Reflex Sympathetic Dystrophy (RSD)

[mrsamyhume]

Hi! My name is Amy and I am 28. I have a 15 year old step-daughter and 6 1/2 year old identical twin girls. I got Rsd in December of 2007. I was hurt at work. I tore my rotator cuff in my left arm and it started the disorder. Since this whole thing happened, I have been treated like I am exxagerating, I lie, and I am just trying to obtain narcotics because I am an addict. I am so frustrated. I was formally diagnosed by Dr. Culp of the Philadelphia arm and hand center on May 13,2008. Since then it has spread to my left leg and my back. Everytime I get referred to a doctor, I get told something totally different. I have read alot of information on rsd/crps on various websites. Everything that I have read seems to point to rsd/crps. I have even received stellate ganglion blocks, then I see another doctor who tells me "It's all in your head , rsd can not spread that is a myth, and can all your other doctors say quack." I just don't know what to do. I just want some straight answers. I am in so much pain I can not even sleep at night. I would love suggestions on what to do. Any would be appreciated. Thanks, Amy

[G0J0G0]

Hi Amy,
I would ask how you are, but I have the feeling I know the answer. To answer the question of RSD spreading, simply yes, not maybe but unequivocally, yes. Ask anyone that has RSD and the vast majority will affirm for it has spread in their body. Another participant on this site had RSD in her foot and ankle and bumped her wrist to keep from falling and the monster immediately spread throughout her body. I have RSD in my foot and ankle and the pain and symptoms are spreading up my leg to my hip. And the stories don't end there for MOST people have some spreading without further stimuli. So anyone that says it can't and or don't spread needs to become more familiar with RSD. Do a google search on RSD spreading and you will find a wealth of info on the issue. It will probably be in your best interest to find a pain management doc that is familiar with RSD and it's symptoms and if this one isn't immediately familiar with the monster, then keep looking. It isn't uncommon to visit 10 doctors before getting the proper diagnosis. Don't give up, be vigilant, and arm yourself with as much info as you can digest and then some. Have a blessed day and may your endeavors be richly rewarded, gojogo

[mrsamyhume]

Gojogo,
I would like to thank you for responding to my post. I really appreciate it. Thank you for the encouragement. I can really use it right now. I feel so bad for all of those out there who have suffered from this affliction for many years. I haven't even made it a year yet and I feel like I am going to go nuts from all of this! I have an appointment with an rsd specialist on September 17th! I wish it was sooner ,but I will take what I can get. Hopefully I will finally get the treatment I need. Thanks again!! Amy

[G0J0G0]

Hi Amy,
Great that you have an appt. with a specialist, for this is key. Your doc needs to know just what he/she is working and as I said before if not then keep looking. Do you have access to a line of support and or do you visit any other sites to talk with others facing this monster? I ask because we all need someone on occasion that undarstands where are and what we are going thru. You can d/load the tool bar here and access the live chat or visit any number of support sites that can help you understand just what is going on with your symptoms. Let me know and I will assist you in d/loading the tool bar... be Blessed, g0j0g0

[AuntSuzyMouse]

Find yourself a neuorologist, pain management doctor and physical therapist that understands rsd - there are also chiropractors performing cold laser therapy and fenzian treatments. You need drs who are knowledgeable of this horrific disease. You need a support group to help you through this as well as a psychologist to aid in your down till to keep the stress at bay. Any assistance I can offer, please contact me directly. - I'm here for you! Suzy

[mrsamyhume]

Gojogo and Suzy,
Thank you so much for your responses. I feel better knowing that there are other people out there with the knowledge of the disease. I feel bad knowing that both of you are suffering like I am, but I feel understood finally. Rsd is a very hard condition to explain to those who don't have it. I went on YouTube a few days ago and found a video that explains it very well. I put it on my myspace page and sent it to family members and friends. I am definetly thankful for this forum! I have seen treatments in here that I have never heard of before. I looked them up. I was shocked to learn that in my case the doctors (that diagnosed me with rsd months ago) whom I have been treating with suggest the invasive procedures! I have never even heard about the non-invasive treatments until I became a member of this forum! It's sad to think that this disorder affects millions of people and unless you have it you never hear a word of it! I am so grateful that I have kind and understanding people like you both to turn to! It means so much to me. Thank You both for taking time out to help me, Amy

[Layla]

forgot my login and will be shown as Layla as well until I have this straightened out- feel free to contact me personally and I'll do all I can to make this time in your life as painless as possible and stressless as well. Together we can overcome!!

[G0J0G0]

Hi Amy,
U R Welcome. And you are so right about the knowledge of the disease... Some food for thought. 400K to 500K people have Multiple Sclerosis and most have heard of this malady, while 1.2 - 3.0 million people have RSD/CRPS and you would be challenged to find anyone that has heard of this. I have talked to several in the medical community from doctors to nurses to medical insurance professionals that have never heard of or know what the proper treatment is. This is a crying shame and ought not to be.
And for your self if I can offer any help or any support for the demon that came to vist drop me a line and I will assist any way I can. You can d/load the tool bar from this site and sign on the chat and I we can chat further if needed. Do all of the reasearch you can and gain all of the knowledge at your disposal, for this is where you are gonna be helped the most. Look into desinsitizing the area, get involved in some PT as soon as you can, and by all means stay away from anything cold for this will aggravate the nerves quicker than lightning can strike. Speaking of, we have a t/storm passing thru so I am gonna run for now, but many pain free wishes and blessings to you and yours... g0j0g0

[mrsamyhume]

Thank you for your much needed insight Gojogo! I have a few questions I would like to ask you. I do understand that with Rsd everyone's case is different. Are you on any type of medications? If so what has worked for you and what hasn't? Is there any type of medication besides opiad drugs that help the pain? I have been on oxycontin for awhile and I would like to try something else. I am worried about it damaging my liver and kidneys. I don't need that! I have also tried amitriptaline, lyrica, and gabapentin. I had side effects that were so bad that my doc took me off of them immeadiately. I am allergic to ibuprofin,acetaminaphen,and asprin. I can't stop vomitting if I take them. I just don't know what to do. Any suggetions would be extremely appreciated. Thanks again, Amy

[G0J0G0]

Hi Amy,
Yes every case is different and everybody responds to meds differently. The complications you have are the same I struggle with. I have tried all of the above and with pretty the same results and my doc would not allow me to stay on them either. The only drug that you didn't mention was Cymbalta which is similar to some of the neurontin type of drugs and some people can tolerate it better than the before mentioned. I can't take it so I am relegated to opiates and just live with the side effects. I look at the quality of life and try to take care as well as I can else where. Oxycontin isn't as strong as some are and the s/effects aren't as harsh as some of the others so as long as you are getting relief there stick with that which is working. I hope you are doing well and your pain is being kept at bay, and if I can assist in any way feel free to ask. be Blessed, gojogo