I just wanted to vent to Wonderful People who will understand the best. Somedays everything just gets to me with this whole RSD thing. I dont have real anyone to talk to about everything that goes on. My husband and I just seperated about a month ago. He was a lousy husband before the RSD and even a lousier husband after. I have really no family other than my 2 kids who are 10 and 11(they are to young to grasp all of this). I just dont think people truly understand this hell we go through. I have been in such constant pain the last week and it seems like each day the pain just keeps spreading to a new spot. Both arms hurt so bad that I have my daughter barely rub me to try to relieve some pain but the slightest touch I bruise(I look like I'm getting beat up). Whenever any one does ask or even at work, I think people believe I'm making all this up they just dont realize. I have to work I have no choice and with my job I have to happy,happy and happy. So people think she's okay.There is not a moment that you dont have pain,sweating or some kind of problem with this RSD, it just seems never enging. I believe after awhile you learn to hide and deal with it. I use to be 130lbs and now I'm 180lbs its such a struggle. I have never wiegh that much in my life. I just see a fat women in the mirror who looks sick. I just want to cry all the time! I just wish all this could go away and I could just have one day that I felt good. It's so hard to get up ever morning, I feel all that pain and I dont get a good night sleep due to the pain. I just wish I had someone to comfort me and take some of this weight off my shoulders. And I know everyone of you understand excactly where I'm coming from. I thank everyone who reads this, just to have someone listen to me and can understand. I apologize for going on and on but thank you.
Don't ever apologize for having to vent.. We all need to do it and we are all here for you.. "hugs".. I am sorry, sounds like your going through such a tough time.. The last thing you need right now is a divorce.. I went through the samething having RSD.. The stress level of a divorce is so hard. And your trying to deal with all the emotions and your kids emotions, financial, now on top your stressing with the RSD..
The people at work.. Forget it.. They people I use to work with were the same way... Everyday was so hard for me.. When you looked at me I looked fine. To them thats what they see. When It was time for me to have to leave work.. The one nurse said to me.. What are you going to do all day? Sitting around makes things worse. Well I don't have just a knee injury ( thats what she had).. Its hardly the same.. I have RSD honey, do you think I don't want to work?, (thats what I felt like saying).. I was a single mom too at this point.. It was tough.. When I did leave, you think you have friends at work.. yea right..Nobody called to see how I was.. It hurt alot.. Me being in the same postion, no family.. Just me and the kids.. The ex, he was an A**.. He never took the kids.. He was to busy with his girlfriend.. The one advice I can give you is.. Please go talk to someone.. Being a single mom raising two kids is hard enough.. Having RSD on top of it is really hard.. You need to try to lower you stress level. Having RSD with stress does not mix at all.. Being on an anti-depressant should help.. I didn't want to take it at first either.. It just go to the point where had to.. I had no choice.. I needed to be there for my kids.. Nichole, my thoughts are with you.. I can probably read you mind right about now.. The feeling of who would want someone with RSD.. Feeling worthless.. Just remember one thing.. Your not.. You have your kids.. They are the greatest love of all.. You brought so much memory back to me, When I was still working and I would come home my daughter would get the lotion and give me foot rubs and rub my hands.. Gosh I guess she had to be about 11 at that time.. Kids are so great.. Sometimes they take care of you better then the hubbys..LOL.
If I can give you any advise I will.. I am always here for you.. I can relate completely. You will get to the point where you don't care what the people at work think.. You are doing your best. If they can't see that. Then they are not your friends.. Is it possible for you to talk to someone? Are you already taking anti-depressants? Girl, you go ahead and cry.. its ok.. we all do it.. Have that pitty party for yourself.. Then when done.. gather yourself together and say.. I can do this.. I will fight for my kids... Lots of luck and prayers are with you.. and of course the hugs....
Hey i know exactly how you feel, Michelle offers good words of advise, she has helped me alot with dealing with rsd. You are not alone, you vent all you want to girl, it's good to let it all out especially with people who understand. I dont think for one moment your marital circumstances are helping you, your children are the ones that keep you going, you have to be strong for them, i too have an 11 year old son, it's so hard i know to function, trying to be the person you used to be, it's a big struggle trying to juggle everyday thing about, but remember you have to be strong for your kids and yourself. You work also, i think it's remarkable you are able to hold down a job, are you not able to get signed off sick by your doctor, the system i know is different from here in the UK but surely there must be something that can be done, you don't sound like you should be working to me, i really feel for you. Are you on any medication or having any treatment. I too don't understand the rsd thing, it really does take over your life, my world has been turned upside down and i feel like throwing the towel in sometimes, but i know i must be strong for my son and hubbie. I understand where your coming from i too wish the pain would go away and things could go back to how they used to be, just being able to do the things we used to take for granted like playing with our kids, socialising, working, etc i won't go on, sorry you already know that but remember we are all here to talk and comfort you the best way we can, so please please don't apologise, i am here like many others who are ready to listen to you, i send a big hug from across the ocean to you and your kids. Take care tkb, tracex
Hey girl how are you? How was your vacation.. You did go right? I hope it was a good one for you.. Everyone needs it once in a while. I was suppose to go to the beach today for a couple days with my daughter down to visit my Aunt.. She just had root canal done and is not feeling well from it.. So it was canceled..
So, how is the RSD doing? How is has your pain level been? I hope the epidural did something for you.....
I've been having some rough days.. Things are just changing with this RSD. Can't wait until I go in for that lidocaine treatment.. If that does't work.. They better give me some good drugs.. lol. cause I am tired of this.. Tomorrow is another day.. I could be totally differant..
How long is your son off for the summer? Is it just like over here in the US.. My kids go back in Sept.. It gives them about 2 1/2 months of vacation time. My start camp for school this week. I already feel like Iam going into school mode again..
Well I hope to hear from you.. I know your busy with your son.. So don't worry if you can't...
Hope your feeling better,
Figured you could you a *Big Gentle Hug*Nichole!!! Life sucks enough with RSD as it is, then throw in stress and all that other crap and it's downhill from there.
I learned early on that no matter what, if you're under a great deal of stress you HAVE to make time to do a bit of something for yourself, pampering and just a few moments somewhere to get yourself to relax a bit. I know how hard that is but believe me, a few minutes a day of just chilling out really does help. I also found writing to be helpful. Not necessarily on paper. I would pull up notepad on the computer and just type out all that frustration, rage, anger, sadness, isolation....every bit of it. Not stopping to think about what was coming out just putting it down. At the end of it I did feel somewhat better and the best thing of all, you don't save it, close the thing down, hitting No save and it disappears taking all that negativity with it! Writing has been my solace since I was a young child and I think I can honestly say it kept me from going completely crazy. Just something to think about anyway.
Your kids know and understand more than you think they do. My daughter was 9 when it started for me and no matter how hard I tried to hide what I could, I found out later she knew anyway. She's 13 now and while she's not mad at me, she loves her mom very much, she does have a lot of negative feelings toward RSD and what it has done to her mom. She participated in group counseling sessions while school was in last year at the request of her guidance counslor and it was the best decision I ever made to let her do it. Not saying that anyone else's children need to or should but I felt that all of us parents should be aware that our kids are feeling all the same feelings we are about RSD. In some ways it's tougher for them because RSD has "taken" that parent away from them. We aren't the same anymore and can't do what we used to do. I encourage my daughter to write down her feelings in a journal, to draw and let her know she can talk to me if she needs to. It's unfortunate that we underestimate our kids and what they know. I know from personal experience that even if you're only 6 or 7 years old, a kid still knows much more than anyone expects and can blame themselves for things that have nothing to do with them.
This is a perfect place to vent and let off steam! It makes you feel better sometimes to let it all out, and there are people reading this that understand, so don't apologize. My daughter is the one with the RSD and she does take medication because the chronic pain depletes your seritonin (and that leads to depression). Talk with your doctor. She has also found that swimming and just floating in a heated pool or going into a jacquzi before bed is relaxing and helps her sleep. She likes acupuncture, too, and massage therapy (she's doing other things in a chronic pain clinic, too). Find something you can do daily just for yourself because your worth it!
Thank you everyone! I would love to give hugs back to everyone. There was a couple of questions asked and here are the answers. I dont persay take a anti depressant bur I do take cymbalta for nevre pain but its main function is depression. So I figured its being used for both. As far as work, I have to work becuase no one else is going to pay my bills not even my husband helped pay the bills while we were togather or even when I was out or work for 7 weeks when I had my cervical scs. I wasnt suppose to go back to work till 8/17 but I went through the little bit of savings I had to pay the bills while my hubby just blew his money. Everyone is right about stress but its so hard when everything is just crap. Its so nice to know that I have such wonderful people that I can just let it all out and you guys do listen(read). Thank you so much. Everyone have a Bless Day!
I just want to vent.........I just feel all alone sorry.
I just want to vent.........This is gonna take me a few days to write, sorry.
I am so glad I found such wonderful people who will understand. I was diagnosed with RSD a little over 3 years ago. I fell at work in 1995 and hurt my shoulder, also carpel tunnel, (w/c had delayed for so long. w/c is a nightmare by itself.) had surgery for the carpel tunnel in 04 and that is how I ended up with RSD. I was in denial for a while thinking I can beat this, its not nothing major until I started having more and more pain, and started searching the internet, and learning what I could.
It started in my right hand and has spread to my left. GRRRRRRRRRRRRRRRR. To make a long story short.
I had a SCS implant in October of 06, generator pack in my butt cheek, well the pack slid and I had to have it removed and they put it in my stomach, the only problem is that if feels like it had turned sideways and the top edges are sticking out, like it is going to puncher and come through my skin.
Well I honestly think that the scs unit has caused my rsd to spread, IS that possible?
Some days everything just gets to me with the whole rsd,I just feel all alone I really don't have anyone to talk to, My husband is to busy with work and coaching high school sports. My friends that I had, just don't understand the pain I deal with everyday. I feel like they think I am making it all up.
Need to take a break..
Well another day of pain. My upper limbs, my back, I had all I could do just to sit up in bed today. my upper limbs and back hurt so bad, but my doctor told me you cant get RSD in your back,he told me that rsd will only spread to one other limb. well I disagree, for until I had the scs unit implant I never had a back ache in my life, and the pain and stiffness is unreal.
I am setting here crying for I just feel all alone. I don't know what to do or where to turn. I almost feel like my doctor is not listening to me, or maybe it is just me wanting him to understand just how I feel.
I say my doctor a week ago, I told him I am not sleeping. Lucky to get 2 hours a night. I get so irritable, frustrated.
I have gained weight, my memory makes me feel like I am going crazy, is this part of RSD?
Another day of pain. I just want my life back, I want to go back to work, I am or was an operator for 18 years with a phone company, but they called today and if my doctor releases me to go back to work, then I have to take a complete physical to able to come back, because as they say I have a Disease.
I have signed up for social security, in may as of yet I haven't heard anything.
I wont keep going on I don't want you to think I am being a baby but I just wanted to get some things off my shoulder and vent. I am really sorry for going on and on, but I thank each and everyone of you, that reads this.
Welcome to the board! I'm sorry you're having a tough time right now. Don't apologize for venting. You obviously needed to do that and I hope you felt a little better after doing so. That's what we're here for...to support each other.
About the memory loss...I think a lot of us have discussed at one time or another that we attribute our memory problems to the RSD. A lot of us have it and not all are taking oral meds, so it can't be just the meds causing it, you know? Just know that you're not alone in the memory loss thing. Hopefully that will make you feel a little better.
Try to hang in there. I know it's hard, but hopefully, joining this board will help you out a little. Talk soon.
Im sorry to hear about your problem its okay to vent and cry thats how you heal inside this is alot to deal with all at once your daily life, your family, and of coarse the worst part the pain trust me I know. So there is no way your not being a baby silly
I will introduce myself Im 22 yrs old and i fell at work myself three months ago and injured my right foot and went to the ER and was told to see an Orthopedic so I went and he did more X-Rays and saw nothing and just shrugged it off as a mild sprain and only gave me a week off to recovery from work so i went back to work stupid me for only 3 days now mind u im a cook so I stand all day 8-12 hrs some days thats why I say stupid me.
Anyways so I end up in ER again same doc I saw the first time (go figure) and was sent back to my doctor again he just gave me Neurotin (which by the way made me forget alot of things if that sounds familiar and made me feel like a zombie) I always had nightmares and barely slept because of the pain. He just said its a mild sprain again and sent me back to work on sit down duty which we all know is ridiculous because cooks cant sit down on the job right? Plus i was in severe pain my foot was huge from the swelling and purple, and of coarse the med I was on i cant concentrate and made me sleepy. He said there is nothing more he can do for me and is confused as to why im still in pain. Meanwhile I have been on crutches so my foot and leg have atrophy(i hope i spelled that right)
Well to make a long story short (not thats already long sorry ) I went to another doctor I had several tests done. So when I saw my new Doctor for the first time he said right away he thinks its RSD its not until my previous visit he says he is sure it is because now it has spread to my leg i can barely walk my foot is purple again and my pain has increased along with the other symptons. Im new to this website i accidentally found it when I was looking up info on RSD.
Well I sorry if my little story was long. I hope the best for U and for everyone else. Now u know your not alone as I myself had felt. I cried so many times and have gotten angry over this its frustrating but now we know thwere are other people who are going through the same pain and frustrating and that has been a comfort for me better then medicine. Thank You everyone for listening.
Nice one , i know exactly what your saying, our kids are not as daft as would seem, it's the worst thing in the world when they have to see us like this and they too have to suffer missing out on what should be. We have to be strong for them and hope one day all the suffering, pain and missery will be gone for us all. Hugs to all.tkb
Hon, I'm so sorry you are going thru all this. rsd sucks. there's just no nice way to put it. Don't ever feel as if you don't have friends. We are your friends here.
I'm with you on the weight thing. I hate it, and my mother in law always mentions my size now. I know she thinks she's helping, but she isn't. but at 87 years, she's not going to change. I don't even want to go out because of it. (also nothing fits, so I look like a slob.) but I've got so I try not to care. I am more than my body size. I'm a mother, wife,animal lover and care giver, music lover, musical theatre lover, (hate housework lol). when you need to vent or just get a hug, we are here for you. through good and bad.
**Gentle hugs for all* I ran across a chronic pain board the other night (now I can't find it.LOL!) They called anyone struggling with chronic pain "Heros". Just reading this thread made me think of it. For Hero describes everyone here!
My RSD also gets worse & the pain scale climbs as the stress climbs. I finally gave in (more like caved in) and have a therapist. A real person to vent to and to help me learn & relearn a few things to do to relieve the stress. More than that...........she's teaching me how to take care of me. To most of us thats a strange concept. I'm always worried about other people. Sure, it doesn't make the pain go away.........but it helps make it a bit more bearable.
My kids were grown when I got this D%$#@!! disease. I can not imagine how you cope with young ones. Your amazing.
Oh what a story I have and I don't know what to do.
I had my generator pack revised,on July 24th 2007 from my buttocks to my stomach. Now I have more problems.
I went to see my pain doctor on august 27th,from day one I have complained that my implant is not right, it is probing (sticking out) of my stomach, the whole top part of it is just sticking out almost like the generator pack was put in sideways instead of flat. and still today, it is still red and black and blue where it sticks out.
also I tell him my incision was really red,, he stated it was still healing, however he didn't even look at it.
well 2 days later I end up at my primary doctors with green pus, just oozing out, they put me on antibiotics and did a culture, come to find out I have a cellutilus infection of the tissues. As of today my incision is still not healed and I am still on antibiotics.
2nd I also showed my doctor where I have actual blisters from charging my generator pack, his response get used to it.
At the end of my visit I told the Dr. I want refer to the Cleveland clinic, he gets mad and say there is nothing they can do for you that I haven't done already.
well I get my report from my august visit, it states the patient wants a 2nd opinion, for her feet,
But I ask why would I want one for my feet if the rsd is in BOTH my right and left arms, shoulders and hands.
Sense I ask for a 2nd opinion He will no longer see me.
I am so tired of my doctor it is not funny, does anyone have any advise, please help
also I have an appointment on the 25th with a SSD doctor. any advice?
Thank you all for listening and your support.
Hugs to ALL