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09-01-2011, 08:59 PM   #1501
allieinwonder
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Hey everyone! Its true, I've been super busy with my sisters. I've depleted ALL spoons, reserve and normal. My sisters are still hanging out but I had to give up and come in my room! Still have a fever, a low grade anyway. I'm feeling like utter crap actually. I'm glad I have NOTHING planned for tomorrow other than one homework assignment!

My doctor didn't contact me today. They have a four day weekend too, because of labor day, so I can't call them until Tuesday. My dad is so upset, he was almost yelling at me on the phone about it today. I told him about me considering going to the ER and he told me to contact him if I do. All I can say about all of this is...UGH!

Sunshine, I'm sorry the SBFT didn't show anything! After my SBFT came back normal my doctor mentioned lupus as well, but I haven't been tested for it. If my pill cam comes back normal I will probably go the autoimmune route and see if I can get tested for lupus as well. I really hope they figure out whats going on soon!
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09-02-2011, 12:18 AM   #1502
ShanBanana
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Hey Y'all- Greetings from Texas...

I know it's been a while since I've posted, but like I said, I am here every day- reading and keeping up with you guys.

Sunshine- I hope you are feeling better- I can't even imagine how you must feel being in all that pain. They had mis-diagnosed me with Celiac Disease, and had said they thought I might ave Addison's- turns out I had neither. It was after being gluten free for 6 months with no better results and my last upper endoscopy that Celiac was ruled out. Have you been tested for that? Just curious. Hope you feel better soon.

Allie- sorry you are still so sick and forced to be happy and chipper with your sorority when you feel so bad. I hope you are better- but I do agree with everyone else- go to the ER- don't wait. You are just prolonging the suffering. I hope they get the results from your pill cam soon.

Hi Cat- long time no talk to. I hope you are doing great. Has your hubby found a job yet? I know how too much stress can really affect you and make you feel sick. Hope you are still feeling like you are in remission and still feel pretty good. You had mentioned the Renaissance Faire- we have one here in Texas called Scarborough Faire and it in Waxhachie, TX. It is crazy- just a word of caution if you do go- I am sure you will have lots of fun, and they should have smoked turkey legs that you might be able to eat, but just to let you know, the people who dress up are crazy- they really think they are from the 16th century so they practice the ways of those people (example- no deodorant, no toothpaste, no soap). Don't get too close and inhale, those women don't shave their pits- THEY STINK. No joke.

As for me, I do really well these days as long as I don't eat any food. No solid food- I feel OK. If I try to eat anything, baked potato, bagel, waffle, chicken salad- doesn't matter. I get violently ill and start the stupid vomiting thing again. It is really weird- I literally break out in a sweat and feel like I am going to pass out then I get really nauseous. It sucks!!

I also got a question- something I have not asked any of you about, but maybe the all knowing Cat may know- what the heck is wrong with my skin??? I have noticed that gradually, the skin on my face is looking more and more dirty. It literally looks like I have dirt on my face. I have these tiny little brown freckles all over my face- really looks like dirt. And no make-up will cover it up. I am only 42- I really don't think I am old enough for liver spots. Does anybody know??

Thanks Y'all. Love ya!!!
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09-02-2011, 09:08 AM   #1503
Mayflower537
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That's weird, Shan, about your face. I remember Cat talking about skin darkening with Addison's disease, but I don't know if what you describe is how it presents specifically. You could google it or something and probably find a lot more information. She was just talking about that actually, b/c Addison's came up within the last day.
09-02-2011, 09:33 AM   #1504
allieinwonder
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I am having the same weird issue Shan! Not just on my face, but all over. All these tiny freckles just came out of nowhere. O.o I've been just brushing it off since I have so much going on, but now I'm wondering if its actually being caused by something!
09-02-2011, 09:48 AM   #1505
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Hey Shan, glad to hear from you! With regards to the skin darkening, with Addison's I believe it can be patchy or all-over darkening of the skin that looks tan, like a suntan. If you picture president Kennedy, he looked so tan all the time - it wasn't an actual tan though, he had Addison's! It doesn't sound to me like that's quite what your skin is doing though. The only other illness I can think of that can affect the skin of the face like that is Lupus. I don't know a lot about it, but I do know that Lupus can cause what's called a "butterfly rash" on the face. I googled it and found a link with some photos. Do these look like what you've got going on?
http://cure4lupus.org/store/index.ph...=187&chapter=1
I hope it's not Lupus, but I do hope you get some answers soon! You mentioned no solid foods - I hope that means you're on a liquid diet (boost/ensure) so that you're still getting some calories and nutrients?

Allie, glad to hear you can rest most of the day, and I hope your GI gets back to you right away on Tuesday! I'm also glad to hear that your dad is willing to take you to the ER if need be. I hope the rest helps you feel better and of course I hope you get those pill cam results back ASAP! You've been waiting (and suffering) wayyy too long now!

Shan, thanks for asking how I'm doing - still well, yes I still feel like I'm near remission. I don't really think I'm quite in remission - I still have d a few times a week, I pass mucus about once per week, and I have ocassional cramping. If I eat the wrong thing then I feel crappy for a few days. But other than that, I feel pretty great! Definitely can't complain. No, hubby hasn't gotten a job yet - but he has an interview today, although it's for a part-time job, not full-time, so I've got mixed feelings about that. And, ew about the not shaving or bathing renaissance fair people! I am somewhat prepared for being around stinky costumed people though. My dad is a Civil War re-enactor, and those guys don't use deodorant or wash their uniforms or anything like that either. So I'm a bit used to that kind of thing! And, hubby says we definitely don't have to stay at the fair the whole day, so as soon as I get bored or tired we will leave.

On that note, I probably won't be around the forum much for the next 5 days or so - I have a lot planned over the long weekend, and I took off a few extra days since Wednesday is hubby's & my wedding anniversary. 9 years! So anyway, I won't be around as much. But I'll check in as often as I can. Have a good long weekend, everyone! I hope your tummies allow everyone to have some fun!
09-02-2011, 10:33 AM   #1506
Mayflower537
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Happy Anniversary, Cat! Have a great long weekend.

xx
May
09-02-2011, 05:23 PM   #1507
dahlfacepoet
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Hi all! I was doing pretty well for a couple days, but now I'm back to pain. I've started to experience constipation now. This is just awful. My joints hurt, my skin is super sensitive and I get rashes all the time now. I've been eating better, but it's still a struggle.
My GI called and said the biopsies he took looked "okay". I don't know what that means, but I assume "okay" means normal. Though I say I'm doing okay all the time, when really I'm not.
I have my Pill Cam on the 13th, my doc was pretty confident that he'll see something then, since the spots he took my biopsies from were the farthest he could see. Hopefully I'll get a diagnosis.
Is it possible to get a diagnosis with CD with normal biopsies?
I still have to get some paperwork done, which I'll do on Tuesday.
I'm going to put together a vent to post, because it's chile roasting season here, and the smell just drives me wild!
Anyone have plans for the weekend?
09-02-2011, 05:32 PM   #1508
SunshineSmile
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Cat, happy anniversary!!

Shan, they thought I had Celiac but when I did the gluten free diet it got worse, so not really sure what the duodenal inflammation is from.

Dahlface, Good luck with the pill cam, If your doctor seems confident with that then you should be feeling very happy that you might be able to get treated soon! By the way I hope the pain you are feeling lightens up a little for you.

As for me, I have an appointment for the mayo clinic now! It's on November 17th! But if the doctor would call the mayo clinic I could get in sooner, but they are being really rude and not even trying to help. But the lady at the mayo clinic said that if I call everyday they may have a cancellation and I can get in sooner than November 17th. That's a pretty good wait time though I think. It could of been a lot farther out than November. And I'm pretty anxious to get my blood work results back that I did yesterday. Maybe something will show up with it.

I hope everyone has a safe and tummy friendly weekend!!!
09-02-2011, 07:21 PM   #1509
StarGirrrrl
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Sunshine, glad you have an appointment, and even better a shot at getting seen sooner!

Dahl, yes CD can be dx from Pill Cam images only. There are 2 members on here who had all normal tests, then did a Pill Cam, and were diagnosed with CD.
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
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2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
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Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
09-03-2011, 12:19 AM   #1510
ShanBanana
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Howdy Y'all

Hi Cat- Happy Anniversary!!! Hope you have fun at the Ren-Faire. As far as my freckled face- it doesn't look anything like the pics you sent me. Thanks. I am sure I don't have Lupus- my face just looks dirty. Even though I am a red-head, I have olive colored skin and have never had freckles, so I really don't know this is. I have tried foundation, powder, mineral makeup- nothing covers it. It just looks like a bunch of clusters of these little brown freckles that when you look at me from a distance, I look like I have been playing in a dirt pile. I am frustrated. Don't know what is causing it but it looks ugly!! As far as my vomiting issue, I haven't really been eating at all. Good news is, I have lost a total of 25 pounds since May 2010. Cool- I guess. I look pretty good- have lost two jeans sizes. I just don't get hungry so I don't eat at all, and when I try I get pretty nauseous. But today was a good day- I actually had a tuna sandwich, chips, milk shake, and a cinnamon roll. So I guess when I can eat, I kinda make up for all the times that I don't.

Allie- not sure if we have the same freckle issue but it kinda sounds like we could. Like you said, mine just showed up one day. My friend was like, what is on your face? Then she licked her finger and tried to wipe my face-EEEWWWW. It was gross, but funny. I don't know but I don't like it!

Hope all you other young-uns are doing well. Bye for now.
09-03-2011, 12:28 AM   #1511
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Sunshine...it is very true that if your doc would call them they will get you in sooner ! I originally made Gab's appt. myself, and then her doc was nice enough to call herself and had the appt moved up a month sooner ! The way I found out that this happened is that the doctor at the Mayo clinic called me himself to let me know! Seriously, bug your current GI to death to call the Mayo clinic on your behalf and speak to them...it WILL make a difference !
Man o Man, it's so worth the effort !
I hope and pray that they get you in sooner...you don't need to sit and wait in pain until November !
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09-03-2011, 12:16 PM   #1512
SunshineSmile
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Wow! That's a big difference in appointment time! Everytime I call the doctors office they are really rude to me, and all i am is very nice to them... the nurse keeps saying that they've never had to call the mayo clinic to make an appointment before. I'm like can you please just keep trying. I need help! It's been a week now since I've been ill. Now I just have stuffy head, cough, and sometimes my ear feels stuffy in my right ear. kinda weird, but annoying at the most. Stomach is doing better, just I feel exhausted and drained from being sick all week and now having a stuffy head. Never been sick for this long. Hopefully my doctors office will call the mayo clinic, I don't know how to make them call them, I feel like they keep saying they are calling but they aren't because my mom asked the mayo clinic if they've gotten a call from them and they said they haven't, but the doctors office said they've called twice... so something's not right. and I'm getting upset because I just need help and I know I'm not the only one who needs help but it's just a simple phone call really.
09-05-2011, 01:35 AM   #1513
Dayz
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Hi Everyone!

I wanted to check in to see how everyone is doing.

Cat I was so happy to hear that you are in remission I hope this lasts a VERY long time for you and that way you can get a break from all of this. I have missed talking to everyone and I have been reading all of our new members stories and keeping up with those as well.

Allie I am so upset you havent gotten your results : ( I have been checking in to see if anything has shown up. I hope you get those soon for both you and your sister.

Sunshine, I have heard many great things about Mayo and that they do the million dollar work up. I hope they do and then some! They need to figure out what is going on.

Carrie, I have been diagnosed with fibro as well as somatization disorder and the medication for both is the same, antidepressants. Fibro, from what I have read definitly can cause IBS symptoms sometimes even severe. I would definitly try some medication to see if it helps.
09-05-2011, 08:20 AM   #1514
StarGirrrrl
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Dayz, nice to see you around, how are you doing these days?

Well the brief cold I had last week has turned into a nightmare. Severe sinus pain on my left hand side of face, jaw and neck. Can't seem to shift it with decongestants so think I will finally go to GP tomorrow and insist I need something Must be an infection to cause this and I will tell them so lol.
09-05-2011, 11:50 AM   #1515
Carrie630
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Hi Dayz! I'm on anti depressant medication already, but it's for bipolar disorder so isn't the same stuff as for fibro. I'd like to get to a point where I can wean off my current meds so I can try something new. My rheumy won't give me anything else unless I go off those meds.
09-05-2011, 05:54 PM   #1516
allieinwonder
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Dayz, that's interesting that Fibro can cause IBS symptoms. And yeah, I'm frustrated too. I'm calling the GI's office tomorrow to remind them that I need those results, and see what they suggest to do in the meantime. I haven't had a solid BM in months, and going 12 times a day is really frustrating...if I didn't have tramadol I would have been in the ER a LONG time ago, its the only thing getting me through each day.

Star, that infection sounds awful! I really hope that clears up soon and that your GP can help you with it.

I hope everyone had a good labor day weekend!
09-05-2011, 06:48 PM   #1517
Carrie630
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I've really been slacking on the carafate, and I can tell. I wish it wasn't such a pain in the butt to take. Fibro, man, I swear it causes every symptom under the sun.

Allie, I hope the GI has any kind of update for you tomorrow.
09-06-2011, 12:21 AM   #1518
Dayz
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Hi Starr: I am so sorry you have a cold : ( how is your stomach? I hope it is backing off a little so you can recover from your cold pronto!
I just started my last year in college and am due to graduate May 19th 2012. I have been really busy with school and planning my graduation party and it has helped keep my mind off of all of this. Physically I feel great but mentally is another story I have frequent nightmares about everything and I just don't feel right. Even though my life seems perfect I just cant seem to shake off this unexplained fear. Like I am constantly paranoid about getting into a car accident or getting sick again or even that I wont complete my work and graduate on time. I am seeing a psychologist for all of that but it has been a roller coaster ride all this summer. Depression and Fibro Suck!
Allie: I hope you get those results! I cant believe they have taken so long to give that back to you. They really need to get with on the chrons wagon and realize that you are in pain and you have been for a year. It makes me mad that they did that to you If I was in Germany I would have kicked some butt!

Carrie: Yes Fibro is a beast. It can even cause hemorrhoids and yeast infections...both of which I have had. I am glad you rheumy believes in it because many doctors do not even acknowledge it is a real disorder. Many people have told me that somatization disorder and Fibro are not the same and that somatization disorder is psychological whereas Fibro has to do with your nerve and muscles and the way your brain perceives pain. I am pretty sure I have one of the two and I also am a hypochondriac, since I was a child, so now I go through the joys of pain and then worry and then more pain. But with the medicine I have been taking, physically, I feel good and I am on my 36th day of the P90X workout. I would have never done that two months ago. I just want to let you know that it can and will get better for you! If you have any questions or just went to vent send me a PM, I will be more than happy to reply : )
09-06-2011, 08:05 AM   #1519
Carrie630
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I have a hard time accepting fibro as a valid diagnosis. I do believe it's a real disorder in a way, which is to say: I believe it exists, but its hard for me to believe it exists on its own. There's no definitive test for it which, to me, means the doctor should not stop looking just because they dx'd fibro. My whole body feels like it's falling apart, I dunno.

My GI and my rheumy both seem to accept fibro as valid.
09-06-2011, 11:07 AM   #1520
StarGirrrrl
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Well I got nowhere with GP, he was just awful Said it was flu (what flu makes the left side of my face, ear, neck even teeth hurt and swell, and now spreading to right side), ignored the fact that I am under Hospital for long term health problems, and seemed to be going to give me anti-biotics, until he saw I hadn't had any for a few years, which obviously decided him no matter what I have I will recover from!

God almighty, do I have a sign on my head which states "Drs, do not help uner any circumstances"?

I have so much to do this week, and 2 Hospital appointments next week which I CANNOT CHANGE, but I am feeling so ill and in so much facial/ear pain and the headache I can't begin to even describe. I am eating nothing, to the point of no BM's since there is nothing being put in there, feeling very sick and water is the only thing that doesn't make the sickness worse.

Told me to go back by Friday if get worse, how helpful, how am I to do the stuff I have to do this week then???? Oh and carry on with the painkillers which aren't working. Who's betting I end up back on Friday but can't see anyone else besides that idiot.

I just give up, I am not even going to try and get better anymore, it is impossible, I have no energy left Time to crawl into bed and just stay there for a few years. I can't take this anymore.
09-06-2011, 12:01 PM   #1521
allieinwonder
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Oh star. I don't even know what to say. This whole situation seems so frustrating. You seem so ill...have you thought about A&E? I know with how I am feeling, and how my doctors are treating me, I have thought about the ER. If you get any worse you should go. You don't want an infection to get into your bloodstream..that is really bad news!

Dayz and Carrie..the fibro thing is an interesting subject. I've always associated fibro with IBS, because they seem to both be catch all's because there is no specific test for it. But then when you think about fibro in another light, it seems to be an autoimmune illness that really isn't understood yet. It makes me wonder if I should bring up fibro with my doctors..I have issues all over my body, not just my digestive system. Which is another reason why my last GI suggested Lupus, and why I'm going to get tested for that as well. I don't consider myself a hypochondriac,and my husband put it best why...something is seriously wrong, this is not IBS, and I just want to figure out what so that it doesn't shorten my life.

Today is kind of a chill day for me. It wasn't suppose to, but a meeting got canceled and I am not feeling well at all! I'm currently in bed, heating pad on my belly, hoping my meds will kick in soon. I'm frustrated on how often I'm having to use tramadol now. I pretty much can't live properly without it, and even on it I'm going 4-8 times a day, when it used to make it where I couldn't go for days. Very frustrating! I've been up for 3 hours now and I've gone 4 times, all covered in dark yellow mucous. I know you are not suppose to rely on this stuff...and I feel really guilty..I'm not addicted, I just get in so much pain that I take it. Do any of you have this struggle with pain meds? I hate it.
09-06-2011, 12:08 PM   #1522
Carrie630
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Allie, I don't suppose the GI called or anything?? I'm taking my tramadol more lately because the pain is just ridiculous. I'm still trying very hard not to take my entire daily dose which can be 1-2 tablets every 4-6 hours. I don't think I've had more than 6 in any given day.
09-06-2011, 01:01 PM   #1523
allieinwonder
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Yeah, the GI didn't call, and because of the time difference i wasn't out of bed fast enough to call myself.

I'm prescribed 4 a day as needed, and I'm on the 50mg, which lasts about 6-8 hours. I usually take anywhere from 1 - 3 a day, and I usually overlap them. When I asked my GI what else I could do for the pain, he just gave me more tramadol, saying that's all I can do for now. Someone on facebook posted a pain killer chart today, and tramadol is one of the weakest prescribed pain killers. I've done really well on it the past year, but I know its the only reason I get through being this sick with no treatment...

My prescription stops mid-october, so if I don't get something figured out soon I will not have any more tramadol to keep me going. I'm really hoping my GI gets to me soon. THIS IS RIDICULOUS!
09-06-2011, 01:30 PM   #1524
Mayflower537
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Well I got nowhere with GP, he was just awful Said it was flu (what flu makes the left side of my face, ear, neck even teeth hurt and swell, and now spreading to right side), ignored the fact that I am under Hospital for long term health problems, and seemed to be going to give me anti-biotics, until he saw I hadn't had any for a few years, which obviously decided him no matter what I have I will recover from!

God almighty, do I have a sign on my head which states "Drs, do not help uner any circumstances"?

I have so much to do this week, and 2 Hospital appointments next week which I CANNOT CHANGE, but I am feeling so ill and in so much facial/ear pain and the headache I can't begin to even describe. I am eating nothing, to the point of no BM's since there is nothing being put in there, feeling very sick and water is the only thing that doesn't make the sickness worse.

Told me to go back by Friday if get worse, how helpful, how am I to do the stuff I have to do this week then???? Oh and carry on with the painkillers which aren't working. Who's betting I end up back on Friday but can't see anyone else besides that idiot.

I just give up, I am not even going to try and get better anymore, it is impossible, I have no energy left Time to crawl into bed and just stay there for a few years. I can't take this anymore.
He didn't test you for the flu before saying that this was the cause?? Anytime I have thought I had the flu, they tested for it before telling me it wasn't it. So he was going to treat a virus with antibiotics? Is that what you are saying? What a quack.

Please don't give up! We are all here for you. Remember that.
09-06-2011, 01:37 PM   #1525
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I'm not pretending to be a doctor or pharmacist, but tramadol is clinically acceptable at up to 100mg per dose not to exceed 400mg in 24hrs. If you need quick pain relief, perhaps you can think about asking your physician if you can up the dose for say a couple days, then back down. Maybe your pain just got ahead of the medication? It's harder to tame down if that's what happened. ANother thought is you may have developed a tolerance. The next stronger opiate up from tramadol would be vicotin, then up to percocet.

I take tramadol too. It works for lower grade pain for me. But it hits a ceiling, then I take dilaudid which is essentially synthetic morphine. I think when we suffer from pain as often as we do with IBD, our pain sensors develop a higher tolerance. What we think feels mild to moderate perhaps to a "normal person" might be moderate to severe.

To me, it sounds like you might need a bump up (higher dose or more power) in pain relief.
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09-06-2011, 01:46 PM   #1526
Carrie630
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When I told my rheumy it wasn't enough, she also just upped my prescription. I have the 50mg pills as well. I don't expect to be able to get a better painkiller out of any of my doctors. I'm not allowed NSAIDs right now so all of my migraine medication is sitting gathering dust. that helps in conjunction with the tramadol for me, but I'm never pain-free. except for those moments I'm getting a procedure that involves dilaudid like my scopes. it takes a some hours past the procedure before the pain really starts to come back.
09-06-2011, 01:57 PM   #1527
allieinwonder
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Thanks guys for the suggestions. I do take two at a time when it spikes, and I have heard from several others and my GI that that is perfectly fine. I agree Regular Joe, my pain tolerance has gone up a lot! I have broken bones since I have gotten sick and thought nothing of it. I think at this point I'm fine with the dosage I'm at, I just hate taking it. I would much rather take tylenol or advil, but like Dayz said, NSAID's are a no no, and tylenol doesn't touch my pain...I only use it for fever reduction. I know once I get on the right diagnosis and treatment plan this will get a whole heck of a lot better!
09-07-2011, 08:44 AM   #1528
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Just stopping by to wish everyone a good tummy day!
09-07-2011, 10:35 AM   #1529
Mayflower537
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Join Date: Apr 2010
Location: Charleston, South Carolina

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I have a hard time accepting fibro as a valid diagnosis. I do believe it's a real disorder in a way, which is to say: I believe it exists, but its hard for me to believe it exists on its own. There's no definitive test for it which, to me, means the doctor should not stop looking just because they dx'd fibro. My whole body feels like it's falling apart, I dunno.

My GI and my rheumy both seem to accept fibro as valid.
My mother in law was dxed for years with fibromyalgia. Then some doctor in the last couple of years checked out her back and it turns out she had a bunch of discs that were all messed up, which was the root cause of all of her pain. I think it is kind of like IBS, in that it is a "we don't really know what is wrong with you" kind of functional disorder. Someone on here called both of them "wastebasket" diagnoses. I guess it's where they file the people that they don't know what to do with.
09-07-2011, 10:42 AM   #1530
Carrie630
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Join Date: May 2011
Location: Ohio

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Mayflower - my pain has always been blown off since I was about 14. I did have a bad disk that I had to have surgery on (just a few years ago - in my mid 30s!). My chiropractor of all people was the one who listened to me and got me an mri which led to surgery. It's hard to deal with getting blown off all the time.
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