I'm starting to get a bad rsd flare. I feel like my whole body is burning and hurting and I'm not due for my pain meds again for another two hours. Any words of encouragment to help get me through the next two hours would be greatly appreciated. I'm starting to have another meltdown because of this. Thanks.

Hi Renee,

I sure wish something amazing would come to mind but honestly.. I never seem to have the right words most of the time. The one thing I do know is that you will get through this.. you've done it before. Try to relax, turn off any outside noises and try to picture something that brings a smile to your face.. something that makes you giggle inside and rest for a little while.

Are you sure your are on the best medications? I seem to recall you are using percocet for pain control? If that is accurate there are much better meds that will help you avoid so much 'wind up' pain between dosing. Are you on anything else?

Oh I meant to ask what your current strategies are for when a flare is coming on? It might be helpful for all of us to know what you are doing so that we can offer different things, if there are any, that work for us that you aren't currently doing?

Thanks Tessa. You always have the right words to cheer me up. I've just been extra cranky because of my menopause and financial stress on top of my rsd pain. Now my Great Aunt is really sick (she's my son's Godmother) and we're very close. The nursing home said we can't see her until maybe tomorrow. I have a bad stomach again and feel like I'm going to throw up. And then there's the mountain of medical bills and other bills we can't pay and my son's college tuition and his rent due soon. OMG. I just want to run and hide. I'm so overwhelmed and feel so alone sometimes. I have a supportive and loving family, but sometimes we have our stressful moments like right now, and I just want to crawl under the blankets and hide. And the timing couldn't be worse because I feel like crap. I take percs 3-4x a day and have since I broke my wrist 2 1/2 years ago. Percs along with the Neurontin from my pm dr help me deal with the intense pain I feel most of the time. I don't want to take anymore because my stomach and haven't really except when I had my two surgeries and failed root canal last year. My stomach can't handle more than 3-4 times a day usually for a long period of time. But I can't seem to handle the rsd pain if I try to take less than at least 3-4x daily along with 1800 to 1900mg of Nuerontin. My pm dr said it was a low enough amount that it shouldn't hurt me. As for current strategies, I want to get an emergency rsd flare box like Bram said she had a while back. I really need to do that soon. Right now I usually take an extra perc (I try to take just three a day, but when pains really bad I take a fourth). Today is one of those days. Then I put soft pajamas on and go to bed and lie there with my heating pad on my stomach and sore areas. I also make a cup of tea, sleepytime or lipton with honey, and grab a chocolate bar and turn on a comedy on tv until the pain subsides. It usually takes about an hour for my bad flare pain to subside. I also talk to all of you for support. You guys help me so much and I can't thank you enough. I can take my meds in 45 more minutes and then I'm going to lie down again with more tea. I feel a little better now. The flare is passing. It took a good hour and a half, but I made it through thanks to you and all of your support. Thank you for reminding me again that I have made it through this before. I have to write that down. When I'm in alot of pain, I forget everything that helps me be more positive. Thanks again for all of your help and for always being there. You're a good friend. You are all good friends. I"ll talk to my pm about maybe trying other meds, but the percs and nuerontin really help most of the time. I'll see though what he says. Thanks again Tessa for listiening to me vent. I hope you are doing okay and have a good night. Take care my friend. Sorry for the typos, my hands are still hurtng and fingers don't want move to well. Thaks again. From your friend, Renee.

you can always try this http://www.openfocustraining.co.uk/exercise.html

Hi Renee,

My heart goes out to you and though you feel at times alone with all you are dealing with ... trust me.. you are not alone. Ya' know what they say "when it rains it pours" life seems to go like that sometimes, why I don't know but, when things pile up on me I do try to remember that when the dust settles I/we will be stronger for it. It also helps me when my life is sour to do something good for someone else.. it is amazing what a simple act of kindness or gesture towards someone else does for us in return.. For instance I try to keep cards on hand and extra tea bags for when I'm feeling down or in pain and nothing else works.. I pull them out and think of people whom I haven't talked to in a while or a neighbor I don't know very well and scribble a few words and mail them off.. this has created new friendships and nurtured old ones and the bonus for me is that for a few minutes I was distracted from my own pain even if only for a blink of an eye. Giving a bit of joy to someone else when we are hurting ourselves can do little miracles in our lives. If you have a local nursing home or assisted living facility near you make a few cards and see if your husband would mind dropping them off for you? Or better yet do it together. Positive thoughts or actions that bring positive thoughts will help you.. I promise.

We are drowning in debt as well.. it sucks!!

Regarding your medications - I would strongly recommend talking with your PM about switching for the short acting percs to something else. Being on percs for 2.5 years is not good on your stomach and it isn't really meant to be used for chronic pain but, rather for acute pain. That isn't to say your pain isn't acute .. it is severe I am sure but it is chronic in nature and there are much better medications to treat it. Long acting meds or a pain patch would make you much more comfortable with less flares between doses. I'm actually very surprised even at a low dose that you have been on percs for that long.. doesn't give me a good feeling about your PM doctor really. No offense.

Do you like to read? I have a hard time reading because of my TBI but I really enjoy listening to books on CD or using my 'Audible' application on my phone to listen to books I've downloaded.. right now I'm listening to a book called "DO LIFE" by Ben Davis.. it is fantastic and very inspirational no matter what you are dealing with in life you can use the many tips Ben gives from his own struggles and apply them to your own situation. I love it!!

Anyways.. hang in there Renee..

Tessa

Thanks Tessa for your kindness and advice.
I will try the letters and books and talk to my dr about the percs. I will try to do something nice for someone too each day. I've been such a crank lately. The pain and hot flashes make me mean and I don't like being mean. I'm sorry I was mean to you and the others. I didn't mean to be. I'll try to be more positive and thanks again for being there once again for me. You are a good friend. I feel better now and am going to make my second cup of tea with some chocolate on the side and try to sleep through the night hopefully. I'm sorry you have money troubles too. I thought I was the only one with all this debt. It does suck that's for sure! Well thanks for cheering me up and getting me through my pain. I hope I can someday be as strong as you. You've been through so much too and I admire your positive outlook on life. Take care and have a good night.
Renee.

Thanks Kevscar. I appreciate this link. I started reading it tonight and will read more tomorrow. It's very interesting and helpful. Thanks for all of your kindness and support too. You guys are the best! I hope you are having a good day and have a good night. Take care.
Renee.

How are you today Renee? Hope things seem (and are!) a bit easier all round.

Sounds like you have a lot of worry/stress going on - on top of the CRPS crap, that's a lot to deal with and of course the stress affects stomachs particularly badly, which is the last thing you need... Try and relax when you get a few minutes - slow, deep breathing exercises, consciously relaxing your shoulder and chest muscles. If you get a bit longer to yourself, add in soft lights, music and nice aromas to help relax you further. It really helps me just to do the breathing sometimes

Pain, stress, worry, guilt, financial and emotional burdens and worries.... Me too , and I think most of us understand the financial aspect of this particularly. Along with the guilt that we wish we could help more with the money side...

There's no easy answers. Hang in there and may better times be around all our corners

Bram

Thanks for your caring and helpful words Bram. I didn't have any rsd flares last night and actually slept through the night without waking up in pain. I feel much more rested today. My great aunt is still sick and my husband and I are going to try to see her tonight. I am trying to be positive that she will get better, but it's hard. My emotions are all over the place between my great aunt being sick and my illness. I am trying to get my head together and stay calm and positive through it all, but it's hard. Then there's the finances. My husband and I were starting to plan our retirement before I got rsd. We didn't plan for something like rsd to come along and mess all our plans and finances up. Now we are just trying to keep sane while paying little by little the mountain of bills we have. My husband has good insurance thank goodness, but when someone has a chronic illness, even good insurance isn't enough. You need to win the lottery or something like that to be able to keep on top of all the medical bills. It's strained our marriage and I feel terrible guilt about this. And we can't help our son out as much as we wanted to now because there's nothing left to give financially. I'm afraid my poor husband will have to work forever and I feel so guilty again. But my husband and son both try to let me know that we will get through this as a family one day at a time. I know that sticking together is most important and that we keep loving each other. I used to talk to my great aunt every day. She is so special. She taught me so much about life. She would tell me that we need to be grateful for what we have not what we want and that even though life was hard at times, we had to accept whatever came our way and to handle it with grace. I'm trying to keep those words of wisdom in my head so that I don't fall apart. And the kindness and support I've gotten from all of you is priceless. I know we have never met, but I feel like I've known all of you forever. And I consider all of you part of my family because you've been an important part of my life.
I'm sorry you're having a hard time too. I wish I could help all of you get through your tough times and take all of your pain and stress go away. All I can do is let you know that I understand and that I am here for you if you ever need to talk or need a shoulder to cry on. I think the word you used to describe this rsd journey we are on hit the nail right on the head. You once said it was exhausting. I totally agree. Exhausting to be in pain all the time is the perfect word to me. I am exhausted as I think we all are, but here we are getting through another day together. I'm glad we are friends and have each other to get through another day together. I look forward to talking to you each day.
Thanks again for all of your kindness and I hope you all have a good day with as little pain as possible. From your rsd friend, Renee.