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I wish I could offer help but can only offer hugs. <3 I'm sorry you're having so much trouble, it sounds just awful what you're going through. Hope you are able to find a clue or two.
Thanks guys. I’ve been reading all of your comment.
The last few weeks have been a little better. The elivel/Amitriptyline has been working to relieve my pts symptoms and a lot of the cronnic pain. So I can get up now and do things more normaly. It doesn’t have any bad side affects yet so far.
But the symptoms in question have not lessened. I had one bad attack and a couple minor ones, with days of intestinal discomfort.
I saw the Endochrine doctor, and he was really nice, but he was a bit insistant that he thinks the medicine is working, and that it is IBS. He upped my dosage a little, and I don’t dissagree with trying a bit higher. But he suggested I did see the gastrologist and check with him what he thinks. So I did.
I saw the Gastrologist A few days ago and went over everything with him. After explaining things, I asked about it being IBS. He was showing concern about the fact that the sypmtoms had not lessened. He does not think it is IBS, but is not ruling it out, because the pains I am having are more severe than what most people experience and I also don’t have a lot of the symptoms that come with it. Like food affecting the digestive system.
He could also see that I was not doing well in his office, and yeah, I was really feeling sick and having a hard time, and he noticed that my face was flushing from it. He is very concerned about these symptoms, but he wasn’t sure where to go next. He said he doesn’t want to stress my body out with tests that most likely will show up negative. So we decided on sticking to the higher dose of medication for a few more weeks to see if it has an affect on the symptoms, since the level of medication I was on was low to begin with, and it takes a few weeks to see a full affect from the medication.
He also is a lot more familier with this medication than the other doctor. So I go back in about two weeks. If no change has happened at all with the symptoms, than we will be looking at some other ideas. He doesn’t want me to be needlessly medicated.
So currently, I still have the same symptoms, but I am no longer stuck on the couch like I was before. So not solved, but doing a bit better.
I’ve got a few friends with Fibromyalgia. And varying degrees of it, so I’m a bit familier with it. It’s not been brought up, but probably becuase I am not showing a lot of symptoms and symptom patterns that usualy come with Fibromyalgia.
Even if it’s one tiny step at a time, at least there is a bit of progress…
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http://www.sarahjestin.com/feedbacklists.htmI hope they figure it out soon, Koi. Many of your symptoms sound like my husband’s (he has Crohn’s disease), though in a different location. In the grip of a flare up, he can end up bed ridden for days. Usually foods and stress are the triggers.
I’m so sorry you have to put up with this! Severe chronic pain is no fun at all. I deal with it every day but it’s my feet… If you ever need to cry it out I’ve got a shoulder I’ll lend you 😉 Hang in there! *gentle hugs*
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Thanks again guys :). It really has been nice to share what has been happening on here.
Yeah, that was the first thing they checked was my gall bladder.
So far the list of checked things is:
Gall stones, gall bladder function, parasites, anemia, the function of my esophagus, Stomach muscle(I was on a relaxent), my pancreas got a ct contrast scan, Thryroid function, as well as different blood tests I can’t remember what for.Do you know what your husbands first symptoms were? I have had this in my mind because I watched a friend of mine as symptoms started to come up and it took around a year and a half before she got diagnosed with Crohnse.
At the moment, I have not seen a link of increased pain to food. I know oatmeal and broccoli were really bad for her, but not right away. And I have not had problems with diarrhea as of yet. That was a symptom I know she had too.
Do you know what your husbands first symptoms were? I have had this in my mind because I watched a friend of mine as symptoms started to come up and it took around a year and a half before she got diagnosed with Crohnse.
At the moment, I have not seen a link of increased pain to food. I know oatmeal and broccoli were really bad for her, but not right away. And I have not had problems with diarrhea as of yet. That was a symptom I know she had too.
Crohn’s symptoms are kind of nasty so I don’t know if you want me to go into them. But, exhaustion and severe muscle pains were a big part of it – when we finally got referred to a gastro, he’d been bed ridden for nearly a month. It did take us almost a year to get diagnosed as well. The pain doesn’t increase, exactly, if he eats the wrong things (fiber is a HUGE no no). It’s just that if he’s in remission and eats something wrong, it can throw him in to a flare up sometimes.
Crohn’s and Colitis are largely the same though they take place in different parts of the intestinal system. And I don’t think Colitis is as likely to cause diarrhea.
I sincerely hope you don’t have something like that – it’s an ongoing struggle for us and the medications are horrendously expensive. For awhile my husband was on something very similar to chemo for it, developed an allergy, and now has an injection he has to self-administer every other week. The treatments are immune suppressants (since Crohn’s is basically your immune system getting confused and attacking your own body), so he gets sick all the time (currently has strep throat for the third time in three months!)
I appreciate knowing. At least it gives me something to pay attention too and compare. I know how terrible it was for my friend. She ended up in critical condition and hospitalized and it wasn’t till that that they diagnosed her with chrones. I’d much rather at least rule it out for sure then finding out in a terrible way.
I highly doubt it is, since I eat a lot of things with high fiber and currently have not had any bad reaction from it. The symptoms I have seem to come on randomly. But again, I do like knowing, thanks for sharing.
I wouldn’t rule it out entirely yet though 🙁 People have different trigger foods – it just happens to be fiber for a lot of people. Spicy foods, acidic foods, caffeine and fat can trigger it for other people.
A colonoscopy is the best way to diagnose. They aren’t fun, but they’ll give you a pretty quick picture of if it is or isn’t crohn’s or colitis…
Yeah, That is good for me to know. I’ve been keeping a log of my daily symptoms so I can keep track and test things when I have problems.
I am glad you are feeling a little better. It’s really horrible to have a Mystery Illness. If you haven’t already done so, check out Celiac Disease (gluten intolerance). Different people have different symptoms with Celiac Disease and it seems to me my sister’s may have been similar to yours. She was ill for years and had a lot of medical tests before she decided to try avoiding gluten to see what would happen and that solved her problems. Check into it. I hope you find a solution soon!
Well here is the update on things. I’ve been meaning to do this. I am still having some seariouse problems with no conclusions. I got on state insurence, I had a psychiatrist confirm that my symptoms are not ptsd or mental related(after another doctor pushed the idea). The next step is seeing another Gastrologist and probably doing a colonoscypy, but the referal took a long time and now I have to reaply for the insurence before making my next appointment.
I haven’t tried any diets yet. So far the symptems are the same, random, unpredictable. I’m fine one part of the day, in severe pain and nausia the next. A few attacks seriouse enough I almost blacked out again. Right now I have an icepack on my belly, it’s been nauseated and in pain all day. The one thing that HAS changed is my bm’s. That definately has diverted from what I was used to for the last 25 years of my life. Still no connection to food, it doesn’t seem to matter what I am eating, but I am keeping a log.
I am learning to work around it though. If I start having mild symptoms, I find a place to sit down. I’ve been more active too, lots of swimming, some beach time, hiking, and the biggest thing is I’m taking horsemanship lessons. It’s local and they are rescued horses, so it’s very affordable. my extra sales are going toword the lessons.
It’s really been so relaxing. Had my first horse accident, My horse tripped during canter, we both went down but it was very save. I even have it on video. Both of us were able to get up, he had no injuried aside fron a cut lip, and I got a very small amount of road rash and a deep tissue bruise, but that is it.
Also getting back itno painting. I’ll be open for commissions and I’ll make an art post soon.
Sorry about the smelling errors, and thanks guys. It really has been nice to have your support here.
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