Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Mental Health and AS

As a relative child on KickAS and with my less then a year diagnosis, the most difficult piece of all of this madness is my mental health. I have experienced incredible moral support from some AS veterans and simply by reading the different topic notes. That being said, my mind is screwed up by the day to day changes in my body. One day it's my shoulders, pelvis, then the middle of my spine and neck the next day and then the elbows and muscle spasms the next. Not trying to complain, but I see a Kafkaesque change brewing and the hypochondriatic tendencies are a wee bit too much to deal with. Now, what should I do? I'am trying to stay positive at all times, but that is not exactly in my makeup. Any advice? Any thoughts would be greatly appreciated?

I totally understand where you are coming from. Some things that help me:

1- a book called "Making Sense of Suffering" by Wayne Brickey
after reading this, (and I go back to it often) I truly feel like "I CAN DO THIS," and most importantly that God still loves me.

2- sometimes I take an anti-depressant called Wellbutrin, I KNOW ssri's can be scary. This is one you don't have to take all the time. and of course it works better for me, when i don't take it often. i guess i don't build a tolerance or something. but it makes it easier to bust into a giggle and have a "who cares" attitude which I desperately need sometimes.

3- get as much sunshine as you can

4- try to believe that you have AS, AS doesn't have you. for me I eat a no starch diet, and by doing that I feel as though for the first time I actually have some control over this disease.

5- sometimes I cry and let it all out, and then feel better for a while.

There's other stuff, can't remember it right now. A good massage is nice too. Just make sure you communicate with your masseuse, "that feels good, or that spot is really tender, or you can go deeper there" etc. etc.

and most important is chat with us here at KA. that really helps me feel more sane to know that others have gone to the ER with chest/rib pain!!

Take care,
Donette

Yes, it is hard. It is hard to understand all the information. It is hard to understand why we were so lucky (sense the sarcasm) to be the ones suffering. It is hard to get through the everyday pain and challanges.
I whole heartedly agree with Donette... 4- try to believe that you have AS, AS doesn't have you.....

You must reach a point where you accept that this is what you have. Dont question why, just accept it. So much stress can be relieved once you accept your new life. Once you have, and the stress of "why" is gone, you will start feeling better. You can then think clearly about what needs to happen to control the pain. I dont know how old you are, or what lifestyle you lead right now, but what ever changes you make today, as hard as they may seem, are for the better.

To control my flair ups, I walk/run 2-3 miles a day 5 days a week. I do yoga and physical therapy at home daily. I visit the physical therapist 1-2 times a month. I get massages 2-3 times a month and I visit my chiropractor 1-3 times a month. I started the No Starch Diet 2 weeks ago. That one has been the toughest, but I am feeling results which in it self, makes it easier to follow.
Because of these changes, I have been feeling better. I have lost weight. I have more energy. And because I am being more mindful of what I am eating, my skin has cleared up, my vitamin levels are getting better and my doc has taken me off 2 suppliments. He is even thinking about taking me off my thyroid pills becase my levels have returned to "normal" and I am on the lowest dose possible and I still cut the pills in half.

So basically what I am saying is... Dont allow this diagnosis to consume you. Easier said than done I know, but one step at a time. You will reach a point where you dont even think about it anymore.

i think everyone has their own ways of dealing with things, so hope you get lots of responses. maybe later i can dig up some old threads with more ideas.

for me, i think its a lot of "distracting myself". i try to keep as busy as i can. i try to focus on other things as much as i can. even on kickAS, i go to the jokes and kicking back part of the forum first, anything funny and entertaining. i watch a lot of comedy shows on tv. i read. i focus on my work as much as i can, sometimes the pain is too distracting, but i try. i surround myself with fun upbeat happy people as much as i can. i try to help others, when helping others, i often forget about myself.

and i try to be very proactive about my body. my mother thinks this is "focusing on it too much" but to me its rather "feeling like i am in control" (even if i'm not). if i can ice something or heat something and make the pain lessen, i feel like i'm "winning". or if i can figure out how to prevent a tendon from flaring. it just kind of keeps me busy and makes me feel like i have the upper hand.

this all only works when things are not terrible. this past fall, things were terrible, and i still tried these tactics, but they didn't work all that well. then i found myself saying, "just hang in there, this too shall pass". leaned on the support of my husband and close friends.

but, if it had been that bad for more than those few months, i think i would have needed to see a professional, gotten professional help, maybe even taken antidepressants or something like that. clinical depression is not something that someone can "fight". its as real as any other chronic illness and needs serious medical attention.

hope others come on with additional advice. others who have had more serious depression, they will have better ideas. i've only written what i think helps me.

Hi Thomas, good question, many here are in the same boat, all ages and all stages of AS. I have had AS for 40 years and still struggle with this same thing. Yes even those of us who are Older in this desease still struggle. I for one am starting therapy next week. We have this sence of handling this desease on our own, cause we are tough. Well, how's that working for me????? Not so well. Even we "dinasours" will admit when enough is enough and search for help. The problem in some areas like where I am, it's hard to find a shrink who works with Chronic pain or chronic desease patients. It took a year and a half to find one. Don't put off getting help if you need it.
Cindy

Donette,

I really appreciate your thoughts! Taking charge of the AS is the plan of attack! I will stay vigilant, look into the book, and continue to pray!

Peace

I thank you for your thoughts! I was beginning to think I needed to stop lifting weights but you have given me hope. Clearly I need to begin to take control with pt, massage and the chiropractor. Does the chiropractor also perform acupuncture? I have heard that some do and that seems like another option.

Peace

Physical activity is REALLY good for AS. Despite being flat on my back for the past 2 days (just coming out of a flare), I know that I feel better when I move - research even shows that exercise like yoga decreases inflammation in the body.

I just saw this new campaign on Youtube:
http://www.youtube.com/watch?v=q-JBT-RaF48

I watched the other related videos, and although they're grossly simplifying AS (and continuing the myth that it's mostly a MALE disorder), I like the KickAS spirit.

As an aerial/trapeze artist, I was really in tune with my body pre-spondy. Pre-Humira, I was about to give up, and then the medicines began working. Although I get flattened about once a month, I keep going. Things are different, but I appreciate my life and ability to simply move even more. Gratefulness and thankfulness to God keeps me positive. He has a purpose through everything.

We *will* KickAS!

Hi there, yah, the mutable nature of AS pain is definitely not easy to keep up with. I think of AS as the Bits & Bites of the arthritis world. A whole new day (handful) a whole new pain (taste) sensation. Every time I think that, I see the commercial for Bits & Bites and it puts a small smile on my face. That helps me to minimize the pain in a way. If I can smile or laugh about it, it doesn't have control. One of the things I love about this place is the way discussions go silly at the drop of a hat. SteveC's philosophy of laughter got me started on this route.

The others have made some very good points. It is about acceptance, but not about succumbing to the pain. Accept that the pain and AS are a part of your life now, but recognize that they are not all you are. You are so much more than this, we all are, but it's easy to lose sight of that. Acceptance is also about personal growth. So many of us, I think, become more aware of other people due to the fact that we live with a potentially debilitating disease and that helps us be compassionate towards other people. It also helps us become more compassionate toward ourselves.

I know what you mean about the hypochondria thing. Try keeping a journal that includes: pain levels, pain locations, weather, what you ate, physical activity (not just exercise based, but also what you did that day), your emotions, new treatments you're learning about, your current treatment plan, questions for your doctor's appointments. It will really help you gain a better understanding of your particular version of AS, as well as helping you keep track of pain/inflammation triggers and things to talk about with your doctors. It will also help to get negative thoughts out of your brain so they don't fester there. If you can read them, it can become easier to be a bit more objective.

And keep coming here. These are some of the best folk anywhere.

Hugs,

Kat, my brain started swimming when I read through all the things you suggested tracking in a journal. I have tried doing this many times, several different ways and it totally overwhelms me. Maybe I have ADD. Well, I'd explain more, but a daughter is taking a match to leaves.