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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)

rsd will not go away

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Unread 08-28-2012, 06:06 PM   #1
jeannie1
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Default rsd will not go away

My name is Jeannie,I fell in 2010 and broke my foot.Ever since,I lost my 13 year job,my foot was burning,frozen,turning color.For 2 years I have seen everyone and anyone.Family,friends,do not understand u,and think you r over exxagerating.I cannot take it.I have taken Morphine,Percoset.oxycontin,and threw them all away/The pain remains and is getting worse.I am 48,and my husband wants to go here and there, and does npt understand,that I can't walk.They get mad at me,who has a disease.I need help
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Unread 08-28-2012, 06:21 PM   #2
alt1268
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Jeannie Welcome to Neurotalk. We have a great group here and completely understand what you are going through. I to have rsd of both feet and ankles so I can sympathize with you. Sometimes, getting your husband and family to read information or show them pictures of what rsd can do and look like can help them come around.

I am sorry about your job.


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Originally Posted by jeannie1 View Post
My name is Jeannie,I fell in 2010 and broke my foot.Ever since,I lost my 13 year job,my foot was burning,frozen,turning color.For 2 years I have seen everyone and anyone.Family,friends,do not understand u,and think you r over exxagerating.I cannot take it.I have taken Morphine,Percoset.oxycontin,and threw them all away/The pain remains and is getting worse.I am 48,and my husband wants to go here and there, and does npt understand,that I can't walk.They get mad at me,who has a disease.I need help
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Unread 08-28-2012, 10:12 PM   #3
Abbie
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Hi Jeannie,
First lest me say how sorry I am to hear that your friends & family don't
understand. I've been there, done that and to some extent still do.

I have heard that RSD can go into remission but unfortunately I have never heard of RSD completely going away. I'm not saying that it is impossible, just that I've never heard of it.

I have been battling this MONSTER going on 9yrs.....mine has spread from toe to head, including internal organ involvment. I've been on forearm crutches for the past 4yrs and I have a wheelchair for longer trips just in case.<-----I refuse to use the chair, unless I absolutely have to!!!!!!

Please understand that no two of us with RSD have the same symptoms and no two of us respond the same to the same medicines and/or treatments.

I hope find something that helps you soon.
Here is a site that might help your family understand.
www.rsdsa.org

I wish you the best,
Abbie
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Unread 08-29-2012, 08:22 PM   #4
1sadhaka
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Good advice on the link to RSDSA.ORG. they have a lot of information that they will send to you that I found very well done. There is a piece that speaks to family and friends. Also their quarterly mailings are full of up to date research and data info about CRPS. Hope you can find some helpful pieces as I found. Best of luck!
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Unread 08-29-2012, 09:47 PM   #5
painman2009
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Quote:
Originally Posted by jeannie1 View Post
My name is Jeannie,I fell in 2010 and broke my foot.Ever since,I lost my 13 year job,my foot was burning,frozen,turning color.For 2 years I have seen everyone and anyone.Family,friends,do not understand u,and think you r over exxagerating.I cannot take it.I have taken Morphine,Percoset.oxycontin,and threw them all away/The pain remains and is getting worse.I am 48,and my husband wants to go here and there, and does npt understand,that I can't walk.They get mad at me,who has a disease.I need help
hey jeannie. Im sorry that you have this beast. but you made a good move coming here. welcome . I am sorry that you have to deal with this. I can say that alot of us experience this as well. Just recently my uncle said that I should man up and stop letting my family do what I should be doing. This from a man who cannot clean his own cloths or cook his own meals.
people are just short sighted despite relationship. I have noticed that it is easier for people to pass judgment than try to understand. DR,s included.. an open mind is where we need to start. I believe it must start internally first so we may learn patience, and then we can pay it forward. As a group of sufferers we share empathy. but is it really empathy when we all really feel the pain?? we do understand each other and that is GREAT!! and the work to share sympathy and a shoulder to cry on or lean on. we share our agony wich gives us a sence of balance so we can stand up again. but the people in our lives are clueless. even after we share as much info as we can. but how much can you understand what we are going through if you do not have the experience ourselves, its like asking a man to know what its like to give birth , the best they can do is compare it to passing stones. but even then how do we know??with this information maybe we can find it easier to forgive their callousness.
It is extremely frustrating I know and if you search my posts you will see I get angry at this as well. I dont know .maybe its the new script of trazadone but right now I can see both sides a little easier. I am still frustrated by it . but thats a different thing.
I wish you well on this unfortunate ride and hope I can offer you a shoulder when you need it. and some helpful advice. but that si what the great thing about this site is, you have a large group to bounce through looking for what you need. I wish you luck and send you warm hugs .
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Unread 08-30-2012, 01:07 AM   #6
andrea puskas
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Hi Jeannie1, smiles and sympathy coming your way.
You have started a new life that is not pleasent or easy. I am in the 21 year of this circus and it is always eventful. It is very frustrating and humiliating to get thru what is supposed to be just another day.
With the pain and immobility caused by RSD it is sometimes almost impossible to get thru another day.
I hurt for you. I am 21 years with RSD. I can tell yu lies, but that is not who I am. I am a fighter for life, a daughter of a strong Mom and Dad, and will not lay down till God says it is time for me to come home.

I can share war stories with you of my 21 years, but seems you need some comfort and hugs now. There is light at the end of the tunnel, beleive me. You are strong and have been productive in life. This will give you help in learning how to live this new life. This is your new job, keeping records, fighting with the medical system and the lack of consideration that loved ones hand out without even knowing they are hurting your heart. I lost it all, family, business, everything I worked for up to the age of 42 when I sprained my ankle in 1991. It is normal to be frustrated, angry, hurt, confused, insulted by the world you once knew.

However, it is up to you as to how you handle things and you have to put your RSD needs first. If you need sleep to escape from the pain, do it.
If you can't walk good enough to do certain things, you have to sit back sometimes and just watch the rest of the world go by.
You will have to take control and do what is best for Jeannie.

You have to educate your family too. They are in the dark trying to figure out why is Jeannie so different. All she did was break her foot? You have to MAKE them read a little and help them help you by educating yourselves and
accepting the fact that this is a life sentence maybe. It is hard and will take work and thru your pain you have to carry the ball.
Just the way it goes sometimes. I have a big shoulder if you need one,
God bless you and keep you strong. RSD with LUV, Andrea.
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