoy life with my husband while I feel well enough. I am warned by my Doctor every 3 months, to enjoy this time because remission doesn't mean forever in many cases.

Keep being your own best advocate and know that some people do getter feel better even if not cured.

There is hope!
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#274446 - 05/10/16 12:53 AM Re: I cant believe this is my life..... [Re: GlutenPutin]
EricHampton Offline
Registered Visitor

Registered: 10/13/11
Posts: 50
Hi GlutenPutin your name made me smile. Are you gluten free?! I am 28 with AS but I started getting symptoms at 17 and back pain came back permenant at 18 where an ankle sprain I got from falling running away from a university campus safety officer drunk (cause I was walking to late night dining hall with open container) never healed and turned into enthesisitis in every large joint and moved up my spine to my neck/mid back. Gene test is not so important these days, i'm negative. Having crohn's pretty much makes it a done deal prob get an enteropathic spondyloarthropathy diagnosis. Yea that's a fun word. Sounds like your rheumy is on top of it but don't let them not give you treatment because you have a negative sacral MRI. Mine has been negative for 11 years and doesn't mean you don't have spondylitis. This disease most often effects young people actually many take a long time to get diagnosed because they don't have the right doctor. I am hoping as much as having crohns sucks that it will at least make getting a spondylitis diagnosis easy. I wonder if eyeball pain is injury related or uritis/uveaitis but not to mess around with when you get it see eye doc and mention AS. What meds do you take if you don't mind? a biologic for Crohns would also help AS. Cymbalta didn't do anything for me. Being sick young sucks but there are lots of options you will feel better then you do now.

Eric




Edited by EricHampton (05/10/16 12:55 AM)

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#274467 - 05/10/16 09:04 PM Re: I cant believe this is my life..... [Re: GlutenPutin]
obrienk84 Offline
Registered Visitor

Registered: 01/26/16
Posts: 47
Hey there, I also started experiencing AS symptoms in my late 20's, and also due to an acute injury, where I lifted an unexpectedly heavy object from above, and it came down on me. Since then, I've been suffering, but recently started Humira + SSV, which has helped considerably. Get on a biologic ASAP--one will likely help you
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Early 30's male, HLA Negative, AS diagnosed Feb. 2016, Humira.

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