How to deal with downer days?
 

I have RSD in my feet, hands, neck and shoulder and it has been a really bad pain week for me. Plus I started a new med (keppra) and I just can't seem to get motivated to get out of bed. I broke down yesterday because I just couldn't keep it together and quite frankly I'm exhausted, I don't feel like eating and I'm tired of trying. What scares me the most is that this is not like me. I'm usually bubbly and vivacious.
Anyways, I told my boyfriend about how I was feeling and he told me I needed to buck up. He said there are plenty of people in this world who have it worse off than me and they still stay positive.
Is it really that easy? Somehow now I just feel worse for not being able to stay positive when I should be.

The thing I have learned is CRPS will break anyone down at one point or another. Anytime I have a med change I have noticed my pain increases just because of the change in meds. Each medicine changes our body's chemistry and brings some side effects that take time for our body's to get use too. No matter who you are, life throws us bad days. It is impossible for a person to be happy all the time. With that being said, the thing I try to focus on when I'm having debilitating pain days is not what I didn't get done but what I did do for that day. Small things are still progress, such as I was able to get the dishes done or made a trip to the store for some grocery's.
If you don't mind me asking: how long have you been battling CRPS? Reason being, the first 2 years that I had Been fighting this was the worse emotional trials I had every experienced and that says alot because during my child years I was rapped repeatly by 3 different people and that trama although severe was not as rough as the trials that the CRPS has thrown my way. The first 2 years I found more of a challenge because I was grieving the loss of my health and it takes time to find peace with the loss of health.
I find comfort in knowing that deep down I'm still the same person as I was before having this disease but instead of focusing on the loss of mobility I began.focusing on what I can do. I was able to find ways to do the activities that I love (water sports, skiing ect) but had to modify the way I approached those activities. Prior to my CRPS days I was an energized bunny that would spend 10 hours skiing on the double black diamonds and now post CRPs when I hit the slopes I can make one run (w/many breaks) but it gives me great joy that I can make it down once. I suppose I could feel depressed that I can't ski
like I use to but I focus on what I could do and it really gives me a sence of pride that I still try and it is such a rush just to know I didn't give up.
Take pride in what you can do and one thing I also struggled with was feeling guilty when I get stuck in bed for a couple days but it is a necessity to provide our body with rest in order to allow it to heal to bring the flare to
a stabilized level. Look at
Those days are nessecary to allow your body to heal and stabalize the pain.
Focus on what you are able to do and maybe it can give u the feeling of fulfillment.
Also, don't beat yourself up during a flare because no matter what disease a person is fighting, the body works extra hard to fight the pain and the extra pain makes your body work harder that results in loss of energy which requires extra rest (sleep).

Thanks Swatgen for sharing your experience with me. I've had RSD for almost 2.5 years. You are right in that I still have a hard time in focusing on what I have and not what I've lost. I worked so hard in high school and college hoping to have a great career and build a family and now that I can't do that I sometimes get caught up in it. I know I need to be patient and forgiving towards my body. I struggled with an eating disorder in my teens, and while that was really hard to overcome, crps is by far the hardest thing I've dealt with in my life. Just like you said about skiing and how there are 2 ways to look at it, I'm going to try to look at the glass half full instead of half empty. Thanks for your thoughts. It meant a lot to me and I really appreciate your advice.

No - its not that easy. Some days are wicked hard. But if you still feel this crappy after the weekend I would check with the doc that wrote you for the Keppra. Maybe its making things worse?

Do you have a psychologist that you talk to about your RSD and the pain? When things got to be too much for me I found someone that was experienced with chronic pain patients and she helped me quite a bit. I still see her occasionally. She taught me about "Mindfulness," a method of relaxation and stress reduction. There are a number of good books and links on the web with info on it. Mindfulness helped reduce my pain somewhat and made me feel a little bit better.

So sorry that you are having a tough time. The cold winters can be so challenging. I hate January and February in N.E., March isn't much better. Frequent walks with my dog and my friends keep me mobile and get my endorphins going, but my head is killing me....its just SOOO cold out there! I can totally understand where you are coming from. I am heading back to my bed myself for a nice nap....

When I first became sick I joined the RSDSA and they sent me some great info for family members of RSDers that I shared with my spouse. He still has it. It really helped him to understand what was happening to me and my body and why I didn't always feel good. Check out RSDSA.org.

Please take care and keep in touch, XOXOX Sandy

LFP,
These folks are right. I've had this ( and much more ) for 27 years.
I've lost almost everything.
Bad days? I start to worry after a bad week.

There is a 'Circle of RSD care'.

First your 'Expert Doc' and be sure you're not his 'first experiment'.
He'll prescribe your meds, but be aware, any doc will depend on you for reporting side effects. (Be VERY CAREFUL of Keppra!_ it cause me and many others to get 'ornery' for lack of a better word, and I'd take it out on the closest people to me)! I think they've added that to the wording in the papers that come with it.

Second,
Your mind, we ALL need to deal with a psych, who can help us deal with this huge change in life! Don't try to do it alone.

Third,
Excecise. This is a 'Use it or Lose it' disease! Use it! Before you can't!

Having this Bear half my life now, is teaching me wonderful things though. I enjoy people, I no longer think that I know best, as younger folks often do.(I'm not a younger folk anymore!) Keep your chin up, and feel 'special', that's OK. You are special.
And, as was said, someone, many someones, somewhere, have it FAR WORSE!

I never feel sorry for myself.
I just get in so much pain that I shut down and watch the tube.

Hope you're well!

Pete
asb

Thanks Pete and Sandy for that advice. Maybe I need to find a pain psych. I've been avoiding it because they are so expensive, but doing it on my own is getting harder. I'm also wondering if this new med, Keppra, is affecting my mood. I feel so detached, fuzzy and sleepy on this med. I see my neurologist this week and I'll talk to her about it.
Thanks for all your support! I appreciate it. I hope we all have better days ahead.

LFP,
You can think of a pain psych, as a temporary crutch. One that you can pick up again and again, once your first sessions are gone through. It's not something you may need forever.
I hope that relaxes you a bit. (the problem with psychs of course, is finding a good one, and then jumping the 'hurdle' to get comfy with that person).
I had one once, that I thought I was being her personal 'marriage counselor'!
One of Dr S's team, actually, and I told him! (She actually bitched to me, about her husband not cleaning the crumbs from the fresh bread, from their bread machine, and did worse. She flashed me!) Annoying to say the least!
She was judgemental, and annoying!
BE sure that you're comfortable with the psych! And, it'll go so much easier!

Best to you!

Pete

asb

IMHO and as a long term RSD/CRPS patient you need to surround yourself with supportive ppl, now I am an OLD married woman who has many other demons butthis young man REALLYneeds to learn what you suffer through each and every day. Reach out and find those who can help you, come here ask and learn. Let us help you!
:hug:z

Hi LFP,

Don't be so hard on yourself !

I think we all need a pitty party from time to time. For me, giving in to the sad feelings every now and then is what helps me put it in perspective and find happiness on other days.

With almost all situations out there, someone always has it worse. So what ? Doesn't mean the other person's situation doesn't also suck.

I think your boyfriend should give you a few days to wallow a bit. If you aren't hauling yourself up by the bootstraps then, then he should try to help you refocus or be on the lookout for serious depression.

Who am I to say....
 

Dear dear LFP,

My heart goes out to you..as we all have spent our time in the trenches and we all understand your despair and pain..It is a daily swing on the pendalum of our lives now .. AND it is no doubt aweful!!!! ..I must admit that even now, I feel somewhat 'unqualified' to visit this topic as lately, Iam trying to sift thru sadness in my life and my RSD is always there for the ride.. but I want to help you..My heart falls to the floor often..it is so normal for us who suffer with the this life altering, pain staking, rentless life with RSD.. I honestly think if we didn't experience the highs and lows of our emotions it would not be normal.. But this can't be about us..It's about how we live with our cards we've been dealt.. Fill your sad days with something that brings happiness to your heart..Such as a craft you may enjoy ie..painting, sewing or possibly doing something nice for someone else..Anything you can think of to ward off the sad to be replaced by warmth to fill your heart and mind..I know easier said than done but we have no other options.. Allow your self to 'feel' but also allow yourself to 'live' your new life..That is one of scared but strong... One of my favorite verses is... " Life is not about waiting for the storm to pass... Life is about learning to dance in the rain".. How true!!!..oh my, how true and I also want to say..I am very sorry for your pain and sadness.. We are blessed to have eachother here.. Continue to lean on us in order to bring a smile to your face...

Many hugz, Kathy:grouphug::grouphug: