thank you all
 

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

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

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..:hug:
Many hugs,
Hoep4thebest xo

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

suboxone is great no more RSd pain success
 

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:winky::wink::grouphug:

pkwildfire
 

I am glad to hear that suboxone is working for you. It was recomended to me for pain a year ago by my therapist who knew that suboxone was recently being used for treating pain. I have also posted on this before. My brother an ER Doc had suggested this as well. I did some research at the time and posted it here. I was unable to get my Doc to prescribe suboxone. I am currently looking for a new doc and will consider this treatment when selecting a new Doc. You are however, are the first person I have heard of personally (thru this post) that has used suboxone for pain relief.
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

I'm so glad to hear that the Suboxone helps the pain for you but I agree with what Diana said about the pity party quote being a bit unfair!!! NONE of us like being in this ammount of pain and i'm sure we would all do anything we can to try and stop it but for some people like me, NOTHING works!!!!!

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.

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?

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

Thank you all
 

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 :mad::mad:

Hi Jennelle,
I don't know if you have access to the interenet while in the pain clinic, but please know we are all thinking of you. Being scared is natural when we are facing something new. Remember you made it thru the state boards for nursing! And you will be supported at the clinic. One of my best friends is a A & D counselor. She and her husband were just here for 10 days. We used to live in Arizona and used to live in Oregon. They come every other year. We enjoy the pool together and they just love to lay around, read, swim, and visit. She is one of the people on my Drs. list that I've given permission for him to speak to. I'm sure you will find people like her that you will be so comfortable around.
Please let us know when you come home from the clinic. Know we all care about you. Your friend, loretta

janelle

i hope that you can get some good out of this but like others have said it might be a ploy by who is limiting your treatment as this will "make you all better".i will keep you in my thoughts and hope that maybe this will work for you.. your so sweet hang in there

carrie

Suboxone
 

Hi,

This group is very caring, loving, understanding, and helpful. But this group does not need comment like yours. We all deal with the pain and lack of sleep every day of our lives. I was in detox Feb. of 2008 and was given Suboxone. It didn't do a thing for me. I didn't think it to be a very good drug. And what we have to rember what works for one person may not work for another. And also there are nicer ways of sharing information with each other.

Kate


(Quote)
Wink suboxone is great no more RSd pain success
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(Quote

Hi Jennelle,

http://dl2.glitter-graphics.net/pub/...vgdhk9dhdy.gif

I will not dignify the spew quoted by pink something or other...not worth my time.

love you,:grouphug:

Hi Jennelle,

I'm not sure if you have internet access on the rehabilitation program. I know when I went to the program at Great Ormond Street Childrens Hospital in London, we took the laptop with us but I wasn't able to use it too much as I was generally too tired. My mum did most of the updates for me.

I just wanted to write and say that I hope everything is going well for you and that you aren't in too much pain and are finding the program helpful!! The program I went on was h*ll but it did help a little ... without it, I would probably still be in a wheelchair now instead of being able to walk short distances. The second program I went on didn't help me at all but i'm kinda glad I did it as it gave me some good coping techniques. My PTs want me to return back there now but i'm not sure if I want to go back seeing as though the second program didn't help. My PTs at my local childrens hospital don't think it would help either as I have had LOTS of PT during the 2 years that I have had RSD and it hasn't helped that much so they think we need to explore some more invasive approaches.

I hope you didn't have too many problems getting off the pain meds. It was hard for me as my dr took me off them too soon so I had the withdrawal symptoms. Whilst I was on the program, the PTs explained to me that they wanted me to come off the meds as it has been proven that people can cope with the programs a little better if they aren't as fatigued from the meds ... not because the pain is psychological or anything!! It didn't really make that much difference to me I don't think as none of the medications helped.

Please don't be afraid to tell your doctors there if your pain becomes too much!! I was always scared to tell them and it was probably one of the worst things I did!! When I finally did tell them, it was a huge relief and they were pretty supportive and allowed me to have a break etc. It's really important they know how you are feeling so please be honest ... it doesn't make you a complainer if you're in too much pain and it's best that they know so they can try and help you!!

You are in my thoughts and prayers and i'm really hoping that this will help and give you the pain relief you need and deserve!!:hug: If you ever want to talk, please know that I am here for you always!

Look forward to reading an update when you feel up to it,
Alison

I don't know how I missed some of this thread responses.
Pkwild With rsd everyone is different and what works for one person does not for another and why I would never judge anyone on there treatment. Even when someone asks me about a clinic or doc I went to I always state it as my experience and that they may be different because I would not want them not getting relief because I did not. This group of people are some of the most positive and strong people I know who are dealing with something that could make a lot of people not. Regardless some days people do have days where they need to cry and be down and that is okay in my eyes as though they move forward soon. My mom always said there is nothing like a good cry.
Jennelle I am not sure if she was bringing a laptop. I know my last email with her her cell broke but I am going to try to call her. Like Ali said though I know for me I was very drained from the long day.

Hi Jennelle,:D

You are in my thoughts, sweet lady:hug:

http://dl2.glitter-graphics.net/pub/...wkvyvxn57t.gif

love you,
Dew:hug:

I talked to Jennelle the other night. I will let her update you as a lot was unknown. She has very long days because she is not staying there and her bf drives her 1.5 hours each way plus the program. She is such a sweet lady like so many here and I hope she and others holds to hope through the ups and downs. I also have to take my own advice. Many thoughts to all

Thank you
 

Thank you for letting us know you heard from Jennelle. If you speak to her again will you please give her my love. I send you my love and well wishes too, daniella. Blessings to you both....di