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:

Thank you all so much!
 

I just wanted to say thank you to everyone who has given me advice and supported me. It's funny how even without knowing you face to face the advice and words of encouragement you have each given me really help make me feel like I'm not alone. I had a couple hours last night where the cloud in my head cleared and the pain decreased; it was just nice to feel more like myself again even if it was for a short time. I love the quote Kathy. Unfortunately, I have not yet mastered the art of dancing in the rain, but I'm working on it. Once I do, at least I'll know we'll all be dancing together:)

remember this:

Rsd will ruin your life.......if you let it.

Whatever is causing my pain causes a sense of pessimism at the same time. I'll go for a long time feeling one or the other a moment earlier.

But over the years it's not always just pessimism but can be depression or a sort of capitulation. It's part and parcel of the course for me. If I can avoid the pain I can avoid the pessimism and most of the other nasties that come with the pain.

So sorry to hear about everything you are going through right now, Lovefamilypets!:hug:

I have RSD in my left leg, both arms and possibly back though this isn't confirmed yet as I also have major back issues going on at the moment. I've had RSD since I was 12 years old and am approaching 16 in a couple of weeks.

Like with your situation, I often get family members telling me that I just need to 'do more' and that i'd feel better if I did. Easy for them to say but they don't see the flare I am in for days, sometimes weeks after I have had a busy day!:rolleyes:

My Neurologist wanted to put me on Keppra a few months ago but I was told not to go on it as it could make me really depressed etc. I have been going through a depressive stage lately as I got told by my Doctor that there is nothing else he can do, things probably wouldn't get any better and may get worse. It was a really difficult time. I already suspected it but I guess it's harder actually hearing it come out of a proffesionals mouth. :rolleyes: I'm still really depressed now but not as bad as I had been. At one stage I was contemplating suicide as it all got too much and actually took my medication (mum had to get me urgent help for that).

I do have a boyfriend and most of the time he has been SO supportive. He has mild Cerebal Palsy so I think that helps him understand things easier, plus he has seen a lot of what I have to deal with firsthand on a daily basis during the year we have been together. At New Year, we did have an argument as he said the same as your boyfriend - that I should push through the pain and others have it far worse. I think it all got too much for him; he was having to support me mood wise and physically and it was a huge challange. We actually split up for 2 weeks because of it but are back together now and has been much more supportive. He's been attending my hospital appointments so I think that has helped - maybe that might be something to look into for your boyfriend too if he doesn't already??

I agree with what the others have said though, it isn't that easy to just get about day to day life like a 'normal' person. We have to be a lot more careful, trying to prevent flares etc. Some days I just want to snuggle up in bed, with an hot chocolate and watch a bit of television. I don't want to see anyone else or do anything. People don't tend to realise that I need time and space though I am hoping they will understand more one day ... to be honest, I don't think anyone would fully understand unless they have RSD themselves though.

I do hope things start looking up for you and your boyfriend. Perhaps print some info about RSD off the internet - never know it might work and is worth a shot if nothing else! :)

Take care of yourself and i'm here if you ever want to talk!

Alison

Lovefamilypets, I have generalized RSD and i know what u r saying. Its taken me a few years of therapy to realize we do our best. We r aloud to have bad days or days that we dont want to push ourselves and that's ok. I have found the hardest thing was, like you, knowing what i should be doing but at times not having the strength to do it. A lot of fear and anxiety later, i realized the one thing about my RSD is that the pain intensity and area changes and that even though i might feel like crap at this moment i know things may change in the next hour but until then its alright to take it easy. I do find it important to know when i can do something to do it because, i like your boyfriend, know that there are others suffering as much or more-yet we cant compare ourself to anyone but ourself. I remember crying feeling so helpless and embarrassed at how slow i was walking and my daughter said, "dont compare yourself- ask yourself, do they have RSD? Then they dont know what its like" It really helped me at moment. Now when if i feel that way i think to myself-it is the RSD stopping me, not me. momof4

I am so embarassed by how slow I walk, but I don't anywhere but church and the dr now so it cuts down on that stress inducer. But like tonight we went to our grandsons' bb games and had to leave early because of my pain, I had to manuver the bleachers and walk the gym looking like I have my ankles tied together. And I'm wobbly on bleachers, but I'll always be wobbly on bleachers and there won't always be bb games that my grandsons are playing in. I'll pay tomorrow but it is worth it. And you are right, it is the RSD, because I try to walk faster and it doesn't work.

And it isn't always that my pain is only a 3, or a 4 or a 5 some days. It is that it never goes away. Sometimes that alone beats you down low. So I try to do my best for that day.

grateful to be alive,
pat e

I don't want to oversimplify. But one thing I'd like to add, is that when I feel 'down', I find that 'looking for help' from a friend, often brings them down as well.

So, I also find that just calling someone, and helping them, even if they're not down, if you just call and tell a joke, anything to raise the bar of both of us, after that call or interaction, makes them feel better, makes me feel better! It gets me out of that negative moment, and ends the 'worry cycle'. And, isn't that what makes life worth living?

pete

asb

Hi Alison,
My heart really goes out to you as I know yours went out to me. I was first diagnosed with RSD at 19 and was fortunate enough to go into full remission for several years. At that time, I had doctors telling me I would never get better and I also had doctors who simply refused to treat me since they said they had nothing to offer me. It is devastating to hear that as a patient, but I just want you to know that I defied the odds at that time and I believe you will too!
Like you said, sometimes I don't think it is possible for anyone to truly understand what we go through unless they too have been through RSD. It has been challenging for me to try to stay connected with people, but at the same time also a blessing to have people who want to try to support me even without fully understanding RSD. I'm glad you and your bf have worked things out. I too have those days where I just need some space. Thank you so much for sharing your story with me and supporting me. I hope I can do the same for you!
Nicole

Dear LFP,
Truly, the only thing that lasts and serves us from the heart is our relationships. It is difficult but I need to remember that investing in my husband, my children, my grandchildren now has a higher cost. But I am willing to pay that cost most of the time.

Today, I had to drive 55 miles one way to sit with a sick grandson and a healthy one while my daughter went to class. At some point during the day, Elijah, who just turned 5 last week loudly expressed this sentiment. "Grame, this has been the best day of my life!" I don't care how many pills I have to take tonight, tomorrow or the next day. I can replay that line over and over and it brings the same response as the first time. In fact he restated it later on in the afternoon. And when it was time for me to go, he grabbed my legs and said "Please call Grampe and ask him if you can stay overnight." I said I needed my medicine. His response, 'It's ok we have pills here and if you go I will miss you.'

Be true to those who are true to you. Don't wear them out, but be the kind of friend you would want them to be. Love covers a multitude of offenses.

I have a day this week that will be remembered not for what I didn't do, or for how much my pain level was, but because "It was the best day of Elijah's life because he spent it with me."

The challenge of connecting to those who truly love you is far outweighed by the return you get in comfort, entertainment, distraction and love.

pat e

Amen GramE!
Giving love, is the best way to get it back! Love, is like a mirror the more you give, the more you get in return! Thanks!

(not always true with boy/girl friends, but that's only vanity.)
Go on, let your heart go free!

Pete
asb

Oh gramE, I got a big smile and the warm fuzzies on that story.

Tell Elijah that he gave me some relief too !

some days its harder then others
 

somedays its harder then others, some days the day just sucks while other days the sunshines and we sing a little tune, but we are only human and some days takes effort just to get to the next day- or hour, but with friends i see on here with positivie attitudes the day may be less of an effort and bring a smile to your face just when you think you cant go on, and its true each of us cant really know how it feel to have another desease but we know how if feels to have the one we got selected to carry, i have mg 37 yrs and hubby 3 yrs rsd and no way do i know how he truly hurts inside all i can do is help him the best way i can with support rsd is a harsh thing to have to go thru i give you all with rsd a standing ovation with dealing day to day but remember the day you sang that tune and the sunshined on you lots of days ahead of you to sing that tune lalalalala , :D linda