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Avatar universal

Tired of crying in secret...

I just wanted say hello to everyone and introduce myself. I'm 28, and my husband of 9 months is the one with MSK and he's going through a really rough patch right now. He's been in constant pain for the past 5 months now. He says it feels like a kidney stone passing in his ureter (after 15 years of passing stones he knows what it feels like). The trouble is, no one can see a stone. He's had MRIs, CTs, x-rays and even an ultrasound but the doctors say there are no stones in his ureter. All blood and urine tests show normal levels of everything and no infection. Though he's been having chills and sweats at night. They did see a stone in his kidney and thought the pressure from that might be causing the pain. They did a litho in the hopes that would help. It made things worse and though he's been peeing into a strainer, nothing's passed. They did another KUB x-ray and say there are no stones in the ureter and that the stone they blew up is no longer there. The urologist really doesn't seem like he knows what to do. He wants to do a uretoscopy followed by stent placement. My husband is losing his mind. He's scared this will make his pain worse yet again. He doesn't know what to do anymore. We had an appointment with the family doctor to try to get a referral to a new specialist but whe we arrived at her office we were told she had to cancel all of her appointments due to a family emergency...and now no one answers when I call her office to reschedule! It's just one bad thing after the other. I'm really trying to keep it together for my husband's sake. I know he needs me to show a strong face. I'm trying hard to be the positive one, always keep a smile on my face and tell him we're going to find someone to help him. He's recently been talking about how things would be better for all of his family if he just packed his bags and left. Then we could go on with our lives and not worry. This talk scares me. I'm reaching the breaking point. I usually lock myself in the bathroom and cry to let it all out. I can't cry in front of him because this makes him feel worse for "ruining my life with his disease".
9 Responses
168348 tn?1379357075
COMMUNITY LEADER
Hello, and WELCOME to our Community .. you are in the right place to get suppport because you are not alone.   Many of us are in pain.  I'll post below an article in our health pages about Why Pain and No Stone ....

Also others I'm sure will stop by with some more advice about the procedure or not doing it, etc.

I feel your pain and know we are here for you,

C~
168348 tn?1379357075
COMMUNITY LEADER
730180 tn?1249543941
Hi there

I know some of what you are going through having been the husband of an MSK sufferer for 29 years.

If there is anything I can help with or you need to ask me feel free.

489228 tn?1291531454
Your husband is far from alone.  I you read through here there is a lot of info and articles on MSK and chronic pain with no stone in the ureter and no infection shows on a standard UA !  I personally have lived with this and done extensive research on this
exact issues. I would be glad to send you via e-mails several pdf articles to help your
husband explain to his doctor what is going.  I am currently working on a research paper though incomplete, i do have the information in a form for those who need it for their doctors.  I know the desperateness of what your husband is feeling,,, and we want to help you.  That is what this site is about.  Read through the old posts, go to the healthpages on the top right, these have articles on this subject!  Here is the direct link to this:

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

I also have some resources and article explaining about biofilm infections that many of us have...and it sounds like this maybe your husband issue with the chills etc. Biofilms are low level bacteria that set up with the calcifications in our kidneys... though they make us sick and have pain they do not show since the bacteria only slough off in low numbers and so rarely culture out!  You can get to our MOARK IC
website(this is mainly to support IC patients in MO and Ark) BUT there is menu item for my MSK research.

Again pm me for my e-mail address also and I would be glad to send info to you to help you find answers as well!

HUGS please know and hear me you and your husband a so far from alone!  I have personally talked to hundreds just like him with the same unexplained symptoms...
we are not all crazy it is real and we are finding answers for the whys!

Keep in touch so glad you found us!

Shelly
489228 tn?1291531454
PS There is also an article written by Kevin for spouses on our website too.
With a blog he started for you all.  The menu item for that wonderful article is Partners in Pain.  I think the article is also in the Health pages here though contact info had to be removed...that is in the one on the MOARK IC SITE.

MY heart right now is seeking more resources for the families and the impact chronic illness can have on a marriage...I am afraid I know that personally and my marriage has suffered for it.  It is often as hard or harder on the spouse to watch and not know how to help!  I appreciate those supportive enough to help look for answers and be a part of their support network!

Shelly
Avatar universal
Thanks so much for your support everyone. I can't imagine how hard it much be for those that are actually suffering with this. It's hard enough for me to deal with the frustration that no one seems to want to help my husband...or they just don't believe he's actually in as much pain as he says he is.
Avatar universal
Hi there!! Haven't been on for a while, I have passed a few stones 2-3 with out much pain. My question is has anyone had headaches or migraines for a few days before passing a stone?

On Sat morning I woke up with a migraine (never had one before) and now I have had a headache for 5 days, and now my right side is very sore crampy when I breath or move, must be a stone...

Thanks for the info
Makao
489228 tn?1291531454
I have not made that connection personally, maybe just not put it together
however I saw this question as by some one else recently.  If you fighting
infection etc.a headache can definitely go along with it!  Sorry I could
not be much help.  It could also be a metabolic issues which we often have
maybe ask your doctor to check your potassium level esp. and then
the VitD.

Shelly
Avatar universal
Have to agree with the marriage issue just recently finding out my husband of 6 years has been unfaithful due to the pain and lack of sex
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