Reflex Sympathetic Dystrophy (RSD)

[Layla]

Each case is different as is each other's body and chemistry. The "cocktail" of medications you will be on will be altered to your body - hopefully by someone skilled enough to understand what works best. Tests will be done regularly through such areas as blood work to make sure your Kidneys and organs are not harmed in any way. Unfortunately with this affliction we are at the mercy of medications specifically designed for other problems to help eliminate the pain and discomfort. That is why it is so very important to start alternate ways to help you maintain your pain. Relaxation meditation focus imagery sure does help in putting the mind in a position to help block the pain and focus you on the positive side rather than the negative side while pushing the stress away that RSD thrives so much. As mentioned earlier, do your homework in setting your network of doctors and professionals. As the media campaign progresses to educate the many who are unaware of just how serious RSD truly is, we need to step up to the plate and assist in getting the word out. Actively speaking to drs., ambulance groups, PT offices, the governor and your legislation to push legislation through are all different tools to open the Public's eyes. We are here to assist you through these times as to aid your family and friends as well. Contact me or anyone in these type groups when you need support or questions answered. God bless -

[mrsamyhume]

Thank You Gojogo and Layla! I can't tell you both how much I appreciate your reponses! It's good knowing that I have people to talk to regarding this. Next wednesday is my appointment with the specialist and I feel hopeful that I will get the help I need. Thanks again,Amy

[mrsamyhume]

Today I finally had my first appointment with Dr. Nasir, a neurologist with the Neurological Disorder Clinic in Sunbury, Pa. He actually knows what is going on! I am so thankful! He has prescribed me topamax, and vicoprofen in addition to oxycontin and ambien. I hope the topamax works, i have heard mixed reviews. If anyone can offer any knowledge of these drugs I would be so happy!!! Thanks, Amy

[Layla]

I was in the first study using topamax for rsd and found it to be a blessing. After being on it for quite some time, my dr. and I felt we should put in on the shelf as something that works affectively and try Avinza. This is also working as well. Now we're trying Kadian - basically the same as Avinza but a lesser mg in hopes we might be able to curb some of the MANY meds I am taking. Since we are all meds forever rather than short periods of time, since there are no meds specifically designed for RSD to date, we need to remember to hop off some of these every once in a while and try something else so that our bodies do not reject the meds' usage. Same goes with sleep meds. A funny story about sleep meds - I went off one and hoped to try melatonin in its place. an over the counter with a slow release was working fine - until - I started having some weird dreams - including being naked and having sex with my Grandmother! That's when we put a halt to that baby! What a hoot! Remember after you stop laughing so hard after that story - we need a variety of meds to handle areas of sleep, depression & anxiety, pain, spasms, etc. This is why it's great to regularly monitor them with the dr. who is handling your prescriptions. Have a great day, keep smiling! The sun will be brighter tomorrow!

[propwash]

Hello Amy,

My name is Keith. I am 54 years of age. I have degenerative spine issues especially in my cervical area.
My heart goes out to you and your family. It does indeed effect all. My story starts Christmas eve 1997.
I was sick with a virus, a common cold. I developed a bad cough. I was at work ( self employed family business ) late and had a bad cough spell. During the cough I dislodged my C-5 vertebra. It slipped back under the force of the cough crunching and bruising my spinal cord. It felt like electricity shooting all through my body and out my finger tips in both hands. I fell to my knees then shook it off said what was that, then proceeded to do it once again. The nite went along work ended and my fingers hurt like crazy. Christmas day passes no problems. Afternoon I go to work on my car some. I notice I am droping my tools a lot. I blamed the "BUD", well it was a holiday right? I go into the house to use the restroom and on the way out I find that I am bouncing off the walls back and fourth on the way along the walk way. At the end of the hall I fell to the ground with 90% of my muscle strength gone. I thought I was getting sicker from the virus. Not....Six Doctors and six months later no explanation. I was still very very weak. My right arm was numb up to the elbo and both legs did not work well. I could stand but if I picked up a five pound object I could not walk with it in hand. Finally
almost by accident I see a Dr. at USC medical center in Los Angeles. MRI show a 2" bruise on the spinal cord. January 1998 surgery to fuse C-4 through C-7 takes place. Slight improvement after wards. I am able to lift my legs slightly off the table. I will shorten this as it is going to long. Not much luck since with the medical community. My legs developed this terrible global like pain with sensations of insects crawling all through them both. No relief at that time. My right arm hurt like the devil especially my center three fingers. The legs got worse till I actually looked into having them removed. My family said no to that. I am now glad they did. I went through many Doctors. None seem to believe this pain even exhists. It is all to real. You have to keep looking no matter what or how long it takes till you find a Doctor that will listen. I have tried I think every drug on the planet for pain control. The side effects at times equal the pain. 11 or so years have gone by for me with still no diagnoses. I believe I have RSD. But time above all else has helped me the most along with prayer. When you develope RSD you will eventually find God. If not sooner than later. Pain control is tough. The Doctors are afraid to give out the meds in doses that are strong enough to work for us. Yes, they all think you are selling it. Grumble Grumble. I am a lot better now. This last year I can walk correctly instead of like Forrest Gump as a child. I get tired very fast and the pain comes yet but not as bad now. I have learned to live with the problem best I can. I currently only take 40 mg hydrocordone daily. It is ok as long as I keep my walking to a minimum. Extra walk=extra meds. I can work again finally to 8 hours a day, but rest often. I do not think I could hold this job elsewhere. I am glad it is owned by my family. My wife and I are the founders actually. My oldest son was 17 years of age when he took over my ceo operations when I was out of it. My wife and he saved the company and kept it going till I could find myself mentally and rejoin life. I got pretty mental for a few years earlier and spent some time in the ward with the other goofballs. It was actually good for me. I saw people way worse off than me. I ended up helping them and in turn it helped me. I was taking morphine 180 mg a day with hydrocordone to fill in the lows for years. Now only the 40 mg or so. Keep working the muscles, but not till it hurts to much as relief is difficult to find in your early days. I have read that after about 10 years this RSD beast tends to calm down some. In my case that is so. You might look for a 'pain clinic' and not a Dr. office. The clinics are there for the purpose of pain relief and do not flinch when you require a higher dose of morphine or such. Insurance companies will become your sworn enemy. They will only cover minimum doses. Your Doctor can help with that If you can get them to make some calls on your behalf. I also tried a spinal stimulator and 10's units. No good for me. I must go now as this is now a novel. Bye and good luck. Keep your sanity at all costs.

Peace....Keith.
P.S. When you start taking stronger drugs like morphine, fentanil (patches) you will get constipated in a very big way. I had to go to emergency because of it. I have permanent damage from it in a tender spot if you catch the drift. I take mineral oil every nite. It works every time for me and does not taste to bad either. Just don't use to much just a swallow will do. Bye.

[G0J0G0]

Thanks for sharing your story Keith, for this is all too typical, for the average RSDer sees more than 10 docs before proper DX. Keep the faith and your sense of humor, for this helps in more ways than you can imagine. Blessings to one and all, gojogo

[mrsamyhume]

Thank you very much Keith, I really appreciate you telling your story. It means alot to me to have so much support. Your insight is wonderful.

[mrsamyhume]

I have another question for whoever is listening. I have had a big problem with my gag reflex lately. Do you think that is related to the rsd or is it something else? What can I do?

[G0J0G0]

Hi Amy,
What type of problems are you having? Sometimes your meds can cause problems with your ability to swallow. I know at times I find it difficult to swallow with out anything in my mouth, especially if I have been sedintary or not moving around a lot.
But to answer the question can RSD affect your gag reflex, RSD can affect any part of your body from what I understand. One of the moderators of rsdandyou.com has RSD full body (sometimes called systemic) and her stomach is one of the most bothered areas. You might visit the site and read Patches' story. I have RSD in my foot ankle with symptoms up my leg into my hip. The burning pain and stinging can be aggravated by a bowel movement and this all started from an ankle injury. I hope this answers you inquiry, but if not fill free to inquire further. I will assist any way I can. Have a great and blessed afternoon, g0j0g0

[kfiore]

Hi, all. I have read all of your posts and, sadly, enjoyed them, knowing we are a small group and few that completely understand the disease. I, too, was diagnosed with RSD after breaking my left wrist in April 2007. It spread all through my arm to my neck and I now believe it has spread to both legs. I, too, saw many doctors before finding a pain doc who is terrific! My pain became so bad I finally had the spinal cord stimulator permanently implanted 2 months ago. What a relief for the pain I was feeling - that NO ONE understood...except maybe my husband, after I flooded him with information and knowledge of RSD symptoms and treatments. My thoughts and understanding go out to everyone afflicted with this somewhat complicated and hard to diagnose disease. It's nice to know we have a place to chat with each other.