always hurting

I am a 34 yr old female ,I have MSK and Nephrocacinosis in both kidneys I have had 5 surgeries to pick and laser stones out and stents put in. I still constantly hurt in my kidneys ,unable to sleep good and is taking a toll on me ,all I do is cry. My question is does anyone see a pain management specialist. Most of my doctors won't help as they say (Your not supose to hurt)  Tired of hearing that cause it does hurt! I'm getting very depressed cause I need help. Thank so much:)

[smiley1977]

Sorry everyone making myself older then I am I'm 33.

[MSKshelly]

Hi smiley, you've come to the right place and no your not alone.  Few doctors acknowledge this and many MSKers struggle to get treatment for pain. The reason is supposedly the kidney does not have nerve ending however when you have a UTI, /kidney infection your kidneys still hurt???  Some doctors know this it is the nerve endings that are attached to the kidney and to the incoming collecting ducts etc. I am not totally studied up on this specific area so excuse my novas explanation.

We are all born with MSK, it is a birth defect in the kidneys that causes little cysts in the collecting ducts.  This changed the draining of the kidneys making us more susceptible to stones and infection.

What ever the nerve ending issue we do know that their are several causes for the chronic pain many MSKer's get.  1. Is pressure in the collecting ducts themselves as the calcifications build up.
2, The second is that bacteria actually will attach to any foreign object in the body and form biofilm infections.  A biofilm infection is a low level bacterial colony that is pretty self contained.  So only a few bacteria slough off  etc. and it does not always show on standard cultures and test.  This is because our current culture system is set up to based on colony count or number of bacteria, to find acute infections.  Acute infections are life threatening... a chronic infection just makes you miserable!


There are things that can help with the pain and the infection issues.
http://www.medhelp.org/health_pages/Urology/What-To-do-For-the-Pain/show/577?cid=185

I would also encourage you to read through the posts here and the many comments of others just like you. Then feel free to contact me for more information or some articles for your doctors,

[smiley1977]

Thank you so much for responding ,I had to go to ER for help . Doctors app. Was on July 18 2011 have a cluster of stones on there way so I have been on pain meds. Now I'm just trying to figure out the dinners to cook that doesn't have the foods that I can't have:) Again Thank you MSKshelly , Smiley1977

[MSKDonnaNZ]

Hi sweetie

I'm new to this group, but I can tell you that your pain is very defiantely real and I have just been sent to a pain clinic after spend a year on oxynorm and about 5 months on oxycontin. Like you I found it very difficult to sleep etc. I can't say it makes me depressed as I feel there are plenty of people out there worse than myself, so hun if it helps you to think like that, I hope this helps stop your crying. My best advise is, if your Dr isn't listening to you, go to another Dr and keep going until someone listens to you and takes you seriously because someone will. I also hope that being in this forum helps you to see there are others just like you and I who are experiencing the same pain. My husband found this forum today and came home to tell me. I was blown away to see how many people are having the same issues and how much positive information is here for us. Should you want someon to talk to hun I'm always here. I have been unable to work for 2 years now. I do a thoughts for the day that I email out about how I see life and the world around me, it helps to keep me focused and positive. I'm so hoping your Dr has you on medictaion for the pain. This probably helps me be positive, if I had to be in constant pain all day I'd be a mess. Your note touched my heart and  I just wanted you to know you are not alone and Iook forward to walking this journey with you.
kind regards Donna :-)

[smiley1977]

Thank you Donna, still haven't gotta help,but I chose to go to Curves to exercise seems to be helping my depression,I know there's people worse then me ,I just want to do a lot more for my 4 kids. My doctor said there pain management clinic isn't excepting new patients so I'm not sure what else to do. he also told me they would'nt know how to help me cause they don't treat my condition.My urologist gave me a prescription of Percocet 5/325 all most 2 months ago b/c I had stones. I have been trying to make 30 last for a while. Have 4 left:( would love to find a doctor who cared. Thank you Donna:)

[taelamael]

I was diagnosed at 22 and I'm 24 now and have been in pain management for almost a year now. I'm also studying to be a nurse and have some knowledge of this area. The best way I had it described to me is that movement from the stones is going to cause pain regardless of whether they are in the kidney or ureter. The ureter spasms during stones and cause pain with the biggest being 5mm before they have to do surgery. Basically with having so many stones so often when material passes its going to inflame and cause pain, regardless of whether its in the kidney or elsewhere. I've had to have emergency surgery to remove a stone after it burst in my kidney and even then was too big to pass. That was my first stone and how i was diagnosed but i can tell you they definitely hurt, the pain is real. I've talked with many doctors and they all have their opinions I would just recommend finding one that will discuss what exactly your options are for living with this. I see 3 doctors myself a GP, Urologist, and pain management doctor and between them I'm able to stay healthy and out of the hospital. Through treatment the stones have been small enough that they haven't caused complications other than infections. As long as you stay proactive and know the signs its manageable, but cases are always going to vary person to person with this disease. State laws vary on pain management as well, most of the time it involves a referal from another doctor, I was referred by my urologist; you could look into this option. If that doctor isn't accepting patients you should look for another clinic. I've had several surgeries and infections already so its only after doctors are aware of this they take the condition serious and give me the treatment i need. Most often its just antibiotics and pain meds =/ which is tiring after awhile; but everything has been a little easier since i started pain management. I would look into it if you think it will help

[smiley1977]

Thank you for your comment , I appreciate every information that you and everyone has given. I am gonna have a talk with my Nephrologist again and see if he can refer me to a pain management doctor ,if not I will talk with my Urologist and if I get know where ill be looking for new doctor. Just want help and so far the only help I'm getting is from everyone here and thank you all so much. Any information anyone has is so helpful. Thank you ,smiley1977 , My name is Amanda.

[johnnylongtime]

Wow this is an awsome place.msk here as well im 30 now got dignosed when i was 13.if i could be certified i could be a doc.lol.anywho.i moved from SF bay area to oregon in 04. I had gone to urologist from san francisco to san jose.thats alot of docs.none of them knew about msk so they refferd back to there schooling and all said u should not hurt.so i moved to southern oregon looking for help well got same answer here too.so I did reading on my own for a year while geting meds from friends. A year later 05 or so was reading a doctors mag(and i hate to read) I came across a doctor that has one the awared for best urologist since 96-present. So i hade my lame pcp

[johnnylongtime]

cont)..my kid hit the post button while i stept out....so cont from above....call and set up an appt. I had every file since i was a kid withme just in case.well he has been my savour ever aince. There is no cure but there are ways to live with it.my stonea are callcium oxa--.so i take a med to lower my calcium but in the sme way it depletes body of some needfull things so i take another med to combat that.and of course tones of pain meds cause this does hurt.sorry about my spelling im on myphone writing this just wanted to be apart of this.and if anyone wants this docs info just ask.And i found out urologist are urologist because they want easy paitents like older people(no dissrespect)whom have easyier probs.thats why people like us get our lithotripsy,blasted,cystcostipys two months out grom when we really need them..thank johnny

[taelamael]

Not a problem, I'm David. Pain management was extremely difficult to get into here. I had to see 3 doctors who told me I was faking it until they did my scans and even then refused to treat me after they discovered I had been in pain mangement previously. I went to the ER was told they can't discover whats wrong and later diagnosed with prostatitis by a urologist (really bad case went several weeks untreated). I finally found a doctor who was shocked and appalled as much as I was by this behavior. (price of moving to a new area sadly). It can be a struggle to find the right doctor but there are those out there who will do anything they can to improve the quality of your life and make sure you stay healthy. I would keep searching until you find someone your comfortable with that is giving you the treatment you need.