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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Michele 1:
Thank you so much for your letter. I was diagnosed with RSD after having two auto accidents in one year. Both hit in the rear. First one was a brace put inside my neck because I could not hold my head up. Was doing fine and someone hit me again three months after that surgery. Since then I have developed RSD. It is in my left upper back and down left arm. I also herniated two disks in my lower back so now I have the pain going down my right leg also. This is not RSD is sciatica. Pinched a nerve or something.
Anyways, I had and SCS implanted in February and am now tiring to adjust to this. It does help the pain but the stim has to be so high it drives me nuts. I am allergic to most of the drugs they have tried to use to help me. I canít take codeine because of anaphylactic sock, Opiates make me sick to my stomach and I vomit all day if I take them.
They have put my on Lyrica, which helps me some but does not help the pain. In the last six months the RSD has spread and is now going into the left side on my neck and my face. The spinal Cord Stimulator cannot help this because it is too high for the stim to reach. They have tried.
Seems now most of my friends have disappeared. I sometimes have a very hard time walking or even just sitting. Because of the very high pulsing of the stim that does not take all the pain away. And now dealing with the upper neck and face pain along with all the other, people I think have become afraid of me. I have found myself isolating. I stay in the house all the time and am beginning to go crazy. I hate taking meds so I stopped the antidepressants they put me on. Some days I just feel like I want to die and get this over with.
But something happened the other day that made me take a good look at myself. I am now looking for a support group for RSD in Northern New Jersey, but am not having much luck. I guess now Iíve got some anger that Iíve got to use. Anger for me is a very positive motivator and always has been. I am going to find people like me who sometimes feel like me where I donít have to feel like an outcast. I know more than likely its not going to be easy, but itís something I have to do if I want to survive.
I am not a freak I just have disease that is very mystifying and hard to deal with. Please know we are all in that boat, it is up to us whether we sink or swim. I have been sinking long enough and have now decided I am going to swim to find the rest of my life.
I wish you must luck and donít give up. We are all winners in here. Our survival shows us that. It is not easy to face our days, but something or someone inside of us keeps giving us the strength to deal with this giant.
Though itís not easy please try to keep a positive outlook. You will get your answers too on how to deal with your life.
Think out side the box.
Keep Sake :angel: :angel:
Keep sake
I can't believe how much you sound just like me. In fact it's scarey! My mum has just read some threads with me and even she was amazed and sat upright when we read yours. You say your on Lyrica, how do you feel on it? does it make you have swellings ie, feet, ankles etc, i have horendous swellings to me lower extremeties, i think the lyrica is a contributory factor, however i think the rsd has alot to do also. I started with cervical spine problems initially and 3 years on have disc herniations in lumber spine, which could be the cause of my leg problems but have been informed by pm spec my neck could also be the cause of problems. I too was violently sick on opiates, can't stand to take them, never will again! Codeine makes me a bit queezy but i can tolerate them and take them as needed about 2 -4 per day depending on severity of pain. I still take Lyrica as i feel it does take the edge off my pain particularly in my right arm and hand, but it does absolutely nothing for my legs etc, i take 300mg bd, how much do you take? I took 600mg bd early this year and had to reduce it as swellings were bad, but even though i take 300mg bd now the swellings are still bad, i don't know what to make of it all, it baffles me to be honest, i feel i can't stand it anymore at times and want to throw the towel in but it makes you think strange things at times, when its bad its bad and nothing can help it, but when you feel good no matter what you do it soon sets it all off again! I feel like a 90 year old sometimes and can't believe how this disease has taken over my life, both socially and intimately. Please reply as i am curious to know how you deal with it. Hoping your on a good day, best wishes tkb
I am on 50mg of Lyrica three times a day. I take one pill in the morning and two at night before I go to bed. I am also taking 10mg of Ambien at bedtime to help me sleep. I had to increase the Ambien to two pills, which makes it 20mg because the 10mg was not working. Scares me. I know Ambien is very addictive and Iím honestly afraid of it.
The Lyrica has not caused any swelling for me at all. I am taking Lyrica to take the edge of the SCS not for pain. Because the RSD is in my back and runs down my arm the SCS stim has to be very very high and it drives me nuts. The Lyrica has helped me somewhat tolerate the stim. I can say the SCS has decreased the pain because if I turn it off I feel like I want to die. Cannot function at all and am totally useless. But it seems like I have replaced one thing for the other. I know my PM doc has told me that Lyrica causes swelling and that he wants to keep the dose as low as he can.
I honestly like my PM doc. He has been very helpful to me over the past two years since I developed the RSD. Because I am either allergic or meds make me sick, I know it has not been easy on him. But he still works with me. To me he is a Godsend. Please find a Dr. that is going to work with you. Donít be afraid to talk to him. I am also seeing a psychiatrist twice a month and that helps. He too is great. He has helped me and still does. As I said there are times when I donít want to be here at all. When these times hit my psychiatrist increases my appointments. Although he does understand he has taught me that sometimes my own thoughts are not an option. As I said to Michelle 1, something happened to me within the last two weeks. I donít want to honestly get into it. But because of my disease and my loneliness someone took total advantage of our friendship. This made me very angry and made me realize how vulnerable I can be. Not a good thing, but it made me think of that old clichť ďLife is not always fairĒ and I am not going to let this happen to me again.
I donít know how many people on here agree with a shrink. But I am all for it. If you are having a very hard time, as we all do, maybe itís time for you to think about going to one. But make sure he is there to listen to you, not just throw meds at you. All of them can do that. My meds are left up to my PM doc.
Sorry I canít give you any more info on Lyrica, but it seems to help me and I can tolerate it so far. When and if it stops I will have to switch. This board is a great outlet and if you read it constantly we are all in the same boat. Our survival is a daily challenge and we need to know there are others out there like us.
Hope this helps you.
Think outside the box. You will find answers.
Keep Sake :angel: :angel:
Keep Sake
Do you take your Lyrica right before you go to bed? I find that if I take it then I have a very hard time falling to sleep. I try to take it an hour or more before bed. Maybe you should try that so that you don't have to up your sleeping pill. Just a thought :0) Hope things continue to go well for you.
Hoping the pain is low for all today!!
Sorry to hear of your bad experience, but won't dwell on that for your sake. You take a pretty low dose of Lyrica which i am glad for you that you can tolerate it and it works at that dosage. It does beg the question are these swellings i have due to the Lyrica or due to the pathology. I have asked this many times to my pm who also is very understanding and he thinks it is a combination of both, which doesnt help me alot really. They stopped the Lyrica earlier this year to see if the swellings went down and i didnt really know if it worked or not for me, i quickly realised it did work for me for my arm and pain, but doesnt have any profound effect on the rest of my extremity problems ( legs in particular ). I havent seen a psychologist as yet, it was mentioned the other week when i saw my pm and he said he would get me an appointment with his side kick a spec in psychology who mainly deals with patients that have chronic pain problems. As yet i havent heard anything, but i have my cervical epidural on 21st Sept so will ask then. I take amitriptylene at night,25mg which i find is enough, supposed to take x2at night, but to be honest 2 makes me feel sickly so i stick to x1, it does help to calm me down, apparantly it is not so addictive as diazepan which i used to take b4 i saw him 3rd Jan this year for first time, he stopped the diazepan straight away, which thank god had no adverse reaction on me as i had taken it for over 2 years. I also take nortriptylene during the day 2x 10mg it also helps my pain and calms me down but hasnt quite the sedative effect of the others. I continue to take the Lyrica, i think after 8 months you can safely say it does help me to a degree, i must say i agree in that i think it makes me a bit elated and if i take it too late at night say 1/2 hour b4 i go to bed i find i cant settle, so maybe that is a side effect i wasnt aware of. I still cant believe the similarity between you and me in our problems which just goes to show we are not alone, i know we feel like we are at times but i suppose thats just the way the cookie crumbles! I think my pm suspects i may be heading for some further complex treatments but thats all in the pipeline, hopefully wont need it. Anyway thanks for listening, keep in touch, its good to compare notes, all the best to you in your quest for getting better, best wishes tkbx

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