thank you...i definitly have a lot to reflect on.

*edit* Let me be very clear when I tell you all I love my wife and am doing everything in my power to keep our relationship healthy.

I really appreciate your feedback and my level of acceptance of this grows each day.

I feel it is not ok regardless of how high her pain is to be taking more meds than her doctor rx for her. This can be dangerous. So by you stating what you did to her it is out of care not that you want her to hurt. Could you maybe go with her to a doctor apt and explain this to the doctor? Maybe he can adjust the meds or add in a safe one.
As time has went on I have really worked hard to change how I respond and speak to my support my mom. I used to not on purpose but say things that I think made her feel guilty or get angry easily. She stated that I did those things and it opened my eyes. It is not ok just because I was in pain to do this. So now when she suggests something I try to be open to her suggestions and know it is out of love. If I am hurting or upset I either say I am not up to talking or try to remind myself that it is not my moms fault and that I need to be calm and cope better. Same with your family members.
This is not easy I know and takes time but I think you both need to speak up for yourself. In the long run it makes things better for everyone.

Good Morning,

Her meds were adjusted yesterday, so I am hoping the new cocktail will have a positive affect on her.

We were given some very disappointing news that her SCS has basically become ineffective and that we needed to stop thinking about her RSD in terms of pain levels but instead in terms of her levels of activity or functionality. We are fairly young and it is really hard to wrap my mind around my wife never ever being able to do certain things with me and our kids.

Last thing to try and get the RSD under control will be the Ketamine infusions. Problem is the treatment that has been suggested to us is not covered by insurance and would be quite expensive. *edit*

Thanks!

Look into fighting the insurance company in order to pay it. This happens all the time with infusions. Often times you will prevail. Talk to her doctor who can help or give good advice. Matt I feel for you and your wife. I can relate to you because my wife has RSD--nearly 10 years now.

Wow...10 years!

How dibilitating is her RSD? What level of activity are you two able to do? Have you raised children around the disease and how has it affected them? How long have you and your wife been together? My wife and I were best friends for about 6 years before we married about 5 years ago. Now she wants the best for me and our kids...and she thinks that will be without her. Sometimes I think she is right, but the fact of te matter is that she is part of our family and needs us. What kind of lesson would I be teaching our children if I judged people by their health or intolerance of others?

I think we probably could pay for the treatment up front (if we could afford it) and then fight to get it paid...but really we just need to have it covered and worry about other costs (co-pays, plane tickets, hotels, etc.)

Thanks!

We haggled with the insurance company BCBS who rejected payment for ketamine infusion, but it was brief, not long at all, maybe a couple of weeks until they approved it with a letter from her doc.
We do not have children, if we did, things could have turned out a bit different. I can't imagine the mess we would have been in. We've been together 30 years. We met when she was 20, I was 21. We are fortunate that she worked for 30 years and eventually was able to receive SSDI and medicare but that is a battle that was stressful and took some years off of me. We did argue constantly and still do sometimes. My wife had her bags packed for a couple of years, ready to bolt, and did a couple of times but came home after a few hours. The reason was she felt the same as your wife---being a burden. But the stress is what really takes a toll on those who have RSD and the trick is to relieve that stress in conguction with decent treatment for her pain. The constant unrelenting pain effects the thinking, always keep that in mind especially where logic is concerned.
However, I did come to the conclusion long ago that even though our long term goals have changed I could not ever leave her. I'll look out for her like I did when she was healthy. So, we changed our plans which aren't bad just not as wealthy. The scaled down plan which has its positives for sure.

As far as activities, well they've changed. My wife can walk even though her RSD has spread to all limbs. Her original injury was her right wrist. One thing I need to learn how to do is go out and have fun on my own because many times she just isn't up to it. She has no problem with me having a night out, its me that hesitates, but not always. If we go out together to socialize somewhere I make sure she has a place or spot she can rest if need be if the music-people get to loud.

If there is anything I do for you guys just let me know.

jim

Hey Jim,

I really appreciate your reply.

My wife was diagnosed with RSD a little over a year ago. She had a SCS implanted in February and a revision less than a month ago because the paddle lead had moved. Now the coverage is causing the RSD to flare instead of calm it down. There had always been hope of a change of pain level before but now it basically seems like I need get used to the idea of it beginning to spread (she already is starting to feel it in her other arm and back) and our new lifestyle as a disabled family.

We are fairly young and have two children four and under. I work a full-time office job during the day and have begun to look for a graveyard shift part-time to try and cover child care for my kids while I am at work. We have just completed the applications for SS benefits. Unfortunatly my wife has not worked for 30 years...but we have heard that she can tap my benefits as a spouse. Hopefully she gets approved the first time and can relieve a little financial stress.

I hear a lot of what you and others here are saying about the pain causing the argumentative nature and misguided logic...but how do we actually handle those situations? With many "yes, dear" and "whatever you say dear"? My wife can read me clear as day and knows when I am just agreeing with her to avoid an argument. Do I have to just get used to a lifestyle where I occasionally know my wife is going to blow up at me or my kids for no real reason? Do I just get used to the occasional mean spirited comment and know that in a couple of hours, or days, my loving wife will return? Doesn't seem like much of a happy life to me.

Thanks!

Sorry for the delay Matt, we've been out of town. What is surprising to me is how quickly she was approved and received a SCS after being diagnosed with RSD. For my wife it took around 2 years before doctors started whispering the name RSD. My wife's approach to RSD (keep in mind everyone has their way of dealing with this monster) is avoid all invasive procedures at all costs. The most invasive procedure she tolerated was a 4 day ketamine infusion and a 1 day lydocain infusion, this after 4-5 years with the disease. No help there. She also will get up a move about, work her gardens/flower beds, cook dinner and pack my lunch. Being idle is not good for those with RSD. Matt you may want to post on the SCS sticky thread also about the issues your wife is having with her SCS.

Matt, your wife most likely feels extremely guilty and has let everyone down, I can not stress that enough. The constant pain is something she is now trying to deal with constantly, every minute, everyday. She may be feeling that she is a drag on the family and must leave. She will need to learn to cope with her condition and others need to help her do that. Not easy with children for sure, but plenty on this board have done it. It just takes time. Stress is what really makes things difficult, money and the lack of pain control is usually the culprit not to mention RSD itself. Also, RSD changes over time. My wife explains it this way in the early days: Sharp burning pain, twinges of electrical pains shooting throughout her limbs. Now she describes it as a deep in the bone pain but not as bad as the early days except this kind of pain spread (I'm sure she'd tell it differently). Make no mistake she is in a lot of pain today but is a different kind. My wife also has a place in our home where she can sit and be alone if she needs it. I will say at this point in time things have improved but still not easy until we institute plans to settle outside of the rat race we now occupy.

Matt, do you have help from extended family members?

Jim,

I am "Matt's" wife, I do believe. We have always tried to stay on seperate support groups but I accidentally stumbled upon this forum and well just knew. As hard as it is for me to read through these posts, most of these things are issues that the two of us have discussed. *edit*
RSD is devestating. I am trying my best to learn to cope with the situation, although it is a great struggle. I have recently started a blog as a way to connect with others going through similar situations. Having a family with RSD is hard, to say the least.
Jim I wanted to thank you for all the supportive advice you gave my husband. He was feeling a sense of relief by being able to communicate with you. I don't believe he will be returning to this site now though, as unfortunate as that is.
To all the family members out there, thank you for helping all us RSD patients as we try and cope with this disease.
Eli

I just wanted to defend myself, just a bit. I have NEVER taken more Rx medication than I am prescribed. My husband was referreing to an alternative medication that is not an opioid or narcotic, also ALL of my doctor know I'm on the medication and my usage. For some reason that was the only thing I really couldn't understand. I know it's different being a spouse than a patient, but I really just felt like I need to say that I have NEVER taken more prescribed meds than allowed. Thanks for letting me vent.