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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)

Running out of fight

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Old 03-16-2019, 09:57 AM   #1
Kldemaio
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Confused Running out of fight

Hi, I am in almost that exact boat as everyones story I read and and struggling to see hope and happiness. My husband had his first surgery on his left elbow around 2006, then left wrist 2010, and then left wrist again 2013. The CRPS was diaganosed in 2014, it was probably there before the 2013 surgery since that one was exploratory to clean up what the doctors thought was causing the pain but who knows. We were married in 2011, and daughter was born in 2013. By the time she was 9 months the pain was excruciating and he could barely even hold her. At 11 months she was hospitalized for a respiratory issue. The following 2 years resulted in 4 more hospitalizations including and PICU stay and surgeries. We finally found out her enviromental allergies were the partial drive behind her respiratory issues. We moved within two months finding out our old house was the culprit behind her exposure to her allergies. Since the move she has stayed out of the hospital. If only helping my husband was as easy as moving. The pain now is his entire left arm and has spread to the right arm. He has tried nerve blocks, had a spinal cord stimulator implanted to help with the pain, and most recently started on medical marijuana. His pain is non stop- although both the spinal stimulator and medical marijuana has helped, he still has some very bad days. On his bad days any frustration or annoyance he takes out on me becoming verbally abusive, controlling, and demanding. I do everything inside and outside of the house as well as keep his personal needs and sexual needs met; and ask very little of him that may cause him pain. I haven't seen the man i fell in love with in so long, i dont even know if he is still in there under all the pain, anger, and depression. My friends say i should leave him as his behavior and actions towards me are becoming much worse. I feel torn. I know his pain is real, i know i dont love the man this disease is turning him into. But I also know none of this he asked for and the pain is out of his control. I also feel I am abandoning the wedding vows of in sickness and in health, except that his illness is now significantly effecting my health. I feel like a horrible person if I asked for a separation because I know there are this his disease makes it impossible for him to do for himself. My friends say i should think of myself and our child- when I do I think of January 2018 when I had fell and was in an aircast and on crutches. I was outside snowblowing the driveway with the aircast wrapped in a garbage and using on crutch to take the weight off me ankle. Should i be hung up on "in sickness and in health" when it only goes one way. I am so depressed and know I need to do something but I also dont have annyone to talk to that understands my internal battles. Any words of wisdom or sharing of your battle may be helpful. Thanks, Kim
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Old 03-16-2019, 09:17 PM   #2
Imahotep
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Quote:
Originally Posted by Kldemaio View Post
Hi, I am in almost that exact boat as everyones story I read and and struggling to see hope and happiness. My husband had his first surgery on his left elbow around 2006, then left wrist 2010, and then left wrist again 2013. The CRPS was diaganosed in 2014, it was probably there before the 2013 surgery since that one was exploratory to clean up what the doctors thought was causing the pain but who knows. We were married in 2011, and daughter was born in 2013. By the time she was 9 months the pain was excruciating and he could barely even hold her. At 11 months she was hospitalized for a respiratory issue. The following 2 years resulted in 4 more hospitalizations including and PICU stay and surgeries. We finally found out her enviromental allergies were the partial drive behind her respiratory issues. We moved within two months finding out our old house was the culprit behind her exposure to her allergies. Since the move she has stayed out of the hospital. If only helping my husband was as easy as moving. The pain now is his entire left arm and has spread to the right arm. He has tried nerve blocks, had a spinal cord stimulator implanted to help with the pain, and most recently started on medical marijuana. His pain is non stop- although both the spinal stimulator and medical marijuana has helped, he still has some very bad days. On his bad days any frustration or annoyance he takes out on me becoming verbally abusive, controlling, and demanding. I do everything inside and outside of the house as well as keep his personal needs and sexual needs met; and ask very little of him that may cause him pain. I haven't seen the man i fell in love with in so long, i dont even know if he is still in there under all the pain, anger, and depression. My friends say i should leave him as his behavior and actions towards me are becoming much worse. I feel torn. I know his pain is real, i know i dont love the man this disease is turning him into. But I also know none of this he asked for and the pain is out of his control. I also feel I am abandoning the wedding vows of in sickness and in health, except that his illness is now significantly effecting my health. I feel like a horrible person if I asked for a separation because I know there are this his disease makes it impossible for him to do for himself. My friends say i should think of myself and our child- when I do I think of January 2018 when I had fell and was in an aircast and on crutches. I was outside snowblowing the driveway with the aircast wrapped in a garbage and using on crutch to take the weight off me ankle. Should i be hung up on "in sickness and in health" when it only goes one way. I am so depressed and know I need to do something but I also dont have annyone to talk to that understands my internal battles. Any words of wisdom or sharing of your battle may be helpful. Thanks, Kim
I don't think I can really say anything to help but it was difficult for me especially in the early years. As time went on I became less grumpy and better able to manage the pain and fear.

The operations are really tough on RSD and it takes time to improve after one.

Best of luck to you both.
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Old 03-22-2019, 01:10 PM   #3
Peter_crps
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Default Dealing with Grumpy CRPS Patient

Hi Kim,

I'm sorry to hear about your challenges. My wife told me one day that "it's really hard on me when you're in pain." It took me a few years to understand this because it's hard not to be self-centered when the pain is at a 10+

Perhaps having someone to talk with, a therapist, or psychiatrist would be able to help you and the patient. I'm sending healing thoughts out to both of you!

Peter
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Old 03-27-2019, 08:41 AM   #4
CRPSinSC
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Hi Kim:
I also have CRPS, and went through a lot upon being diagnosed. I still go through a lot, but I don't take it out on my husband. During the early years with it, I did. After several blow ups and blow outs between him and me, we finally came to our place together and individually. So, I am not surprised your husband is struggling to accept this diagnosis and is reacting and reactive, BUT, in my opinion, you need to communicate with him, and you need to refuse to accept what is unacceptable. He has to change his way of coming to terms with his new life and situation, because it isn't going anywhere, and this isn't healthy for any of you. Therapists can possibly help the two of you talk this out, and help you separately to come to terms. I am sure you have lots of emotions going on, too, as a result of his diagnosis. For my husband and me, we were in therapy short term and then took it from there. We are very happy together now, but we really did go through some things as a result of this diagnosis....both of us. This is a traumatic diagnosis, and marriages, when severely traumatic things hit them, often struggle. Statistically, divorce rates are high for this and other types of issues, but they need not be.....Talk to each other.....work through your feelings, because I know we both had them.....him, too.....we both suffered loss.....and anger is the emotion above hurt....(the secondary emotion). Underneath, all your dreams feel shattered....and adjusting to the pain, for the patient, seems impossible....sometimes is....but we can't let these things that happen in our life define us....so, we have to get in touch with our emotions, accept them, and find a new way to be happy, joyous and free. My husband and I have a thing now....we avoid being negative...and we avoid negative people....the energy put into that is a choice, and it's toxic...and robs us of happiness. Find a new place together if you can....and start with defining for him what is unacceptable, in love...and see if he will go with you to a new state of being together.
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Old 03-27-2019, 09:30 AM   #5
Jo*mar
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Vows don't mean staying in abusive situation, plus your child is seeing and hearing things, and they learn about relationships this way...

He might need some counselling to deal with his physical losses and pain levels..

If he won't consider that, maybe a trial separation is needed... to give you both some thinking / reset time..
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Old 03-27-2019, 05:26 PM   #6
CRPSinSC
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I 100% agree with Jo*Mar.....vows don't mean staying in an abusive relationship....Period.....
and there is not a But here.....BUT,
We did not realize that we had so many "feelings" going on, and as we all know, they say you take them out on the people closest to you. Both my husband and I were upset....he was upset because he seriously did suffer a loss in that his plans for him and me were shattered now that we had to do things so differently than we had planned before the dx. I, of course, was in pain like never before, battling the anxiety and depression of knowing it wont ever go away, and I, too, had to accept that this forever changed me. Together, we were overwhelmed with our feelings, and not really able to talk about them. Then, he didn't want to mention to me how he felt, as he thought I was already dealing with enough.....after all, I was in the physical pain.....but he was in pain, too.....
What I was trying to say earlier is that before you lose hope in your marriage, talk to your husband and both of you realize that you are both feeling a lot and reacting a lot.....and after a few sessions with a therapist, and learning.....tweeking......how to talk to each other, and that you very much should, because this is BIG....what is happening to the life you thought would go so differently than it actually is.....you may find, as my husband and I did, that you can grieve this loss together, as a team, and grow closer....ultimately.
For us, the anger state went on too long, really, and it got uglier than it should have. We did end up parting for a few weeks, and in that time, we realized we wanted to be together, nomatter how that looked.....and that even if we were angry at the cards life dealt us, we actually loved and needed and wanted each other very much.....So, we opened up the lines of communication, changed out attitudes and outlook and started caring for each other, deeply, actually.....
At the end of this is our marriage, stronger and better than even before the dx. We are close...very close....and pay so much more attention to ourselves and each other.
Dont think this is the end....it's WAY too soon to fret over that......but don't let this abuse and hostility and anger continue to be the undercurrent in your home.....do something about it.....and you may find that when you do, it's all for the better.....further down the road, when all of it comes out and gets unpacked...looked at, and conscious decisions and choices are made.
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Old 04-09-2019, 01:00 PM   #7
whittymjw
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sorry to hear about you're trouble, I fight my RSD alone and I'm pretty sure it's better that way. It would be worse for the people around me and IMO for me because the expectation is hopeful from other people but to the person that can feel the discomfort that is just making it worse - hard to explain

I'm trying to say that it might well be the right thing to leave him, for everyone's sake. Also he's bang out of order for treating you badly, why would you want to make other people feel bad when you better than anyone else know what's that's like consistently

I think most people on this forum are thinking what I'm thinking and that's that it is only going to get so much worse for him and goodness knows how he will treat you then considering how he's been with you so far

He should bloody appreciate how understanding you are and how lucky he is to have such great people around him, you clearly would do anything for this man but I'm just not sure you should

if you ever need someone to talk to let me know. I wish you all the best
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Old 06-26-2019, 04:07 AM   #8
Spen913
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Default Omg I swear this is craziness I thought I was alone

Kim
I swear I hear ya. Please tell me how it is going. What did u decide to do? My husband was crushed 3 yrs ago in Aug. Long story but nothing broken but now he had crps. Iam living the same way. Please keep me posted. We have 4 kids my friends say the same things. Please keep in touch.
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