The title says it all I contracted RSDS in 1996 after a combat injury and this was in the right thigh, right lower leg, and right foot. After under going at that time numerous bier blocks, and tourniquet bier blocks, and epidurals nothing seemed to help. The condition got worse and I was unable to walk on my right leg for 1 year. I underwent a c&p board and received a discharge due to the injury and was compensated under the va for the disability. I have been seen in augusta georgia and other military facilities over the past few years for the condition.

The RSDS has transferred to the left leg after a fracture occured in 2000. Of course underwent numerous therapies for that extremity. The right leg I have complete dead spots that I feel nothing. I could literally stick a knife in my leg and not feel it. Sheets are horrible and I cannot stand certain clothing to be on my legs anymore. I have horrible cramps spasms and tenderness not to mention hair loss and toenail issues in both feet.

Last year I ended up with kidney stones, and this was okay until I developed a staghorn stone that was 4 inches in diameter. This stone had to be manually removed through my back. Ever since this surgery I have had the same issues with pain, clothing, and tenderness and issues with hot and cold. I am not sure if the RSDS has went to this location but i have ongoing kidney stones now.

I know that alot of years has passed since I developed RSDS but I tried to stay in the best shape and keep my body healthy after this horrible syndrome occurred in my life. I have researched many forums in hopes to find another member that has RSDS and kidney stones like myself.

Aug 2012 Basket removal surgery 8 stones right kidney
Oct 2012 surgery for 4 inch stone right kidney
nov 2012 litho ESWL for 11 stones in right kidney
March 2013 Basket removal stone surgery and vasectomy
July 2013 Litho 15 stones right kidney

Currently Have 14 stones right kidney and 5 in left kidney and 4 stones in each ureter. The doctors and surgeons have changed my diet and put me on numerous meds but nothing seems to be stopping the production of the stones. I have yet to be able to link RSDS with the formation of stones but there has to be someone out there that has ran into the same issue.

Keep in mind that is alot of surgeries but since jan of 2013 I have passed 74 stones and still had surgeries to remove stones that I could not pass. If anyone has any insight that could direct me to the right direction I would gladly appreciate the information. The VA is of no help on this issue and it appears that I am a test subject more than anything.

Location Tennessee

I am so sorry to hear it has kept spreading! It horrible enough to have it in one spot. There's not much I can advise there. But my fiancé has severe kidney issues as well. The last ones he had to have surgically removed. Something that can help prevent kidney stones is avoid foods that are high oxalate.

Here is a link of some food to avoid. This doesn't completely solve the problem but can help prevent some of them!

http://www.ohf.org/docs/OxalateContent092003.pdf

here is another link with ways to help prevent them naturally.

http://articles.mercola.com/sites/ar...th-letter.aspx


I know it's not much but I hope it can help a little. I have seen how much suffering they can cause and hope you can find a little relief!

On another note. Thank you for your service to our country. I can't imagine how hard it is to have CRPS as a result from that service. All I can say is I personally appreciate all the men and women who have served and protected our rights and dreams.

Darn it I wasn't done typing sorry! I hit enter too soon!

. When you have CRPS and you under go ANY type of surgery your doctors must be VERY careful!!! A CRPS patient requires extra care with anesthesia and after care to help prevent to spread. I unfortunately amd pregnant and having a miscarriage. To prevent the spread, they are "assisting" the miscarriage. CRPS is horrid, having a miscarriage is too. To have them combined has been a nightmare of emotions. The anesthesia had to be done carefully and very very thorough. Otherwise it can spread. If you can I would see if you can be covered to go see a specialist for CRPS and see if they can find a correlating cause with either the condition or maybe your medications? They could be causing your body to improperly absorb oxalates and calcium.

this is a link of how to find CRPS specialist in your area

http://www.rsds.org/4/resources/spec..._websites.html

Let me start off by saying thank you as well.
Now about the stones.. it could be caused by certain pain killers i.e.. percocept, or any calcium based medicine as well. as far as it being linked to RSD.. anything is possible as RSD messes up your entire body all together, mainly the parts that are on automatic pilot. so your body can be making pearls in your kidney,s because of a mixed signal. look up in greys anatomy the sympathetic and parasympathetic nervous system. It does not explain RSD, but it will give you an insight as to why and or how RSD affects you . learning about how these systems work and connect your autonomic system together you can see clearly th path RSD has to travel.. and it has many intersections with other systems, and controls or is responsible for more than you can possibly imagine..Odd but before I accepted the diagnosis, I researched a lot. constantly looking for a way to call my dr,s nuts, or lazy, that this is not what was wrong, but after all was said and done, I accepted the dx, and moved on.
I hope that this will help you get some answers you are looking for.. mind you its a bit of reading so do it in stages and take notes, putting it in your own language helps retain the info.. good luck

Hello and thank you for serving our country!!

I was wondering if they have told you what type of stones you are passing? If I recall correctly there are at least 4 different types which can help determine what is causing the stones. For instance as mentioned above to much oxalate can cause stones to form but there are other things including a genetic reason that some people form stones. This info if you have it may help someone answer your questions regarding the link or even tips on how to prevent them.

You are the first person I have seen on this board with CRPS that originated in the thigh.. even the right thigh as mine did. I have also had spread to the entire right leg and the left as well. I know you stated yours happened as a result of a combat injury and for that I am so sorry but, I was wondering if yours was also caused by an obvious nerve injury or CRPS II? I was hit head on in an automobile accident and it was during surgery to fix my hip/pelvis that the nerves were injured that ultimately caused the causalgia/CRPS II. My doctors have all said that CRPS originating in the thigh is very rare as it usually starts in the foot or hand so that is why I am curious to learn more about your story if you don't mind sharing.

I do hope you can find a solution as to why your body is developing so many large stones.. I can't imagine dealing with CRPS and kidney stones at the same time - you must be one tough person to handle both!!

Tessa

Thanks for the links in your reply. I have followed articles closely like that with my doctors guidelines for the past two years and nothing has seemed to help. As for a thank you for my service, no thanks is needed. It was something that I enjoyed doing so that you and yours can have the freedoms that we have today.

Semper Fi

As for stones from medicine. When I was in the corps undergoing treatment for RSD not once did I ever receive narcotics for the pain. The pain was unbearable but I grinned and continued on. This went on for an entire year. The treatments at the time was lidocaine xylocaine, and many other drugs used in the bier blocks and epidurals. Not including the therapy of 55 gal drums of hot water, and ice water and electro therapy. I received so much bier blocks that i built a tolerance to the meds that was used and was basically at that time given an option of amputation because of atrophy and pain. I decided against it and continued to have a strong mind set and try to beat the odds. Little was known by the military docs that I saw about RSD until a trip to Bethesda and then I was filled in on all the stages and how the cycles went.

Since then I have continued to live in pain. I try to keep my lifestyle healthy and just really try to ignore the issue but it is still present. After an injury to the left ankle which resulted in splinter effect of the ankle the RSD relocated to that extremity but the civilian doctors denied it. Same symptoms same signs and over a year to recover.

Now after numerous surgeries on my back and even though the doctors and anesthesia teams were informed that I had RSD i fear that the syndrome is now in these areas. I am in constant pain even when no stones are present and underwent further testing on the kidneys and they are still working fine. They ruled out the kidneys causing the pain. But it is the same as before I cannot stand a shirt on my back I can't lay on my back because of the material on the bed I either have to lay on the left side and curl in a ball to keep anything away from my back. Showers are almost impossible because of the temp of the running water. The slightest touch sends me into agony after the first surgery I had the same discoloration as I did when diagnosed it literally looked like you removed the first layer of my skin and the raw effect was there.

It took months for the color to return to normal but I know these symptoms are the same plus some that I have not went into detail with.

Yes I will fill you in on the injury that I sustained. Bare with me because this is a long story the doctors at the time thought it originally started with stress fractures of the tibia but ruled that out because of the time frame when the symptoms began.

Originally my team and I went on a 15 mile hump and during the course of the hump in a hot zone i started complaining of very tender spots in the mid tib of the right leg. Well since being in the field no x ray machines around the navy corpman basically said either shin splints or stress fractures. He leaned more toward stress fractures because there was no swelling from the shin splints.

The hump continued at some ibuprofen help. A couple of weeks later we ended up in a hostile environment and a bullet shattered my right femur. Med evac out and had surgery to repair the injury. Two days after surgery my entire leg was triple in size, all the way down to my foot. The doctors at the time thought that it was infection. Blood counts was fine and they were puzzled. I was then shipped to another facility where a doctor that literally looked like he was a vet for the dinosaurs came into the room looked at my leg and said I know what you have son. Tests was ran and the diagnoses came back as RSD it was not called CRPS at that time. He actually called it reflex sympathetic dystrophy syndrome. Even with the surgery fixing my femur I could not walk for an entire year. The same doctor at that time told me that I was forced with either amputation or to bare the pain and possible death years later down the road. He informed me that the pain will be so harsh that many end up taking their own lives because of it. He explained how it can cross over at the blink of an eye because of other injuries that could occur and left the option in my hands.

I decided against it and continued to press on. Numerous epidurals bier blocks and therapy did not help I basically learned to walk again by using crutches and then to a cane and then back to running in 1 year time frame. RSD started in my thigh and then traveled to the lower leg and foot. The doctors said that RSD would have remained in my thigh if stress fractures would not have been present in my tibia. The right foot had some metatarsal fractures that I caused because when learning to walk I could not feel my leg and I would literally have to take both hands grab my thigh and toss my leg in front of me. I hit numerous foot lockers with my foot therefore breaking it because I was so determined to walk when the foot hit the lockers at base i could not feel it.. Sad i know but a marine never gives up.

RSD then went to my foot which slowed down the recovery in walking because my foot was then placed in a cast which is a big no no with RSD i almost lost circulation and almost lost the foot when i went to sick bay for this reason. The cast was removed and I was on bed rest for 3 weeks all the effort I made to walk was back to square one again.

After bed rest I made numerous trips to augusta georgia at the eisenhower medical center and underwent numerous procedures while under anesthetics after months of this the doctors folded their hands and basically told me that I would need to exit the Marines under a medical discharge. I went for a C&P board evaluation and the NAVY did not recognize RSD at that time as a medical discharge and I was returned fit for duty.. KEEP in mind I could still not walk or run or do my MOS at that time. So my doctors fought the C&P board and changed the diagnoses to not only RSD but added paralysis to the right leg as secondary diagnosis. Two weeks later my board came back approved and with a disability rating. It took me 2 years after discharge for the va to get all my papers and approve my rating and to get me in to be seen. Two years of pain and aggravation and during that two years I was in an accident and fractured the left ankle and the RSD transferred to that area. Now it has been since the year 2000 literally since being fully involved in the VA system and they still have me at a very low 20% disability rating.

So with that I have furthered my education and continue to work although the pain gets to me. Sadly the va does not even know what to do for this issue at hand.

I hope this gives you an idea on how I contracted RSD the only thing that I left out was after the combat injury the corpman cut the bdu's off my leg and the laid them on the ground and due to bleeding he picked them back up and applied pressure as they were applying a tourniquet. The BDU's were contaminated at that moment and the doctors were originally leaning to the dirt, and chemicals in the area that contributed to the RSD setting up.

I first want to say thank you for your service and so sorry you ended up with this RSD and having so much issues with the kiddneys. My brother has just joined the marines and made it through boot camp and is now in 29 palms for schooling. I am so sorry for your pain and hope you can find some relief.

Have you tried ketamine? I use ketamine nassal spray and ketamine lossanges and they help greatly to live somewhat of a life.

The VA docs convinced me years ago that they are graduates of the Clown College School of Medicine.

Here is what I would sugest. Go see a prominent non-VA RSD doc. Get a complete workup along with a rating of disability from him/her. File a new claim with the VA. As a matter of law the VA must accept the rating provided by your non-VA RSD expert.

Brother, from what you have written you should be rated at 100%.

Finally most states have a State Veterans Affairs Office which will represent you at no cost before the VA. The DAV also has some good National Service Officers (but if the DAV tells you the VA is not your enemy - walk away from them).

The VA ALWAYS has an adversarial relationship with the veteran.