Most Helpful Treatments

For most of my years with Loin Pain Hematuria I kept ending up in the hospital because of uncontrolled pain. I was probably prescribed every narcotic possible … tried many different types both pills and patches. It was not until my regional hospital started a subcutanous IV lidocaine pain program , combined with methadone that I finally found life manageable three years ago. Lidocaine is used to treat many different types of pain. Every person is different. Some can stop using narcotics, others can reduce their amounts. For me it meant that I stopped using short-acting narcotics on a regular basis, instead only an infrequent as need basis. I am on 18mg of methadone. I was on 1080ml of lidocaine. I have been able to raise my 3 children. But ….. chronic pain is always a series of trade offs.

My hair has started to fall out and in the past 18 months I have been exhausted. The exhaustion is deep and debilitating. I have been working with my family doctor, naturopath, pharmacists, nurses at the pain program, ob/gyn, and dermatologist to figure out any answers. But my own research has proved to be very important. I have learned that lidocaine is being researched in cancer studies. It is an EGFR inhibitor. This is the same type of drug used in chemotherapy that causes hair loss. It works on very basic cellular production. Then I found out that methadone is more effective than other narcotics because it works on all 3 pain receptors, rather than just 2 two. But it will cause chronic adrenal fatigue, hence the exhaustion. Working with my naturopath, hopefully I can feel healthier again with supplements, nutrition and reductions in Rx dosages It is very important to use the Internet to research all medication recommended to you.

LPHS Journey

I am 47. My first signs of a problem was at age 19 with high blood pressure. Then at age 27 with blood in my urine thru-out my pregnancy. Next at age 33 at conception of my third pregnancy with a very dangerous bacterial strep infection and pain mostly in my back. Then at age 37 I had to have emergency surgery; my kidneys could not handle it. I got a kidney infection. And then all kinds of pain and blood in my urine. My blood pressure was out of control. A ureter stent was put in, but something went wrong because it caused agonizing pain. It was taken out. I required more surgery that found shards of the stent in my ureter. That relieved some acute pain, but I still had kidney pain and blood in urine. By the time I was dealing with the shards of the stent about 20 months of agonizing pain had occurred – I was ready to die. The only thing that stopped me was my three children. My mind could resolve that my husband would want me at peace, but I could not reconcile how my children could live without me. As I researched suicide methods I found 1 website for LPHS & a friendly voice in Ohio helped me. She connected me to doctors at Ohio State University. I also went to a teaching hospital in the largest city in my province. (Canada) The teaching hospital was a smart idea! This type of hospital loves hard to figure out medical problems. I finally got good care & thorough diagnosis + start of a pain management plan. I also went to Cleveland Clinic in Ohio because it is considered the #1 Urology & Nephrology Centre in the US. It cost $5000, but was worth it. When we add up all lost wages in/out of Cdn hospitals with out diagnosis, this was cheap. Now there is more knowledge about LPHS.

If my life was a hockey game, I’d have a hat trick!

I was diagnosed with systemic Lupus and Fibromyalgia in Aug. 2000. I already had scoliosis, but never had any problems as a result of it, up until I was having Lupus related problems. Lucky for me, I lived as a military spouse on one of the best medical military posts in the world. The military had no reason to make me continue coming g to the office for ‘follow Suppo appointments, or running all kinds of UN necessary tests, at which the general public doctors are in my opinion,guilty of doing. So it took them only 9 weeks to diagnose mewith the symptoms I was having.

I was sick and had ‘flair ups’ for 5 years. I am very blessed, and ay times actually forget my ‘chronic’ conditions.

The hat trick comes in June of 2011. I was on a family fishing trip on a charter fishing g boat. When trip was over, I was disembarking the boat when my foot hit the ramp, it was wet and I went flying. Immediately my foot was purple! I kept repeating ‘I broke my foot’. The pain wasn’t immediate. I was embarrassed, and jumped up like I was OK.

That night, the throbbing and pain was horrible.

I went to my orthopedic the next a.m. not broke!! How could it hurt so bad?

Months went by, I continued to work because after all ‘it was only a sprain’. I made decision to go to a different doctor when my orthopedic seemed disappointed that he wasn’t going to be doing surgery on a broken leg. I ended up having surgery for torn meniscus. But only after being told I have RSD. Before she could do the surgery, I had to start spinal blocks. Since the day I was diagnosed with RSD, I have gone through denial, depression, anxiety, anger, resentment, confusion, etc.

I have heard ‘well maybe if you get up and move around’ so many times I could scream!

There are days that my foot/ankle look fine, yet I’m in pain. People always say,’well at least its not swollen’ yet I wish it was so I at least had something to show for the inner pain that I’m in!

As I lay here with my leg elevated, my foot is purple and ICE cold to the touch, yet its on fire!!

I wish I could get my family to understand, I may look OK, yet I’m dying inside. Every day I wonder, ‘where will this RSD take me?’ Why is it that I have 3 chronic conditions, with no cure? What can I do to change my situation? Do I want to live my life with this stopping me from doing the things I enjoy?

The depression at times sets in and I feel sorry for myself. My life flashes in front of me, what have I done to deserve all this?

I wonder what its like to be someone else. To live life healthy, happy and free from pain. I realized today, I have lived almost my entire life in pain. Mostly physical, which ends up emotional pain.

I tell myself, this to shall pass……but will it?

Why do I have so many chronic conditions?

For years I had different symptoms, illnesses etc. I was told I was ‘it was just in my mind’. Although I knew it wasn’t and I had legitimate illnesses, I started to wonder myself ‘maybe I’m going crazy?’

In Aug. 2000, my than husband was stationed at Fort Bragg N.C.

My daughter(13) at the time and myself were living there by ourselves, far from any family. My husband was in Missouri, and I had no one to turn to but myself and God.

I will never forget the day… I had been having so much pain in my entire body,radiating in my back. I couldn’t state awake, yet I couldn’t state asleep either. I would be driving my daughter and I, and have blackouts. Would wake up driving, not no how I got there. My daughter Chelsea had no ideal would call my mother who lives in Floryida several times a day. Acting each time like all was well.

Than came the day, I had so many tests run, blood taken, MRI’s, cat scans etc. I got the call telling me I have systemic Lupus and Fibromyalgia. What in the world ate those? I said. I was Tod to clear in and we would discuss my options.

I immediately called my mom in Florida and went and picked my daughter up from school. I thought,’maybe I will just leave and go back home,and everything would be ok’.

My wonderful mother made the decision to come to Bragg for few weeks. I again, put on that I was OK.
I was pretty much bed ridden for 2 months, was on a lot of steroids, pain meds etc. Felt defeated. Went through bouts of depression.

Second guessed my doctors diagnosis, but couldn’t figure out why I was feeling so aweful.I finally stopped fighting my emotions of the stigma of having a chronic condition.

As the years have passed, I have had my ups and Downs. I have been mostly good.However when I do have flair ups,there bad. I have to physically and emotionally come to grips with letting it run its coarse. ‘This to shall pass’. Its been my experience that the emotional is at times, much worse than the physical.

In June 2011, I fell on a boat, jury my knee and ankle. After months of MRI’s, etc. I ended up with yet another chronic condition RSD!!

I have decided that life could be worse, I could have terminal cancer, brain tumor, heart attack, stroke… My attitude is a direct reflection of how I feel and I have to always remember, it could be worse :)

LPHS and Endometriosis

Yesterday I was diagnosed with LPHS as a 28 year old female. In 2007 I was also diagnosed with endometriosis and have since had 4 surgeries to remove nerves and the endometriosis that has grown rapid in the right side of my body. I always had kidney pain, on the right side, that I just figured was pain that radiated due to the endo. However, after having had another surgery in October, I ended up back in the hospital with severe kidney pain. Again no stones or signs of a UTI, so the easy answer for my doctors was to blame the endo, put me on meds and send me home. This time the pain has gotten worse and even the medications are useless. I just got back to work from having been on leave and I was in tears yesterday from all the pain in my back. I finally went back to my primary doctor who also specializes in neuphrology and due to my urine cultures and symptoms was diagnosed with LPHS. My question to him was, what do I do? The look on his face was very alarming as there isn’t much to be done. He knew of some patients that were placed on ACE inhibiters but my blood pressure is super low so I’m not eligible for such option. I’m looking for guidance as I want to know if anyone else has the combination of LPHS and Endometriosis (Stage 4). Also, suggestions on what to do and how to make my quality of life better. I’ve been on narcotics before for the severe endo pain and I really don’t want to go down that same road. I feel as though my pain reacts to nothing, so why bother being on something when I’m going to be in pain anyways. I’m also scared that since I’ve been in the hospital so many times I may be labeled a “drug seeker” as when I enter the first thing they do is give me dialudid through the iv to try and take the edge off, which is prob the only thing that helps but I can’t live on that! AND the iv works but when I took the meds, it helped very little and keep in mind this is extremely heavy narcotics. I’ve also gained 40 lbs in the last year, I was very skinny to begin with, but both diseases have made me feel self concious and I barely eat because I’m so very nauseated. I feel I’m way too young to give up. I’ve dealt with the endo and will deal with this just as well. I’m just at a loss on what to do next, some said (including my doctor) a possible kidney biopsy, pain management, accupuncture, excersie but I’m just exhausted and don’t know how to handle all of this. HELP!

Warm Regards,
J

My 18yr old Son Diagnosed with LPHS

Since he was about 14 years old we have been trying to find out what is wrong with our son. He is now 18 years old and we have finally found out what is wrong. He is an athlete and favorite sport is football. He has been living with this severe, chronic pain for soo long. Many nights i cry myself to sleep with worry. Right now we have not found relief. Ultram will sometimes help with the pain but not always. Our nephrologist is sending us to Dallas to see a doctor with more experience with this syndrome. I can only pray that we have some luck and find a way to end my son’s constant agonizing pain. Any suggestions on dealing with this chronic disorder would be very appreciated.

Just how much a life can change in such a short time

You know, I really have been blessed with a wonderful life, regardless of the bad times. So I am thankful to The Lord 4 everything.:)

After my neck surgery of spinal diskectomy of my C5-C6 with titanium plates and screws(’06), my once busy fun wonderful life began to take a bad turn. It wasn’t real bad, at first, just my right arm burned in the bi-cep muscle, but even the Neurosurgen said that it was my C5.
I knew something was wrong and couldn’t explain exactly what I was feeling and everything seem to move fast and the pain got much worse and it was interrupting my life. I always loved to work because I was raised that way and it was just natural.

The same year of my surgery, I had nerve blocks after seeing the NS 9 out of 11 months.

I had to do something, to try and ease what now had moved into my whole right shoulder. I couldn’t move my right arm and I couldn’t work, sleep and everything began to be so hard to do, because I had to work, I had a good job.

While having the nerve blocks, they did what was called a “wet tap”. It is not a good thing, because it is where they accidentally hit the nerve fibers or get too close around your spinal cord. I was immediately made numb in my hands and feet and still am to this day.
After that, I slowly began to deteriorate and by ’08, I was in such misery, that I actually thought I was dying. I would actually wreath in my mom and dads back seat on the way to either an ER or some doc(Neurologist).

I am just wanting answers like everyone else who is reading this. I am now staying numb on the entire left side of my face everyday and if I get excited, stressed or anything emotional, it gets ten times worse. I have had my whole left side of my body to get paralyzed to where I couldn’t even move it and like a 40lb. weight was layed on top of my arms and legs and they wouldn’t move.

I am scared and should be, for no one is looking at the big picture, just symptoms. The docs just hit the surface and send you on your way to the next doc, I guess for that is what I had to do and still don’t know the answer to what is keeping me in this bed and in pain from muscle cramps, nausea, tremors/spasms and just a wastebasket full of symptoms.

I pray for us all and hope that we discover the culprit of our agony. THE ANSWER to what we can do to get our lives back or as close to normal, as it once was. God Bless always.:)))<3 Karen

Caretakers -Parents Perspective Living with Life in Pain

Several years ago our daughter Sarah began to consistently complain of stomach pain which radiated to her back. Doctors were unable to diagnose it, and eventually dismissed her pain as a teenager’s attempt to get attention from her parents.

Sarah went to several doctors before we found Dr. Henry Rosas. After one careful examination, he found that she had several symptoms that indicated her gallbladder was not working. This confirmed the results of a Hida Scan that had been administered following an emergency appendectomy during Easter a year prior. The scan showed not only that Sarah’s gallbladder was not working but also what looked like a large mass of what might be cancer. When our daughter was taken in for surgery, Dr. Rosas noticed the previous doctor had not sealed an area of her appendix. This had compressed several inches of her small intestines into a large ball. He decompressed the tissue and reattached what should have been done a year prior.

Sarah was fine for a few short months, but gradually her pain began to increase and her blood test showed that she may have an immune deficiency. Dr. Rosas requested for Johns Hopkins to see her, but approval for the appointment was denied by the head of the Autoimmune Disorder/Deficiency Department.. He felt that there was not enough evidence in Sarah’s medical records to warrant an appointment with their world renowned doctor.

Unfortunately, Dr. Rosas died from cancer. Sarah was referred to a female doctor at GBMC, but we were met again with questioning looks and an overall lack of information about the cause of her health issues. She was in an out of the ER so many times, each time with the same pain near her kidney, and yet none of her doctors referred her to a nephrologist. As parents, we were fed up. It made sense to me to send her to a nephrologist, and if her physicians were not going to recommend someone, then I would find one myself.

Our prayers were answered when God sent Dr. Marc Brazie to our rescue. Dr. Brazie was dedicated to Sarah and took the time to understand her, support her and most importantly believe in her. He did his own research, own blood work, own scans, kidney biopsies etc. After examining Sarah’s myriad of symptoms–hematuria in her urine and renal tubes, stabbing pain in both kidneys (she described it “as if many snowflakes were poking around”) passing two kidney stones, and a double biopsy, he diagnosed her with LPHS – Loin Pain Hematuria Syndrome. We were happy for a short while just to know what we had, but the rarity of the disease was overwhelming.

I contacted the Rare Orphans Disease Foundation in Bethesda only to be told there was no research, no funding and no interest in LPHS because there were less than 1,000 patients with this disease. After countless calls, we pleaded with our friends to find a doctor that would be able to lend a hand. Finally, our friend Ellen Potapane told us how their physician, Dr. Kevin Ferentz, had helped her husband, Frank, when he had been diagnosed with a rare form of cancer. At the time of diagnosis, Frank Potapane was a neighbor and good friend of ours. We had joined forces with them during their health crisis and Frank had survived; we were grateful that now they were referring Dr. Ferentz to us in our time of need.

Dr. Ferentz is currently one of the heads of the Department of Family Medicine at the University of Maryland, and has been part of our family now since the beginning of our daughter’s diagnosis. He cares about the individual patient, believes in them and works with the whole family. For the past several years, his team of doctors and students have been learning about this rare disease, and I am thankful that God sent him to us.

Unfortunately, not all students are as eager to research LPHS. Some take the time to learn, while others question the disease because of the lack of information available. While Dr. Ferentz has been amazing through his efforts educating medical students, the bottom line is that students have to be willing to take the time to learn or no progress in LPHS research will be made.

In my mind, a lack of interest is a major problem affecting medicine today. Students and doctors need to take the time to learn and support their patients with sincerity. They need to be less worried about their own credibility and more supportive of their patients themselves. Dr. Kevin Ferentz and Dr. David Stewart are two doctors that truly support their patients. Our hope is that the others will learn by their example.

As happy as we were to finally have caring physicians, Sarah’s medical problems weren’t solved. As a Mom, “no answers” is not a phrase in my vocabulary. “Can’t” doesn’t exist and neither does “there is nothing more we can do”. So instead of sitting around doing nothing, our family held a fundraiser at the Engineers Club in Baltimore. We were fortunate to have many supportive business associates, friends and family to help raise money for the Dept. of Family Medicine – Community Medicine at the University of Maryland. Our hope was that this funding would help the department to fund LPHS research, which in turn would help our daughter. At the time, there was no LPHS research being conducted at the University of Maryland at all.

In the meantime, Sarah was still in and out of the hospital. She had started seeing a pain therapist, Claudia Cameron, an amazing woman that is always there for Sarah. Claudia helped Sarah through her crisis and supported her in spite of some individuals that didn’t believe in her because of the lack of information about LPHS. Through her wonderful support and friendship, Claudia has helped our entire family adjust to Sarah’s illness. Through networking, I also had the good fortune to meet Bella Folksman, an acupuncturist in Owings Mills Maryland who has also been a major part in Sarah’s pain management. Sarah tries to see her once a week…unless she is in the hospital. From a parental perspective, Bella is a hands-on therapist that treats Sarah with an attitude of true sincerity and caring.

We finally did get into Johns Hopkins, and their nephrologist, Dr. Michael Choi, reaffirmed Sarah’s diagnosis. Dr. Choi also said he believed there maybe another underlying illness. While we were at John’s Hopkins, Dr. Choi spent 3 hours with us talking with Sarah. He wrote everything down specifically and in detail. That effort meant so much to us! He even had someone send us a video of a doctor in Montgomery County that is specializing in a program to treat patients with rare diseases that affect 200,000 people or less. Though Sarah did not get into this program, we hope that the National Instituted of Health (NIH) will have other programs and research that correlate with Sarah’s illness and may find a cure.

We are fortunate that we have a great team of several doctors and therapists that look out for Sarah; Dr. Ferentz, Dr. Brazie, Dr. Claudia Cameron, Bella Folksman, Dr. Bruce Greenwald her GI doctor and Dr. Diane Orlinsky her dermatologist. But though they are very heart-centered and caring doctors, they still don’t have the cure for her illness. We have tried everything we can think of to help Sarah: alternative medicine, contacting friends such as Adele Linsalata, Tracey Hutchins, Shari Sternberger, Kyle Brooks, Tina York – Chaplain, prayers from every denomination you can imagine all in the hopes of helping Sarah and others like her to find a cure or help her manage her pain so she can have a life.

As a parent, the most difficult area is watching your child in pain and finding that there is no cure. As parents, we have been told we are here to protect, reassure and take care of our children. To keep them from all pain, surround them with love and help them to grow into adults. To find their dreams, help them turn those dreams into reality and see it all blossom before our eyes. Though we have seen Sarah try on several occasions to fulfill her own dream of becoming a nurse, thus far it has been diminished. For a time, she was attending Medix School, located in Towson, but they had to take away her admission because of her illness. We are told we still have to pay for her admission even though she is no longer there. The school’s hope is that she will return to classes when she is able. In my heart, Sarah’s ordeal will make her very valuable nurse for any doctor, hospital and patient. She has seen good, bad and horrible nurses, doctors and staff. She has held it together and dealt with illness in a mature fashion by learning grow in her situation.

Sarah tries to understand her illness from both sides of the spectrum, which is something I am not sure many patients have done. I think some of the doctors and nurses that see her appreciate her efforts, though as a parent I will say that sometimes it is very difficult to watch. There are several quotes I share with Sarah: “Never take No for an answer”, “Live Life with a Purpose” “You can reach your dreams” “We are all here for a reason and your journey is going to help you and so many others” Sometimes she can listen and believe in these quotes too, but other times, I can tell that she is so angry because her disease is holding her back from whatever she wants to do in life. As parents, it’s difficult to see others (neighbors, friends, family, business associates) with children around the same age as our daughter. It is hard to celebrate with them on their momentous occasions; graduation, weddings, births and so much more.

I will not lie and say there have not been tears. There have been tears, screaming, anger and more…but then we try to regroup and understand that there are times that are amazing, even if they are just a few hours here and there when we can be an average normal family.

As parents, our job is to keep HOPE alive, as difficult as it can be, and to continue trying to always find one silver lining that can give hope to our daughter and all those suffering with this very painful disease.

My own hope is that by putting this book together, someone out there that will use it as a resource. Someone will gain a greater understanding about rare diseases and understand that those suffering from them are patients, not numbers. I hope that people will see that there are people with feelings; caring doctors and researchers who are not looking for the almighty dollar but who look at these patients and believe they may have the answer to help! And that patients around the world can have the support of family, friends and the medical system to care enough to help them and so many other patients that suffer with rare diseases affecting 1,000 people or less. That people will take the time to CARE! That the families of patients dealing with rare diseases will be helped, because these diseases affect the entire family — the aunts, uncles, cousins, everyone! If you allow it, disease can tear the family apart. But, if you hold steadfast and are hopeful and loving to the patient, (in our case, our daughter) a bond can be formed that cannot be broken. And that is what family is all about—UNITY!

It is with my heartfelt gratitude that I thank you for helping. Thank you for reading this book and supporting those with LPHS – Loin Pain Hematuria Syndrome. Please join with us in trying to find a cure, start research, and help so many patients and their families in need with this rare and life-altering disease/syndrome/affliction.

Thank you from the bottom of our MANY HEARTS!
Tammy, Jeff, Sarah, Josh and Zach – Maryland

Epidural injections for me

my dr recently suggested the epidural injections for me. i have herniated disk in my cervical spine in my c5 and c6. i agreed and last week was my first one. was in quit a bit of pain and called up there and they called me in 15 7.5s to help me along. well i had to go back one week later which was this thursday and this time it hurt me much worse. they next day i was so miserable and i called to have them call me in a few more just to help me along for a couple of days and they said no that they were procedure drs only and that one script was a one time thing. i had to end up going to hospital and getting a pain shot. i felt much better afterwards and this morning is a lot better than the last few days. do these injections really help and are they really worth it? im still not happy with the dr cause i feel like if im miserable then they should prescribe something to help me for a few days. i guess everyone who goes in there pill seeking so much has ruined it for the ones who do not abuse the medicine. sorry guys just venting some. when will i start really feeling better?

Between Neuro-surgeon and Orthopaedic-surgeon who to consult with for chronic back pain.

I fell down the stairs while pregnant in 1996. In 2001 I started having lower back pain going down my right leg. MRI showed mild bulging L5, SI. I was treated with epidural injection and tractions. The pain went away immediately after months of agony. I was pain free until last year, 2010 Aug. This time the pain is in my lower back, hip, coccyx, butt, down the leg. I am doing Biokinetics since from June 2011 and not sure if they are working. Is it true that the second epidural injection won’t work? Do I seek help with Neuro sergeon or orthopaedic sergeon?