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OK I THOUGHT I WAS GETTTING BETTER BUT TODAY I JUST WANNA CRY I DONT FEEL RIGHT, I AM TAKING LIALDA AND IT IS WORKING BUT ALL I THINK ABOUT IS THIS ILLNESS AND I AM HAVEING VERY BAD PANIC ATTACKS

 Reply posted for divotrl.

I am so sorry you want to cry.  I have been fighting this disease  with my daughter for 2 years she too felt just like you to the point that last school year she left traditional school, the kids (she is in highschool) told her since her diagnosis she had changed and wasn't the same and she didn't fit in anymore, it only consumed her stress levels even more.  I started her in counceling and got her on meds for the anxiety and she did much better, also finding a med that will control your flares will help you a ton, she take remicade every 7 weeks and holds quite well so please don't give up there is a light at the end of the tunnel, and please don't be afraid to ask for help, the meds for stress and anxiety do help

 Reply posted for samon42.

  You're NOT alone, I was diagnosed about 4 months ago and the medication put me into remission after a month and was feeling great and back to my old self, or so I THOUGHT.

I've since taken myself off my maintanance drug, Lialda and am still in REMISSION so to speak, because I was and still am suffering daily from Extreme muscle and overall body fatigue.  I wanted to see if it was the meds doing it and for the past three drug free weeks, I've suffered thru bad joint swelling, aching(more than normal) and depression.

I have days I want to cry, I feel you. I thought since I wasn't symptomatic (toilet wise), I was gonna be GREAT...NOT

I am trying to get some answers on the fatigue, it's unbareable and it's hard to function. It hits me like a ton of bricks and lasts most of the day...

If it's not the meds........is it the disease? Even though I'm in REMISSION?  No one seems to know...

All I can say sweetie, is I'm here if you want to talk, lord knows I could use an understanding soul to reach out to, my husband just doesn't GET IT and we argue......I take care of the house (spotless 24/7) and my almost 2yr. old 12-14 hours everyday.......I'm going down in flames.....and he doesn't understand ........so, I'm here if you need me :)

Bless you and hang in there

Tina

 Reply posted for divotrl.

I understand. There are times when these disease seems to consume every waking moment and thought. My emotions since my diagnosis 14 months ago have run amuck... from pity to anger to depression to anxiety... you name it!

What seems to help me is first, having a support group. I talk with my husband, my dad, my friends, and also the people I work with. They have listened, researched, and can talk with me about my illness. Although none of them have this condition or anything similar, they show empathy and give me support. Reach out to someone... find a friend or family member... and cry on their shoulder. 

Secondly, I find it helpful to reserach medicines, treatments, biology, anything that can help me help my doctor. Doctors know a lot, but the more you know, the better you are. Information and knowledge are power, and they can help you feel that you have some level of control of this horrible situation.

Thirdly, refocus your attention to things you like. Find a hobby that you can do close to home or at home - whether it's crossword puzzles, reading, sewing, scrapbooking, playing online games - so when you're having a bad day and you're stuck in the house to be near the bathroom, you can still do something you enjoy. Keeping your mind busy helps.  Believe me - I've been stuck inside for many days - and having something to focus on, to redirect my attention - has been a HUGE help.

And finally, if you feel like crying, cry. Get it out. Don't keep it bottled up. Dealing with a chronic medical condition brings with it a whole range of emotional responses. Get it out, and then plan your next step. 

Continue to talk with your doctor, take your medicines, and take one day at a time. Try to enjoy the days you feel well and make good use of that time. When you're feeling bad, ride it out with your family, friends, hobbies, and tears, if needed.

 Reply posted for divotrl.

I have days when I feel the same way.  When I was first diagnosed, I felt great for the first month.  My meds were working and it was nice to finally know what was wrong with me.  Then a month later it all hit me that I will have this disease the rest of my life and I started having anxiety issues.  I ended up taking xanox and it helped me get through that rough patch.  Now have have a supply of xanox on hand to help me when I need it.  Some people are on anxiety meds for years and others just need it for a short time.  This disease is always in the back of our minds even when we are feeling well.  Some people can deal with it just fine.  Others, like myself, need help occasionally. 

Don't hesitate to talk to your doctor about your panic attacks.  Maybe they can offer some suggestions.  Even if it's just some relaxatition techniques.  I know not everyone is willing to take anxiety meds, but sometimes that is the answer too.  It doesn't mean you will be on them forever.  Hang in there.