Reflex Sympathetic Dystrophy (RSD)

[Windym2006]

Hello everyone,

I have been lurking here since my original diagnosis in October last year. I have learned so much from reading everyone's stories and questions. I hope everyone is feling as good as possible this evening.

I have a few questions I would like to throw out to you all if you wouldn't mind, but I will tell my story first.

I have been a lot more fortunate than most with this disease. My Orthopedic Dr knows a lot about RSD and was very quick to suspect it with me. When he first started talking about it I did not recognize what he was saying because I had only heard the "RSD" and he was saying the words out.

To give some background...I have an Aunt who has systemic RSD and is completely disabled. I also have a cousin who developed the disease at the age of about 27 or 28 and is completely disabled. He is a year younger than me. (I am 33 now)

I have twisted my left ankle many times and actually broke one of the bones in my foot falling down a couple of steps about 3 years ago. Then, last year out of the blue, my foot and ankle started hurting. It was getting progressively worse to the point where I could barely get out of bed in the morning. I went to see an Urgent Care clinic thinking I had somehow broken it again. They said there was a bone fragment and sent me to the Ortho. He said no bone fragment, and diagnosed me with tendonitis On goes the boot for 3 weeks! When I would remove the boot to sleep at night the swelling was so strange. It looked like there was a hotdog under my skin going down the top of my foot! After 3 weeks I go back to the Ortho and he sees some of the swelling which never to this day completely goes away. He also starts noticing the discoloration of my foot. It is always darker in color than the other foot and warmer to the touch. I have at this point also started having intermittent problems with touch sensitivity. This never got really bad though. He took me out of the boot immediately and ordered an MRI He kept saying "possible early stage sympathetic distrophy" and I had always heard it only called by the initials RSD. When they scheduled the MRI and handed me the RX...it said possible RSD and that is when it clicked in my head. I broke down crying and handed my mother the RX. We were both extremely upset because we had seen what my aunt and cousin have gone through.

Wow this has turned into a book! Sorry guys.

MRI pretty much just ruled out everything else, and I basically was diagnosed with RSD and treated with meds and PT for mobility. Everything seemed to be going okay for a while. I even went off of the meds with no problems. I thought I was in the clear! Then at the end of January I was in a car accident in which I seem to have injured my lower back. I have a bulging disc which is impeding the spinal cord somehow (I really don't understand it all) as well as osteoarthritis in my spine!? I have had decompression traction therapy for the last 4 months which has done nothing for my pain. I have had 2 lumbar spinal steroid injections which did nothing but cause more pain. I have had massage therapy 3 times a week as well. Now I have started noticing pain in my foot and ankle again. As I sit here typing this I feel like my feet are on fire, but they are cool to the touch.

I guess I have come to my questions for you guys!

Do you think it is possible that the back injury could have caused RSD to flare again? Also, I went to see a Neurologist who looked at my MRI of my back and said "I don't know what I can do to help you. This looks like something chronic that you will just have to learn to manage." He prescribed Topomax which I cannot afford ($397 for 60 pills! Health insurance does not want to cover it!) He did order another MRI and an EMG. Have any of you had an EMG and are they usually successfull in helping to diagnose RSD?

I am having a really hard time coping with the "learning to manage the pain" aspect of this all, and I know that I should feel blessed that I am not as bad off as some with this disease. I am a 33 year old mother of 3 daughters ages 11, 10 and 6. I work in a retail job where I am up and down and sitting on a stool for a good portion of my shift. When I asked the Neuro about work he acted like I was trying to get out of working at all. Then I said that I work in retail and he said "find a different job!" I am scared and a little bit depressed and would appreciate any advice you lovely people have to offer!

Thank you to those of you who managed to make their way all the way to the bottom of my book and story!

[thoracic]

I am darlene ( thoracic) I am 44 and have three boys i had TOS that short for thoracic out let sydrome. i had surgery and a month after that the pain was worse and spreading. Because it late where i live in syracuse ny. it is 1230 but i will tell you this yes your car accinent can cause a flare up in RSD, i know a lot about rsd and i am sorry i cant to you more . I wish this form would allowe emails [moderator note: e-mail address has been removed] I will try and answer all your question. Im sorry for you and your family. please respond back tommorow. Take Care

[G0J0G0]

Hi Windym2006 and Darlene,
You can exchange email address' through the chat forum down load the tool bar and you can chat one on one and exchange address' You cal also chat with a bit more freedom ai rsdandyou.com. a lot of the times the websites will be removed also but maybe this will remain. If you all find yourself there look me up and be blessed in your journey, g0j0g0

[reruho]

Windym
I woud say yes to the accident causing your RSD to flare. I am finding little things can make my RSD to flare. The air conditioning at my new PM's office has had me in pain for days. Stress is another thing that will cause a flare. Tonight my neighbor came over to tell me about the death of her dog and I could feel the pain rising in my body as she talked.

About your doctor, I would get away from him as soon as possible. He doesn't have much experience with RSD or he would have been more understanding. You need to find a Pain Management Clinic with doctors that have experience with RSD. Make sure you are comfortable with your doctor, trust you gut feelings about them. I went to one for months that did not talk to me and seemed annoyed when I asked questions. My new PM doctor is more open to my questioning ways and is even doing more testing to rule out some other things.

The bulging disk is impinging on your spinal column means that the bulge is pressing on the nerve, or in this case your spinal column.

An EMG is Electromylogram. It is a test that looks for muscle damage. You may have another test done at the sametime called a Nerve Velocity Study (NVS) or Nerve Conduction Study (NCS). It looks for nerve damage. The NVS will be done before the EMG if both tests are done. The NVS consists of them placing little metal disks on your skin and then a current is passed through it. It was a mild shock and over in an instant. The EMG is very similar but this time very small needles are inserted into the muscle and then a current is passed through it. Again, it was a mild shock and over in an instant. I had a very experienced operator doing my testing, so I suffered very little discomfort. I had asked my doctor for some Valium because I have a shot phobia. I faint when getting a shot. The EMG can cause some muscle soreness. The EMG/NVS can be normal in about 35% of RSd sufferers.

[Sarah3104]

Hi, I too have been diagnosed with RSD/CRPS. I had an electrical shock four years ago and have had chronic pain ever since. I have mild RSD. I do believe your back injury caused your RSD to flare up, infact I'd bet money on it. Don't give up though. No there is no cure, but there is help out there. I have been on Amitriptyline for about 6 months and while it doesn't make the pain go away it does make it tolerable. At least in my case. What insurance do you have? My doctor just put me on Topamax because its safer in pregnancy, and I want to get pregnant soon. You need to fight it. It may need an authorization in order for you to get it, and if not then your doctor can write a letter of medical necessity and tell them why you need this certain medicine. I work for a doctor and my education is in billing and insurance, and I know from experience that if your doctor puts a little effort in it, most likely they will pay for it.
I have had test after test. Two EMG's, two nerve conductive studies, MRI's of my brain and spine (I actually have another one next Friday) a bone scan, a bone density scan and they all were normal. My orthopedist suggested a sympathetic nervectomy, which is where they sever the sympathetic nerve that is causing all the pain. I went to one neurologist that would see me every six months and just ask me how I was, no real treatment.I live in VA and so I went to UVA hospital and they actually confirmed nerve damage and RSD/CRPS. What I'm trying to say is don't base anything on tests. They can be inconclusive more times than they are positive. Find you a doctor that has had some experience in RSD and a clinical evaluation is all you need. A good doctor will listen to you and include you in treatment.
Hope this helps.

[G0J0G0]

Hi Sarah ans all,
My orthopedist suggested a sympathetic nervectomy, which is where they sever the sympathetic nerve that is causing all the pain. I went to one neurologist that would see me every six months and just ask me how I was, no real treatment.I live in VA and so I went to UVA hospital and they actually confirmed nerve damage and RSD/CRPS...

This procedure mentioned in your post is a very risky procedure that has a success rate of approx. 30% and this only offers a chance of about 40-65% pain relief. The down side here is the 70% of persons that do not realize relief have more frequent and more intense flare ups. The overall pain levels are higher and much more difficult to control and in most cases there is a greater chance of RSD spreading. I speak so infatically because I am one of the 70% persons and I do not under any circumstances recommend the procedure. And if all of this is not enough of a reason, consider the fact of if another procedure of promise comes down the road of progress then you are likely not a candidate because of the possible permanent effect this has on the nerve(s). If you all are considering this as an option do yourself a favor and RESEARCH RESEARCH RESEARCH exhaustively. Leave no stone unturned in your search for info. Blessings in your endeavors, gojogo