Living with msk pain.

Hi all,
I'm not sure how this site works so please accept my apologies in advance :0)
I was finally diagnosed with msk last year after 10 years if infections and stones. I am a 33 year old primary school teacher in the uk and I am now entering my third month of work. I passed a stone at the beginning of February and the pain has been constant since. I have had a stay in hidpital after a uretroscopy and two weeks ago a lithotripsy. My gp is lovely and has prescribed me every painkiller under the sun. The only thing hat touches the pain is morphine. Today I didn't take anything and I am now lying in bed sobbing with the pain. I don't want to take anything because I just feel like half a human on it. I'm 33 and I have to walk with a walking stick to hold myself up. My happy fulfilled life seems to have vanished overnight.
Anyway, the point of all this rambling was to ask how fellow sufferers cope. Does the pain ever go away? Should I just accept it? And why ih why do I have such pain if a stone isn't stuck?

Thank you to anyone out there who reads this.

Betsan x

[kimmyacz]

Hi there and sorry to hear about your pain,
I am 35 yrs. old and have had MSK for 3 years....it is very hard to deal with and alot of people here (in the U.S) don't seem to understand it well. Luckily you have a good doctor that is a start...as for the pain well I know I have pain alot in my back and abdomen even if not passing a stone. Or you could have a stone "stuck" or just the ureter spasms causing pain. I know what you mean about taking meds and not feeling like yourself...I try not to take pain meds but some days are just so difficult... Sometimes a heating pad helps me get thru the pain. For me I just take it day by day...I work also and have missed alot of work because of all the stone problems and pain...it is a constant struggle. Hang in there and keep us posted....remember you are not alone in this....
   Hugs.....Kim

[ChitChatNine]

Hi and WELCOME,

Here are some good links compiled by members of our community to take a look at:

http://www.medhelp.org/health_pages/list?cid=185

We are so sorry you are in such pain .. others on the community are, too, at times ...

Please keep us posted,

C~
MSK w/stones

[Betsan]

Thank you so so much. It's wonderful to know there are others out there who understand what it's like.  ✿❀✿❀

[MSKshelly]

Betsan,
  You are far from alone! Sorry your in pain! Sadly many of us with MSK have constant unexplained pain!
There is an article on this listed below.  If you would like more info., links or some pdf articles to help explain MSK and chronic pain please just send  me a message, we are not to post e-mail addys etc. here or send you some pdf articles that might help you as well!  

http://www.medhelp.org/posts/Medullary-Sponge-Kidney-Disease-MSK-/medullary-sponge-kidneys/show/565929

Together we have found some treatment options that help and I pray in time we will found even more answers!  Again feel free to pm me for more info etc.

Shelly

[MSKshelly]

PS this one lists treatment options for the pain levels that we currently have seen help!

http://www.medhelp.org/health_pages/Urology/What-To-do-For-the-Pain/show/577?cid=185

[Betsan]

Hello my fellow spongey people,
I'm off to hospital tomorrow to see my consultant. I'll let you know how it goes.
Hope everyone is doing as well as the can.
Betsan x x

[Betsan]

Hi all,
So I went to hospital and had another Xray and saw my consultant. He is lovely, but doesn't understand why I'm in so much pain if there isn't a stone on the move which he says there isn't. At the moment the pain is in my side but I also have excrutiatingly deep pelvic pain. He is convinced that this can't be to do with the MSK and is now sending me for a MRI and is referring me to the pain clinic.
I just don't know what to do, part of me thinks I should just go back to school and try and work through the pain. Another part of me just wants to give up completely!
Hope everyone's having a happy and healthy day,
Betsan x

[MSKshelly]

If you want to send me your e-mail address I can send you some articles on MSK and the pain issues, to show him your not alone!  Read through the old posts, and look in the Health pages too and you will find this is typical with many of us on this site.  You can take many of the posts to your doctor to show him your not alone and give him some treatment options too!

I hope we can help make a difference for you.

Shelly

[Betsan]

Thanks Shelly! I'll message you my address. I did mention to him that I had been doing some research and had found some wonderful support. My pain at the moment is in my right kidney and also (apologies if this is too much info for people) down in my pelvic area and groin. In particular in my labia. My GP says this is referred pain but when I said that to my consultant he said it couldn't be as there wasn't a stone on the move. He thinks there's something else wrong causing that pain. I don't want there to be anything else wrong with me, I honestly don't think I'd cope with it. Does anyone else have pain down there?
Thanks again to all my fellow spongey people. You are a godsend and I'm so glad I've found you x x  

[tinnes]

Hi Betsan, thank you for your comments and support .I am way over in Canada and I understand a lot of what you are saying.I don't have pain in my pelvis however my bladder is in constant discomfort and I wondered if the pain you are feeling  is from pressure on your kidneys and bladder,almost like a strong bladder infection can give you a feeling of pain ( in that area) I know if it were me I would think that. Hope this helps a bit. If you find out I would be interested to know .  Thanks    Tinnes

[MSKshelly]

I have found that many of us who have MSK also have Interstitial Cystitis  or chronic cystitis as well. IC is  a chronic inflammatory bladder disease, I am an IC support group leader.  We have an IC support group here on medhelp and I also have a website  at MOARK IC with a lot of articles and information on it, feel free to contact me (pm me) for the links.  I lost my saved links even of the ones here on Medhelp so I have to look them out!

More later!

Shelly

[roulita]

I have msk. I've known for 3 years now. I always thought I have back pain due to muscles. Recently did an MrI on my lumbar spine and docs found I have a mild disc.  Nothing that would cause me severe pain for just one day and go away by itself the following. I don't suffer from stones. At least none that I know of. I have never passed one so I'm not sure what to relate my back pain to. I will be going to the urologist soon to pursue more test. Can someone explain to me somewhat what this pain feels like. My pain starts as tough it's a muscle spasm usually on my right but much lower than the kidney area, right above my hip bone and starts circulating to the middle of my back and shoots towards my abdomen. I also fell sensation on both legs. That how low it radiates. Please help me explain that pain to see if it related at all to kidney stone. I hve not done an ultrasound or ipv for 2 years Now

[MSKshelly]

For me the, the pain is like a dull, slowly increasing to sharper crushing feeling that
then becomes shooting pain.  If I wrap my arms around myself, the pain starts right where you hands reach, at the end of my rib cage and a little into the rib cage itself.  It the goes down into right flank pain spiraling to the low right side then shooting down the leg.

Stones in the kidney and infection that does not show on standard tests, can cause severe and chronic pain.  You can learn more about the in the healthpages or at my MOARKIC website.

Hope that helps!
Any others have a description????
Shelly

[Betsan]

Hello my fellow sponges,
just thought I'd give you all a quick update! I have returned back to work! It's exhausting but I'm so glad to be back. I had to see occupational health before I returned and was told that with aCcondition like this I would be considered disabled. Bit of a shock!  I'm going to see another specialist at a different hospital on Thursday after losing faith with my local hospital. They don't care and just keep blasting me with lithotripsy every month just for the sake of it. I've seen the pain management dr and I'm trying to get seen privately now for a nerve block in my T12. I've been told that all the constant pain I get in my groin is residual pain. My brain is remembering all the pain from passing so many stones :0( fingers crossed that works as the daily morphine can't be good for the rest of my body. So that's me, some days I find terribly horribly hard and other days are not too bad. This forum and it's members keep me going, knowing I'm not alone and it's helped me to make a really really good and lovely friend, Sarah. Keep smiling and going spongey people and remember drink that water x x

[Notinagoodplace]

Hi honey I'm sorry to hear you've been in soooo much damn pain! I know in this heat it's tough to, just keep drinking the water.....I didn't realise you take morphine daily! That *****! you can email me anytime to no problem......I'll send you my email through the message system. Anyway I'm still not sure even if I have MSK...I'm organizing a 2nd opinion at a private hospital, sick of the pain, stones, and now nephrocalcinosis...and being told you don't have pain unless stones are migrating......yeah well I am not imagining it it's REAL!
Take  care sweetie....J

[tinnes555]

I wish you the best and hope it gets you back and keeps you at work or where ever you want to be. As for me I have to take time off indefinetely . The appointment at the nephrologist was a disappointment to say the least,I knew more when I went in than when I left.I hope drinking 3-4 litres of water will be enough each day. Really keep your spirits up and know we all here know what it is like.    Christine