I’m 14 years old and I’m not great at this. At writing. I want to talk about my chronic pain, but I don’t know how. If you think there is a word, a feeling, an emotion that could even come close to describing how it feels, then you are wrong. Have you ever broken a bone or been in an accident? If so, then I envy you. If you broke a bone, the doctor can give you a solid cause, treatment and recovery time. For me, and anyone else with chronic pain, it is different. We don’t know how it happened. We don’t know how to fix it. We don’t know if it is going to stop. If you can imagine the feeling you get when you first see the words ‘chronic pain’ written on a diagnosis sheet, then you have more empathy than even the best actor. And best actors’ empathy doesn’t even come close to what you need to imagine you have just been told you are going to spend a lifetime in pain. I went from an independent person to an ‘invalid’ who had to call for help even getting up. That is what chronic pain does to you, and as I said, there are no words to describe that feeling. You can be sad, angry, frustrated and exhausted at the same time as the pain, and sometimes it is just too much. If I say I can’t do something, don’t push me, you are going to just make me feel even worse, and believe me, that is last thing any sufferer if chronic pain needs. Just because we can do something one day doesn’t mean that we can do it everyday. If I was walking yesterday, that doesn’t automatically mean I don’t need the crutches, the support and sometimes, the days I can’t get out of bed, anymore. That doesn’t mean I am cured. It just means that yesterday was a good day and today is not. No amount of medication can change that, and you need to understand that. If you tell me about some ‘miracle’ treatment, chances are I have already tried it and as I am still here, with this pain, it hasn’t worked. If I haven’t heard of it, I’m not going to get my hopes up about it. If this is a cure you can get in the health food aisle of a supermarket what makes you think that it will be more effective than the expensive procedures I have already tried? To all those who do not have chronic pain, please just try and accept that you are never going to be able to understand what it is like, living with your demons. And lastly, to all those who (like me) have chronic pain, my heart goes out to you. We may not be able to fix this, but we can master it. It may take months, it may take years, but eventually we are going to be able to say to the doctor ‘I can do this, or I can do that now, even with this condition’. And that day will come, no matter how far away it seems now. At the minute, I can’t see the end of this road, but I know it can’t go on forever. It won’t go on forever. The road may end, or it may just change direction but whatever it may be, change is coming, whether it is coming quickly or slowly I don’t know, but I do know that it is coming, and that it will be for the better. Stay strong.
I’m a 24 year old female in chronic pain and no doctor can figure out why it’s starts right under my rib cage on my left side and radiates down my abdomen and back. I have had a exploratory laparoscopy I have had a endoscopy and colonoscopy and they still can’t figure out whats wrong with me I throw up everything it seems to get worse after I eat or try to eat. The er says I’m there for pain meds but I have never not once asked for pain meds. I’m at my wit’s end I can barely get out of bed because of the pain and this has been about 5 months since I’ve had this pain and it seems to be getting worse. I’m to the point were I want to kill myself because I just feel like I’m crazy
To Those Without Chronic Pain:
If you were to pass me by on the street, or stand in line behind me at the store, or even have a brief conversation with me, chances are, you won’t notice. You won’t notice the struggles that slow me down every second of every day.
Hi, I’m a senior in high school and chronic pain has been a big part of my life for the past two years now. I haven’t written for more than 10 minutes at a time in over a year because every time I do, my palm swells up and a burning sensation takes over. Sure, I’ve attempted to switch writing hands- but it’s only been to discover the same burning sensation welcoming me. Is that it? No, that’s just the beginning. Every day, I fight through some sort of pain. It varies from my knees to my knuckles to my elbows and the pain finds no limits.
It’s been a difficult journey, but I’ve learned to fight through the pain every single day. It isn’t just the pain that slows me down, however. It’s the ignorant comments from people that drag me down. No, the pain is not in my head. No, I do not enjoy wearing different braces every day. No, I’m not exaggerating. And no, I’m not lucky because I’m given some leeway with school work (believe me, it isn’t much).
It isn’t exactly possible for me to describe to you the pain that people who have chronic pain have to deal with. It isn’t exactly possible for me to describe the emotional toll that this pain takes on us. It isn’t possible for you to feel the pain, and I wouldn’t even wish for you to. However, I do wish that you educate yourself more about chronic pain, and work to raise awareness.
To People Who Suffer From Chronic Pain:
Hey, I’m with you. I completely understand what you’re going through. Maybe you barely suffer from chronic pain. Maybe you suffer at a greater extent than I ever have. Either way, I believe in you. And I believe that you have the strength to keep pushing through, and to show up stronger than you have ever before. Chronic pain gets difficult to deal with and I truly understand the way it may have turned your life around and tired you out. But it’s never too late to get back up on your feet. Good luck to you guys and keep fighting like the warriors you all are!
The pain started November of 2008 and I can remember the day like it was yesterday. I was at work on a break and immediately dropped to my knees in pain and thought my appendix has burst. I left work and went straight to my doctor.
The doctor did not know what was wrong and had ruled out my appendix as a cause. He thought maybe I had a cyst burst on my ovary game me a shot of pain meds and I was sent on my way. Well the pain continued on and I was referred to a urologist because an X-ray showed kidney stones in my right kidney. So off I went to the urologist to hope for some relief. The urologist was not sure how I was in so much pain since the stones were just sitting in my kidney.
At this time I had already had plans to move to NC and was scared of what to do. I was prescribed pain meds and sent on my way. Once in NC I met with a new urologist and he decided to do Lithotripsy, July, 2009 and break up the stones and see if that brings relief. Well to make my very long story short, it did not and then the following year I had more stones and attempted Lithotripsy once again. The 2nd Lithotripsy made the pain worse and it last non-stop.
After, being bounced from ortho to chiropractic to acupuncture….I took control and demanded to be sent to a Nephrologist. At the appointment, the Dr. walked in and told me he knows exactly what is going on and continued to explain Loin Pain Hematuria Syndrome and how all my history and test confirmed I have it.
I felt a weight lift off of me to know I finally have an answer and I am not crazy. However, he explained he felt horrible, but based on lack of studies there was nothing at this time he could do for me other than, send me to a Pain Clinic for pain management.
I was sad to be stuck with this and not have a cure yet happy hear the words pain relief. So off I go to yet another doctor very hopeful to find relief and get back to being NORMAL. The appointment lasted a whole 5 min. and the Nurse told me they could not treat me because they did not know how to and the fact there was no cure. I burst into tears and told her the pain was killing me.
At this point I didn’t even know what happy was anymore. I felt like cutting my own kidney out just to try and make it stop. When I left the clinic I called my nephrologist in tears and told him what had happened. He was very upset and said they should never refuse a chronic pain patient treatment. The next day I was woken to a call from him that he had sent my information to another pain management clinic and that he was so sorry for how I was treated.
This was in October, 2013 and I was not very hopeful anymore and was just like whatever. I have to say though I am so very thankful for the new pain clinic, they have been amazing and trying their best to find a way to manage this rare disease.
I am not 100% pain free but I have had a few pain free days for the first time in 6 years. It still is a struggle and I have my days I just want to lay in a ball and cry in pain but I must strive on and work.
I do agree this condition should be put for permanent disability until they find a cure because it is very hard to make it through the day in such horrid pain.
Dear LPHS and other pain sufferers, I am compelled to share the following information with you for a two-fold reason: 1) that actual sufferer of LPHS is a dear family member and 2) said sufferer is currently incarcerated and cannot help himself.
What I am about to share with you is an account of his years of pain, in his own words from a letter he sent to me (I will not add or delete anything, except for any proper names or anything that might be considered a breach of an individual’s privacy):
Hey bro, Well as far as my kidneys. You know what you read already. I have microscopic blood in my urine on occasions but it is mainly macroscopic (you can see it). When I do urine tests it is usually 3 blood or more. I have constant kidney/bladder infections. In fact, I am finishing up a course of Bactrim for one now.
I have pain that would put a bull in traction damn near EVERY day. I have gone to medical on numerous occasions with very little help. **** doesn’t want to pay for anything. They won’t even send to see a Urologist or Nephrologist for it. I have been sent out to civilian emergency rooms only twice. I am usually put on a 5 days course of Ultram, which is a very low dose, non-narcotic pain med. It helps some but with only 5 days it doesn’t control the pain through the whole episode. I have bad pain that can last up to 30 or more days. After 5 days of the Ultram I am just starting to get some relief and they cut me off.
The Nurse Practioner I see now is trying to help me. He has submitted my case to the Pain Committee but with no success. They tell him to put me on high doses of Tylenol and Motrin. I can’t take those for long periods of time because they are bad for my kidneys. Some days I really wish I was dead instead of being in pain. I know it sounds bad, but it’s true. I have cried myself to sleep more times than I can count. I could just use someone to help me force these f***ers into really helping me.
This disease will not kill me but it sure as hell makes me wish for death. I don’t need a lot of help, just enough to keep me going until I can get out of this rat race and see a REAL doctor. They think in here that everyone is just trying to get pain meds. Everyone wants to get high. Then when it comes to someone with a real problem, they get screwed. They finally have my blood pressure under better control. It used to get as high as 200/170 with a pulse rate of 165. That is enough to cause a stroke. It is usually only that bad during severe episodes of pain.
I am on 3 different meds for blood pressure and pulse control. Verapamil, metoprolol, and lisinopril. they at least keep my pressures under better control. When I have a severe attack though, they still go up. The Nurse Practitioner told me that is what got his attention because you can’t fake blood pressure. That is a big problem with this disease because you can’t SEE it so the docs think you are either drug seeking or mental. I have had to deal with that for years.
It took 4 years of tests and psych evals before I was finally diagnosed in 1998. It was thanks to those two women from Europe. It has been a very long, painful trip since I had my first kidney stone in Oct. 1994. After that, it all went to shit. I passed 12 kidney stone in that next 2 1/2 years and I’ve had 1 in here back in Feb 2011. The kidney stones didn’t hurt as bad as this disease. It is worse than giving birth because at least the pain stops, pretty much when the baby comes out. This LPHS pain continues for far longer.
Well dude, not sure what else to tell you. I do appreciate you doing this for me. Take care of yourself and I will talk at ya’ later. I love you all.
I am 34yrs old and all of my daughters life I have suffered with chronic pain in my spine and down the backs of both legs due to a head on collision with an artic lorry. I was in hospital for three months as I fractured my skull causing two blood clots on my brain. Luckily I pulled through but have had to live with chronic pain ever since, the NHS system I feel, has failed me, they just keep on referring me to different departments saying they have to eliminate other medical conditions.
I’ve had to push myself to the limit every single day as I want my daughters life to be as normal as possible, she has been my reason to carry on living this nightmare, I want to see her grow up, she is amazing and I love her so much. The pain has effected every aspect of my life, I don’t really have a life! Everything revolves around the pain. My mobility is not good and I have to take a cocktail of pain medication just to take the edge off the pain so I can walk and move about!!!! I feel so drained and weak physically and emotionally.
I don’t want sympathy just understanding of my problem and a diagnosis of what this is. People are so judgmental, they think because you look ok on the outside, everything is ok inside, even medics make you feel like your lying or going crazy or even exaggerating… and as for getting any help!!!! I cry on a daily basis because I just cant believe how you can be left to live this way. I used to work but I cant while I’m in this state, I would end up getting sacked! if they could cure me I would be back at work tomorrow till then I have to survive on benefit, its depressing. Keeping the house clean and walking to pick my daughter up from school is hard enough work.
The brain injury has left me half blind in both eyes, hard of hearing and suffer short term memory loss, to top it all off, the accident was not my fault. I was overtaking a idiot driver who was busy reading and kept slowing down, as I sped up he did too! not letting me overtake. So I then slowed down to get back behind him when he slowed down leaving me in the wrong lane we then came to a bend in the A552 where there was a artic lorry traveling towards us, I started breaking but it was too late and we hit head on, me being in a metro, stood very little chance of surviving!
Police asked in the newspaper for the idiot driver to come forward but he never so in the courts hearing, which was done while I was in hospital still, I got the blame for overtaking on a bend and was done for driving without due care/attention. So I couldn’t claim any compensation!! can anyone advise me? or have I just got to deal with it? I did not take out the overtake on the bend! but I’ve got to suffer because of someone else who nearly killed me and my daughter.
I have been dealing with chronic pain in my legs and feet for more than 12 years. The pain has destroyed my personal life, social life, my education, and many other things. My doctors don’t give a rats ass if I am in pain or not. For the last 2-3 years they will not give me any opioid’s to help me fight my pain. I have given up on any hope I had. I used to think doctors would care for me, but I believe they are waiting for me to die. I am thinking of ordering pain meds from Mexico.