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Anyone elese feel like this - pain + fatique?

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Posted 3/21/2008 3:19 AM (GMT 0)
  I haven't been on this site in months, until this week, but I have been missing understanding and communication from others who truely understand. 

  I have been debating on which catagory to put this under, as I also have fibromyalgia and depression, as well as other dx's, but IBS is my primary and oldest problem.

  I have pain daily, but sometimes the flares are worse than others and lately I seem to stay sick longer.  I am often in bed with pain and fatique for days at the time.  I hate being like this.  In addition, it makes my depression worse because I feel useless; I can't work anymore or do housework like I use to: my house stays strowed a lot.  I don't feel like getting out of the house most of the time.  Occassionally, I feel half way decent and I do get out and do something, but I seem to always pay for it later that day or the next.  Then, I am in bed often 2-3 days with the pain and fatique.  The pain is entire abdomen worse in upper right quad,(I have had my gallbladder removed), but in addition, I have the widespread fibromyalgia pain and awful fatique.

  I am 38 years old and I absolutely hate being this way.  I use to be so active and enjoyed doing things, that I am no longer albe to do without suffering for it later. 

  Also, I am waiting on decision from appeal to disability and we struggle to make ends meet financially since my husband is the only one working. 

  Usually he is understanding about my condition, but like me, he gets tired of it and I know it bothers him.  Especially when he would like for us to do something and I just simply cannot.  Then I feel guilty even more so than normal. 

  Main question though is does anyone elese experience this to this extreme and if so, how do you cope with it physically and mentally?  I take pain meds which help, and I use a heating pad which helps, but the pain and fatique from it all is awful.

  I would love to know if I am alone in this or if others experience this as well.

Posted 3/21/2008 7:44 AM (GMT 0)

Well, I don't have fibro but I do suffer greatly with severe IBS and have for decades now.  I completely understand your inability to function as you wish you could.  For me, IBS is the most dysfunctional "functional" disorder I have ever had, and I've had a few others! 

For me, it's such a mish-mash of many problems.  First, there is the pain and discomfort, then comes the anxiety about the pain and discomfort.  This is always accompanied by a great deal of embarrassment and shame because I feel like I've allowed this to get the best of me, something I feel certain is a testimony to my "weakness of character".  All of this feeds into the gloominess and regret that inevitably results from missing life's opportunities.  I missed my son's engagement party last weekend because it was held in a venue 60 minutes from my home and at 8:30 in the evening.  Because I am nearly incapacitated after I eat a meal, I fast all day until I am home for the day and make no plans for the evening.  Going to a function like this would have meant not eating until I got home, perhaps at 10 PM.  Even then, there is no guarantee that a "situation" would be averted and at the very least, my empty stomach would be filled with gas and pain by the time the night was over.  These days, I try not to put myself through agony on purpose - it's enough to just deal with the random misery!

I will say this.  I really try not to give in to the inertia that wants to drag me down.  I don't stay in bed, not matter how icky I feel.  I get up, get dressed, and at least attempt to make a day for myself.  I may not get out of the house, but I will get out of my bathrobe, and attempt to distract myself from my pain.  Because IBS is so closely connected to our emotional and psychological well-being, I believe that allowing it to get the best of us is only going to make things worse.  While I do suffer moments of hopelessness, I will not let myself wallow in that because I do want to have a fulfilling life, even if I am limited in some ways. 

Good luck and keep posting!  You will get lots of support here!

Posted 3/21/2008 1:29 PM (GMT 0)
Hi Floss

Although I don't really have any advise to offer for you, I just wanted you to know that you are far from alone. I don't have the fibro but do share the anxiety, depression and the one I find hardest to deal with on a day to day basis ... IBS. Most days I too have pain to varying degrees, and terrible fatigue. Most days when I eventually wake I can't bear the thought of getting up and facing another day. If it's not the fatigue overwhelming me, it's the fear of another day not being able to function on even the most basic level no matter how hard I try.

"I am 38 years old and I absolutely hate being this way.  I use to be so active and enjoyed doing things, that I am no longer albe to do without suffering for it later"

I too can relate only too well to this ... and when you feel like this it makes it all the harder, the more times you have felt knocked down for trying.

Sometimes I don't know how I cope with it but I seem to. Unless it's a really extreme day and I really can't get a grip on I WILL get up, get the most basics done. I don't plan alot, or too far ahead. I just take each day minute by minute and see how far I can get. Surprising how much further you can get and how much more you can achieve (even those littlest things :) ) when you don't set out each day under a mountain of PRESSURE. Also important not to be so hard on yourself or beat yourself up for the things you can't do, or if you can't manage anything on a extra bad day.

There is alot of truth in the philosophy that when you swim against the tides, you never seem to get anywhere. Whereas if you let the flow take you ... things seem that little bit more easier to cope with. Not to say you shouldn't try ... just lessen your expectations and focus on the moment .... little steps.

Best of luck Floss & let us know how you're getting on

Tizz :-)

 

Posted 3/21/2008 3:38 PM (GMT 0)

Hi floss,

I am usually on the fibro board, but I have had IBS for longer than I can remember.  I have had fibro for 51yrs., so I have had a lot of experience with both.  As far as the IBS, my doctor put me on lomitil and that stopped all my frequent trips to the bathroom.

You probably aren't going to like what I have to say about the fibro.  First of all you are not doing yourself any favors by staying in bed for 2-3 days at a time.  The 3 most important things to remember when dealing with fibro is your attitude must be good, take your meds and get exercise.  Gentle stretching, walking, yoga, massage all help.  You do need to take breaks and rest, but it is important to keep active.  There are lots of ways to deal with the pain, and if you jump over to the fibro forum you will find lots of good advice for dealing with the pain and everyday challenges.  You can learn to live a full life and join in activities with your husband if you are willing to make the effort and make a few changes.

I know that this sounds like I am being tough on you, but take it from someone with a lifetime of experience.  You won't get better until you are willing to make some changes.  We all suffer from the pain, anxiety, depression and challenges of living with this, but it can get better.  Give the fibro forum a shot, you'll find many people there going through the same thing that you and I are.

Posted 3/21/2008 5:42 PM (GMT 0)
First Welcome Floss. This is a great place for support. You are not alone. I suffer the fibro and the IBS. I am 39. So like you I am young and used too could to alot of things.

I know my husband resents me for how I feel. I tend to be bit like you, I wont stay in the bed the entire bed, but I might lay in it til 10am on some days.   I do try to go for a daily walk, even it kills me and its not my entire walk, I have to make the attempt. And with two non-helping children, it like a double whammie.

Stretches are good too. Matter of yesterday was one of my worst days yet. I dont know if it was the fibro or the arthritus, but my tailbone sacral area hurt so bad, there was nothing I coould do to feel better, I was miserable, but I made my self stretch, and today I do feel a bit better.

Pain killers, when I got them, help too. Bextra is the med I really miss,wish they had never taken it off the market. It helped so much with no side effects, i loved it.

So again you are not alone, but like the others say dont give in to it, meet yourself halfway, thats what I try to do most days. Good Luck and ((HHUUGGSS))...... smurf ......

Posted 3/22/2008 3:21 AM (GMT 0)
Thanks for all the replies and advice. It helps just having someone listen who truely understands the challenges of trying to function on a daily basis with IBS and other problems.
I try to keep my spirits up, I really do, but sometimes it is just so overwhelming, I guess I am just weak minded at times. This is when I get into trouble. I try to go and do and I do, but it just always gets me after I do and sometimes way worse than other times. When I get in such pain as the last couple of days have been and no matter what I do, I can't get past the pain and fatigue, I end up getting depressed badly. I have had so many episodes of going and doing only to end up ruining the trip for others due to horrific pain and having to find a bathroom in a great hurry over and over and getting so embarrassed in addition to the depression and anxiety it causes me. I rarely make plans ahead and like some of you, I have missed out on some really important events that I wanted to attend so badly. IBS is the worst functioning disability I have and I hate it. The fibro is no fun either, but to me it isn't as bad as my IBS.
I will try to get my spirits back up and try, try again to deal with it: sometimes it just gets me and it got me this time.
I will read on the fibro board to see what I can learn.
Thanks again for the advice and for listening.
I hope you all have a good night.
Posted 3/22/2008 8:21 AM (GMT 0)

floss,

I think we all get to that point at times where we just want to crawl into a corner and have ourselves a pity party.  It's especially tempting to do this because IBS (and fibro, from what I understand) is such a misunderstood disorder.  People generally don't understand (unless they have it themselves) and because it's not something one can actually "see", they often doubt the severity of the problem.  I have battled this all my life with friends and family but I don't do battle anymore.  I don't explain, apologize, or go into lengthly descriptions about my guts.  I have learned to simply say "no" to invitations that are impossible to accept and fulfill.  I have learned to tell people that I will "do my best to be there" and they all understand, after many years of knowing me, that this is code for "depends on my guts".  I make sure friends and family know how much I love them and want to spend time with them but that our gatherings may have to be on my terms and not theirs.  I host get-togethers at my home so that I am close to my comfort zone.  I plan visits close to home and during the hours of the day when I usually feel my best (mid afternoon).  I assume that if my peeps want to see me, they will be flexible and so far, it's worked out fine.  There are times when it does pain me to miss an event (son's engagement party) but I try to create alternatives when these things happen.  I am going to host a small engagement party at my home for the family members during the day.  This way I get to celebrate this blessed occasion in a way that will be enjoyable and less stressful for me.

There comes a point in the IBS experience when you just have to stop worrying about how everyone else feels or how they perceive this disorder.  I have put myself through so much shame, regret, remorse and guilt because of my inability to "join the party".  But we have to remember that these types of emotions will likely lead to a worsening of symptoms as they cause a great deal of stress.  No more.  Learn to say "I can't do it" and then let it go.

Posted 3/22/2008 12:21 PM (GMT 0)
Floss, anti depressants do help, not only with depression, they have been known to help with pain as well, just a consideration.... smurf ..
Posted 3/22/2008 12:55 PM (GMT 0)
Hey floss...hang in there and keep venting away, that's what we're here for. I'm sorry you have been feeling so rough lately. And that your husband is having a hard time coping with it. You will find that same sentiment echoed all over these boards, that people's spouses have a tremendously difficult time dealing with their loved one's illness. Because it IS very hard to do and they, like us, were just forced into this situation over which they have no control. I have gotten positively incensed by my fiance's reactions to my illness at times, but in my more thoughtful moments I do remember that this is a scary and helpless time for him as well.

As far as your symptoms, do you by any chance belong to a gym? This might sound counterintuitive, but exercise is one of the best mediators of pain and fatigue there is. If you have fibromyalgia, something like water aerobics could be a lifesaver for you - and still be easy on your joints. I find that even if my bowel symptoms don't improve with exercise, I invariably feel better emotionally when I stick to a consistent exercise routine.
Posted 3/23/2008 7:28 AM (GMT 0)
  Let me just say first of all thanks again for letting me vent away and for replying to my posts.  I look forward to reading what ya'll have to say and it helps me a lot just knowing that I am not alone, as I sometimes feel like I am.

  My spirits are much better today and even though I still have some pain, (as always), it wasn't unbearable today and I was able to go out shopping a little with my mama for a few hours.  I cleaned my house just a little and died easter eggs this evening.  Then I kept my one month old granddaughter for a few hours and enjoyed that very much.

  I feel as though I should explain how I managed to get into that depressed mode and major pain the other day.  I will try to make this brief.  My 22 y/o daughter still lives at home with us and on Feb 20th she had her first child and my first granddaughter.  This has given me great joy and has brightened up our days tremendously.  However, getting to this point has been difficult as she is a single mom and the father was only involved before the baby was born when he chose to be, so I was like her main support person.  The day after Christmas, while she was at work, a 36 y/o male resident hit her in the abdomen and sent her into preterm labor.  She remained on bedrest and was in a lot of pain for the duration of her pregnancy.  We frequented the hospital weekly and sometimes more for treatment of preterm labor for months.  The baby eventually was born at 37 1/2 weeks and after about 24 hours of labor, she had to have a C-section.  Mom and baby were okay to begin with, but 2 days after being discharged for hospital, Mom had to return with a wound infection and was in there for 5 days for IV antibiotic treatment.  I had to take the baby to the doctor several times during that time to have jaundice level checked, because she was slightly jaundiced when she was born.  Also, was taking care of newborn and taking her back and forth to hospital and staying there with Mom. Mom comes home and still needs much care and the baby gets sick - 2 days after Mom was home.  She spiked a fever of 102.4 suddenly and had spinal tap and blood cultures and IV's and the works and was admitted on IV antibiotics - turns out it is a urinary tract infection and even worse, her ureters do not close off, so she has to be on an antibiotic everyday until she is 2 years old and maybe she will grow out of it without surgery.  We will know more in a couple of weeks when we visit a major hospital 2 1/2 hrs away.

  In the midst of all that, while my granddaughter was hospitalized, my 17 y/o son had to have all four wisdom teeth surgically removed.

  Add to all that - stress of struggling financially, my house being a wreck, my increased stress level and much increased and too much running and doing without sleep, and there you have it.  I just got down in the dumps, when everything started settling down somewhat.

  So again, thanks for listening!!!!!!

  I do take an antidepressant, Cymbalta and normally it works very well.  I also use a hormone patch, because I had a total hysterectomy and managed to let myself run out of both for a few weeks:  Not Good, I know, but they are very expensive and I couldn't afford them at the time and I did not want to ask family for anymore money, as I have had to do that quite a bit over the last year due to waiting on disability and not working.

  Aside from all the bad stuff, I feel like this new grandbaby has really given me a lot to look forward to and I really enjoy having her here with us all the time.  I get to take care of her a lot when I want to, but her Mama does a good job of that, so I actually get to be grandma:  she just lives here.

  Sorry for this long post, but I wanted to explain why I got so bad.  I have had this IBS for 4 years now and even though it gets me down when I get so bad, I normally handle it fairly well considering - I guess I should say I have pretty much accepted it; however, when it gets really bad and my stress level gets high: I am sick and I do get depressed and then I get mad at myself for being depressed and not being able to fight it off.

  Okay, that was way too long, but thanks for listening.

  Hope everyone has a wonderful Easter.

Posted 3/23/2008 11:07 AM (GMT 0)
Floss Congratulations on the new grandbaby. I am so sorry to hear what happened to you daughter. thats horrible. I hope she gets feeling well too.  Yes after you explained all that, we can see what got you so down, not like having fibro and IBS dont get you down enough, you have this other stress to worry about. Vent all you want, it makes me feel better to know I have a place to come to. I had stayed away for many months, now I have come back, I was actually too sick to even come on line, or do anything, I was vomiting all the time.

But I feeel much better now, and I am glad to be back on line. Good luck to you, and HAppy Easter..... smurf ....

Posted 3/24/2008 1:01 AM (GMT 0)
Sheryl,

I got to the point to where I was too sick to come on line here too. Someone had actually suggested that maybe I shouldn't be on this site so much, because I was constantly thinking about my illness by doing so, which probably wasn't helping me any. Anyway, between the two, I stayed off for months, but this site actually helps me. It is one place that others feel my pain and emotional struggle that do go on everyday whether I am on this site or not. So, I am back.
Thanks for the nice reply.
Posted 3/24/2008 7:54 AM (GMT 0)

floss said...
Sheryl,

 Someone had actually suggested that maybe I shouldn't be on this site so much, because I was constantly thinking about my illness by doing so, which probably wasn't helping me any.

Oh, that's brilliant advice. confused   Let me guess who offered that gem - someone who has never experienced any gut problems, right?  As though, somehow, we will "forget" we have this illness if we just stop talking about it?  Argh.....

Just stick with us.  You're among friends.  And we actually do talk about other things besides poop on occasion. yeah

Posted 3/24/2008 9:07 AM (GMT 0)
Oh Floss, it's okay...I know my fiance sometimes wanders in here and says, "Hmm, on HealingWell again I see?" Just joshing me, but I do think others think spending too much time on here could be a bad thing. And I even agree with that. It depends on what kind of "place" you're in emotionally - I can definitely seeing needing to take some time away if you're finding yourself starting to obsess a little, etc. But as long as you're comfortable and being honest with yourself and with us, this is a great place to be. We are here for you to vent and give you suggestions and just listen. Sounds like you have been through an awful lot lately, and anyone would need support, even if we can only provide cyber-support!
Posted 3/24/2008 6:12 PM (GMT 0)
Your welcome Floss, I am so glad I came back, i forgot how much I missed it, and all the support I was getting, even if its cyber support, more support than I am getting anywhere else.  I just hope i dont get so sick again that I dont come back here. HW helps me to feel a little better. I hope your daughter is doing better, and you too....
Posted 3/25/2008 9:16 AM (GMT 0)
I have been doing better than I was, Thank you. My daughter got a clean bill of health at the doctor yesterday and the baby is doing great. I was just up with her feeding her and playing with her for a couple of hours. I just put her down at 4:30 am. I try to help my daughter out during the night especially, when I can. I worked 3rd shift for a long time and I am often up late anyway, but when I am sick, she has to do it. She does all the other feedings and stuff, unless I just want to. I wasn't feeling too well this morning, but I got to feeling better thank goodness, now it is just the normal everyday stuff. Today was the day to change my patch and usually on the day that is due, I guess it is starting to run out, because I usually start feeling worse until I can change it.

Easter Sunday was very good, except for the babies Daddy started up his old junk again (long story), so now my daughter is going to try to get full custody. She is going tomorrow to try and get temporary custody. I have never been through this kind of stuff, so I guess we will learn as we go. This should have been done to start with. Actually, she should have not given the baby his name to start with and then if he truely changed and proved himself she could have taken his name later.

Also, I got a form from disability to fill out all the jobs I have had for the past 15 years since I got sick. Wow, I had already done this one time, but this was my detailed stuff. I worked on it for 4 hours tonight and I am still now quite finished. I will be glad when this is all over and I am approved. For many, many reasons.

Gutsatrophe, you were exactly right!

Well, I am going to try and go to bed now, goodnight and hope everyone has a good day.
Posted 3/25/2008 4:16 PM (GMT 0)
Floss I am glad you are there to help your daughter.

Im glad she is feeling better too. She sound very blessed to have you as a mother. I hope get you need done, and feel better too.... smurf .....

Posted 3/25/2008 7:04 PM (GMT 0)
I am new here, but I am so glad I found this. I am 32, married and have 3 super "peeps" ages 11, 10 and 8 . After suffering with IBS symptoms for one year + I finally got diagnosed with it 2 months ago. It has taken a huge toll on me and my family. More so, my Husband. I was unable to continue working. I just recently went on a medical leave. I am hoping to go back in May. I have summers off anyways, so I really want to be better so I can go back before summer break. I am lucky my husband has a great job and wonderful insurance. It was never that I had to work, but wanted to work, so I am lucky that way. However, now we are pretty used to those paychecks and withut them, we have had to make some changes anyways. The stress level for me right now, is huge. I feel stress about not being able to work, I ma tired all the time, I rarely to do much of anything outside my own home, and I am emotional about everything. Things that used to not bother me, seem huge! I feel so bloated at times, I need to go and put on sweatpants. i have abdominal pain that goes all the way under my breasts. I live a small rural town where good informed doctors are hard to come by. My GP sent me to a specialist. He put me n 2 different meds. At first , it was way to much. Now, it is not enough. When take them for a extended period of time, I suffer from constipation. I also have side effects form the meds. I feel sick to my stomach, blurred vision, dizziness, and on and on! When I called the specialist about my side effects, he told me to go get my eyes checked for the blurred vison! I was blown away. I have never had vision problems, until this med that is. I am actually now, waiting for a call from my GP to see about another specialist. We have got to get the meds figured out before I can be on the road to feeling better. I feel very isolated with IBS. My husband doesn't truly understand what it is like. I am hoping you can all share your thoughts with me and maybe some insight on what works and doesn't work. I have changed my diet, and that helps some. But soem days, it doesn't seem to matter what I eat, it's just that I eat that causes me to be in the bathroom. It is frustrating. My mother who, is great and I talk with her everyday. She think I focus to much on IBS. WhICH, i THINK THERE IS OSME TRUTH TO THAT. But it's hard not to when everytime I leave the house, I am wondering if I will need the bathroom or not. I try to keep things as normal as possible for my kids. I still, have missed sledding, snowmobiling, church the night before Easter, and the lsit goes on. That upsets me. My kids are growing up so fast as it is. I hate having to miss out on anything they do! I was going to school for nursing ( RN) and working night shift up until about 3 years ago. It hit me, I was going to miss things that my kdis were doing and I didn't want to do that! So, I decided to put off school until they are older. Maybe even grown. I got a job where I am able to take them to school, and then pick them up again right after school. If they have a day off, so do I and I don't work summers. It is a wonderful thing. My husband and I built a new home 2 years ago, and things were almost perfect, and now I have IBS and I feel like I don't even know myself anymore. I hate to complain and be like poor me, becasue I know I need to find the strength to rise above this, and accept and deal with IBS. But it is so hard to do that!
Posted 3/25/2008 7:10 PM (GMT 0)
I have IBS and I know what your feeling. My husband is usually pretty good about this too. But, he does sick of it too! I Which always ends up stressing me more, and that leads to my IBS getting worse. i am just trying to accept, deal and rise above this IBS but it is very difficult. I have had to take

Posted 3/25/2008 7:41 PM (GMT 0)
Welcome to HW Roxanne, what are the meds the dr has you on?

Its a hard disease to cope with, but at least here your in good company with people who understand what you are going through.  My family doesnt understand, so I can understand that part of it. Hang in there..... smurf .....

Posted 3/25/2008 8:40 PM (GMT 0)
Thanks, It is good to hear from you. Thanks for replying. I just got back from picking my kids form school. That always make me smile, no mater how bad I am feeling due to the IBS.
I do have a great family. My mother and father live close by , and I I "vent" daily, if not more to my mom. BUT, Noone really gets what it is like. Someone always has a suggestion on what I should try. But, sometimes those things are much easier said than done. I do feel bad for my husband. Whcih is why I feel so stressed. I know with me working, there is more extra for things to do or buy. Now, with me not working it kinda makes me feel like a failure and like I let my husband down. I still keep my home very clean, neat and organized and cook and do the laundry. By the time bedtime rolls around, I usually have nothing left. But then are the days where the IBS makes is really tough to much of anything. I know I have so many steps in a day,therfore I need to pick and chose what it the most important to do that day. It is so unpredictable at times. I can feel really pretty good for a couple days, even a couple of weeks and then it hits again. I feel too darn young, to feel and act this old. My children and husband are beautiful and I try so hard every day to make things as normal as I can. I am a tough person, and have a very high pain tolerance, so I am able to manage at times doing things with the kids or around the house even if I am in pain and so bloated. I am on Hyoscyamine and Loperamide.
Posted 3/25/2008 9:15 PM (GMT 0)
Goodness Roxanne, your story sounds so familiar, it is almost like reading my own story. I feel for you, I truely do. I have had this for over 4 years now and unfortunately it hasn't gotten any better. It has changed some over time, but no better. My story is so long that I don't have time to write about it right now, but I will. It may be a good idea to start a new topic, I'm not sure. (Any suggestions on that from those of you who have been on here for sometime about starting a new thread or just continue on this one for that, because it will be lengthy). Anyway, I will try to do it later on tonight. It is already on here, but it will be way, way back months and months ago.

I understand about the bloating and having to wear jogging pants and such. I have like 3 different pants sizes in my closet the biggest I call my big girl clothes and I hate to have to wear them. I feel awful when I get like that and the pain gets even worse and it is already really bad.

Most of the time my family is very understanding, because they have seen it so many times and for so long. My Mother especially is very supportative and understanding, but even she occassionally gets frustrated with it and gets upset if I can't do certain things. Yes, my nerves get shot especially when my husband gets overwhelmed and ill and starts fussing about this and that. He is just venting (as I do sometimes as well ), but I still just easily feel guilty about my illness and not being able to provide financially as well and not being able to do things that I want to do and need to do. So, when he gets like that, usually I am already really sick and I guess that is part of the problem, but if not - I surely get stressed out and get sick everytime from the stress that I put on myself.

I am a nurse ,(although I am not giving nursing advice on this site, just simply telling my story and things that have happened to me), and I did have to go through school with my life basically put on hold during that time. Then I worked for 6 years as a nurse and loved it; although it is a very hard physically and mentally. In addition to being on call and having so much responsibility in the job. I still loved it though and miss it very much. Everytime we went to the hospital with my daughter, I saw all the people I use to work with and that makes dealing with my illness worse - knowing I will never be able to do this job anymore. Or at least more than likely not.

I understand about the fear of not having a bathroom nearby - traveling even short distances is the worse for me. My home is definately my comfort zone. Sometimes, I don't even know myself anymore either. I live in a rural area as well, but I have good doctors; although I had to do a lot of changing to get to where I am now and some thought I was crazy for sure. Some told me there was no such thing as IBS and Fibromyalgia and that I was a nurse, so I should know that. I was furious and terribly upset. There were times when I questioned my own sanity. Especially when I was in so much pain and so many things going on and every test was negative. It was truely awful.

Anyway, I wish you luck with finding a good specialist; although my primary doctor has helped me tremendously and that is who I see primarily now and only see the specialist every 4-6 mos now. My current doctors are very good and very understanding and I have been with them for sometime now.

I am glad you have a job where you have some time off to be with your kids; they do grow up fast! Hopefully they will get your meds straight; that is a big deal and the right meds really do help. It took a lot of trail and error for me - I was either very sensitive or didn't respond, but this was because my IBS is so difficult to treat slight changes can throw me for a severe loop and then sometimes I have to take large doses of meds. The doctors and I have figured out what works and what doesn't for the most part, but I still have to deal with the problems of diarrhea / constipation; mainly now I am C, but still have sudden urges of spasms / diarrhea and possible incontinence. That is really fun. Anyway, I will try to give some history of my illness if you would like to hear about it.
Posted 3/25/2008 9:45 PM (GMT 0)
I think we are all to young to be going through this, if I can get a job again, it needs to be wroked around the children. I feel very guilty. ANd not too many people tell me otherwise, as they just dont understand, when I am here i am not being judged, its a good place to vent, adn listen and help others too.
Posted 3/25/2008 10:29 PM (GMT 0)
Yes, today I feel like I could crawl out of my skin. I am in the process of TRYING to find a good specialist to get this somewhat under conrtol. I think sometimes my husband thinks it is going to happen overnight, and like I can control it. My GP hasn't a clue, and has pretty much said so. I am going through him to try to get in sooner. However, this afternoon I found out that the soonest I can get into to see a specialist is the end of April! I wanted to sit down and cry. I saw a specialist who, was very hard to understand. When I was having terrible side effects from one med ( My vision was blurred, I couldn't focus my eyes enough to even write a check out or dare drive! ) I called him about this, and he told me to go get my eyes checked! This was a known side effect and I had never had this trouble with eyes before taking this med. I was blown away that a doctor would even think to say this! I was also taking way to much medication. I was dizzy, felt sick to my stomach, terrible constipation ect. I know there will side effects, but I couldn't even drive while taking the amount of meds he has suggested. With kids, that just was not an option. So, I feel rather depleted right now about all of this. I have been told the meds I am on are good, but that I just need the correct dosage amounts. I also asked for something to just take the edge of slightly. I am a pretty strong person, but lately all of this is bringing me down & my moods and reactions to things are not what they used to be. I am pretty easy going, carefree and patient as the day is long. Or should I say, I usually or used to be this way :) I just can't imagine that it would be this hard to treat and just get in to see a doc that can help because he knows more about IBS. I am starting first thing in the morning to call around and see if I can get in any sooner than the end of April!
Posted 3/26/2008 4:52 AM (GMT 0)
Sheryl, you are right, we are all too young to be going through this. This condition is so debilitating especially to just be called a syndrome. It seems to me that as much pain and fatigue and gastro problems that it causes, that some sort of test ought to be ought there to detect it - that would actually come back positive. That use to drive me crazy, I just knew something was going to show up amongst all the tests that they did, but it never did. Later after I got in with the specialist I am seeing now, he did some tests to check on the incontinence and the pain and stuff and both of those were abnormal. My nerves in my abdomen are highly sensitive # 1. # 2 I have lost muscle tightness in my rectum due to a 3rd degree tear during childbirth. He has wanted to do an ultra-sound to see how bad it is on that, to see about doing surgery, but I am not having rectal surgery at this time - I have seen that first hand on several occassions and I don't want it right now.

Speaking of work, my IBS is so severe, both my doctors primary doctor and GI doctor will not let me work anymore and are backing me for disability, but it still takes forever. Especially since I am young and have an education. I have tried to work so many times since this all started and actually was able to do at one point for awhile, but then it got really, really bad again. I have been fired so many times it is not even funny and before this illness, I had never ever been fired in my life. I am a hard worker and I don't like being out of work and didn't use to be out much before this. But, the emotional trauma of trying to work in pain and bowel problems to boot - with the guilt of having to call in sick versus the emotional battle of knowing I have no other choice, If I am not in the bathroom about to literally pass out from the pain, I would be in the bed. I lived at the doctor's offices and had doctor notes, but it doesn't matter after so long. Then if you go out on medical leave and it expires for the family medical leave act and you are still sick, they have no choice but to replace you because they have to have someone in the slot to do the job. Anyway, my employers always hated to have to talk to me about my absences and then let me go because of it - because what few times I wasn't sick, they knew I was a hard worker, but they still terminated me. When I didn't resign because of it. The only one that was ugly to me was the employer I was working for when I actually got sick initially and they didn't believe me. They called me 2 and 3 times a week and once even ask me if it were really something elese and if I were having emotional problems. I went up there finally my mama drove me, because I couldn't even drive at the time and when I walked in up there, they didn't even know me I looked so bad and had lost so much weight. I looked awful. You should have seen the look on their faces when they realized who I was. They appologized and later that evening they called my husband and appologized to him and the lady told him she felt as low as an ant and that she truely didn't recognize me. That didn't stop them from firing me though shortly after. So, I just cannot deal with that emotional roller-coaster anymore. I can't physically do it anymore anyway.

On a happier note, I cooked supper tonight and took a plate to my husband at work and we spent his lunch break together talking and visiting. It felt good to do something like that, we don't have a lot of time together the way he works and with my illness. I can't remember the last time I took him supper though.

Roxanne, I did want to tell you that my primary doctor at first didn't know a whole lot more to do with my IBS when so many things weren't working - he actually told me that my IBS was so severe and so far out of his league it wasn't even funny, but after being hospitalized and in the ER pretty much weekly and more, he and I decided to try some things and treat the pain in addition, because my GI doctor will not treat my pain with pain meds, the pain is under much better control and I am not at the hospital all the time anymore. He always keeps a watch out for new things for me too and has actually called me when he ran across something new that he thought maybe I should give a try. He has helped me tremendously. He has helped me with lots of things and of course he is our family doctor and is very good with my children as well.

I hope you can get in sooner with a specialist and get a good one. Your primary doctor may feel more comfortable after you see the specialist, because they can sort of work together and you will be a big help to him as well by telling him what you learn and what works and what hasn't. Try not to get discouraged, it took me a long, long time to get some good help with 2 understanding doctors who know I am not crazy and know how debilitating this stuff can really be. Just keep searching that is what the people on this site told me to do and I did. Good Luck.
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