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 03-19-2011, 03:32 PM #1
krank krank is offline
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Default just cant do this anymore

I just cant do this anymore...Im a shell of myself....I feel like a wolf caught in a trap...Im a burden to everyone....theres nothing left to try...all its doing is taking taking and taking some more...whats the point....I have nothing left to contribute....nothing left to prove as I become more and more irrelevent to my so called friends, family and anyone else...the fight is over for me...I lost my brother and I just lost my mother....and my poor wife has a huge battle going on with her own health problems..She has stopped going to the doctor to take care of me as I watch her hands start to deform from RA...She wont listen and all Im doing is getting worse fast....pretty close to full body with flares coming closer and closer together....its now affecting my inner organs..maybe i shouldnt write this here but i know that all of you would maybe understand..I just dont know how some of you make it as far as you do...I just dont have it in me... im sorry
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Old 03-19-2011, 05:31 PM #2
birchlake birchlake is offline
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Krank,

There is still hope buddy. Us CRPS guys in MN have to stick together! This terrible six month winter that we've just gone through (and isn't giving up yet) certainly doesn't do much to help with our mood.

Find somebody that you can truly confide in. You need somebody that will listen. Not try to fix it, as you have obviously been trying to do that.

Trying to help some of the others on this forum can be therapy in and by itself.

One day at a time. Hang in there.
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Old 03-19-2011, 05:36 PM #3
AintSoBad AintSoBad is offline
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Krank,
The folks here saved my life. It's a disaster when we start thinking the way you are.
Dig deeper, (there is ALWAYS deeper), find your faith, my friend. Someone, ALWAYS has it worse, and is smiling!
I'm not saying this to be mean, but, it's true. We get tested. Those that overcome, are accepted into God's kingdom!
And, so it goes.

I used to think that I had a right, to end it all. Why not?
Then, all the folks here, made me realize, that they loved me, and all my friends love me, and how much of an impact it would be, negatively, if I did the most irresponsible act possible, an act of TOTAL SELFISHNESS!

Forget all that, Krank. You've not yet reached your pinnacle. I've had this bastard RSD, with TOS for 27+ years. Was awarded 1.25 mil.
2nd wife, and an attorney, stole all of that.
I'm in the worst position of my life,
Yet,
Yesterday, just Yesterday,
I met with my attorney, whom I've been calling nasty names for a year out of shear frustration. A Friend took me, and another help to advocate.
I was able to get my ENTIRE point across, and guess what?
The guy is completely on my side again, more than ever.
And,
I FEEL BETTER THAN I HAVE IN A DECADE, Mentally and physically.

Because I have a TBI, and what is akin to PTSD, it's something like PTraumatic Head INJURY Depression.
I thought I'd be in bed for the weekend, nope. I was up at dawn and have been moving ever since.

So, keep the faith!
You never EVER know when God is gonna smile on you!

I smile on you, and pray on you!
I PROMISE, It will get better, just when it seems, it cannot get worse!

Love and Peace on you!

Pete

asb
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Old 03-19-2011, 05:52 PM #4
cndangel cndangel is offline
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I know I am fairly new to the forum and to RSD (just recently diagnosed) and fortunately my pain is just in my neck/shoulder/arm area and has not spread yet. So I am not going to pretend that I understand what it's like to have full body RSD... as I can't. At the same time though I could just not read your post and not respond.

I am not going to try to offer you any suggestions on what treatments to try, nor am I going to pretend things will be better tomorrow for you. What I can offer you though is my ear if you need to scream, yell, vent or cry. Feel free to message me anytime if you need to just talk... even if it doesn't make sense...just let it out.

A few days ago I had the worst pain yet due to my RSD. Never in my life have I felt anything like that. I thought it would never end. I was terrified and at the moment didn't think I could keep doing this if it is just going to get worse. So that night when my thoughts were swirling in my brain and the thought of ending it became comforting to me I broke down and called a local suicide hotline. I spoke to a very sweet lady who just listened. Didn't offer me advice on how to stop the hurt...as she has no clue how...but just listened to every word I spoke even through the tears when probably I was making no sense what so ever. After I calmed down we were able to have a 2 sided converstation.... we talked about how I felt like a burden to my family and friends and how frustrated and upset I was as I could no longer care for my 2 year old like I use too. That even the simple task of reading a story sent me to tears. She reminded me of something... That all the things my family and friends do, they do because they want to because they love me. I am not their burden but I am their love one in pain. They are not helping because they have too but because they want too. They have the ability to say No at anytime. That I need to let this guilt of burden go. She also reminded me if it was someone I loved dearly that I would do the same thing for them if the roles were reversed. For some reason when I went to sweep my kitchen floor as i was disgusted how dirty my house is getting yesterday...and when the pain hit me and stopped me and I threw the broom across the room and dropped to my knee's in pain and frustration...I was reminded of that conversation I had the with that sweet lady...and I dried my tears...called my oldest daughter (she is 18) upstairs and asked her "can you sweep for me?" she said "mom, I would love too.."
The lady was right....she did it because she wanted to help me, not because she felt she had too. Now maybe your needs are more then a floor being swept and trust me there are more then that for me as well...but just remember your family (wife) is doing all she can for you because she wants to and loves you. She wants you right there with her in your family home..she wants you to stay in her life and share her life with you. That is the good times and the worst times.

I really wish I could do more then just type words to you.... just please keep in mind that there is a women in Canada thinking and praying for you (hope the praying does not offend you) tonight and will continue too as long as you need to me.

Take care,
Karen

Last edited by cndangel; 03-19-2011 at 06:08 PM.
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Old 03-19-2011, 07:36 PM #5
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Krank and Karen,
I've also been there - Ain't So Bad Pete was one of the people here on this forum that helped me. Don't ever give up on trying to find the right combo of meds and treatments that will work for you.

Karen - my RSD also started in my shoulder, but it spread up into my neck and head. DON'T use your arms for anything too strenuous, like cleaning the floor. That is what causes the migraines, or at least it did for me. I would wake up at 3 in the morning vomiting after I exerting myself too much the day before. it was truly awful... try to get into the best Pain Mgmt or Neurology Clinic in your area as soon as you can. A series of nerves blocks may help you get into remission. for me, low dose ketamine infusions got me back on my feet after a year's sick leave from my job. Today is the 11 month anniversary of my first infusion.

Krank, the burden to your wife will be worse if she were to be alone. I'm sorry for what you are going through. have you asked your doctor about lidocaine or ketamine? Spring and summer are coming...!

please keep in touch -here are people here that understand and care.

XOXO. sandy
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Old 03-19-2011, 11:11 PM #6
Lisa in Ohio Lisa in Ohio is offline
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Krank, Please see a psychologist ASAP. you need someone to talk to about this with who is impartial and non-judgemental. Therapy has helped me so much, just to know that you have that crutch to take on your problems for a while. You and your wife need to take care of yourselves. Krank, you are not alone in what you are feeling or thinking, and it is OK to be down but not to give up. You are a valuable person and are here for a reason. Lisa
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Old 03-20-2011, 07:08 AM #7
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So sorry you are feeling this way, Krank.

I can totally relate. I have had RSD since I was 12 years old (now 16) and it is almost full body. I get depressed really easily and it has been a LOT worse then normal lately. Mums now had to lock my pain meds away and only give me what I need as I have been that depressed that I have wanted to end my life several times in the last few weeks / months. I'm now seeing a Psychologist for that and have 2 hospital appointments this week. I've been told that I may need anti-depressants ... not want I want but I seriously need to get out of this depression and fast!

Like you, I think my main problem is that I think of my past and how good it used to be and now look at my new life and remember how much I miss the old days. Nearly all of my friends left me when they found out I had RSD and couldn't do most things they could. That hurt me more than everything and I have spent the last 3 years sat in the house mostly. I have a boyfriend and he's been a great support. Been with me over a year and goes to hospital appointments with me so I think he understands some things. That helps a lot and I feel like I can tell him anything. Just last night I was crying because I missed my old life, going out socialising etc. He comforted me and told me that he would stick by me no matter what. I always get worried and think that he'll get sick of me and leave so it's nice to hear that he wont.

Please don't do anything stupid! Trust me I know how easier said than done it is! I've been undergoing Psychological support and thats helped me realise that I shouldn't do anything stupid as it would put my family (especially mum) through pure h*ll. I don't think I could cope with putting her through something so horrific. Don't get me wrong, I still am depressed but it's helped channel my thoughts a bit.

As the others have said, there IS hope. I know many times it doesn't feel like it but there is. New medicines etc that may help.

I think anyone with a chronic pain condition / illness will go through this depression at some stage. It's normal to mourn your past life etc. Please speak to your doctor and see if theres anything he can suggest.

Take care and know we are always here if you want to talk.

Alison
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Old 03-20-2011, 09:21 AM #8
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Krank,
I'm soooooo sorry to hear that you have been having a difficult time with this horrid disease. Also, don't hold back with what you post here as we are a support group for eachother during the good times and the bad. I can't speak for the others in the group but I truly feel love for each and every member and their family in this group and that includes you. I'm sorry that your CRPS is progressing. I know that I to have felt like I can't possibly handle one more day of unrelentless pain. With that being said, each time I get to the point of ending it all, it is usually after the disease has progressed and my med regieme is nolonger effective. Have you tried a change in meeds. Have you considered going back to rush? I know the whole cathadar thing in the spine was worrisome, but at this point maybe the risk is worth it? It might slow the progression and give you the relief that is needed.
I to am nolonger the person I used to be, but everyone (even a person without CRPS ) changes in their life.
Having a spouse and CRPS is very difficult to manage and I often feel guilty that I'm not even close to the person I was when we got married. However, our spouses would much rather have us here on earth with them
Versed us just checking out. I know how much you and your wife love eachother and if nothing else hold onto that. Please feel free to im me anytime and don't feel the need to censor your feelings. You are not alone in this battle and I have been praying for you and your wife.
Sarah
Xoxoxo
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Old 03-20-2011, 10:04 AM #9
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Hi there Krank! Guess what - you are not alone. You are not alone in your frustrations, your pain, your feelings of despair. I've been having a very, very rough week. On Tuesday, I underwent another epidural block which didn't help at all. I still can use stim minimal. I hate this crap - the sensations in my chest are pretty bad this week. It is burning and icy cold. My granddaughter stopped in last night - I went to hold her while I was standing up and I couldn't do it. I almost dropped her. I am only 41 yrs old and my life has been stolen from me. I've thought about "checking out", but I can't. I'm too afraid that with my luck it wouldn't work. That I would be even worse off then I am now. This monster went from my right knee and foot region to practically all over after I had my second implant surgery in Dec of 2010. It hurts to type (I used to be an office manager, and typing was my life!), I can't feel with my finger tips. There are days I hate myself, days that I hate happy people, days that I even hate my own family.

But, you know what - I pull up the "ole boot straps" and try to find something positive to focus on. Be it my kids, planning my son's graduation party (or hoping to be able to sit through the graduation ceremony), watching my 16 yr old daughter grow up - helping to guide her through the broken hearts and puppy loves.

I guess what I realized and understand now is that I am not just sitting on the sidelines of life, watching everyone else play, smile, laugh or cry. I am on the sidelines to cheer, to guide, to help and to love.

So, buck up little camper-we are all here for you!!
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Old 03-20-2011, 12:21 PM #10
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Quote:
Originally Posted by Patti_Christmas View Post
Hi there Krank! Guess what - you are not alone. You are not alone in your frustrations, your pain, your feelings of despair. I've been having a very, very rough week. On Tuesday, I underwent another epidural block which didn't help at all. I still can use stim minimal. I hate this crap - the sensations in my chest are pretty bad this week. It is burning and icy cold. My granddaughter stopped in last night - I went to hold her while I was standing up and I couldn't do it. I almost dropped her. I am only 41 yrs old and my life has been stolen from me. I've thought about "checking out", but I can't. I'm too afraid that with my luck it wouldn't work. That I would be even worse off then I am now. This monster went from my right knee and foot region to practically all over after I had my second implant surgery in Dec of 2010. It hurts to type (I used to be an office manager, and typing was my life!), I can't feel with my finger tips. There are days I hate myself, days that I hate happy people, days that I even hate my own famil.

But, you know what - I pull up the "ole boot straps" and try to find something positive to focus on. Be it my kids, planning my son's graduation party (or hoping to be able to sit through the graduation ceremony), watching my 16 yr old daughter grow up - helping to guide her through the broken hearts and puppy loves.

I guess what I realized and understand now is that I am not just sitting on the sidelines of life, watching everyone else play, smile, laugh or cry. I am on the sidelines to cheer, to guide, to help and to love.

So, buck up little camper-we are all here for you!!
Dear Krank many others,

I really must apologize for my distance from this supportive family we have here... Along with my RSD, I like Krank have lost my Mom this past November and just yesterday I carried my heavy heart thru our home of 51yrs. ...as we had to have an estate sale, selling all of my parents personal house items.. I wept all day!!!! I too have really been riding the waves of the emotions that come along with these sad times..But my reason for writing is truly not for my
distance but to say I have a large hole in my heart but to give you hope and faith, Krank...To say that you can do this..you can make it and live your life as God has planned and chose you for... Krank..you got us...I know, as well everyone here what you feel.... But like many here are saying...RSD is a bear to reckon with but each day presents a new front, a new chance to renew our strength and reaffirm that we are strong..Steiner than yesterday and tomorrow will be a gift...You'll see.. Take the time to appreciate those in your life and the love you share.. You'll see your pain and hopelessness will take a backseat to your blessings...You must see them thru just as I have to and everyone here who care about you!!!!

Bless you all...

Hugs, Kathy
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