[bigsav32]

i think my title pretty much speaks for itself.just wondering if there are more like me?

[marida]

Originally Posted by bigsav32

i think my title pretty much speaks for itself.just wondering if there are more like me?

I think its very hard for anyone to TOTALLY understand. I too feel no one has the sympathy and understanding we need when in the pain were in. That's why we all need to speak to one another since we only know what its like. I hope your doing ok. I am looking for a chat room to speak live to people. Regarding opioid + suboxone.. I've been on suboxone since July of 2009 and hate them. I can't wait to be off them forever. It would be nice to hear from you.
Marida

[fmichael]

Originally Posted by bigsav32

i think my title pretty much speaks for itself.just wondering if there are more like me?

There sure are. There's also a fair amount of interesting literature out there that's free for the taking and well worth the read, but I think these two are the best:

Empathic and nonempathic interaction in chronic pain couples, Cano A, Barterian JA, Heller JB, Clin J Pain 2008 Oct;24(8):678-84, FULL ONLINE TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...ihms-43637.pdf

Abstract
OBJECTIVES: Empathy and empathic response are receiving greater attention in pain research as investigators acknowledge that other forms of interaction may impact the pain process. The purpose of this study was to examine validation and invalidation as forms of empathic and nonempathic responses in chronic pain couples.

METHODS: Participants were 92 couples in which at least one spouse reported chronic musculoskeletal pain. Each couple participated in 2 videotaped interactions about the ways in which the pain has impacted their lives together. Trained raters then coded interactions for each partner's use of validation and invalidation. Couples also completed surveys on spouse responses to pain, marital satisfaction, and perceived spousal support.

RESULTS: Correlations demonstrated validation by spouses of persons with pain was associated with punishing, solicitous, and distracting spouse responses to pain, marital satisfaction, and perceived spousal support. In contrast, spouses' invalidation scores were correlated with punishing spouse responses. Exploratory factor analyses were then conducted to determine the extent to which spouses' responses to pain and spouse validation and invalidation loaded on similar factors. Validation and invalidation are more closely related to punishing spouse responses than to solicitous or distracting spouse responses.

DISCUSSION: This work suggests that empathic and nonempathic communication are distinct from solicitous spouse responses. The findings have implications for theoretical and clinical work on social factors in pain.

PMID: 18806532 [PubMed - indexed for MEDLINE] PMCID: PMC2562912

http://www.ncbi.nlm.nih.gov/pubmed/18806532

AND

A preliminary investigation of affective interaction in chronic pain couples, Johansen AB, Cano A, Pain 2007 Nov;132 Suppl 1:S86-95, FULL ONLINE TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...nihms34584.pdf

Abstract
The objective of this preliminary study was to examine the extent to which affective marital interaction related to depressive symptoms in persons with chronic pain and their spouses and to pain severity in persons with pain. Couples from the community completed self-report surveys and engaged in a videotaped conversation on a topic of mutual disagreement that was coded for three affect types (i.e., anger/contempt, sadness, humor). Humor was positively related to marital satisfaction in both partners. Spouse anger/contempt and sadness were positively related to depressive symptoms in spouses. Several significant interaction effects between couple pain status (i.e., whether one or both partners reported pain) and affect also emerged. Specifically, sadness in the participant designated as the person with pain was associated with greater depressive symptoms and pain severity when only he or she reported pain whereas sadness was related to fewer depressive symptoms and less pain severity when both partners reported pain. The relationships between spouse anger and spouse depressive symptoms and between spouse humor and pain severity in the person with pain were also moderated by couple pain status. These exploratory findings can be interpreted in light of emotion regulation and pain empathy theories. For example, partners who have not experienced pain themselves may fail to empathize with persons in pain, thus preventing effective emotion regulation. When both spouses report chronic pain, expressions of negative affect may instead promote emotion regulation because the affect is experienced with a spouse who may be more empathetic.

PMID: 17521810 [PubMed - indexed for MEDLINE] PMCID: PMC2100025

http://www.ncbi.nlm.nih.gov/pubmed/17521810

Bottom line: Heaven help the chronic pain patient whose partner is already inclined to depressive anxiety, the patient's pain will be just one more terrible thing that has gone wrong in the partner's life. And not only will that partner be unable to be empathetic, but the partner will shy away from intimacy of any kind with the patient, lest the partner think that s/he may actually feel any of that pain.

If ever there was a situation that called for professional marital/couple therapy, this is it. I just hope that other people have better luck getting their partner into (and staying with) therapy than I did.

Mike

[loretta]

Originally Posted by bigsav32

i think my title pretty much speaks for itself.just wondering if there are more like me?

Hi bigsav, I understand what you are saying. I would say a lot of us have felt that way, at least in the beginning. It was only after doing his own research did my husband even begin to understand RSD. He has read a lot on NT and gone with me to my psych and started to be more understanding. It's better now, but agree that it would be difficult to know what RSD is like unless you have it. Some people are inwardly more compassionate than others. Something that may help is to express yourself in how you feel. And how you feel when he doesn't seem to understand. Tell him what you need from him, ways that he can show love and compassion and how much you need it. Ask him what you can do to help him know what you are going thru.
This condition is like a lot of other conditions, like losing your limbs-not being able to walk, run. Losing our health is devastating. We go thru a grieving process and learn how to cope with various losses. Reading a book on grieving may help. I spent 2 plus years of weekly and twice a week when my parents died. It also helped me when I lost my health thru RSD.
Please let us know how you are doing and how we can be of support. One of your new friends, loretta

[finz]

The onset of my pain issues is not what started my marital problems......it was more like the final nail in the coffin.

I am still married. My youngest just started high school so we are trying to stay married until he graduates.......especially because my husband considers anyone who takes antidepressants as unfit so he would try for full custody of the kids (not saying a judge would agree, but both of us blowing huge money on lawyers would also affect what kind of housing I could afford post divorce and I'm concerned that my inability to drive most days and to get out of bed some days would affect custody.

So ummmm.......I totally understand having a spouse who refuses to even try to understand living with chronic pain. If you have a partner who is trying to be supportive but struggling with it.....I've got no experience there.

[SandyRI]

So sorry...

XOXOX Sandy

Originally Posted by finz

The onset of my pain issues is not what started my marital problems......it was more like the final nail in the coffin.

I am still married. My youngest just started high school so we are trying to stay married until he graduates.......especially because my husband considers anyone who takes antidepressants as unfit so he would try for full custody of the kids (not saying a judge would agree, but both of us blowing huge money on lawyers would also affect what kind of housing I could afford post divorce and I'm concerned that my inability to drive most days and to get out of bed some days would affect custody.

So ummmm.......I totally understand having a spouse who refuses to even try to understand living with chronic pain. If you have a partner who is trying to be supportive but struggling with it.....I've got no experience there.

[pooh_ac]

I think what has helped my husband the most to understand it to see the difference I had with pain control, He still does not totally understand but he can tell by what I do and how I act when my SCS is not working. Couples counceling helped for a short period of time but he tends to revert. He is also Bipolar and does not take his meds so he thinks I should not take any medications for my pain or my depression. He does listen to a friend of both of ours who is also my PCP. When he tends to "forget" I call our friend and he will remind him about my status and the fact that my pain and depression are both real
Hope it helps to know we understand!

[finz]

Originally Posted by SandyRI

So sorry...

XOXOX Sandy

Awwww.......thanks !

Meh, can't change/fix it.....it is what it is. I focus on the good days when I get out or having fun with the kids (which can be a challenge as they are teens......MOST days I still cherish them )

[beyondmywitsend]

Originally Posted by bigsav32

i think my title pretty much speaks for itself.just wondering if there are more like me?

I was just saying the same thing to myself as me and mine argued today about my lack of desire or ability to really contribute to the household a lot. Hope i have replied correctly. NO ONE understands. NO ONE. You start to feel crazy.

[fmichael]

Let me be clear. I did not mean to suggest that the "non-empathetic spouse" (NES) was NECESSARILY failing do everything s/he could for the pain patient. Rather, the problem is the spouse finds the patient's pain PERSONALLY THREATENING IN IT'S OWN RIGHT and so avoids deeply personal engagement.

A clear example in my case was when my wife was unable to perform some stretching exercises on my feet after my PT had brought her in for a session devoted to the topic: she couldn't bear to touch them. In fact, whenever I have come up with a reason for her to put her hands on my feet ("Does the shiny skin on my soles feel any different to you?") she has declined. It has of course interfered with our lives in what are perhaps more significant ways (my loss of physical/emotional human contact outside of therapeutic context) but it is her refusal to touch my feet that I find most telling. As through to do so might trigger the Vulcan mind meld.

THAT'S what makes the situation so difficult. And in order to get around it, the NES has to confront some deep pain in his/her own life.

Mike