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 04-27-2014, 10:56 AM #1
danos danos is offline
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Default Wife got cprs I'm feeling helpless

My wife has been diagnosed with cprs amongst other things hyperhydrosis, idiopathic hypersomnia,ocpd,and radial neuropathy and I haven't been there for her in the past 2 years completely like I should, I myself has recovered from tb in 2011 but I never really recovered in my head and my wife was with me every step of the way, I'm not using that as an excuse and I can accept that my wife with all those things wrong with her is mentally stronger than me. Now my marriage is on the rocks and all I want to do is help her but I don't know how as I want to take the pain from her but I can't, she's on gabapentin for the pain and in March she missed her operation for a nerve block as work wouldn't allow me the time off as she can't go home by herself so the they rearranged it for April and she diddnt go because she "didn't want to get behind at work" I love her more than anything and I just want to make her happy.

Thanks for reading

Daniel
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Old 04-27-2014, 12:26 PM #2
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Sorry guys it's crps I'm doing this from my phone and auto spell is on.


Thanks !!!
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Old 04-27-2014, 04:23 PM #3
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Default Welcome Daniel

I'm glad you are looking for a way to support your wife also is a good idea for her to open an account and also join the forums,you will get so many information about this condition and she can get her emotions out by sharing her pain and concerns with us as well,or you can both write together,read together at the same time so you both learn and express your emotions one to the other,I do that with my husband,I always reading what is being posting so he can learn a little more.
It is a hard and difficult condition to understand and to treat,I recently suggested another new member to read past postings and members profiles so you can learn and see how we all had evolve,how medical treatments had worked in the past and how we are doing now,some works,some doesn't ,don't get discourage if that happens,just try another thing,something will work soon.also emotionally is a roller coaster ,you have to be so patient and try to understand her if she has some sudden changes,happens to all of us,like I said ,is hard,I hope you both soon find the right medical treatment also I'm glad to heard you are doing better yourself and ready to support her,no one is stronger than the other,is just that we save our energies for the next step,now is your turn,good luck,I wish you the best and blessings to both of you,from Jesika .
Ps.we are a nice community here,hope we can provide you both with the comfort you need
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Last edited by eevo61; 04-27-2014 at 04:26 PM. Reason: Corrected :comfort
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Old 04-28-2014, 01:58 PM #4
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Hi Dano,
I think it's great that you're looking for a way to help your wife.
You 2 have had some rough times but try to just move forward from here.
Don't beat yourself up over it. I know my husband has been great
support for me in getting medical treatments, but I've learned that
emotionally he just has to "turn it off" sometimes. At 1st I was a little hurt
by that but now I've learned he has to find his own ways to cope.

I know what works for one person does not necessarilly help another
with this disease. But for me the nerve blocks are a lifesaver! I'm not
in remission but many symptoms you describe are relieved and the
pain is greatly reduced. It's a "lost" day to get them but they're now
lasting several weeks. I would make it a big priority to get her the
proceedure!
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RSD/CRPS and contracture of left hand and arm after surgery for broken wrist.
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Old 04-28-2014, 08:07 PM #5
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My husband will tell me sometimes that he wants to do things for me, but feels completely helpless because what can he do? While emotionally he has been there for me, he wants to do things more concrete for me. So I give him things to do, and maybe that would help you. (besides working on the being there emotionally thing, which really counts for a lot.) I let him do things I could do myself like heat my microwavable heating pads for me, tuck me in for naps when he's home, he helps me make dinner even when I can do it myself. Just things that make him feel like he's helping. And honestly, even if I could get my heating pad myself, it really does help not to make the trip. And it's nice to be tucked in or to make dinner together and have him to do the "heavy lifting" in the kitchen. So even if you can't make any grand gestures, do all the little things because they truly matter.

And I just got diagnosed myself so I haven't had a nerve block yet but I've heard good things. I would push her to do what she needs to for her health. It's more important than work.
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Old 04-28-2014, 09:03 PM #6
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The most common issue for posters here because their spouses have CRPS and they want to be supportive is dealing with the feelings of powelessness because they can't "fix" the pain for their suffering spouses. I really like Adalaide's suggestion to do some of the little things, even if your wife could them herself, just to show her that you are there for her.

I give you kudos for reading up on CRPS and finding this forum. I have one of those spouses who doesn't understand CRPS and who doesn't care to learn. If you you feel that you weren't there for her a much as you should have been, I hope that you are able to show her now that you are fully committed to support her in her struggles with chronic pain.
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Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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Old 04-29-2014, 02:51 AM #7
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Thank you very much guys for the very warm welcome, it's very complicated not only does she has crps, she also has hyperhydrosis, ocpd ,Idiopathic hypersomnia, and Radial neuropathy most if not all are not very common conditions, I couldn't even imagine what's she's going through, at the moment she's very withdrawn, not talking to me much and she says doesn't want to be with me but I love her more than anything and I'm going to learn as much as possible so I can make her life easier.
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Old 04-29-2014, 06:20 AM #8
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Hi danos

As the others have said, well done for caring enough to join here and try to help your wife. Life can be very complicated, and I'm glad that no matter what else, you are committed to both her and her struggles.

Having long term health problems is always hard, and I think most partners, including my husband bless his little socks lol, would say that it's terrible to watch someone you love struggling but to be ale to do so little to help. You can't protect them from everything or they have no life, but if they are doing stuff their health means it is going to be difficult and throw up problems for them and you.

As a CRPS gal myself, I'd say that the biggest and best thing you can do for her is to learn as much as you can about CRPS (and the others). Don't lecture her with your new knowledge, or dazzle her with facts, or correct her (I'm sure you wouldn't), but then when she talks about it, you know what she is referring to and can understand. The worst thing about this at times is struggling but knowing that you can't even begin to explain it to someone because they will just look blank or unconvinced.... Make sure she knows you have researched it, but don't ever try to tell her what she is feeling!

Also, those little things already referred to. Ahh yes. Every morning, my husband brings me a cup of tea before I get up. He knows that I can't just leap out of bed, and that I use that cuppa to take my first tablet and generally prepare myself for the fun day ahead lol. The fact that he does this makes me smile every morning and soooooo helps my mood start off right. I just feel he's got my back, and understands. Worth gold. Also, if I'm feeling rough, he'll offer to make tea, instead of just asking what we're having. He tried not to huff if I suddenly have to sit down and he has to take over cooking duties. All these things I appreciate beyond measure, and I value him all the more for it. He's not perfect by a long chalk, but we're getting there, and overall have a good balance.

The other important thing is that he doesn't baby me. I work when I can, and he will always assume I am doing something unless I tell him I'm not. So if I am booked to work, he won't offer me an excuse to get out of it, because he knows that I want to do it as much as possible. It's a tricky balance, trying to do as much as you can, but knowing that sometimes the sensible thing to do is to back out of a commitment, social or work. I hate letting people down, but I've learnt to do it as little as possible by making reasonable commitments, and he helps me to keep my commitments, rather than asking me if I'm too poorly to do something. He knows I'll tell him if I can't do it.

It all hinges on communication, which is hard if your wife is withdrawn. She will need to talk, as sikence and pain domt help each other, and she probably has a hundred doubts and fears, but maybe doesn't feel she can open up yet. If she feels secure and able to, she might start opening up more with time. All you can do is be there for her, and be consistent, so that she knows she can trust you to be there tomorrow and tomorrow

Relationships are hard enough without something like CRPS. But you can get there and still have a good partnership. It takes time to learn how to balance things all over again. Maybe counselling might be a thought? We had some last year, and it was the best thing we've done. Really helped us both understand where the other is coming from.

Anyways. The folk here know about my wordiness lol, but you're new and I apologise for the ramble!!!

Good luck and keep talking. It'll get better.

Bram.
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CRPS started in left knee after op in Aug. 2011
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Patella femoral arthritis both knees.

Keep smiling!
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Last edited by Brambledog; 04-29-2014 at 06:20 AM. Reason: Muppetry
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Old 04-29-2014, 02:33 PM #9
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I agree with everything Bram said about communication. I will say though that for me, while I do make effort to communicate my needs, limitations and abilities to my husband what I don't talk about to him is my pain. There are times that he will catch me wincing, hear a moan, see me catch a step from a cramp or something similar. He'll simply ask "pain?" and I"ll answer "yes" and we move on. He knows I don't want to talk about it because feeling pain all the time is enough, I don't also want to talk about it. I prefer activities that attempt to take my mind off of it. So, while we communicate about everything about and around CRPS that we need to, we don't talk about the pain unless it is something that somehow is relevant and needs to be discussed. Not everyone feels the same way, but not everyone should be pushed to discuss it either.
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Old 04-29-2014, 03:48 PM #10
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I agree Adalaide, and I do a similar pain thing. The last thing I want to do is talk about the pain....most days...and it's enough for him just to notice that I'm hurting, I don't want to discuss it But sometimes, especially in the early days of dealing with it, I did want to talk about how I was feeling, just because it was all so crummy and scary. I just think that when you are feeling really low and bad about things, talking is much healthier than trying to cope alone. I know that staying quiet and isolating myself just makes me feel even more alone and hopeless. Mind you sometimes I need to be alone to deal with it and move past....but that's rarer for me.

Like you said, we are all very different in how we deal with it all. If only none of us had to learn to cope with it!...ahhhh we wish

Bram.
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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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