I don't know if you guys experience(d) it, but I was healthy before the RSD hit me (RSD because of a work related injury / car crash), and I wasn't at all used to doctor's visits nor used to taking medication. I actually felt quite guilty for having to take the meds, and after 5 years on Neurontin/Buprenorphine I still feel guilty. Every single time I have breakthrough pain, I wait too long to take the sublingual pills for breakthrough pain (which actually makes it worse). I still haven't learnt to cope with pain. It's hard to live with and hard to manage well. Heck, I feel guilty for having RSD and I don't even know why. I do know when it's best to take extra pain medication, but I often think... well, I'll see *if* it breaks through, which is a wrong response because I know it *will* and is going to break through if I go outside for instance or at night, and still I wait and see if maybe this time it won't. I've been told it's a wrong response, better to intercept the pain in time (it is chronic). But it's a whole other mind set and I can't get used to it, however chronic the pain is.

How do you guys cope with breakthrough pain? It's a steep learning curve for me...

A few thoughts and first I am sorry you are struggling with everything. I can relate as I never like to take break through meds and when I do it is when the pain gets to an ER state so to speak. I have been told that once it gets to that point the meds will not work as well. So I am trying to find a better balance of my timing. I have never been on as many regular daily meds as I am now but after 2 years of this I realize at this time I need a better quality of life then I was getting with rsd with little med assistance, I am trying to think of it as a temp situation till I find a better treatment. If it does come to the point where I need to take meds for ever but I have a better life then I will accept that. Really to me I am weighing the best option in a bad situation. There is no ideal here other then no pain or rsd.There is often a stigma I think in pain meds but one does not live in your shoes and trust me if they did they would be singing a different tune. As coping mechanims can help but only get so far when the RSD flare up is on. I would encourage you to look at why you feel guilty for having rsd. You did not choose this or do something "bad" for this to happen. These things happen to good people. Why I don't know. You deserve a well and happy life that is pain free. As for coping with this I am not doing so great either. I have went back to mental therapy and am trying to use some of the coping tools which at times help but others when the pain is so bad don't. I will say you reaching out here for support is a great step in coping with RSD and everything. So good job. Hope you feel better

Hello

I know where your coming from with the guilt I have been there. Daniella got it right when she said good things happen to good people. You didn't ask for RSD/CRPS your just trying to live with it. Some days are more difficult than others. I use to take life one day at a time now I take it one hour to the next.

I have fullbody RSD with my heart and lungs being effected. I try to anticipate my pain. For example if I am going to do something that will flair my pain. In addition to my daily meds. I will take Skelaxin, Naposyn and percocet to help conrol the pain. For my sons wedding I knew it would be a hard weekend for me pain wise. I started extra medication a few days before and after the event. I have to pace myself when it comes to doing things. I cook dinner and then after eating I need to rest before I stand on my feet to clean it up. My children are grown and not at home. My husband works very very hard. I try not to ask for help. When I run the sweeper I doe one room then rest before the next room. I listen to my body when it says rest I rest. Like you said the medication gives me a quality of life so I have had to accept them as a part of keeping me going. I felt guilty at first but once I accepted I needed them to have that quality in life I did'nt feel so guilty.

Do not allow your life to be defined by RSD. Acceptting that we can't control how it will make us feel but understanding what we can control in our life is important. Once I accepted I have RSD and then I educated myself on what I'm dealing with things didnt' seem so out of control. It takes time to get the right mix of medication and doctors once I did life got much better for me. RSD caused me to change the way I live my life it does not run my life.
I hope you fine the comfort and peace you deserve!!!
Take care,
Sherrie
PM whenever you need to.

Thanks Daniella & Sherrie for your kind words.

I know it's wrong having the feeling that you can't move forward in any way, but I have that feeling (I don't want any part of RSD). I constantly feel like my body dictates me. I feel a victim to this unpredictable monster called RSD. I have to listen to it daily, as it tells me what I can't do over and over again, it's as if it has you on a leash and it pulls you and pulls you as you try and break free from it, just to take one more step, or to feel less pain. There's nothing I can do. The only power I have is saying, let's see what it does today. By witholding the breakthrough meds I want to see if it improves today, maybe today I won't need them. It's like I want to one day at least wake up at night feeling like I don't need to take more meds, that it's getting "better", while I know perfectly well that it's not getting better. It's kind of the hope that I can't let go of or maybe I hate not being in control of my own body, having to depend on things to make it function. And it's only my breakthrough meds I have these problems with, when the pain kicks in again... I freak out!

Summertime is great for me, in the sense that up until now (touch wood) I don't need to take as much breakthrough meds during that time. But the rest of the year can get pretty damn depressing.

It varies, I guess. Sometimes I cope better.

It was difficult for me to adjust how I do things because of my RSD. Once I realized I could still control my body I did better. The medications are needed to help achieve the control. The help give us quality of life. I see a pain management physcologist doctor who helped me with relaxing techniques that help me sleep at night. I use to live one day at a time RSD makes you live one hour to the next. Stress is a huge aggrivator for our pain. I watch just enough news to be informed. I try to watch and read thing that make me laugh. I don't engage in freindships with people who will drain me. When those kind of people are around I try to control the conversatin and allow only positive conversation.
The hand that life has dealt to us is complicated. It take time and patience but we must keep control or our life and not allow RSD to control it for us. Don't allow your life to be defined by RSD.
Take care and I hope you find peace soon!!!
Sherrie

Sherrie, that was beautifully said. It's a switch I need to make, I know that, and yet I don't know it. Theory and practice vary so much. I need to learn to think differently about the whole situation (coping strategies?). I should look at it the other way, and stop fighting a fight I can't win. I should be able to say, should be saying to myself, this pain medication gives me control to improve my quality of life. Quality of life!!! It's still hard, I am trying and I do take the meds (but often too late, when the pain has broken through completely, instead of when I start to feel pain seeping through), but I still haven't quite accepted it yet, that it's there for life. I do try. It don't always cope well.

What you say is so familiar. I can't handle stressful situations well either, or people who drain me, or pressure, because it sends me and my body into some kind of overdrive and the pain and symptoms get worse or seem worse - it's like I can't switch off anymore. I too watch as much news as I can take, and try not to worry too much, but there are times when it's inevitable. Some things are thrust upon you no matter what.

I'm really grateful for your replies, and I appreciate the support! Thank you!