Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
I posted this in the kidney stone dept but not enough ppl there. As a CP patient and member of this forum, I figured I'd try here since besides my RSD, my next pain problem is chronic stones. It's different in that I updated this to include my appt today and the odd symptoms.
I have RSD but right now I'm being tortured by kidney stones. I'm 44, have had stones (small, not very painful ones) for 20 years. 3 months ago I was taken by ambulance to ER b/c I thought I was dying! Turned out to be a stone and I passed it within minutes of being there, or it passed into bladder.
Thing is, I've never seen one of my stones as I pass them usually at home and rarely seek doctor assistance. I've got meds for my RSD pain and anti nausea meds, so imagine my shock when they told me 3 months ago I had been passing multiple stones at same time on right side.
I figured I was okay for awhile. I travel a lot for work and was supposed to leave for Cancun,Mexico Tuesday. But 10 days ago I got ANOTHER stone so bad I needed the ER. They said it was about 5mm and would pass, gave me Flomax and toradol and I already had other pain meds. In fact, the pain meds they gave me in my IV were opiods and they didn't do a THING but this Toradol was a Godsend. I stopped vomiting and was able to calm down a bit.
Anyway, I got terrible diarrhea the next day and was sure I'd passed the stone, too. I was okay by Thursday, and drove my son (4) to visit family who live 7 hours away. On the way, it started moving. I stopped at a hotel and thanked God that my son fell asleep and I went through a hellish night, just grateful they sent toradol if I needed it. It beats morphine any day!
So I get to cousin's house and I'm sick again. Not BAD sick, just, tired, low grade fever, pain, etc. Not the deathly pain I'd felt before ER though. We left early from my cousin's b/c I wanted to see my doc on Monday. He couldn't see me till 7pm and I had a 5am flight Tuesday. I ended up calling and canceling it all (praying I get deposit back b/c I'm free-lancing) so I was already sad.
The Toradol works well but shouldn't be taken more than 5 days. I went to the ER again b/c the nurse at my Family doc's said to. Wanting to see if stone had moved I went, but the doctor there was very weird. All talk, no answering questions- lots of machismo. He said that my stone wasn't 5mm as thought but 7 mm! He said the pain I felt was going to go on till I passed it and the stone was by the bladder.
It took 8 days to get from midway point to bladder and still couldn't get IN to bladder. The ER doc was fine with offering meds ("Do you want IV meds? Do you want a shot?") but terrible with allowing me to ask questions. He did another KUB which NEVER works on me and then a painful Ultrasound (turns out the stone was right where she was pushing and after 9 days my entire flank was on fire!)
He said no trip, sent me home with more toradol and a new antinausea medication but it's under the tongue so I won't be using it unless it is truly an emergency, and asked me to call this new urologist. He said if I felt it was stuck or I had trouble passing urine, to go to the other hospital (same chain) b/c I'd need surgery.
I'd been w/o sleep for days and was having some bad but not IV worthy pain. I wish that oral Toradol worked for RSD- it's a wonder drug for stones. I went home and felt like I had to urinate every 10 minutes. The pain was low and keeping me awake. I decided to take a hot bath- warm is usually all I can do for foot but my bladder/ureter needed heat.
After getting out I was thirsty but couldn't face more water so I slammed a Sierra Mist and finally fell asleep. I had 90 minutes before getting up for the urologist and I was rushing around, getting ready, when I decided I'd better check on my "hat" that collected urine. Imagine my shock when I strained it and saw not 1 but TWO kidney stones! One was the largest I've ever seen and had pointy things sticking out. The other was smaller but still good size for a stone. I was SO thrilled! Not only was it over but I caught them!
An hour later I triumphantly handed them over to the new urologist who also has not much personality. She did another KUB and said we're going after the ones in the kidney, especially the large ones, with lithotripsy. Anyone have this before? She gave me like 5 minutes and just to give me orders, and was just too weird. Maybe she never saw a HAPPY KS patient before?
So the large stone measured at 7mm! It was by my bladder at least 2 days that we know of. Why they didn't see the 2nd one is beyond me. But now I face having this procedure in next few months and I'm not sure I LIKE this doctor. Do I trust her to put me out?
But then I don't EVER want to go through this again. Worst pain of my life, and that is saying a LOT. And I'm STILL sore, unable to sleep, and feel like I went a few rounds with Mike Tyson, inside and out.
Anyone else have kidney stones here? What should I expect with the surgery? Is the after-pain normal? I just feel wrung out. I'm exhausted and have SO much to do. I'm awake at 220am but can barely keep eyes open.
Anyway, since this is turning into another chronic pain problem, I thought maybe someone here might have info, advice, etc. I'm really glad I passed these darned things and have a photo of them but no where to post it. 10 days now, almost 11, and my body is mine again, for now anyway!
Thanks for listening. It's difficult to explain all this to someone who has never had any real pain. People try and listen but there's no way to explain pain like that. Closest I can come is childbirth, and this stone was worse!
Hope everyone is sleeping well and having low pain days!
:) Jen
I have RSD but right now I'm being tortured by kidney stones. I'm 44, have had stones (small, not very painful ones) for 20 years. 3 months ago I was taken by ambulance to ER b/c I thought I was dying! Turned out to be a stone and I passed it within minutes of being there, or it passed into bladder.
Thing is, I've never seen one of my stones as I pass them usually at home and rarely seek doctor assistance. I've got meds for my RSD pain and anti nausea meds, so imagine my shock when they told me 3 months ago I had been passing multiple stones at same time on right side.
I figured I was okay for awhile. I travel a lot for work and was supposed to leave for Cancun,Mexico Tuesday. But 10 days ago I got ANOTHER stone so bad I needed the ER. They said it was about 5mm and would pass, gave me Flomax and toradol and I already had other pain meds. In fact, the pain meds they gave me in my IV were opiods and they didn't do a THING but this Toradol was a Godsend. I stopped vomiting and was able to calm down a bit.
Anyway, I got terrible diarrhea the next day and was sure I'd passed the stone, too. I was okay by Thursday, and drove my son (4) to visit family who live 7 hours away. On the way, it started moving. I stopped at a hotel and thanked God that my son fell asleep and I went through a hellish night, just grateful they sent toradol if I needed it. It beats morphine any day!
So I get to cousin's house and I'm sick again. Not BAD sick, just, tired, low grade fever, pain, etc. Not the deathly pain I'd felt before ER though. We left early from my cousin's b/c I wanted to see my doc on Monday. He couldn't see me till 7pm and I had a 5am flight Tuesday. I ended up calling and canceling it all (praying I get deposit back b/c I'm free-lancing) so I was already sad.
The Toradol works well but shouldn't be taken more than 5 days. I went to the ER again b/c the nurse at my Family doc's said to. Wanting to see if stone had moved I went, but the doctor there was very weird. All talk, no answering questions- lots of machismo. He said that my stone wasn't 5mm as thought but 7 mm! He said the pain I felt was going to go on till I passed it and the stone was by the bladder.
It took 8 days to get from midway point to bladder and still couldn't get IN to bladder. The ER doc was fine with offering meds ("Do you want IV meds? Do you want a shot?") but terrible with allowing me to ask questions. He did another KUB which NEVER works on me and then a painful Ultrasound (turns out the stone was right where she was pushing and after 9 days my entire flank was on fire!)
He said no trip, sent me home with more toradol and a new antinausea medication but it's under the tongue so I won't be using it unless it is truly an emergency, and asked me to call this new urologist. He said if I felt it was stuck or I had trouble passing urine, to go to the other hospital (same chain) b/c I'd need surgery.
I'd been w/o sleep for days and was having some bad but not IV worthy pain. I wish that oral Toradol worked for RSD- it's a wonder drug for stones. I went home and felt like I had to urinate every 10 minutes. The pain was low and keeping me awake. I decided to take a hot bath- warm is usually all I can do for foot but my bladder/ureter needed heat.
After getting out I was thirsty but couldn't face more water so I slammed a Sierra Mist and finally fell asleep. I had 90 minutes before getting up for the urologist and I was rushing around, getting ready, when I decided I'd better check on my "hat" that collected urine. Imagine my shock when I strained it and saw not 1 but TWO kidney stones! One was the largest I've ever seen and had pointy things sticking out. The other was smaller but still good size for a stone. I was SO thrilled! Not only was it over but I caught them!
An hour later I triumphantly handed them over to the new urologist who also has not much personality. She did another KUB and said we're going after the ones in the kidney, especially the large ones, with lithotripsy. Anyone have this before? She gave me like 5 minutes and just to give me orders, and was just too weird. Maybe she never saw a HAPPY KS patient before?
So the large stone measured at 7mm! It was by my bladder at least 2 days that we know of. Why they didn't see the 2nd one is beyond me. But now I face having this procedure in next few months and I'm not sure I LIKE this doctor. Do I trust her to put me out?
But then I don't EVER want to go through this again. Worst pain of my life, and that is saying a LOT. And I'm STILL sore, unable to sleep, and feel like I went a few rounds with Mike Tyson, inside and out.
Anyone else have kidney stones here? What should I expect with the surgery? Is the after-pain normal? I just feel wrung out. I'm exhausted and have SO much to do. I'm awake at 220am but can barely keep eyes open.
Anyway, since this is turning into another chronic pain problem, I thought maybe someone here might have info, advice, etc. I'm really glad I passed these darned things and have a photo of them but no where to post it. 10 days now, almost 11, and my body is mine again, for now anyway!
Thanks for listening. It's difficult to explain all this to someone who has never had any real pain. People try and listen but there's no way to explain pain like that. Closest I can come is childbirth, and this stone was worse!
Hope everyone is sleeping well and having low pain days!
:) Jen
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sorry that is not how it goes for you....this is second stone I passed first was in like 1995 or 96....on Guam and same not too much pain just some pain....
wishing I could tell you about surgery for them but no idea on that subject....perhaps someone else knows more than me....hugs bill sorry you went thru so much but so blasted glad you caught them to know they passed...I did not even strain my urine as doc did not give me strainer....
My other fear is that I won't be "put to sleep" b/c I've been on pain meds for so many years. It didn't work with my sedation dentist! The IV may have relaxed me a bit but it soon wore off and I was in Hell. But maybe with the lithotripsy they use full-on sedation?
The last time I went to ER for a KS they gave me dilaudid in IV on top of my current pain meds. It helped for sure. I was told I had approximately 25 more stones in my kidney's. Living with chronic kidney stones is horrible. Most of the time my current meds get me through the pain.
I do wish you the best. If your Dr. analyzes the stones maybe a simple diet change will stop them from recurring.
Healing hugs
If they are small, the best thing is to get an IV and push fluids. They have trouble seeing mine with a KUB so I get a CT.
The thing you have to watch with lithotripsy is if you get a lot of them you can damage the kidney and that is where I am. They are not sure if they should do litho's on me so the only option is surgery. And with having stones all the time I really don't want to go that route, but might not have a choice. They can also use a laser to try and zap the stone, but it's not always effective so they will usually send you home with a stent and then have you come back to try again.
But litho is the best way and would way rather have that than a cystoscope and basket. I had a terrible time with that one time.
If you turned your stones in, they can analyze them and make recommendations. Mine are a secondary condition to my autoimmune disease so I will always have them.
I agree they are awful and I would do anything to never have to go through them.
I assumed she was talking about lithotripsy but I'd been w/o sleep for so long, perhaps she meant something else? What I recall is that the 1 stone was so oddly shaped and had actual crystals poking up & after YEARS of passing tiny grains of sand or a BB size at worst, this was huge! 7mm or 7.5mm depending on whom you talk to or if you believe the CT or US.
She is worried about the stones still in the kidneys. She said there are well over 30 in one kidney and several of those are large ones, including an 9mm one. The other (left) kidney has lots of medium-large stones compared to the right, and she is quite worried that so many of them could block the ureter. The 7mm one WAS blocking the ureter for 2 days, stuck right by the bladder. Thanks to GOD that it went IN b/c I can't go through that deathly pain again. And opiods have no effect on the stone. The 1st drug they gave me was dilaudid, and I was still writhing in pain. The Toradol did the trick, though. But of course, you can't take it longer than 5 days.
My fear is of a stone getting caught, especially as I travel so much. I'm in Florida leaving for home later, but every twinge I feel or if my back hurts low- I get all panicky. So the smart thing would be to agree to whatever she wants to do to remove the stones from both kidneys, but isn't that major surgery? One wrong move and I'd lose a kidney! I thought lithotripsy was for stones in the ureter that were stuck, NOT stones in the kidneys. I have a LOT to learn!
For instance, is it now GOOD for me to drink a lot of water, or will that cause the stones in the kidney to start to move down to the ureter? I also worry about roughhousing with my 4 year old. He KNOWS Mommy has an ouchie foot that he never touches, but if he strains my back or accidentally kicks me while playing- can THAT cause the stones to drop?
It's amazing to me that after I'll I've been through with RSD, that it is these darned stones that feel like death to me. And I'm terrified of my upcoming appointment b/c I don't really GET this doctor. She seemed shocked I was so happy, but at the time I was beyond thrilled to have the stones in a baggie and not inside my body! And I calmed down quickly when my trip to Cancun was cancelled. I won't be returning until the surgery is done b/c I'm terrified to be at the mercy of the Mexican Hospitals. They require payment at time of service and don't take insurance!
That said, I understand that it's not an exact science. I STILL don't know why the 2nd stone never showed up on the 2 KUBs (neither stone showed on the KUBS and that was a 7mm stone!) or the CT or ultrasound. The CT and US showed the 7mm one but not the one that joined it.
Ugh, I feel so old talking like this. But it's just the worst! And now I'm terrified. I've been back to the ER 2 more times since I was taken by ambulance 3-4 months ago with the 1st big one. I NEVER did anything for my stones before that. They were so tiny, almost like sand or coffee grounds. But now they're real stones of real size and I can't live with the big ones. I don't want to be a chronic visitor to the ER- with all that entails. Nor do I want my poor son to see me like that ever again. But really, what DO you do when it hits and you cannot get in a comfy place for the life of you? If your belly hurts & you relieve this by one position, your back starts to burn with pain, and vice versa.
I also wonder if they DO take them out (however they do that) then what happens? More ones develop- we know that much. Plus the doctor was talking about the calcification of my veins! (In the kidneys.) I was in shock then and 2 weeks later I am still freaked out.
I see my PM doc on Wednesday but I called to explain how this had happened again so I am sure he will be ready for it. He will have to deal with the Urologist to get this surgery and anesthesia figured out. I'm afraid that his best patient might suddenly seem "difficult" to him. I sure hope not b/c I just want the facts and I don't ever want to go through that again! 3 large stones in 3 months is 3 too many.
Thanks again- I love being able to talk here about what to expect and also to get it out. Only my Dad of all my family & friends has ever had a kidney stone (he gets them all the time) so there's never been anyone, especially women, I can talk about them to but expect them to really get it.
Hope you all are sleeping well (unlike me) and will all have a pain-free week. Thanks again for the comments- every bit helps. :)
Hope they help if surgery is the prognosis hugs bill
Best wishes with it all,
Paula