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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, 10:38 PM
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Hey Bram,
You just make me smile with your ‘lil sayings.. “sprig of apple blossom“  thanks for that! and your next statement made me think of this song by Alicia Keys"Superwoman" Everywhere I'm turning Nothing seems complete I stand up and I'm searching For the better part of me I hang my head from sorrow state of humanity I wear it on my shoulders Gotta find the strength in me Cause I am a Superwoman Yes I am Yes she is Even when I'm a mess I still put on a vest With an S on my chest Oh yes I'm a Superwoman For all the mothers fighting For better days to come And all my women, all my women sitting here trying To come home before the sun And all my sisters Coming together Say yes I will Yes I can Cause I am a Superwoman Yes I am Yes she is Even when I'm a mess I still put on a vest With an S on my chest Oh yes I'm a Superwoman When I'm breaking down And I can't be found And I start to get weak Cause no one knows Me underneath these clothes But I can fly We can fly, Oh Cause I am a Superwoman Yes I am Yes she is Even when I'm a mess I still put on a vest With an S on my chest Oh yes I'm a Superwoman Ha! Lol... I’m feeling slightly better today.. can you tell? As always, thank you for being here!
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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, 10:49 PM
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#12 | |||
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And yes, there is so much more to explore to try and get this under control. The CRPS has picked up speed and aggression from the waist up. BTW, I hope you're still improving everyday!
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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, 11:17 PM
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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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| "Thanks for this!" says: | Nanc (04-01-2014) |
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04-02-2014, 12:01 AM
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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! Nanc 
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04-02-2014, 01:33 AM
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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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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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04-02-2014, 04:45 AM
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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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04-02-2014, 04:54 AM
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#17 | ||
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| "Thanks for this!" says: | Brambledog (04-02-2014), eevo61 (04-02-2014) |
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04-02-2014, 11:47 AM
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#18 | ||
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Hello again Vrae, my post was all meant for you excluding the section about the girl stepping on your foot. I know it was on Nancs' foot and that was the mistake. The whole post was to and for you.
My attempt was to share with you my own experience with my own family after my injury and the beginning of rsd. They saw me go from a workaholic to a bedridden man with no possibility of going back to work. I kept fighting it and the more I tried the more the pain would put me back in bed. Both children knew the whole of my situation because of their Mom. They understood the bad days, depression, isolation, anger, frustration, saying and doing things I didn't mean because of high doses of narcotics. They raised or are raising their children to understand my situation of pain also which is so helpful and a thorn in my side also. I have only held one of my 6 grandchildren. I could never never understand the magnitude of your pain and suffering with what you have endured Vrae with having gone thru stage one and stage two. I did learn one thing in the rehab hospitals in pain therapy. The other peoples pain is much worse than yours. They would say the same about mine but I couldn't see it. It would be so wonderful to me to have the words to help comfort you and ease your burden and help you in your battle with this ferocious disease. I am just limited and all I can give is my heart and let you know you have all the support that is in me Vrae for you and your family. Tell your daughter we are very proud of her. Soft gentle hugs Vrae and love to you and all others in here afflicted with rsd/crps. You're a warrior Vrae. Vrae, spell krow backwards and you know what I lost the most. I have krow on both our vehicle plates. I had to start looking for the things that I had and not the things I had lost. |
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| "Thanks for this!" says: | Vrae (04-02-2014) |
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04-02-2014, 12:16 PM
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#19 | ||
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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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| "Thanks for this!" says: | Vrae (04-02-2014) |
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04-02-2014, 01:42 PM
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#20 | ||
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Junior Member
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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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| "Thanks for this!" says: | Vrae (04-02-2014) |
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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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