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 04-01-2014, 02:37 PM #1
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Perhaps I made it sound slightly different than it actually was. My daughter and I talked, and we cried. She and I are very close. She is a bit older so I can talk pretty openly with her. She knows what a toll this is and has taken. As great an actress as I would like to be, there’s just no living with me and not seeing what’s going on. She just had a rare moment of crying about it to me. I tried to fake it, but I truly suck at that. I mean I try to be strong and all, but at the end of the day what you see is what you get with me. You never have to second guess where I am at with things. I guess I should have elaborated a bit on this.

I have been on a bit of a pity party about how painful my entire body has felt, and not being able to use my upper body much. Not being able to use the lower half much was bad enough. This coupled with her coming to me and crying and a few other life things going on… there are just days when it all seems to be a little much.

Krow46.. even if it was meant for Nanc, what you say is true. I have many blessings and I need to take solace in those.

Thanks guys/gals!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 04-01-2014, 04:03 PM #2
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Vrae, that is really tough. It sounds like you guys have a fantastic relationship. I think you are really brave to be so open with her and I'm sure she appreciates it. You're openness makes it possible for her to be open too and that is real gift.




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Old 04-01-2014, 04:52 PM #3
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@Vrea sorry didn't see your second post.... nm
I want to tell you a little about my mom so maybe it could help you understand how your daughter might feel from a more inside perspective.

My mom (step-mom but she was mom) died in the spring of 2009 I was 22. Around 11 I noticed something was wrong with her but no one talked to me. She had broken her back at work and worked with a broken back for over two weeks. she was a surgery room nurse, the doctor during surgery asked her to stand in the door way so he could get some air , I still don't know why he asked but he did. Those doors are electric programed to close at 90mph too keep contaminants out the handle caught her in her lower back. even after corrective surgery she was in agony every day.(not to mention my father broke his a year later) we all adapted. Three years later she came back from what should have been a quick shopping trip and collapsed, we all had seen she was losing weight and fast but she kept telling us she was okay. She wasn't she had a ulcer that the surgeon was able to put two fingers through. She died twice in the surgery room and once in the ICU bed in front of me, but she made it.
Looking back on it now I know all my cheerful fronts and blank pain face I got from her, because that is exactly what she used to do. I wish she had let me help her more, I wish she had not stressed about how it was effecting me because almost losing her effected me a whole lot more. I wished she had talked to me about the emotional side of it, the frustration the self anger the self doubt. At the very least I wish she had been honest with me about how bad it was. Maybe it would have prepared me for what happened to me not that any of us wish this... this... demon on our children.
Because she wasn't honest with me I left town for a year at twenty not knowing every second was so very precious. Eventually because life can be cruel and kind at the same time I came back, found a little apartment and spend not nearly enough time with her, I was back in town for eight months before she died.
The weekend prior had been mothers day, she finally saw my apartment , I took her to the movies and dinner. I was the last one who spoke with her , she asked me to bring a watermellon when I came over Monday after classes she died Friday night alone, probably scared, and fighting for every breath. She died from a genetic form of COPD , her body just became too weak to fight anymore.At first I thought i was angry at her from lying and leaving but I was really angry at myself for being so blind. We as the child think our parents are invincible at least until their 60 or so, life doesn't work that way. The guilt still eats at me nearly every day.

What I was hoping you would get from this is don't hide it, don't play false happy all the time talk to her without guilt be honest because yes she may be your child and she needs to be protected from somethings but this isnt one of them this is your life everyday. She will be scared but she will also cherish every moment with you.
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Old 04-01-2014, 10:20 PM #4
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Hi Llynnyia,

Thank you for sharing your story and perspective with me. I appreciate it and understand what you are saying. I too lost my parents very young. My dad from a car accident when I was 20 and my mother from breast cancer when I was 36. I got CRPS II 5 months after my mother’s death. I am also an only child. Talk about grief… whew.

I think I came off wrong in my initial post. When I said I tried to fake it. I guess I was saying I was trying not to show how scared I am, but at the end of the day, she can see right through me. Her whole life I have been strong and tough as nails. This is no longer true. She is having a hard time processing that. She said to me “I want you to be strong again.” It sounded to me like she is grieving for a former version of me. That I get. I grieve for her too from time to time. I really had adjusted for the most part to the legs being so messed up but the massive involvement of my arms/hands, upper back, neck, torso… It is taking a toll on me; I'm trying to adjust, and therefore her as well. Our whole family really.

We are navigating our way through this. She is going to be okay. We all are... as we’ve decided against the alternative. We talk; we’re open and verbal. She gets it and is mad as hell about it right now. She took her anger out on the kitchen sink full of dishes tonight. That worked for me. I will sure miss her when she moves out over the summer. She has just about finished massage school. Oh yeah, I have ask for a standing reservation! Ha!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 04-01-2014, 11:17 PM #5
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Thanks Kim and Nanc!

We do have a very close relationship and I am grateful for that. Oh Nanc I am so sorry hon. That just sounds terrible what is going on with your head… yikes. (((Big hugs))) I hope that settles down soon. That worries me too as my neck is clearly getting more involved (stiff & painful) and my face had some red cheeks this week, etc. <sigh> Again, I am hope that pain will subside quickly Nanc!

Okay, Doctor stuff..

I go see the neuro doc in the morning. And I go back to the PM doc on April 14th. So far we’ve done 1 Sympathetic Block and I responded well in that my limbs warmed up and EVREYTHING from the waist up gone! Limb warmth lasted about 30 hrs and upper body about a week. Lower body gave me grief from the first one with spasms in my legs and hips.

The second procedure was the Facet Injections / Medial Branch Block. This was for diagnostic only for my lower back. See my lower back got angry with the Sympathetic Block. It wasn’t acting like it would hold up to weeks of injections and is also contributing to the CRPS pain / dilemma.

I responded positively. Therefore they wanted to do RFA. I declined. So now what? is basically my question now. And by the way doc, this upper body stuff is getting intense and is coming on stronger now. Does that have something to do with the block(s)?
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 04-02-2014, 12:01 AM #6
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Thanks Kim and Nanc!

We do have a very close relationship and I am grateful for that. Oh Nanc I am so sorry hon. That just sounds terrible what is going on with your head… yikes. (((Big hugs))) I hope that settles down soon. That worries me too as my neck is clearly getting more involved (stiff & painful) and my face had some red cheeks this week, etc. <sigh> Again, I am hope that pain will subside quickly Nanc!

Okay, Doctor stuff..

I go see the neuro doc in the morning. And I go back to the PM doc on April 14th. So far we’ve done 1 Sympathetic Block and I responded well in that my limbs warmed up and EVREYTHING from the waist up gone! Limb warmth lasted about 30 hrs and upper body about a week. Lower body gave me grief from the first one with spasms in my legs and hips.

The second procedure was the Facet Injections / Medial Branch Block. This was for diagnostic only for my lower back. See my lower back got angry with the Sympathetic Block. It wasn’t acting like it would hold up to weeks of injections and is also contributing to the CRPS pain / dilemma.

I responded positively. Therefore they wanted to do RFA. I declined. So now what? is basically my question now. And by the way doc, this upper body stuff is getting intense and is coming on stronger now. Does that have something to do with the block(s)?
Thanks Vrae! I have been getting those ice pick type headaches for at least a couple of years. Neuro tried botox and it worked very well, only problem is that I broke out in a rash on my neck, chest, arm, within a couple of hours and this would take 3 months to wear off. Sucks...something finally helped and of course I was allergic. I go thru periods where they are very frequent and unbearable, they have eased up for a while so I guess it is time for them to start up again. Very frustrating and one of the reasons I do not drive...last time I tried one of them hit me, not good! I had a CTA, no anyerisms or anything like that. Dr says it is RSD related.

Regarding the blocks...I am not sure about the blocks causing the stuff to come on more intense or not. That didn't happen with me, but maybe some others have experienced that?? Where was your sympathetic block? I hate that it caused your back to be more aggravated. I had many stellate ganglion blocks for the upper body, cervical blocks for my neck and shoulder, many lumbar blocks
and he wanted to do the RFA but changed his mind. The two diagnostic blocks were successful and we were set to do the RFA. Dr was afraid of causing RSD in my back so he just injected steroids. I probably already told you this, sorry if I am repeating myself. I do not blame you for not getting that done, very risky.

Keep us posted on your dr appointments, good luck!
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Old 04-02-2014, 01:33 AM #7
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Hey girls

It's like a giant set of weighing scales isn't it... The Pain v Treatment. Or a heavyweight boxing match on some days.

With something as touchy and pervasive a monster as CRPS, any treatment carries risk with it, from pills to injections to surgery to physio. The eternal question is whether sttempting to stand still where you are with it is safer than trying a treatment. We have times when we can stand still, and feel like we have some control over our situation. At other times, standing just doesn't work, the monster attacks and you have to try running away from it instead, just to try and find some relief and a safe place to stand still again without it eating us alive. The sad scary part is that no one seems to quite have a cage to fit it

Vrae, all you can do is try. You've given the blocks a go, all power to you girl, scary decision. It worked, then it didn't. That's mean, and I have immense admiration that you've picked yourself up from that. Maybe you will try something else, but I'd it doesn't feel right to you then you are bang on the money NOT to do it. At the end of the day, instinct is all we have to go on, and if yours is saying 'not yet' then you are right to listen.

What a rambling load of piffling waffle lol. It's very early here and my chicken has just spent the last half hour squawking as though being stabbed repeatedly in the bum with a fork. Always a sign that it's time to start shutting them in again as the mornings get lighter! Im very impressed by our neighbours' ability to cope. I wanted to scream an obscenity out of the window myself, and she's my damn chicken!!!

My goodness I want a cup of tea.

Hang in there Vrae, Nanc, Kim, everyone. At least we aren't alone dealing with this, and that always gives me comfort. I hope today is better for everyone.

Bram x
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Old 04-02-2014, 04:45 AM #8
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Hi Llynnyia,

Thank you for sharing your story and perspective with me. I appreciate it and understand what you are saying. I too lost my parents very young. My dad from a car accident when I was 20 and my mother from breast cancer when I was 36. I got CRPS II 5 months after my mother’s death. I am also an only child. Talk about grief… whew.

I think I came off wrong in my initial post. When I said I tried to fake it. I guess I was saying I was trying not to show how scared I am, but at the end of the day, she can see right through me. Her whole life I have been strong and tough as nails. This is no longer true. She is having a hard time processing that. She said to me “I want you to be strong again.” It sounded to me like she is grieving for a former version of me. That I get. I grieve for her too from time to time. I really had adjusted for the most part to the legs being so messed up but the massive involvement of my arms/hands, upper back, neck, torso… It is taking a toll on me; I'm trying to adjust, and therefore her as well. Our whole family really.

We are navigating our way through this. She is going to be okay. We all are... as we’ve decided against the alternative. We talk; we’re open and verbal. She gets it and is mad as hell about it right now. She took her anger out on the kitchen sink full of dishes tonight. That worked for me. I will sure miss her when she moves out over the summer. She has just about finished massage school. Oh yeah, I have ask for a standing reservation! Ha!
I am sorry about your parents if my Dad was to die anytime soon, I don't think I would make it through okay. I am glad she is finding a mechanism to cope.

Your arms as well as your leg how do you adjust to that? Do you work? or can you I should say? I simply can't image the hardship. It must be so frustrating. (my primary emotion it seems now)

The grief for the former me happens a lot to me, I have changed so so much. And, some of the changes are so odd and hard to I understand. The Dancing , the horses, hiking, shopping ect I get. But I used to draw and paint, I was good to! I lost that, it holds no wonder or fun for me anymore. I lost that magic thing that created those wondrous pictures. Every time I open a sketch book nothing comes out well.

I lost every friend but one because I had changed so much and they didn't enjoy the new sedate me, we no longer had things in common."What good is an interest in hiking if you never show up to do it" quote from one of them when I asked "why I hadn't heard from her for so long and do you have any pictures from your last hike?" So now I have made new older friends , my unofficial fiancee Dave (waiting for ring still lol) is 16 years older then I am sugar daddy.

I'm not a only child and its a little complicated so I will start easy . At thirteen I permanently move in with dad and step mom Dar (she is the one who died, who really mothered me.) in that house I was the youngest by nine years with two older delinquent siblings.

I am the only child between my bio mom and dad. Bio mom has three other children one boy older(lived with his father from 3 onwards) one girl younger and the youngest a boy. so in her house I was the oldest. I basically raised those two children while bio-mom ran around doing drugs. I would repeatedly give up and move in with dad then be guilt-ed by bio-mom and move back in with her to take care of the two young ones. It was a lot of back and forth. when the abuse went from neglect and mental to full out physical I knew I couldn't do it any more.

Luckily this TMI Openness and verbal sewage wasn't one of the changes!
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Old 04-02-2014, 12:16 PM #9
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Originally Posted by Llynnyia View Post
I am sorry about your parents if my Dad was to die anytime soon, I don't think I would make it through okay. I am glad she is finding a mechanism to cope.

Your arms as well as your leg how do you adjust to that? Do you work? or can you I should say? I simply can't image the hardship. It must be so frustrating. (my primary emotion it seems now)

The grief for the former me happens a lot to me, I have changed so so much. And, some of the changes are so odd and hard to I understand. The Dancing , the horses, hiking, shopping ect I get. But I used to draw and paint, I was good to! I lost that, it holds no wonder or fun for me anymore. I lost that magic thing that created those wondrous pictures. Every time I open a sketch book nothing comes out well.

I lost every friend but one because I had changed so much and they didn't enjoy the new sedate me, we no longer had things in common."What good is an interest in hiking if you never show up to do it" quote from one of them when I asked "why I hadn't heard from her for so long and do you have any pictures from your last hike?" So now I have made new older friends , my unofficial fiancee Dave (waiting for ring still lol) is 16 years older then I am sugar daddy.

I'm not a only child and its a little complicated so I will start easy . At thirteen I permanently move in with dad and step mom Dar (she is the one who died, who really mothered me.) in that house I was the youngest by nine years with two older delinquent siblings.

I am the only child between my bio mom and dad. Bio mom has three other children one boy older(lived with his father from 3 onwards) one girl younger and the youngest a boy. so in her house I was the oldest. I basically raised those two children while bio-mom ran around doing drugs. I would repeatedly give up and move in with dad then be guilt-ed by bio-mom and move back in with her to take care of the two young ones. It was a lot of back and forth. when the abuse went from neglect and mental to full out physical I knew I couldn't do it any more.

Luckily this TMI Openness and verbal sewage wasn't one of the changes!
Wow Llynnyia, I am sorry for the struggle you have gone thru. It is so hard for me to hear of broken families and how difficult it is for the children. I can see where you have been been subject to so much adversity in your life that the "fighter" is in you to help with rsd/crps/chronic pain. It saddens me to hear your story and makes me happy to see your inner strength. You will endure Llynnyia with your credentials.

I hope your pain level is tolerable and your doctors do well by you. Remember this Llynnyia; Regardless of the intensity of a bad weather day here on earth, if we climb high enough the sun is always shining! Hugs and love from one fighter to another.
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Old 04-02-2014, 01:42 PM #10
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Wow Llynnyia, I am sorry for the struggle you have gone thru. It is so hard for me to hear of broken families and how difficult it is for the children. I can see where you have been been subject to so much adversity in your life that the "fighter" is in you to help with rsd/crps/chronic pain. It saddens me to hear your story and makes me happy to see your inner strength. You will endure Llynnyia with your credentials.

I hope your pain level is tolerable and your doctors do well by you. Remember this Llynnyia; Regardless of the intensity of a bad weather day here on earth, if we climb high enough the sun is always shining! Hugs and love from one fighter to another.
Thank you, when I write my whole life down it sounds like a strange soap opera! It has so many obstacles. With all that's happened I have done fairly well for myself. I coped then and now with reading... maybe the word is obsessed with reading! last count 300 books in my house... everyone hates them when I move! My two delinquent step siblings didn't fare as well. I have this theory 'everyone has an addiction, just to what is the question'!

Sometimes I have to be reminded that I am strong inside if not outside anymore.

Today my pain is better then yesterday, I cannot predict what tomorrow might bring but I sure as heck can hope!
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