Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-19-2008, 02:03 AM #1
Franny Franny is offline
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Default Been struggling a little

Hi, I have "talked" to some of you in the past but haven`t been here in a while. It`s 2:30 in the morning and having trouble sleeping as usual. Been suffering from boo hoos and having trouble leaving the house. I haven`t been able to cry for a long time and now I cry over little things. Well almost everything, especially "dog" commercials when that certain song comes on I have to turn the channel. It`s the one about dogs needing homes and they have such sad faces! Alot of other dumb stuff too. I am going to therapy Saturday to figure this one out. Actually it`s been a long time since I have been able to cry. That started when I lost my Dad 9 years ago. He was my best friend. Now I can`t seem to turn off the water works! Also has anyone had trouble with people forgetting about your disease and the fact you aren`t the same person anymore? For everyone else it`s "business as usual" and they have pretty much have forgotten about your pain and expect you to do things you just can`t anymore. Even my hubby asks how I am when I he gets home from work. Tonight I said I am in pain just like I usually am ( becomes ALOT worse when I try to do housecleaning or laundry) , I said I am like this every night but I don`t sit here and tell you about it all the time because it doesn`t make any difference. He said, well that`s true. (Waste of time trying to get some understanding about how I feel.) Wow, that one hurt! He really doesn`t seem to understand. Anyway sorry to go on, I just had to vent. My thoughts and prayers are with all of you. Thanks for letting me get this out. (Guess I will climb down off the pity pot for now, I don`t want to fall in!) besides I know most of you have this disease ALOT worse than I do.
God Bless and much love to all of you,
Franny
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Old 09-19-2008, 08:43 AM #2
Denise R Denise R is offline
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Originally Posted by Franny View Post
Hi, I have "talked" to some of you in the past but haven`t been here in a while. It`s 2:30 in the morning and having trouble sleeping as usual. Been suffering from boo hoos and having trouble leaving the house. I haven`t been able to cry for a long time and now I cry over little things. Well almost everything, especially "dog" commercials when that certain song comes on I have to turn the channel. It`s the one about dogs needing homes and they have such sad faces! Alot of other dumb stuff too. I am going to therapy Saturday to figure this one out. Actually it`s been a long time since I have been able to cry. That started when I lost my Dad 9 years ago. He was my best friend. Now I can`t seem to turn off the water works! Also has anyone had trouble with people forgetting about your disease and the fact you aren`t the same person anymore? For everyone else it`s "business as usual" and they have pretty much have forgotten about your pain and expect you to do things you just can`t anymore. Even my hubby asks how I am when I he gets home from work. Tonight I said I am in pain just like I usually am ( becomes ALOT worse when I try to do housecleaning or laundry) , I said I am like this every night but I don`t sit here and tell you about it all the time because it doesn`t make any difference. He said, well that`s true. (Waste of time trying to get some understanding about how I feel.) Wow, that one hurt! He really doesn`t seem to understand. Anyway sorry to go on, I just had to vent. My thoughts and prayers are with all of you. Thanks for letting me get this out. (Guess I will climb down off the pity pot for now, I don`t want to fall in!) besides I know most of you have this disease ALOT worse than I do.
God Bless and much love to all of you,
Franny
Hi Franny,
I hope you don't mind if I join in your pity party for a bit.If I fall in I promise to clean up the mess.LOL
I am sorry about the boo hoos and very sorry about your loss of your Dad.
I have not been able to cry for a long time myself I think I just know that if I start I may not quit.I can live with the pain of the diseases I have but the fact that my 26 year old daughter took my grandson we helped raise from a baby until he was 6 and moved in with a man who keeps them away from everyone in what used to be our close family really hurts and for me that was when I stopped crying and stopped living too.
It's been 3 years now and we have seen them 4 times for about 30 minuets at a time.Her fiance is an acoholic , drug abuser and can't keep a job.
I am just now ready to start trying to live again.I don't go anywhere just can't make myself,don't have any friends,really miss my daughter and grandson so much it has killed a part of me its like we lost 2 kids.I know it's not the same they are alive and well (I pray) across town but they are gone out of our lives and it hurts real real bad.I was very close to my daughter before the boyfriend/fiance, now she won't even call to tell me they moved or were evicted.I only know this because my grandsons stepmother keeps me informed a little she has a heart thank goodness.
Sorry to whine and boo hoo to you but misery needs company I think....
Okay enough of that.
Let me know how it goes on Saturday It sounds like maybe you never allowed yourself to greive the loss of your Dad and it's determined to come out at any moment.Or maybe it's hormonal,but I am sure you have already thought of that.
and yes everyone forgets we are in pain its the only good thing about pain when you are not in it you don't think about it or even how someone with it may feel.I am sorry you don't have more understanding my hubby tries to but he doesn't really understand either.
Lots of Luck on Saturday
I will be thinking about you and sending prayers your way
Denise
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Old 09-19-2008, 02:55 PM #3
dealingwithtos dealingwithtos is offline
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Hi Everyone,

I also have RSD, even though I started out with TOS-thus my login.

But, I wanted to write to show some support for both of you. I feel like when you're in pain, it's very hard to deal with life's normal hard knocks. I know that your grandson is not a normal one, but I have to hope that it might be a little bit easier to deal with if you didn't have RSD. I know that the amount of pain that I'm in all the time makes me want to live like a hermit. Part - OK most of the reason why is that I know I'll suffer later if I do anything more than I'm already doing. I can't handle being in twice as much pain.

As for the crying spells, I think most of us can relate to that too. I go through "spells" of that. I guess "spells" of feeling sorry for myself too. It's just hard to pick yourself up and try to get through the day. With regard to losing a loved one (your dad or your grandson/daughter), it's important to cry. If you can just now cry, get it all out. Don't be afraid to cry. I was glad to hear that you were seeing a counselor regarding your dad. That's the first step and to be honest, the one that you should be talking to. He/she is the one that is qualified to help you through it. Franny, your husband may not understand what you feel as far as pain and how horribly painful it is, but please remember that he did ask. That's got to show something.... Atleast to me, it shows that he cares.

Denise, I do want to let you know that I also have a granddaughter (who is 2 months old). The parents just got evicted from their house. Neither of them work and also do drugs. It's very hard to just turn the cheek and allow these things to happen. I'm not sure I've accepted it yet. I've even taken down her pictures from my desk because I don't want to look at her every day and be upset about their situation and the fact that I can't do anything about it. We've already offered to have them move in with us. They declined. I think it's because he'll be too far away from his "homies" and his drug source. There will come a time where I will call child protective services, I know. It's just hard when they don't listen and don't want your help.

Please know that there is someone else out there that is dealing with RSD and can relate to your situation.

Good luck to both of you.
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Denise R (09-21-2008)
Old 09-19-2008, 04:11 PM #4
finz finz is offline
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Ohhhhhhh.......a pity party ! Can I come ?


Truthfully, this invitation has come too late for me.......meaning I was having my own pp, but my pain level and mood improved yesterday.

Hang in there ! Everyone gets really down sometimes. Your therapist will be able to help you figure out whether it's situational depression due to a specific stressor/occurrence or if you need to make changes to your surroundings or add medication for a chemical imbalance.

I hope things turn around for you soon
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Denise R (09-21-2008)
Old 09-19-2008, 08:29 PM #5
kejbrew kejbrew is offline
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Default Hang in there!

Franny & Denise,

Yes, it is very difficult when people don't understand what you are going through. I have been where you are and it does not feel good.

It was a tremendous help for me to realize that it is not that your loved ones don't care. The truth is that until this happened to me there is no way that I could have fully understood what a disaster RSD is either. Once that dawned on me I began to gather information for my wife and family to read. There are some sites that have really helpful information to be shared with loved ones.

Some people even encourage their loved ones to come on this forum to read and learn more. The point is - I don't want you to feel additional stress because it will only cause you more pain in the long run. Even if your loved ones don't understand what you are going through, most of them would not want to cause more suffering.

Hang in there. I trust that things will get better. Stay positive as much as possible.

Best regards,

EJ
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EJ

EJK from the old BrainTalk forum
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Denise R (09-21-2008)
Old 09-19-2008, 09:22 PM #6
Franny Franny is offline
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Default Struggling a little

Holy crap! You guys out there are terrific! I never really did let myself grieve for my Dad and perhaps that is part of it along with the fact that my life has COMPLETELY changed. But I want all of you kind people who cared enough to respond to my little struggle, well let`s just say I flushed the pity pot and boy alot of the "crap" I felt went down with it. THANKS! Now for your sadness Denise, I lived with a drug addict for 2 years and was so nieve. I didn`t know what the heck was going on or what he was up to! At least not until he started disappearing for days along with the money in the bank! Boy could he lie! I was stupidly in love with him. Blind as a bat for sure! Heck I was raised in a strict Italian family and I was afraid to fart in the wrong direction! Long story short, I realized his life was a mess and I didn`t want to go down with him so I got FAR away from him. Last I heard he was going to prison. He did alot of bad things and used every nickel I had but, I started over. Your daughter will get to the point of not being able to take it anymore or she will hit rock bottom. BUT then the only way for her to go will be up and Mom will be there for her and her child because we will always be there for our children. I am so sorry you are going through this and I don`t know if you have faith in God but believe me, he has really opened my eyes to alot of things. Ask him to help with this situation because I know it hurts much more than the RSD. He will give you answers and hopefully some peace. I will pray for you and just know people are pulling for you in every part of this fight!
Gos bless and I send you love!
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Old 09-19-2008, 09:50 PM #7
Franny Franny is offline
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Quote:
Originally Posted by finz View Post
Ohhhhhhh.......a pity party ! Can I come ?


Truthfully, this invitation has come too late for me.......meaning I was having my own pp, but my pain level and mood improved yesterday.

Hang in there ! Everyone gets really down sometimes. Your therapist will be able to help you figure out whether it's situational depression due to a specific stressor/occurrence or if you need to make changes to your surroundings or add medication for a chemical imbalance.

I hope things turn around for you soon
Thanks for your kind thoughts and you can come to my party anytime but let`s make them parties of sharing, caring, encouragement, hope and a little fun if possible. Wonder what we could drink. Hmm I sure do miss having my little glass of wine and the occasional martini. I have found prune juice is much more beneficial if you know what I mean! LOL Hope your pain level and mood continue to keep improving for you. A hug for you and thanks for the encouragement! Take care!
Franny
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Old 09-19-2008, 09:41 PM #8
Franny Franny is offline
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Quote:
Originally Posted by dealingwithtos View Post
Hi Everyone,

I also have RSD, even though I started out with TOS-thus my login.

But, I wanted to write to show some support for both of you. I feel like when you're in pain, it's very hard to deal with life's normal hard knocks. I know that your grandson is not a normal one, but I have to hope that it might be a little bit easier to deal with if you didn't have RSD. I know that the amount of pain that I'm in all the time makes me want to live like a hermit. Part - OK most of the reason why is that I know I'll suffer later if I do anything more than I'm already doing. I can't handle being in twice as much pain.

As for the crying spells, I think most of us can relate to that too. I go through "spells" of that. I guess "spells" of feeling sorry for myself too. It's just hard to pick yourself up and try to get through the day. With regard to losing a loved one (your dad or your grandson/daughter), it's important to cry. If you can just now cry, get it all out. Don't be afraid to cry. I was glad to hear that you were seeing a counselor regarding your dad. That's the first step and to be honest, the one that you should be talking to. He/she is the one that is qualified to help you through it. Franny, your husband may not understand what you feel as far as pain and how horribly painful it is, but please remember that he did ask. That's got to show something.... Atleast to me, it shows that he cares.

Denise, I do want to let you know that I also have a granddaughter (who is 2 months old). The parents just got evicted from their house. Neither of them work and also do drugs. It's very hard to just turn the cheek and allow these things to happen. I'm not sure I've accepted it yet. I've even taken down her pictures from my desk because I don't want to look at her every day and be upset about their situation and the fact that I can't do anything about it. We've already offered to have them move in with us. They declined. I think it's because he'll be too far away from his "homies" and his drug source. There will come a time where I will call child protective services, I know. It's just hard when they don't listen and don't want your help.

Please know that there is someone else out there that is dealing with RSD and can relate to your situation.

Good luck to both of you.
Thank you so much! You have given me food for thought! I think my husband is just a, well you know, a MAN!! Sometimes he really doesn`t know what to say and you are right, at least he asked how I felt.I am sorry about what you are going through as well as Denise! Drug abuse is rampant and I think probably more then we could ever know. You have opened your home to them in the hopes of helping them but you are right, he needs his "friends" and to hell with everybody else. I am not in your shoes but I fear for your grandbaby. You may have to call child protective services and risk losing your daughter but if something isn`t done and your grand child is in the middle of all of this you could loose her too! Remember WE have to be the voices for the children because they can`t speak for themselves. People on drugs only care about their next "fix" not getting a job and caring properly for their children. You can call with out anyone knowing it was you. Please just think about it if you feel your grandchild`s well being is in jeopardy(sp?) Your daughter may decide to turn her life around also because that "life" gets old! I will keep you in my prayers. These things you are going through, the stress, that is surely affecting the degree of pain you are suffering from! We are all here for one another and please know I care and if I could I would give you guys a great big hug! Just know you are not alone and God is near.
Thanks for being there for me!
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Old 09-20-2008, 01:01 AM #9
Denise R Denise R is offline
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Quote:
Originally Posted by dealingwithtos View Post
Hi Everyone,

I also have RSD, even though I started out with TOS-thus my login.

But, I wanted to write to show some support for both of you. I feel like when you're in pain, it's very hard to deal with life's normal hard knocks. I know that your grandson is not a normal one, but I have to hope that it might be a little bit easier to deal with if you didn't have RSD. I know that the amount of pain that I'm in all the time makes me want to live like a hermit. Part - OK most of the reason why is that I know I'll suffer later if I do anything more than I'm already doing. I can't handle being in twice as much pain.

As for the crying spells, I think most of us can relate to that too. I go through "spells" of that. I guess "spells" of feeling sorry for myself too. It's just hard to pick yourself up and try to get through the day. With regard to losing a loved one (your dad or your grandson/daughter), it's important to cry. If you can just now cry, get it all out. Don't be afraid to cry. I was glad to hear that you were seeing a counselor regarding your dad. That's the first step and to be honest, the one that you should be talking to. He/she is the one that is qualified to help you through it. Franny, your husband may not understand what you feel as far as pain and how horribly painful it is, but please remember that he did ask. That's got to show something.... Atleast to me, it shows that he cares.

Denise, I do want to let you know that I also have a granddaughter (who is 2 months old). The parents just got evicted from their house. Neither of them work and also do drugs. It's very hard to just turn the cheek and allow these things to happen. I'm not sure I've accepted it yet. I've even taken down her pictures from my desk because I don't want to look at her every day and be upset about their situation and the fact that I can't do anything about it. We've already offered to have them move in with us. They declined. I think it's because he'll be too far away from his "homies" and his drug source. There will come a time where I will call child protective services, I know. It's just hard when they don't listen and don't want your help.

Please know that there is someone else out there that is dealing with RSD and can relate to your situation.

Good luck to both of you.
Hi ,
Thanks for the response. I am so sorry about you granddaughter being around all the drugs and all that goes with it.I know you must worry about her as she is so young.I will pray for her safety I believe in angels so I will pray that her angels look after her and keep her safe.My grandson is 9 now and can tell his dad if he is not treated well that helps me a little.My grandsons father took my daughter to court to get full custody but when she showed up for the drug screen she came back clean .I heard she used a drug cover up drink.The real mess started when I caught them doing meth in my house and asked the boyfriend to move out.I gave him 30 days. I know I should have never let him move in but at first he was so very nice and had a good job and even paid us to live there.But when I asked him to move all **** broke out and she moved too.Then several days later when I picked up my grandson I noticed my daughter had a contusion on her head which moved to her eyes in 3 days her eyes black and blue + a broken blood vein in one eye. She said she had fallen in the shower but it took 30 days for the black eye,bruises and blood vein to look normal.I confronted her about being abused but she still denies it.We as a family tried an intervention but it only made things worse she blames me for the father taking her to court even tho he planed it before even telling me.I was requested to tell whether I thought she did drugs or not I could not lie to the courts. I know I have probably lost her forever.
Even though Kevin our grandson only sees us once a year he has a high IQ and is in excelerated classes (go figure both parents sure aren't) and I hope will always remember his Nana & Papaw love him.We took care of him more than 6 years.My daughter had post partum depression and so I took care of him when he was a baby he bonded to me even though I tried to get her to be more involved she would bring him to me every morning and I took care of him when she worked also.One day 3 years ago when he was 6 he asked me if his mother was an alien (this was right after they moved out) I asked what do you mean an alien he said well she stays up all night and he heard only aliens could stay up all night.It broke my heart!
If you call protective services my suggetion is to tell them you are a concerned neighbor.not a relative .Sorry so long I am from Texas and do go on a bit.Oh I also had to take down the pictures and all the craft stuff my daughter made as a kid she was the one to always make me a Mothers Day card or a picture frame.I have put them all away for now.
Soft Hugs and lots of prayers coming your way
Denise
P.S. does anyone know why crying helps I know it does but wonder why.
Does it let out more than tears a chemical maybe?A chemical that makes us hurt until its let out ? I have held back the tears all my life except those monthly crying jags when I was younger.sorry I can't even keep a P.S. short.
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