My LPHS story

I’m a 24 year old female from London, England and I have been living with LPHS for about 7 years now but only been dignoised for 2. Like many of the story’s I’ve read on here, it started out with in what I can only describe as a red hot pain in kidney, that would stay for 3 weeks on end and let up for 1 week and start all over again. I would have episodes of this for 3 months, then it would disappear and then reappear and so on. As you can imagine I spent many days in and out of hospital, being told it was maybe a uti that traveled to my kidney and would be given countless amounts of antibiotic because the amount of blood cells and blood that would show up every week at my doctors. Every day was a struggle as the only pain relief I had was paracetamol as due to my other illnesses I can’t take ibrophan or anything of the sort. This went on for many years, still with no answers. Fast forward to November 2012, my LPHS had become completely unmanageable I was constantly in pain, just having a couple of days free of pain and then starting over again with this come pure blood in my urine (when I’d go to the toilet I was passing blood with tiny amounts of pee) I was admired another 4 times within a space of one month, countless tests where run and again couldn’t really find anything to put it down another uti that’s probably traveled up to my kidneys and was given more antibiotic, along with dyhidracdine and this carried on for another year and half. Being past around to different specialists, one even turned round and told me there’s not one thing that can be down for me, I’ll probably be on pain meds’ and bed rest for the rest of my life. I’d hit my wall, I’d honestly given up hope; i really believed that maybe this doctors right, there’s nothing no one can do for me and I just have to get on with it. My GP had heard back from said specialist and decided to take action, she called the hospital and demanding I be seen by (sorry I completely forgot the name of the department) with much resistance, I was finally given an appointment for 3 months time.

The doctor was a good send, he read over all my notes, listened to what I had to say and he said “I know exactly what’s wrong with you and I’m sorry it’s taken this long for you to get to me” he explained to me about LPHS but not in great detail, just the basics and said that there is something that could be done but because of my poor health, thy don’t know if the odds are in my favour. I was told a lot of planning and meetings would be needed to state my case and see if they can get the go head. That was November 2014 and that was the last I heard from the doctor, I’ve had no follow up, no contact what’s so ever. My doctors in the process of contacting his department to find out what’s going on but until then.

Advice is very much welcomed as I’m still pretty in the dark when it comes to this illness, all I know is from what little I find on line. Thank you.

How would you describe LPHS flank and back pain?

About 6 months ago I had a UTI which went away after antibiotics. However since then I’ve been dealing with prostatitis. They say you have to be careful since prostatitus can be caused by bacteria which can travel to your bladder and eventually to your kidneys. I’ve had everything tested (urine, blood, semen) and only semen had a trace amount of bacteria which was treated w antibiotics. To date however my prostatitus symptoms are present and flare up after having sex or drinking alcohol. I’ve never had any flank pain until last week. As such they did a CT Scan and a Renal Ultra Sound. Both of those came back as normal. But they did find a trace amount of red blood cells in my urine. I was able to control the pain w Motrin and I thought it was going away until yesterday. The pain was constant. But the main questions I have are

a) what does LPHS pain feel like exactly?

b) where does it hurt exactly? (I feel pain soreness on my side, abdomen, mid back and between the shoulder blades) most severe pain on my sides.

c) what would you recommend in my situation to determine if I have LPHS or not?

Epidural Gone Wrong

I have degenerative disk and have had many epidurals. I just had one by my new pain mgnt doctor and something went wrong. I need help to find out what happened and if there will be future problems. When I woke up following the injection, my right hip hurt really bad and continues to do so although it has been 5 days now. My hip is sore to touching it. Can anyone tell me why? As I said I’ve had epidural’s about every 3 months for years but this has never happened. I’m to have another one tomorrow by the same doctor. I am very concerned if I should allow him to do another one. Any help would be greatly appreciated.

Life with Chronic Pain

Maybe you are a stay at home mother, construction worker, lawyer, student, etc. It really doesn’t matter. Let’s say you’re a doctor. You have a family, a mortgage, expenses related to your practice, kids in private school and the normal living expenses everyone has.

One day you go to work and you’re in an exam room with a patient going about your life as usual, when out of nowhere a bee stings you on the calf. You didn’t see it coming. Would you be able to continue talking with the patient like nothing happened? No, you would naturally stop, look at your calf and realize it was a bee sting. You know it’s not going to hurt long.

Now, imagine if the bee kept stinging you and it never stopped. You could go on with your life for a while. You have to, right?

Weeks, months, and years go by. You’ve been to so many doctors and not one has been able to help you. No one can stop this bee from stinging you.

One day you realize the only way you will ever top feeling this pain is when you die. You can’t work, you can’t sleep, you’re sick from the pain, there are no answers, and now you’re desperate. Some doctors believe you and some don’t.

Your family, finances, friends and of course yourself all suffer. Chronic pain drains every aspect of a person- physically, emotionally, socially and financially.

Also, people get PTSD from chronic pain. They are trapped in their physical body of pain. They were going about their lives as usual and one day they got a forever headache, A pain injury from a car accident, skiing accident, maybe they have fibromyalgia, because they overworked their muscles at their job and so on.

Pain is traumatic to the suffererer, just like rape is traumatic to a rape victim. Just like war vets have PTSD, so do chronic pain patients. Pain patients suffer more than people realize, especially doctors. When their pain gets out of control, there is no where they can go. The drug addict and the alcoholic can go to a rehab, and the mentally ill have the psychiatric institutions, but the painfully ill have nowhere to go.

Pain patients often wind up in mental institutions where they don’t belong. You wouldn’t send an alcoholic to the local bar for help, right? You would take him out of his environment, surround him with people who are similarly suffering and provide specialized treatment for their disease.

So why don’t chronic pain patients have a place like that? Why do they wind up surrounded by the mentall ill? Because there is nowhere for them to go. They are misunderstood, misdiagnosed, lost and alone. Many consider and commit suicide. Why? Because death is freedom from their prison of chronic pain.

An impossible decision

I hurt my back when I was 18. I am now 33. For 15 years I have been dealing with chronic pain. From the age of 18 to 30 I was able to work with my doctors and receive opiates to keep my pain at a reasonable level. I have the whole spectrum of pain. Burning in my legs and feet, numb patches in many places below my waist and 10/10 back pain. I’ve tried every pain medicine and even got myself off opiates to make sure I could actually get off them.

My life is crap when I do not get relief. Over the past 3 years the same type of pain has started in my mid to upper back, shoulders, arms, hands and fingers. My joints feel like they are twisting, white hot pain in my shoulders and spine and through my pelvis. It’s hell.

Opiates allowed me to live a life where I could actually do things like keep a job and have a somewhat normal social life. As the government started to restrict doctors from writing for opiates my world view became scary.

I can not live without some kind of relief. I find myself in the ER in many occasions and the staff thinks I’m a drug seeker. I’m sure everyone here knows that feeling of judgement from people who simply do not understand what I we are feeling. Every daily activity is made harder or impossible when there is no real help.

The one thing that makes me feel even worse is how people can’t see the disability and pain on my skin. I’m obviously just getting high or having fun on opiates in their opinions. It is amazing how I can be in so much pain and be totally invisible or untreatable because of the new opiate legislation. At this point I want to die. I’ve been able to keep my head up for 15 years but I’ve gotten to the point where living the near 2/3rds of life I have left is just too much pain. I have thought about suicide the last few months mostly because I’m being treated with medicines that don’t even touch the pain. I’ve always kept myself at the lowest levels of pain medicine like lortab and Vicodin. Now I have nothing. Nobody writes scripts for pain patients anymore because of the opoid epidemic.

What are we to do? How can we tell ourselves that life is worth living when all we feel is pain. Waking up in the middle of the night with pain, pain all day and into the evening and then getting even worse as nighttime comes around again which just feeds into the another night of trying to be comfortable enough to sleep. Like I said I’ve always been a strong person but with no relief for the pain it just takes over and twists your mind against you.

I watch my peers and family live normal lives and doing normal things while I attempt to have the normalcy I had when I was still being treated with pain meds. All of these circumstances take me to that thought of just escaping to sleep forever. I cried as I read these stories because there are so many of us who just need a little boost of relief to lead a better life and feel valuable to society. The one reason I stay on this earth is because of my mom. She has stuck with me through thick and thin and is totally aggravated just as I am. For that reason I don’t want to cause her pain due to my choice. I do feel that I am currently hurting her because she is watching her son suffer. It tears my heart up to see her upset.

This epidemic will continue because some people want and try to get high off of the only things that give me and most likely all of you relief and it is absolutely terrifying. It is impossible to have people around you understand that these drugs are not fun for us, we take them for the right reasons. As soon as your a pain patient the stigma arises and never goes away, just adding to the emotional toll.

Things look very bleak right now. I can try all I want to try and live the most normal life I can but pain simply interjects itself into every situation. At this point if I could go to sleep and never wake up i would absolutely do just that. My mom keeps me here, she is the only thread left that keeps me from actually committing suicide.

Someway, pain patients should all get together and demand empathy from the institutions that once gave us a means to not be in extreme pain all the time. The whole situation is pretty much unexplainable. Every time I see my doctors they tell me there are issues in my spine and shoulder BUT the issues shouldn’t be causing me this agony. That disconnect, where doctors no matter how good they are cannot feel what we are feeling. It feeds into the frustration and helplessness because thats exactly what we are, helpless.

I wish all of you luck in your own situations and least I can put my thoughts on this site as well. It is okay to cry, I do it all the time.

It is not okay for us to be treated like horrible people who have done something wrong. I hope everyone gets the help they need and lives their lives as pain free as possible.

Idiots of this world……..Always point the finger at the patient……..

Next month is my second year reunion for what I refer to as the beginning of my epidural hell. I write papers, website comments, e-mails and the lot to any one or organization of my ordeals with ignorant point the finger individuals. Also known as the Doctor Mr. Quacks of this world whom misplace the needle locations, create a enormous error and point the finger toward the client. This writers negative symptoms are so debilitating and the number so lengthy, it is over a novel long. Having two prior injection, one understands, through the experience, knowledge of just what it feels like if the procedure is performed correctly. My third was given by one of those Mr. Quack individuals. Excruciating pain, numbness, loss of bladder/bowel functions and the lists are reams of paper. Never, have this procedure unless it is ultimately the last resort. My story is available within one of my websites. I shall e-mail this org to see if they allow a forward, it is well worth reading, which I add to on a weekly basis. Maybe you are just starting and or been there and need that acknowledgment that you are not alone. Good luck.

Mans Life of Pain

Treated so bad as a child; then to have a wife pass away from brain tumor after 18 yrs of marriage; leaving him with 4 children to finish raising; jobs weren’t so understanding. Then 2 car wrecks later watching him live in pain and doctors treating him like he’s just there for medication. No he is literally there for the Chronic pain, the degenerative bone disease, the bone spurs, the bone fragments; the spine damage from the 2 wrecks within 3 months no fault of his own; they nearly killed the man. Now watching him live in Chronic pain; knowing a little medication could help his mind functions better yet doctors think he’s just wanting the pills. They need to see his MRI’s and Scans of his spine. The Spine is one of the Most important functions in our human anatomy it has to do with every thing you are. The Pain is so bad; His Mentality is awful. Trying to keep him up is hard. He just needs a little help from a Real compassionate doctor these PA’s just a couple of years of school has No idea what someone in Chronic pain goes thru just to get thru a day.

You are not alone