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

I'm so sorry to hear of your struggles Seb - I also have no advice to add but just wanted to send my support.

Seb, sweetie, you've been given some very good advice. Take a look at it and decide what you can do. Psychology and psychiatry are definitely worth looking at. If you need anti-depressants to help, then take them. There are two things at work here: your AS, and the depression caused by living with it. You're struggling to get your AS under control, but you can do something about the depression. Please seek some help.

Anti-depressants can help a great deal with situational depression - that's what it tends to be with us. They can also help with pain levels. The AS brings on the pain and fatigue, stress and worry feed the pain and fatigue, which feeds the AS. The stress and worry are probably also affecting your sleep patterns, and all of it put together on top of living with longterm pain cause the depression. It's called the Cycle of Pain. If you can break this cycle at any point, it eases every other part of it. Therapy and anti-depressants will help with the depression, which will ease the stress, which will stop feeding the AS. Getting the pain dealt with will ease the depression as well as your stress levels and sleep patterns which will ease the fatigue which will .... You get the idea. It all rolls on top of each other. You might have to break the cycle 35,000 times a day, but once you learn how to do it, it becomes easier.

You need to get the depression treated. That is something you can do something about while you are trying to get the AS effectively treated. You would be surprised how much will ease once the depression is being treated.

I went to theatre school. I didn't know I had AS and I attributed all my aches and pains to dance classes, long hours, usual pulled muscles, sleeping on floors when I had nowhere to live. I couldn't have done my programme in any other way because of the way theatre school courses are designed. Luckily, theatre school courses (mine anyway) had a large component that dealt with relaxation exercises and massage. That was my saving grace, that and the constant dance and movement classes, and the breathing exercises in my voice and singing training.

You, however, are in the enviable position of determining the speed of your degree; how many courses you will take in any given semester. You don't have to do what others your age are doing. Who says you do? Determine the course of your life, Seb, in the way that you want and need to determine it. You have that power. You're an adult with challenges. Be creative about how you live your life, find innovative ways through that work for you, because you are the only person that matters when it comes to determining the course of your life.

But first, get into treatment for depression and don't stop looking until you find a doctor/therapist you trust and can work with.

Love and warm hugs,

(((((BIG HUGS Seb )))))

Sherri

Hey Seb,
Don't worry god it trying to test our patience, but there must be something good for us on the other side.

I was also having tremendous pain last year and my NSAID's are like not giving me enough relief from pain. Then i switched to Ayurveda treatment and it really helped me to control my pain and my regular activities.

My cousin brother is also HLA B27 +ve from last 10 yrs and suffering from fusion in neck region he recently undergone Ayurveda treatment in India and he is feeling lot more better now.

The treatment is simple you just need to do is , oil massage your body regularly followed by steam bath or sauna so that your skin pores will get opened up to get more oil into that which will reach till your joints.

Basically why we are getting pain is because our joints are getting closer because of inflammation and they pain when friction happens so if we can add some lubricant to it the pain would be less isn't it.

Plz try this. this helped me really. It may take few days but it is harmless and good for everything.

Hello Seb,

Hope you are doing better today. Hang in there, one day at a time.

Best

Tim

I decided to take a day or two away from my computer so I'm just reading this now.

I'm honestly overwhelmed with these messages. The amount of support that you've offered me here and in the past has been incredible. There are very few people who I talk to about these issues in person and it makes me feel so much better to know that there are people out there who understand and can relate. It might sound a bit cheesy, but I don't think you realize how much reading these comments helps me, and the impact that they have on me when I feel at my lowest points.

It's quite late, but I'd like to reply to some of these messages in the morning.

Thanks again,

Seb

reply as you can, we're just glad that this thread has helped you

hope today is a better day

Hi!

I am sorry to hear that you are experiencing such intense symptoms at such an early age. I consider myself very lucky in the sense that my university years were not greatly affected by AS. I was diagnosed in November 2011, half a year from graduation. The summer of 2011 was when symptoms really started, mostly with incredible fatigue and intense pain in the SI joints. I graduated in the spring of 2012.

Ever since I was diagnosed, life has been an ongoing struggle. I am 26 now, so not that much older than you. I have learned to cope a lot, but as a young person it can be difficult to stop burdening yourself with unnecessary expectations and comparing yourself to others. I still do that a lot. Once I would have energy to do school, training, job and weekend parties and not blink. Now I get sleepy at work and am lucky if I can keep my eyes open when I get home from the office in the evening. So I compare myself to my past self as well as others and get anxious. I tend to run bad scenarios through my head like losing my income, home, girlfriend etc. It's there all the time and yet as the years have progressed from diagnosis to fatigue to back pain and the first signs of stiffness, I have also felt something akin to "coming into my own" or slowly becoming my true self. It has forced me to learn a lot about myself. The challenges I have overcome despite my condition and the help I have experienced have affirmed my faith in God and the goodness of other people.

In trying to overcome the disease, I have benefited more from self-observation, critical thinking and personal research than the help of doctors. Things that have helped me include:

*) Skipping breakfast - I have tried the no starch diet and noticed little difference in my own case. What instead works for me is intermittent fasting. If I couple this with calorie restriction (meaning normal portions for lunch and dinner instead of compensating the lack of breakfast with a doubly huge meal later in the day), it gives a marked reduction of morning back pain and increase of daily energy levels. This might not be for everyone though, so you just have to figure out what works for you. Nevertheless, I am completely convinced by my own experiences that it is possible to control the inflammation process with changes in diet.
*) Breathing exercises to increase body oxygen - Fatigue appears to be related to the amount of oxygen available for metabolism. I tended to and still tend to crash heavily after meals. One thing to try is to increase body oxygen. It can be done simply by performing aerobic exercise (runners and cyclists have bodies highly efficient in oxygen uptake), but this can be very difficult if one is completely exhausted. The problem can be solved by practicing breathing exercises at home. I use something called the "Frolov breathing device", a kind of a plastic tube where you put water in and then breathe through the water. The resistance of the water trains the body to breathe correctly. Usually right after an exercise session, I feel energized and ready to take on any task. Although doing the breathing is kind of tedious, exercise sessions usually last around 30 minutes a day. You can find more info on correct breathing at - www.normalbreathing.com
*) Training - both strength training and aerobic training are really important. This is also the hardest part for me. Because fatigue is such a big part of life, recovery periods tend to be especially long. I can only suggest taking things real slow. It is especially good to have a motivating coach or physical therapist, but even as little as 10 minutes of exercise a day can make a big difference. The most important thing is to keep at it. I have had to restart my exercise regime countless times.
*) Simplification - this is a philosophy that I try to carry forward in life. I try to keep things as simple as possible. This means that I always try to develop my own simplest method of doing things. I try to develop in my mind the capacity to approach each and every task with the question: "What is the simplest, most stress-free way I can accomplish this?". An example would be training regimes - there may be those who say that you have to do this or that many reps of this or that exercise to achieve results. What I found out quickly was that no one has the right answers for you. You just have to start trying things and in due time you'll instinctively develop methods that are most suited to your preferences and capabilities. In this way your abilities develop naturally and you don't have to worry about meeting someone else's preset standards. In any task in any field you have to start somewhere, of course - usually with a book on method - but whatever you are taught, always keep an eye out for possibilities to modify and most of all, simplify.

And I hope you feel better soon

Best

Artur

((Seb)) I am so sorry things are so tough for you. You have been given a lot to absorb so I am not going to try to add anything else. I just wanted to give you a couple of big hugs.

I have been in those places like everyone else that seemed like there was no way out. We have made it out of each one of them with the help of God.

Seb, like John, we would never hesitate to help one of our children. I hope you won't feel bad accepting a hand up from your family. If one of our adult children (much older than you) was ill and needed home, I would be standing out on the porch waiting on them to get here. Probably most of us have needed help at one time or another.

I hope you will try the NSD and I also hope you will see a counselor. I do from time to time just to have someone to talk to without putting it on my family. They wouldn't mind but I prefer this. Also there are some really good meds to help with the depression. I would go for both; counseling and meds.

Hugs, SEB. You will get through this. I started this mess when I was a child with RA and added Lupus and AS in my 20's/low 30's and here I am many decades later.

Take care of yourself and don't be too hard on yourself. Our 22 year old grand daughter is still in school after having to take a break with illness and then working a lot and carrying a lighter load. You don't have to be in a hurry. Just keep putting one foot in front of the other; one class at a time. You will get there.

Joyce

Hi seb, I hope you're feeling a bit better today. I can relate to a lot of what you're saying. My career is not what I thought it was going to be at this point in my life, and sometimes that's really hard to cope with. I am lucky that I did find a part time job that I enjoy, but I still really want to work full time, but I just can't with my health and sometimes even part time is a struggle. It's hard because I feel like I should be farther ahead, but this is the hand I've been dealt, so I just try to be grateful for what I can do and what I do have, which is a lot.

Like others have said, get the depression treated. I took meds for about 6 months and they helped a lot. I also went to therapy to just vent. The meds can reteach your brain to be happy by reestablishing neural pathways that make you happy, but which your brain isn't currently using enough. This effect can last even after you've stopped the meds.

And like kat said, you don't need to do what others are doing. Just do you. You're enough just how you are. There's no wrong way to live your life. You make the rules, and you set the timeline. I know it's hard not to compare yourself to others, especially in your 20s, but you must learn how to just walk your own path. if others had your challenges, they'd be having the same struggles you are. So just don't be so hard on yourself.

It's going to get better! There are still many biologics you can try, and I'm convinced there will be a cure in your lifetime.