kidneys

Life with LPHS

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.

morphinepump

My pain story – Kariemah

My name is Kariemah and I live in Cape Town South Africa. I am a pain suffer since 1998, it took my specialist 8 years to reach diagnosis of LPHS. As none of the oral pain medication worked, they presented the option of an intrathecal morphine pump. This was done in 2007 and it worked wonders for me.

I had very few hospitalizations for pain, whenever I needed an adjustment of my internal medication. Please bear in mind, it does not remove your pain, it just lightens it. I think any person with LPHS understands that any slight reduction of pain means a great welcome. So not a pain free day but a more manageable one.

My problem now is I lost my job 3 years ago due to pain as well as my medical aid which originally paid for my pump. I am very lucky my sister put me on her’s for now. The medical aid however are taking their time to consider paying for the operation.

The battery only lasts 7 years and needs replacement. Now on my sisters medical aid struggling to get approval and running out of time. Medtronic is the pain pump manufacturer. If you are able, have a look at this as an option, it really does relieve pain.

Pills

My brother’s keeper

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.

syringe-crop

Shot went wrong

I to have had the shots in my back, on the fifth one knew something went wrong body jumped with pain and head hurt so bad, doctor started yelling for stuff from nurse kept asking if I was ok but never said anything happened, after a couple of months legs started hurting so bad I couldn’t stand to walk in the morning and legs hurt so bad all night. Well after I kept saying my legs hurt he said, you know I wake up thinking of back surgery that is what I do, don’t think I can help you anymore and sent me on my way stopping my pain meds. Finally went to my reg doctor and got back on pain meds. It is horrible trying to sleep at night, legs hurt so bad now when they didn’t before the shot. I have burning, tingling, numbness, twitching, bad pain and sensitivity to touch all on count of shots, still on pain meds, but wish now I would never had done them. So painful to walk most days and sleeping all night, I hate it. Doctor keeps trying new meds to help with twitching and pain at night, I need relief.

Proposed-Reclassification-Hydrocodone

Proposed Reclassification of Hydrocodone as a Schedule II substance

The DEA had asked FDA to recommend the Schedule II reclassification that would limit refills to a 90-day supply instead of the current five refills within six months, because of the potential for abuse.

“The restrictions may make it tougher for pain patients. In some states, nurse practitioners can’t write prescriptions for Schedule II drugs and many doctors aren’t willing to prescribe anything stronger than Schedule III”, said Edward Michna, assistant professor at Harvard Medical School, and director of the Pain Trials Center at Brigham and Women’s Hospital in Chestnut Hill, Massachusetts.

And just for comparison, cannabis a Schedule I substance.

[Wikipedia] Hydrocodone/paracetamol (also known as hydrocodone/acetaminophen, hydrocodone/APAP or under brand names such as Lortab, Norco or Vicodin) is a combination narcotic analgesic drug consisting of hydrocodone and paracetamol (acetaminophen) used to relieve moderate to severe pain.

seroquel-2

Another drug induced cause of Dystonia

I suffered from depression almost my whole life (still do). Every medication tried or combination did not help. I was put on Seroquel (a “newer”) for “mood control”. For 10 years I drifted from treater to treater, each one simply re-writing more refills for Seroquel. Once in a while someone might notice involuntary jaw movements and casually prescribe Cogentin. But nothing changed and I was soon seeing another provider. After 1O years and 80 pounds heavier I decided to stop the Seroquel myself. Exactly 3 months later the movements started. My head constantly tilted to the left and was always moving. The pain got worse and worse as the symptoms did. However, I was one of the lucky ones. Right away I went to a local neurologist who said it was Tardive Dyskenesia and referred me to the movement center in one of our many hospitals in Boston. They diagnosed it as dystonia after just 1 appointment. Some people are surprised that Seroquel would cause this life-long condition. It wasn’t on the list of the “worse” meds. But I am living proof and whenever I come in contact with someone taking it or any other neuroleptic I give them my strong warning.

8815-f1

Injury to a Navy Girl

8815-f1Hey, when I left school in 2009 I wanted to help my country, I was a really sporty and fit girl. Spent all my free time surfing. Joined the navy which i trained myself fitness wise a year before I went to base to start the training. The exercise was full on but I could handle it.

After two weeks I experienced burning pain and swelling and tingling in the sides of my legs. I was told it was just shin splints from the heavy boots.

Two weeks later the pain got so bad I knew something was so wrong. I triwd to explain it to a high up level of command. He punished me with a long run because he thought I was being soft. During the run I collapsed. My legs just didn’t want to work anymore.

I was taken to the navy hospital few weeks later diagnosed with bilateral compartment syndrome in both legs. My pressures were so bad and stopping blood flow I needed the surgery to release the pressure. 4 months laterbi finally was taken for surgery.

I was told id be fine after a long recovery. I was medically discharged. Ever since I have suffered with chronic pain. Same place and same feeling as before. I had the pressures re tested and was told they were fine.

Now every day I have to deal with this horrible pain and know one can tell me what it is!. I believe its nerves but who knows. I dont want anyone feeling sorry for me. I just hoped if anyone out there is going through exactly the same thing. Please talk to me.

You are not alone