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.