As my condition continues to worsen, despite various treatments, I am experiencing more and more loss and grief. The biggest blow came when my sister, in an attempt to be supportive, reminded me that my nephew (the first and only one) would be walking soon and I would want to keep up, so I needed to do everything to get better. It hurts me to think that I will spend his entire childhood always a little removed from him so he doesn't hurt my leg. The second biggest blow came when this spread into my thigh, meaning I could no longer do throwing on the pottery wheel - a very meditative and soul touching activity for me. Some times the losses are small; sometimes they are big. But after 8 months of pain and 5 months of treatment, I am losing hope I will ever get them back.

I do have very wonderful moments. It's not all doom and gloom. And I can see the good in the little things. I am happy things aren't worse. But when these moments of grief hit me, they are so overwhelming and powerful. I don't know how to stop the flow of emotional pain. They seem to be becoming more frequent and less controllable. I'll break out in tears at the most random times. Did/ does anyone else experience this and how do you cope? Does it get better?

Hi maygin,
Love the name!
Unfortunately I don't have an answer that would be sufficient.
The only thing that was told to me is "it is what it is" and that's pretty much the way I except it.
I totally understand being in wheelchair.
There's plenty of times were I feel left out of things or I can't do the things with people/family that I used to or want to.
To make matters worse I lost the use of my left hand. I was trying to learn classical piano too.
I just except the fact that my accident could of been worse and count my blessings I'm still here.
So what I'm trying to say is "it is what it is".
Be well...

Don't try to control the emotions. Let them ALL out. All your deepest hopes and darkest fears and frustrations. Scream your face off if you have to. It's OK. Screw what anyone else thinks or says or does. This is about YOU. The only negative emotions are the ones we hold on to.

Maygin, imagine me throwing my arms around you and crying with you, 'k?

I was diagnosed with CRPS in the ball of my left foot a little over 3 years ago. I had no injury (since the majority of CRPS patients have an injury/surgery that starts this danged thing) and just woke up one morning with a sore lump in my foot. It raged from there. I definitely understand every stinking thing you just said. My oldest daughter got married last July, and people keep saying, "Aren't you excited to maybe be a grandma one day soon??" all giddy like. And to be honest, I'd LOVE that...but it terrifies me, as well. The CRPS has since spread to my right foot (same area) but not as badly, thank heavens, but walking is DEFINITELY a challenge. And 18 months ago, I was diagnosed with two forms of arthritis--RA *and* Ankylosing spondilitis (pelvis)--and between the CRPS and the arthritis, I walk like an old woman.

I'm 45. Up until the CRPS, I was a competitive tennis player. Traveled a bit in my region, playing tourneys. NOT BEING ACTIVE STINKS. And now I can't be bumped, hugged hard, sometimes even touched, and definitely can't do any of the active things I used to do, including going on walks with the fam.

Anyway, long story short, I struggle emotionally, too. Most people can clearly see I walk like a 90 year old. But they always say, "If we didn't see you struggle to walk, we'd never know you had anything wrong! You're always so cheerful!" And yeah, I've always been told I'm one of the most positive and cheerful people known to them. But so often, it's just a cover. I often cry in private.

So YES! It's a struggle. YOU ARE NOT ALONE. The thing I do and have learned (and I hope this helps you) is to find something you love and hold onto it with both freaking hands. I adore reading. It is my best friend. I love immersing myself in other worlds and with characters. I write, too (4 romantic/suspense books published), and that brings me so much comfort.

Find what you're good at, and can still do, and latch onto it. Movies? Comedy? (Laughter truly is the best medicine!) A good set of friends to laugh with who understand and keep you grounded? A trauma/rehab group? Swimming? (ALWAYS a great thing with CRPS) Getting out to a fav place regularly? (Barnes & Noble? Library? Starbucks? Park/greenbelt?) Find something that helps you remember there are still awesome things to do in this life. Holy cow, that can be hard, when your disability is slugging you in the face from morning to night. But I have learned that sitting around moping totally makes things worse.

Also, LET YOURSELF FEEL CRAPPY SOMETIMES. Often I spend so much energy fighting feeling crappy that it makes things worse. On a down day, allow yourself to wrap up in a blanket on the couch, watch something FUNNY on TV, and know that tomorrow will be better. (I've never had that be wrong.)

And as hard as it is, put your foot down (not literally. Ouch. ) about things you know will hurt--being around a bunch of preschoolers who will bump and ram you. (I was a preschool ed major and had my own preschool for years, so I love the little guys, but I know now they're painful.) When you're around kids, brace yourself and know that there are just some things you're not gonig to be able to do around them.

As pathetic as it sounds, I always let my hubby and kids (I still have 4 at home) serve themselves first at dinner and I stay out of the way so I don't get bumped and stepped on.

I'm saying this because even though my hubby doesn't understand (and sometimes gripes about what I can't do) I need to be strong and stick up for myself about what I can and can't do. Do the same thing with your nephew's mama...just be firm about what you're going to/not going to be able to do. Often, people will not understand. I have gotten this a lot over the years. Those people who don't, you just have to be strong and shrug off and try not to let their attitudes hurt you.

Following these "rules" for yourself go a long way to making this nasty disability easier to handle, and will help you be more cheerful overall, I think. At least it does for me.

Hugs, Maygin! Know that we get it. Hang in there. Try these "cheer up" things I talk about. Now, I'm going to go read a good book...

Hi Maygin,

It pretty much just sucks sometimes I admit. A couple of things have been instrumental in my dealing with the losses. I was fortunate to find a really great pain therapist who was a good fit for me and helped tremendously with the grief and trauma. She did EMDR and hypnosis which were good for me since I could talk all day not get anywhere. Psychology Today keeps a database of therapists, I just looked for people who did pain, chronic illness.

I too am a creative type, used to schlepping cameras to the most difficult to access place I can find and taking photos and also standing at an easel and painting for hours. Not going to be doing that anytime soon. Find another creative outlet, modify what you love into something do-able or take up something new. I got a bunch of mini panels that I can paint sitting on the floor.
You cannot neglect that part of yourself. You are still a symphony, not just this disease.

I try to take a really long view on recovery. I figure if it takes one, two or even five years then that is at least something to work towards. Ignore the feeling that you aren't getting anywhere. Minimizing loss is actually a gain as far as rehab. I thought I got nowhere and had bad atrophy for many months but I guess the exercises I refused to stop doing at least kept the muscles from shrinking even more. Eventually they woke up, still smaller and weaker but making some progress.

Something my son said to me also helped. He is 13 and I am used to being superMom. I was telling him one day how sorry I was that I couldn't be more for him, that I wasn't like I used to be. I started tearing up and as the first rolled down my cheek he looked at me like I have probably looked at him sometimes and said "stop crying Mom, What are going to do give up?" That shook me up and I got even more stubborn after that. I am not giving up or the kid's gonna think I'm a quitter. Can't have that. Cry when you need to but don't get bogged down in it. That is a place to visit not to live. Find someone to help you get past things, I am really glad I did and only wish I'd done it sooner!

Sending lots of Healing Love,
Littlepaw

An experienced pain psych doc is invaluable IMO!

Thank you all so very much, from the very bottom of my heart. I very much needed all of your kind and supportive words. For once, I don't feel alone.

Russell - Thank you for the compliment on my screen name. It was the nickname my friends gave me when I was younger and it always made me feel a little extra loved. You are so right; it is what it is. I have been working on "going with the flow" with this condition. I was trying so hard to fight it, control it, and stop it, but it wasn't working and only draining my energy. Thank you for your support. It means a lot to me.

Visioniosiv - thank you for the permission to feel what I feel. I often judge myself and criticize myself for even having the emotion, let alone expressing it. Maybe, what I need to do right now is cry, quite often, until there are no more tears. Then, I can start rebuilding. As always, your words have a powerful impact on me. Thank you. I almost PMed you, but I didn't quite know what to say. I'm so glad you responded.

AliM - Thank you so much for sharing your story. I really appreciate your openness. It's interesting - my pain started in the ball of my right foot below the 2nd and 3rd metatarsal and on the top of my foot above those bones as well, with no injury. I was told it was a strained tendon and that it would go away. Well, it was really hard to walk properly when I couldn't roll off the ball of my foot, so I ended up twisting it weird and fracturing the 2nd metatarsal. Everyone points to that as the day of injury, but I was in incredible pain weeks before that. Now, mind you the pain was not as bad as it got after the break, but for all I know, I could have had CRPS in the beginning and the fracture just caused a horrendous flare. Who knows? Anyway, I wanted to share that we have a slightly similar story, which makes me feel a little less crazy I also love reading and have done much more of it since the injury. I've always wanted to write, but I don't have a story in me. I start, but then the story goes no where. Maybe one day I will find my story. I have been so afraid to grab onto the other things I love because I'm terrified I will lose them too. But you are right - I just have to try. Just before I read these posts, I posted a Facebook status offering handmade cat toys to my friends. It caused me so much anxiety - making a promise I might not be able to keep, having my friends judge my new hobby, etc. - but your post reminded me that I have to do the other things I love. Needle felting was a hobby I took up just before I was injured and I can still do it. But I haven't lately out of fear. You have inspired me to keep at it, even if I'm really slow at it on the bad pain days. Thank you so very much for your support.

Littlepaw - I have apologized to my dog so many times for failing her, crying the whole time. It hurts to not be able to give those you love what they want. But you have the right attitude - to keep at it. I want to be able to take my pup on long hikes again. Even though I am frustrated with my progress, my physical therapist tells me I am making progress and she thinks I will one day be able to do that again. I have had a hard time believing that lately. My physical therapist encouraged me to visualize doing all the old things I used to do, like the long walks with my pup. I'm usually so good at following through on "doctor's orders," but this one has been so hard because I don't see it. I see a young woman walking with a cane, in incredible pain, trying hard to not take it out on her pup. But I need to fight for that vision to come back and then for it to be a reality. I have been fighting my disease, yelling at my leg, and disowning it, and that's not where I need to be fighting. I need to work with my body to fight to get back to the things I love - or at least a modified version of them. Thank you so very much for sharing. You are a wonderful person and I enjoy your posts whenever I come across them.

LIT LOVE - I had a pain therapist at the rehabilitation hospital I go for my treatments. Unfortunately, we weren't a good fit and she wanted me to rehash old issues that I dealt with in therapy long ago. I have a new pain therapist now that I really like, but we haven't had too many sessions together. But I think it is helping. She has created a safe space for me to feel whatever I feel in there and not have to hide it to protect her, as I tend to do with everyone around me. I believe that has allowed these emotions to flow. Which, while annoying at times, is probably healthy and healing. It feels a little like I am grieving an older version of me, but I'm also really excited about who the new me is going to be. I think a lot of the things I wanted to change about myself but hadn't been able to yet are changing now. Nothing like increasingly losing more of your body to pain to put things in perspective. I'm also scheduled to see a psychiatrist on the 20th to discuss medication. I have always avoided taking any medications for mental health issues, but this time, I am considering it. My anxiety is really consuming and I may need a little help. Thank you for your support and suggestion.

Thank you all for your posts. I am inspired now to take the risk and attend the art class I really want to go to. But it requires a train ride and I've never taken the train. I worry about it flaring me up since right now the buses and the potholes are causing problems for me. But this is a rare opportunity to learn a new art technique from my favorite artist. It is more money then I would normally spend on myself, but I only have this one life. In 5 years, I might wake up and not be able to use my arms. I don't want to regret that I didn't spend some time creating beauty with fiber just because I was scared of a train ride and spending a little money. I woke up on Saturday and deeply regretted not spending more time on the potter's wheel. I don't feel like I used my "healthy" time well. I want this new life to be different. I want to be able to say that I lived. But first, I have to go through this grieving. Thank you all so very much. These posts have helped tremendously.

Depression is a component of RSD/CRPS, so adding in something to deal with that should be considered.

Maygin,

I am so glad that you are getting some support. The changes are hard and it is natural to feel sad. I am sure we have all cried oceans. The sadness will ease. You don't know yet where you will end up that's why you have to keep at it no matter what. Taking a class sounds great, just don't pressure yourself. If it's too much on a certain day try to not get down on yourself. Give your body permission to get what it needs for healing. I too disliked my foot and ankle for a while. I really started resenting it and even felt I might be better off without it. Then it occurred to me that I was never going to be able to heal if I carried those kinds of feelings about any part of myself. Save that energy for recovery. Own that leg, love on it, give nice massages to it with lotion and tell it is going to get better. Tell yourself it is going to get better. You are taking all the right steps. Remember this isn't a contest, it's okay if PT progress is slow. You are making some and that's all that matters. You will progress at the rate your body can handle. That might just mean the tiniest increments but eventually they will add up. If you need med support right now for depression that's okay too. God knows this is a bear to deal with. Meds can help the therapy work more efficiently and get you where you want to be to fight this thing. Hang in there Maygin we are all rooting for you.

Sending Healing Love, Littlepaw

Welcome....all I can do is repeat; it is what it is; be grateful for what it's isn't/scream when you half to...laugh when you can....