cactus
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posted
Looks like I'm not the only one with this problem...
I posted last week when the LLMD found blood in my urine and I was having bearable lower left quadrant pain... It wasn't too bad, so I scheduled the CT Scans for next week when I could find a babysitter.
Today the pain became completely unmanageable - can barely stand, it's bad. It's actually frightening. Radiating down my legs.
Called the hospital and they bumped my CT Scans up to tomorrow. I've spent so much time in the ER this year, I don't want to go back there tonight, so I'm trying to hang in till tomorrow.
Anyone have any ideas what this could be? I had my gallbladder out after Rocephin a few mos ago, so it's not that. I do have a history of endometriosis, and benign liver lesions, oh, and kidney stones, too (kinda feels that way).
Have Lyme, Babs and numerous other chronic infections, and I've been on Ketek, Malarone, Omnicef, Cymbalta, and Ambien - the pain right now is bad enough that I'm scared of taking my meds.
Thanks - I know you guys aren't docs, but I'm looking for support, and any thoughts you have on this would be great.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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cantgiveupyet
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hey, hang in there ok,
it could be many things, since each one of us presents with pain differently.
when i went to the ER around this time last year with the severe lower left pelvic pain, and lower right back pain...they gave me a CT scan with barium and injection and were looking for apedecitis.
It could be a cyst on your ovary, could be the lyme, hopefully tomorrow they will have some answers for you or atleast rule a bunch of stuff out.
last year i went to the ER about 12 times one week i went almost everyday and even got kicked out of one ER because 'nothing was wrong with me'
hang in there...and please keep us updated.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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cactus
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Thanks, Can't... Needed some reassurance.
And you've got me beat - 12 times to the ER in one week, ouch. I've been there a lot lately though - thinking I should get frequent flyer miles or something. Maybe own my very own bench by now...
For tonight, I'll hang out with my new best friend - the heating pad - and try not to think or feel until tomorrow, when I start drinking the yummy EZ CAT concoction.
Hope you're well today...
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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trueblue
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Cactus ~ I'm sorry you're going through this and in so much pain.
Gosh, it could be a cyst or kidney stone or anything. (kidney stone sure sounds possible)
Having your gallbladder out doesn't mean you won't get stones but I'm assuming the pain would be on the right. Who the heck knows, everything refers everywhere.
I hope the heating pad helps and you can get through the night somewhat comfortably.
Not being a doc or anything I would opt for necessary meds only. Personally I would consider the anti-depressant and sleep meds mnecessary... but that's just me. Maybe call the doc on the meds?
Hang in there and may tomorrow be the beginning of the end of this awful pain.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trails
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oh cactus! my endo buddy!
Sounds very much like a cyst or some other manifestation of this dreaded disease. (endo not lyme)
You still have both ovaries right?
where are you in your cycle? If mid cycle it points even more to ovarian cyst, but if not it does not rule it out.
If it is a cyst---there is nothing you can do anyhow except medicate and breathe thru the pain---it can be very scary though--the pain is sharp and knife like when it is at it's worst.
Do you have anyone that can rub your calves and feet? This is often enough distraction to get me thru to the next minute.
Could also be kidney stone. Which would mean a NOT fun ride either.
You will know soon enough----hang in there and tell them at the CT scan to get the results to the doc STAT!
pleeeeez let us know! trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
So very sorry you are in so much pain. My message may be too late.....hope you will find out your answer soon but I had a couple of things to add.....
My interstitial cystitis would get so bad that I thought I was going to die. I was sure I had a horrible UTI, especially with the pain radiating down my legs.
A couple of times it WAS an infection. The other times it was an IC flare and they can be gruesome. When I've staggered into my urologist's office, I think I actually passed out once from the pain.
The last couple of times the urologist dilated my bladder and then instilled heparin. I got almost immediate relief with the dilation. I was keeping in over two cups of urine. My bladder muscles were stuck in a cramp.
I hope it is something as simple as that. Am wishing you well with your tests! It's sometimes easier to bear the pain when we know what is causing it.
Sending big, soft hugs, Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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trueblue
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Cactus ~ How are you today. Update us when you can, ok?
I hope you're alright, so to speak.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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cactus
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Hi guys - I made it through the night! Now just drinking a delicious barium shake, and getting through today. Ow-weeeee.
True, I did exactly what you suggested - took my abx, and skipped everything else. Just couldn't down any other meds, and I haven't taken my supps today, but I'll pop some probiotics as soon as I'm home.
Trails - this sure feels like my old endo days. Oh, how quickly I'd forgotten how abdominal/pelvic pain takes over your whole body when it gets like this - doesn't your whole world shrink?
Yep, I've got both ovaries - and I've had a cyst rupture, but it was a while ago (maybe in '96? ...not fun)... No clue where I am in my cycle now, isn't that bad? I can't seem to tell now, post-hyst, and it hasn't been a huge issue lately, so I've slacked off on keeping track. Oops.
Janet, I love your description - gruesome is the word for this. I'm still wondering about IC, have a constant feeling of needing to pee, but nothing comes out - they ruled out UTI already, I think... My mom arrived last night (wimpy me, called her for help with toddler!) and suggested IC also - seems as plausible as anything else.
Thanks again, for all the support... Will keep you posted on everything!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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hope you have some good news or at least some answers now
let us know how it is going
good thing getting your mom in there!!!! take care of yourself!
jif
(ps--i too am having mild abdominal pain? ! off abx for now until the nurse practioner--that i trust is in town.am scared of SF ER )
Posts: 208 | From Santa Fe | Registered: May 2006
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trails
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not peeing and feeling like you always have to is a pretty good indicator of ureteral stuff or bladder. Are you going to have some blood work and urinalisis done too?
That might help give a clearer picture.
gooooood lUUUUUUUCKKKKKKK! trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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trueblue
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Oh yum, barium shake, ugh!
Hang in there and hopefully you'll have some answers soon.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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cantgiveupyet
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Yummy barium shake. Do they still give you two different flavors?
I prefered the banana one.
of course when i had mine a year ago, 32oz seemed like so much, now i can down that in no time!!
Good luck,
I also have IC, and that is no fun at all!
I agree get a urine test too to rule out infection.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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cactus
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Hi all, boy, that barium shake really hit the spot. Ick.
(No, Can't, no flavors - they told me to mix it with sprite, which I did, despite the sugar. Banana sounds much more appealing.)
Trails, Can't - LLMD did do a urine test last week - but no bloodwork. It was neg for a UTI, pos for blood. Ever feel like your body is a puzzle without a solution?! Hopefully will have answers soon...
They're going to fax my doc the results, and maybe then I'll finally stop whining about this... I'm gonna go cuddle up with the old heating pad again, and pretend I'm somewhere sunny with no ticks in sight.
Jif, I'm scared of the ER, too... Hope you're feeling better soon, so you can get back on your abx. Good to hear from you!
Hope you're feeling better, too, True.
Waiting for my SuperHero powers to surface... After all the radiation I've had in the past year, it's about time...
Sending huge hugs to everyone, and hoping you're all having a good one today, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Cactus, so sorry to hear about this! I am with you... the barium shake, eeeeyew. They mixed mine with Gatorade, but it tasted like they had been soaking dirty coins in it.
Laughing about your super-powers! I keep wishing the radiation would help kill the Lyme.
Sorry no answers, just hugs... it's hard with little kids at home, isn't it??
Posts: 220 | From central TX | Registered: Jun 2005
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trueblue
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I am keeping my fingers in my ears and humming in case anyone says "drink barium" to me.
No can do, it makes me so much sicker, I started a "just say no" to Barium campaign a few years ago. I was ok, with taking it in; the way out was the issue for me. Ugh!
How about the whole bunch of us start feeling better really soon, k?
Cactus if you get your super powers first can you fly around and fix everyone?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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I've had really bad (Like I need to go to the ER NOW) pelvic pain 4 times in my life (in addition to the monthly horrors of my period before Lyme took my periods away)
Here's what the causes were:
1. Pelvic pain radiating to back, very tender to touch, fever. PELVIC INFLAMMATORY DISEASE (PID)
2. Pelvic pain radiating to back, nausea, vomiting and near collapse: KIDNEY STONE
3.Pelvic pain that seemed like a kidney stone at first. Had bloating, radiating pains, sharp knife like pains when I stook up: OVARIAN CYST, Corpus Luteum Cyst. It took a whole menstrual cycle to resolve. Showed up on ultrasound. I spent a month flat out on the sofa taking codeine every 2 or 3 hours (4 hours was too long and let the pain get out of control)
4. After I started heavy duty Lyme treatment: Sudden extreme pelvic pain, so bad I could not move. I wanted to call an ambulance but knew I couldn't get to the door. I remembered reading about something like this on LymeNet. I took some codeine and sweated in out on the sofa. After an hour it subsided. I felt weak for a day or two. That was it. The pain went away and never came back. I stopped having menstrual cramps & ovarian pain after that day. After a few months my periods stopped. My LLMD says they'll come back but I am enjoying the break!
Hoping you find some answers soon. hats
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cactus
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All the pelvic pain buddies still hanging in there?
On my end, still waiting for test results, so I'm guessing it's not too bad, or they would've called by now - so I'm just hanging out & breathing. Pain's still there, but lessened up enough to make it bearable yesterday (maybe because after the iodine contrast I finally peed? just a guess)
Hats, I've never had PID, but have read about it - what a horrific experience for you. Cysts, endo, kidney and gall stones, though... Ugh. Thank you for telling me about your experiences with all this.
I've wondered often if some of the episodes without a definite cause might be Lyme. 'course, I chalk it all up to endo, if there's no other explanation forthcoming, usually... It's wonderful news to hear that you haven't had issues with it since the last one - maybe that part of the Lyme experience has been resolved for you. Crossing my fingers for you.
Put in my request for special keet-killing SuperPowers... Still waiting!
Thanks again, guys, for all the help and support on this!
Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Marnie
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Even with the gallbladder removed, you still can have stones in the common bile duct.
Lots of things can be causing the pain.
Are you moving your bowels every day? What color, consistency?
Are you good about taking lots of probiotics?
I think I'd give up on the Ketek.
The news about this abx. has not been good.
Ambien is also known to cause abd. pains...after awhile (not when one first starts to take it). It is rare, but can indeed happen.
Ambien is addicting. You know that, right? It might be kinda tough getting off.
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cactus
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Hi Marnie, thanks for your thoughts on this.
I stopped Ambien a few nights ago, after seeing you mention it on another thread about abdominal pain, so at least that's in the works. I was taking a sliver to a third of a tablet, but it's not worth it if it might cause this kind of pain. Thanks for the link on it.
I'm taking Culturelle probiotics, 3 - 6 times the dose on the bottle, depending on how many I get in each day.
Since the GB removal, yes, I move my bowels every day, many times - it's softer than ever before, but not diarrhea. I've assumed this to be a result of GB removal the end of June?
I didn't realize that one could still develop stones in the bile duct after GB removal - would these be new stones or stones that were already there, prior to GB removal? Surgeon said I had lots of scarring in the duct, so that sounds like a possibility, too.
Ketek - I've been concerned about it, and watching my liver functions/bloodwork. Everything was normal 2 weeks ago, but all the same - I've been on and off it for a year. Saw my LLMD last week, and she told me to finish up my Ketek & start on Zith. Haven't started Zith yet, but I'm supposed to do so tonight (nervous about it, with everything else going on)... My previous experiences with zith have been rough, but I'm much farther into treatment now, so hoping it won't be so bad.
LLMD did a UA last week, & mentioned checking for c. diff, yeast, and UTI - I think those have been ruled out.
If you have any other thoughts on this, I'd love to hear them!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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bettyg
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posted
Cactus, sorry to read all about your pain, etc.
CALL the MDs office telling them you are having a panic attack and you'd like to have the RESULT TODAY to ease your nerves! Mine works great with me since he knows I have this! Best wishes. Bettyg
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trueblue
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Cactus ~ How are you doing?
Any news, any better?
no thoughts just this
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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cactus
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Hi everyone,
I hope someone in this icky abdominal pain club has good news this weekend. How's everyone else?
Well, I just had to check and make sure the old equation "ABD Pain + ER = BAD news" still holds true for me.
It does.
Thanks, Betty & True, for thinking of me. I called the doc Thurs, but didn't hear anything back (my LLMD's out of town)... Pain intensified - ouch, ouch...
Ended up crawling into the ER Thurs night, and things went downhill from there. Despite my records, fluorescent arm bands, and many, many concerns about all my allergies to pain meds... What would the doc give me, but a derivative of morphine, to which I'm horribly allergic. Whoa, was that like going from the frying pan to the fire!!!
Anyhoo, home now, sortof recovering from the allergic reaction, and still in the same pain. Now I just have other stuff to think about also, so my mind's not totally consumed with the fact that I can't walk!
Did get results from my CT Scan from the ER doc - all normal. So still no answers on this end.
Thanks for checking up on me, True - how are you feeling? Your test go ok?
Hanging with the heating pad again, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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trails
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Oh NOOOO! I was going to post if I didnt hear from you soon. and this is not good news.
Now you have to wait a WHOLE weekend to find out what the heck is causing the pain and get RELIEF?
I have developed allergies to almost all pain meds too. I waited HOuRS in the ER last month for a shot of Demerol coz that is the ONLY thing I am not allergic to now, but they dont "carry it on the trauma floor." I swear they MADE the drug from chemical scraps it took them so long!
Does ibuprofen help at ALL?
Having "normal" Ct scan is not what you want right now, I know. was it COMPLETELY NORMAL>???? I mean if it was you might be the first one in history---they usually find SOMETHING. I am sorry it isnt a stone. I wished for a stone this summer when all my ureter woes began--woulda been SO SO SO much easier. Pretty funny when the BEST you can hope for is a nasty diagnosis huh?
I am sorry I have more questions than answers...I am so sorry this happening.
You are one tuff cookie! If you get bored and want distraction, be sure to join is in the chat room on saturday night--truey is a hoot there and everyone keeps me smiling even when I feel like crap! take care, hope the pain ends soon! trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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trails
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ih yeah--cactus--we got our shipment of fresh green chiles today from HATCH. Have to roast them this weekend---they smell devine even UNroasted.
do you think green chile might help? Posts: 1950 | From New Mexico | Registered: Sep 2001
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trueblue
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quote:Originally posted by cactus: Hi everyone,
I hope someone in this icky abdominal pain club has good news this weekend. How's everyone else?
Well, I just had to check and make sure the old equation "ABD Pain + ER = BAD news" still holds true for me.
It does.
Anyhoo, home now, sortof recovering from the allergic reaction, and still in the same pain. Now I just have other stuff to think about also, so my mind's not totally consumed with the fact that I can't walk!
Did get results from my CT Scan from the ER doc - all normal. So still no answers on this end.
Thanks for checking up on me, True - how are you feeling? Your test go ok?
Hanging with the heating pad again, Cactus
Oh, cactus, I'm so sorry about the ER and all the additional crap as if there wasn't enough.
Still no amswers on this end, fought with the doc's office and he's on vacation so never called with bloodwork results and got a trainee doc to give me an overview but he was clueless.
He said the ultrasound report wasn't ready. The US yesterday really hiked up the pain level considerably, she hit on every sore spot and made them worse and wouldn't tell me anything.
The Gastro/liver guy's office got the bloodwork and could get me in on a cancellation on tuesday. Tuesday is very far away.
Pain is somewhat less today but my head feels like it going to explode and my neck is stiff and everything aches on top of it.
I know what you've just gone through is much worse and I'm sorry to be whining.
Let's all wake up tomoorow with our super powers, ok? I hope you get some answers and relief soon.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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cantgiveupyet
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Cactus,
Im so sorry that you are still in sooo much pain...just hang in there!
Also, make sure that your dr gets a copy of the ER report.......showing the 'nothing' that they found.
I got a copy of mine a year later, when i was finally well enough to go to the hospital and retrieve it, and it showed a cyst with some fluid(could have been from ruptured cyst) and i was told that they found 'nothing'..
Sometimes if it isnt life threating in my experience with ER's they say it was 'nothing'
I really hope the pain dies down for you soon.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Cactus, I'm so sorry to hear about your rotten ER experience!! I swear those ER ducks are out to KILL us.
There are several of us in the "abdominal Pain Club" now, and I have lost track of who has done what. Seems like we all have pretty much the same symptoms and have had the same tests done though.
I think the GI doc is going to try to look into Crohn's and ulcerative colitis in my case. Don't know if that's been mentioned on your end...
Feel better soon!!! (((hugs)))
Posts: 220 | From central TX | Registered: Jun 2005
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Marnie
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The NC doc and the patient were not aware of this.
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trueblue
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Cactus ~ How are you doing today?
Hoping to hear good news soon.
Hang in there.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trails
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cactus--let us know how you are doing. thinking of ya!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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cactus
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Hi everyone - how's the abd pain club this week?
On this end, it was a little rough over the weekend, after the morphine experience, but it seems more tolerable now - even almost unnoticeable if I don't bend or reach too much. Seems worse in the evening, but as long as I'm careful, I've got some relief.
Trails, demerol's one of the only pain meds I can handle, too - weird, huh? I can manage a darvocet or ultracet, but they still make me itchy. Old ladies' pain meds, I know...
Can't, good thought - I'll get a copy of the report, definitely. My LLMD usually makes me copies at my appts, so that should be the one easy part of this whole experience. Ugh, I can't believe you had a cyst rupture & they didn't notice??!! Ouch. I've been there, too, and boy does it hurt.
TX & True, how are you guys? I haven't been around much - just didn't feel like turning on the computer. Is there anything new on your end? Any answers? Thinking of you, too.
LLMD just got back into town, so I'm waiting on a call back, will keep you posted.
Thanks so much for checking up on me - all of you have been lifesavers. Can't begin to say how much it's meant to know you're out there.
Still waiting on my superpowers, and now dreaming of green chile - yum! Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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trueblue
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Cactus ~ I'm glad to hear your at least getting a little relief.
Funny one of the few pain meds I can handle is plain Darvon. It's not very powerful but does calm things a bit and best of all doesn;t make me speed or itch all over.
Anyway, I'm just back from The gastro and will start a new thread. I am doing better than last week for sure. And answers are forthcoming, finally.
Hang in there, kiddo! Super powers and answers must surely be on their way.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
"Hello my fellow Lymies"' I came across The Abdominal Pain topic so I thought I would ask if any has info on a Fatty Liver/sluggish Gallbladder with inflamed intestines.I can't drink alcohol cause of my meds, so can't blame my fatty liver on that. Going in on Thurs for a HIDA with CKC.that should tell some more about what happening, but if you all could give some input, I sure would appreciate it. Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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