Medullary Sponge Kidney Disease (MSK) Community
Does MSK make u feel unwell all the time?
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Does MSK make u feel unwell all the time?

Hi everyone and thanks for the lovely messages, i was just wondering if msk makes u feel awful all the time? Im having constant cramping and burning in my back and front and i feel really unwell. Im getting rather down about it and i havent got an appt to see the specialist yet. I have been checked alot for infections and it always comes back clear. PLEASE somebody help me cos i dont know whats causing me to feel this awful. Thanks again X
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168348_tn?1379360675
Sometimes a trial basis of antibiotics will sometimes help .. even a 3 day dose.  Oftentimes a dosing of the antibiotic (even when clear for UTI) helps a lot and those symptoms will go away but most Docs won't do it .. so unfortunate and so misunderstood.

Other times you may have irritation from a stone or gravel that has passed and cut up inside and left you inflammed.  Or the darn MSK itself is acting up.

There is an reference in the health pages which may help about MSK Pain w/o a stone .. worth a look at top of the page!

Glad you posted ... keep us posted,

Cheryl
MSK w/stones
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489228_tn?1291535054
Angela,
   I am sorry to hear about your pain and want to assure you that you are far from alone.  I am currently working on a paper of this very thing.
It is in the editing process so I hope to have it up on the board soon!

My hope is to get all the research in one article so maybe patients can get the help and respect that they need from the medical community.

In the meantime I will repost for you something I have posted to others going through the same thing:  (More later),

There are several options to try for treating the constant pain, and yes there are several of use who have constant kidney pain even when there is no sign of a stone or infefction.

There are two articles listed on here... One is an e-medicine article about Medullary Spong kidney, the other one is listed as new procedure for MSK calcifications.  Both of theses are on the lowere right corner of this page.  (If that is not the right e-medicine article let me know.)  

There are several therories for the pain and honestly the pain may have mulitple causes. One is that there is pressure that builds up in the tubes.  The article below about a procedure by Dr. Wolf is mainly for this type of pain.  The other reason that many of us suffer from chronic pain is a biofilm infection actually sets up within the many calcifications.  Because a biofilm infection does not allow enough of the bacteria to slough off in the urine to showup on typical test for infection, these infections do not always show up on a urine disptick at the office or a culture. I can send you many articles about this if you would n like to pm me... also check under the health pages here.. they have done a great job of listing articles I am just not sure if they have my list of them for biofilms but we will work on that.
I have also written and article that is on my website for IC under MSK that explains this theory too.  My website if mainly for IC)Interstitial Cystitis Patients in Missouri and Arkansas.  However I put a link on the site just for MSK to post my research etc.
This article really needs to be update but I have just been working desperately to get the site information done etc,  our support group is called MOARK IC and can also be googled.


The treatment options for the chronic pain appear to be as follows.

1. Increase your fluids and do not allow you kidney to get empty, since this increase pain,

2. decrease your meat intake to about 6oz a day.  the pain level does seem to increase if our kidneys have to process a lot of protein from meat.

3.  Ask you physician about trying a long term antibiotics... if you are on antibiotics for a long period of time does the pain go away?

    Along that lines many of us have found so relief of help through a natural antibiotics by American Biotech labs, called Silverbiotics. You can google the title and their website will come up.

4.  Going for massage for the muscles around the kidney etc. seems to help too, though many of us can not tolerate eve having our kidneys touched. The muscles seem to try to protect the kidney and actually knot up around it.  Going to a good massage therapist they can keep these muscles relaxed, I go to on through my local hospitial and they are really really reasonable.

5.  Last of all is the procedure by Dr. Wolf below.  Though this is not a cure, it is a treatment.  Some patients get relief dramatic relief by the procedure itself.

For those of us with chronic biofilm infections, the procdure seems to kinda knock the top layer of calcifications off, allowing the antibiotics to penetrate deeper into the kidney and therefore gives us a remission.  My understanding from Dr. Wolf is that on average this procedure last about 2 years but can be repeated.

6. My doctor talked to a physician, who wrote an article in MS Consult intitled the Complicated Urinary Track infection, great article but this physician has had some antidotal success with patients with MSK who have chronic infection.  I can not list the info here since at this point there is no research on whether or not this will work.  We are trying it, I am better but that may be more from having the procedure and my upping my dose of Silverbiotics.

I hope this gives you so hope and direction.  More then anything it will give you confirmation that your pain is real and you are not alone.  Taking this into your doctor can help you to get better treatment since truthfullly most of them just do not know and it goes against what they are being taught in medical school.  I am glad that joined this site and if you need any more info, you can pm me.  I do have several pdf of articles that we can not legally post the whole article here etc.  Also the CL of this board has a really neat website she has put together on MSK..., (Nancy) it is also worth checking out and I think it is listed in a thread and if not in the health pages.

So glad  you joined the site and hope this encourages you!!

Shelly
Shelly Matthewson
Private Researcher
IC Support Group Leader
Director of MOARK Interstitial Cystitis
****.***
"And we know that all things work together for
good to them that love God, to them who are the
called according to His purpose."Romans8:28
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592774_tn?1325397342
I have to admit I do feel unwell or in pain most of the time. I went to my uro yesterday and my urine was "clean" but I still am achey (achy) and having pain episodes. He agreed to give me 3 months of Bactrim to see if it helps. Being on antibiotics always seems to give me a boost of energy and wellness.  
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744395_tn?1232742147
Yes, there is always some level of pain or aching. This may sound crazy to you, but I've kind of had alot of painful things happen in my life, I don't get prescribed anything for my pain from MSK, and physical activity, Yoga, walking, and light exercises that do Not bounce the torso actually give me some feeling of relief. The flexibility and strengthening of surrounding muscle tissue supporting the core of our bodies can provide relief from alot of related symptoms. Hence, the staying active concept most people will admit being familiar with.

When faced with a condition that promises pain throughout the duration of a lifetime, I was compelled to find ways to keep a balance without requiring prescription pain meds, mostly which will be of the opiate family.  The compounded side effects of opiate dependence are something I do not want.  If you do some research on neurotransmitters and how they relate to pain response and mood responses, you can learn alot about adjusting diet in a safe way and/or adding amino acids or a supplement combination that is NOT damaging to kidneys in place of opiates.  I can't imagine I'd be able to continue my education and job if I were to rely on pain meds.
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489228_tn?1291535054
Each of us must do what we have to function daily!  I like you for many years ONLY used natural meds relaxation, exercise etc.  HOWEVER, when the chronic pain of MSK goes from a level one can live with daily, (and I too have a high pain level, I had 2 LARGE babies at home with no meds, that broke my tail bone and separated my pelvic bone.0 This was not even found until 6mos after the birth of my LAST child, when I went to my doctor because my front pelvic bones were rubbing together at night...,) The sometimes a person may have to use pain management to function daily.

I fought and refused to take pain medication for many many years.  Finally, my pain level constantly was so high 7-8 that my GP insisted that I begin pain management since the pain was effected many areas of my health.  In reality, I thought I was helping myself however, in truth when we allow pain at such high levels to go on for long periods of time, then you set up pain pathways in the brain that are very difficult to break!  As well as nerve pain can set in, which is much harder to treat!   I hated taken ANY prescription medications and refused to use antibiotics as well... now the chronic infection requires that I live on them!  One of the biggest things I have learned through all of it is often what we might judge in others, we must walk through ourselves so we understand better! Taking medications was very hard for me to do!

Before going on medication, and even now to limit my need for meds I use many other
options as well, massage, relaxation, including tens units, Electromedical technologies which is a high tech machine using electrical impulses for pain much like a neurostimulator however less invasive. Topical meds as much a possible, etc., going to a physical therapist and even a pelvic pain PT for my IC to find exercises to help as much as possible. Heat and ice as well as using natural oils for pain!

However now WITH the two things I saw as enemies in my life,(antibiotics and pain medication) and some others too..I am able to function daily, be a mom and run a support organization as well as be actively involved in our church! I realized that taking medication too be able to care for my family was a totally different thing then taking meds to run away from your problems.


OH, and one of the amazing things,,, when my pain levels is low I don't even think about taking any pain medication!!  When you need it for pain your body uses it differently then someone taking it for the wrong reasons!  

I HAVE NOT DOUBT that you comment was meant as a suggestion to help people, however I have talked personally to more MSK patients living with chronic pain now then I can count.  All of them were honest people who did not want to take medication and before this disease became disabliling most of them did not even drink or would not take even tylenol!  Unfortunately many of them have been labeled drug seekers by doctors who refused to
READ THE FACTS AND UNDENIALABLE EVIDENCE ABOUT MSK AND PAIN, so
they are very sensitive about it!  Others ow finally are getting some pain management and get continually attacked by "caring" family and friends that can not understand!

I hope you understand what I am trying to say, and having walked through more then I can share as well, hope you accept the heart of what I am trying to share with you!

Shelly

Shelly Matthewson
Private Researcher
IC Support Group Leader
Director of MOARK Interstitial Cystitis
www.moarkic.com
"And we know that all things work together for
good to them that love God, to them who are the
called according to His purpose."Romans8:28

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168348_tn?1379360675
Listed above are all wonderful ways for us to control our pain but as long as we look @ them as ways that worked for each of us it's all great ideas.  However, one really important thing to keep in mind for all of us, moving forward on this community, is that each person is different and what works for some won't work for all.

In essense -- water hydration works wonders for some along with lifestyle changes but from what I've seen being a longtime member of many MSK Communities -- for many others with severe pain (since ea. of us are different and so are our presentation of and size/location of stones) water and exercise doesn't even make a dent in pain mangement.

I'd like to add to the list of helpers MedHelp's Water Consumption tracker .. a great way for overall water intake daily for  a healthy lifestyle and for us with kidney problems an excellent way to remain motivated to drink drink hydrate hydrate.

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592774_tn?1325397342
It is so encouraging when someone can control their pain with water and exercise. Hopefully I will be one of them again someday. Unfortunately, it is not the case for me now. I drink a minimum of two 64 oz cups of water a day.(Those giant insulated convenience store refill cups)  When I go out I wear a backpack with a water bladder and a hose that is over my shoulder that I sip on regularly. I still had intractable pain until my last surgery. I took Dilauded almost daily for 3 months and was incapacitated most of the time.  I admit I was concerned that I had developed a dependence or tolerance.  Then sometime after my last surgery, suddenly I realized I had not taken any Dilauded or other pain meds for 4 days! Obviously I was just taking it when I was in pain. I was very relieved. I do still ocassionally need a Darvocet or Dilauded, but it is on an intermittent basis. I think it has been 2 weeks since I took anything.
We realize that everyone's pain,tolerance to pain, and coping mechanisms are different and we are grateful for everyone's input on what helps them. I appreciate everyone's advice!
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Avatar_n_tn
I am to the point that I can not stand the pain from MSK let alone passing a stone every week or two.  I live in West Virginia and none of the drs that I have seen seem to want to help control my constant pain they tell me to pretty much deal with it.  Any suggestions on another place to be seen by a physician.
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I want to you to know that i can relate to having DRs that dont want to prescribe pain meds for the pain of MSK. I am in constant pain from it and FINALLY after a couple of years of pushing and dealing with alot of different DRs at the moment am on a little bit of pain meds but this is only for now it all depends what my urologist decides on Feb 18th
mostly all i can say is keep looking sooner or later you will find a DR that believes you.
There still isnt alot of info out there on MSK i know shelly and others are working on it but i guess for now thats the only advice i have for you.
Try printing some of the info from some of the threads from this site and taking it with you thats what i am going to do when i go see the uro. Wish i could tell you something better but thats all i know.
Shelly Nancy and Chit chat nine all have some great ideas and are always willing to help out those like you and me that still feel so lost out there maybe you could send one of them a PM and they might be able to help you a little more.
Good luck and PLEASE dont GIVE UP.
Keep us posted on your progress
Thanx
Steph
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592774_tn?1325397342
Lonnie1973, I would suggest you begin straining your urine as often as you can, but especially in the mornings to see if you are passing more stones than you even realize. That happened to me. I used a "HAT" to collect my urine almost every time and saved every stone, gravel  and grit I found. I put them all in a specimen cup.
Maybe the Dr. does not believe you are really passing stones. Bringing in a rattling cup with stones can do wonders. Drs. believe passing stones hurt, they just do not believe they hurt when they are just sitting in the kidney. We have so many stones in our kidneys, the docs. can't possibly keep track of each one. Showing a dr. the stones you have just passed might make them believe you need pain meds. Just a thought.
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489228_tn?1291535054
Nancy is right if the pain is from passing stones..., and we pass stuff that often does not show up on x-rays too...,I have had that happen too.

I am currently working on a research paper on MSK and Chronic Illness giving proof of that  many MSK patients have Chronic Pain even when they are not passing a stone or showing infection on standard tests.  (Please pray for me on this, I am way out of my league here and the paper is with several special people the Lord has brought into my life in the medical field to help me! I am praying for the right doors to open as to where and how to publish it, so that your doctor will not blow it off....this is taking a lot of time and work...One of these people is hoping to have time to edit it into medical format for me.... and I pray someone will put their name on it with me who has more credentials then I do!!)

The pain can be cause by several things and I have several article that state this.  One problem is that we can get a biofilm infection that sets up with in the calcifications in our kidneys, I wrote an article on this that I think is on the Health pages here, but is also on my website.  I was told here it is OK to post the link since it we do not have an MSK message board, The site is mainly for IC patients in Missouri and Arkansas.  I just have a link on MSK to have a place to put my research.  It also links people back to here:  (I left the spaces or it will blank it out so put it back together.)

www. moarkic. com

I also have a pdf by Dr, Wolf who describes a procedure that several of us have had that has helped our chronic pain issues tremendously.  I can not post that on the Healthpages, however if you want to pm me, I will send it to you, through your e-mail address.  Dr. Wolf by the way will see any MSK patient that has this time of chronic pain that his procedure relieves.  I drove to Michigan for the surgery.  Others have been able to give their doctors the article and they could do it!

Also read through the list of things for pain in my post above and we also made a health page out of those too!

THIS BIGGEST THING I WANT YOU TO TAKE WITH YOU LONNIE IS THIS:
1. YOUR NOT CRAZY,
2. YOUR NOT ALONE
3. YOUR PAIN IS REAL AND THEIR ARE REAL TREATMENT FOR YOUR PAIN
4. YOU DESERVE TO BE TREATED RESPECTFULLY AND HAVE YOUR PAIN
TREATED!
5.  THOUGH WE DON'T HAVE ALL THE ANSWERS, THIS IS WHAT THIS SITE IS ABOUT.... FINDING ANSWERS TOGETHER!  A PLACE WHERE YOU ARE BELIEVED AND HOPEFULLY EMPOWERED TO HAVE ENOUGH INFO. TO NOT BACK DOWN AND ACCEPT A LIFE OF LIVING IN PAIN!!  TOGETHER WE CAN MAKE A DIFFERENCE FOR US AND FOR FUTURE MSK PATIENTS.  BUT WE NEED EACH OTHER!!

Again, pm me with your e-mail address and I will send you anything I can that will help you!  I think someone else is in West Virgina too,,, Amie? I know she is having the same problems finding a doctor too????  BUT DON'T GIVE UP... there is some one out there that will believe you!

Shelly Matthewson
Private Researcher
IC Support Group Leader
Director of MOARK Interstitial Cystitis
www.moarkic.com
"And we know that all things work together for
good to them that love God, to them who are the
called according to His purpose."Romans8:28
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3137679_tn?1342985245
I to have MSK. I know what you are talking about
As far as your back hurts, flank pain, run down
No energy at at least I don't have any energy!
I also feel bloated a lot! It's like I have a bolder
In my side that just festers all the time.
My urine test are always negative too! I have seen
Specialist and so far no luck at all. They just put
Me on pain pills and requested I do a 24 hr urine test.

I'm really sorry you are having trouble. This is a
Really painful and depressing disease but Don't
Let it get you down.
I have past stones in the past but it was sand
Looked like beach sand in the filter.
I hope you find answers and when you do fill me in because
My doctors tell me there's nothing they can do for me!
God Bless!
Diddy
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Avatar_f_tn
Hi Shelly!

How r u? I was a member of this group a few
years back. Still having MAJOR health (MSK) problems and no success with the doctors. I feel like I will die with no treatment. I need help with how to get the dr to run the right tests needed to get me feeling better.

Sissy
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