I was diaognosed wth msk in the summer of 2008 after having constant pain and infections for two and a half years.During this time I had a really difficult pregnancy due to pressure on my kidneys and was admitted to hospital frequently.Since having my son and finally getting a CT scan to confirm what was wrong with me(I am sure my doctor thought I was a painkiller junkie) i have been prescibed TRAMADOL 50mg (2 up to 4 times per day).
I am still in pain and most of the time this does not even touch the pain but every time I bring this up with my GP I am basically brushed off.
I am at the end of my tether and wonder if any fellow sufferers can maybe give me any advice what to do.
thanks in advance
Hi there Karen,
I'm so pleased you've posted. It's so good (in a weird way) to find someone else from the uk who's suffering from this disease. I've so far only found one other person in the uk and she is a life support to me. I'd be lost without her. If you want to send me a message I'll be more than happy to email you. It has done me the world of good knowing I'm not alone over here.
On the pain relief front...I've had a nightmare year with pain. I used to just have pain when passing a stone. Since January I have had constant chronic pain which shows no signs of ever going. I have been given every painkiller known to man. Tramadol had me on the ceiling with severe vomiting. My gp took me off it straightaway. I was off from my teaching job for five months and have struggled to goback. I now survive on slow release morphine and paracetemol. When the pain gets unbearable I take liquid morphine. Not ideal and not 100% effective but at least I'm out of hospital and bed.
Anyway, get in touch,you are completely not alone!
Love Beth x
Karen, I am glad that you found us. As your read through the many post and Healthpages here you will see yourself over and over! You are not alone! The hard part I hear from those in the UK is the lack of choices when it come to medicine. Here is the link to articles in the healthpages that speak of the pain treatment protocol we have found the best so far. If you would like to send me a private message with an e-mail address I would be glad to send you articles to take to your doctor that might help as well.
Hope this helps and I pray we can get some research $$ to get this info out to doctors world wide in the years ahead.
here 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 infection.
There are two articles listed on the board.. One is an e-medicine article about Medullary Sponge kidney, the other one is listed as new procedure for MSK calcifications.
There are several theories for the pain and honestly the pain may have multiple causes. One is that there is pressure that builds up in the tubes. The article 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 dipstick at the office or a culture. I am working on a research article to better prove this with, lots of documnetation. 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. MOARK IC
the treatment options we have found so far, 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. More recently we are learning that Vit D can play a role in increase pain, infection and stones. Ask your doctor to test your vitamin D levels,
it should be treated if it is too high or too low!
5. 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 hospital and they are really really reasonable.
6. Last of all is the procedure by Dr. Wolf. 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 procedure 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.
7. My doctor talked to a physician, who wrote an article in MS Consult entitled 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, YET 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 truthfully most of them just do not know and it goes against what they are being taught in medical school. 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. Nancy is no longer the CL but her site is still good!
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