[RSD_PITA]

Sorry if this is too long for some to read.

My wife has RSD. She was diagnosed about 1.5 years ago. It started in her hand and spread up her arm. Now she is feeling it in her leg. She had a trial epideral catheter. It worked well, but LNI would not pay for it.

She is on a lot of medication. She wants to catheter so she can get off meds. They make her very forgetful, and hard to concentrate. Now LNI is about to close the claim and wants her to go back to work.

Something clicked last weekend, and she changed. It went from hard to concentrate and remember, to not remembering 10 seconds ago. She thinks I've changed and I'm not talking to her. She thinks she did something to make me angry and not want to talk to her. But its that she just can't remember me talking to her.

She won't let me sleep. She keeps calling my name (like every 10 seconds) just to tell me she loves me, and asking me to talk to her, and I deal with it as long as I can but eventually I need sleep. I tell her I need to sleep so I can go to work. I go to my parents to sleep. She is convinced she wont wake me up, but she just doesn't remember. But she doesn't understand that we've tried it for a few days, and the only way I get sleep is if she passes out herself.

We saw a new pain doctor (out of town), and he seemed knowlegeable about CRPS, and even mentioned Ketamine. He said he would talk to her pain doc in town, and give him some ideas, and we can go from there. He thinks she might need in-patient help, cause she can't keep food down, and does not eat much, and probably needs to go down on meds. I know in-patient is not what she wants. If she gets help other than catheter she will not be happy with me. She is...very stuborn...but hey it is her life and her health.

Problem is I don't have a clue how I can help her. I need sleep so I can work, and try to pay bills for us. I want to get her the help she needs, but she will only take certain help.

I'm starting to snap at her, and be grouchy. I feel I need therapy now or something. I'm totally lost and don't know what to do!!!

[PamelaJune]

Gosh, how terribly hard, I'm so very sorry you are in such a difficult situation. Many of the drugs we take do cause memory issues, but what you describe sounds extreme and must be very frightening for both you and your wife. Does your wife know when you are at your parents house to sleep, and has she started to do other strange things and not recall such as getting up to go out in the middle of the night, cooking a meal and forgetting to turn the the oven on (or off).
I'm not sure what you mean by catheter? To me a catheter is what is put in for aiding with urination so the patient doesn't need to get up to toilet. I'm sorry for my ignorance.
Do you have a pain and or medication diary? It can help you to record what time medications are taken and what type of behaviours occur as a result of the meds and what changes in her behaviour as they wear off etc. Is it possible if she is forgetting things she is doubling up on her medication intake? You could try post it notes to record things you discuss and get your wife to write it also so you can show her you have had that discussion and that you are talking and you are not angry. That said, it would not be easy, as she could well take offence initially until she can see for herself it's happening and then, she may well become upset as she realises that something is very wrong.
I don't know what LNI is either, I come from a different country so again excuse my ignorance. If it's about to run out, can you make the most of it before it does and get her into a hospital where she can be monitored round the clock for 48 hours or so?
I really do understand you are in a difficult place, just know, you are not alone, our partners face situations as well from time to time and it's only by having open and frank conversations between us and with our medical practitioners that we can sometimes all move forward together at the same pace.

[Brambledog]

Wow that's hard, I'm so sorry you're dealing with this on top of all the other worries that come when your loved one has CRPS...

I can understand your frustration and anger. It must be hard enough seeing this happening, but when she can't see it herself and is reading bad things into her view of what's happening....well, it must feel like you can't do right for doing wrong.

I would suggest going to stay with her parents or someone she trusts for a few days, so that they can see it for themselves. If other people are seeing it too and corroborating what you say then she hopefully might not feel that it's some conspiracy, and you can then ask the doctor about it and maybe set up some kind of session with a counsellor. I'd do the counsellor thing anyway, it is very helpful to have that third person involved and making sure that the discussions about what's going on are productive and positive, rather than negative.

Or...ask a friend of hers, someone she trusts, to come and stay for a few days, for the same reason. They could maybe sleep in the same room as your wife while you get some sleep for work. Again, if other people than yourself are experiencing what's going on, you can sit her down and help her to gently realise that this is a new thing that needs to be addressed. It might be meds related, it might not, but until she can acknowledge that things have changed its going to be hard to get it treated. In the meantime, you could ask to see her doctor to tell them what's happening and ask for advice. They won't be able to tell you anything too concrete because of the whole patient confidentiality thing, but they need to know about this, and should be able to advise you and suggest a course of action.

Good luck, and let us know how you both get on with this. For yourself, try to make some time for naps away from home, even just for an hour or so, to help you get through the days. Also practice deep breathing exercises (breathe in slowly through your nose, right to your boots, and then exhale slowly through your mouth counting silently to five) to gain some calmness and reduce the frustration. You could maybe try getting your wife to join in as a joint exercise for you both. Us wives like to feel our husbands are involved in these little things

You're doing a good job there. Keep going and try to keep calm with her, even though it must be driving you crazy... It's got to be a very scary time for her, and I'm sure she will feel very guilty when she does realise what's going on. You will need to give her lots of reassurance that it's not her fault and that things will be ok. This is a scary enough disease anyway, without bringing stuff like this into the room...

Take care of you both.

Bram.

[Hana]

Originally Posted by Brambledog

Wow that's hard, I'm so sorry you're dealing with this on top of all the other worries that come when your loved one has CRPS...

I can understand your frustration and anger. It must be hard enough seeing this happening, but when she can't see it herself and is reading bad things into her view of what's happening....well, it must feel like you can't do right for doing wrong.

I would suggest going to stay with her parents or someone she trusts for a few days, so that they can see it for themselves. If other people are seeing it too and corroborating what you say then she hopefully might not feel that it's some conspiracy, and you can then ask the doctor about it and maybe set up some kind of session with a counsellor. I'd do the counsellor thing anyway, it is very helpful to have that third person involved and making sure that the discussions about what's going on are productive and positive, rather than negative.

Or...ask a friend of hers, someone she trusts, to come and stay for a few days, for the same reason. They could maybe sleep in the same room as your wife while you get some sleep for work. Again, if other people than yourself are experiencing what's going on, you can sit her down and help her to gently realise that this is a new thing that needs to be addressed. It might be meds related, it might not, but until she can acknowledge that things have changed its going to be hard to get it treated. In the meantime, you could ask to see her doctor to tell them what's happening and ask for advice. They won't be able to tell you anything too concrete because of the whole patient confidentiality thing, but they need to know about this, and should be able to advise you and suggest a course of action.

Good luck, and let us know how you both get on with this. For yourself, try to make some time for naps away from home, even just for an hour or so, to help you get through the days. Also practice deep breathing exercises (breathe in slowly through your nose, right to your boots, and then exhale slowly through your mouth counting silently to five) to gain some calmness and reduce the frustration. You could maybe try getting your wife to join in as a joint exercise for you both. Us wives like to feel our husbands are involved in these little things

You're doing a good job there. Keep going and try to keep calm with her, even though it must be driving you crazy... It's got to be a very scary time for her, and I'm sure she will feel very guilty when she does realise what's going on. You will need to give her lots of reassurance that it's not her fault and that things will be ok. This is a scary enough disease anyway, without bringing stuff like this into the room...

Take care of you both.

Bram.

I agree with Pam and Bram who speak so well.. So sorry!
I wonder also if something else is going on like severe depression or a brain injury? Maybe she can't see any of this and has gotten to a place of dispair..and meds may not be right... This needs to be sorted out soon so that both of you can regain your footing. Do you have outside support for you too? Find friends and family...keep getting as much support as possible. We are here with you!

Please use this wonderful energy;may we share healing and compassion with each other. Praying for the best of care for you both...keep us posted.

Hana

[alaska49]

Do you have a pulse ox to check her oxygen levels? Some meds do make you forget but hers sounds bad. I went through the same issue where I wasnt remembering anything I would say something and then repeat it to the person every 1 min. and I didnt remember I took my meds so would keep taking it so my mom had to take it away and give them when was able. When I went to the hospital they found my oxygen was so low I wasnt getting enough to my brain so didnt know what I was doing, I was even running out into the middle of the road and acting like I was 3. I had what was called hypoxia (not sure if its spelled right). I ended up being diagnosed with sarcoidosis where granulomas grow in the lungs. Checking the oxygen is just an idea, I was doing what she was for 5 months before they found my brain was being deprived of oxygen. Sorry for what both you and she are going through and hope you can find help. other issues that can make it happen that made me forget to was low thyroid or hypothyroidism, and very low potassium
Iam very sorry, I know it must be hard on you, you need to find a doctor to figure out whats is the absolute cause for it because your wife just doesnt understand what she is doing or know she is. I know I put my family through hell for the 5 months from running out into the highway, throwing my open pills at them, repeating myself over and over again. Even in the hospital I had to be watched by a nurse in my room cause i would keep getting up and trying to leave my room not knowing what i was doing, i even threw my meds at them and because i couldnt remember when I got my pain meds I was ringing me nurse bell every 5 min to get my meds and they kept trying to explain I got it and I would get mad and yell. I dont remember any of this but they tell me the stories and i feel so bad what i put my loved ones and the nurses through. In the begining my mom blamed it on my meds too but found out it had nothing to do with it and was something more serious, I was just lucky they got me oxygen before the loss to my brain was permanent that would be scary. Since she isnt remembering watch her taking her meds cause like me I was taking them every 10 min because I thought i hadnt so my mom had to control them. I wish you luck and hope you find an answer.

[NurseKris]

Normally I am just a lurker but I felt the need to chime in in this case.In a previous post it was mentioned she hit her head. I would get a CT of her head with contrast to rule out a slow bleed. Sometimes subdural hematomas do not show up on the scan immediately. Based on the confusion alone I would feel that a neuro work up would be appropriate. Just my opinion. I hope everything works out for both of you.

[~Sage~]

Thank you nurseKris, that was my thought. I had a stroke and had NO short term memory. I'd say, forget the sleeping with friends and get her right to an ER. Now. And good luck.

[RSD_PITA]

Sorry for not getting back sooner. Took her to ER. She's had multiple head scans and there were all normal. The doctor's said her meds doses were way to high and poisoning her and she was hallucinating along with no memory. They took her off most meds (she's been in hospital for a week now). They had her on meds to make her comfortable but now they are backing off so she can go home.

Now she is miserable, and not getting any sleep. Waiting for doctor to get here and hopefully help her with the pain. If they don't do something, don't know what to do, cause she doesn't want to live like this.

Things were ok, till they took her down to almost no ativan. That's what was making it tolerable.

[Brambledog]

I'm glad the scans were all normal, but so sorry her pain is not being controlled. You just have to hold your ground as far as the ativan goes - if you know that's the one that's really important, make sure they know it too. I can understand them wanting to reset her meds if she was taking way too much, but it's in the Patient Charter - every patient has the right to adequate pain relief. I hope they can help her, and you, quickly.

Try to stay calm and hopeful. At least where she is they are doing something and she is being monitored.

Good luck, you're doing an amazing job and she is lucky to have your love and support. Let us know how you both get on.

Bram.

Then insist she goes back on it, Also where are you, perhaps someone knows a local support group, sounds like you both need some help