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Regular Member

Date Joined Nov 2005
Total Posts : 184
   Posted 6/16/2011 6:50 AM (GMT -7)   
Hi, Anyone with renal pain may like to meet others with the same. We can be found on the LPHS support site on Facebook. Renal pain my be due to a condition called Loin Pain Haematuria Syndrome or Nephroptosis.

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 6/16/2011 11:15 PM (GMT -7)   
Hi Allys,

I hope you are finding good support for the LPHS folks. We have had maybe 3-4 people with LPHS over the last 5-6 years. It's rare enough that we don't see many people with it.

There are also other kidney diseases that cause chronic pain. One is something my SIL was diagnosed with a few months ago. It's called PKD or polycystic kidney disease. Basically cysts begin to grow on the kidneys. These can cause horrible back and loin pain. The only cure for this is transplant but in the mean time the patient suffers from chronic pain.

I wish you luck and less pain every day!
Moderator on the Fibromyalgia and Chronic Pain forums
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.
Use the talents you possess, for the woods would be very silent if no birds sang except the best.

Regular Member

Date Joined Nov 2005
Total Posts : 184
   Posted 6/17/2011 3:40 AM (GMT -7)   
Hi Chutz, Well done you for keeping going with the job of Forum moderator for so long!  There are now over 150 of us on the lphs FB sites.  Personally I don;t think it is as rare as we think but it is not diagnosed or mis diagnosed.  An lphs specialist diagnosed 5 new cases on his first week working in the UK!  I pop into the healing well site every now & then to try & 'catch' any potential lphs'ers!  I am aware of PKD & see people with it on the renal FB site.  It is incredible how much pain is in the world.   Do you remember Kim & Sue McQuarrie from years ago?  I know that Sue is on the FB site but not sure about KIm.  We also have our own site!
Best Wishes from Alison
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