Kim Hughes
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1#
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Rank:none
Score:177
Posts:177
Registered:01/06/2003
Time spent: 0 hours
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(Date Posted:16/09/2006 08:11:31)
Reply to : ckinpain
I am located in Va in the US-- I have been suffering with right kidney pain for over 5 years and have had the worst time trying to get some answers and help- I cannot live like this any longer-- My pain started about a yr after my first kidney stone was removed- I have had other stones since then and still have a few in my left side-- I have always had small amounts of blood in my urine every time it has been tested for the last 5 yrs- I have been to 4 urologist - an orthopedic and was told to see a neurologist-- I have been made to feel that I am imagining the pain and that the only pain I should have would be when I pass a stone-- I was finally referred to a nephrologist that told me she thinks that I have loin pain hematuria syndrome. I have been seeing her for over a yr and half and nothing is being done for me-- I am still in constant pain- She has put me
Hi Connie,
I am sorry you are having such a difficult time. If your nephrologist is sure that you have LPHS there is really nothing that can be done except managing the pain associated with this disease. That being said, she should refer you to a pain management specialist and preferably someone who knows about LPHS. It may be the case that your nephrologist is not comfortable prescribing adequate medication for the relief of your pain, so that is where a pain management doctor can help.
It would be better for her to refer you but if that is not possible then go yourself. Don't be surprised if they want a psych consult...it has happened to all of us. This doesn't mean they think it is all in your head, so don't take offense. First, they need to screen out drug seekers, but second, dealing with this level of pain for a long time can have psychological effects. Depression can be a problem for most of us but this doesn't mean the depression is causing your pain, but the pain may be causing some depression.
LPHS can be difficult to treat and difficult to manage. Some of the things I do to manage (along with my drug cocktail) is use a heating pad, avoid soft drinks and caffeine and avoid strenuous activity. These things don't eliminate my pain but the combination does help.
So, try asking your doctor for a referral to a pain clinic but don't wait until your next appointment with her. Sometimes it takes awhile to get in, but having your nephrologist refer you should take some of the wait-time away.
Good luck, Connie. My prayers are with you.
Kim
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John01
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2#
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Rank:none
Score:377
Posts:377
Registered:07/10/2002
Time spent: 7701 hours
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(Date Posted:20/09/2006 08:29:08)
Hi Connie,
I agree with Kim, get yourself a good pain specialist and whilst it may be some time, they will work out a regime of treatment for you which may combine a series of meds which will work for you.
We can't be more specific because every patient is different and what works for some, may not help others.
Take a look at our website which contains more information about Meds etc by clicking on the Bold Title at the top of each page of this site.
John
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If you have had several good ideas today; keep quiet about them. Someone might steal them.
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Alison Banister
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3#
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Rank:none
Score:68
Posts:68
Registered:04/10/2004
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(Date Posted:11/10/2006 17:43:29)
Hi. the others have given you good advice & i would just add to ask for a lying & STANDING kidney Xray with dye (Intravenous Urogram or Intravenous Pyelogram - same things) as LPHS can be confused with a condition called nephroptosis & one can cause the other. nephroptosis means a kidney that moves too much & the result is severe kidney pain & renal colic.
Most tests are done lying down & this condition only shows standing up. There is research showing that a hypermobile kidney can cause LPHS. Both conditions were disparaged 50 years ago, hence why we get treated as if it's in our heads. Like the others said we have all been there but hold on to the real you. Opiates can work well for kidney pain & huge amounts are sometimes required. As John said we all take different combinatiions & it's a question of finding what works for you. I take Oxycodone in slow & fast release tablet forms & Diamorphine by injection for breakthrough pain.
Of all the complementary therapies I have found that Physio & Mctimmoney Chiropractice work best for the associated muscle spasm & a foot massage is wonderful for release of natural endorphines. Homeopathy has worked well for pain relief & Spiritual healing once gave me 3 months of no pain & it was free! Try anything you can but I appreciate that it all costs money & I am in England where at least medication is subsidised.
Please email me if you need any more tips on coping with the pain.
Alison
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Alison
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Erinx
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4#
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Rank:none
Score:1
Posts:1
Registered:19/10/2006
Time spent: 0 hours
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(Date Posted:19/10/2006 02:04:12)
hi all, my name is erin, and im fifteen and from newzealand. iv been suffering from LPHS for almost 2 years now. the longest two years ever.
so this is whats been happening lately;
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my pain has gotten worse over the last 2 months. i am now on 100mgs+ morphiene daily, along with panadol every six hours and maxalon/cyclazine for nausea. I'm also trying out voltaren 100mg supositorys at night aswell and 10mg of amitriptiline.
on the 21st of august i went to hospital (privatly - the public system here is utter crap) for a camera to be put up into my kidney to have a look, apparntly that was done easily. but my surgen -Mark Froundorfer found lots of blood clots in my kidney. After having that procedure, i was in alot more pain then normal. Fraundorfer then found that when my clots pass its like a kidney stone. he told me to go home and rest and the pain should settle down in a few days.
So a few days later (thursday 24th Aug), it hadnt settled down, i was passing alot of blood, so my mum took me up to the emergency room were i was given IV morphiene and odanzatron for nausea (sp?) i was admitted to hospital. by sunday the 27th the pain still hadnt settled down - i would have these awful attacks, were i couldnt move i would vomit as the pain was so horribly intense, so the urgologist decided to insert a right JJ stent in hope that it would hold open my ureter and let the blood clots pass with ease. all went well, the pain started to settle down abit. at this point they had started me on oxycontin (12hour morphiene). i was discharged from hospital on the 5th of august - 12days after being admitted- with a urine infection.
i was back in hospital on the 6th/8. the next day as i reacted to the oxycontin and had to have fluids. i was allowed home on the same day with different medicine. i was going to the gp almost daily after that as the infection didnt settle down.
now i am seeing DR Jon Cadwallder up in auckland who also has a paitent with LPHS - the only other known case in NZ, i have also had my stent removed as it wasnt helping.
iv been feeling awful since all that happened, and was in hospital 2days ago for pain relif, sometimes IV morphiene is all that helps.
its so fusterating, as some people just think i want drugs and that it is all in my head. it can get really depressing at times.
its really hard to find a pain specialist here in NZ. i saw one but he told me that it was all in my head and to take panadol and go for walks - useless ******! i wish he had this problem.
i was also wondering, does the oral contreceptive pill affect LPHS?
i am also booked in to see a renal specialist this thursday. i hope he has more ideas.
dr herbert has a clinic in Ohio in the US. would anyone have an email or contact address for him?
any information at all would be much apprecitated.
thanks.
erin |
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John01
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5#
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Rank:none
Score:377
Posts:377
Registered:07/10/2002
Time spent: 7701 hours
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(Date Posted:24/10/2006 14:02:02)
Hi Erin,
For further info on LPHS gp to our website which can be reached by clicking on the Title at the top of each page as this carries a lot more info than the Forum.
John
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If you have had several good ideas today; keep quiet about them. Someone might steal them.
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Kim Hughes
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6#
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Rank:none
Score:177
Posts:177
Registered:01/06/2003
Time spent: 0 hours
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(Date Posted:03/11/2006 00:20:25)
Reply to : Erinx
was also wondering, does the oral contreceptive pill affect LPHS?
Many years ago it was believed that oral contraceptives were a trigger for LPHS since it was diagnosed mainly in young women taking the drugs. Some doctors still believe that. Since pre-pubescent boys and girls, as well as men, have been diagnosed there must be other factors involved. Most doctors believe that since oral contraceptives can cause blood clots in other areas of the body, they can aggravate LPHS.
My personal experience is oral contraceptives make my kidney pain much worse. I took them in the mid-1980s when the amount of progesterone and estrogen in the drugs were much higher. If you want to use them I'd try the lowest dose possible or perhaps try one of the skin patches that contain even lower doses. Now that I am in perimenopause taking hormone replacement therapy causes the same problems. You have to decide if the benefit is worth the extra pain. Of course, you may be lucky and be unaffected by them.
As for Dr. Hebert, I don't want to print his information here on the forum. You can find him at http://medicalcenter.osu.edu/patientcare/findadoctor/best/ He was listed as one ot the best doctors in the USA. He is in the nephrology department. It is always best to have your doctor contact another doctor. You'll get further, faster.
Good luck,
Kim
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Denise56
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7#
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Registered:17/02/2007
Time spent: 0 hours
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(Date Posted:18/02/2007 10:58:20)
I have just been diagnosed with Loin Pain Haemuturia syndrome I am from Australia and my doctors have been fantastic. My urologist sent me to 3 other doctors to be diagnosed and all came back with the same diagnosis. I have now been refered to a Pain management Doctor. Can anyone tell me of any treatments and drugs that help I am currently on 100mg morphine a day and 20-30 mg of Endone. All make me drowsy and sometimes do nothing for the pain. I have been told to try and work as long as possible. What is the long term prognosis.
Denise
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Alison Banister
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8#
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Rank:none
Score:68
Posts:68
Registered:04/10/2004
Time spent: 0 hours
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(Date Posted:21/02/2007 17:16:04)
Reply to : Denise56
I have just been diagnosed with Loin Pain Haemuturia syndrome I am from Australia and my doctors have been fantastic. My urologist sent me to 3 other doctors to be diagnosed and all came back with the same diagnosis. I have now been refered to a Pain management Doctor. Can anyone tell me of any treatments and drugs that help I am currently on 100mg morphine a day and 20-30 mg of Endone. All make me drowsy and sometimes do nothing for the pain. I have been told to try and work as long as possible. What is the long term prognosis.Denise
Dear Denise,
I am so sorry to hear of your diagnosis although it may be a relief. Dr. Ahmed Ghanem who has done research in Saudi & is now working at king's Lynn hospital as a consultant urologist says that in his experience Diamorphine (Heroin) is the best pain relief for kidney pain & colic. He has been a huge support to me via email & even came to oversee my operation!. I tried all of the opiates & found diamorphine worked better than morphine (its 3 times stronger) & oxycodone is twice as strong (see drug books) but each person responds differently. In the end often nothing took the pain away but heat, distraction, moving about, positive mindset etc (see my article on www. kidney.org.uk & click on perceptons for more tips). I also have a powerpoint presentation that was presented at the National kidney Conference. If you would like me to send it please let me know.
Please check that you have had a lying & standing kidney Xray with dye as I was mis-diagnosed with LPHS for 5 years & in fact my kidneys moved too much. They are now stitched in place. Dr. Ahmed's reaearch shows that hypermobile kidneys can lead on to LPHS but if picked up (they are not diagnosed as all tests are done lying down) stictching the kidneys in place can prevent LPHS developing & has cured the kidney pain in most of his patients.
I always believed I would find a cure & I'm still recovering from surgery but getting there.
Alison
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Alison
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kashume
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9#
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Rank:none
Score:19
Posts:19
Registered:21/12/2004
Time spent: 0 hours
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(Date Posted:22/02/2007 13:00:56)
hi folks,
i just wanted to let you all know about a new medication i have been taking... it is called duloxetine...it is an antidepressant...i have been on this for about 4 weeks now and have had amazing results...my pain has more than halved and i am not taking as much pain relief...i know it is too early in the treatment to be so excited about it but this is by far the best result i have ever had....the only 2 side effects i have are a dry mouth and feeling tired...my doc says that these are the best results he has seen so far and i am not even on a strong dose...this medicine has only been available in the uk for about 2 years...
karen xxx
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Alison Banister
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10#
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Rank:none
Score:68
Posts:68
Registered:04/10/2004
Time spent: 0 hours
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(Date Posted:22/02/2007 15:09:53)
That's wonderful news. I am very pleased for you.
Alison
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Alison
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Kim Hughes
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11#
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Rank:none
Score:177
Posts:177
Registered:01/06/2003
Time spent: 0 hours
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(Date Posted:24/02/2007 04:13:05)
Reply to : kashume
hi folks,i just wanted to let you all know about a new medication i have been taking... it is called duloxetine...it is an antidepressant...i have been on this for about 4 weeks now and have had amazing results...my pain has more than halved and i am not taking as much pain relief...i know it is too early in the treatment to be so excited about it but this is by far the best result i have ever had....the only 2 side effects i have are a dry mouth and feeling tired...my doc says that these are the best results he has seen so far and i am not even on a strong dose...this medicine has only been available in the uk for about 2 years...karen xxx
Anti-depressants can and do help people with LPHS. It doesn't lower the pain but changes your response to the pain. The pain is not as distressing which makes life better. I have been on one for almost 7 years and it has helped tremendously. People, and doctors, need to realize that it is the pain that causes the depression, not the depressions causing the pain. While the antidepressant didn't take away my pain it has certainly made my life better and that is the whole point of any treatment.
I would caution anyone who suffers with dry mouth from the antidepressant, or any other drug, to speak with their dentist. Dry mouth can wreak havoc on your teeth and gums, leading to tooth decay and gingivitis.
Karen, I hope you continue to get good relief from your medication!
Kim
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Erinx
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12#
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Rank:none
Score:1
Posts:1
Registered:19/10/2006
Time spent: 0 hours
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(Date Posted:06/03/2007 03:46:48)
hello,
just here for an update, i tryed this medicine called gabapentin, but it didnt work, and now iv been vomiting for a week.
i feel awful. my pain is about 10x worse then before. i feel so low. so now i take antidepressants ontop of everything else. my morphiene injection i now react to. so when it gets bad i have pethadine. ugh. im so sick of the pain & all the side effects from medicine. i just want my life to go back to normal
i hope you all are doing well,
erin
xx
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fixmypain
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13#
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Registered:30/07/2003
Time spent: 0 hours
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(Date Posted:15/03/2007 06:54:59)
Hi everyone, I`ve been away for a good while and well its good to be back. Been kind of catching up on some of the posts.
Seems our little group is still growing and that's good and bad, Good in that you`ve found other really good people on here
and your not alone or crazy!! But bad in that more and more people are suffering from this terrible disease.
I could write all night about whats happened to me and my family,but i wont. Lets just say its been a rotten past 6 months!
But I'm back online and looking forward to chatting with my old friends and make some new ones I hope. I use to think about life as
one day at a time but anymore its one hour at a time and I'm sure everybody knows what i mean. Well just wanted to say hi and im
back! Wishing everybody many pain free days and your all in my prayers, Keep up the good work John this group is a inspiration.
Bye for now, Craig
(fixmypain)
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kashume
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14#
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Rank:none
Score:19
Posts:19
Registered:21/12/2004
Time spent: 0 hours
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(Date Posted:15/03/2007 10:00:30)
hi peeps,
just thought id update you all on my new med duloxetine..... its now been 9 weeks and i am still not having my usual amount of pain... for the last 9 weeks the strongest pain relief i have had is co-codamol... i am hoping this continues...
i hope that you all manage to find some decent pain relief too....wishing you all the best
karen
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tc62
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15#
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Rank:none
Score:14
Posts:14
Registered:18/05/2003
Time spent: 0 hours
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(Date Posted:15/06/2007 21:41:55)
Dear ckinpain, it is very difficult to get your head around this condition, but you can learn to cope once you find supportive medical staff. In some ways I have been luckier than others as I have had renal disease all my life, lost one kidney, had countless bladder operations and am now in stage 4 renal failure, so the lphs is the icing on the cake! but at least I'm taken seriously which sometimes doesnt happen with sufferers. Get a good pain specialist, mine has transformed my life. I take fentanyl in patch form (50ug) and oxycodone hydrochloride and cocodomol on top for breakthrough pain, this seems to be a good combination with antihypertensives so even though I usually end up in bed for a few hours every day, take countless hot baths, I do feel less down than before. Take each day as a new challenge, do things to make yourself happy, and know your limits! Unable to work now, I find it helps to start a new hobby, mine is art...do something that makes you smile, and reminds you that you are a special person. I keep the following in my diary and look at it if i'm down...' courage does not always roar, sometimes it is the quiet voice at the end of the day saying, I will try again tomorrow'
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