Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group In the fight for my life.

Hi everyone. It's been a while since I've visited these forums. I really do hope you are all doing okay!

It took me a long time to decide to write this message. I feel as though I have definitely matured as a person since I visited here in the past. I rarely ever complain about my problems now, but at this stage I feel like I need any kind of help/advice I can get. I don't really have anyone to talk to about these problems in my life and whenever I have needed support, people from Kickas have always been there to help me.

I wish I had some positive news to report, but unfortunately I'm still in a bad state. Within the past year I have been on Humira and Enbrel with no result. Literally nothing. No positive effects or negative side effects even. It seems like they were both about as effective as injecting water into my body.

I'm 21 years old now. I'm watching all of my friends succeed while I still haven't finished my university degree and I am only taking one paper a semester. I SERIOUSLY struggle to wake up before 11am every morning and as soon as I get home at about 2pm in the afternoon the pain and fatigue are both so intense that I end up crashing and waking up between 6-8pm every night. It's just horrible and really is no way to live and experience life. I can't rely on my parents to put a roof over my head and food on my table forever. I must find a solution, otherwise I simply won't be able to make it through this life. The thought of trying to work a 40 hour week in the next couple of years is terrifying when I can't even sit in a chair for more than 15 minutes without wanting to scream from the pain.

Simply put, I genuinely feel like I'm fighting for my life right now. This disease is just crippling me and the depression that is accompanying it is almost more dangerous. I am really unsure of what I'm trying to get out of this post but at this stage I just don't know where else to turn...

Thanks,

Seb

sorry its so bad, right now, still.

a lot of people had to go through lots of biologics before they found one, so please don't give up hope, there are many more to try, and new ones being developed every year.

as for school, slow and steady, it will take you longer, but you will get it done, one course at a time, as best you can, others here have done that.

and if you can't work a 40 hour a week job, there is disability, etc

we never know what the future has in store for us, so then, hope for a better future is what we have.

if you need a psychologist or psychiatrist to deal with the depression, etc, don't feel afraid, ashamed, etc to reach out. even meds to deal with that if need be

i know how you feel, i was like that from 35 through almost 50. was lucky it didn't affect my university studies, but just as i was starting to teach, it hit me, having a faculty position under those conditions was a real challenge. some years were bearable, others almost weren't. then i found a biologic and things are much better. i used to be jealous of all those getting dx'ed and treated and often asked "why not me." not saying you are saying that, but if you are, i can say "your time will come". hang in there, easier said then done, I know.

Sorry just a quick note.
Life can be tough sometimes especially when you are young.
I couldn´t pass by without mentioning 1 thing.
One should try to fight depression. I only learnt after I started to feel better that depression actually fuels the disease because it diminishes your immune system.
This could cause you more problems than you need.
My trick was learning to get happy no matter what the situation. Liking it rather than lumping it.
Hard to explain but important to do.

I went to a psychologist without medicine and started to feel better just listening to myself and himself.
If I were you, do what you have to do to feel happy. You might be lucky and find your AS symptoms subside.

I was in a similar situation to you with the fatigue etc. it can be incredible.

Having said that now I have had 7 1/2 years completely pain free. I have my fingers crossed that I can keep it up

Welcome back, Seb:

Sorry that You have been through all this; in the early years AS is at its worst.

I dealt with AS while finishing school, and it was not at all pretty as I had already left home and had to work at the same time. Best thing I ever did was to join a health club and 'work out' my frustrations.

But the answers have been here all along. I never want the biologic drugs to fail; these are very good and basically agents, when they work. It appears they do not work for You, and that is really frustrating. Remicade infusion might be an option to try.

The real fight, however, is with Yourself.

If I had a son Your age, I would not hesitate helping financially, but would encourage (knowing what I know about AS) him to undertake a fast and get on the right antibiotics. It would take some time--up to a year--but AS activity can be reduced or eliminated through the combination of diet and antibiotics but the protocol must be tailored to the individual.

You can change Your own life, You can choose when to overcome this disease and finally show it who's boss; nobody can do that for You. If I could, I would (I need to fast anyway!).

I know what You are going through, and hope that You can get it right--AS was the stumbling block for me that I had to first overcome before moving forward. This disease always got in my way at the wrong time; I HAD to take control over it.

HEALTH,
John

The average day living with ankylosing spondylitis makes the worst days of living without it look easy. Yet, here you are - stronger than most, proven by the fact that you're still kicking around after years with AS.

Ankylosing spondylitis is an insidious thing. Destroying your motivation, turning things that take mere minutes for anyone else into hour long tasks for you. But this is no weakness.

For every simple task that you do, you're putting out at least twice the effort of everyone around you. You're gritting your teeth and pushing yourself through it. The fact that you've made it this far is a clear indicator of your amazing inner strength.

Methotrexate and Humira never seemed to do much more than make me sick on top of the soreness. I put off college for five years just because of my fear that I couldn't walk across campus. I'd seen all my friends succeed, expanding their boundaries while I struggled just to pull myself out of bed every morning. The depression was eating at me.

The only thing that has got me through it all was the realization that no one else was going to do anything for me. No one else was going to test different AS drugs on my behalf, no one else was going to finish college for me. The same went for the depression - no one else was going to put an end to it but me.

I started breaking down these larger, more painful tasks into smaller accomplishments. I began to find that I could handle them much easier this way. As I saw more success this way, the same went for everything else in my life:

Depressed? I forced myself to see a counselor once a week (no matter how much I hated it).

In pain? I started focusing on the things I COULD do to handle my arthritis flare ups (no matter how little it felt like it helped).

Difficult to concentrate in class? I put in the extra work to visit professors during office hours and recorded their lectures (no matter how unnatural it felt for me).

When I accomplished smaller goals, I became more confident in my abilities. Growling against the pain for twenty minutes trying to get out of bed suddenly became less a defeat and more a battle. A battle that I could win, piece by piece.

And you can do the same thing, Seb. You can probably do it better than me.

It's important to stay motivated, especially when you're feeling defeated. I save a list of quotes and links that I go to when I'm stuck in that rut of depression and self-pity. I read self-help books and motivational blogs, I do five minutes of stretching instead of my usual thirty. I do anything I can to keep that accomplished feeling.

Start breaking down every difficult task into smaller goals, and start meeting those goals no matter what it takes. When the depression begins to settle in, find one of those small goals and go after it, find motivation and strive to maintain it.

Talk to your doctor about more treatment options besides Humira and Enbrel. Schedule classes around the hours you're functional during the day and go to them. Schedule homework around the hours you're functional at night and do it. Start doing some research into alternatives to a 40 hour work week that would lock you up in a cubicle somewhere.

An average person would have given up by now, but clearly that person isn't you. You're still here, Seb. Ankylosing spondylitis is a disease that you have, but that doesn't mean that it has you.

Hello Seb,

Been there as well when I wondered how I would ever make it 5 10 or 20 years into the future. But here I am still posting in much better days.

Chronic disease is not easy, need to take one day at a time. I would guess your body fighting AS all the time is really wearing you down causing the fatigue. However.. even when my AS was fine under meds... early afternoons after a big carb lunch always got me very fatigued. Can you also tie some of the fatigue to what you are eating?

Hang in there and do what you can each day. Hopefully there is someone close to you as well that you can talk to.. if not, come back here and talk some more.

Best,

Tim

Sorry to hear you are still struggling. Just a couple of short messages from me: first, it took me 27 years to get a degree (from first starting one to finally graduating). You don't have to follow the same path as your friends - I learned that rather late, but there are definitely lots more ways to get to the same end point as them but in your own way and your own time and picking up huge amounts of life experience on the way. The last thing is that a good clinical psychologist can be incredibly helpful - I almost gave up on psychological therapy, having not got on well with the first couple I saw, then I found someone who really did help me get on top of all the psychological stuff I was going through - and the positive effect of that is still with me 30 years later. Find a therapist, and if they don't seem to help, find another, and another until you do get one who can see what you need.

Sorry you are having such a rough time. Please don' t feel there are no other options to the meds you have tried. There are so many other alternatives to try. Other diet options like the Autoimmune Paleo, food allergy testing to bring down inflammation, manual physical therapy, accupuncture, antibiotic therapy as well as the need to rule out other conditions that may be adding to your symptoms.

Have you had testing for lyme disease? As someone who has both lyme and AS there are times I'm really not sure which is the major player.

I would try to focus on now and not worry about the future right now. Instead of thinking about what you cannot do focus on what you can.

Depression can wreck havoc on your body. I agree that a good Psychologist may be able to help.

Pain is hard to deal with but sometimes the best medicine is to keep going. I had horrible bilateral bursitis last night. Today I slapped a lidoderm patch on each side and headed off to work. Sitting home thinking about wht I can't do would be letting the disease win.

Seb- sorry to hear you are struggling. I think you are doing the right thing posting your feelings here. This support group got me through my roughest times and hope I can help you get through your rough time as well.

I definitely wouldn't give up experimenting with different meds until you are satisfied with how you feel. If took me over 10 years to feel like "I can do this". I would definitely look into adding LDN because LDN has helped me a great deal with pain and fatigue.
I tried three biologics before finding one that is helping a great deal.

I think it is important to not look at what others can do because that will definitely bring you down. You have to make your goals realistic, based on how you feel. During times when I was at my worst, my goal was to get through the day.

Hope you start to feel better real soon.

Shari

Can't add anything that hasn't been said, so here are some gentle hugs. ((((((seb))))))