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What do you do when you hit rock bottom?
This morning I really just crashed. I'd had a horrible nightmare that my husband left me due to the unrelenting stress this has caused for our family. He of course reassured me he married me for better or worse and that this would absolutely never happen. I believe him beyond a shadow of doubt, by the way.
But nonetheless, this has probably been the worst week I've had since my diagnosis. Part is the never-ending pain; on top of it is the emotional aspect, the helpless feeling knowing that there is nothing I can do to make the pain go away. I feel just beyond help. I have missed appointments this week, avoided phone calls, don't want to go anywhere, don't want to be around anyone. Can anyone relate? What do you do to escape the pain cycle when it gets so bad? Does this sound typical in the CRPS game? |
PMP,
I totally relate. But, I don't remember how long you've had your diagnosis, but, You Will learn coping skills, and that will help alot. When I feel REALLY Bad, I do all the normal things. I cry, Pray, meditate, zone out, and pray some more, For All Of Those In The World, Who Have It Worse Than Me... I pray for my friends, I pray for my enemies. It's not too long, before you realize that it "AintSoBad"...Or, as the song goes, "Living Aint Quite So Bad, Afterall..." I hope you feel well, have a good weekend! Pete asb |
Dear Peppermint; sorry you had such a rough morning and yes you will find that this illness will take you as low as you can go on a continual basis. I hit rock bottom a few times a week, but...as they say, when you are on the bottom there is only one place to go and that is up. I think that is part of the torture of dealing with this illness is the crashing scale is so frequent and its highs can be high and its lows are low. But as time goes on, you learn techniques to somewhat keep a balance to where your highs are not so high and your lows are not so low. I have learned meditation, exercise, positive affirmations, God, prayer, laughter, living in the moment, listening and respecting your body, and I stopped fighting the inevitable. That does not mean I concede to the illness, I am just not going to use my energy trying to fight the messages that my body is giving me. Energy is everything, I just keep reinforcing myself that this will pass and sometimes I just laugh my way out of it. It is a ridiculous illness to manage, so I will put my energy into positive things and use other techniques to bring me out of the negative. Your ok, your fears are real feelings, just try to find a way to cope through the negative, don't deny yourself or your feelings or pain just find a positive way to manage it and in time and perseverance you will gain some balance and control. God Bless, and be good to yourself, don't beat yourself up over something you can't change, just change what you can.
Jeanie |
Peppermint , I too am trying to learn these coping skills as sometimes it is hard to see the light at the end of the tunnel . I have only been a member here a short time but have gotten invaluable advice and support . I tend to shut down and just want to be alone , and then I will realize how much worse it could be . I say a lot of prayers and try to think of the positives no matter how small they may be . I will remember the good times of the past and be happy in the memory of them.....The one thing that I have noticed out of having RSD is I truly appreciate the little things more and take very little for granted . Good luck , hope you find what works for you and take care !
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this is exactly what my heart needed tonight.
hannah |
Everybodys rock bottom is different and for different reasons.
When I was diagnosed with RSd years ago, I was not married and was only looking out for myself. A few years after my diagnosis I did meet someone and got married. Then a few years later we had out first child. A girl. But, a month before her birth, I was hurt at work. Started out as something minor, but has led to 3 surgeries, loss of job, stress, depression and know no income. What really hurts me, even as I write this, is when my daughter was learning to crawl and walk, I couldn't walk or crawl. 3 surgeries meant I was non weight bearing and stuck in bed for weeks. I cannot ever get that time back to help her walk or times when she goes to the fair or to the store with my wife and I can't because of the pain. I lost absolutely the first 2 years of her life. Even today, I have to limit what I do. And still loose out on her at times. The feeling of not being able to play with her and her being attached to her mother so much, that it is hard for her to just play with me. I am breaking that barrier down slowly. It is painful everyday to see her and to now what I lost out on. But I will do anything for her and yes I do have my days where my pain takes me away even when I am right their. My RSD, tarsal tunnel syndrome and back pain are nothing compared to the pain of not being able to play with your child or do things actively with your child. I vowed never to let anyone treat me the way my company commander or first sergeant did when I was in the Army and diagnosed with RSD, but the laws that allow WC to get away with what they do to injured workers is a disgrace. I will fight for every dang thing I am entitled to. I will never back down till I feel I have gotten my just medical care. I may never get those 2 years back that I lost with my little girl, but I will never let anyone take that away from me again. Sorry for the rant as I really needed that. |
Bugguy , Children are truly a gift from god imo , I could not imagine how tough those two years had to be .... I was diagnosed in 99 and now have a almost two yr old granddaughter who I have missed out on a lot of activities as well , however I am able to be with her on good days . She has attached herself much more to my wife as I cannot do a whole lot with her and that does hurt , so in a way I do understand where you are coming from. I have learned to hold on very tightly to the good memories we create and do the best I can with it . I think children have a 6th sense of things as when I am really hurting she will curl up next to me on the couch and just lay with me .... which is unusual for her as she is normally 90 mph .... Sorry for the time you have lost as I know it cannot be replaced but just make sure to remember the goodness a child brings into our lives ! Take care ...
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I am sorry that you are struggling with all of the details that this disease brings you too, the choices that we make under distress, the worry, the weakness that one feels when living in this pain and the losses that we all suffer. It is so overwhelming, and just plain wrong. I am sorry you have gotten invaluable advice and support from anywhere but especially here. Never feel that you are not being heard the fact is that you are writing and people are reading your posts. I do not know you, you don't know me, but I pray for you everynight. Sometimes, I just read the posts but feel so horrible myself I just shut it down and pray. I can share with you some of my coping skills and I do, I have learned to meditate, I have learned to manage my time around my pain, I have learned many exercise techniques, I love to cook, so I get creative with that, I keep my house up pretty nice, I am tackling the destressing issues now, but I mean seriously, I am starting to get lethargic. The truth is, I would rather be doing anything besides dealing with this disease. Focus on the little things, they mean so much, next time your grandbaby is in your arms really take a deep breath and focus on the moment, feel her in your arms, you will be amazed. Check out the sky after a horrible storm as the sunsets so beautifully, listen to the birds, go fishing, if you like to fish, take a walk and as you are walking look around and listen. You will learn your own way my friend, its not easy and I am not going to try to convince you any different. I have days where I can't do any of the above things, and it is so boring to say the least. But I do get up the next day and attempt them again. I know deep down in my heart whether it be a good day or bad day that I have done the very best that I could do. Maybe not what I use to be able to do, but that was then and this is now. I miss working too and plan to go back to at least part time, not what I was able to do, but I am keeping the door open for something that will work for me. I have great passion for animals so I am considering donating some time to a shelter. Just ask yourself every morning what can I do today to make somebody elses day brighter. There is no magic bottle, in time, you will find a way to manage and regain some quality of life. I am not there yet and may never get there, and don't care... but today I hugged my daughter and sent my son off to the lake with some cookies and banana bread, for this I am grateful. Just take it a day at a time, don't overwhelm yourself with too many thoughts and if you have to (like me my brain just keeps going) then try to fill them with good thoughts. You are a great guy with compassion and very knowledgeable, be patient with yourself, this is not a test, we are not in a hurry to get nowhere! LOL. God Bless you my friend, may peace be with you. Jeanie |
Jeanie , Thank you so much for the kind words ! By invaluable I meant - Extremely useful; indispensable , so for that I am very thankful .... I have been taking the small things in a lot more as you mentioned and with the help of this site and family am making the best of this stuff ! And thank you so much for the prayers , that means more than you will ever know ! Looking back I should have joined this site a lot earlier as I used to just drop in and read the post , but it is certainly and outlet when you need to just put your thoughts out their instead of keeping em bottled up ! Yours and others advice have truly been blessings and have taught me a lot of things about myself that I did not know....bless you and thank you "friend" ! take care ...
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I so much appreciate all of the time you have each taken to share your stories with me. My one year anniversary is rapidly approaching and I think that's part of what bothers me so much, the fact that I was originally told I should be just about back to normal in a year, and here I am still in a wheelchair with no relief from the pain. If anything, it has gotten worse.
I'd love to walk again, but I think I could somehow accept being in a chair for the rest of my life. It's the debilitating pain and the opportunities that it takes away from me that I fear most. Thank you again, each of you, for your encouragement. I don't post as often as I should, but I read faithfully. This is a tough disease; as much as I hate that each of you have it, it's at least comforting to know we're all in this thing together. :grouphug: |
Hi,
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 |
you are never alone ...
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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!!!:grouphug: |
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. :grouphug: |
RSD side effects that change our lives forever
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. Quote:
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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. |
"pain catastrophizing" or just unproductive aversion
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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 Abstracthttp://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 Abstracthttp://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 |
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