Hi Guys! New member here!
I just really want to vent right now.
As much as I can put up a facade in front of my friends, I am absolutely devastated inside.
2 years ago I felt extremely bad pain in my buttocks area. It would migrate to either the left or right side, but at times both sides would hurt. I originally attributed this to maybe a hard work out. When I let my mom know what was going on, she advised that I rest a bit and that the pain will subside. The pain never fully went away. At times the pain would get to the point where it would leave me unable to walk. About 70% of the time in a four month span left me hobbling around. Attempting to run would make my buttocks area flare up.
I ended up going to a doctor who diagnosed me with AS. He gave me the speech about how its not life threatening and that many people live normal lives but he also told me that there was a chance that my spine would fuse together, making me permanently hunched. I took some naproxen and the pain ended up going away. There were still times when the pain would come back, but for the most part, the 9/10 pain went down to maybe a 3/10.
My parents were pressed on finding treatments that would help me in the long haul. Neither I nor they liked the idea of me being reliant on pills the rest of my life. Not only that, the thought of taking strong prescription pills day in and day out left me very worried on the effects it’ll have in my insides. My mom came across this holistic treatment. We ended up paying a fortune every month for this treatment for a year. For the most part, the pain went away, just like when I took the naproxen. This could be the actual medicine or just a coincidence but who knows. After the year was up, I was doing fine. I didn’t have any bad episodes other than the light nagging pain. I knew that I still had AS but I was hoping that the worst of it past, than something occurred a few days ago.
Last week I started feeling a bit of pain in my right eyeball (mainly the area above my iris.) Every time I put pressure on the eyeball, I felt a pain that the left eye didn’t exhibit. One night, I rubbed it thinking that something got caught. After the initial pain of rubbing it, I honestly thought it felt better. I went right to sleep. The next morning, I woke up with my right eye extremely red and blood shot. As the day progressed, I began getting searing pain in the eye when I would be exposed to sunlight. It got to the point where I had to stay in the basement to get away from the light. Not only that but I would have to manually cover my eyes, which were already covered by sunglasses, with my hands so sun wouldn’t get in at all. Even when I closed my eyes, the sun penetrated my eye lids leaving me in pain. I made a appointment with an eye doctor the very next morning.
While driving to the doctors, I was hoping that it was pink eye, than it would be an infection that can be fixed with some antibiotics. The doctor asked me some regular questions and then looked at my eye. She then asked me the kicker “do you have any genetic disorders.” Once I told her that I was diagnosed with AS, she instantly told me that my eye was inflamed and that this was a symptom of AS. She informed me that there were some cases where the whites of the eye would slowly deteriorate, leaving my iris a bluish color. She prescribed two eye drops and 800mg ibuprofen, which as to be taken 3 times a day.
Right now, all this is new to me. I was diagnosed two years ago but having AS has been on the back of my mind. Other than the occasional butt spasms, I thought I would be able to cope but when she told me my eye was inflamed, that was when it truly hit me that I have AS. I started crying in the car because I felt so discouraged. Im 21 years old and I have a disease that less than one percent of the American population has. It left me discouraged because there’s a chance that I may end up hunched forever when I get older. Most importantly, I truly realized that there isn’t any cure. The fact that I’m starting to show other symptoms of AS leaves me scared that more symptoms will eventually crop up. Even right now, every time I look myself in the mirror and see the extremely red eye, it makes me wonder if my body is already breaking down.
I honestly don’t know what to do. I read some of the posts in the forum and it makes me so discouraged to know that I might be one of the people who will have to go to the hospital to get new drugs, new pills, treatment, etc. I feel as if the quality of my life just went down the drain. I don’t know, I just don’t feel happy right now.
Im thinking about taking yoga (anyone know the best type of yoga for AS?) but at the moment, I just feel like moping around. The doctor wanted me to take steroids but I chose ibuprofen. As stupid as it sounds, I just don’t like the idea of taking steroids but I feel as if eventually, as I get older, I’ll have to rely not only on steroids but also a multitude of drugs. I absolutely hate my life right now.

whilst you are still able bro get into an exercise prog and work hard and often at it,yoga,running,weights,swimming..whatever you can manage...oh and don't forget the AS exercises

if you can keep this up throughout your life you may be able to avoid kyphosis.work hard on your abs too.

do all this and you will find it will help you with your moods/frame of mind.

don't despair my friend not everyone with AS ends up with the classic text book image

take care
John

oh welcome to KICKAS

WELCOME, peppabref:

Thank You, for joining KickAS and sharing Your thoughts. Nearly all of us have felt this way at times, but our goal here is to help not only with the feeling of isolation, but especially with the potential to avoid disability and avoid kyphosis (hunchback) and avoid more permanent damage. Please have a look at the literature we have published here, and if You are amenable join us on the NSD and Diet Forum!

You can overcome AS, if You will.

HEALTH,
John

Hey there,

Best thing is you found Kickas. We have all gone through this process of the realization we are living with chronic disease.

Good news, there are a lot of options for you to check into. New medications, alternatives and even diet changes. I went the medication rout first, as that is what my father did. After 7 years I had to change because of some side effects... I found Kickas and tried the No Starch Diet and it has been my miracle.

There are some answers... you may never become hunched over if you find the treatment that works best for you... also as others pointed out and yourself, stretching and yoga are great for AS.

Take one day at a time, do what you can and learn about AS. We have a collective 100,000 years of living with AS at this site... so a wealth of knowledge to tap into. You can always come here to vent and seek support as well.

Best to you,

Tim

Welcome. You made the first step in dealing with this disease when you logged on here.

I am sorry you are having a hard time. I would like to encourage you that I started all of this when I was 14 and that has been over 45 years ago.

I understand the steroid reluctance. I lived along time with a love/hate relationship with them. I have taken so many that I can't take them any more but I would in a heartbeat to get some help. The secret to steroids is getting to the lowest dose that helps you and for the shortest amount of time.

Exercise all you can. I have always exercised even though now it is down to walking the dog or the dog walking me. I still try to move every day.

Come back often. I will be thinking of you.

Blessings.
Possi

hello and welcome!

sorry you are feeling so low right now. as others have said, been there, done that. and still when i flare, i'm back there. but things can get better with the right treatment.

some here take biologics , some use sulfasalazine, others take a lot of supplements, some find diet to work, some use LDN (low dose naltrexone), most find some form of exercise to be beneficial, some use steroids to get things under control.

for me, i've found a combination of things to help (see below my name).

as for steroids, if the doctor wants you on them long term, why not the biologics instead? or does the doctor just want to do it short term to get things under control?

some people are on nsaids for a long time without too many side effects, though one can have an ulcer without outward symptoms so one does need to be aware of that. but others have no problems. i get gastritis and edema right away with the ones that actually work; aleve worked the very best, but side effects were the problem. but there are other things out there, nsaids and prednisone are no longer your only two options like in the old days.

as for fusing. some fuse straight; that's possible if one is very conscious of one's posture. if you are interested in being proactive about that, there are things like the alexander technique that focus on posture. others don't really fuse. only time will tell.

i know its a lot to take in initially. especially so young. but as others have said, time has a way of marching on, and we do find ways to manage things. i started with the gastritis 20 years ago, the inflammatory arthritis 15 years ago. and it was much harder when i first got everything before i had any tools to manage things.

as for yoga, hatha yoga is pretty gentle. i might start there. i did yoga but had to stop as my enthesitis was so bad when i flared that i readily tore tendons and ligaments, sometimes just by gently stretching; but the doctor that dx'ed me said i had an extremely severe and unusual case of enthesitis. you don't sound like you have that problem. i still do yoga, but now on my own, knowing which poses i can do and which i must personally avoid. and when i flare, i know to take it easy. plus the LDN has helped immensely with my enthesitis. Kat swears by pilates. i've done both, but prefer the overall body emphasis of yoga, and the spiritual / meditative side to it as well. both i think can be beneficial.

PS take care of them eyes! i've been lucky not to have iritis. so do the drops like the eye doc prescribes. some others here who have had iritis find that the biologics keep that under control pretty well.

Oh, I am sending you so much positive energy, support and understanding right now. Iritis! I get it, too. It is always in my left eye. It only happens once in a while. But when I was first diagnosed with it, I was horrified, devastated...the testing that diagnosed my iritis lead to to my diagnosis of spondylitis and I was devastated, horrified even more.
Give yourself time to grieve. Come here if it helps but please do not read the posts from people who are really struggling. Just let those go. Just post and get support that you need.
Please just take it a day at a time. Let yourself heal from this shock and from having iritis. I never take oral steroids and my rheumatologist who specializes in AS at a fancy shmancy hospital, does not prescribe oral prednisone for her patients with AS. And she, by the way, loves that I do yoga! I've slacked off horribly this year but I'm getting back into it! Gentle yoga at first, listen to your body, do what feels good. Any heated pools in your neck of the woods?
uveitis.org if you need a list of iritis specialists or specific support, they have an online support group there as well.
sickopportunity.com if you are interested in the AS diet that helps so many individuals.
I'm over 20 years older than you. I work, I'm a mom, I have ups and downs, good days and bad days...but life is rich and rewarding and I'm glad to be me. Please have hope for the future!
All my best wishes to you...

Hello Peppabref,

Welcome to KA. I wish with all my heart that you had never needed to find us, but now that you've been diagnosed, I'm glad you made it here. You'll find an amazing amount of information and support here, which will hopefully make it easier for you to deal with your AS.

After reading your post, I want to cover one thing in particular regarding your eye. You mention your eye doctor told you your eye was inflamed, which was common with AS. She is right, but I want to make sure she told you exactly what you had, and, if she did, that you fully understand how severe it can be. She did tell you that the condition in your eye is called either iritis or uveitis, right? Iritis is the term we use more commonly here, so I'll go with that. Iritis is actually a totally separate disease, but it is very, very common in people who have AS. The good news is that it is very treatable; the bad news is that, left untreated, it can cause you to permanently lose sight in the affected eye.

You say she gave you two eye drops. I assume one is a steroid drop--likely something called pred forte or a related drug--and the other is probably a drop that causes your eye to dilate (perhaps a drug called homatrapine). Did she explain to you what the two different drops were, what they were for, and how important it was for you to follow the dosing instructions VERY closely? I ask only because in your original description of your appointment, you don't mention iritis at all, just that she told you your eye was inflamed. It sounds like you had a pretty severe bout of iritis, which might have been made worse because you waited several days before you sought treatment. Believe me, I understand that completely. When I was 18, I had my first bout of iritis, and because I had NO idea what it was (like you, I thought it might just be pink eye), I waited almost two weeks before I saw an eye doctor. As a result, I almost lost my eye right then and there. Luckily, the doc was able to save my eye and eradicate the iritis, but only after giving me a steroid shot directly into the eye, which was not a pleasant experience.

As I mentioned, the good news about iritis is that, despite the fact that it is a serious disease, it is easily treatable. As long as you use those steroid drops exactly as directed, you should be able to wipe it out. I hope your doctor has you using the steroid drop very frequently to start out--once an hour would not be unusual--and then tapering off the drug very slowly from that initial dose. For example, my usual schedule with the drops is to use them every hour for a week, every two hours for a week, every four hours for a week, and so on until I stop them completely. It is VERY important that you do taper off the steroid drops--do not just stop them cold turkey.

I assume that you have a follow-up appointment with your eye doctor no more than a couple weeks after your first appointment. If she didn't ask you to make such an appointment, you should be pro-active and set one up. Because iritis can cause blindness, it is important to monitor it closely and ensure the drops she gave you are working. If the drops aren't working fast enough, there is another very easy treatment she can give you that will kick up the steroid treatment a notch, which is to give you a shot of steroids. Luckily, this shot is not directly into the eye like it was for me back in the day. I'm not sure exactly how the shot works, but it inserts a slow-release steroid dose into the surface of the eye (it's up in the top corner of the eye, so it doesn't appear in your field of vision at all). For the next two to three months, you can actually see a small white blob in the corner of your eye--that's the steroid, and you'll see it shrink as time passes and it releases into the eye. My doctor uses to use a steroid called kenalog, but there is a new steroid that is designed specifically for use in the eye. I am drawing a complete blank on the name of it now, but I'll look it up from one of my past posts.

I know this is probably a lot to digest about the iritis at a time when you're still trying to wrap your head around your AS diagnosis, but I thought it was important for you to know exactly what was going on in your eye. Now, perhaps your eye doctor DID cover most of this at your appointment and you just didn't go into detail when you described what happened there, but it certainly seemed like she might have not have made it clear exactly what you were up against. Just in case that was true, I wanted to give you more information on this very common companion to AS. In fact, if you search the Kick AS forums for the word "iritis", you'll be amazed at how many hits you get and how much information is available here at KA. I would venture a guess that, out of all the secondary conditions that seem to come with a diagnosis of AS, the most common one that affects the most KA members is iritis.

If all I've done is manage to confuse or scare you with this post, I apologize because that definitely isn't what I was aiming for. If you are more confused about your eye condition now than you were before you read my post, please send me a private message here at KA and I'll do my best to answer any questions you might have.

In the meantime, as you can see from the initial responses you received to this post, you have definitely come to the right place to learn as much as you can about treating your AS. Since you are very reluctant to use the pharmaceutical options available right now, I think you'll be very interested in the no-starch diet (NSD) and other natural treatments for AS that are discussed here at KA. At the same time, I urge you to keep an open mind about the meds used to treat AS these days. Many KA members have had great success with the new class of meds called biologics (also known as anti-TNF drugs--TNF stands for tumor necrosis factor). The biologics include such drugs as enbrel, remicade, humira, and more, and they have worked wonders for a lot of people, including me. I took enbrel for roughly five years, during which time I experienced the best pain relief I'd ever had since I was first diagnosed. In addition, the enbrel actually slowed down my symptoms, which is one of the most important features of the biologics. Eventually, my body did become used to the enbrel and it gradually stopped working. At that time, I switched over to remicade, and I've been on that ever since. It actually works much better than the enbrel did, which I didn't think was possible. Remicade has been an absolute godsend, and I've been on it for over three years now.

In addition to the biologics, others have mentioned some of the other prescription options available right now, including sulfasalazine, low-dose naproxen, and NSAIDs. Actually, I would urge you to avoid the NSAIDs at absolutely all costs, using them only as a last resort if you have to. And, if you do have to use them, I would try to only use celebrex. I say this because it has been definitively shown that NSAIDs are incredibly dangerous to use long-term because they almost always cause stomach ulcers, some of which can even cause fatal internal bleeding. Celebrex at least is a new class of NSAIDs that are specifically designed to NOT attack the stomach, and it is much safer than the older NSAIDs like indocin. In fact, I take celebrex now, but only as a last-resort back-up for those times I am having a flare or for the last week of my remicade cycle (I receive remicade via IV infusion every 8 weeks; sometimes, the last week of that cycle can be kind of rough, and the celebrex helps).

I know this is a lot to digest, but you can take your time and do your research here at KA to try to decide which options are best for you. As you're already discovering here, the best resource of all here at KA are the members themselves. You'll learn that the people here at KA are the kindest, most helpful people on the planet, and any time you need help, they will be here for you at all times.

Again, I'm glad you found us, and welcome to KA. I hope that you start feeling better.

Brad

Hi there, first off, welcome to KA.

Secondly, your life isn't over. There is no reason you cannot live, for the most part, the life you dream of living. Especially if you start yoga or pilates, be disciplined about stretching, walking, swimming, weight training, dancing, anything to keep you moving. Exercise is a key component in the treatment plan of anyone living with AS, or it should be anyway. Do as much as you can. Always stretch, always, and base weight training on how you feel on the day. Don't overdo, it'll take time to figure out what your body can do on any given day. Your spine might still fuse, but your chances of staving this off, and if you do fuse, fusing upright (without the curvature) are better if you exercise.

Check out the low starch diet. It does not work for everyone, but enough people have felt better on it that it's worth giving a good try.

Learn relaxation, meditation and stress relieving techniques to help you get through the bad periods, as stress is a massive trigger for anyone living with an inflammatory arthritis. Check out your local Arthritis Foundation chapter, as they'll have helpful info, courses, support and exercise suggestions. You might find the Arthritis Self-Help Program helpful. It's a six week program designed to be taught by people living with arthritis, to people living with arthritis and/or their families, to help you find ways to regain control of your life.

Keep coming here to vent. As supportive as your folks sound, they don't live with this and sometimes you really just need to talk to people who understand fully. And your folks sound great, from what you've said.

As for your eyes, this does go hand-in-hand with AS, and several other inflammatory diseases. I call it arthritis of the eye, because it is an inflammation. Now that you've had it once, you'll recognize the early signs of it should it recur. Get into an ophthalmologist ASAP if you do, for proper diagnosis and treatment. I had my first bout at 18 and have had about 4 others since. However, I haven't had one since starting on the biologic medications. These meds do seem to work a treat for people with iritis.

Anyway, I think that's enough for a first post.

Hugs,