Selfish spouse?
 

I want to get another perspective from some of you that suffer from RSD. I’ll break it down between her history and the actual question since I know a lot of you can not read that much at a time:

History:
My wife and I have been together for 5 years and she had her car accident that caused it a year into our relationship, so my wife has had RSD for the last 4 years. The last 2 years have been really bad and she keeps getting worse. She is on Methadone, Gabapentin and Percocet for her pain and the sympathetic nerve blocks never last more than an hour after the injection. We got married 6 months ago so now she is on my insurance (BCBS waived her pre-existing condition) and we are now looking into other options to relieve her pain.

Last month her pain specialist that she has had for the last year and a half pretty much gave her a weeks worth of her meds and said “sorry, your condition is too advanced for us, we really only do injections, go find another pain doc” they handed us an addictionologists’ card and sent us on our way, said he might be able to treat her pain with higher doses of drugs. We could not get in to see another doctor before her medication ran out. Her pain had started to escalate to the point that she would pass out from it so we went to Urgent Care, they said go to the ER, ER said to go to the pain doctor. I dropped her off at home and drove to her old pain specialists’ office and refused to leave until they gave me something for my wife, 4 hours later I went home with a script for 3 days worth of meds. It wasn’t much, but at least it bought her some time to get through the weekend.

So the next morning I wake up to find a suicide note sitting in front of the coffee pot. I read about the first 4 sentences before I figured out what it was, dropped it and rushed over to the couch where she sleeps. She was still breathing, although it was a bit labored. I was able to wake her up and assess all of her vitals/take inventory of what she took trying to determine if I HAD to take her to the ER or not (I was a firefighter/paramedic before we started dating). I was afraid that if I took her to the ER, they would admit her and then she would be stuck with no pain meds at all and on top of that, alone in some cold sterile room and that it would be worse for her. Having seen enough OD patients, I knew that I could detox her with the activated charcoal that I had at home.

Question:
She is very upfront with me about wanting to end her own life. Am I being selfish in not just letting her do it? (I removed everything from the house that she could use to do it). My wife and all of you are a thousand times stronger and braver than I am. If I had to go through what I see her go through on a daily basis, I wouldn’t have lasted 6 months. Since her horrifying experience with the last doctor, her PCP has been a god send and has taken over her pain medications while we look for a new pain specialist. She is too scared to try to OD on her pain meds again for fear that it won’t work and then she’ll be stuck with no meds. I don’t want her to do it because of obviously selfish reasons; I love her and I have hope that HBOT or the SCS will give her some quality of life once we get enough money put away for them. I just can’t imagine the pain that she goes through and part of me doesn’t think it’s fair to her to insist that she goes through it. She says that the only thing that keeps her going day to day is me and she knows that I will always be here for her, but I don’t know how long that can last.

I think that if your wife is actively suicidal she should see a psychiatrist immediately, for among other things medications that the PM - who unconscionably dumped her - might not have thought of and an evaluation of RUL ECT (electroconvulsive therapy) which ain't a bad treatment of depression and shows some promise for the treatment of CPRS. And whatever your views on psychotropic meds and/or ECT, I would urge your wife to be seen by a good psychiatrist ASAP. (As in yes, suicide is her decision, but it should be a truly informed choice, not overlooking any of the available options.)

As to ECT, please see the thread "RUL ECT as just maybe a cure for RSD (in perhaps 2 out of 3 patients)" at http://neurotalk.psychcentral.com/thread42529.html. Plus, with a suicide attempt, insurance would approve even in-patient treatment, which might alllow for the use of ketamine anesthesia in the procedure, which could all but eliminate any short term memory loss in the treatment and might serve as a catalyst that would improve the likelihood of successful relief from pain.

Now, in terms of seeing whether we can suggest good specialist, may I ask where you live?

Mike

ps As for the actions of the PM, it was probably caused by fear of over zealous actions from state and federal drug enforcement agencies. Oddly, this tends to be a regional problem, worse in the Southeast and all but nonexistent in California.

I'm so sorry you are having to go thru this. I've had it for over 5 years, and I know how she feels. I will say that since I had the scs implanted last November, that I have gotten some of my life back. I'm due to have another surgery to move the battery pack, but it is well worth it.
Your wife should join us here on the site. We know how she feels, and some of us have gone thru the same type of thing with the drs.

BCBS should pay for the scs. There are several requirements before they do. One is that you have the trial for a few days. It is a strange feeling to have it, but once you get used to it you never want to go back. The insurance companies almost always want a psych exam to show that you can handle having the scs implanted. It is really about the same as a pacemaker, but for a different problem.

The other thing you may want to look into is a teaching hospital. I go to Georgetown University Hospital in Washington D.C. It is quite a drive, but it is worth it. That is where I found drs to help with this monster, and they tend to up to date on the latest procedures. give it a try. I know from experience that trying to find a dr that treats rsd with meds is kinda hard. None of them seem to want to do it.

Hang in there. We're here for you

Hugs
Mary

Thank you for your replies. I will definately look into the ECT as well.

She had been seeing a psychiatrist and a therapist while she was being treated at her previous pain specialist. Oddly enough they both thought that she was suffering with normal amounts of depression given her condition if not better than expected. She has had a great attitude towards everything, even on her bad days. When I talk to her about what she tried to do, she says that it is literally the pain that drove her to it, that it is so intense on her really bad days that she can't handle it. On her normal days she says she can stick it out. I can empathize with her, but I truly can not imagine that amount of pain.


And we are in Scottsdale Arizona. When I was calling around to find her a new doc, 19 of the 20 of them said that they would not see her because of the Methadone (number 20 we get to see mid August). I guess some idiot doctor told one of his patients to take like a 700mg dose and it killed him, now everyone who benefited from it that is not a heroin addict is getting punished for it. One doctor that we had a consultation with went as far as to tell us that it is too bad she doesn't have cancer, because then there would be an end in sight and people would give you enough medication to make you comfortable.

BCBS has approved the SCS implant trial and they cover 80% of the cost, so that is good. I just can't get any of the doctors to give us a ball park figure.

I have tried to get her to get on these forums, so she has someone else to talk to other than me, but her pain is in here whole upper left quadrant and it takes everything she has just to type a few words, so she isn't on her computer much.

Selfish Spouse?
 

I have absolutely no idea of what to say to you but I just want you to know that I will keep you and your wife in my prayers. I don`t know if you believe in God or not, but if you do, if you ask he will show you the way. I pray he will watch over both of you.
I send my love and may God bless

First let me say how sorry I am that this is all going on! I would be lying if I said I have never thought about killing myself, and I think most people on here would agree that they have also been there.
She need support from people that understand what she is going through. Can you maybe type what she wants to say, or maybe you could find a support group in your area.
I really don't have much else to say, I agree with Mike on getting her the ECT. If it does not help with the RSD maybe it will help with the depression.

:hug: for both of you.

there is voice software like Dragon that would help her use the computer. i'll find some of the posts about from members that use it.


here is one thread of many:
http://neurotalk.psychcentral.com/sh...ghlight=Dragon

use the search feature onthe toolbar if this is something she is interested. there were even threads about some of the computers now already have some type of software.

Hi Allygator, Welcome to this wonderful group of RSD. Wonderful group of all backgrounds that ended up with this monster. I, too, live in Scottsdale. There is a support group that meets once a month at St Joseph Hospital, Next to Barrows Neuro. Hospital.I have had RSD for about 12 years. It is now genealized, or full body. I have a Pschiatrist, with degree in Neurology, and Pharmacology. I was in terrible shape until he put me on other meds that work on nerve pain......Lyrica, an anti seizure med is good for nerve pain and fibromyalgia, which sometimes goes along with rsd. Lorazapam is an anti-anxiety med. when my anxiety is down, so is my pain level. How is your wife's blood pressure? Mine was fine until RSD. Now it is high with drops to low. I'm on two different bp meds to keep it somewhwere in the middle. Since RSD affects the Limbic part of brain, thus depression, I'm on two different depressions meds. I take Vicodin and sleeping med. I don't think he is taking new patiets. He teaches every week on the west coast and Utah.
He has been wonderful. If you are interested in support group, let me know and I'll get back to you. I'm so sorry you are dealing with this. I'm thinking of applying for SSI as
I haven't been able to work in our business 3-4 years since I passed out one morning when I got up and pressure was 60/40 paramedic couldn't get pulse, I was out over an hour before I woke up and got my husbands attention. It was scary, 4 days in hospital. I've been thru a lot of physical therapy, which got most of my left arm in use, then a couple of years later my left hand didn't fair so well. It's stuck in like a claw position.
Swimming is the best think for the whole body.Keep moving, I hope you have a pool.
It's so important to keep the joints moving. I hope you find a Dr. The Support group is very helpful. They don't meet in the summer, but should soon start up again. loretta

The best thing that you can do for your wife is to get her to a therapist. And a psychiatrist. Antidepressants are one of the best things that happened to me in my struggle with pain. That and my therapist and my spinal cord stimulator. Believe it or not but there is always something around the corner. There is always another medicine, a therapist, an injection, a block, a spinal cord stimulator or many other options. Meditation. Group therapy. Support Groups. I've been at this for 14 of my 26 years, and I know that there is always something else. And trust me, there have been times when I have desperately wanted to end it all. Before I got my Spinal Stim, I wanted it done and over with. But then I tried another thing, and lo and behold, things got better. Believe it or not but you guys really are just at the start of this as far as using up options.

I think the fact that you are even considering your wife's suicide as an option means that your thinking is a little screwed up too and that you should consider seeking help for yourself. Being a caretaker is difficult and can sometimes warp your point of view. It kind of sounds like that's what happening to you. You need a support system too. You need to talk to other people who are in the same situation as you. You need to remember to take care of yourself as well. Sometimes things get bad, and sometimes they get really bad. But death is not the answer.

If you truly love this woman, you will tell her that she is being the selfish one. Suicide is selfish. If you want to help her, help her to feel better physically and mentally. She's in a hole and she doesn't know how to get out. Giving her permission to kill herself or even entertaining that idea will only send her the message that she really is the burden that she believes herself to be.

I'm sorry if this is a little harsh, but come on! You're asking us to give you permission to let your wife kill herself. If you really want to do that kind of thing, it's on your own conscience, not ours. Think of this as a big fat wake up call. Get her help and get yourself help while you're at it.
Lynn

I got her into a new pain specialist who will keep her on her Methadone until they get her pain under control, put her on Lyrica and is going to set up her SCS trial so that is great news!

We tried Dragon Speak, but she can not speak clearly enough for the program to work right, hopefully if they can get her pain to a manageable she will be able to type and get on these forums to talk with other people with her condition.

Loretta – I would love to get information on your group; I think that would be great for the both us. We moved down here from Oregon about 3 years ago to try to get her better medical treatment, ironically, so it would be good for her to see people other than myself and her doctors. Her blood pressure usually sits a bit on the high side, but her doctors say it is normal with the amount of pain she is in. When they tried Clonidine out on her, it dropped it into the normal levels, but they pulled her off it when they switched her to the Methadone.

Lynns- I’m not even sure how to respond to that. I think you completely missed the objective of my post. If I intended to write this in the manner that you translated it, I would think that it WOULD need to be harsh. I would never let her kill herself, thus the part about removing anything in the house that she could use to do so.

In my 2nd post I stated that she was seeing a therapist and a psychiatrist and was doing well considering the circumstances. You stated that “Being a caretaker is difficult and can sometimes warp your point of view”, I completely agree. That is why I posted on here, to have some sort of a frame of reference on my “being selfish” by NOT considering her suicide as an option, to get a perspective of people that are going through what she is. I do not know what it feels like to go through what some of you do and will not discount her pain by pretending that I know how bad she is. If I was tied to a chair, covered with lighter fluid, lit on fire and was only given a misting bottle to help me put it out (that is how she describes it to me) and somebody told me that I was being selfish by wanting to die, personally I’d tell them to #%@& off.

I hope you can find more things that help your wife soon.


** a small reminder**
Remember that everyone interprets things a bit differently online vs in person and certain subjects even more so...

Hi. I am sorry for your wifes struggle and yours as well. I know this takes a toll on the whole family. I can relate to this whole situation. I would never do anything to myself but the thoughts and words have come out like with your wife. My biggest support is my mom and I know those words just kill her so I am trying to use the coping skills I have learned through many years of therapy. I have been only dealing with rsd for a year and half but before this I had many years of therapy. Also when I went to a pain clinic day program there was lots of group therapy and I saw how different people deal with pain. As for your wifes therapists mine have said similar about coping with the current and why I feel and it is very hard but someone who deals with people in chronic pain have a better approach on ways to cope. As for the doc giving up it is a hard thing to face when one already is in so much pain and feels so scared and hopeless within. That is I think where you come in and where my mom pushed me to finding another doc and not letting me give up. A random thought and your wife may not know but ask her what you can do for her? I know for me when my mom says that I feel more heard and then she talks to me and calms me down and tells me what things we are doing to help me and it makes me stop and think. So for ex telling your wife that she is going for a scs and that it can really help her get back on her feet and you are always there for her to listen and help. Sorry if this is stupid. I just know for me when people and I am not saying you are doing this but docs,others,etc tell me how I should feel or how I should cope or they say I know how you feel it makes me angry. I would rather someone suggest something to help me or say what do you need. It makes me feel like I have a voice and can be proactive. Another side note I have had 12 years of therapy on and off and the best thing I tried with this was biofeedback. I am going to do it again when I have my surgery with the pt. Really helped me with my anxiety and self calming. Many thoughts and hugs. You are a good man. She is lucky to have you. One more thought and sorry this is a novel but what suports do you have? You can't be there for her if you have no one to support you and keep you going.

Well said. I have to chime in on this one, even though Im new to these forums. Firstly, alot of the categories in these forums, I believe are not exclusive. I have suffered from conditions for just over 14 years.
Its origins were infectious and aeitrogenic. Overlapping categories exist such as trigeminal neuralgia, tmj, fibromyalgia, RSD and CRPS/causalgia. I have been told I have all of them. I can relate to your wife and have just posted a quote on the neuropathy forum...."I don't care if I go to hell when I die because I've already been burnt alive whilst on earth"

A person who has endured, suffered, raised children, maintained a household and felt like she is being electrocuted. My spinal cord and esophagus and throat/face/neck ...certain Occipital/ TOS. All these can and are often times co-existent.

As a wife myself, I can tell you that there are probably many things she feels are being "electrocuted" but in order to "not let others down" eg. hubby, children...she endures and suffers further and bites her lips whilst her body is involved in other activities. There may even be some things she will not tell you about because she might be too embarassed.

I applaud you for your concern for your wife and wanting to do whats best for her. I applaud your attitude. My husband told me I was being selfish and that hurt so much.

....sometimes there is only so much the human body and human mind can take and knowing that there is no release and it will just keep coming back, knowing that your life must be lived in a very restricted/restrained way, coming up with new things all the time to keep yourself going, struggling to find one more thing to occupy your mind (when & if it is possible at the time) so you can hang on one more day, one more week... one more month and continue to suffer....well... it is my strong contention that someone who has done all this and fought the good fight and lived well and is ready to move on... has a right to their opinion.

Unfortunately, oftentimes once it becomes a "psychiatric matter" the patient is labelled as "unable to make competent decisions" and you will have the ability to sign away to whatever they want to do to her.

I recall you saying your wife's upper left quadrant is affected...well my upper right quadrant is badly affected, but I have it in the face/neck & other myoclonic issues in the throat. So if you can imagine being electrocuted, being burnt alive and have your throat go spastic on you all at once.
The other thing I have is a spinal cord that burns electrical, I am on Lyrica but no opoids or narcotics... I only take mersondyl when I absolutely must.

If your wife has these electocution symptoms especially in her spinal cord and body, I question the very logistics of ECT, using electricity on someone who is already being electrocuted and burning up...perhaps if some of these psychiatrist would come down with such a condition and someone strap them up & electrocute them...some further insights would be gained and this madness would stop.

Believe me, this type of central pain, is not something you want to experience for long periods of time. I have worked every last remaining brain cell off trying to list all the triggers and the things that help and don't. I will be happy to share but I applaud you for having an open mind, I think only someone who has not seen the very underbelly of the beast within (central pain) would discount your very rational concerns and respect for your wife's humanity. I said to my husband, "They shoot horses don't they"
There is nothing worse than being threatened by the person you need to share with, that they will send you to a psychiatrist if you keep talking like that.; This attitude, I believe is in part due to ignorance (even though he has witnessed me in some pretty awful pain , blackouts, & worse) and in part due to his own fear. I understand this and love him, I also understand that my condition is a drain on the quality of his life and those others around me, nevertheless my decision, if I were to make one, would be based on what is left of the quality of my life.
To put it more succintly, it would be based on how much longer I felt I could continue being "DE-SOULED" by the pain. I go to bed at night & often wish for the same thing & I wake up the following morning... and say damn! I'm still here. Since I've had this "wish" for over a decade and I'm still here , still looking, searching,,...but both hope and despair I threw out the window a long time ago. These Central pain issues are all different in intensity and nature from person to person, so I feel it is pretty useless for anyone other than the person suffering to be the final arbitar...all you can do for her is talk to her about things...anything...show that you still care...THis is the hardest part because of the touch issues and touch is so healing. ..Imagine how that in itself tears her apart...

May the force be with you my friend ...but I wouldn't leave her to the psychiatrists.
Just my 2 cents worth

V

Dear Allyeyator,

I am so sorry for all the pain and suffering your wife and yourself are going through and it is wonderful that you found a new pain specialist to work with her. Once she gets settled down with the proper meds. and feels a doctor is there for her she will settle down. I have had RSD for 4 and a half years and have worked with the same Dr. for the whole time and have seen many of his colleagues and fellows for additional consultations and have done some procedures some with success some not so successfull. The reason I bring this up one Dr. I worked with happen to be a graduate of Arizona University Medical School doing a fellowship on the East Coast maybe the Medical School has a pain program. I have found that these type of institutions have some very good pain programs and have access to the latest technology, just a suggestion.

I know how hard it is to deal with a person who goes from being normal one day then bang pain all over, that's how it happened to me. My husband had a back issue, but healthy, working so it's under control and I tell you if it was not that he has experienced bad back pain for long time periods I don't know how all this would be going he is very understanding or should I say understands. This is not a judgement on you but things will get better. Give her some time and yourself some time to adjust. I have felt desperate many, many times just as you and your wife do.

Good Luck and keep us posted.

Ann

Burnmyo,

Your post was possibly the best I have ever read and very constructive. Put perfectly.