Hello MSKers! I am new to this support group! I have had surgeries, stints, numerous CT scans, ultrasounds, KUBs & more! I go to my doc every 6months or yearly, depending on my status of stones! I recently had my check up, July 2011, & there are several small stones in both of my kidneys. I know the drill...water, water & more water!!! I am an excellent water drinker, however, I sweat a lot & I rarely have to go to the bathroom! Therefore, my stones do not get flushed out...
I now have been in pain, off & once since Wednesday...today, I woke up in servere pain, ONLY on my RIGHT kidney!!! Does anyone have any suggestions, helpful hints, stories, etc. to help my out? I am trying hard NOT to make a trip to the ER!!! Thank you all in advance! Heather
I am much like you, but the majority of my pain is on my left side. Fortunately, (or unfortunately depending on how you want to look at it), I know the reason for my pain. During my previous episode in 2009, my doctors decided to attack a large stone with an all out assault. I had a lithotripsy every week, 3 weeks in a row. The constant beating deformed my left kidney (it is now shaped like a horseshoe), and caused massive internal bleeding. My left kidney was over 90% blocked by a large hematoma. The result of that was a week long stay in the hospital to drain all the blood off of my kidney, as well as a laser surgery to get rid of the stone. I was told by my urologist that I had a large stone that was too far up in my kidney to do anything about, so I have suffered with it since & have finally been dealing with it for the last several months. I don't think that my left kidney will ever fully recover from that episode. Oddly enough though, I do find that when I am in a lot of pain on my left side, laying on it helps a bit but I haven't figured out why unless it's just putting the pressure on it. Sometimes I use a heating pad too, but that doesn't always work. In any case, I hope you find some relief soon.
Hi sweetie I'm shocked to read that you had 3 lithrotripsy's in three weeks, i have also been down that track but was only ever allowed to have them monthly. I am riddled with stones. As my stones were too hard they then sent me for urethoscopy laser, but as they couldn't get all the stones and I was still in pain I then have had two PCNL's on both kidneys at varying intervals. After having my right kidney lasered in May 2010 I have been left with constant pain (much like hard labour pain) in my bladder, right ureta and kidney since. I have been on oxynorm since July 2010 and then in April 2011 was put on oxycontin as well. I'm currently under the Pain Clinic and they have put me on Amitritalyn which is an anti depressant (no I'm not depressed) but this anti depressant acts as a nerve block. Apparrently your body gets so use to being in pain it can't switch off. I see a Physcologist this Thursday to learn stragies to coping with the pain ie: meditation among other things, so we will see what happens. I'm pretty much open to anything to be pain free, but if this is meant to be my life then I intend living my best life with what I have. I have been unable to work now for the past 2 years and have been at home or in hospital during that time (whether that be with infections or procedures) But hey sweetie there are many others out there far worse off than I am. So I feel greatly blessed by the love of my husband and family. I'm not sure about you, but I have never flet why me, I think why not me, I feel this whole experience will make me a better person. I will be so much more aware of others who are suffering, so for me its nice to read your thoughts and your advise because having all you guys here, make s me realise I"M NOT ALONE. So thanks for taking the time to be there for those of us who are going through the motions every day.
I also do not ask "Why me?" - I figure it is what it is and all we can do is deal with it the best we can. I do however ask "Why does the medical field not realize how devastating this disease is?" I assume it's because they can only read what limited information there is about it in the medical books. My frustration stems from the fact that all of these doctors REFUSE to listen to their patients. I sincerely believe that they were willing to do that, they would gain a better understanding of how MSK affects patient's daily lives. Sadly, I think it's probably going to take a celebrity being diagnosed with it in order to make any advances at all. This seems to be the only time these rare conditions are brought to the attention of the world. As an example, it took my mother 15 years to get a diagnosis of Sjrogen's, but now that Serena Williams has it, the whole world is talking about it. It's going to take nothing short of a revolution by all MSK patients to get the point across I think - if we can stay out of the bathrooms long enough and muster the energy to get out of bed to accomplish that :)
I was diagnosed with MSK in April and I have been blessed with a great
Nephrologist. The first thing I should ask you is have you done a 24 hour urine test to find out what type of stones you are getting. I mainly produce based stones and my doctor had me go on a low oxalate diet. It's been very difficult to do so but I have had great success with it. When I first was diagnosed I was getting two or three stones a week, but since I have been on this diet I haven't had an attack in over a month. I see that a lot of people with MSK see doctors that are not kidney specialist. A key factor is finding a doctor that knows about the disease. I have done so much research on the right kind of foods to eat because I don't want to be in pain the rest of my life. I will fight this and I want to share with people what I have learned.
the key to the chronic pain issues varies for each of us. For many we have found that a chronic infection sets up within the stones. since this is a low level infection and does not show up on standard test since the bacteria do not slough off in suffiencient numbers, this is called a biofilm infection. Many of us get pain relief from antibiotics, etc. some are able to live on naturals like silverbotics etc. here is an article on the painand treatment options.
Hello I am so glad I found a place of which I can ask other people who are suffering from MSK for advice! My doctor said MSK is not a disease? But my question is there any way I can manage my pain without having to constantly take tylenol 3 and buscopan? I have two little boys under the age of 2 and walking around in a haze is not something I wanna have to do! There doesnt seem to be very many doctors where i live who know much about MSK I have had a constant pain in my right kidney for two days now! What does this mean? I'm at a loss for what I am suppose to do with the news of having MSK.
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