Some help please…

My name is Melanie, I’m 29 and I was diagnosed with LPHS in October of last year, after a 3-4 year struggle with doctors and hospitals, hundreds of tests, 5 surgeries, and living in horrible pain. Unfortunately, I’m still in constant pain and feel like I am just at the end of my rope. I’m on MS Contin and Dilaudid daily and still in pain 7/10 most days, in and out of the hospital… I’ve been out of work since Oct and have no source of income and paying health insurance out of pocket. I recently had an experimental procedure in Manhattan where they dripped an anesthetic over my kidney for an hour, and I only had relief for 3 days. I feel like I’m out of options and so overwhelmed. Any advice anyone may have will help, I’m so tired of suffering.

6 thoughts on “Some help please…”

  1. My 18 year old daughter suffers from this condition and has been helped by a series of Celiac Plexus pain blocks (anasthetic with a small amount of seroids) and a fetenyl patch, which still allows her to function and avoids the ups and downs of oral pain meds, along with the associated nausea.

  2. Hi, I’m a sufferer of Loin Pain Hematuria Syndrome which was diagnosed in the Early 90’s. I am allergic to most medications and also to IVP Dye and Radio Active Dyes they use put my kidneys in trauma. I have tried the Pain Clinic route where they inserted needles with Steroids into the kidneys. That experience has left me mentally traumatized as felt like I was in a torture chamber. The second they inserted the needle the pain and any attempt to control was out the window.

    All I can say is that over the years I have learned to read the pain and medicate when it reached a high point only when I knew the pain would move into a surge. Also, when I have an attack over the top kind that leaves me bedridden for up to 2-3 weeks I take whatever amount of pain medication to cover the pain and liquid gravol as being a Natural Health Consultant (unemployed due to the condition) know that it is necessary to eat.

    I do take pure Cranberry Juice with 2 caps of Garlic and 1000 VitD3 when the bladder gets involved. Due to scar tissue in my ureter which acted like a stone which ramped up renal colic I measured my magnesium amounts in my food in relation to Calcium and supplemented the difference; as well took massive doses of Vitamin E Natural Source which did away with that scar tissue.

    When I have to go out to any function and know that my energy is very low with a constant nausea and pain level that’s moving up and down, I medicate with the pain med so as not to spoil the evening for myself or others. Of course, when considering pain between 0 and 10 when it’s surging upward and the pain is coming on in knife like pain along with renal colic and a bloating of the kidney then hey I bow out from the evening or day or whatever and put a movie on or take a hot bath, or read and do write. There have also been times when the pain was so over the top that I had to go internal and literally embrace the pain and along with prayer that sometimes provides help.

    I don’t have an answer to a cure as there is no cure, yet. I hope that as I’ve shared about how I try to cope gives you some courage to look forward and not be overwhelmed but try in some way to work with it and through it.

    Take Care,

  3. Dear mam, i was some what born with LHPS i have had nearly a dozen surgiers i have come across a Tens machine i dont know if you are aware of this machine or not. I used to use this machine exteranly its like a pulse current machine in witch you put pads on your body over your pain area. This helped me out alot until i devoloped a problem with the gel on the electrodes i always break out in some strange exma & my skin breaks open & bleeds. So my pain Management Specialist suggested an inplantable machine called a Spinal Cord Stimulator. Which has helped me emencely i still take morphine low dose & Endone for break though pain with this it is life changing i still can work & manage my pain at the same time.I live in Australia & i will tell you now there are a lot of restrictions with this implant it gives you half your natural life back. You have to be very careful not to break the Electrodes which there in your spinal cannel.I have run out of room to write so if you need help email me ok Liz. All the best.

  4. well im not a doctor but all i can say is prayer and time is the biggest healer, i suffer from ankylosing spondilitis from the past 10 years,im 25 today, i’ve lived wid pain, limped with pain but i live life wid no regrets, my problem is getting worser day by day but hope is wat keeps me alive, my knee,my ankles, my shoulders, my chest, my neck and my back and also my eyes have been affected, so u can imagine how i live, but 1 fine day GOD will help.JUST DONT LOOSE UR FAITH.

  5. Hi Melanie
    You sound like you’re at breaking point.
    I have had LPHS for 5 years. I live in the UK, but I’m sure your doctors will have heard of these treatments.
    About two years ago I had an uretic stent fitted which has to be replaced every 6 months. It’s basically a wire with coils at either end which helps open up the ureter and relieve pressure to the kidney. It has really helped my kidney pain but I also have a loin muscle in constant spasm which is a knock-on effect of kidney problems.
    I have a great pain doctor who gives me trigger point injections directly to the muscle which send electric shocks to the nerve endings.
    I take Oxycontin and Oxynorm, which sounds simmilar to you.
    I really hope you get some help soon.
    Good luck!
    Rachel x

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