I am disabled now by LPHS

Female, 55, married, 3 children, 3 granchildren, teacher at a school for children with a learning or behaviour disorder. Dutch, living in Noordwijk in the Netherlands. Diagnosted with LPHS in 2005 at the LUMC, Academic hospital. My english is not the best, but I am trying. I have a very good kidney specialist and he was very quick with his diagnose. I have a specialist at a special pain departement of the hospital and I have mental coaching. Two years ago I even followed EMDR therapy. At the moment I have just heard that I can not work anymore being told I am disabled now by LPHS. I use a lot of pain medicines
( cymbalta, Lyrica, Oxycontin and oxynorm )

6 thoughts on “I am disabled now by LPHS”

  1. I feel your pain…I haven’t been diagnosed with LPHS, even though my nephrolosgist suggested that LPHS may be the culprate…I’m a 34yr old male suffering for 2.5 years. I was born with only 1 kidney. I’m on almost the exact medecations your taking, just replace oxy with morphine. Check with your doctor, cause my pain specialist has perscribed me Nucynta (tepentadol) recently, and it’s been working great…It is replacing my morphine, and the side-effects are non-existant. I was up to 120mg of morphine a day, which meant alot of drowsy days, but that was replaced by 450mg of this nucynta…I was on 500mg but it gave me a rash??? Go figure. Good luck!

    1. Hello Kevin,
      I did asked my nephrologist about tepentadol, but if I want to try that, I have to stop with all my medications before I can start with tepentadol. And to be honest, I don’t want to have so much pain, besides I do not have any side-effects with the medication I am using now. By the way, it is not my nephrologist who prescribes me my medication, it is an anasteasist ( I don’t think that is the correct spelling, but hey I’m dutch!)
      He is going to find out if, and where in the Netherlands, Spinal Cord Stimulation can be something for me. I see him in january. I will wait and see.

  2. I know what you’re going through, I’m 17 and this past summer I was diagnosed with LPHS after two hospitalizations and two trips to the ER. I’m on Oxycontin as well, along with another medication soon being prescribed to me later this week so I can go to school without being drugged up. 🙁 Hope a solution and possible vutre is found SOON.

    Stay strong everyone.

  3. I have had LPHS for 12 years. Hope you all know that there are at least 4 Facebook pages for people with LPHS & also livingwithlphscouk.fatcow.com if you email me I can give you info that I have written & Frank Maurone on FB has loads of research papers.

    1. Hello Alison,
      Do you have any information about Spinal Cord Stimulation? And do you know someone who has been treated with it?

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