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 10-04-2014, 10:18 PM #1
CRPSsongbird CRPSsongbird is offline
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Exclamation feel like screaming on the inside!!!

My pain is slightly better, my new Dr added 2 new meds, topemex & baclofen. It's helped with the stiffness a little and tiny bit with the burning.
But I'm getting so frustrated of being hurt by my fiancé, he's supposed to be the one person who should be there for me. Seriously, every single day, multiple times a day, he makes these little jabs and comments that make me feel so useless, or like I'm purposely trying to find a way to make things harder for him.....
I know he's having to do pretty much everything now, but I really don't have a choice! I find myself doing things I dam well know my Dr doesn't want me doing, just because I don't want to ask for help and get some kind of remark or comment he knows will hurt me. I'm getting more depressed, and hurting more with each comment and more each day.

If I could I would just pack up my stuff and leave. I have 2 problems with that. One, I would need help packing/unpacking everything and moving everything. Two, I have no where to go. I have no job, no money or savings!! Even if I did, I'd have no where to take it, my father is dead, my sister's an alcoholic on welfare with 5 kids and no extra room. My brother's living on the other side of the state and only has a one bedroom apartment. My mother's broke, jobless, living with a friend, and I'm paying for her cell phone..... I only have a few close friends and they don't have the room for both me & my daughter....
I just know I can't live like this much longer.....I really feel like I'm going to scream !! It doesn't help that my legs are throbbing and burning like crazy. Plus I have this insanely bad headache. .it feels like my head is filled with throbbing lightening behind my ears straight to behind my forehead and eyes....
I'm keep crying from the physical pain and the emotional pain then about an hour or two later I get the most intensely painful headaches. ....I just don't know what to do. Or where to go to find any measure of peace....I'm really worried that I'll never get away from this cycle of hurt and insanity....
I have no one who can Help me!!! And I just can't seem to stop crying....
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Old 10-05-2014, 12:04 AM #2
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Hey Songbird,

First.. . It's going to be okay.. I don't know the answers of how, but it will. There are times through this journey that it can all seem just a little too much.

I'm glad you were able to get some additional meds that sounds like perhaps are showing some promise at reducing symptoms.

Try and get some rest if you can, or distract yourself with a movie or book or something. Maybe a hot bath would help too. I know that the more upset your are the more symptomatic you'll be. So just anything to get you in a better space. I wish I had more to offer.

Hang in there sweetheart.
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Old 10-05-2014, 12:20 AM #3
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im sorry you're suffering so much physically and mentally. if you are going to be with bf long term you need to have a heart to heart with him, since he's hurting you so much. the only other thing is to contact the state and they will set you and daughter up with housing.
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Old 10-05-2014, 12:38 AM #4
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Sorry you are suffering so much,I know we don't want people feel sorry,we need support and help.
It's hard to find answer to so many questions in your life ,I agreed with Vrae ,try to find so relax and you will get some peace ,somehow you will get here ,and sure ,cry is in many times the best relief .let the pain ,emotions go free and try to think slowly .
Soon with faith and hope you will found the help you need ,let us know how you are doing ,we can for sure have a hand and shoulders ready we had been there is not easy but you will get through .
Blessings to you and look Inside yourself ,sure you will find the strength to get over and start again,with love Jesika .
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Old 10-05-2014, 01:47 AM #5
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CRPS definitely has it's roller coaster days. There are times where you don't think you can stand one more minute of it. Emotional stress just makes our pain worse.

Ask your PM doctor to refer you to a pain psychologist. They can be very helpful and can teach you relaxation techniques as well as give you someone to talk to.

Living in a toxic environment is not good for you or your daughter. Get on the Internet and search for state and local agencies that may be able to help you get housing. Don't worry about the packing, etc. take one step at a time and get the housing first. Call every agency you find and eventually you will find someone to help you. If you have a local free or public healthcare clinic near you they often have social workers on staff that can assist with housing. Even your daughters school guidance counselor may have resources. Don't be afraid or embarrassed to ask for help. Your health and your daughter come first. There is no shame in leaving a caustic relationship.

Have you applied for disability? It's a long process and most of the time you get rejected the first time around. If you can't work for the foreseeable future then apply. Also see what kind of welfare benefits/food stamps etc you may be qualify for. Just call those agencies- don't assume you won't qualify. If you have called before, call again you never know.

I know what that CRPS black hole of hopeless feels like. You have to take control of your life and advocate for yourself. Don't let someone else's issues intensify your suffering.

and deep breaths,
gigi
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Old 10-05-2014, 02:20 PM #6
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Being new to rsd I don't have any advice that directly applies. However, in the past few years Ive watch both of my parents suffer long agonizing deaths. When going through those experiences I always reminded myself that we can only live life a moment at a time, with my rsd I try to remind myself of that daily....so,e days I am more successful than others. However, you are never alone....you have your daughter. I'm sure that even when the pain is the worst she can make you smile. I hope you find strength to get through these rough days and comfort in knowing you are never alone.....all of us here know similar pain first hand.
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Old 10-05-2014, 09:47 PM #7
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It is ok to feel the way you do. You wouldn't be normal if you didn't. I agree with Vrae. it will be ok. I don't know how or when it will work for you. Remember this the only thing that stays the same is that every thing changes. I know when you are in pain with the crps it is not fun. It hurts not only physically but emotionally too. When you really cant stand it any more you can rant and rave and vent here just as you have done today. Screaeaeammm if you will. Hang in there sending good vibes and positive thoughts your way. I will remember you tonight in my prayers.
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Old 10-06-2014, 05:27 PM #8
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Default Rsd and understanding.

Quote:
Originally Posted by CRPSsongbird View Post
My pain is slightly better, my new Dr added 2 new meds, topemex & baclofen. It's helped with the stiffness a little and tiny bit with the burning.
But I'm getting so frustrated of being hurt by my fiancé, he's supposed to be the one person who should be there for me. Seriously, every single day, multiple times a day, he makes these little jabs and comments that make me feel so useless, or like I'm purposely trying to find a way to make things harder for him.....
I know he's having to do pretty much everything now, but I really don't have a choice! I find myself doing things I dam well know my Dr doesn't want me doing, just because I don't want to ask for help and get some kind of remark or comment he knows will hurt me. I'm getting more depressed, and hurting more with each comment and more each day.

If I could I would just pack up my stuff and leave. I have 2 problems with that. One, I would need help packing/unpacking everything and moving everything. Two, I have no where to go. I have no job, no money or savings!! Even if I did, I'd have no where to take it, my father is dead, my sister's an alcoholic on welfare with 5 kids and no extra room. My brother's living on the other side of the state and only has a one bedroom apartment. My mother's broke, jobless, living with a friend, and I'm paying for her cell phone..... I only have a few close friends and they don't have the room for both me & my daughter....
I just know I can't live like this much longer.....I really feel like I'm going to scream !! It doesn't help that my legs are throbbing and burning like crazy. Plus I have this insanely bad headache. .it feels like my head is filled with throbbing lightening behind my ears straight to behind my forehead and eyes....
I'm keep crying from the physical pain and the emotional pain then about an hour or two later I get the most intensely painful headaches. ....I just don't know what to do. Or where to go to find any measure of peace....I'm really worried that I'll never get away from this cycle of hurt and insanity....
I have no one who can Help me!!! And I just can't seem to stop crying....
First of all I want to say we all here know how you feel when it comes to pain and emotions ..I have had RSD for 4 and a half years.I am not sure how long you have been cursed? I really feel your pain,but I also feel his and your daughters.I remember questioning my life too.I got hurt when my boyfriend and I were first living together..it was really hard dealing with pain and a new beginning in my life.I sat down and told him how I felt about my pain,and what I can do and cannot do.Just so happens he was not aware of some of the things I had told him..Sometimes we take for granted that they do.I also said to him ,,,I feel you get angry that I did not get things done,he said he understood and if I need help tell him..I am really lucky,I am now married to him.. Believe me at times we butted heads..So please think about talking before you jump out on your own...If its your daughters DAD you also need to think of her.I do not want you to take crap from him,but talking can work wonders..Good luck,best wishes...
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Old 10-08-2014, 08:06 PM #9
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Gigi gives some very good advice. You can also contact a womens shelter. You and he need to talk with each other and sometimes that is easier to do without the day to day stressors of living together. You must be able to decide if this relationship is healthy or toxic for both you and your daughter. Don't let money be the deciding factor on your future.
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Old 10-09-2014, 01:52 AM #10
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Lottie, you nailed ,I'm sure is the what she can do and so,glad you though about it,many of us have our brains so,clouded but glad you are here with us, with love ,Jesika .
Best advice I had heard lately to be honest .
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