 |
|
| Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
| Reply |
|
|
Thread Tools | Display Modes |
07-24-2009, 04:51 PM
|
#1 | ||
|
|||
|
Member
|
I would like to thank you all for your support and well wishes as I get ready to go to the pain clinic. I found out today that they won't let me take any of my anti-anxiety meds (which I rarely have to) but they were under the impression that I took them all the time and would have to detox off of those too. (WRONG) I only took them when I had to go through some bad stuff in my life. I haven't taken them in months but still they seem judgmental telling me that they were "bad" for me. Then why would my doctor prescribe them? I also found out that I won't be able to take my sleeping med that I have been on for years...before my rsd. I guess it will interfere with the new med that they will put me on..it is called suboxone. Anyone else on this? It is supposed to help with pain and get me off all the other meds too.
Thank you all again for being so awesome. I leave on Tues. to go and am so scared!!!! I haven't been this nervous since I had to take my state boards for nursing. I have been overdoing it cleaning my house so that while I am gone my boys won't have to do as much...now my back is killing me (herniated disc) and I am just now starting to flair again in my arms and legs. I want to thank those who responded and who sent me private messages. I know I might sound like a broken record but you all have really made a difference in my life and just when the docs start me make me feel dumb or crazy I know you will all back me up. It is good to know I am not alone and that the things I think and FEEL are real. Thanks again, Jennelle |
||
|
 Reply With Quote
|
| "Thanks for this!" says: | AintSoBad (08-01-2009), Dew58 (07-25-2009), DianaA (07-30-2009), loretta (07-31-2009), rtmcmahon631 (07-31-2009) |
|
07-24-2009, 11:24 PM
|
#2 | |||
|
||||
|
Member
|
Suboxone is not going to help the pain because it is not a pain med, it is a med given to drug addicts. You can't take any meds while on that one cause it would make you VERY sick. It's the anti-drug treatment because of the aforementioned "you'll get VERY sick" thing. Combining other prescription meds with suboxone makes a person so sick they won't think, even for a second, about taking anything.
They are making you go to this "pain" clinic because they think you are a drug addict, plain and simple. They think there is nothing wrong with you a good detox and some exercise won't cure. I'm sorry you feel like you had no choice, but I will think of you everyday and hope it won't lead where I think it will. They are all idiots to do this do to you. It's completely inhumane!! I've seen others go down this road in the last 6 years. I'll get off my soapbox now. :-) It upsets me that this kind of crap is even allowed to happen and it makes me soooooo angry! I think about you all the time and want you to know, for the zillionth time lol, I'm here and always will be. The Biggest Gushiest Hugs I Can Give! Karen
__________________
Laugh until you cry, don't cry until you laugh. Living, loving and laughing with RSD for 14 years and counting. |
|||
|
|
Reply With Quote
|
|
07-25-2009, 12:01 AM
|
#3 | ||
|
|||
|
Member
|
Jenelle,
I wish therewas something technical I could say to help you ....What comes to mind is that I hope you are able to focus on this being eventually behind you...easier said than done, I know...but please try to project ahead to when you will be done with this (ordeal..) I am hoping that the result will help you feel better...This too, shall pass... Thinking of you with lots of support Think of us on the boards for strength..  Many hugs, Hoep4thebest xo |
||
|
|
Reply With Quote
|
|
07-25-2009, 07:21 AM
|
#4 | ||
|
|||
|
Magnate
|
You know you are in my thoughts. I understand your fears and concerns. I hope you address that with them when you are there. I know when I went to the program they did not allow meds like you stated either. It was not the right program for me even they felt that way and why they sent me for the implant. Like I stated though I don't regret going. It helped get me out of bed and also a different view of my condition and what I needed to do to cope mentally and physically. Sending many thoughts
|
||
|
|
Reply With Quote
|
|
07-29-2009, 01:59 PM
|
#5 | ||
|
|||
|
New Member
|
If anyone has RSD and wants the pain to stop and their life back, you need to find a drug addict doctor in your area who can write a script for Suboxone.
I have RSD full body stage 3. I ahve been taking Suboxone for almost 1 year and I love it. It blocks all your pain and you can live a normal life and stay out of the wheelchair. So what is everyone scared about?? loosing your pain?? Having a normal life?? Kicking the narcs and opiates aside? Quite making your doctor rich and do something to help yourself! or if you all like being in pain and giving up on life, I hope you all enjoy having a pity party of poor me. Suboxone works and it's way better than living on drugs and in pain till the day you die! pkwildfire   
|
||
|
|
Reply With Quote
|
|
07-29-2009, 05:28 PM
|
#6 | |||
|
||||
|
Member
|
Quote:
Finding someone that can prescribe this is one issue. Not all of us are able to get that treatment. Some are bound by workmans comp and Doctors that control our treatment. Others may be limited by ecomonics. I do appreciate your information on the suboxone! However, I do think the " Pity Party " quote may have been unfair to many! Also, I don't think there are any of us that enjoy the pain. I have had RSD since 1989, full body and have tried many treatments throughout the years. This hasn't been an option until recently. Give us a break, please! We are all doing the best with what we each have available to us. Bests, Diana Last edited by DianaA; 07-29-2009 at 05:58 PM. |
|||
|
|
Reply With Quote
|
|
07-30-2009, 05:18 AM
|
#7 | |||
|
||||
|
Magnate
|
Quote:
I am 14 years old and have RSD in my left leg and both arms. I developed it when I was 12 years old after an ankle sprain and it spread to my arms within a matter of months. My doctor and myself have tried almost every painkiller but nothing has worked so far. Ketamine helps a little but it only dulls the pain for a little while - it never goes all together!! My Doctor has told me that there isn't much else he can do for me in the way of pain relief. I'm not on any meds at the moment as none worked. It's hard living in such pain every day knowing that you can't do anything to relieve it but I try and not have pity parties though it is extremely hard at times and many others do too!!!! I appreciate you suggesting the Suboxone but please realise that with RSD, what works for one person might not work for another and many people might have already tried it. NONE of us like living in this ammount of pain but for most of us, we haven't found anything that works!!! I hope you continue getting relief and can lead a normal life! Take care, Alison.
__________________
To the World you may be one person, but to one person, you may be the World. |
|||
|
|
Reply With Quote
|
|
07-30-2009, 09:51 PM
|
#8 | ||
|
|||
|
Senior Member
|
Quote:
The prior 2 posters were way too nice - you are a JERK for writing what you did on this board. HOW DARE YOU!! You need an attitude adjustment. My RSD is in my head, so I don't use a wheelchair. I walk an average of 4 miles a day (when was the last you did that bigshot?), trying to chase my RSD away. I rarely sit still and lying down is agony because my head hurts so badly. I challenge you to achieve what I've managed to achieve in the past year despite my diabilities and "narcs." With the pain receptors I've got going in my body I've yet to get any "high" off the meds I take, and I continue to feel a tremendous amount of pain. If I had a narcotic free option I would grab it in an instant, so that I could return to the normal life I so desparately crave for me and my husband. Why don't you take your nasty attitude and just go away? |
||
|
|
Reply With Quote
|
|
07-31-2009, 11:10 PM
|
#9 | ||
|
|||
|
Senior Member
|
Hi pkwildfire,
I don't know anyone on this board that is enjoying any pity party. I, like most everyone on here, has a relationship with their Doctor based on respect and honesty and trust. I see my Dr. once a month, I had not been sleeping until 5-6 in the am. My sleeping pills was not working at all. He had me stop the pill and ordered another med. He gave me instructions which I followed carefully. He cut my anti-anxiety med in half, and left the usuage of my vicodin up to me. I appreciate his trust and respect in me. I started sleeping 9 hours straight on the new med. Because I was getting restorative sleep, I was able to cut my vicodin to 2-3 a day, usually 2 instead of 6. I cut the anti-anxiety med one more pill to 2 a day instead of 6. Does that sound like an addict--I don't think so. He is a neurologist, psychiatrist and pharmacologist from New York-Cornell I have been seeing him for 5 years. Have had RSD 14 years, full body and internally. He has kept me mobile thru good doctoring. I was able to go off of 3200 mg. of neurotin 7 months ago. Have only had 2 minor jerks. Before was having violent dailey and nightly electric jolts going thru my body and brain. The Neurotin stopped it. I felt I could go off of it and he let me try. The right amount of meds have literally kept me alive. I have blood pressure issues due to the sympathetic nervous system-high blood pressure and para sympathetic nervous system-low blood pressure. I'm happy for you being pain free from Suboxone, but to suggest that some of us LIKE to be in pain or give up on life is the judgemental one using painful words, no one deserve to be talked to like that. Sincerely, loretta |
||
|
|
Reply With Quote
|
|
08-01-2009, 12:59 PM
|
#10 | ||
|
|||
|
Member
|
Jennelle: I just wanted to let you know that we will all be thinking about you when you go into the pain clinic! Please be strong when you are in there and make sure that you stand up for yourself and what you believe in. Remember only you can make the peace that you what to find in your body and in your mind! pkwildfire: I see that you are a one time visitor here. What do you think that you are doing coming into this caring and loving group here and saying the things that you did? Please take your hatefull and unwanted post's and go some where else! Maybe where people do not care about each other feelings every day and night. Yes we just all love the felling of having pain! How do you even deal with your inner soul? I am asking you not to come back to the RSD site never again. Take your bad feelings and go somewhere else. Breezy55
|
||
|
|
Reply With Quote
|
| Reply |
|
|
thank you all
suboxone is great no more RSd pain success
Thank you all
Linear Mode
