Ada,
I'm so sorry you are having to go thru this. I wish I could make it better for you. PM me and I'll talk to you, either here or on the phone. I also sometimes think ppl think I'm making this up. It's hard. I just don't hang with the ones that have told me that it heals itself and it gets better, and that I should be better now. That's just me. I have had the pain pump trial and once they found the meds that worked, it worked better then I could have hoped. It took my pain down from a 8-9 to a 2, maybe a 1. I get the perm unit Jan 19th. I've spoken to many many ppl who have this implanted, both for rsd and back problems. They love it,(yes there are some , very very few, who don't have luck with it). Once in you have most of your life back. I have horses and I will be able to ride them again with the pump. I have had 2 scs and they don't work very well for back pain. My rsd started in Left foot and has spread due to the scs surgeries. A lot of drs don't want to put in the pump. I've had to find a dr 3 hrs away in Md. that does it. Why??? One big answer is that with the pump you develope a relationship with your dr. It involves long term care. You know, adjusting meds, refilling the pump, etc. With the scs the dr. puts it in and once the staples are out they are done with you. they get the money and are done with you. Just give it a thought, and if you have to, call around till you find a dr that will talk to you about it, and even give you an inhospital trial to see if it works. If it does, wonderful, if it doesn't at least you know.

Hugs
Mary
PS. the pump trial didn't hurt, even surgically. the scs trial had me in pain, in bed, for 3 days before I could get up and try to walk.

This is weird, these last two posts, the first of which is mine, (which I though I lost), and reposted, they're from Ada's post.
Not Tracy's.
I see that lostmary's came here too....
Hmmm.

pete

You may have something more going on in your back then just the RSD. I would ask for some test. I woke up one morning and couldn't get out of bed due to my back. I have osteoarthritis in it and some bad disc. I spent months in PT and tried to take meds for it and couldn't do it. Don't just assume it's ony the RSD.

I do hope you try and find a councellor. We need someone to talk to when others aren't listening. Luckily, my daughter takes care of a lady with MS and me so she knows what I am going through but she didn't at first.

Somehow we have to teach our family about RSD. Ask them to come here to read or send them links about RSD so they can read about it.

Somehow we have to get past the fact that they don't want to understand it, if they don't. What I have noticed in today's world is that everyone is so consumed with what they are going through that they don't have time to learn what others are going through. People today seem to be missing a sensitivity chip. They just don't seem to care what is going on with others. Hopefully there will come a day when people get back to caring about others.
Luckily you can come here and talk to everyone here but you do need someone in person to talk to. Seek out a Councellor.

Hope you feel better soon and glad you are back.

Ada

First off I want to thank everyone for my rambling. It really means so much to me.
Yes I do have a psychiatrist and a psychologist that I see every 2 weeks for the one I talk to and the other for meds I see every 3 months. The psychologist(which is the one I talk to I think, but not sure. That is the one I and talking about) is the most wonderfullest person for me. I love her to death and wouldn't trade her for nothing. She is doing all she can to help me. I just haven't been able to tell her about my hubby yet cuz i don't see her til after the holidays so I just cry to myself and I try to do that when no one is looking. Yes I have a friend outside the family but I don't talk to her much cuz she runs a book store near where I live and that is where I see her when i go.But she is also having health issues herself right now so very hard to talk when we are both not doing to good.Don't get me wrong I love her to death and wouldn't trade her for the world either it is just hard to talk when we don't see each other very much.
As far as a support group I don't know of any around me. I will check it out.Thank you for that information. I have tried different books and I can't seem to find the right one to help me yet. If anyone has any names or ideas please help me by sharing them with me. i would greatly appreciate it.
As far as MRIs I can't get that done now because i have a scs implanted in me. I can't and haven't been able to use it for a long time due to the fact here just before I started having back trouble I tried to get the scs reprogrammed again for what seems like the umpteenth time now for along time. I had it put in in Dec. 2006 and havent been able to run it since Feb. 2007. i had a car reck then where my daughter and i got rearended by a teenager after my daughter had stopped for a bus. my scs hasn't been right since. I went to my pm doc the day after the accident knowing that there was a chance that my leads were jolted cuz the night before when I got home I turned it on and I wasn't getting stimulation where I should have. They reprogrammed the next day and it seemed ok at the office but when I got home it didn't seem right. I can't explain it. I haven't run the scs ever since. I kept calling the pm doc about it and evey time I turned around I was having to go and see the woman from medtronics to try and get it reprogrammed and it seemed ok at the office but when i would get home and turn it on it didn't seem right everytime. I couldn't figure it out. Well just before my back prob I had tried to get reprogrammed again and everytime she would try to reprogram it I felt like it was going directly to my spine and it was burning my spine like crazy and I would tell her to shut it off and tell her what was going on and I finally was sent to see my pm doc again and he did some special what he called mri on my leads and found out that my leads are not on track that they have been moved. They need to take out the old ones and replace them with new ones cuz of them being what he said in records twisted and moved up by the neck area. THe office sent an approval letter to wc to get wc to approve it and it has been well over 3 months and still haven't heard anything from them so I still sit with no replacement and no running of the scs. I don't understand wc approved of getting scs implanted but they won't approve of the upkeep? What the heck.
For my back I think my pm doc called it something to do with neuropathy sometheing. Can anybody help me by explaining to me what the word neuropathy has to do with my lower back? I don't understand what that word is.Is that a bad thing in my case or not?Is it another way of saying I have something else wrong because of this monster rsd? I am so scared with everything.I know i shouldn't freak out but it just seems that everything is bombarding me at one time and I don't know if i am strong enuff to handle it all. I am really trying but I don't know how much more weight my shoulders can handle.
I am so sensitive to so many things lately. Is that normal? I feel like a big bawl baby. Especially when I seem to be rambling on and on about my problems when you all have your own problems. I am so sorry. I guess I am just hurting so bad right now.
To know that my family don't even want to try and understand what is going on is very painful. They are suppose to be there through thick and thin so I thought. I have been no matter what my problems have been and are today,but I just got to the point where I can't take it anymore. I have tried to send my family information on my disease but whether they read it or delete it I don't know. I just know what I heard and they just don't understand so they are giving up on me. My hubby hasn't given up completely but I don't feel he loves me anymore. I just want things back to what they were before i got hurt. I know I can't have that I am who I am now and it scares me.I am so afraid of losing my husband and then having nothing. I will have my daughter because she is really trying to understand but she shouldn't have to babysit her mom. She is just 14 yrs. old. How fair is that to her? I just want back what my husband and I were like before I got injured. I just feel like emotionally he is not there but he says he loves me. Like I am so sorry for rambling like this I just feel like I am a complete mess and don't know how to get back on track so I am not so angry with my disease.I keep dropping things and I just tell my self that I am stupid or I will just blurt out "Stupid hands why did you do that? You are so stupid" How do I get back to who I was before not who I am now? Is it possible? I don't know anymore.
Thanks for listening to me rambling on. I just don't really have anyone else to talk to. I need some help and all of you seem so knowledgable and so helpful. I don't know what I would do without you.

AGAIN I AM SO SORRY!

Sincerely,
Tracy the mess

Tracy,
There is no need to be sorry, or call yourself a mess.
I'll give you one bit of advice however.
It may or not work. It will probably take some time both to master, and take effect.

There's an old saying, or maybe not so old...
"Expectation is your doorway to Disappointment".

Maybe you should try lowering your expectations of your family, and husband.
The more you complain, and stay in a negative place, the more "Helpless" they feel. Do you like to be made to feel that way? Of course not. So then maybe they retaliate?

Then, of yourself, and your body..
You do your best everyday. Your doctor and body will do as will happen.
If you have Faith, use it!
And, for heaven sakes, stop talking to your hands! They can't hear you, and it's really like being Passive Aggressive, especially if anyone is in earshot, just like you're doing more complaining.

Try this:
Absolutely stop complaining to your hubby and family, that's why you have a therapist, and us. It makes them feel useless. (Think; how do you make Them Feel?)

Accept what you can't change, I don't think very many of us are going back to 'where we were' or what we once were. I've had this since 27, I'm now 53. It's only getting worse.
But, if a friend calls and asks if I want to go out, I'll just say, sorry can I have a rain check? Or, sure, be happy to!
No negativity should be shoveled onto loved ones and friends. It's just not what they're for. (Except of course on a rare occasion, or when they ask).

This may help you Tracy, or it may anger you. I don't mean to anger you, it's only a suggestion....
But, the people whom I treat this way, actually end up becoming my Advocate! They'll speak up for me, if need be.
Because they "Understand" there's nothing they can do, except that.

love,

pete

Thank you so much Pete. You made my day today. I had to chuckle at the part where you told me to quit talking to my hands. U don't know how much i really needed that today. You made me smile. Thank you so much for that. i had to share that with my daughter and her boyfriend and they kind of chuckled at it to. They asked me if you were married and I told them no that you are having a rough go of things. I also told them about my being able to contact you and you wouldn't believe what they said. I am sharing this with you cuz i thought it make you chuckle a little. They said maybe he could be our new daddy...lol.I think i am feeling better now because you as well as the kids made me chuckle and i needed that today. YOu brightened my day today thank you so much for being such a wonderful friend.I am so lucky as others are on this site.I think God meant for me to be able to be friends with you and everybody here. Thank you so much.
As far as talking negative to my family and hubby I can explain a little more.My family I would go see and they would see my walker and I think they realize that I do have a disease but they don't know how to accept it so they just try to take the easy way out.I didn't talk negatively to my family. They seemed that they could care less about my disease as it was so I just involved myself in they're conversations but I don't laugh like I used to. My mom let me know that one. She said that when I go to her house I am not the same Tracy I once was. I used to laugh and giggle all the time and now I seem to be depressed. That may be true but I can't just flip a magic wand and make myself better its not like that. My mom wants me to smile and laugh every time I go down and I am sorry if this makes me a bad person but I can't do that all the time. My mom knows that i am not the same person I used to be but that is what she wants. I can't give that person to her because i am not that person anymore. My dad thinks that everytime I am asked to come down that I am just making up an excuse to not go down.That is not true. I told them all I can only take things one day at a time and see how i feel on that day. If it happens to be a bad day for pain then I try to stay home to settle the pain down. My mom spoke for my sisters and brother and told me that they told her that they don't know how to deal or handle with my disease therefore they just don't want anything to do with me. All that right there is just very hard for me to accept. I really try hard not to talk negative or even talk about my disease unless I am asked about it but I think the walker is a huge reminder. I could be wrong but what else is there with them not believing me? My husband has to bust his rearend everyday to try and make ends meet and to be able to make sure I have my meds and I understand that his part is not easy either. I have had conversations with him telling him that I know he is really stressed and has a lot to worry about on his end and that I really appreciate everything he does for this family. I tell him words can't say enough about how much i appreciate what he does. I tell him I love him every day,but I don't feel that when he says it that he means it.I am sorry.When you hear your own spouse tell you that they are staying out on the road and trying to stay busy when he is not on the road partially because he doesn't understand the disease and he can't handle it how am I suppose to feel? I really do love him. I just feel there is a huge distance between us and I really believe it is due to what he told me. How do I get over all that? I am trying but don't know how.Please help.

Sincerely,
Tracy the mess

Tracy,
I'm glad you got a chuckle!
Nobody here should EVER take me too serious!

Have you joined RSDSA.org?
You can tell them you're financially "behind the ball", and they'll let you join.
That way, you get a newsletter, and you can get some of their cool brochures, for your family.
They can read 'em, and deal with it as they will.
Education is a beginning to Understanding!

Also,
check out:
http://www.rsdcrpslifesavers.org/index.php

As for books, check out Amazon.com!
They have lots on RSD.


Hope that helps...
Most of all, keep your chin up around others, and cry in private.
That's what I do. (Try to anyway).
It's impossible to do always, but, it's good to strive for!!

You're a good friend Tracy!

love,
Pete

Tracy,
I think sometimes we have expectations that our family will always be there and understand our lives. But it is not reality always. So we find new friends and pray that one day our family will come around and understand what we go through. I have come to the understanding they dont get it and how sad that as a family we could grow from each experience we go through. Not everybody wants to grow and become better more compassionate people.
As far as your husband, look at it from a different side. He told you what he feels, now your job is to do what you can to validate his feelings and find ways to show appreciation. Words don't always do it. The first step in order for things to even begin to turn around is to say what we feel. And he has.We always take it in a negative way but if you could turn it into positive, however small ways, life will begin to change. God never promised us everything would be easy, but He would be there to help us and ask Him to put the correct people in your life and your husbands to help him get through this also. Take care of yourself and of your husband the best you can.

Hi Tracy,I am so sorry you are going thru this. Getting RSD and all the physical emotional changes that go with it, is a huge adjustment. You are still you-the same Tracy. You now have limitations, pain that wears on you. but their are coping skills you can use to be happy. Happiness is an inside job, not dependent on external circumstances. It's called the ''peace within'
If you are a spiritual person, you can pray for peace and joy, the fruitage of God's spirit Galations 6:7.
There are books that helps us with communication skills. The way we communicate is so important. It can make a difference from the other person receiving our message and really receiving it, or rejecting the message and viewing it as criticism. There are even classes at community college -interpersonal skills. An example would be, "when you stay away from the house, I feel lonely and really miss you." Instead of saying something like-You don't like being around me anymore-I hate that.
You are grieving just like someone grieving that last a dear marriage mate or friend. Your are grieving for what was-what you used to be like, what your marriage was like-the things you loved to do together. Perhaps, you could journal those feelings down and cry, Look for the things that you could do together NOW. If you don't like basketball and he does, learn what the game is about and watch it together-have a pizza basketball night.
Losing your hand skills is terrible- I couldn't cut my own food. or zip my clothers or botton things-peel potatoes etc. 100 treatments of physical therapy, massage therapy, including massage therapy helped me get half of the use of my hand back. Can not cut my food, dress myself, prepare potatoes etc. There is a book out Always Looking Up by Michael J Fox- he has MD and it's all about his adjustment and optisim and gratitude. He wasn't that way at first-he drank and felt sorry for himself. Now he travels, gives lectures and helps others to adjust to their circumstances.
It's tough on us and tough on our families. My daughter and I playd tennis 5 days a week, tournaments, water skiied, snow skiied, traveled to many countries and now I have full body and in a lot of pain. After 15 years-still mobile, stretch, desensitized, grateful for so many things. It's not the same with my husband, I used to run our business, but my memory inhibits me doing that. I am limited in driving due to medications. We used to go to Maui every year and water ski all summer and Arizona has a long summer. Our daughter misses our water and snow skiing days. She was 15 when I got RSD following breast surgery, benign. She is married now and her hubby does all those things =he's a doll. They have done a lot of research themselves on RSD and encourage me to keep active. He is a pilot. I've started my own business I can do from bed a lot and visit people when I feel like it. So that's been really encouraging. I see a psychiatrist that has been wonderful. When my parents died back in '73 & '81 I got into counseling for 2 plus years and helped so much.
Something extremely important to take care of is any legal issues regarding the car wreck, when you were rearended. Your SCS not functioning correctly since that accident. You need to get that documented and have an attorney handling that for you. The issues from that wreck may not even be manifest now. Not to scare you, but some people get body wide spread from SCS surgery. Are they wanting to re-do your leads? This disorder and meds are very expensive. WC is terrible to deal with. A private insurance company from an accident would be much better to deal with, if your SCS quit working because of the accident. My daughter is a court reporter and she see's it all. Sad, but true.
I read a book called, You can't Afford the Luxury of a Negative Thought " by Peter McWilliams. Besides journeling, music can lift our mood, candles, painting-even paint by numbers LOL. Writing friends, calling friends, Distraction is huge to help us get thru each day.
I'm 61, hubby 72, daughter and son in law 30. We have lived here 12 years in Arizona, have friends visit every year from Oregon, Washington. Keep in touch, we all need each other-your friend-loretta with soft hugs

Tracy~

As I read this thread.I can not help but think if others don't feel the love and friendship before they should be reading this thread..it's all in here..like Prego!! I want to add..that Tracy listen girl everything you wrote and feel is very genuine and common..I have always said the appearence is only the beginning of our troubles..Not sure if some one told me this or if I came up with it all on my own, if I did I am mighty proud of myself..but the word...."expectations"... right on Pete! I learned and feel very strongly not to place expectations on my peeps..Honest, because you will set yourself up for disappointment... they, your husband children and friends are all going thru this illness with you..at different levels due to their relationship with you..AND they are having pain just it feels different that ours... Now I am not saying our needs shouldn't be met by them just that this is devestating on them too...I too try to vent to my therapist (they make good $ to hear us out) and try to stay supportive for my peeps cuz since this RSD is so dang confusing and painful for me..it has to be to them and they need our support getting thru it just as we need theirs...We have all changed thru this..I say if we don't change then we are not being honest with each other..change for the good tho..I now look for the simple sweet things in life..most of the time they are free...I was a tennis instructor for 15 yrs...can't even walk on the court now with out my cane but remember and I always say..the love I feel in my heart and what is in my mind is still the same as prior to me becoming ill with RSD.. and that makes me feel good. RSD can't take that away... I still think I am the luckiest lady out there...I just have a larger agenda now..

You have many caring friends here...vent to us..we'll see you thru..

Keep Smilin...

A soft hug for you!