Unrelenting Constant Pain - How are you able to work full time?

[skeetor]

Hello fellow "bladder sisters" , I'd like your opinion on what I should do next. I went to a urologist in May on the recommendation of my OB/GYN due to the symptoms I was having (pain in lower abdomen/back, caffeine making me urinate constantly, etc.). The GYN treated me for bacterial vaginosis and candida but when it would constantly come back he suspected IC. I was diagnosed with IC in May by a urologist with the potassium instillation test. I guess I was in denial and refused to believe that was the diagnosis so saw a urogynecologist who said it could be endometriosis in the bladder/ bowel or IC. He performed some urodynamic testing this past week. When the saline solution was instilled in my bladder I could feel my bladder start to spasm and saw it on the monitor by the spiking waves it created. Interestingly the abdomen also was spasming. He then injected Marcaine and you could see it start to flatline on the monitor. I was in so much pain following the test the past three days I had to take pyridium just to keep the pain about a 3 on 1-10 scale.
Anyway, I am in daily constant moderate to severe pain. It never goes away and I have nausea probably from the pain. My lower abdomen and back are killing me. Ultram makes me sick and so does Hydrocodone. I started taking Elmiron 100 mg three times a day this week and Hydroxine 25 mg at night. I can't take the Detrol LA because of my LPR (reflux in the throat/vocal cords) it makes it worse. How does anyone drag themselves to work full time every day with all the pain? It's been a living hell for me. Do you think I should still get a colonoscopy just to make sure it's not bowel? I had a CT scan of the abdomen July 3 due to severe abdominal pain which was negative. What about CT of the lumbar spine to rule out any spinal nerve involvement?
What oral pain relief works well for you all? I'm kind of afraid to try an instillation because I read it might make the pain worse before it gets better. Is it normal to have daily constant unrelenting pain with IC? I have pain more than I do any frequency. Thanks for all who respond.

[Lishypaz]

Hello, Skeetor!
I have had very similiar experiences and just underwent the colonoscopy to also rule out bowel problems--the prepartion for the colonoscopy of course exacerbated the IC. Currently, I take Sanctura 2x daily, Elmiron 3X dailiy, and rotate between ultram, hydrocodone, and codeine. Its basically a trial and error system to see what works on the extent of pain I am feeling at the moment. Sometimes, its ibuprofen with hydrocodone. I am also on the elimination diet, currently, because caffeine and any type of soda really makes things worse. I also work full time+ and am going through that period of "I don't know how I can do this anymore." I finally gave in to my neurologist and went on elavil as well as celexa. They are supposed to affect the neurotransmitters to reduce my sensations of pain. Although I would have denied that I was depressed until I went on these medications, I now know that I was! Before the combination of these two antidepressants, my pain was an "8" on the scale of "1-10" at leasts 1-2 times daily with an average sensation of about a 7. Now I am regularly a 2-3, and I have the spikes of a possible "7" each day and an occastional higher spike. The other thing that has helped me is simply spending a day in bed a week. I have three boys (10-13) and a husband who has endured this for the last 8 years, so now they just all adjust if they want me to be better the rest of the week. They come and sit with me while I crochet, read, or watch tv. I am a self-proclaimed work-a-holic who attempts to be there for everything--my job, my kids, my friends, sports, church duties, volunteer work, etc... and I have found that if I just spend a day "recouping" each week, I am much more amenable the rest of the week. I also am learning to due rescue instillations and I have a hydrodistention every other month or so. Its not the best system, but this is what is starting to work for me.

Good luck and I hope this helps! Prayer is a good pal of mine, too!

[armslee]

Hi Skeetor-
You are in a very difficult stage right now. I felt the same after diagnosis and it will take some time for you to work with your doctors and your body to find a medication regimine that will work for you. Depression is very real with this disease. Please contact your physician and talk to them about this! I went on Lexapro and it has helped me a great deal.
I too work full time and have had a very hard time doing so. At one point, my doctor put me on a restricted work schedule that did allow me some healing time following 2 surgeries. Rest is VERY IMPORTANT!!!
READ everything about IC that you can. Start the IC diet and soon you will learn what foods you can and cannot tolerate.
Instillations may be helpful, they were to me for awhile, however I have severe pelvic floor dysfunction too and am no longer able to undergo them. If you want to talk more, send me a private message and I would be happy to speak with you about anything!

Keep your head up! Things will get better, it just takes time.
Blessings and warm healing thoughts,

[Briza]

My meds...any one of them and sometimes a combination of all of them. See list below...
Best wishes. Hope you get some pain relief soon! It can make life almost normal :) if you find the right med or combination of meds that work for you.

[ICNDonna]

If you're having problems with nausea with medications, I suggest you talk to your doctor about taking anti-nausea medications with them. I can't take pain meds without taking my phenergan tablets at the same time.

Donna

[Sarojini]

I know it is hard to go to work, especially in the beginning when you haven't found treatments that work for you. It was nearly impossible for me at first... work was 20 minutes away, but I'd have to stop 2 or 3 times to get to a bathroom due to urgency and pain in the beginning, and of course, there was the fatigue and pain all day too.

However, now that I've found a combination of things that help, it's easier. Yeah, sometimes I have days when I want to just pull the covers over my head and hide from the world, but my meds usually kick in and my hot shower revives me a bit -- and I head in to work despite the IC.

I think you'll find that, once you've ruled out everything else, and can work with your doctors to find what helps for you personally, you will find your work dilemma partially solved.

Many of us have IC, IBS, fibromyalgia -- some all at the same time -- yet we are able to work due to proper treatment :) Keep your chin up and keep pushing ahead; you'll get there too :) :grouphug:

[skeetor]

Thank you Lishypaz, Armslee, Sarojini and ICN Donna for your encouragement and advice. I feel there is hope and I will never give up! Bless you

Renee

[ICLori]

I dropped out of the workforce when my IC hit - I was voiding 40 plus times a day/night and couldn't sleep. I was in pain all the time. I did have some remissions that first year or year and a half, and every time I had a short remission, I'd think about going back to work, but then it would hit again, worse than ever.

I wish I had been tough enough or strong enough to still work - the money would have been nice, and I wouldn't have been so isolated and depressed and my self-esteem wouldn't have been so low. I think if you can force yourself to work somehow, it's for the best. I regret that I dropped out of the workforce and I have no idea how I could go about easing back in, at my age, with five years sitting at home with my illness...

Blessings, and best of luck to you,
Lori

[timeoutsparkie]

I don't know how people do work full time but I seem to somehow. Some days it is unbearable. I have endometriosis but had a hysterectomy and back problems from being hit in a crosswalk. Now this bladder pain and constant need to go. Some days I am just in agony and can't wait to get to the end of the line. People can be rude when you want to stop to go use the washroom. Then again lots of people are rude in general when you deal with the public.

[ShePurzz]

I have asked the same question many times -- I am so impressed with those that do work a job -- full or part time. There are so many things that you need to adjust to make it happen.

For me, the anxiety and panic attacks brought on terrible depression and after 14 years, I was finally forced to apply for SSI -- I got it the first time through and am not sorry -- it helped to reduce a lot of the stress, and I no longer feel like a living financial burden to my family because I do have a little income that helps cover my doctor bills -- however -- we will probably never make a great living -- my husband job just covers our bills. I try to work from home as much as I can and do jewelry and a few other things to help bring in a little something.

For yourself, I hope you truly try to rest as much as you can and do as much of the natural stuff that you can to help you out. Heating pads at night or during the day if you can for your back or abdomen -- those stick on kind work great on your back -- my hubby got me one last sunday when I was really sore. Also, check out the post I put up regarding sleep hygiene -- If you aren't getting good REM sleep, you aren't functioning at your fullest the next day -- and that post has a LOT of great ideas that will help you get good sleep -- every night and I don't need nearly as much medication when I am sleeping good.

I hope it helps you to know you have a lot of support here too!!!

Feel Better Soon,
Mary

[ihurttoo]

I have been disabled due to IC, Fibro, and Lupus for the past 4 years, (although I finally got appoved for SSD in Feb, they back dated me for 4 years.) I am amazed an astonished that so many of you are still able to work. I also have constant, unrelenting pain, so I have NO idea how someone could possibly work in this condition! But, I have the utmost respect for those who can and/or do! It is truly awe-inspiring to me and I hold you guys in the highest esteem. I am really and truly proud of all of you who force yourselves to go in, no matter how bad you feel, and put on a smile.

I have talked to so many ICers who keep it a secret, for fear that their bosses and coworkers wont understand, or will harass them for taking pain meds, or think they are malingering because they have no idea of the true severity of this disease. So, they just go in and put on a fake smile, and work all day in pain and/or feeling like they have to go to the bathroom all the time, while being totally exhausted from getting no sleep the night before b/c they were going to the bathroom all night long! I feel so sorry for all of you that have to do this. It honestly kills me to know what you are going thru, because I have been there, and even though it was 5 years ago, I STILL remember.

Now, no matter how I hurt, I tell myself that at least I can be at home, in my own bed, while I suffer. (Although I do have a son, who is 5, that I have to get up and do things for no matter how bad I feel, but I know it is not the same as what you all do, not even close!)

My hats off to all of you!! Some people respect movie stars, politicians, ball players, etc. Not me! I give my respect to people that earn it, and you all, who trudge on every day, despite pain that would make a Masochist cry, you all are the true heros, and dont you ever forget it!!!! You are in an inspiration to all of us!!

Hugs to all of you, Amy

[armslee]

Amy,
You are so awesome! Whenever I am having a bad day, I read one of your posts and immediately smile!
Lots of love-
:kissing:

[mary124]

Amy:

I thank you too! Thanks for the encouragement- especially today. I just wanted to stay home in bed. Went to the doctors yesterday for a DMSO treatment - was in pain all night long/going to the bathroom as well. Too tired to even get up out of bed, but here I am at work - hopefully, I will start to feel a little better after awhile.

[ihurttoo]

Thank you, Wendi! Your post just made me smile too! :smile tee See how great we all support each other!!! Lots of love and hugs right back at ya! Amy:kissing: :grouphug::smile tee

[ihurttoo]

Amy:

I thank you too! Thanks for the encouragement- especially today. I just wanted to stay home in bed. Went to the doctors yesterday for a DMSO treatment - was in pain all night long/going to the bathroom as well. Too tired to even get up out of bed, but here I am at work - hopefully, I will start to feel a little better after awhile.
You are welcome too! You and I must have been posting at the same time! LOL! I am so sorry that you are having a rough pain day and are so very tired. I hope you get to feeling better very soon.

Just remember while you are at work today, trying to grin and bear it, thinking there is not a soul in the world that knows how bad you feel, please know that I know and so does God! I am very proud of you for going in on a day that I am 100% certain is worse than ANY day your coworkers have EVER stayed home sick! You and all of the rest of our working ICers truly have a work ethic that would shame most of the rest of the world by comparrison! (sp?) I just hope you know how very proud the rest of us ICers are of all of you! We all KNOW exactly how bad you hurt. We know that we dont hurt any worse than some of you who are still forced to work because you have not yet been approved by SSD. And we honestly have NO idea how you do it! But, I do know that we are all very proud of you, and you should all be proud of yourselves! You are all terrific role models for people on what true work ethic is!!

I hope today passes very quickly for you, and your pain and exhaustion subside soon! Hugs, Amy

[armslee]

Oh I wished this day would pass quickly! I started my period yesterday and today......:cussing:
I am just glad you cannot decipher what that little "smilie" guy is saying because it wouldn't be pretty! ! HA!