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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) |
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04-01-2014, 08:35 AM
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My eldest daughter, 22 y/o, left my room last night after a rare “my mom has CRPS” meltdown. Seems she has noticed all of the patches all over my body, more and more of my physical limitations, my coming in from the grocery store recently crying in pain grasping for meds, pill bottles that clutter my night stand as we talked, etc. She sees me getting worse, and she’s scared. I tried to comfort her. Honestly, there’s a part of me that’s scared too. Nonetheless I tried to fake it.
 I’m 10 years into this thing and I am getting so much worse. I say that ..let me rephrase that.. upon opening my eyes from surgery CRPS/causalgia was horrific. The first year was really bad. It has changed and morphed over the years. It’s never been great, but it’s been better. Since it has spread so much now, there is a lot more of me that hurts. The newest most visible is my arms/hands not working well at all. It used to be that I would drop things, or would be weak there, and get the occasional sting, but now they just straight up don’t work well at all and hurt like hell. I have to admit, it’s been a bit depressing for me too. I’m trying to not let it consume me; I tell her.. really I am. I go back to see my neuro doc this week, then need to schedule again w/ the PM doc. We are trying to figure out how to move forward w/ sympathetic blocks when my back gets so aggravated doing them. The PM wanted to do RFA and I declined. Next option please. So we will see. Anyway, kind of broke my heart to hear her say "I want my mom to be okay" <big deep sigh> me too. Sorry to be such a downer… just sharing. I know there’s hope, and I told her that.
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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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04-01-2014, 09:03 AM
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Oh Vrae. It really is a monster, this thing. I'm so sorry.
I know exactly what you mean. I'm not where you are yet, thank goodness, but the future is a scary place if I look too far ahead. I try to live for now, but the possibilities are scary, especially on those days where you don't think you can take any more of the pain, and the limitations and the sheer emotional toll of faking your way through so many days where all you want to do is curl into a ball and weep for everything you've lost, and the pain that just consumes you to your core. You can't hide everything Vrae. You shouldn't have to. Your daughter is a tough and intelligent young woman (if she is anything like her mother  ), and she will cope with what is happening to you. Don't try to exclude her from your pain, she probably knows or suspects much of what you're going through. In my not very humble opinion  I think the best thing for both of you is for her to know the truth of what you are dealing with (or as close to it as you can bear) and the information and medical stuff. Then she will know the facts.....she already knows how brave her mum is. She'll probably ask a million questions, and you might find that telling her the answers and sharing it might ease some of your lonely burden.Vrae my lovely little sprig of apple blossom  you are not superwoman. Not all the time anyhow. Your daughter is worried, and she loves you, and she probably doesn't understand how and why you are dealing with so much. So tell her. Not knowing is always worse. If it was me and my mum, I'd want to know everything I could. Children are tougher and more resourceful than we think.Hang on in there my chick. Life isn't always this bleak, and you might just have some brighter times just around the corner. Keep fighting and hoping. And being fabulous. Wish I could be there for you girl. Bram with a big understanding hug  x
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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04-01-2014, 09:05 AM
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Hello Vrae,
Gosh that must have been hard. The reality it brings when someone else not only see's our deterioration but is brave enough to verbalize it is alarming. I know it is hard to see it right now but this is a good thing for the both of you. Just like with our husbands it is important to 'check in' with our children and friends to see how they are doing. Asking them how the condition is affecting them (and being open to hear what could be painful answers)? They might need help coping and also figuring out ways where they might be able to help. Often our families and friends feel just as hopeless as we do, but when they can help in even a small way this can really help. I am so sorry your arms have gotten so much worse. Have you thought about perhaps switching gears on where they have been doing the injections and maybe having more focused and aggressive therapy for your arms? Since you have long standing CRPS but the arms are at least a newer area of pain this might be easier to get under control? Have you tried placing your lidoderm patches on your upper back and shoulder area for pain control? What about the medicated compound creams have you been able to try any of those? Sure wish there were easy answers!
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| "Thanks for this!" says: | Vrae (04-01-2014) |
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04-01-2014, 10:02 AM
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Hi vrae, It is so hard for us to show our pain and discomfort to our loved ones. Your journey and present condition is surely horrific. If you could explain "all" to your daughter you would most likely see a new ally that would help you with others where you yourself may not speak out yourself. My wife does that for me because I am such a stoic person and don't show or tell people of my pain and never have. I still have a difficult time explaining the severity of my pain level to the doctors. As a child (4 boys, 1 girl ) we were not allowed to show pain by our father. If it didn't bleed, it didn't hurt! When my rsd/crps is real bad I relocate myself away from people and isolate to my bedroom etc. When we are visiting someone and my wife sees that I am getting edgy she knows the pain is bad and says " let's go" and we go. She just says "it's time for Ron to go". I really think your daughter will do the same also as my daughter does. My daughter raised her children to know that Grampas hands and feet hurt and loud noises and fast running bother him. What a blessing vrae that is , my son did the same also.
Your (our) condition is so miserable and seems so unfair until we go to a rehab hospital for a month as I did twice and see others with different injuries that cause chronic pain. It sure made me think twice over and let me see that I am blessed with my family and two feet that hurt like well, really bad but, I can walk on them. I am surely not trying to diminish your pain and suffering at all vrae because I have had mine for almost 20 years but, look and dwell on all the blessings you have, your husband, children, those little kids that love your husband so much and will "NEVER" step on your foot again. This support group and how much you share here and help others with your years of experience. You must think positive or the pain will get you down because pain is negative 24/7 . Look for that silver lining in every cloud. You are a silver lining for us vrae. Hugs and prayers for a tolerable level of pain , I am pleased to read your posts. |
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04-01-2014, 10:33 AM
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Sorry Vrae, I got the little kids mixed up with Nanc. My injury came from a TBI traumatic brain inj. so I hope you understand.
Vrae;1060684]My eldest daughter, 22 y/o, left my room last night after a rare “my mom has CRPS” meltdown. Seems she has noticed all of the patches all over my body, more and more of my physical limitations, my coming in from the grocery store recently crying in pain grasping for meds, pill bottles that clutter my night stand as we talked, etc. She sees me getting worse, and she’s scared. I tried to comfort her. Honestly, there’s a part of me that’s scared too. Nonetheless I tried to fake it. I’m 10 years into this thing and I am getting so much worse. I say that ..let me rephrase that.. upon opening my eyes from surgery CRPS/causalgia was horrific. The first year was really bad. It has changed and morphed over the years. It’s never been great, but it’s been better. Since it has spread so much now, there is a lot more of me that hurts. The newest most visible is my arms/hands not working well at all. It used to be that I would drop things, or would be weak there, and get the occasional sting, but now they just straight up don’t work well at all and hurt like hell. I have to admit, it’s been a bit depressing for me too. I’m trying to not let it consume me; I tell her.. really I am. I go back to see my neuro doc this week, then need to schedule again w/ the PM doc. We are trying to figure out how to move forward w/ sympathetic blocks when my back gets so aggravated doing them. The PM wanted to do RFA and I declined. Next option please. So we will see. Anyway, kind of broke my heart to hear her say "I want my mom to be okay" <big deep sigh> me too. Sorry to be such a downer… just sharing. I know there’s hope, and I told her that.[/QUOTE] |
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| "Thanks for this!" says: | Vrae (04-01-2014) |
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04-01-2014, 02:37 PM
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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!
__________________
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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| "Thanks for this!" says: | PamelaJune (04-01-2014) |
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04-01-2014, 04:03 PM
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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.
 KimA |
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| "Thanks for this!" says: | Vrae (04-01-2014) |
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04-01-2014, 04:52 PM
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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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04-01-2014, 09:44 PM
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Quote:
Side note - I know your dr is discussing sympathetic blocks with you, did you guys specifically discuss stellate ganglion blocks? They might really help your upper body. They did wonders for me a long time ago. I hope you are doing a little better. I have been having a bit of a pity party myself. Met with a paint contractor this afternoon (looking for someone to paint our house inside) and while talking I had one of my pain attacks in the side of my head. It was awful and brought tears to my eyes. I was embarrased even though it was nothing I could stop from happening. It is like a hot ice pik stabbing me in my head. I had already told him about my RSD. He was kind, asked if he could do anything for me. I am just so fed up right now... Nanc
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| "Thanks for this!" says: | PamelaJune (04-01-2014) |
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04-01-2014, 10:20 PM
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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!
__________________
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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