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 12-21-2017, 05:24 PM #1
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I could shower after 3 weeks but I can't shower because of the RSD pain...only take baths. And I can't take a bath for 6 weeks.
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Old 12-21-2017, 07:01 PM #2
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Catra,

Appreciate your detailed reports of your recovery and progress. Great to hear that you are in less pain.

When you finally get to take that first bath, it will be a treat!

To your continued recovery,

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Old 12-21-2017, 09:48 PM #3
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Great that the back pain is subsiding! I can't believe you are getting up and down off the floor. I can't do that! And making food for your husband? (Forgive me here) Shouldn't he cook when he's home??? (sorry.).
Amazing, though, how well your leg pain is going!
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Old 12-22-2017, 02:13 PM #4
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Great that the back pain is subsiding! I can't believe you are getting up and down off the floor. I can't do that! And making food for your husband? (Forgive me here) Shouldn't he cook when he's home??? (sorry.).
Amazing, though, how well your leg pain is going!
Gah...don't get me started with my husband and how much he does or does not help. In some ways he's great...in other ways I seriously want to wring his neck. I'm sure most relationships have those moments. I am super frustrated by how little he's been helping the last 6 months or so and especially now when it's like I NEED him to do some of these things. But if I don't do them they just don't get done...and that's fine to a point when it comes to SOME things but others have to get done (like the toys NEED to get cleaned up in the living room so I don't kill myself trying to walk through the room...but the other day he slid them over so that's just as good as picking them up, right??). He's a wonderful man...but I think he's just...tired. He's hit a wall I think after 2 years since my accident that made it impossible to use my left arm without severe pain (on top of everything else). The man naps SO MUCH...but he legit looks exhausted and I feel bad that he has to do so much and is so tired all the time. But...doesn't change the fact that right now I NEED his help and I NEED him to recognize what I need after I've told him once because to keep having to tell him the same thing over and over that I can't do something really just is getting to me. He's not an idiot...has an almost photographic memory, so when he claims he forgot something or can't remember it REALLY gets to me...especially when it's important he remember so I don't hurt myself. He's the first one to give others a hard time when they forget themselves and hug me, bump into me, make me sit in a spot where I will get bumped, etc...but lately he seems to be forgetting more than anyone. Ah well...hopefully better (less frustrating) times are ahead.
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Old 12-22-2017, 02:16 PM #5
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Just a quick update today. I had my 2 week follow up today (because actual 2 weeks is Christmas Day). Everything is healing up well. They cleaned the dressings and put new ones on. My next appointment is January 10th. Basically it's just more of the same restrictions. They said I could try to drive if I want to, but to just be careful not to twist too much (which...backing up I don't know how you don't twist too much unless you have a rear camera? So I think any driving will be extremely limited and if it hurts at all I will just wait.
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Old 12-22-2017, 03:43 PM #6
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Gah...don't get me started with my husband and how much he does or does not help. In some ways he's great...in other ways I seriously want to wring his neck. I'm sure most relationships have those moments. I am super frustrated by how little he's been helping the last 6 months or so and especially now when it's like I NEED him to do some of these things. But if I don't do them they just don't get done...and that's fine to a point when it comes to SOME things but others have to get done (like the toys NEED to get cleaned up in the living room so I don't kill myself trying to walk through the room...but the other day he slid them over so that's just as good as picking them up, right??). He's a wonderful man...but I think he's just...tired. He's hit a wall I think after 2 years since my accident that made it impossible to use my left arm without severe pain (on top of everything else). The man naps SO MUCH...but he legit looks exhausted and I feel bad that he has to do so much and is so tired all the time. But...doesn't change the fact that right now I NEED his help and I NEED him to recognize what I need after I've told him once because to keep having to tell him the same thing over and over that I can't do something really just is getting to me. He's not an idiot...has an almost photographic memory, so when he claims he forgot something or can't remember it REALLY gets to me...especially when it's important he remember so I don't hurt myself. He's the first one to give others a hard time when they forget themselves and hug me, bump into me, make me sit in a spot where I will get bumped, etc...but lately he seems to be forgetting more than anyone. Ah well...hopefully better (less frustrating) times are ahead.
That's got to be super frustrating. I'm so sorry. I'm sure he is having a hard time. As a spousal caregiver myself it is a difficult place to be. If he is the type who would use online support in a forum, I found Well Spouse Association to be a lifesaver. There is a small fee ($30) to join, but it is worth every cent. IF it is a hardship he can contact them it can be waived. Perhaps getting some support for how he feels will help him manage better.

Anyway, maybe if you try to have an honest talk where you acknowledge the additional pressure he is under, and clarify the most important needs, and then the things that you think you can be ok if he lets them slide sometimes, and then the things you can handle, he will feel more like a "team" ? I don't know your situation and how you have handled things, but I know what it is like to be married to someone with a disability.
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Old 12-24-2017, 07:51 AM #7
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That's got to be super frustrating. I'm so sorry. I'm sure he is having a hard time. As a spousal caregiver myself it is a difficult place to be. If he is the type who would use online support in a forum, I found Well Spouse Association to be a lifesaver. There is a small fee ($30) to join, but it is worth every cent. IF it is a hardship he can contact them it can be waived. Perhaps getting some support for how he feels will help him manage better.

Anyway, maybe if you try to have an honest talk where you acknowledge the additional pressure he is under, and clarify the most important needs, and then the things that you think you can be ok if he lets them slide sometimes, and then the things you can handle, he will feel more like a "team" ? I don't know your situation and how you have handled things, but I know what it is like to be married to someone with a disability.
Thanks. I don't think there's a chance my husband would be interested in something like that. We keep having talks about what I need from him...and I really think he does try...but I know he's frustrated by all of it. Not at me...just with the situation.
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Old 12-27-2017, 02:41 PM #8
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A heartfelt thank you Catra. Your very concise description of your DRG stimulator trial experience has been very helpful to me. I am a very weeks behind what you have gone through and have followed your posts. They have comforted me in realizing that what I am going through is normal.

I had my permanent drg stimulator put in yesterday. I was rather surprised in that the trial was so easy. I thought "nothing to this". Even to the point of telling the fellow prior to the permanent implant that I probably wouldn't need paid meds- just Advil. Didn't need anything much for the trial so why would I need anything for the implant?

Boy was I wrong. Yesterday I looked at your posts and saw that what I was experiencing was pretty much what you had gone through. Much thanks for that. The permanent implant surgery was pretty uncomfortable.

As a side note, I think we go to the same group of drs. Based on your timeline, I think we have been missing each other by about a day. Maybe one of these times our visits will coincide and we can meet.
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Old 12-21-2017, 11:25 PM #9
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I could shower after 3 weeks but I can't shower because of the RSD pain...only take baths. And I can't take a bath for 6 weeks.
Is your hypersensitivity effected by your pain level? Mine is.

I think I maybe mentioned this before, but I have a much easier time showering since I switched out my showerhead to a Delta In2ition.

Glad to hear you're doing so well.
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Old 12-22-2017, 02:03 PM #10
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Is your hypersensitivity effected by your pain level? Mine is.

I think I maybe mentioned this before, but I have a much easier time showering since I switched out my showerhead to a Delta In2ition.

Glad to hear you're doing so well.
I would say it's definitely worse when my pain level is higher...like if I'm flaring I really can't handle ANYTHING touching me. I would actually try a shower if it was just my leg...but my upper body is still a baseline 8 and even a rain drop hits my skin and I feel like I've been shot...it's pretty severe. Even light fizzy jets in tubs send me reeling...so no showers for me at the moment. It's a real bummer...so ready to be done with sponge baths.
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