Fatigue and IBS

Hi,

   I was curious if any of you got pretty bad fatigue about the time you got IBS?

Hmm, I don't know if I technically have IBS or not, but when my stomach starts acting up, yes, I get fatigued. I just don't want to do anything but sit and read or lay in bed. Even after I get it settled down I'm not much use for the rest of the day.

Way back when(2001) I was diagnosed with IBS. I started developing fatigue at the same time. Then I started getting a UTI every few months. I also started getting aches in my muscles and joints. They would come and go--not a constant thing, so I thought it was from working out too hard or from being out of shape or something. Then I started getting migraine headaches every few months and I developed a constant "brain fog". Finally just this year I was diagnosed with Lyme Disease.

I'm not saying that your fatigue is from Lyme Disease, since it could be a number of other things. It's just interesting that I was diagnosed with IBS, and now I realize that it was just a symptom of the larger disease of Lyme. I hope you tell your doctor of the fatigue. There is a difference between feeling tired and fatigue. Fatigue is having to drink a pot of coffee after work so that you will have the energy to make dinner, eat dinner, and possibly stay awake until 8pm or 9pm max.. There is something wrong with fatigue and it isn't difficult to define, at least not in my case.

alliebridge said...

Way back when(2001) I was diagnosed with IBS. I started developing fatigue at the same time. Then I started getting a UTI every few months. I also started getting aches in my muscles and joints. They would come and go--not a constant thing, so I thought it was from working out too hard or from being out of shape or something. Then I started getting migraine headaches every few months and I developed a constant "brain fog". Finally just this year I was diagnosed with Lyme Disease.

I'm not saying that your fatigue is from Lyme Disease, since it could be a number of other things. It's just interesting that I was diagnosed with IBS, and now I realize that it was just a symptom of the larger disease of Lyme. I hope you tell your doctor of the fatigue. There is a difference between feeling tired and fatigue. Fatigue is having to drink a pot of coffee after work so that you will have the energy to make dinner, eat dinner, and possibly stay awake until 8pm or 9pm max.. There is something wrong with fatigue and it isn't difficult to define, at least not in my case.

   What lab where you tested?  I believe I may have lyme. I have a ton of symptoms just not the joint pain.   Ive heard most labs give neg results. 

No offense alliebridge, but I think anybody who sends a sample to IGeneX, gets a positive result.
There are only a few labs that Lyme docs use, and I'd really like to see the percentage of positives that they have. I just wish they would develop more reliable testing for it, so that everyone, no matter what lab they used, could feel that they could trust the results.
I spent several years sorting this out, and am pretty certain I don't have Lyme. I think many of us have very similar symptoms, but it's not all from the same illness. Good luck to you.

Please lets not make this topic personal.  The problem with most illnesses is that they do overlap symptoms, I have that problem with my IBS/UC, or that symptoms from different disorders and diseases mimic each other.  I understand the frustration when you are dealing with a chronic illness however please remember that we are all suffering.  Please do not attack other members. 

-Thank you

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Hi my4bostons,
Did they treat you for the rash? I think I would freak out if I had that bullseye rash. From what I've seen, you need to receive the antibiotic ASAP after the beginning of that rash, or it's really hard to control.
I think some doctors don't respond enough to Lyme, and others ("LLMDs") over-respond to it.....making up the treatment as they go. I think conventional docs should be more open to more possibilities, and alternative docs should be more aware of the scientific studies and results that are out there.
With all the advances in medicine today, you would think that they could develop a reliable test for it.
Des is right.......there are a bunch of illnesses that have overlapping symptoms. But my4bostons......I surely hope they treated your bullseye rash with at least a month of Doxycycline.
Sorting through the various doctors and their various treatments can be very difficult. I had a friend who had similar symptoms as mine, and she travelled great distances to go to a "Lyme specialist", and was on heavy duty antibiotics for several years, and unbelieveable amounts of vitamins, supplements, etc., and just when he was getting ready to treat her "low thyroid" (which was normal on the lab test), she decided to stop going to him. I think some doctors can become very unethical when it comes to treating some of these "difficult-to-test-for" conditions.
I hope you can find something to help you feel better.

I agree with Cathy about getting it checked out anyway... also there is a Lyme forum on this site which I'm sure if you asked about the testing process, you will get lots of information. Everything that I have heard about bullseye rashes points to Lyme. I hope its not however the sooner you get treatment (goes for anything), the quicker you will feel better if that in fact is what is causing you to suffer.

Hi my4bostons,
I understand your reluctance. My reluctance to believe certain things is that some of these "Lyme Literate MDs" are doing some things that haven't been tested by reputable scientific studies. I think lots of people are told they have Lyme, and they don't, but are put on years and years of heavy duty antibiotics. BUT......your case is different. You had the rash, and then proceeded to get the symptoms of Lyme shortly thereafter. It's really a shame that you weren't treated immediately. But I imagine there are alot of people who don't know about the rash, and what it means. Don't punish yourself for not knowing at the time.
I really believe that some of these labs used by "Lyme Docs" produce alot of false positives. I had my Lyme tests run at BBI Clinical Labs in New Britain, CT. Maybe you've heard of them. I think they are very reliable.
It's a shame that your doctor is blowing you off. Less than a week's worth of antibiotic, a month after the rash, probably was too little too late. Can you TELL your doctor that you really want this test done? If he still doesn't help you, I'd find another doctor. If I were you, I'd probably try an infectious disease doctor and really stress the bullseye rash. I think it's real possible you have Lyme, and you need to start treating it soon. I'm sorry for your problems.

Hi my4bostons,
I sure don't want to steer you wrong. I can only tell you what I would do. What are you hearing about Labcorp and from whom? If you're hearing it on the Lyme boards, then I would take it with a grain of salt. I think it's a reputable lab. I got my testing done at BBI in Boston....and it was negative. I think alot of people on the Lyme forums have various illnesses......not all Lyme. But they want to put a face on their illness, and they really want to get a positive test result, so they can at least say "I have Lyme and that's why I feel so bad". So I'm wondering if they're badmouthing Labcorp, because they've gotten negative results? Do you understand what I'm saying?
I think it's true that our testing needs to be improved, but at some point, those of us who feel awful have to come to terms that it might NOT be Lyme, but something else with similar symptoms.
But in your case, I think it would be positive. That bullseye rash is pretty indicative. But.....I'm sure there are false negatives out there.
Do you live in a large area, where you could find a really good infectious disease doctor? I wouldn't just pick one out of the phone book.
What would be ideal is if you could find a good one, and then he could tell you where to get tested.
But that would be more money for you.....
It's a real toss-up my4bostons..........I think if you could get the money, I would go to the ID doc, and go from there. Surely he would know more about Lyme than your present doctor. It's unfortunate that she doesn't know anything about it.
If you do go to an ID doc......be sure to stress your bullseye rash.
I don't want to put anyone down on the Lyme forums. But I was on one for quite a while a few years ago, and it was almost like a cult. Everybody thought they had lyme, and everyone hated anyone who implied that it might be anything else. They were going to doctors who were known to treat Lyme, and those treatments were potentially harmful to people. They had all sorts of unsubstantiated theories about Lyme and the spirochete, and how it would hide in the body, and come back out, and all the crazy symptoms it would cause. People were doing very scary things, like giving themselves IV antibiotics while laying underwater in their bathtubs filled with scalding hot water, etc.
Don't get me wrong.........there is alot of lyme disease out there and very few doctors know much about it, but that's no reason to do foolish things.
So......I would first want to know if you're in a large metropolitan area where you might find a good infectious disease doctor. If not, I guess I would go ahead and get the Lyme test at Labcorp.
I hope I haven't confused you too much. Also, if you do get a negative result back, then I would start looking at some of the other chronic illnesses (like fibromyalgia), and trying to do some of the things for that, that others have found useful in controlling pain, fatigue, etc.

Post Edited (CathyA) : 4/24/2006 2:33:52 PM (GMT-6)

CathyA said...
One more question my4bostons.....when you were treated in the ER for mono......did they do a test or was it all based on symptoms?

thank you so much for taking time out to chat with me im sorry I have hijacked your original post.  You have def helped and I really agree you about some of the lyme posts.  Thats all im hearing on the other boards is that I need to get tested through ingenex or it will be def be neg.  So I feel like im throwing my money away going to labcorp. I live in a decent size area but have no idea what Dr. to go to.  Would I get a referal from my Dr? 

No I dont believe that I was tested for mono but I cant be sure.  I was really out of it at the time.  My mom had to peel me off the floor to take me to Dr in the first place. they were unaware of the rash I had previously.  I will ask her but I doubt she will remember either its been awhile.  again thanks for all your help its nice to get a different perspective.

i usually have ibs attacks in the evening and the next day i am completely and totally wiped out and exhausted.  i can't explain it but if just feel so tired and sort of weak no matter how much i eat or rest that day.  and it's not like my ibs attacks are really bad.  i mean they're really painful and anxiety producing but it's over in like, two or three (at the most) bathroom visits and within an hour its completely done.  but the next day you'd think that i had had the flu the day before or something.  crazy. 

Well Shucks my4bostons,
I feel really bad for you. I would definitely pursue the Lyme......whether by getting that lab test at Labcorp first, or seeing the infectious disease doctor.

I know that it's so very hard to get information on Lyme. It seems like people are either at one extreme or the other. I know the Lyme people talk all the time about how the spirochetes can morph into other things, hide deep in your muscle and come out later......but I just don't think that's true. What makes all this info so hard to sort out, is that all those crazy theories makes alot of sense. Like the herx reaction. Everybody keeps thinking something is helping them, if they're having a herx. Well, not all reactions to hardcore meds are herxes from the spirochetes dying. The theories are just crazy at times. And there's very little scientific backup for it.......unless it's done by "Lyme scientists"........who, according to a friend of mine who is a research scientist, do not use good science.
You asked if you're fixable........ Well, from what I've heard from alot of people, some of the initial damage from Lyme can be rather permanent. Be we just don't know where you are, if you do have Lyme.
But I don't want you to get too depressed. I've had a very difficult last 11 years, since I had a bad influenza, pneumonia, ear infections, then IBS and fibromylagia developed. But you can't assume you're always going to feel this bad. Yes, you might have to adjust your idea of how you planned on your life going....but that doesn't mean there can't still be some really good times ahead. You have to learn what things work for you......to help you feel better, to help you have more energy, to control your diarrhea, etc.
How are your periods? Did your pregnancies go well? How did you feel during them?
Have you been thinking about what you're going to do? Take the lab test? I know you're afraid it will be negative, and you've wasted the money.......but you just have to do it. Do they also do Western blot tests? Is your requisition just for the Elisa test?
It's just something you need to do my4bostons. Who knows.....maybe it will be positive, and you'll know for sure. Then you will have to decide how you want to proceed.
Was your BP low before this? Alot of people just have low BP. I had a friend who had real low BP and her doctor said to her "The good news is that you'll live to be 110. The bad news is you won't have any fun doing it". lol!
So did your thyroid tests come up okay?
Are your kids still young? I didn't get sick until they were 6 and 8.....thank heavens, or it would have been really hard taking care of them. And sometimes, we just have to keep looking for doctors who have something to offer us. Some doctors just don't seem to care.......but there are some out there who do, and who know to try different things to help us feel better.