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 07-01-2010, 10:16 AM #1
stressedout stressedout is offline
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Default Things just keep getting worse

Sorry I haven't been here the past month.I don't post much but read all the time looking for help or answers.

In May my house burned down killing my 6 dogs and the kids lizards and fish. It was very traumatic, as I was picking up my kids from school and my son is on the volunteer fd and got the call as school was getting out. I raced home but it was totally engulfed. Nothing could be saved. It was horrible watching my daughter run down the street screaming and then collapse.We first stayed at a hotel, then a camp, now we are in a rental house buy it is not HOME. The ins co thinks a faulty appliance-coffee maker. It was off but plugged in. People have been very supportive, just when you think the world is full of hate. Then we had money stolen from us as moving guys were bringing in rental furniture; that's it kick me when I'm down. To make matters even worse, my husbands job has been sending them home and telling him not to come in because there is no work. i am scared he will lose his job and I am still out of one. We want to rebuild but I am so scared that we'll both be out of work and lose it. We barely get by as it is.

We are heartbroken over our pets...they were show dogs, agility dogs and they got me through this past painful yr dealing with the RSD. My friend just happened to have a pup that she sent to us to help us get through. Not sure what I would do without him.

Anyway, to my arm....It actually hasn't been too bad. t's still bigger than my other hand and shakes. Pain is still there but not as bad as it was. I have actually been using it more. However, at night it gets relly bad. I am not sure if it's getting better or not, better in summer? or just because I have pretty much been running on adrenalin? My life right now just seems so uncertain. I want my home, my dogs, my life without pain back, good jobs again. How much worse are things going to get? What have I done to deserve all this?
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Old 07-01-2010, 11:39 AM #2
kathy d kathy d is offline
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Dear Stressedout,
You poor baby. My heart is so filled with love for you and my eyes are filled with tears too. You have had such a horrible time and I feel so badly. You lost so much. Just the dogs alone would have put me in a white padded room. And all this with RSD. I agree you need a big break. All I can say (which seems stupid to me) is that it will get better. Be very thankful that none of you were in the house when it went on fire say during the night. Things could have been so much worse. A friend of my brother's (who also lives in NJ) had a house fire two summers ago and it was caused from a new dishwasher that caught on fire. That is so scary your coffee machine went on fire...and wasn't even on!!! That is even scarier because everyone has appliances that are not turned on in our homes. Wow, I will keep you in my prayers and maybe that will help you get some peace of mind.

I have had bad and I mean real bad years like you and you wonder why? Why does God allow it to happen to only certain people (and most likely not the bad people we see on the news each night)?? I have only come to the conclusion that God allows these things to happen so we will learn from our trials how to go through life. In reality it is the devil that does these horrible things to us. He wants us all to faulter and hate God and turn against Him. If you keep the faith in God and keep plugging away...only one day at a time and don't worry about the future you will be fine. Think of this as a learning lesson and stay focused and positive and then your kids will learn new coping ways too. It will teach them that no matter what happens you will always be together and love them and you will all get through the hard times. In my life I have learned to pray alot and laugh out loud at least once per day in order to keep me balanced. Otherwise, I fall apart. PLEASE take care of yourself and let me know how you are doing. You are an amazing person to be able to go through all of this AND with RSD. You do need a break.
Take care of you first and then you can take care of others.
Bless You,
kathy d
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Old 07-01-2010, 06:04 PM #3
Lisa in Ohio Lisa in Ohio is offline
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Dear Stressed, I just wanted to tell you how sorry I am about our fire and the loss of your beloved pets. I really think that your user name is an understatement at this point as it seems that you have so much to do right now. It is really easy for me to sit here and tell you that God doe not give you more than you can handle as it must seem like an avalanche of problems to you. Please stay strong, take care of yourself first, let your community help you, just like you would help somebody else in that position, and finally, give yourself time to grieve. You have lost a lot, and it is OK to grieve for the things and pets that you have lost. I will keep you close in my heart and in my prayers, and I have faith that you will be able to rebound from all of this. Lisa
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Old 07-01-2010, 07:43 PM #4
RUReady RUReady is offline
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Stressed , I am sorry for the loss of your pets , and other belongings....Just remember as mentioned earlier to be thankful no one was at home at the time of the fire . I retired (disability) after 28 yrs with a large fire dept. , and have seen a lot of horrific things . Accept what assistance is offered and give all of your family an extra kiss good night and be thankful they are with you ! Things of this magnitude seem to teach us all to appreciate the little things a little bit more . Take care !
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Old 07-02-2010, 09:05 AM #5
daniella daniella is offline
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I am so sorry with all you have faced and continue to. I wish I had the words to comfort you but you are in my thoughts and I do hope things look up. I can understand living in the unknown and up in the air is very hard. I hope you can put plans in some way to get more settled soon. I know it is not going to take away everything you are dealing with but the extra support of a therapist may benefit you. I know when one experiences such tramatic things having support and someone to feel safe talking to can help.I also know they have support groups for pet loss. I encouraged my mom to go but she did not but just another thought As for your pain for me night time is very hard as well. I know it is hard to know what helps the pain and what hurts sometimes. I hope things get better soon.
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Old 07-02-2010, 11:38 AM #6
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Heart Take #2!!

Quote:
Originally Posted by daniella View Post
I am so sorry with all you have faced and continue to. I wish I had the words to comfort you but you are in my thoughts and I do hope things look up. I can understand living in the unknown and up in the air is very hard. I hope you can put plans in some way to get more settled soon. I know it is not going to take away everything you are dealing with but the extra support of a therapist may benefit you. I know when one experiences such tramatic things having support and someone to feel safe talking to can help.I also know they have support groups for pet loss. I encouraged my mom to go but she did not but just another thought As for your pain for me night time is very hard as well. I know it is hard to know what helps the pain and what hurts sometimes. I hope things get better soon.
Dear Stressed....

Just last night I had the longest post intended for you and guess what..it vanished..but I will try to reconstruct my thoughts and send it on..I am so so so sorry for your loss of your beautiful pets..Our pets always mean the very most to us and we love them unconditionally..That is itself is enough to send us realing down the sad path..Along with loosing your home , jobs and RSD, which we all know what that is about!! Bless you my friend, as I want to say..When I was first ill with my RSD, I wanted to place blame somewhere...it needed to be that way as to get the burden of living with it off my shoulders, somehow that made sense at the time...it was so important to me to pin someone for it...Later, I realized that God nor anyone else out there would do such a bad thing to me/us..not intentionally anyway! But my point is we have been appointed the recipients of this cuz we are strong..it has to be ..and each night we lay our heads down always wondering if tomorrow will be better..We ALWAYS..rise to the next day, ready with the gloves up..Why?? For the next kiss or the I love you from our family and friends..or the glimpse that things will get better..When the whole time..we have the answers..it is just the willing eye that sees it.. its us..it is what we are made of and it is the support we have close and afar..We have been trained to take things in small doses and to not look for or expect more...So please stressedout, Try to hold it together and stay hopeful..as tomorrow is another day..god willing, be a fresh start for us to begin again and take those small strides.... life really is not fair but it is worth living..in the mean time, hold those you love close to you..find the positives in your life...and allow us here to comfort and share with you, both good and bad as we care emensley and won't see you fall short...

Much love! Kathy
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Old 07-02-2010, 05:31 PM #7
SandyRI SandyRI is offline
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I'm so, so sorry. Don't know what else to say....please keep your chin up and try to stay healthy.

Much love and peace, Sandy
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Old 07-02-2010, 05:38 PM #8
AintSoBad AintSoBad is offline
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I'm sorry too, like Sandy, I'm stunned, and can only offer you my prayers. I wish there more that I could do...

love and prayers,

Pete
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Old 07-03-2010, 06:28 AM #9
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Stressed,

I am so sorry to hear what you have been going through !

My dog (that we got after the RSD monster struck) has been such a God-send to me with this condition. Whether I'm having a good day or bad day, she just wants to be by my side. I can't imagine your grief over losing 6 beloved dogs and your children's other pets.

You have so much to grieve right now.....the pets, the loss of your home 9and all the belongings with a lifetime of memories) on top of dealing with the challenges of RSD and the threat of serious financial problems.

I pray that you can stay strong through all of this and that God will send some form of relief to help you and your family.

__________________

.


Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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Old 07-03-2010, 07:34 AM #10
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Dear Stressed -

I join the others in expressing their concerns for you.

One of the things that peple don't realize about folks with RSD is that after a while, the disease begins to effect our emotional regulation through a thinnning of the cortical cells of the "anterior insula" in the brain. The Brain in Chronic CRPS Pain: Abnormal Gray-White Matter Interactions in Emotional and Autonomic Regions, Geha PY, Baliki MN, Harden RN, Bauer WR, Parrish TB, Apkarian AV, Neuron 2008;60:570-581, FREE FULL TEXT @ http://www.rsds.org/2/library/articl...aliki_etal.pdf As a reult, it much easier for us now to become emotionally overwhelmed.

Now, add to that, we add the fact that roughly 2/3rds of us will lose some organizational abilities or "executive funtioning," a matter of particular consequence in dealing with mass disruption in our life. Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J, Wambach D, Brahin E, Lee Peterlin B, Alexander G, Kalanuria A, J Int Neuropsychol Soc. 2010 May;16(3):566-73, Epub 2010 Mar 19, FREE FULL TEXT @ http://www.rsds.org/2/library/articl...ychol_2010.pdf
Department of Neurology, Drexel University, College of Medicine, Philadelphia, PA 19102, USA. dlibon@Drexelmed.edu

Abstract
We sought to elucidate the existence of neuropsychological subtypes in Complex Regional Pain Syndrome (CRPS). One hundred thirty seven patients with CRPS were administered tests that assess executive control, naming/lexical retrieval, and declarative memory. A 2-step cluster analysis that does not require any a priori specification regarding the number of clusters, classified patients into three groups. Group 1 obtained scores that were in the average range on all tests (n = 48; normal CRSP group). Group 2 (n = 58; dysexecutive CRSP group) presented with mild impairment or statistically low average test performance on working memory/verbal fluency tests. Group 3 (n = 31; global CRSP group) produced scores in the statistically low average/borderline range on all tests with particularly reduced scores on naming/declarative memory tests. Between-group analyses found that the CRPS group 1 obtained higher scores than CRPS groups 2 and 3 on all tests. However, groups 2 and 3 were equally impaired on executive tests. CRPS group 3 was impaired on tests of naming/memory tests compared to the other groups. Significant neuropsychological deficits are present in 65% of patients, with many patients presenting with elements of a dysexecutive syndrome and some patients presenting with global cognitive impairment.

PMID: 20298641 [PubMed - in process]
http://www.ncbi.nlm.nih.gov/pubmed/20298641

In other words, what would be a terribly upsetting experience for anyone is likely to be that much more challenging for someone with RSD, and that's before we get to issues how stress triggers pain!

So, may I suggest that it is time time to take a breath and give yourself occasional unconditional "self love" - truly caring for yourself - because I truly believe it's only once that us underway that that we are in a position to fully give ourselves to those we love in their hour of need as well.

Thinking of you and yours,
Mike
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