Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Depression, BAD; is there any hope?

This could turn be a long post, but I will try to stick to the basic info so you don't get bored.
I take Humira, 4 to 6 10/325 Hydrocodone, 75 mg Effexor, and 5 or 10mg steriods daily, Humira is only twice a month. I have been on the pain meds and steriods for over 2 years. I was force to quit working in late 2003 due to pain in feet, hips, and back. Since then I have gained 60lbs. I am 43 years old and my life feels like it is over.Yes, I am on disability and medicare now. I have gone down hill so bad in the last year. I have NO energy, just taking a shower is so bad I have to sit down and rest after. To go to Wal-Mart for grocerys is unbearable. Befor I ever get out of the store, I am briething like a racehorse after a big race. I had started using a Gazelle exercise machine, which threw my siatica into spasms, so I stopped that. Recently, started walking my dogs around the block for exercise, yesterday my feet hurt so bad if my husband and parents had not been here I would have just cried. I lost 7lbs in the last 2 weeks of walking, but I guess that is out now also. I have several bone cyst in both feet, I suppose that is what is hurting so bad, however I did buy a pair of $65,00 new balance walking shoes so maybe this would not happen. I cannot even clean my house, which is so wrong. I have always prided myself on how clean I liked to keep my house. I am rambling I guess.
I want to know if you guys think this weakness, and short of breath could be caused by any of the meds I am on. Oh yes I do smoke, however I am trying to cut down, however this depression does not help any. I do not know what to do anymore, I do not even want to get out of my chair, because I know whatever it is I am needing or wanting to do, I CAN'T!
I have a 14 year old boy, who is very active, and has to put up with a mother who acts like she is 80 instead of 43. I tell my husband I am depressed and he will be quite and not bother me.
But this is bad, I am not sure that I can stand the thought of living like this forever. It is a horrible way to live at my age. I can't really talk to anybody close to me, most would not understand, and my mother just wants to do everything for me, or keeps calling wanting me to go do something with her and I just can't make myself get up and go anywhere that I do not absolutely have to go. Any information on any of this rambling would be great.
Debbie

Debbie, I don't have answers to your specific questions, but I would like to offer friendship and a hug, a shoulder to cry on. Depression is a big part of the pain of AS. You are in the middle of a huge flare and it will ease up, I'm sure of it. Tie a big knot at the end of your rope and hang on, and keep in touch. The best thing you could do was to let us know, so we can be there for you in friendship and prayer...

HI,.... I AM SORRY THAT YOU ARE FEELING SO MISERABLE AND HOPE THAT YOU FELT MAYBE JUST THE TINIEST BIT BETTER BY WRITING YOUR POST. IT IS VERY HARD TO TRUST ANYONE WHEN YOU ARE FEELING SO LOW THO SOMETIMES YOU DO IT WITHOUT REALISING YOU EVEN HAVE.. [IE. WRITING ]IT SOUNDS LIKE YOU HAVE BEEN LIVING SOME AWFUL NIGHTMARE AND HAVE WOKEN UP AND DECIDED ENOUGH IS ENOUGH[AND YOU ARE RITE IT WOULD BE AN AWFUL WAY TO LIVE OUT THE REST OF YOUR LIFE]AND REALISING THIS I WOULD TRY TO CONFRONT YOUR DOCTOR WITH YOUR FEELINGS AND HE WILL THEN FOLLOW WITH THE APPROPRIATE ADVICE...THIS CAN BE VERY HARD BUT YOU MUST REMEMBER THAT YOU WANT TO START TO FEEL SOME SORT OF LIFE AGAIN AND LOOK AFTER THAT ENERGETIC SON OF YOURS.I CANNOT OFFER ANY CLUES TO YOUR BREATHLESSNESS AS I DONT NO THOSE DRUGS BUT I WOULD ASK YOUR DOC ABOUT THIS AS WELL.YOU ARE VERY LUCKY AS WELL TO HAVE A CARING AND SUPPORTATIVE MUM SO DONT FORGET MUMS WILLINGNESS TO HELP.GEE I HOPE THAT YOU PAT YOURSELF ON THE BACK AND NOW KEEP GOING FORWARD,,BEST WISHES JUDE2

hey deb, sorry it's been so rough on you lately. I can't tell you what to do about all these things going on but I can tell about some things that i have noticed when i have flares or just real frustrating times. oddly enough, these things seem to go hand in hand. one perpetuates another in most of my cases. if i feel overwhelmed about something at work or in my family or even about my disease and it starts to penetrate my brain and haunt me...my pain increases. I won't even realize that I have been worried or overly stressed about something, but I will have more pain and begin to feel more depressed and it becomes a vicious cycle. it also happens when i go into a flare and my pain increases, which causes more stress at work, which makes want to be home more, which causes me to isolate my self into a hermit, which makes begion to hate my life and then I begin what my mom calls catastrophic thinking. I tell myself that life isn't worth it, too hard, not good anymore....yadayadayada. what it comes down to is that i hate the fact that i can't get control and I can't live the way that i want to and I feel that there is no help for it and it will always be this way. none of that is rocket science but i kid you not...my exhaustion rates will exponentiate when this happens. I will get seriously exhausted and find my self huffing and puffing over a shower or getting up from my perch to go make tea...yap...exhausted. However....i do think there's hope for you. Gotta find something to deal with pain, even if it means pestering the doctor with another meaningless appointment. that is something that gives me hope. maybe THIS time something we do will help...and gives a little empowerment cuz you're no longer toiling in the misery, you're acting on it in some way. even tho you want to lose weight, i think that if you're feet are messed up, you gotta get that under control first. when you have something that hurts....don't beat it up with a function you're trying to perform or you'll set yourself up for failure. find another way, even if its just stretches right now to keep you in the groove, even if it's not the weight loss groove. then take it a day at atime and give your self a lot of grace to be human and weak. it's ok. because i think it will pass in time, hopefully less time but I do think it will. you have to be the boss in your head and your heart but your body has to tell you when. then you can take care of yourself and love yourself all at the same time...gives you a little more control while your body has it own private nervous breakdown. sometimes it has to run its course and then it starts to change. I don't know if i've helped at all...maybe just babbling myself, but these are things that i notice, and sometimes its not the physical that needs to be tackled...sometimes it whats in your heart and your head. but chin up, you can always come and chat with everyone here and we'll be here. hang in there..something good will come your way...I really don't believe this is forever. it just needs to be worked on more. Amy

Thank you both for answering so quickly, and for your kind words. I do suppose the thing to do would be tell the doctor about my depression, I just figure he will think I am whining and will get over it. But thank you very much for writing to me, and I hope you guys are doing well. I will keep thinking, or trying to cope I suppose are the right words.
Thanks
Debbie

Hi, Debbie:

Certainly there is hope, but mostly if you give up the drugs. Weight gain and mood changes are almost certainly due to the steroids. You have polypharmacy--too many drugs (including the nicotine). I hope that you can recognize your toxic lifestyle and begin to make the right choices--I would say all at once, but with steroids it is important to take some time to wean off of them. After that: A cleansing fast can be very helpful to begin with.

"Humans live on one-quarter of what they eat; on the other three-quarters lives their doctor." - Egyptian pyramid inscription, 3800 B.C.

It is also important to eliminate starches, especially refined and soluble, after the fast so that you will not need the drugs anymore, or can at least cut down on them considerably. I hope that you will visit us on the NSD Forum for support.

Good luck to You,
John

Hi Debbie,

I'm the same age as you and have been through times where I felt very desperate and it all seemed so hopeless, but please trust that things can and will get better. It's probably a good idea to make your doc aware of exactly how you're feeling. Write down the things you've told us so all the details are clear.

Here are some of the things I do to help lift myself out of a bad state. First off, a clean house is seriously over-rated. I have learned to ignore the mess unless I might trip over something. I know it's a matter of pride but folks don't love us because of how shiny our floors are. I've also stopped shopping at any store that is the ridiculous size of a few football fields. I will drive farther to visit a tiny store that is more walkable. I thought exhaustion from taking a shower was just my own little quirk, but I've found a nice hot shower can set off extreme fatigue for me, so even tho it feels so good I resist and go for medium temps until just the last few moments.

Shortness of breath and weakness is something worth mentioning to your doc. AS can cause lung inflammation, and lack of chest expansion can be a factor. Depression often has a component of anxiety in the mix too so perhaps that might be an avenue to consider since anxiety can cause you to feel like you're not breathing properly. Unfortunately, depression often comes coupled with chronic illnesses because it's just not much fun to live in pain all the time. It is not a weakness, just a part of the whole deal we need to fight. Perhaps an anti-depressant med could just help get you through this tough patch.

One of the hardest things I found was saying no all the time to folks who wanted me to go out when I knew it would only be unbareable. But isolation can really make depression worse so it's a rotten catch 22. In my mind I think the answer is to invite others over, but I have to admit that I haven't really put this theory into practice much. I do try to look for fun things to do to boost my spirits, and make a conscious effort to exercise a bit as this really helps to counter depression. With sore feet, pool therapy might be the best option if that's available in you area.

I'm not familiar with your mix of meds to know if that could be a factor but talking this out with your doc might hopefully lead to something helpful. No matter what, keep looking at any option and remind yourself that there will be better days ahead. There really will!

Big hugs,
mig

Hi Debbie,

Welcome to KA. I am very sorry to hear of the troubles you are going through. If you check your mailbox here at KA (look for the flashing letter at the top of the screen by your login name, and click on that), you'll find that I sent you a private message about your post.

Brad

Sorry you are having such a hard time.
I would like to comment on depression which is so common among ASkickers.
In my case , i convinced that depression was casued by physical pain and medications , such as NSAIDs,and steroid make it worse . So I ended up being caught in a cycle until my came across here and was currently on NSD,coupled with NSAIDs whenever it's needed. I noticed that steroid paticually affect your mood. I am happy i am off steroid.

I also went to swimming pool where spa facilitise are available and had a good sweat in the sauna everyday that helps me to relax after a long day.

I hope you can find other alternatives remedies to help you throug all this.

Best wishes
Charlie

hi Debbie,

I spent most of 2004 depressed and ended up with a short stint on anti-depressants, 2 months off work and 6 months seeing a counsellor. The counselling was very helpful in helping me learn some different techniques to manage a chronic condition and also in waking up to the fact that I did need to make changes to my life and that it wasn't necessarily a bad thing, just something i had to do. I still have periods when i'm very low, like this disease is ruling my life, but i do find I am able now to step back and find a little perspective, often coming here helps me do that Being honest with my friends was also a huge thing, I kind of dropped out due to the depression, the pain, the fatigue...and rather than going along for a short while i just didn't bother, which didn't help.

so you're by no means alone and from my experience there certainly is hope, and maybe chatting to your doc will be a first step? how do you sleep? It was lack of sleep that i think set me on the slippery slope to depression and its the fatigue that often has me in tears rather than the pain.

As for the breathlessness and weakness, it could be meds, I have had weakness from NSAIDs before, I haven't experienced breathlessness though. Defo something to mention to your doc.

I hope you're feeling a little brighter today.