Reflex Sympathetic Dystrophy (RSD)

[k9cop93]

I am a fairly healthy 40 year old man. I've had several ankle surgeries, the last one, was the worst, replacing all my ligaments with allograft tendon and using plates and screws to reattach a calcaneous fracture. All was going fairly well. Although I still had a bunch of pain 4 months after surgery, I viewed this as normal. Several weeks ago, I hopped off the deck at my house(just 30 inches), and when I landed, it felt like I dropped my foot into a bucket of fire. That feeling has lasted up to now, although at a somewhat lesser intensity. Occasionally, I feel like someone sticks an ice pick in the bottom of my foot, and sleeping is difficult because I can't have anything touching it, not even a light blanket. After seeing my pain management doctor, and ER doctor and surgeon I was left with the impression that they did not believe the amount of pain I was in. My physical terrorist, who I have built a great relationship with over the last 6 months, suggested I look in the direction of RSD I don't have all of the symptoms, but I meet 90% of the criteria(i.e. trauma and such). What I've been getting is explanations of nerve damage that could have been done during surgery, scar tissue, ect. I don't buy it. I'm not at all a wimp. After 17 years of working with police dogs, I've had my fair share of pain. But nothing like this. It's not just the point of surgery anymore, it's my whole foot and lower leg. I've pretty much retired from my career, because I can barely walk the 1 block to the mailbox and back much less do the things I need to do to handle a dog and be a police officer. I'm at the end of my rope. I feel for you guys that have been dealing with this for years. I haven't had to do it for 3 full months, and I wish I could just have someone cut it off. I need you guys with experience to let me know who I should turn to and how best to deal with this. I've found over the years, if you really want to know about a disease, don't ask a doctor, ask a patient. That's what I'm doing now. Someone please answer me. Thanks.

[chrisandrob4ever]

I really sympathize with you. I hope that someone cna help you. Find a spine & pain specialist they will help alot with deciding what you can do.I will be doing a simulator in a month. Good luck.

[babbs]

I to dont have all the signs and symptoms,but i was diagnosed 6 yrs ago. It is the worst pain you will ever have and it stinks cause there is no cure. The best thing to do (and may be tough) but is to find a Dr that will listen to you and knows of this wonderful thing(NOT). The internet is the best place to find one that will listen and is close to your area.. I feel for ya and hang in there

[Bussey]

Hello k9cop93,

I am very sorry that you are suffering from such excruciating pain! Unfortunately, the symptoms that you described, are characteristic of RSD. For example, the disproportionate pain that you are suffering from, as well as, the extreme burning pain, the hypersensitivity, which manifests as you not being able to tolerate a blanket touching you, and the stabbing pain, etc. Yes, there are other symptoms that are characteristic of RSD, but one does not have to suffer from all of the symptoms of RSD, to be suffering from, and diagnosed, with the condition.

I am hoping that you are not suffering from RSD, but I suggest that you find a Dr., who specializes in the treatment of this horrific condition, for example, a neurologist. Also, I have read many cases on this forum, whose diagnoses were made by an orthopedic specialist, or, surgeon. It can be difficult to find a Dr. who specializes in treating this condition, but it is expedient that you persevere, in your efforts to locate a Dr. who is very knowledgeable in this area! There are many web sites, that provide help in finding a Dr., in your area. I will be listing a few web sites, that may be of interest to you.

I suggest that you begin your search immediately! As I have said many times on this forum, when someone may possibly be suffering from RSD, time is absolutely of the essence! Early diagnosis and treatment, are crucial, when hoping for the possibility of a positive prognosis!

Educating yourself is very important, because, I believe the best kind of patient, is an informed patient! You may want to share some of the web sites with your doctors, as well as, educating yourself.

RSDhope.org

http://www.healiohealth.com/rsd-reflex-sympathethic-dystrophy-syndrome.html

http://www.webmd.com/pain-management/guide/crps

Hopefully, these web sites will be helpful to you. There are other web sites, that I will list at a later time.

I wish you the very best, and I hope that your pain levels will decrease significantly, in the very near future, with the help of your pain management Dr. Be persistent, and hopefully, your doctors will LISTEN to you!

Bussey

[k9cop93]

What are the normal treatments for pain? Narcotics? Neuroleptics? Anticonvulsants? I read a disturbing article on Neurontin, and how even though it was initially intended as a combination antiseizure drug, it was pushed for such things as pain and bipolar disorder as off label uses. Many of these uses caused really bad side effects. I personally know 2 people who have used it(both paramedics) who had problems when tapering off. One experienced problems with A-fib and has to date had 3 heart surgeries, and another developed an SVT/PSVT complex, had an internal difibulator placed, and lost his battle about 2 years later. I'm sure there are more neuroleptics left, but I'm scared to death of the side effects. What medications can I expect to use, or are the possibilities endless?

[Bussey]

Hi,

I am going to attempt to copy and paste a web page, that should answer the questions that you have, at this time.

http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/reflex_sympathetic_dystrophy.htm#Is_there_any_treatment


If you still have questions, please feel free to write in to the forum. I'm sorry about what happened to your friends.

Take care.

Bussey

[Bussey]

The last word that didn't fit from the web page address, is, treatment. If you're not able to find the page. Please write in, and let me know.

Bussey

[Truth Seeker]

k9cop93

I was diagnosed with RSD almost fourteen years ago, also do to a calcaneus fracture and surgery, since than, I have learned more about RSD than I care to remember.
It is very clear, that the cause of RSD is unknown and consequently there is no cure.
Medications, cannot cure an unknown cause, they may reduce pain levels, yet enhance serious adverse side effects.

If I could do it all over again, I would pay a lot less attention to my symptoms and sensations, even-so, this may appear to be impossible, yet there is something much greater and more dangerous than RSD and that is "trauma."
Trauma can reach us on so many different levels, effecting everything within us from the tips of our toes into the top of our brain.
Trauma often begins as closed trauma do to a stressful situation, but it becomes open trauma do to surgery for instance, either way, it is a shock to the system.
By the time we are diagnosed with RSD, trauma had a chance to manifest and now we are surrounded by doctors who have no education as it relates to RSD, no compassion, but lots of insults, which merely adds to the trauma on a psychological and emotional level, in other words, we have just entered the vicious cycle of trauma, add to this the trauma created do to job loss, finances, relationships etc. etc. etc.
When I think of trauma, the figure eight comes to mind, because of how it effects us and crosses over.

The best way to avoid trauma is, to distance ourselves from anything or anyone who is negative, which based upon my experiences includes doctors and their useless interferences, which all to often just create more trauma.

Study the statistics and effects of trauma.

Truth Seeker

[babbs]

i to was put on neurontin and as a anti convulsants it caused me to have seizures....