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This Forum is for patients who suffer from Loin Pain Haematuria Syndrome, their supporters and friends. We also include those who also have IGA and IGM as they are closely connected.
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Title: Poll: Help from South Africa
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Rae40
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Registered: 18/03/2006
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(Date Posted:18/03/2006 23:39:44)

Hi, I was eventually diagnosed with LPHS in 1998 after hundreds of tests, months in and out of hospital and various operations. It was really a harrowing time I still get the symptoms of bleeding and severe pain but try and live with it but am obviously find it difficult at times. Anyone who can offer advice onnon-invasive treatment???? I reached apoint where the Urologists and Nephrologist wanted to perform an Auto Transplantation but this had at that time not yet been done in South Africa where I live.RegardsRae

Kim Hughes
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Registered:01/06/2003
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(Date Posted:22/03/2006 15:35:56)

Reply to : Rae40
Hi, I was eventually diagnosed with LPHS in 1998 after hundreds of tests, months in and out of hospital and various operations. It was really a harrowing time I still get the symptoms of bleeding and severe pain but try and live with it but am obviously find it difficult at times. Anyone who can offer advice onnon-invasive treatment???? I reached apoint where the Urologists and Nephrologist wanted to perform an Auto Transplantation but this had at that time not yet been done in South Africa where I live.RegardsRae

Hi Rae

Here are a few ideas to help lessen the pain of LPHS.  They come from several people here on the forum, not just me.

  1. Avoid alcoholic beverages.
  2. Avoid caffeine, in food and in medications.
  3. Use a heating pad.  Lying on one helps me a lot but you must be careful to avoid burns.  Most heating pad instructions say NOT to lay on them. This may be due to the heat dilating the blood vessels around and within the kidney
  4. A warm or hot bath can be very soothing. This, too, may be from dilating the blood vessels.
  5. Avoid long trips in cars, airplanes, trains, etc..  The vibration from the vehicle may be the problem here. I think almost everyone on the forum has complained about this.  You can't always avoid this, of course.  I seem to have problems with trips over 20-25 minutes.  I also spent an hour and fifteen minutes in hell because I was seated right next to the jet engine (literally, all I could see out the window was the engine) of an airplane on a flight home.
  6. Lessen your activity level and/or learn to pace yourself.  This may have something to do with the hypothesis that blood pressure plays a role in LPHS pain: the idea being the increase in blood pressure (though not to a abnormal level) cause the glomerular membrane to crumble causing blockage and bleeding within the renal tubules.
  7. Be willing and open to try anything as long as it is not invasive and carrys little risk.  Accupuncture, aromatherapy, etc.. may or may not work for you.

The idea is for a cumulative effect.  One or two of these things may not give back your quality of life.  But, a combination of things, along with therapies from your doctor, may give you back some of what you miss.

Can anybody add anything else?

 
pussycat56
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(Date Posted:16/05/2006 15:05:06)

Avoiding stress at all levels is my tip.
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