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.

Every one has to work

I have been dealing with Flank pain of unknown origin, chronic kidney stones, all kinds of gastro misdigagnosis for 22 years. I was the full time care giver for my father with COPD followed almost right away by my mother comming down with ovarian cancer. Now that both have passed, my brother and sister became my trusties. They refuse to give any creedence to this diagnosis. They both have no medical backround and have come to the conclusion that any pain managment doc is only a drug dealer and that I can not afford health inn. And if I want to eat more than my food stamps I need to get off my lazy butt. They both have told me to go hold a sign or be bouncer. They have both told me to get over it, every one has to work. They both have said any time we speak, it is all BS about pain, vomiting. My sister screamed at me that getting to BJ’s to shop for the month is not an accomplishment, yet some days it is an epic journey to do 2 things. I am now living with 2 LPHS diagnosis, no pain meds, no doctor and they not only make me feel like a usless burden but that somehow I have let them down by not living up to my potential. I dont know where to turn for help or support in Miami. Every day I wake up feeling like I have been kicked in the scrotum, the pain causes me to vomit with such force, that I often pull muscles in my back and neck. I was on the 50 pu Fentanyl patch and oral Dilaudid, Morphine for breakthrough. Now on no pain killers, it is such a trial to even be civil. I have no way to get through to my siblings, this pain is horrendous and so arresting, but they treat me as if this “life” is some kind of a choice to avoid employment. I am 47 years old and this is the worst the pain has been. Without the Fentanyl I am getting more done, but the recovery days are lost time of my life.

Winning the Battles, but Losing the War

A normal person, from the outside. School, friends, sports. A normal person, from the inside. Dreams, goals, aspirations. Though my secret life begins to take hold, it begins to leak to my closest friends, slowly making them not my closest friends, it begins to leak to my educators, creating a wall of superficial pity, it begins to leak to the public, showing an image that I tried so hard to keep down, to keep to myself.

An image of a angry soldier, fighting to live day in and day out. A person who gets flagged as a cripple, as a drug addict, as weak… That’s who I’ve become. A person that no one wants to talk to on a bad day, because chances are my bad day will make yours much worse, though words, through actions. That’s not who I am.

It’s arguable that the only thing worse than living with chronic pain, is having to deal with the people around you, whilst dealing with chronic pain. “Wow, blue tape today”, “oh, yellow tape, very nice”, “the green tape doesn’t suit you”, “you must be feeling better, you’re not wearing tape!”. “Have the doctors figured it out get?”, “are you sick and tired of wearing braces and tape all the time?”, “does it hurt?”, “can I touch it?”, “why weren’t you at school yesterday?”, “another doctors appointment?”, “did your doctors even go to medical school?”. “You look horrible today”, “you look better today”, “you look like you haven’t had any sleep”. “You should see my doctor”, “you should try acupuncture”, “you should see a psychiatrist”, “you should take a break”, “you should take some Panadol or Neurophen”.
“You should try harder”…

The only thing that spices up my life is seeing new doctors and wearing different coloured tape, let me and my tape be. And certainly, when I’m not wearing my tape, it does not mean I’m better, most probably worse, and was in too much pain to apply said tape. No, the doctors haven’t figured it out yet, and yes, they went to medical school, and as it happens I am seeing the best specialists in the state, so you giving your medical suggestions doesn’t help me one bit, and you bagging on my very hardworking medical professionals won’t achieve anything but make me more angry, they’re doing all they can, there is a reason it is called ‘unexplained pain’. Yes, I am sick of wearing tape and braces, and yes, I’d much rather have them off then on. Of course it bloody well hurts, what did you expect? And no, you can’t touch it. Thank you for telling me I look horrible, it’s makes me feel so much better, and you can probably assure yourself that I had the same thought and overwhelming feeling when I got out of bed that morning. Also, thank you for telling me I look better, it doesn’t, and won’t, make me feel any better, ever. And if I look like I haven’t had any sleep, that is most probably because I haven’t, because, as it turns out, it is quite hard to go to sleep when pain plagues your nights. My team of doctors is probably better than your GP ten fold. Acupuncture won’t help, nor will Bown therapy, yoga or witchcraft. My mental health is fine, I don’t need a shrink. I think I am more than qualified to know when I should take a break. Panadol or Neurophen, even both of them put together, don’t even come close to the course of pain medications that I am on. And for heaven’s sake, I am trying my hardest. I am here, at school, almost every day, other than the days I am sitting with my legs wrapped around a chair in a doctors office. Sure, it takes its toll, I get angry, I get impatient but I’m still trying to live my life. I am still a human being, and I am still able to pull my weight, the only difference between you and I, is that my weight is 50 fold heavier than yours, and I am pulling mine through ten feet of mud.

I am living, just as every other person, there is no need to segregate me into a little pen of the unwilling and broken, population of only one. I am willing and I am not broken. I am strong. I can see through the clouded vision of pain, I can push through the voices that titter at my head, I can overcome the pain, if not halt it in its tracks. Though, alone it is very hard.

I want them to see, I want them to understand. I want them to empathise. I don’t want pity, I don’t want sorrow, I don’t want a cutting of flowers and a box of chocolates with a nice card every week, all I want is for them is a shred of integrity and understanding. The line between the two seems to get so clouded, and that rarely ever gets addressed. From the outside, a person who would see me on a daily basis, but not know me, would know that I live in some sort of pain, and that I was not the most pleasant person to be around. From the inside, a person who knew me well and took their time to talk to me, would know that I struggle a lot, but I push through the pain, they know when the pain is talking, not me. Though neither of these two groups know it true…

Pain is my best friend. I’ve stopped reaching for the white flag, and have kept fighting. Everyday is like a little battle, and everyday, when I take my last set of drugs and lie in bed, a little victory is on my side. Even though this happens, everyday, I’m still losing the war. No matter the amount of little wins I gain, there’s no hope for a victorious war. I’m lost for hope. I’ve given in. Every time I used to see a new doctor, or a new specialist, I used to entertain the possibility that this one might know. And every time afterwards I was silently reminded by myself that there was a reason it was called ‘unexplained pain’. I am strong, though tiny little chips have been made every day, and I’m at breaking point. My story isn’t a glamorous one. Nor is it one that is in sights of a happy ending. I try to live in the future. For the last few years I have worked so hard at school to set myself up for the career in medicine that I have wanted for a while now. Though that sometimes seems as if it is sliding away, that it was a foolish goal, being easily stopped by the army that is pain. Will it ever go away? I’ve learnt over the years to be hard, to grow a leathery skin, so that nothing can get in, and nothing can get out. Though, this has left me with no feeling for the niceties of our society.

All I want is people to see that, to understand that.

I don’t think life is meant to be a losing war, but I guess some manage to pick up the broken army.

Disabled Veterans with Chronic Pain.

For 15 years I have lived with this condition, this illness, this disease called Fibromyalgia, that has no true tests to find it and yet the only thing to find it is trigger points in the body. Not even blood tests, MRI’s’, cat-scans and all the technology in the world can’t see it in a person except when they complain about excessive pain in regions of the body. The intense burning, sharp pain that just is the gift that keeps on giving.

Back in 99 when I was in the military I started to have problems in my body I could not explain. First it started in back, then it slowly traveled to parts of my body and yet couldn’t figure what it was. At that time this condition was not believed in by doctors, some consider it as a “junk diagnosis.” Through that time I was always in the ER because my doctors told me it was all in my head and prescribed me with anti-depressants that did little to ease this deep pain. I struggled a lot in the first 8 yrs before actual diagnosis. Constantly in the ER asking for relief, relief that resorting to pain killers. Even to this day I have to be on pain killers to actually function period in my life. I cannot even work anymore due to this problem I have. I live with pain every single moment and yet no one in my family has it. It has caused me to lose my three younger kids, my parental rights because back in 09 my condition was so out of control that CPS was called in and they knew that it hindered me as a mother, a parent from doing my duty. It has caused me to be this invisible disabled veteran, not able to work or be happy truly or even do things I once was able to do. Today I have Fibromyalgia, an arthritic spine, bad knees, bad shoulder ( left ) and insomnia.

I struggle to get out of my bed. I struggle to function properly. Yet the VA tells me I am able to work, but has not since 06. No employer is going to employ someone like me that needs to lie down, that can’t lift too much, sit too much, walk only so far and can’t stand for too long. I am fighting my hardest to get disability because I am not able to work period. I only live on 630.00 per month. I can’t live on my own because I am not able to afford rent properly or take care of my son that is my oldest that lives with me. I have to depend upon others to help me when I am sooo used to doing it for myself. I am on the pain killer – morphine because everything else does nothing for me to function. I really have no option at all to escape pain killers as I would like to have. I do not want to be on pills forever. I am so tired of them as I know the addiction rates, side effects and damage it can do to me, but what can I do? Nothing but take them so I can actually get out of bed.

People do not understand that there’s people like me that struggles everyday and has this invisible disease that can debilitate and cripple in the long run. At times I do have to walk with a cane when my knees are bad. Sometimes I can do little of something and my sciatic nerve goes out of service to the point I am not able to put on my pants or shoes with the aid of someone. It really does a number on me mentally. It even causes me to think of suicide but I do not wish to do so as my kids are the only thing that keeps me going day by day. You see so many point fingers and say, ” Oh you are not disabled.”, when they do not see me at home or see me on a daily basis. I get told, ” You are too young to have these problems.” Pain or disease does not discriminate against an age group or gender. At times I feel so worthless as a mother and parent because I am not able to do what I like really without worrying if I am going to hurt today or the next day. At times I feel useless when the pain gets bad and I am having to worry about whether I can get something for my kids for their birthdays or holidays.

The rating for physical disabilities are lower than mental disabilities that are like 10% here or 20% there but they give almost 100% disability to someone who has a mental problem but when it comes to someone like me I get nothing and told the same run around. This is the rating type for the VA system. Many disabled veterans like me have to fight tooth and nail to get anywhere with the VA especially backlogs on people waiting for compensation for disability. I really feel the rating system is so off and not properly given to those that need it to survive because work is hard for those living with chronic pain. I have been to many clinics and been on all sorts of medications. Believe me it sucks at times. I even hear there is a possible cure but if they had it, then cure me, please cure me of this pain I keep dealing with. I read in some article or watch YouTube that there is a way, but if they had a cure then I wouldn’t be in such a struggle as I am in now.

Chronic Pain Sufferer

I can’t imagine the frustration of not knowing and listening to everyone, with a “have you tried this”. I have a name for mine and it is still frustrating when people say have you done this yet. I’ve survived 8 lumber surgeries. 3 cervical surgeries. 3 herniated therasic discs, which the doctors say, “We can’t do anything for them”. I have lost count of the number of injections. Every doctor I’ve been to says, “well you haven’t had injections from me”. With the same result. Pain , and sometimes even more pain to the point of being hospitalized for a week. I have an inturnal stimulator. which hurts to the touch and when I lay on it. I understand the person who said, “they pray for death or feel like dieing”. I’ve lived with this since 1991. My body has now starting to shut down. It hurts to breath, the mussels around my lungs are not functioning. My joints are burning and my mussels ache ever so deeply. Walking, sitting, standing, the pool, the car, movement causes pain. My head feels so heavy, full of fog. And yet that is good because it also feels like it wants to explode. When is enough an enough? I don’t have a choice with my body, can’t i have some dignity?

Fighting to live with Chronic Pain, please help

I am 21. I am young. I played soccer for my university, and I was a highly competitive cheerleader. I was a jock. I played every sport. I won races, and competitions. I have jackets, and trophies filling my closet and basement. I was happy.

Then slowly, pain crept in. It took over. It ruined relationships. It scared me. Treatments, and surgeries took over my planner. Nothing worked. I have tried everything. I have travelled to different countries looking for help. I have accepted that this pain will last forever.

Lately things have been very bad. The pain has made it hard to concentrate. Pain meds don’t relieve the pain, and I can barely concentrate. I feel like I’m living in hell. I feel alone. I feel depressed. I need help, because I don’t know how to do this. I don’t know how to live like this. I want to be happy. I want to learn.

I feel like a burden to my family, friends, and boyfriend. I text them constantly and I seem clingy. I am home alone though while they are out. They are the things that make my bad days slightly bare able. Please help. Please give me hope. Please give me kind words. I don’t know how long I can live like this.

I need HELP

I was diagnosed with LPHS in 2009, Dr. Singri and Dr. Hebert in Columbus, Ohio. This was the beginning of a my now ongoing horrific experience, I am now 60 dealing with unrelenting exquisite pain. In 2007 through 2008, after numerous kidney stones, pain that was unrelenting, blood in urine, I had stones shattered by la-pro-scopic lazor, a stent was placed in my kidney to ease the passing, all that did was put me back in the hospital where the stent had to be removed. I was told by a kidney specialist in Arizona, my pain didn’t make any sense.

In 2009 a miracle, I made an appointment with Dr. Singri, my Mother and Sister accompanied me, I described in intricate detail of my pain and symptoms; he said, I believe you have LPHS, a biopsy confirmed the diagnoses, pain management is the only option. I had already lost my job, my independence, my home, everything. Even my family and friends doubted everything I described. My Mother would lay on top of me to quiet my screams as she tried to squash the pain. I can not get relief in any position, sitting, standing even laying down makes it worse. I am usually sitting Indian style just rocking back and forth.

Over the last few years I have also been diagnosed with severe depression, fibra-myialga, psoriatic and rheumatoid arthritis . I was an inconvenience to my family, I now live in a rooming house in Delaware, Ohio. The first pain specialist prescribed Oxycontin, preformed a d enervation, by inserting a four inch needle into my spine, more pain the effort was unsuccessful. After losing 50 pounds, and when I witnessed the doctor stealing my medication I sought help at OSU hospital. They started IR and ER morphine, fentanyl patches, seroquil, clonazapam and anti depressants, lyrica and steroids. On the pain scale I was then a 7 which seemed like a gift from God. Until last summer, when I was admitted to Grant Hospital with kidney failure. I was told I was over-medicated, they prescribed Cymbalta and IR morphine every 4 hours. The pain nightmare was back a full force 10. I was released a week later, still with a critical kidney infection the pain was unbearable, I tried unsuccessfully to end my life, to be free of this burden of pain and the inconvenience of my existence. By this time I was wheelchair bound. Unable to care for myself with no desire to live or thrive. I wanted to be free.

I am now seeing a new pain specialist, who has admitted his lack of expertise with LPHS. He began by prescribing Zonagran (side effect, kidney stones) I had to stop after passing 5 stones in one week, now on Baclofen, Gabapentin and Opana 20 mgs ER every 12 hours, the morphine is no longer effective. At the onset the main issues affected my right kidney, now as Dr. Singri suggested the left kidney has joined in, again the prescribed medications lack effectiveness, level 8 and rising everyday. I don’t know what to do…..should I see Dr. Singri or Dr. Hebert again or seek help at a pain clinic? There is so much more to my story, if your interested I can go into further detail of my struggles and losses.

What do I do now?

You are not alone