I have a question. How are everyones emotions? Like i am all over the place. one minute i will be just fine then the next im bawling for no freakin reason. Its crazy. and i dont understand it. The littlest thing can set me off. to the point where i cannot stop crying. I dont know what to do anymore, i know the people around me see it. and im sure theyre tired of it too. everythings gotten to be to much. i mean if the dog wont stop barking or something like that i just start crying like crazy. I feel bad making other people put up with this when its my problem. please tell me im not alone in this!
Amber

neverenough915, (Amber)

I go through the same thing. I believe it is because of the pain taking such a toll on our bodies. I can take one little thing that upsets me, and all of sudden, I am crying and thinking about it for days. The crying does not help me, it makes the pain worse, but sometimes just crying lets some of the emotions go, you know?

I made a to-do list yesterday of topics to bring up on my RSD forum and "emotions" happen to be on that list. Please know that you are not alone!
:angel:

Marie

I understand what you mean..Not only would I start crying, but I was getting so mad at nothing...things that would make me smile before brought about such a temper. I told my doc and he said no problem. He put me on Cymbalta. It really seems to help. talk about being mellow. I don't think I could drive as I'm afraid that it would take me too long to respond and realize that there is a problem. I am on 30 mg. but tomorrow nite I up it to 6o. we'll see what happens to me then. talk to you doc. he should be able to give you something that will even you out. hope that works.
mary

Hey Everyone,
Yes totally normal behavior. Mary I am on 120mg of Cymbalta and I still cry. They put me on it for nerve pain but I think it is helping more with the depression. I tried to lower it and that was bad. I melted. I have more mood swings than I can even handle. We are all going through so much and it is so hard to digest. My kids keep me even keeled. I try to stay sane. If I snap I say mom's in pain and I am frustrated it is not you. They even call me on it and say mom do you hurt right now are you frustrated? It makes me really sad but they are living it too and it is good for them to know I am trying and we are all doing the best we can as a family. That is all we can do right. We are being tested and if I fail I want to fail trying my hardest...good luck everyone...Nikki :eek:

Thanks guys for letting me know im not alone. like just reading what you guys wrote made me want to cry. ive been working up at my friends machine shop, which is nice because she owns it and understands my situation. so if i need to go lay down or something she doesnt have a problem with it. but the stressful part is that it makes it twice as embarrassing and difficult when i make a mistake. like today i but an invioce under the wrong company name and when i had to go tell her, i just started beating myself for it and of course started crying. which then made her ask what was going on and i had to tell her i didnt know what the h*** was wrong. then you just feel stupid for crying for something that is not a big deal. (lol i dont think we are allowed to cuss??? lol) but its is frusterating because its not just you dealing with it its everyone around you too thats dealing with it. i love working up there but its so frustrating, i feel like i should know and be able to do more than i can which doesnt make any of the emotions stuff better. i just beat myself up even more.
i have tried cymbalta before and it didnt help me any. ive tried a few other things too. right now im on wellbutrin, i just dont take it like im supposed to. for me the fact that i would have to admit i was depressed is very hard. for some reason in my mind i feel like less of a person. i know i need to take it because it will help but whether i forget or my stupid pride gets in the way i just dont. i know its stupid i just cant help it. thanks again everyone im glad i have you guys, i would go completely crazy if i didnt have you all. thanks
amber

i take the med at the same time every day. I do that only because I go to bed at 8:00pm, and that is when I take most of my meds. Otherwise, I would also forget. don't be hard on yourself. Try to take the meds as you should. It does take some time for them to work. I've just finished my last day on 30 mg of cymbalta. I start on 60 tonight. I know I will sleep all day tomorrow, most of the day thur, then part of the day fri. then I will be pretty ok. Of course, 30 mg is good, I figure at 60, I will put on yellow robes, go to the airport, and start singing and dancing. It really has mellowed me out. I hope you find something that will work. just take it as you should and it may work. (yes I am a mom, can't you tell with the lecture lol)
mary

My favorite emotion was anger.............I snapped at everything. Then blamed everyone else. LOL! The anti depressants did wonders. Depression is a major part of RSD. The constant pain, loss of life style........just so many losses.

Though the depression stayed with me (at various levels) The mood swings were less.

The thing is..we have to take the meds the way there suscribed,as hard as that can be. Otherwise the doc really does not know how their working. (sorry don't mean to sound like I'm lecturing. As a nurse I just couldn't let it pass:jester: .

Judie

Judie,
I was just wondering as a nurse with rsd do people in the medical profession beleive you more than the average joe? My sister's sister in law was a nurse and knew nothing about rsd she grabbed my hand and I almost beat her. Then later she apoligized to me because one of her co-workers was a nurse also and she had rsd and she came in apoligized to me for touching my hand so rough.
It was like when she saw her fellow nurse in pain and agony she beleived her but had a hard time relating to me. I hope that makes sense to you but I though it was pretty rude of her...Well I hope you are doing ok, and are you still able to work? Well have a good night...Nikki

Nikki,
The first doc I had was a real jerk, treated me like I was nuts. even after he put me in the hosp., requested a neuro consult, who reccomended Dilaudid as a pain med (he believed me). This man wanted to discharge me on Tylenol & codiene#2. I actually refused to be discharged till he complied with the neuro consult!
I was blessed. There was a ortho resident that took pity on me and ordered a cervical block. (they thought the pain was from a bulging disc). I had a follow up with this doc(anesthesiologist). He was the one who diagnosed the RSD. I later went to a pain center. With the help of online friends I avoided some of the more drastic measured.

Sorry, I'm rambeling...........no It makes no difference with docs that I'm a nurse.........if their jerks.......doesn't matter who you are! Alot of it has to do with not knowing about RSD. I would carry a packet of articles about RSD with me where ever I went. It helped. I found these boards the best way to learn!

Judie

Judie,
Yeah I guess that makes sense a jerk is a jerk is ajerk...My new pm is great he helped me so much and you can tell that he feels somewhat responsible for the spread after the stim. I told him about the healthboards and he listens to me and works with me. He never forgets our plan and to me that is all I have to look foward too. All the other docs. would tell me if this does not work we will move onto this and then the next appointment they would change up and say well no lets increase again. I hated that. Even if I told him that the medicine was making me sick and not working they would insist increasing it.
This new doc. sticks to the plan and when I ask him something or tell him how I am feeling he truly listens. I told him the other day that I really trusted him and he was like yes but I made you get the stim. I was like never have we thought it was your thought. It was the next step, it was the last step and I knew that. One thing that is great is having a great place to go that cares.They all are truly concerned and when I come they come say hi and see how I am doing. That makes all the difference. One of the nurses was crying and had to leave the room so it did not upset me. That to me is incredible. Well I am babbling, but I was just curious about how you were being treated and you know what that is really rude of them...Well have a good night...Nikki :)

Nikki,

We all babble! It's such a comfot to be able to "talk" to someone who understands. I've been missing that for a very long time. (I was major league depressed & isolating). It's good to be back. Though I have a great husband & kids (adults) Their caring is somehow not enough. I need people that REALLY know where I've been and where I'm at with this disease.

There are alot of wonderful people out there. Sometimes they need our help to understand. When I was getting a whole series of blocks at this hospital, I was amazed that the OR.nurses had alot of questiond for me about RSD. They felt ok asking case' I was a nurse too. They worked with RSD patients for a loooooooong time but no real idea of what was happening. I explained ,then brought in a bunch of articles for them to copy. They were so greatful!! I was actually asked to do a formal class on RSD for the staff. Wow, was I flattered! I'd come in early for the block, do the inservice, then be medicateds for the block! I hooered at the anesthesiologst for not doing it himself long ago! Sometimes docs are blind to patients needs from other people besides themselves!

Now whose babbling!

Hope the pain fairy can't find you tonight!

hugs
Judie:wave:

Hi Guys,

Nikki, I thought I was the only one with docs who would do what you described :). I hated when they'd tell me what the plan was and then change it and continually do that...so frustrating!

Judie, I don't think we've "met." It's nice to meet you and welcome to this wonderful board. That's great that your hospital asked you to do an inservice class. It's great that they were open to learning about it (smart, too if you ask me). EVERYONE in the medical field should know about RSD because it can affect all aspects of a person's health; not only ortho and neuro, but cardio, internal med, etc. Everyone should at least have heard about it (is that too much to ask?) It's so frustrating going to the hospital with something that has nothing to do with RSD and they ask why you're on crutches and they look at you with a blank look when you tell them "RSD." Anyway, it's nice meeting you :).

Sharon :)

Thanks for the welcome! Interesting.............We're originally from NY:) I go back 13 years. Haven't had a block in 6 years. I really am out of the loop when it comes to knowing if there's been any change out there. It certianly doesn't sound like it.

FOR ME.............I know if I did not do my own research, I would still think I had a rare fatal disease. I did my research.......the day I was diagnosed.....July 21,1994...............and found the disease was so RARE, there was a whole message board on the old Prodigy Medical Board. Found wonderful people and one of them Eric, now runs the ******* web site.........sent me a BIG pacet of RSD articles by Fedex. I was truly blessed.I did not have to go through the 4 to8 years of grief being diagnosed & treated.

I found that if I took time to educate (of course they had to be willing:dizzy: ) Most often it made my path easier. Hope I'm not repeating myself! Now that I'm 65 they no longer blame the memory probs on the RSD........now it's age. Amazing what one year cando!

Hugs

Judie

Hi Judie,

Where in NY did you live? I live on Long Island. You've had RSD for a long time too. I've had it for 21 years (was 15 when I got it) and had it for 3 years before diagnosis.

About memory loss, I always look on the positive side of things so...even though you're 65, you can always blame it on the RSD. Other 65 year olds can't do that. They HAVE to attribute it to age so that's a good thing if you ask me. You have a scapegoat :).

Have a nice weekend.

Sharon :)

Judie,
Quick question for you- The Eric you are speaking of does he have a last name that begins with P and live in Mass? Well I do no know about back then but he did a few years ago? Thanks...Nikki :)

We were from Dix Hills (1961 to 1985) then Valley Stream (1985 to 2001) I'm a dedicated Long Islander. My Son (44) moved down here 20 years ago.(1/2 way house for drugs) and my Dad moved down here in 1997. When we'd visit my son I always came home improved. I came down to help my Dad house hunt and hubby & my daughter called me crazy. First time I had spent 3+ weeks down here in the winter.

They were waiting at the airport with the wheelchair. THEY COULD NOT BELIEVE HOW WELL i LOOKED (& FELT) Hubby then tried convincing me to sell our house & move down. We did..........and it did help physically. Not mentally..............my supports were all in NY.

Hindsight is always 100%..........so I'll spare you my tale of woe.

Once agaim a long answer for a short question.

Hope you have a lesspain weekend

Hugs

Judie:wave:

Nikki,

I'm not sure. When we moved I had to toss alot of stuff. Sorry
Hugs
Judie

Hi Judie,

That's so neat. I live in Islip. My sister teaches in Valley Stream (actually, she's been on maternity leave for the past three years...had two kids, but will return in September of 2008). Small world, huh?

Sharon :)

Yup! A very small world. I went to college (first 2 years) at Suffolk Community. Would cut through Pilgrim to get there...........LOL I was one of those later students (graduated HS in 1960, & SUNY Stonybrook in 1980) boy does that make me feel old!

Judie

Hi Judie,

So...did you get your RN from Suffolk and then BSN from Stony Brook? Just guessing :). Did you work in a hospital? I was in nursing school for a while (Molloy College), but finally had to give in to the RSD when it didn't go away in the 10 years my doc kept telling me it would. Oh well. So...that's why I'm interested in talking with people who worked as nurses whenever I can. Hope you don't mind. I won't bother you too much :).

Sharon :)

Hey,
I am just butting in. My best friend just moved to NY he is a script writer for As the World Turns and is an awesome writer. He lived in CA., but they just recently moved him to NY. It amazes me what a small world it really is...
Nikki

Hi Nikki,

How neat. I guess he lives in Manhattan? Very small world.

Sharon :)

Sharon,
We are playing tag between threads I guess...Yes and I get to see him more because he is closer I am embarrassed to say I do not know where he is. I'll tell you at some random time when you will have no idea what I am talking about. I am waiting for the cherubs to go to sleep one down and one to go but it is hard to type in the dark. She was playing in the neighbors pool all day today so I have no idea how she is still up- stubborn just like me...Nikki

Hi Nikki,

You made me laugh about not knowing who you'll be talking about when you figure out where your friend lives :). How old are your "cherubs?" I have a 3-year old niece and 1-year old nephew who I adore (no kids myself). I know all too well about that stubornness. She is extremely stubborn, but so am I and her mommy (my sister) so I know where she gets it. My stubbornness isn't half as annoying as hers though :). Talk soon.

Sharon :)

Sharon,
You made me laugh too and it was bugging me so I had to get my address book. I know this may sound stupid but it says NY,NY. Not like Brooklyn or Manhattan. Do all NY addresses do that. You'll probally laugh at that but I have to tell you I have lived in my town for 32 years and still get lost. It's not like I am a ditz either I just never paid attention to the streets I would always know places by buildings or things not streets. College educated too that is the sad part- can I blame that on the rsd too?
I have a four year old and a seven year old and the four year old had a tough start and fought like crazy and was among one percent in survival from her stubborness so I attribute that to her today. I forgive so much of her obstinanace because I feel without that she would not be here and that would just have been unfathomable. My son is a sweetie. He has been helping me since he was a baby without even knowing. He was literally my right hand man. Everyone has been taking them to the beach and the movies and pools and just having fun with them because they knew I was so looking foward to that with my hand getting so good for such a short time. So anyway the kids are having a great time and I am really happy about that- we had a lousy summer last summer and it is not fair to them at all. See I am just all over the place but at least I am in the right thread emotions right?!? lol...Well Sharon have a great night...Nikki :wave:

Hey Nikki! You brought the subject right back! My emotions have been all over the place. Increased the Lyrica 2 days ago & I keep waiting for the headache to come back. I can deal with the swollen feet & legs...........the headache got the best of me! Deciding between pain & side effects is no easy battle.

Yesterday was a great day.Went to the pool & did my exercises. Took a nap...........made lunch & decided I had enough of watching hubby's butt grow to his leather chair. So I called a friend & went to the movies.........good movie...........The "something' (can't remember the first word!) Heart. With Angelena Jolie. Good movie.....great message. See it if you can manage! The Lyrica really has given me back some of ME. Awesome:blob_fire

Hugs

Judie

Judie,
Yes, The Lyrica was great for me as well. It just seems that things start off with a bang and show promise and then this monster figures a way around the medicines even when they keep uping the dosage. They finally have to just take me off because I reach the end point with them. It was never like that in the beginning though I just think it has just progressed to far and has taken too long for the treatment. Amitriptylene was my drug of choice for awhile and that was great and same thing. I hope Lyrica stays strong for you and you continue to do great. I can tell in your post that things are good and that you are up that is great. I am getting ready for surgery next week and cleaning like a madwoman and I love it. It is my stress release and calms me down. Cleaning in a wheelchair is so different because you are in one spot for a while so it gets sooo clean it is just so clean in here until the two kids, two dogs, two cats, and husband enter but hey it gives me a purpose. Glad you are doing so well. I have hope and am getting leads put in from the scs for the two legs and have started Topamax and today I just increased to 50mg so at least I am doing something. I feel like as long as I am doing something to try and better the situation then there is hope. I think the movie is a mighty heart and do not ask me how I just remembered that or where I just pulled that out of.lol...keep on having great days, I love the good news!!!...Nikki:wave:

Nikki
If you run out of things to clean you can come to my house..lol..when is the surgery? keep us posted.
Mary
:angel:

Hi Nikki,

NY, NY is Manhattan :). The rest of us have "regular" addresses. Mine is Islip, NY. It is kind of weird, isn't it? I've never thought of it before, but it is weird that their city and state is the same. I wonder if any other states have that like MA, MA or VA, VA...very interesting, huh? So...are you a Red Sox fan? I'm a Mets fan so I'm also a Red Sox fan as many Mets fans are because we hate the Yankees so much :).

That's a great story about your daughter's rough start (not great that you and she went through it, but great that she's a survivor). Kids are the best. They help you to forget about your own problems, don't they? I've always found that, anyway. I get to see my niece and nephew tomorrow...can't wait!

Talk soon.

Sharon :)

Sharon,
See you learn something new everyday!!! ( re: NY,NY ). I was not going to even bring up the Red Sox because I know some people are so serious about that but yes I love the Red Sox and it is the only sport I am into but not fanatically. If I am channel surfing I will stop and watch for sure. I love the Rocket. I have loved him since I was a little girl and my dad brought me to my first game and bought me his jersey. Some people do not understand why but to each its own right...Yes about my daughter just like the rsd it makes us the people we are I beleive god gives us what he thinks we can handle. Sometimes I think he gives me a lot more credit than I deserve but.
My children are priceless and I saved her life. The peditrician tells her that all the time too. I have always had this weird sense with my kids. I was out shoveling the driveway with my 3 yr. old son and ran in and she was in her infant seat. I told my husband to pick her up and he was like no hun she is tired she has been sick let her sleep. my hands were frozen and I was like please pick her up and finally I grabbed her and she went limp. Sharon I cannot even write anymore write now...Next
OK, weird question totally off the subject and maybe I should start a new thread have you ever gotten any funky infections? Like skin? UTI? Cold Sores? Sinus? all right in the same time period? Weird stuff is going on and I was supposed to be operated on this past Tues or this Thurs. and because I am on the 2nd actually 3rd course of antibiotics they are moving it to sometime next week and I have no idea when. The plus is I am getting some organizing done,and my back is getting rested from all the poking in my spine that they have been doing to me lately. I feel like I have been invaded by aliens. Luckily we have a room downstairs across the hall from a bathroom that I am going to be recovering in. I hate being stuck upstairs. We were going to going to my bf wedding in Vegas on 7/7/07 and we had to cancel. It was the one thing I was looking foward to. When the doc said we were doing things stat I was like can I still go to Vegas and he was like No way. I was so sad. It was literally the only wedding I have been able to make in a long time. I went to one down the road but I mean to a really reall great close friend. Like a wedding you just do not want to miss. OK I am babbling sorry Sharon have a good night...nikki:wave:

Hi Nikki,

I'm so sorry you had to cancel your Vegas trip. I remember your talking about it and how much you were looking forward to it. I'm also sorry to hear you had to postpone your surgery. The only thing I've dealt with as far as infections go is a chronic strep throat. I had it in 1998 for five months until they finally took out my tonsils. I was pretty much on antibiotics for those five months and then got fungus infections in my nails which I think were related to the antibiotics. Anyway, that's my experience, but I have heard many others with RSD talking about their immune systems being shot so I'm sure you're not alone. Feel better soon.

Sharon :)

I've kind of run out of options. If the Lyrica stops working I'm in deep poo!
Before I started the Lyrica I was major league depressed. I know we all have the feelings of helplessness & hopelessness and I always thought I could get past it. Well one day 2 months ago.............I could not get past it. I was making up my meds for the week...........and I don't think I need to go into graphic details. My dear friend called from California...........just because.......and made my hubby go give the phone to me. Well, she saved my life! I spent 3 days in ICU & left there for a psych unit. Rapid detox at it's worst!

So, no doc is going to be too happy putting me back on any pain killers. My family would be crazed! Justifiably(sp?) I scared the H@%! out of them.

Too, many meds had gone by the wayside. The morphine seemd to do the best. Lyrica beats it. Pain level generally a 5.........I can cope with that. I don't have a cloudy head (I didn't think I had one in the first place:confused: )

Sheesh..........I forgot the point of this long winded self expose'! So I'll stop babbling & go to bed!

Hugs to all.
God it's good to be "talking" to all of you!

Judie

Nikki,

If your good at organizing I can pay................:bouncing: I have a stach of bank stuff, bills etc piled high on top of the file cabinet. It's in a big closet...............filled with stuff I need to go through................like on that show.........one big box for charity another big box for garbage & a small box to keep. Problem is........I have no idea how long I'm SUPPOSED to keep things. When we m oved down here (6yrs ago) I threw out 40 years worth of saved bills, baks stuff & all the restLOL>

nighty night.
(this time for real)

Judie

Hi Judie,

Wow! What a scary thing you and your family went through, but I can understand it. I'm very glad you are here and consider myself fortunate to have met you :).

Sharon :)

Judie,
I have to say I have thought of it as an option but I have NEVER been at that scary place where you were to go so far where it went. I could not even write because it just shocked me for lack of a better word. I have seen people actually take their lives working in a jail but this is different. To be where you were makes my heart hurt for you and I am glad you are here and hope you never go to that lonely scary place again. That is just a whole different relm between thinking and doing and I hope you never hurt like that ever again. Thank god for that friend calling when they did. Things happen for reasons. I really wish we had the option if we chose after we knew people to give our personal e-mails to people through moderators. I think that it would be such a benefit if like someone clicked on this board and happened to travel in that area and wanted to meet I do not understand why we do not have that option. I wish we could do it like offline and give the moderators consent to allow someone our info. Ok enough, really I am totally not a staulker...Glad I have the opportunity to write you and share experiences with you Judie...Nikki :angel:

Thanks for your support guys! I too hope I never go back to that dark deep hole. Strange thing is I had thought about it for over 10 years. I never thought I'd get to the point of acting on it. But that hole gets deeper very slowly and I never realized how much I had pulled away from everyone & everything. Thats just the thing. You do not realize! My family thought it was the meds & did not recognise the depression. I was also good at hiding it .

I really wondered if I should tell that story.............but I thought of all the people I knew that would "think the same thoughts", becareful & educate family & friends about depression.

Enough of my spouting off. I'm very happy I'm here. I'm also very happy I met all of you! I too wish there was a way to meet. I wonder if we could set up a RSD chat room????

hugs

JudieV

judie, i think that would be a wonderful idea. that was actually what i was looking for when i ran into this. but im glad i did. but i dont know of a way to do it since your dont allowed to put websites or anything like that on here.
but anyways, i dont understand how pain can have such a hold on your emotions. you know i have been struggling with bulimia for almost 7 years now, and that takes such a huge toll on your body as well as your emotions and mental stability. but the more i think about it the more tie i find into the bulimia and the rsd. i guess i was in so much physical pain that i could not control, i had to create something within my body that i could control. if that makes any sense. it completely changes your life. i dont know that i would have started the bulimia if i wasnt in so much physical pain. its funny how things like that work. i hope everyone can find that one hope and thing to live for and just go for it, despite the pain you feel. God, said He will never give us more than we can handle right??????
Am

Just when I've thought things are really going great............pow! I get hit again...........The side effects of Lyrica have reared their ugly head. My legs are swelling & the really problimatic one is now bruising in the lower ankle & foot. The skin in that leg has atrophied and no longer stretches. When the swelling gets bad it hurts............major league! The right legs not as bad.......it just plain swells. Saw the shrink yesterday...................I thought he knew his stuff...........but he doubted me that the swelling was caused by the Lyrica.............he actually took out a book and looked it up. To top that off he told me if I had been in earlier he could have discussed it with the sales rep! It was so numbing I could not get it in my brain. I want to stay on the Lyrica.....it works...........I expected him to have alternative ways of taking it.............nope..................he told me he didn't have that much experience with the Lyrica. All of this penetrated after I got home. The more I think about it the angrier I get.

JudieV

PS. The bruising is not a new issue. My arms have been bruising at the slightest touch for almost 2 years. After 2 hematologists locally, they sent me to the University of Miami to see there's. After becoming a pin cushion they decided it was weak veins from the RSD.

JudieV,
Most of this today is all about money. Really. It is horrible. Back in the day when we all used to make fun of they had it pretty good. The witch hazel and Epsom salts and natural remedies cause the doctors to care about you not the money they make from the pharma. companies. I am really not an extremist or one of those really opinionated people I have a very open mind but truthfully that is what I have found.
I luckily have settled into some great docs. I have a brand new primary who was there on a Friday night a 9:00pm because her patients were sick...WHAT?!? Then my pm is great. He calls me back and helps me. My Neurosurgeon same way- his office staff is terrible but it is the docs. that count. Doctors are not the same they want to sell things and that is how they have to make their money. I will drop the subject but it just seems like noone knows anything about what the diseases are or the drugs they are perscribing. So my point to you is do not let it anger you that is what is going on today a lot in our medical systm. Where we live primary care docs keep having to leave because they make no money I have had no lie 7 because they have left to other states or in the hospitals. It is not about you. I am sorry I am babbling and I know it is frustrating I went through it too but I do not know how to get the words out to you... I hope you get a bit of the jist. Have a good day and I had to get off of the Lyrica too. It started working good and then went downhill...Goodluck...Nikki :D

I am so frusterated and irratated right now. my mind is going crazy as to what to do about this surgery. I have no idea how to deal with this thing again. Im crying constantly, especially right now the dog is throwing up and its just to much to handle. I dont want to live like this anymore but i cant keep going through this whole stimulator stuff. i dont know i just feel like everything is getting to me now. like my sister saying one little thing will set me off. ugh.....how do people live like this????

Sweetheart,
One tiny little step at a time. Who do you think you are wonder woman? You are climbing up a mountain right now and you are overwhelmed sit down and take a break. Less than a week ago I said I am done. I was blowing up, probably something similar to you. I was all done we do not know what road to chose because NOONE knows where or what the results are going to end up like. I bit the bullet after crying a stream of tears and chewing and spitting out a few heads, but I got my 2nd stim put in. Things are good. Will they be foreever? Who knows, but just take it easy docs. do not even know the answers you are looking for how are you supposed too? I hope start feeling better soon... Good luck and I hope you feel much better today...Nikki:angel:

Nik,
i know i need to take one thing at a time, but we all know thats a lot asier said then done. I just get so overwhelmed and then little stupid stuff just starts to get me and i blow up. i dont know. i just need help about this surgery thing but nobody on here has said anything about it. im just lost and confused about this whole thing. how did you make the choice to get a second stim implanted? i just dont know anymore???
Amber

:angel:Amber,
As far as your frustration, confusion, and questions ask away. I am on this bed for at least the next two weeks and I hate tv so nothing would please me more than to try and help a friend. We are not the same person but maybe something I could say to you could make some sense who knows. I love to help people. The reason they give you the trial is so that you can have that chance to see how it works and most of the time people are like book it sign me up. Do not freak about the brand hype. I was so scared and i think it was shawley too that was I ask a very knowledgeable doc. who dealt with them all and he said they are all the same and yet all different. None are better and he felt just as comfortable putting one brand in me than another. So you have enough to worry about- we all do, but I feel comfortable in saying they are all compatible if that is the right word.
Amber are you on an anti-depressants? w/b and ask away I would love and try to help you in anyway I can...keep on keepin' on...:angel:

Nik, thank you....well what would you do. this is the thing thats driving me crazy. I cannot stop thinking about it. just the uncertainty about not knowing if i wake up in the morning will my stimulator still work? or will i have moved wrong in my sleep and moved the leads out of place. That really scares me. But if i get it taken out will there be another means of treatment that will help me? Things have just really been getting to me again. like today i had the water still turned on for the the hose aoutside. well walking in the house lori realized it was still on and turned it off. i told her not to because i had to go out and water the flowers in like an hour. It irratated the heck out of me. And it was something so little. I dont know anymore....huh.
Amber

Amber,
Ok, you have rsd in your left arm and you got the stim and then the pain moved to your back and they do not think that is rsd? Did I get that right? I went back and quickly reviewed your posts so that I could get the bigger pic straight. Why when anything f's up after these stim's the last thing everything doc's think it could be is the stim but yet on the other hand they say a paper cut could spread it? So they can't reprogram? Do they want to replace or give you fatter leads? What about Boston Scientific? I just read that ANS gets turned off by a magnet and some girl turned it off with a magnet and pinched her finger. I asked her to explain because that freaked me out and as far as the water thing hello...Last time I checked we were humans and you are going through so much. Keep writing I have all the time and you just keep telling your kids even hours later mom's scared, she's frusterated, she's sad. I say that to my 4 and 7 year old and they understand that so well. Be honest they appreciate that so much and understand that and will respect that sooo much try it if you already haven't...love and lots and lots of hugs...Nik:angel: