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Stmll
Regular Member


Date Joined Apr 2007
Total Posts : 106
   Posted 4/20/2008 6:42 AM (GMT -7)   
Hi Everyone,
 
 I hope everyone is doing as well as can be, sorry I have not been on here ina while I was not doing very well sleeping 20 hrs a day and ust feeling terrible, I found a new Dr to help me ith my LPHS and he is wonderful, great guy, he had me on 200 mgs of Fentanyl and hydromorphine for BT pain along with some other meds, well my girlfriend kept bugging me to go to a homeopatic, and after sleeping my life away I thought why not, not that I ever believed in that stuff, I always thought if you are sick you go to the dr and they fix you not take natural stuff, anyway to my delight it did start working I came down off my meds as Iknew I did not need to be on that strength anymore and she gave me stuff foe withdrawls and I experienced none thank god, I am ow off all the morephine sand I am on 100 mgs of fentanyl which we are going to try and lower to 75 in a cpl weeks, Percocet for Bt pain and about 6 bottles of stuff from the Homeopatic, I am only sleeping 7-8 hrs a night now have so much more energy and was finally approved for Disability, not to say I am totally healed which I am not I still have some pain in my kidney, minor some times major, but for me I feel better then I have in ages, I can actually do stuff with my kids again, and I am not sleeping my life awat at the age of 34, I was reading some posts on others with LPHS and I would love to get in touch again,  I may not reply right away as I am not on my computer much anymore, and for everyone else I hope you all have a wonderful day,and feel good.
 
Tracey from Ontario 
100mgs of Fentanyl
Percocet for Bt Pain
Homeopathic Meds
37.5 mgs of Efexeron

Porteyoz
Regular Member


Date Joined Apr 2008
Total Posts : 33
   Posted 4/21/2008 9:57 AM (GMT -7)   
Hi, I've been meaning to say "hi" to you...just having a lot of problems myself the last couple of days! I too have (undiagnosed LPHS) but have chronic and sometimes debilitating "spasm attaks" of my left kidney (always the left-nothing on the right)*only 1 stone last year on right (which was unusual-that they had to take out with surg-no afteraffects-no pain on right) my left however has "moderate hydroureter/moderate hydronephritis"anyway, they are swollen with a possible "distal stone"...my urologist said "no stone-I don't see any problems" I feel like he is just "blowing me off" since I'm already seeing a pain dr for meds...I think I need a 2nd opinion...and a bx for LPHS. I always have gross/micro hematuria and chronic flank pain (sometimes spasms) does this sound like it? or is it due to "2.9 cm cyst in Medullary region of left kidney causing hydroureter, etc? doesn't this sound like "somethings wrong"???? I take Norco 10/325 (no more than 6/day allowed) but pain dr wants to switch to something "long-acting" since this is going to be a long-term pain situation (this has been going on since 99) what meds do you take? eyes

Stmll
Regular Member


Date Joined Apr 2007
Total Posts : 106
   Posted 4/25/2008 8:13 AM (GMT -7)   
HI sorry to hear about your pain, I knw LPHS is the worse pain I have ever felt, I was on 200 mgs of Fentanyl evry 3 days, Htdromorphine, Morphine, effexor, but like I said I have started seeing a homeopathic and what ever she is doing seems too work, I am now on 100 mgs of fentanyl, and no morephine anymore just percocet for BT pain, I have an amazing Dr's which really really help I think that is why I was disabilty through old age pension the first time, they really help with y pain and if I take a few extra meds through out the month he does not care because he knows I don't take them for fun real trust there, anyway I find that you need a long acting pain med,to   and my pain started out of the blue one day and it just got progressivly worse, if you want  to e-mail me directly feel free to and I can explain or answer any questions that i can answer for you..
 
Take Care
Tracey
DX; Loin Pain Hematuria Syndrome, A Very Rare Painful Kidney Disease,No Cure for this disease at this time, only thing is to Control Pain,
RX, Fentanyl Patch,Amitriplyne, Morphine 


cyndilphs
Regular Member


Date Joined Nov 2006
Total Posts : 26
   Posted 4/25/2008 9:50 PM (GMT -7)   

Tracey,

I hope that you find my other post and I am so glad to here from yourself and others again regarding LPHS. I do not know if it is yourself or another who post here that has LPHS and Lupus also. If it is not yourself I hope that whoever it is will join back in our posts regarding this painful disease. I must say again I am so happy to hear that holistic meds have been able to help you feel better and reduce your pain meds. However, I have to ask the question of you if lowering your continuous medication has been beneficial for you? I have found through many years of trials that this is one thing that I can not do. I have found that the trick to staying out of pain, which is actually is just being able to survive a day through, is keeping a good continuous medication going. Thus, having the pain pump and the fentynal patches.

I am hoping that you can post back and see if their is a way to band together to and discuss LPHS!

Hugs,

Cyndi

 

 

 

 


Stmll
Regular Member


Date Joined Apr 2007
Total Posts : 106
   Posted 4/29/2008 6:09 AM (GMT -7)   

Hi Cyndi

Yes I would like to have a chat with everyone that has LHS as we are few in numbers and anyone thinking that this is what they have ,any info helps, I still take 100 mgs of Fentanyl and the Percocet for BT pain, I am finding that most days are tollerable, I am very worried about being on the fentanyl, scares the crap out of me, they were just recalled again in Feb, as I am sure you know, some days I am still in bed not able too move and that is when I take the back up of hydromorphine, and I am unable to work, just got approved through the canada pension plan for disabilty first time applying, thank god!!!but honestly since I have started the homeopathic meds I have been doing alot better, instead of sleeping 20hrs a day, and not being able too do anything or go anywhere, I am slowly regaining some independence and able to go to the grocery store by myself...lol..I look forward to hearing from you and hope this message finds you well...

Take Care

Tracey


DX; Loin Pain Hematuria Syndrome, A Very Rare Painful Kidney Disease,No Cure for this disease at this time, only thing is to Control Pain,
RX, Fentanyl Patch,Amitriplyne, Morphine 

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