I’m a lucky one with LPHS

I wanted to write my story here, but it is super long so you will get the abbreviated version! I have had LPHS for almost 20 years. I have been to hell and back. I lost my friends and some of my family, my fiancee, and my career. If it weren’t for my parents, I probably wouldn’t be here today. I want everyone to know that there is hope, and I am proof of that.

When I was diagnosed, the treatment for LPHS was auto transplantation. With a 10% success rate, I said no thank you. I was then shuffled from pain clinic to pain clinic, because the docs said they couldn’t help me, most just looked at me like I was a drug seeker. My nephrologist was in Ohio, but I live elsewhere in the Midwest. I have taken every narcotic that you can take, not to mention all the other medications that doctors prescribed off-label. I also had many procedures (ultrasounds, CT scans, IVP’s, cystoscopies and a kidney biopsy that positively identified the LPHS). Then there was the numerous experimental procedures.

I was at my last hope of having a pain pump implanted, when my nephrologist suggested I see their pain doctor for a procedure called Pulsed Radiofrequency Ablation (PRFA). I went for the consult, and the doctor said I was a candidate for the PRFA, but not to get my hopes up. I was the sixth person with LPHS to have this done, and the results of the other five were not good. And of course being experimental, my insurance company did not pay for the PRFA. I didn’t care, I needed it done. Made a payment plan with the hospital, and had it done. My doctor said that it would be a success if it lasted 3 months and I could get off of 75% of my medications.

The PRFA lasted for 9 and a half months and I got off of 95% of my meds! I was thrilled! The good news is that the PRFA can be repeated. The bad news, is that you don’t know if it will work again. I had it repeated, and it has lasted 7 and a half years. Yes, I said YEARS! I am completely pain free in my kidney. I’m one that passes a lot of blood clots. I do have pain when the clot is moving down the ureter into the bladder and then out of my body. This is why I have to stay on a maintenance dose of morphine, to help when I pass the clots. But the dose is so small compared to what I used to take before I had the PRFA.

My life has completely changed. I now have a husband and a child. I wanted to share my story to let you know that there are options out there. When I was diagnosed almost 20 years ago, there was not many options for treatment.

I am not saying that the PRFA will work for you, but it is an option. All I know is whatever you do, do NOT give up. Keep searching, keep trying and keep your head up. Find what works for you.

A Teen in Pain

My name is Dani Alys and I have been in pain every day of my life.

When I was born I was a regular baby; 8 pounds. Actually pretty heavy, right? Well for the next few months, I did not gain a pound, not even an ounce. I did not grow. I would not stop crying.
We were living in Taiwan at the time and the doctors there are not the best. However, eventually they found a medicine that worked on me. I was still a very fussy baby, but I was finally growing.

Three years later, age three, my family moved to Maryland in the US. The first night of living here I had my first asthma attack. From then on, even until now, I am unable to be active or cold without getting asthma. It has taken me out of several sports that I love and has made me miss innumerable days of school.

Four years later, age seven, we were now living on Long Island. This year was extra rough for me.

At the beginning of the year, I had the biggest asthma attack I had ever had. It landed me in the ER and was absolutely terrifying. I was gasping for breath, unable to get any oxygen into me.
What else happened that year? Oh yeah, the thing that changed my life. Celiac disease. So for my entire life I got huge stomach aches whenever I ate. Eventually we checked it out and I had an endoscopy. This alone was pretty scary for me because I was only seven and I was having tubes stuck onto me all over my body and I was going to be put to sleep.

A few weeks later, they diagnosed me with Celiac disease. In case you don’t know what that is, that means I am allergic to gluten. Meaning no cake, no cookies, no pasta, no bread. It took a while, but I eventually got used to it. Now, as most of you know, “got used to it” does not mean I like it. It does not mean it is not hard. It means I learned how to deal with it. Kinda my life motto right now.

Five years later, age eleven. My asthma was still terrible. But my body decided to give me another eternal problem! Dizziness. I faint every couple months. I black out. I have tunnel vision. My vision goes blurry frequently. Yay, another problem to add to my list.

One year later, age 12. At my school we are forced to do two sports a year. Even though I have asthma, they made me do track. After two weeks I had a large lump on my knee that hurt so much. I was out of track, but my parents wouldn’t take me to the doctor. Finally after almost a month, they took me once I was literally limping everywhere I went. The doctor put me on crutches, and it was supposed to go away in a week. I ended up doing 2 ½ months of crutches. It started to feel a lot better so I did an adventure camp where I went hiking. Then the entire thing started right over again. I tried a gel that was spread on my knee for 15 minutes, 4 times a day. I did a patch sort of thing. I did PT for 2 months. NOTHING worked. To this day, I have to wear a brace everywhere I go because there is no way of fixing it. They said it was called Bursitis or something like that, and that if we surgically removed the fluid in the large lump on my knee that it would come right back.

Three years later, age 15, 9th grade, 2014-2015. Probably the worst year of my life. I’ve had medical problems all of my life, but this was just over the top. In January, I started to have intense stabbing pain in my stomach. I was nauseous whenever I consumed absolutely anything, even water. I was so dizzy that whenever I got up I felt like I was about to collapse. It often felt like everything in my body was being squished into one ball, making me unable to do anything except lay in a ball on my bed. I have huge panic attacks at least once a week. I always have to concentrate on my breathing. I have some sort of infection in my throat that hurts on and off and makes it excruciating to swallow anything. I have massive headaches a couple days a week. I have had diarrhea all my life, but it’s non stop now. I have heartburn in my throat.

I have gone to four new doctors in the past few months. Every doctor says the exact same thing. “Try this medicine and wait a few weeks to see if the pain goes away.” I AM DONE WAITING!!! I went to the doctor today, June 26, and they told me that there is no other medication and we just have to keep waiting to see if this goes away in time.

I missed three months of school this past year, and because of that I have to repeat 9th grade. I am still in intense pain every single day. I do not get a break.

If you passed me in the hallway at school, or even had a class with me, you would think I am a perfectly normal person. I am very happy most of the time and I actually love school. I always get straight A’s. I have always been the top of the class. From a glance, I am perfectly fine. Well guess what? I’m not.

I love writing, I love reading, I love school, I love to hike and bike and swim and play basketball and sail. But I can’t do any of it anymore. I want desperately to just be a normal teenager! Is that too much to ask?!

The worst thing for me is when people think I am faking. LIKE DO YOU THINK I WANT TO SIT AROUND ALL DAY AND MISS OUT ON EVERYTHING?! I rarely get to see my friends!!! I rarely get to see anyone!!! And honestly, I hate it so much!!! I just want it to be gone! I want to be a normal teenager!!! UGH. Every single medical problem I have is piling onto me and I have simply had enough.

To all of you who have some sort of chronic pain, stay strong. My friend wrote “Don’t give up, don’t give in” in a card to me once. Repeat that to yourself when things get tough. You can do this. Yeah, we are all struggling with this. Yeah, it is so insanely hard. But we can do this. I am praying for each and every one of you.

You may be thinking that I just went from an angry, worn out teenager, to an encouraging, happy girl. Well, that’s just me. Yeah, I am completely, utterly worn out. But I am also very blessed with amazing friends and family. As all of you probably know, there is a very big difference between happy and healthy.

If any of you want to talk, I am so up for that. I would love to compare stories and we can encourage each other and help each other get through these rough times. Especially if you are a teen, I am so here for you.

Chronic pain with no diagnosis

I have been suffering debilitating lower back pain since 2007. I have had facet nerve injections, MRIs of lumbar, cervical and brain and ENGs. Everything keeps coming back negative. I have no life. My life consists of two heating pads and very strong narcotics. I have bipolar disorder, generalized anxiety disorder and extreme depression. I am so tired. I have an 8 year old son who suffers because of this. I cannot go outside and run and play with him, I can’t ride bikes with him, I can’t do vacation with him and it is totally unfair to him. I cannot clean my house. I start and might get one room done and then il down for two days. My mom tells me to get up and clean and go for walks etc. It’s almost like she thinks I’m lazy and just love laying around on my butt watching the same crap, different day on TV. I am just soooo soooo tired. The pain is obviously not going anywhere. I have begged for a myelogram and/or contrast MRIs. My doctor refuses to perform these tests. I had an appt with a neurosurgeon two weeks ago and he said I had excessive rigidity in ALL my joints and ordered the MRI of my cervical and brain because the lumbar was completely normal. I called the day I had my MRI to schedule a f/u and they had scheduled it for 6/29 but neglected to inform me. I asked to speak with scheduling so I could get an earlier appt. I called again on that Friday and yesterday and noone called me back. I finally spoke with a supervisor and she r/s it for 6/22 but she also looked at my MRI report and said it was unremarkable. I know she is not the Dr. But it is so disheartening. I don’t know what to do. Please pray for me.

My Story Matters

In February of 2013, I began a new career as an interventionist and street outreach employee. I had previously been an emergency dispatcher for 8 years and a part-time police officer for 2 years. This new opportunity was quite a pay cut for me but my dream position. I would be outside all day, responding to calls dispatched by the largest police department in the state, and helping people experiencing mental health crisis’s. I felt like I was born to do this work.

About a month into my new position, I began to experience pain up the side of my legs and in my calf muscles. At first I thought it was just getting back in shape. With the career change, I would walk up to 14 miles a day. I just ignored the pain in the beginning. I have a high pain tolerance due to having several other painful conditions. The main one being interstitial cystitis. Basically my bladder doesn’t have a lining.

The pain continued and became way worse. My symptoms expanded as well. For example, I was experiencing numbness in my feet and my calfs literally felt like they were going to explode. I finally couldn’t take it anymore so made an appointment with my orthopedic surgeon who had previously performed both a knee and ankle surgery on me. Unfortunately it was a 2 month wait to see him so I saw a PA at his office.

At my first appointment, I explained the pain and numbness and that I have had plantar fasciitis for 12 years but this pain was different. The Dr was very short with me and said I needed the layering method and needed to attack the fasciitis from all angles. I explained I’ve done that for years and this was different. She blew me off sending me to PT and home with gel heel cups. At one point she stated that my calf muscles were really tight and I may need to see a massage therapist to work on them. When I asked if insurance covered that she stated: “honey sometimes in life you need to pay for things!”. Easy for someone making a PA’s salary to say.

Needless to say, I felt defeated. Little did I know, this was the beginning of a very long and windy road.

I started going to Pt immediately. Within a couple visits, the therapist told me that he thought I had something called compartment syndrome. He told me it was rare and the drs may not believe me at first but he was positive I had it. I was finally able to get into my original surgeon within a month. He stated the condition was rare and he highly doubted I had it. He sent me instead for an EMG (nerve testing). The EMG came back negative and of course it was several more weeks to wait to go over those results with my surgeon. When he came into my room, he said I think you have a very rare condition called compartment syndrome (have to love how no one listens to patients it seems) and I needed to see a Dr who performed pressure tests to confirm it.

Of course it was several more weeks before I met with that dr. If you aren’t familiar with the compartment pressure tests, be glad. They basically take this huge needle with a gauge on the end of it and insert it in each of your four compartments on each leg after numbing you. This gives your resting pressures. They then had me get on the treadmill and tell them when the pain was worst. It only took two minutes for the pain to show its ugly head. They asked if I was sure…trust me I was sure.

Another note to add is that while you are on the treadmill, blood is running down your legs. I don’t recommend wearing a new pair of socks when having this test. They then retake the pressures. Normal pressures are around 5. My resting ones were in the 30’s and after 2 minutes, in the 90’s. The Dr told me I shouldn’t be able to walk 10 feet let alone miles everyday.

I was then referred to the orthopedic surgeon who told me all the details of having my fascia released. He told myself and my Mom once the compartments are released then there will never be any problems again. He also said I’d be out of work a max of 3 months. At the time 3 months seemed like forever. I’d never taken more then 10 days off since being an adult. My boss was amazing about everything. He even wrote me an email saying how valued I was as an employee and that it seemed as if I had done the job all my life.

Fast forward to August and it was finally my surgery date. My date had been pushed up two times due to my pain level. The surgery took a couple hours but the dr told my Mom and I that everything went smoothly. It was shockingly an outpatient surgery so we headed home to my parents in NY which is 2.5 hrs away.

I honestly don’t remember a ton about the ride home. When I arrived home, we were able to get me in the house. My Mom had my Dad stay at our other house (my parents live in a house on the property that she manages so we still have our house I grew up in) with our 2 dogs. Luckily I was still pretty doped up at that time and slept pretty well through the night. The next following days were regular post op days.

My Mom was a gift from God (she always is anyways) when it came to caring for me. Lots and lots of icing and always elevated. I was unable to get out of the chair by myself so she would have to help me and then I’d shuffle along with a walker. The first week or so, my right foot was at a 90 degree angle outward and I was unable to straighten it. The pain was well pain.

I was taking oxy for the pain so that helped. The high pain tolerance helped even more. I later found out that this is considered a very painful surgery for most people. About 4 days after my surgery, I noticed I had a UTI. I am prone to them because of my bladder condition so have a standing rx for them. My Mom drove the 30 minutes to the pharmacy for me (like I said, she is a saint). I was able to take the rx around 1pm that day. Around 5pm, I began not feeling great. I had a bout of diarrhea and then a terrible tightness in my chest. I went to lay down and it got progressively worse. I began shaking so bad that I could barely speak. I was freezing cold and felt like my chest was going to explode. I remember thinking this is what it feels like to die. My pulse was 104 and my blood pressure was around 200/100 and something.

Long story short, the ambulance brought me the hour ride to the hospital with my parents. We later found out that I had developed an allergy to the rx I had always used for my UTIs. Add that to my list of issues.

The next couple weeks were filled with me developing a reaction to the dissolvable sutures so my body “spit” the stitches. It was quite painful and very nasty looking.

I ended up staying with my parents a week longer than anticipated. The next month or so was filled with lots of pt. It seemed like the pain was gone but it was hard to tell from the post op pain. The spitting of the sutures delayed pt at one point as well. Before I knew it, the 3 months had come and gone.

I went from short-term disability to long-term. I went from making over $45 grand the year before to around $17 grand a year. It makes you realize just how fast you can lose everything. If it were not for my parents, I would have for sure been homeless. I also have a horse (Ernie) which is my child…my life. I still am able to have him thanks to my parents and amazing friends (who I also consider family) who took Ernie in at their farm.

Overall the severe pain seemed better as did the numbness. Unfortunately, my left foot went into a major flare. My ortho sent me to their podiatrist. This of course took forever to get in and lots of pointless appointments. They put me in a walking boot for several wks. This was followed by 2 removable hard casts and being completely non-weight bearing for around 4 months. When it hit about 8 months of being out of work, it finally set in that I was not returning to work. It was very difficult and sad for me to accept.

My boss was again amazing. They had held my job for me the longest they had ever for an employee that had only been there for 6 months. By August, I underwent a partial fascia release of my plantar fascia of my left foot. Several more months of a boot, forearms crutches, and a knee walker followed. Still, zero relief. I began going to a new PT who was highly recommended by Mary and Jerry who own the barn where Ernie is.

We made a small amount of progress and I went back to my original ortho from before my surgery. He put me in a walking cast for 8 wks and gave me hope again. That was short-lived when after the cast was removed he told me he had nothing else for me. I saw another specialist who was brilliant. He said the surgery should not have been performed on my foot with my track record. He also said that they had injected my heel so many times that there was no fatty pad left there. He agreed I needed to see a vascular specialist and continue with pt.

December of 2014 I headed back to pt. The ladies there were amazing. They agreed that many blew me off because of my weight which angered them. I had gained 75 lbs since the leg surgery. Ive always battled with my weight but working out has helped me keep it down. I hadn’t been able to be physically active in well over a year. They even took pictures of my legs and sent them to some of the best vascular pt specialists in the nation. They agreed my legs were not from being overweight. There was some sort of mechanical flaw in my body but not sure what.

I finally was sent for an ultrasound, doppler testing, and etc at the vascular department to check for intermittent claudication (where your blood flow gets cut off). I won’t even get into how terrible the tech was. He said there was nothing wrong and the dr probably wouldn’t even be willing to see me.

After filing a complaint and my pt reaching out to the vascular surgeon, she agreed to meet with me. My appointment with her gave me hope again. She told me she would figure it out no matter what. She scheduled an MRI/MRA with plantar flexion and said after that we would do an catheter angiogram to check for PAES. Popliteal-artery-entrapment-syndrome-paes is where your nerve becomes entrapped in the back of your leg. It is very rare. I had to search myself to even come up with that possible diagnosis.

About a week later, I had the testing done. I was in excruciating pain during the 3 hrs of testing. I was told , I’d hear back in less then 4 days. 5 days later, I called and a nurse told me the results were negative. She then called back the next day and said she was wrong and they were still reviewing the results. Another week went by and I finally heard back from the dr. She stated you do not have a vascular issue. Go back to your primary care. I asked about angiogram and she said there is nothing vascular wrong with me. Talk about blowing me off and ripping my hopes apart. I then decided to call another hospital.

In the beginning of May 2015, I met with the new vascular surgeon. Upon exam, he stated that he believed I still had chronic compartment syndrome. I was astonished at this. He said 11% of people can still have it after surgery and need to have the fascia completely removed. Due to my extremely high pressures the first time, he believed this was definitely a possibility. If this is the case, the surgery is much worse the second time around and then there is a 30% chance it doesn’t work. He also said there could be more than one problem. I can not explain the relief that this surgeon believed me.

2 years of an indescribable pain that has taken over my life. I have an appointment this Monday, June 15th to have my pressures taken again. I’m praying for answers. I also have an appointment on the 30th to have my upper back injected (I also have thoracic disc degenerative disease and thoracic spondylosis without myelopathy) by my pain management dr. He is also going to check to see if I have CRPS as well.

Complex regional pain syndrome (CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), usually after an injury or trauma to that limb. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body.

CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area. It is an extremely painful condition which is considered number 1 of the top 10 most painful conditions. I have nerve damage from the leg surgery and my right leg will literally feel like someone is stabbing it with a hot poker.

I’m afraid to say I’m hopeful again because I’ve lost hope so many times. I keep my life and pain well hidden from most who aren’t around me from day to day. I’m still battling for my SSDI but am making progress. On a daily basis, I can’t fall asleep until around 3am. My sleep is not good sleep. My leg pain is often so bad that I’ll have disturbing dreams where something has happened to my legs such as they catch on fire and etc.

I go see Ernie around noon and can not stand or walk longer then 10 minutes without having to sit. Sitting is also painful so there is little relief. Around 4pm everyday, the pain is so bad that I have to take a 3-4 hr nap with my legs elevated. I then head back to the barn to see Ernie again. He’s my mental therapy. He’s so used to my disability that when my leg gave out last week, he actually moved not to step on me and braced to catch me with his shoulder.

At 32 years old, it has been very difficult to adjust. I look normal on the outside and don’t have a diagnosis such as cancer that catches people’s attention. The stress of no income is unbelievable on top of the physical pain. I dread going to bed every night because my stairs are so painful to climb. You begin to feel like people forget you and have no clue what you are going through because you “look normal”. I feel people looking at me when I pull into the handicapped space. They don’t need to say anything. Their expressions say it all.

My life is forever changed. I often feel that it’s such a waste of a life. I’m so incredibly blessed with my family and loved ones who remind me daily that just because I’m disabled doesn’t make me worth any less. I can not put into words the love I have for them and how I will be forever grateful.

My parents have taken care of me after every surgery. I feel like my Mom and best friends get the most of the burden when I tell them my pain level from day to day because there are so many I don’t share it with.

I’m writing this to make others aware of my story. I want to remind everyone to always be kind to each other. You have no clue what struggles others are facing. Your kind hello that takes 1 second to say could be what makes someone like myself feel like you care. I will never give up even though there are many days I need to remind myself not to.

Spinal Block and Now Pain.

I had a spinal block done 8 years ago and the doctor ended up having to stick me 5 timet. It was horrible. He hit a nerve 3 times and made my leg jerk. I wasn’t moving I was to afraid to. He yells at me telling me to stay still. I’m scared, crying, and they refused to let my husband in to help keep me calm. It was the worst experience ever. Ever since I have been having really bad back pain and sometimes when I’m standing or walking i get a sharp pain shoot up my spine. It’s so bad that it sometimes takes me to my knees. It feels like someone is stabbing me. Does anyone know what is going on? I just got insurance so I can see a doctor. Any advice?

I think I’m really screwed finally

I suppose a small part of this is a cry for help. but mainly I want some record of my existence beyond what is happening if you know what I mean. I want some people out there somewhere to have really heard me and know why.

Starting about 4 years ago I was having severe lower back pain. Back then I thought that was so bad….little did I know.
From there over the next four years my right hip severe to excruciating pain daily….I hurt from my neck bone all the way down my spine to my tailbone. my shoulders hurt, my fingers hurt I’m just going to stop although there is more because it gets ridiculous obviously.

My lower intestine seemed to have stopped working about 2 years ago. I cannot eat food of any kind for about a year now. I have got pain daily from just drinking ensure to stay alive. And I have dropped a hundred pounds and not on purpose. I pretty much hurt all over and I feel so malnourished and awful all the time. I live alone and can get no actual help for some reason. I have been through the ringer with the medical profession and no one cares. that’s just the bottom line. And a little over a year ago when I was in the worst shape of my life and even worse now of course. Anyway my wonderful wife decided to leave me for a police officer. I cannot eat and I cannot stand the pain anymore. and I am alone no one needs me or counts on me anymore anyway. I am 43 years old and have grown children. And frankly they don’t seem to care much about me. I’m not sure why. I always did my best and they were kept safe with a roof over their head and food to eat. This generation seems extra selfish for some reason.

A living hell with LPHS

Hi I am a 26yr male and I have LPHS for the past 6 years I have had kidney stones since age 14 and I’ve had about every surgery that a person can go thru for stones. I currently moved back to Omaha NE and I can’t get any help here even if my doc in Aurora CO calls and talks with them. The urologist told me that he can’t help me and to go back to CO which I wish that I could as I had a great doc, she was the one who diagnosed me with lphs as I pee blood on a regular basis and I ha’ve so much unbearable pain I was taking oxycodone 120mg a day, lyrica 450mg daily and I would have a ketamine injections as needed as it resets your pain receptors and helps so I dont have to take as many pain pills and it really works.

So before I left co due to not being employed I had no place to live I’m trying to get SSdI I have a lawyer so I hope that I can get it this time around since I have been diagnosed with lphs I really need it and now. As I cannot work due to chronic pain and I’m not a reliable person as I’m always at the hospital or seeing some doc … Like gp, urologist, pain specialist, nephrologist and they tell me – “I’m sorry, I can’t help you, I don’t know how to treat you”!!! I have been on about every pain med known to man … The docs try and put me on methadone, but it makes me super sick and kills my stomach. I’ve tried suboxone as well and same thing.

I am so sick of getting the run around, I am close to selling everything I own, which isn’t much anymore and move to Germany as they are #1 in the world for health care. I just feel like dying, I can’t take this damn pain anymore I’m just plain tired sick in tired of being sick and tired and no one understands, not my family or friends.

I just want to be pain free once again, I want to be able to work again and live a normal life, but we all know that won’t happen. No cure for lphs. They say, sometimes it will just go away, but I can’t see that happening as I’ve had it for the past 6years. I’m tired of docs looking at me like I just want pain meds when I just want a doc to help me, like I had in Colorado. Yea, I could move back there but I’d have no place to go and I don’t want to have to sleep in my car again as that’s no way of life, but neither is having lphs. And me being so young I am scared that it’s just going to get worse as I get older.

I keep getting infections like mrsa and vre. I currently have mrsa again. I’ve been on bactrum for so long that it doesn’t work for what I have now.

I am really considering suicide as I can’t take this anymore, all I am is a burden to my family. My mom tells me that I suck the life out of her and I just feel worthless even more. I’m tired of chronic pain, I’m tired of my left side and left testicle hurting all thee time. It just isn’t fair for people like us and very unfortunate and our government controls it all and it’s bs. LPHS needs to be on the list for ssdi. Thank you for reading my story I sure hope it can help some one.

You are not alone