# Fed up with being sick



## 14152 (Feb 11, 2007)

Well, the title says it all (without really saying much of anything, of course â€" weâ€™re all fed up or else we wouldnâ€™t be posting in desperation on an IBS support board). I guess Iâ€™m just in need of a good rant â€" can I rant on this board? I feel like my headâ€™s about to explode. Ok â€" some back story. Iâ€™ve had (sometimes very severe) abdominal pain for about a year now. Went to my GP, he said it was stress and gave me some fiber pills. The pain didnâ€™t go away, so I got referred to a GI. The GI ran a dizzying array of tests, said â€œitâ€™s IBS-Câ€ despite the fact that constipation is a very rare occurrence for me (weâ€™re talking once a year) and sent me on my way. Tried probiotics â€" no dice, they actually created cramping and gas, which I did not have before. Ok, fine â€" Iâ€™d just learn to deal with it, but then other things started to go wrong. Now Iâ€™m tired all of the time and my hair is falling out. My joints hurt and about a week ago my fingers swelled up and started burning. My chest hurts when I breathe. Terrific. Went to another GP â€" thereâ€™s no way Iâ€™m going back to the first after he said that my severe abdominal pain was caused by â€œstressâ€ â€" who said autoimmune. She ran some blood work which came back pretty much normal (the ANA count was raised, but it wasnâ€™t high enough to be Lupus). Today sheâ€™s running the tests for inflammation again, so maybe Iâ€™ll get â€œluckyâ€ (thatâ€™s a perverse use of the word) and theyâ€™ll find something. Anyways â€" Iâ€™m having a hard time concentrating lately and experiencing â€œfits of agitation,â€ so I was referred to a psychologist. The psychologist asked me about these periods of agitation, so I told her that they usually start with me becoming very dizzy and â€œout of it,â€ and then I suddenly become very agitated and my muscles contract and sometimes I thrash around my head or arms and legs. She told me that what I was experiencing sounded like a seizureâ€¦delightfulâ€¦and asked me if I had seen a neurologist. So now I have appointments for a gastroenterologist, a rheumatologist, and a neurologist all set up, and no one knows what the H*** is going on with me. Iâ€™m starting to think that Iâ€™m just crazyâ€¦if thatâ€™s the case, Iâ€™ll take a lobotomy, please, because all of this is really quite unbearable. Iâ€™m doing badly in school (did I mention that I just turned fifteen two days ago?) because Iâ€™m either in pain or so out of it that I can barely see straight. My parents are convinced that itâ€™s all just â€œstressâ€ or â€œjust in your headâ€ â€" I donâ€™t know WHERE they got that idea, as no doctor to date save the first has said something like that.Iâ€™m starting to give up hopeâ€¦I just want to live again.So â€" rant over. If you read all of that, thanks. I'm going to go lay down and cry now.







M


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## 22811 (Mar 12, 2007)

Hi!I read your post and can relate. I'm not quite as extreme with the health issues as you are, but I can relate to the frustration of going from doctor to doctor and never really having anyone make you feel like they're going to help you. I noticed your post was made about a month ago. Have there been any changes? Has anything been found?


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## 17890 (Mar 11, 2007)

Don't give up hope, you are doing the right thing by seeing various doctors...hang in there, something will show up!! You are so young and have your whole life ahead of you, hang in there.


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## Jannybitt (Oct 13, 2006)

MEM;You can rant all you want on here. That's what we're here for!!! I'm sorry you're having such a difficult time, and I know tests are a pain in the a**!! as I've just went through a whole series. If you only have constipation once a year, you DO NOT have IBS-C! I hope that's the doctor you said you weren't going back to. If you are doing poorly in school, and are seeing a psychologist, you could talk to her about homebound instruction for awhile just until things are better under control and tests are taken care of. The school has to supply the teacher and they come to your house for 2 hours a day. My daughter had to do this when she was 12 for her mental illness and she did a great job with homebound. I will suggest that you sit down with your parents and tell them that you have to have them listen to what you are saying and take you seriously. When you do that, and it's in a neutral setting, they may be more apt to listen to you. Stress can make the symptoms worse, but they don't make the symptoms! Don't give up; try to talk to your parents; show them these posts if you have to. If you ever need to talk feel free to pm me anytime. Or just post here. We are here for you. You just have to take the action of getting through to your parents. Also, when you go to the dr's be prepared with a list of your symptoms. Write down everything. It makes it so much easier than trying to remember and they will think you are a mature young girl taking control of her health. Take care of yourself; hang in there and it will get better!


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## 14152 (Feb 11, 2007)

Thanks for the encouragement.I just don't know how I can go on like this...it's been a year and they haven't figured out what it is yet, and things are only getting worse...I can't stand living like this. I don't know what to do.







Jan, the doc who told me that I had IBS-C was the gastroenterologist. He asked me if I ever had D or C, and I said "Sometimes, maybe once or twice a year for each." So he told me I had IBS-C. I think that's just their default diagnosis when they don't really know what illness you have... I'm so worried that they'll never figure it out...maybe I'm just hallucinating all of this, I don't know...The idea about homebound instruction is an interesting one. I'll bring that up with my psych the next time I see her.Thanks







M


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## Jannybitt (Oct 13, 2006)

M;Just an extra here; if the psych writes a note to prescribe homebound instruction for a certain amount of time, the school must follow through with it!!


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## Guest (Mar 28, 2007)

MEM - whatever it is - it is NOT "just in your head" - these sound like pretty severe symptoms and need serious investigation and persistance on your part - to ensure you get a proper diagnoses - you sound a strong bod - so I wish you well. I'm sure once a doc gets to the bottom of all of this - they can work out an appropriate course of treatment(s) for you.I wish you well.Sue


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## Jannybitt (Oct 13, 2006)

How are things going with you? Did you talk to your parents?


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## 14152 (Feb 11, 2007)

Hello everyone - I haven't been around here in a while! Things are looking up on my end. They are now thinking that it is a combination of an autoimmune disorder and IBS or a food allergy. I've been prescribed a high dose of ibuprofen that seems to be helping my symptoms quite a bit (including the depression/mood swings, which is a bit wierd). I go to the rheumatologist on the 18th and the allergist the week after, so I should know a little more by then. Thanks for following up with me! MEM


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## Reta (Mar 10, 2007)

Mem, I understand your frustration. I was diagnosed with IBS almost 20 years ago. I come to the conclusion that I don't IBS but some other problem. My frustration is that once the doctors hang the IBS label on you they are very reluctant to change their minds. My problem is upper right quadrant pain, no bowel dysfunction, no gas, no bloating. I discussed this the GI doctor that had done my colonoscopy. He told me on 2 occasions that he suspected I Spincther of Oddi dysfunction, then he writes my PCP that he suspects IBS. He is no longer my doctor. I wrote him a letter telling what I thought of him. Then I complained to the hospital that he worked at and to my insurance company. The insurance company is the only one seemed interested. I finally think I have got my PCP to listen to me. At my last checkup my iron levels dropped significantly. I am at 19ug/ml down from 119 ug/ml in Ocotber 06. He is blaming my blood donations (platelets, plasma, and red blood cells) for depleting my iron levels. I contacted the local blood bank to get my blood work results sent to him. I just gave blood just a month before having blood work done for the PCP. The representative from the blood bank scoffed at his accusation, saying my iron levels have always been good. I am worried that his fear of internal bleeding is true. I didn't realized that it takes 2 oz of blood to produce black tarry stools. I go back in a couple of weeks. I get my blood work done before so we have something to look.I dread the day he retires, which might be soon. He is 75 and only has office hours 3 days a week, but he does 12 hour days. He loves intelligent people and will answer all my questions. No running out of the room. Thanks for listening, I think I just needed to vent.


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