I am a 35 year old who has been getting kidney stones and infections for as long as I can remember. I really remember my first truely painful stone at the age of 19. Over the past 16 years I have had more then 1,000 stones. (I know sounds like a lot), but they seem to come in numerous numbers at the same time. I had been diagnosed with MSK and I have been seeing the same doctor for 7 or 8 years. I am in cronic pain (even when I don't have any stones). I know my doctor thinks im "drug seeking", but I really do not see him until it gets really bad (maybe twice a year). Any type of pain meds he gives me I do stretch out over several months. I just recently went to the ER over my kidneys and was told I have 3 - 1 mm stones in my right kidney. I knew it and could have saved them the film. I made a follow up with my doctor and kept my appointment. As he entered the room of course he is like Amy Amy Amy.....What is going on. As I explain I have some stones, he goes into my blood pressure being sky high. (I really wanted to look at him and say well duh doctor I hurt like a M***Fker(sorry about the language). Then he looks at the ER report and says well you have 3 stones but you should not be hurting they are not in the uretha!!! WThec? Well he looks and says "What do you want me to do?" I asked if I could have some pain med and something to help with the feeling like I had to urinate all the time. He says what kind a pain meds and how many. Well thinking okay small stones these should pass in a week. So I ask for 20 pills. It has been two weeks and I am still in such bad pain. I called to see if the doctor would call me more meds and I was told "No". Then as I explained that I had a few pain pills let but I was really afraid I would get stuck this weekend and end up at the ER. They said well would you like to schedule an appointment to see the doctor. I just told them Why pay him for him to ask me "what do you want me to do"? I really feel like my doctor does not believe me and thinks Im seeking. As of 48 hours ago I have did ask for them to refer me to a Nephrology doctor and I still have not had a call back. Question "Does anyone retain water to the point you gain 15 to 20 lbs and it stays for weeks at a time?"
Edema or swelling due to water is often a sign of an infection which is the most lethal thing to people suffering with this disease. Kidney infection to be exact I believe.
As for the pain aspect everyone here can completely understand what your going through. In response to your doctor he sounds like a few I've seen who really just dont seem to understand anything about this disease, many honestly just dont 1) The disorder itself is not well understood 2) Typically patients with kidney stones don't start feeling pain until its in the ureter. I'm 24 myself and being this young with this disease after I moved away from home and the doctors who were treating me and had diagnosed me I began to see "THOSE" doctors. He/She probably does think your drug seeking and I would recommend finding another doctor. With modern society the pain drugs have become a huge problem for doctors and they really do see a lot of those people. They can also be held responsible say you OD because you were an addict. I'm just stating its important to understand their position as well
Now obviously if you have this disorder, your not faking all you'd have to do is go through these pages to see pain is a huge factor with this disorder. What I would do is find another doctor explain your symptoms, medical history,condition, and asked to be referred to pain specialist. THEY are the ones that primarily deal with the pain aspect of most diseases. I have been in pain management 6 months after being diagnosed and take 3 lortab 10's a day in order to control the pain and be able to function. A pain doctor CAN and more than likely WILL help you. They really have no understanding of the disorder itself but can monitor and adjust meds in order to cope with the daily pain. You will have to explain everything to them as I have had to but they will help. Going to pain management they do the same thing as the ER and are significantly cheaper ( $50 an apt. opposed to $1500+ at the ER) and give me the same exact treatment. With this disorder I know severity varies but I'm almost always in a state of passing a stone. My kidney is full and as soon as I pass one I developed 2 more. What is odd though I've never known anyone with this disease to never have a stone, that they are all gone unless they've had elective surgery to remove all of them and the cysts. If you don't have any stones and are still experiencing pain my only guess would be an infection. Your best bet in dealing with what you've described is pain management though, I would look into it and ask a PCP or Urologist about it. Good Luck
Thanks for the encouragement. I called my Urologist office again Friday, and yet still have not had a call back. Luckily my mother is a nurse and told me to go to my regular doctor and explain (which I know is the same thing). Im making my appointment this morning.
Thanks for the encouragement. I called my Urologist office again Friday, and yet still have not had a call back. Luckily my mother is a nurse and told me to go to my regular doctor and explain (which I know is the same thing you said). Im making my appointment this morning.
Please send me a private message with an e-mail address. I have some information and an article that you can send your doctor that might help!
I can not longer find the health pages on this forum but there are articles on there for what to do for the chronic pain also.
I was diagnosed at 17 after 6 months of doctors telling my parents and I that it was all in my head. My current urologist has been good but we've come to the point where he thinks I'm seeking. Luckily my PCP is wonderful and supportive. I have passed roughly 32 kidney stones in 10 years. I want to find other options for treatment but here in rural northern WI I don't have a lot of options. Plus I can't afford to travel far as I'm a single mother. I just found this forum tonight and feel so relieved to have people that understand the pain and the daily struggle. If anyone has any advice I welcome it with an open mind. Thank you all who are on this forum for talking and helping. Together we will find answers and become stronger. We will make the docs listen and understand that just because you can't pigeon hole us into a page from a textbook it doesn't mean our pain isn't real!
My mother has been diagnosed with MSK, and has been passing stones for the last 40 years of her life. Her father had to have a kidney removed in the 1960's because of all the stones in the kidney. Once I entered my 30's, I started suffering with kidney stones too. The problem I have is that mine are consistently too large for me to pass without surgery. My mother and I share a very compassionate urologist in Lexington, KY. He's great, treats our symptoms without question and performs our stone removal surgeries. However, I do not feel he is extremely educated on our disease. He tells us he wants to "study" us and find ways to make it better, but I'm not sure my mother can afford the wait. She is at a point where she is NEVER free of infection. Her entire immune system seems to be suffering and she passes kidney stones weekly. Chronic pain is a given for her and I feel so badly for her. I'm willing to get her to a specialist WHEREVER that person may be. If anyone can advise of a doctor who is an MSK expert, I would greatly appreciate it!
I m forty years old I pass one to three stones a month . I am so sorry about you and your mother. I do not know how to deal with the pain anymore if you know of any specialist etc please email me at ***@**** thank you
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