Just Diagnosed with Suspected LPHS

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?

Pain Is My Best Friend

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.
Standing toe-to-toe.
Fighting each other’s Will,
Both still standing in the same spot.

Cervical shots

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!?

Too young for this

I’ve been dealing with chronic back pain, several herniated discs as well as osteoarthritis, spinal stenosis and scoliosis for over a decade and I’m not even 40 yet. I have 3 kids and a husband that I love to take care of and be a good wife and mother too. But my chronic pain keeps me from this and enjoying life in general. This article speaks to my heart and says everything that I want to shout from the rooftops to everybody about my pain that I live with every second of every minute of every day of my life. Most doctors that I talk to take one look at me and the first thing they say is “you are young and healthy there can’t be much wrong with you” and I’m dismissed right away. If there are days I go to see a specialist and I decided to slap on some lipstick and a little bit of blush well then I’m even more ignored, because there’s no way somebody living with chronic pain had the energy or desire to put on a little makeup let alone bothered to shower. There are some days when I’m getting ready for doctors appointments and I want to intentionally not shower and make my outsides look the way I feel on the inside just so that people can take me seriously. Each new Dr brings on a new challenge of proving the pain that I’m in. So I make sure that I hold on to all my CT scans, all my MRI’s, all my xrays, all my blood work like they were the last things on earth that matter to me. I’m very lucky to have a supportive and loving husband that allows me time to rest but more importantly the space to vent about how this chronic pain breaks me day in and day out. We’ve been together long enough where he has seen my breakdown happen. From someone who wouldn’t go a day without working out whether be lifting weights or running to a tired worn out “dead inside” mother of three, struggling to put dinner on the table with a smile. Some days I could lay in bed and stare out the window crying and then there are days where I can walk miles and miles feeling great and go to bed with a smile on my face. The one thing that always seems to be a rock amidst the crazy pain is surrounding yourself with supportive understanding and loving people. Living with chronic pain makes you realize what’s important in life and what’s worth spending your energy on. I am hoping that through finding the right doctors and continuing to surround myself with supportive and loving people there will come a day when I will have more good days and bad days. Until then I wake up each morning thanking God for all of the things I have in life asking him to give me the strength to be the best that I can be.

Worst day

I’m temporarily ( I pray) paralyzed in my right hand and arm. I knew from the first needle in it was placed wrong, my arm and Body jumped off the table. I cried in excruciating pain!
I hyperventilated was given o2 and proceed. It was like an electric shock went through my arm and neck. I was in the hospital for 2 days, MRI and Cat Scan show damage to my spinal cord.
I’ll never do another cervical epidural again. I’m following through with surgery.

My life is pain

So I’ll start with my recent issues. I’ve had chronic fatigue syndrome since 2009. I worked until the summer of 2014. I lost my car and then sprained my ankle the same month i had to quit or be fired.

Everywhere I’ve worked, no one has any sympathy. I’ve had people tell me I’m faking it, exaggerating it or it’s all in my head. The first few years I had this (until 2011 or so), I thought I had a stroke and/or losing my mind. I was also in pain of all kinds.

CFS is the bastard child of modern illnesses. People don’t even take the term chronic fatigue syndrome. They think it’s a made up western/american condition. It’s very real and its a pain in the ass.

I haven’t seen some of my friends in years, those that I do keep in touch with I don’t even see that long. I rarely go out because I either don’t have the money, my anxiety gets the best of me, or I don’t have the physical and/or mental energy.

Those first few years I had CFS I had countless people take advantage of me, be rude to me, accuse me of doing drugs. I’m glad I finally left where I used to work, I even got an attorney to possibly file a harassment claim.

I’ve had people accuse me of hypochondria and most conventional doctors have been unhelpful and even counterproductive at times.

I will have a hard time getting on disability, despite my condition putting me at risk of injury (or worse) and others at most jobs. My lack of motivation or low energy is often attributed just to “laziness”. Please… I used to do martial arts, break dancing and high intensity weight training, i can barely do any of those, I do my weight training but maybe once a month if that.

Next time you see someone going through this or that has CFS, maybe try to help them out instead of being so judgmental and unhelpful. Stress makes CFS worse as well as many other chronic conditions. If I had AIDs or cancer or a more well known condition I would be taken much more seriously.

Anyways, just felt like ranting

Childbirth epudural

It’s been four years since I had my son and the epidural. It didn’t work to block the pain. I have seen a couple of doctors but they think I want pain meds and a diagnosis or disability. I do not. I want my life back. The day after delivery, and since the epidural, my life has changed forever. I have chronic pain and weakness. And other issues associated with it. I just want to feel better. And I won’t take pain meds for it. Not how I want to live my life.

You are not alone