Hi my name is Marlene Taylor. IM 47 YRS, I feel like I’m much older. I have been diagnosed with this disease since 2009, everyday theres something. Just when I think I have learned to deal with one problem theres another. Well today my clothes is a bother to me. I wanna pull my skin off and just snatch the problem away. I never felt this way before so I’m guessing. This is the disease progressing new feeling and emotions just when I’m learning to handle the pain in my hand and neck not to mention both my legs even eye problems. Now I’m dealing with the feeling of clothes, how they’re bothering me wow. Help, HELP ME PLEASE SOME !!!!!! COULD USE SOMEONE TOO TALK TO
I was 15 playing on a football team for Sequoyah Indians . I was a big stout young boy Unstoppable. One afternoon we had a scrimmage with the varsity team, they all try to block me but could not so they put three men against me one fell on his hands and knees behind my legs the other two kept pushing I could not move my feet. my cleats were stuck in the ground and as the other two kept pushing I screamed and pleaded with them to stop but they did not when it was over my feet were in the ground and my helmet was touching the ground bend over double backwards. The pain from that was intense as I lay there for about 5 minutes I wanted to cry but I did not think that I was hurt in any long-lasting compacity I did not see no blood broken bones or anything like that.
So I gotta finish the game and that night my right leg hurts so bad I prayed to God and I was a True Believer then. I asked him to please stop the pain please stop the pain after being up most of the night and I finally fell asleep my life was changed forever that day.
And every day since that day I am reminded of it is constant pain and it gets worse with age does my bones start to deteriorate. It started it what they call a degenerate bone disease comma and then the lower three parts of my back I have no cushion at all it is bone against bone so I deal with that and, being a big boy I was also bullheaded. When I was 24 I had a roughneck throw off a plate of Steel off the rig floor and came down and hit the back of my neck I did not get to go see the doctor until the next day.
When I was 26 I was thrown from the back of the truck to the hard ground on a rig location I hit so hard it left my head elbow shoulder imprint in the hard shell I've never been the same since.
Just because I was bullheaded I managed to stay working until I was 40. When I reach 40 depression despair hopelessness all come flooding in and I lost it I couldn't hold a job the pain was too much and I contemplated suicide everyday was on my mind all the time what's the only way I knew that I was going to be out of pain.
One day I saw a brochure saying that if you live in pain to come see us that we may be able to help. It was from a painmanagement clinic which I didn't know nothing about and since that day my life has changed for the better I still live in pain but I'm not constantly thinking of it it takes enough pain away but my life is tolerable again.
And now the lawmakers the DEA people who have never felt pain want to take away the only thing that works. I don't want to go back to those dark days of thinking of how to end it I have a responsibility to my pets and one person that I really really care about who depends on me. I don't know what to do to plead with the state legislature I am only one man.
And I know there is a lot of people out there who live in pain daily chronic pain that never leaves. What it does to your mind is beyond being immoral and irresponsible for the government take our medicines away. I always feared this day would approach and as it gets closer my fear becomes more real.
If they take our medicines away there is only one outcome left for me and I think a lot of other people also , I know I paid in all my life in pain I still work seven days a week 24 hour call. I paid my dues. Now they're wanting to take away the only relief that helps. What kind of country do we live in to do that to their elderly is that why we have a Marine Corps and Armed Forces to protect those who can't protect themselves? I'm living in fear but for the time being I am able to keep the pain at Bay. But what about that day that I've been dreading for so long when it comes what then that's a big question mark because I know I will be so unstable there's no telling what I would . Signed by Living in Fear.
I got the first injection C3/4/5,– 2days later I was in the ER with high anxiety, nervousness and extremely high blood pressure. Thought it was a heart attack or stroke. Asolutely no pain relief, actually increased.
Four weeks later had #2, a cervical epidural injection; ended up with a TIA mini stroke –no evidence of cause after lab tests; I expect the steroid. Again no pain relief; –I am done!! Too scary in cervical, and low probability of success
I had severe flank pain started in the late 80’s I was in my mid 20’s had just had my 3rd c section. I kept going to the Dr. for what I thought was a uti nothing would show up except blood. I held several jobs and missed work occasionally due to flare ups, some were tolerable others were not. In 2004 my husband of 22 years became very ill later to find out he had West Nile…yes a little mosquito kicked his butt. I thought he was going to die he ended up with meningitis was transported from one hospital to a bigger hospital and in the hospitals for over 2 weeks, after he returned home my disease reared it’s ugly head we have since found stress is the main trigger for me. I was afraid of losing my soul mate that triggered my disease and we have not been able to put it away since then.
I had a job I loved I was in law enforcement I was a alternate Sargent as well as a training Officer, I loved this job and was very good at it. I kept getting sick after years of them telling me I had to take a vacation because I never missed work. I missed some work and after others complained and even with Drs. notes I was fired, it broke my heart I felt devastated.
I tried other jobs and landed leadership positions I always ended in the hospital with my LPHS. And then I would lose those positions.
I almost went insane I always had the support of my Husband thank goodness for him he never doubted me and my pain, other family members did and I lost friends because I couldn’t make any plans.
I was diagnosed two times I refused to believe it but finally in 2004 I was told I didn’t have to believe it, it is what I have and I need to face it.
In 2010 I had an episode last for three months we put a pain pump in and in order to do that I had to meet with a psychiatrist they tested me and the test did show I am in constant pain.
I think the more we get this disease out for others to see maybe more people will realize what we do go through.
I was just diagnosed with LPHS. After 8 months of horrible pain, nausea, kidney infections, kidney stones, and just feeling like I have gotten hit by a bus- I have finally found a diagnosis that fits. I’m 16, so I’m still treated by pediatric doctors. My pain management doctor in Atlanta had abandoned me before I got this diagnosis, and a pain clinic in Boston had turned me away. I had to go in search for something that fit, and I finally found that something: Loin Pain Hematuria Syndrome (LPHS). After exiting my Atlanta adult nephrologist’s office this morning, it was like I was walking on air. I have finally got a diagnosis that fits and he is a man with a plan. Dr. Handelsman was so helpful and I know he could see my relief. He has treated 3 LPHS cases, so he is what could be considered the Atlanta expert. I highly recommend him if you have think you have LPHS and live in the South East.
I finally have something with a one of treatment, and I can’t wait to get started. Anyone else have LPHS? If so, how have they treated it?
Hello. I am Melissa. An independent, thirty year old mother of two. When I was 16, I had my first kidney stone. Convienently, my first surgery to have one removed. For 14yrs, I have increasingly been spending my time in Emergency rooms all for the same answer, ‘yup, you have kidney stones.’ Finally in February last year, I demanded my PCP to send me to someone that could lessen my stones as they had become constant and far more debilitating than the pain I had always learned to work around. So to the urologist I went. Longing for an answer and an escape from the recluse my pain had created. I was only disappointed when he told me the pain couldn’t be from just my stones, and there were other symptoms that were alarming and requiring of a Nephrologist. Dr. Liu is amazing. Had she not been as dedicated as she were, or studied where she did, I would still be just as answer less. A kidney biopsy and an argument between her and my PCP, I am now in a pain clinic. My second visit will be next month. The first thing he said to me was that my biggest problem will be in finding a doctor who can give me the answers I need. So now, I have an answer. My kidneys are 50% dead with a very thin membrane, and I have Loin-Pain Hematuria Syndrome.
I am a very positive person. I have had horrible things happen in my life, family that isn’t blood, but I have always had this spark inside me that knew everything would be okay if I just made the best if it and pushed forward. I think the plug has fallen out to the jar of that sparks fuel.
In the last year, I have lost my job, school has forced a medical leave of absence for three semesters, and my normal working out, working, going to school, taking care of the household life does her best on a great day to vacuum the floor without puking.
It was hard to accept that the girl who wanted to live to be a hundred, had to do her best to make it just ten more years. But I did it. I spent four days crying and feeling sorry for myself and all the things I would never do and decided I’d had enough. That wasn’t me.
Now I am stuck trying my hardest to find a way to get back to my ‘normal’ way if life as much as possible.
Is it wrong to just want to live as normally as possible until you die?
How can I find a way to live with this pain when every doctor you see’s first sentence is ‘I’m sorry it took so long for me to get in here, I had to research your disease because I’ve never heard of it before’ ?
I’ve done my best to deal with this pain as best I could for as long as I could. And now that I need help so that I can work and provide for my family, cook and clean for them, hell even make love to my spouse, I feel more lost and alone than I ever have.
Just me and my pain.
Fighting each other’s Will,
Both still standing in the same spot.
I had the worst experience today this is my 5th shot over 21/2 years never had a problem with the procedure before. I got on the table the face rest was not positioned right I had to tell them and they addressed the situation, but still didn’t seem right to me. I always get the knock out juice not a fan of a needle going into my neck. Well not only did I feel it going in I started screaming to stop the pain was horrendous, they said calm down we still have some more to put in . Needless to say they finished up when I got to recovery I was in so much pain my whole right leg and arm was numb. 4 hours later the numbness of my leg went away but still my arm is numb. Neck and shoulder stlii hurts. Anyone ever had this happen to them!?