My rsd has become more active since about 2 years and recently my sp catheter changing, which i had for years, have become much more painful and leave me sick and without energy for a week or more. A nurse changes it for me. Anyone have problems like this?

Lots of love,
Mieke

Mieke

What's the catheter for? I'm a little confused.

What does your doctor say?

AHi,
It is a catheter through my belly because my bladder doesnt function good anymore after losing my first and only.baby in an ectopic pregnancy, where it was growing in the tube instead of in my womb.

My Gp doesn't know what to say about it. I have als a urologist but both of them are not familiar with RSD. The doc that used to treat my RSD sent me home the last time a year ago to take it very easy and move when i can but that for the rest she did not know how to help me anymore......

Oh OK, sorry I was a bit unsure. Boy that sucks. Can't they refer you to a specialist, or a hospital that is familiar with RSD patients?

Can you call the support group for names? I'm sure they know by now, through their many interactions with patients, where the specialists are.

I'd start with the urologist, but also see if you can check back in with your pain doctor. Perhaps this is a spread of the CRPS into the bladder (which is frequently affected in long term patients) and perhaps the uro along with the pain doc can help figure out some help. Do you use lidocaine during the cath change? (Hubby has SP due to MS) I know it can be common to get some bladder spasm during the change, do you take any anti-spasmodics for the bladder already?

Yes i contacted the urologist and i got the advice to put a clamp on the catheter so there would be some fluids in the bladder and then it doesnt hit the bottom of the bladder that harshly. I usually get cramps from that so not sure if that will help. I just read the rsd puzzles of de. Hooshmand and am thibkobg about going on that diet. I have not been drinking enough water either so i hope a radical change in diet will do the trick.
I do believe that there is rsd in my bladder so im not sure if something can be done about it.....

Love,
Mieke

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With a catheter its really important to drink enough fluids. Your bladder has now shrunk because it no longer has to really hold anything for any length of time. So if the catheter bouncing is irritating then you need to let the bladder fill some (thus the clamping) and you also need to increase fluids really well.