The dreams could come from the meds. I notice I have them more when I am on meds then off. Now I am back on the Methadone until I get this surgery pain calmed down and I have been having dreams again.

Pete is right, you will learn coping skills. There will always be times you can't answer the phone or keep appts. I go through that often. I get up and get dressed but can't even go out the door. I hate answering the phone. I have several people I know I have to answer too but others I don't answer. There's times too, I don't even return their calls.

I use to have that same nightmare about Bill even though I couldn't have run him off. Now I have a dream where he leaves and I try to get him to come home and he doesn't. I know that one is because he's deceased.

Don't give up on that walking thing. I do know a lady that the Anesteolgist I go to got her out of her wheelchair. She walks with a limp but she use to take walks with me when I lived in my house where Bill and I lived. She came a long way and I know that it is possible. A lot of the ones on here can tell you how far they have came and it''s took a long time to get there. It took us about 10 years to get me to where I can do things I couldn't do at first. We finally got my pain level down to where I didn't want to kill myself from it. It can be done. It will happen for you. The most important thing to me is your Drs. If you don't think they are doing enough for you then move on and keep looking until you find the ones that will help you.

Feel better soon.

Ada

when you are with us!! This disease can be such a gloom and doom..It presents us with a lonely world...one that we have trouble understanding and seeing what tomorrow brings..But I so appreciate all the wonderful advice others have offered..I can not top any of it..Just try to take each day as it comes ..and try to not be too hard yourslef..We do all we can and at the time the best to our knowledge...if we look back so much has changed in our lives due to our RSD but try to look between the layers and you will find some positive..it is within the simple small stuff..A look..a smile or even a hug..the chirp of the birds or a sunny day.. we can fill in the spaces creating a happy feeling in our heart by doing something nice for someone else...

Bless you ....this can and is a lonely road but know that we are here for you..we are here for eachother and I know that just warms my heart everyday!!

Hugz, Kathy...Keep smiling!!!

I was in your shoes, writing about the same kind of a post on this board, not too long ago. And many of the same people who replied to you also replied to me, with the same advice...

All I can say to you is that over time you somehow learn to cope. Ada is right about the doctor part - keep searching until you find one who supports you and that you trust. Board certified Pain Management docs and Anethesiologists are good, but it depends on where you live. The best doc in the country for RSD is reputed to be Dr. Schwartzman out of Drexel Univ in Philly, but the wait is about 2 years to get in to see him. He is a neurologist. If you post where you are from on this website, you may get some recommendations from others who live in your area for docs.

A GREAT source of info is the RSDSA. To join go to RSDSA.org. They also have an archive of medical articles regarding treatments for RSD - lots of good stuff.

I would also advise you to keep moving, try to stay involved in a PT program if your insurance will allow it. The more mobile you are the better off you will be in the long run. Also, many of us see a psychologist to deal with the depression and losses that come with a chronic disease. There's so much for us to deal with.

Don't hesitate to come back on and ask more questions. That is what we are all here for. My friends here on this board have helped me out so much. Its what we do!!

XOXOX Sandy

Dear Peppermintpatty,
First, I love the name! Secondly, yes, all of what you said in your posting sounds exactly what I have gone through at different times of this illness. Basically, you are grieving your old life now. It is just as if a person died. You will go through the ups and downs just like in any death until you come to a point that you know you can go on and don't let it get you...otherwise, it wins! I am not married and thankfully didn't have to go through the stress of having to worry about a spouse leaving me. However, I have had to deal with my son who was 16 when this happened five years ago. I never realized all he had given up in his teenage years for me since we had no one else to help us. My family couldn't deal with it and still can't so my son became our caretaker at 16. It was rough the past two years for us but we take it day by day. He HATES to see me in pain and it finally got to him and he exploded. Maybe you and your honey can do simple things that maybe before you didn't do like watch a sunset, go for a walk (unless you have it in your feet/legs like me), go to a park and just sit and watch the fish or ducks...but do it together without any other stressors. It is important to spend time one-on-one and realize this is the new normal (for now) and you just have to do things differently than you used to do in the "olden" days. I hope this kind of helps you. Take care and hang in there.
kathy d

One thing to remember is that there is still life after RSD. There are still things that we can do and are uniquely our own. Keeping as much life as you can might be the most effective way to fight this disease. It gives us more trouble when we're losing the fight than when we're winning.

Bob Dylan said "He not busy being born is busy dying", and this may be especially true for us.

I just read through the entire thread again, all of your wonderful, heartfelt responses. Another tough day today... this is just what I needed to see.

Thank you all, each of you, so very much.

I've lost count over how many relationships I personally watched erode away as RSD ruins another life. From my view, I'll never accept that RSD is the cause of any decent relationship actually breaking up, but I do see that those who are already having additional problems long before the RSD hit in many situations can't take one more thing. In your case the RSD was just one more thing.

Hopefully you two will stop looking at only one cause for your relationship breakdown, but will look at all the issues that have drawn the two of you apart and then figure out if you still have enough love and desire to fix the problems and put your lives back together or if there really are irreconcilable differences that can't be fixed now or ever.

Personally speaking, I know well the additional burdens RSD can bring into a relationship, so we've just got to do anything and everything it takes so these additional problems don't tear apart both the person and the people anymore than it need to. Instead of throwing all our problems in one big pot and mixing it all together, I find it's always it bit more manageable if you keep each issue and concern separate and then deal with each to the best of your abilities. Then for the things you can't fix or change, accept that's just the new way things are going to be and go forth.

Here's hoping that the two of you will figure out that the two of you can always handle any problem better as a unit than you can alone, because even though you've broken up, the problems are still there. Instead of allowing the problems to tear you apart, my hope is that your commitment to each other will be great enough that you'll work the problems together for a common goal and that your life will once again be whole. Bob.

Oh my! I think you misunderstood. It was a nightmare LOL. My husband is wonderful to me and is the best caregiver I could even imagine having!

Thank you for your response. I agree, if something like this tears a relationship apart, there were likely already other stressors in place.

Dear peppermintpatty -

Having been in this movie for almost 10 years, I've had some time to reflect on the problem. Unfortunately, a huge issue is the tendency of not just individuals with chronic pain (ICPs) to engage in "pain catastrophizing" (“an exaggerated, negative focus on pain and is related to psychological distress, pain severity, and other negative outcomes in pain samples” or - simply put - an unproductively aversive response to the pain combined with a grasping for how life used to be) but their spouses to do so either as well or on their own. And while an underlying predisposition may have been present all along, typically due to depression and/or anxiety, it may never have been a huge problem in the marriage until the chronic pain hit. I think we're probably in agreement on this point, but I'm not sure.

In my case, I can't say that my wife’s catastrophizing was never an issue in the marriage (I was on notice when I lost a job early on), but where she had grown up entirely under the specter of her father's chronic illnesses, it completely took over when I got my CRPS. To the point that where I came to terms with this fairly quickly through a Mindfulness Based Stress Reduction (MBSR) class, she was unwilling to consider addressing the issue in any context.

This may be instructive: The significant other version of the Pain Catastrophizing Scale (PCS-S): preliminary validation, Cano A, Leonard MT, Franz A, Pain 2005 Dec 15; 119(1-3):26-37, PubMed Central FULL TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...ihms104448.pdf

Abstract
Researchers have hypothesized that pain catastrophizing [“an exaggerated, negative focus on pain and is related to psychological distress, pain severity, and other negative outcomes in pain samples”] has a social function. Although work has focused on the catastrophizing of individuals with chronic pain (ICPs), little is known about the pain catastrophizing of their significant others. The purpose of this study was to test the validity of a revised version of the original PCS [Sullivan MJL, Bishop S, Pivik J. The pain catastrophizing scale: development and validation. Psychol Assess 1995; 7: 432-524.] in which individuals were instructed to report on their own catastrophizing about their significant other's pain. In Study 1, a confirmatory factor analysis was conducted to determine the factor structure of the PCS-Significant Other (PCS-S) in a diverse sample of university undergraduates (n=264). An oblique second-order 3-factor model with two cross-loadings provided the best fit and this model was invariant across gender and racial groups. This factor structure was cross-validated in Study 2 with a second sample of university undergraduates (n=213). Results indicated that the 3-factor structure with two cross-loadings was a viable model of significant others' pain catastrophizing across gender and racial groups. In Study 3, this factor structure was replicated and the content validity of the PCS-S was examined in a sample of adult ICPs and their spouses (n=111). Spouse catastrophizing was related to ICP pain severity and interference as well as both spouses' depressive symptoms. In addition, ICPs were at a greater risk for psychological distress when both spouses had higher levels of catastrophizing. The PCS-S has the potential to be a useful and valid measure of pain catastrophizing in the significant others of ICPs. [Emphasis added.]

PMID: 16298062 [PubMed - indexed for MEDLINE] PMCID: PMC2679670 Free PMC Article

http://www.ncbi.nlm.nih.gov/pubmed/16298062

And at page 11 of PubMed version of the article:

Spouse catastrophizing was also correlated with ICP depressive symptoms. Specifically, ICP catastrophizing was not related to their own depressive symptoms when their spouses reported low levels of catastrophizing but was positively related to their own depressive symptoms when their spouses also reported a high level of catastrophizing. This result was found when accounting for spouses’ perceptions of pain and interference and their own depressive symptoms, indicating a robust effect. It is possible that catastrophizing in both spouses results in specific behaviors that may exacerbate depressive symptoms in ICPs. For instance, the typical high catastrophizing couple may consist of a worried ICP and a healthy spouse who is over-involved in the ICP’s care and emotional wellbeing (i.e. solicitous). In these cases, ICPs may be concerned about the future of their pain and perceive themselves as a burden on their spouses. High catastrophizing couples may also be unable to meet each other’s need for intimacy because they are so focused on the pain problem. On the other hand, a catastrophizing ICP who has a partner low in catastrophizing might be better able to manage their thoughts and feelings. ICPs who express their concerns to their low catastrophizing spouses may be met with support, validation, and reassurance as suggested in the communal coping model of catastrophizing. Therefore, these ICPs may be protected from high levels of depressive symptoms. No such interaction was found for spouse depressive symptoms. Spouses’ depressive symptoms may be more a function of their own interpretations of events. Future research will determine whether these processes are at work. [Citations omitted; emphasis added.]

That said, I can't endorse traditional "cognitive behavoral therapy," in which the issue of pain catastrophizing is central, where that behavior is itself addressed in an aversive context rather through an approached grounded in love of self and other. See, Changes after multidisciplinary pain treatment in patient pain beliefs and coping are associated with concurrent changes in patient functioning, Jensen MP, Turner JA, Romano JM, Pain 2007 Sep; 131(1-2): 38-47, PubMed Central FULL TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...ihms-29341.pdf :

Treatment was focused on (1) increasing strength, flexibility, endurance, and sitting and standing times; (2) assisting the patient in returning to customary work, household, and avocational activities; (3) instruction in and practice of specific pain coping strategies thought to be adaptive (use of regular exercise, pacing, coping self-statements, and task persistence); (4) decreasing use of coping strategies and responses thought to be maladaptive (guarding, resting, asking for assistance, catastrophizing); (5) medication management, with a focus on decreasing and eliminating the use of sedative and opioid medications; and (6) encouraging a shift in cognitions from those thought to be maladaptive (e.g., that one is necessarily disabled by pain, that hurt necessarily means that damage is occurring and that activities associated with increased pain should be avoided) towards cognitions thought to be adaptive (e.g., that one can control pain and its impact). Patients’ family members (usually spouses) were asked to participate with the patient during the last two days of treatment in order to (1) observe patient functioning and how program staff encouraged patient functioning and (2) meet with the program psychologist to discuss how they can best support the treatment gains made by the patient. [Page 4 of PMC copy.]

In fact, and I after running various PubMed searches, I am unaware of any evidence that strengthening exercise unless combined with the use blocks or other medical treatments, was ever proved useful for a patient with CRPS. My personal experience was certainly to the contrary: for days after a session my legs felt like they were packed with broken glass, even to the PT who discharged me!

Nevertheless, not only would I agree with the proposition that chronic pain will almost always make a bad marriage worse, there is evidence to suggest that a bad marriage (along with other chronic stress factors) could lay the foundation for RSD in the first place! Check this out:

Hostile Marital Interactions, Proinflammatory Cytokine Production, and Wound Healing, Janice K. Kiecolt-Glaser, PhD; Timothy J. Loving, PhD; Jeffrey R. Stowell, PhD; William B. Malarkey, MD; Stanley Lemeshow, PhD; Stephanie L. Dickinson, MAS; Ronald Glaser, PhD, Arch Gen Psychiatry. 2005;62:1377-1384 FULL TEXT @ http://archpsyc.ama-assn.org/cgi/reprint/62/12/1377.pdf

Abstract
CONTEXT: A growing epidemiological literature has suggested that marital discord is a risk factor for morbidity and mortality. In addition, depression and stress are associated with enhanced production of proinflammatory cytokines that influence a spectrum of conditions associated with aging. OBJECTIVE: To assess how hostile marital behaviors modulate wound healing, as well as local and systemic proinflammatory cytokine production. DESIGN AND SETTING: Couples were admitted twice to a hospital research unit for 24 hours in a crossover trial. Wound healing was assessed daily following research unit discharge. PARTICIPANTS: Volunteer sample of 42 healthy married couples, aged 22 to 77 years (mean [SD], 37.04 [13.05]), married a mean (SD) of 12.55 (11.01) years. INTERVENTIONS: During the first research unit admission, couples had a structured social support interaction, and during the second admission, they discussed a marital disagreement. MAIN OUTCOME MEASURES: Couples' interpersonal behavior, wound healing, and local and systemic changes in proinflammatory cytokine production were assessed during each research unit admission. RESULTS: Couples' blister wounds healed more slowly and local cytokine production (IL-6, tumor necrosis factor alpha, and IL-1beta) was lower at wound sites following marital conflicts than after social support interactions. Couples who demonstrated consistently higher levels of hostile behaviors across both their interactions healed at 60% of the rate of low-hostile couples. High-hostile couples also produced relatively larger increases in plasma IL-6 and tumor necrosis factor alpha values the morning after a conflict than after a social support interaction compared with low-hostile couples. CONCLUSIONS: These data provide further mechanistic evidence of the sensitivity of wound healing to everyday stressors. Moreover, more frequent and amplified increases in proinflammatory cytokine levels could accelerate a range of age-related diseases. Thus, these data also provide a window on the pathways through which hostile or abrasive relationships affect physiological functioning and health.

PMID: 16330726 [PubMed - indexed for MEDLINE] Free Article

http://www.ncbi.nlm.nih.gov/pubmed/16330726

take care,
Mike

Cry............hysterically. This usually after having coped & coped & coped until I can't cope anymore.

Then pick myself up & start coping all over again. But then I have more than just pain on my plate. I have the loss of my step-grandson Ron (whom we raised as our own) in 2007 & the loss of my daughter in 2009 to deal with. And even tho it has been years I still mourn the loss of my parents too. They were my rock. I also mourn the loss of 7 yrs between 7/91 & late in '97 from a car wreck injury when I was disabled due to a whiplash. I lost the ability to be a decent parent to my kids during that whole time & those were crucial years for them. Then to come back from that injury & a few years later in '03 to having RSD to present day. Along with having very painful Fibromyalgia since '89 & Sjogrens since 03 also, along with Osteopenia 2.5 yrs ago........(I get another bone scan in a week so hoping that has been rectified)

Yesterday I fell apart because I almost died. If I had waited 3 more minutes in my car before going into a place of business I would be dead. A car came barreling into the parking lot, right where I had been walking 3 mins previously & proceeded to smash into 2 cars, demolishing one entirely & pushing a 2nd into 2 more cars. One has no trunk left & she would have pinned me into that one. Her topper ended up where that car had been sitting. I had almost parked next to that car & it would have been my car destroyed also. We all heard the car crash. And all day after that I was a mess. I had a doctors appt after my hair appt & my blood pressure was high, as was my heart rate & that was all an hour & half after it happened. I shake just thinking about that. I have had tooooo many close calls like this one in my life. And today is my BD. Nice huh??? I thank God that I am here to be another year older.

DebbyV

DebbyV