Hopelessness

I'm so very sorry, I know how you feel all too well. I've had CRPS almost 5 years. Its exhausting, frustrating, and knowing everyday will be nothing but pain is so overwhelming. I've seen many different pain management Drs. treatment after treatment that didn't work, I finally found one who decided not to keep putting me through torture. All we can do is be our own advocates and fight to find the help we need. Unfortunately no matter how much you try to educate others, which gets annoying, noone truly gets it. You don't understand it until you get it. I've lost friends but gained many new friends online that also suffer from CRPS and those new friends are amazing. As much as I'd like to just give up i push myself every day. This disease is total bulls**t and I refuse to let it take all of me. I'll keep walking until my legs finally give out.

I have not been on the boards in a long time.  Gary made me want to jump on though as I get e-mail notifications and I remember feeling just like him a few weeks ago.  I go through cycles of up and down with my moods.  Sometimes I am just crushed and other times I just keep one foot in front of the other reminding myself that s**t happens.  Terrible terrible s**t, but what is done is done.  I have to keep going.  My family too seems very uncaring or desensitized about my crps.  Can you blame them though?  They see me in pain, cannot do a damn thing about it, so they try and just 'ignore' (per say) and treat me like normal.  I do not get the extra concerned looks or phone calls asking how my day is.  crps is just old news.  I am glad in a way because I do not want my family suffering along with me.  My boyfriend on the other hand deals with it all day in and out.  It is dramatic for him as he is helping me do things like getting dressed, extra chores, and helping me stand.  Figured that would happen in 50 years into our relationship, not 2.  He is good about it though.  He also 'ignores' the crps for the most part.  Honestly, I am relieved because being asked how can I help or are you okay was getting a bit old.  Especially when the answer is....I am in agony and there is nothing you can do.   Just makes them feel worse.  Makes me feel worse.

Gary, I am sorry it is kicking your ass so hard.  I try very hard to keep things in a positive light.  It is so easy for me, someone who has had depression near their entire life, to just grumble and tuck myself under the covers and cry.  I just have to push.  I cannot let crps win and control what life I have left.  Crps can win some days, but I am going to keep most the year for me.

Hello Gary, and all!

I've been away for a bit, as I've been incidentally diagnosed with a brain aneurysm... Going today for a CT-A of the brain so we can figure out a battle plan.

I so feel you, when you say that one day is much like all the rest, all melding into one big panorama of pain, inability to do much of anything but just survive, and that bleak sensation you get when you realize your loved ones have just become numb to your suffering as a result of the CRPS situation going on for so long.

Reminds me of when we kept laying ducks here at home: The hatchery had sent us a 25th day-old duckling that was small and weak compared to her "sisters". They didn't charge us for her...I figure the packer felt sorry for her, and rather than put her down or let her die in a box in the corner of the warehouse, he/she shipped her to us so that maybe, somehow, she would have a chance at some kind of life, however short.

She actually started to perk up, but we had to fence her off from the rest of the ducklings in her own little chicken wire enclosure, or the others would have taken her food and water, and stepped all over her in the course of doing business as usual. She always moved slower, and never got as big as the other ducks, but she held her own, got integrated with the flock at age 6 weeks, and didn't start to languish again until the weather turned cool in the fall. Then her voice got breathy and weak, and all she could do was rest off to the side of the duck run. The bossier ducks started going over and trying to make her stand, and walk: Two of them would grab her gently by the neck, one on each side, to raise her up, but she just collapsed into a sit as soon as they let go. After a few days, they gave up on her and went about their business as a flock as if she was invisible. Yet she still got comfort from being close to her flock mates. One day, she just passed away quietly, still sitting near her mates under our old apple tree.

I cried. I don't usually cry over deaths, as I'm a hospice nurse and farm kid who has seen literally hundreds of critter and human deaths in my lifetime. But this one hit close to home... I didn't realize that I'd been trying, underneath it all, to sort through what exactly my place is in the family, as well as the community and world at large: On its face CRPS takes away so much from not just the patient but everyone around them. Things you took for granted, and your family took for granted, are now impossible or changed almost beyond recognition. It's easy to feel as if life is passing you by, you are now redundant or downright invisible, as if you have died but are strangely still present, observing the world get on but without you in it. 

It shakes you to your very core, makes you question whether there's any meaning to any of it anymore. And at a time when your energy levels and your pain are sapping your ability to cope.

As hard as it may seem, we have to find a way to put meaning back in our days. It's going to be different for all of us, as we each have some unique challenges, but it's the only way forward for us, and for those we love.

Ask yourself: If I didn't have CRPS, what would I do to be a better person, to help others, to make the world a better place? And once you know the answers to these questions, find a way to do even just a tiny bit of whatever it is you believe is the way forward to a better life for you and those around you. It may just be vowing not to speak critically to others, but instead to be compassionate always. This takes little physical energy, but over time, will move mountains. It may be growing extra tomatoes in a raised bed (if you're not so good at standing up for long) and giving them away to neighbors with big families, or elders who can't garden at all, etc..

The possibilities are endless.

On a side note, I started taking dextromethorphan with guaifenesin about a month ago; if that sounds familiar, it's because it's an over the counter cough and cold medicine, cheap as dirt. Dextromethorphan is an NMDA receptor antagonist, like ketamine, though not as efficient in its action as ketamine. But if for whatever reason IV ketamine is not possible for you, it may be worth giving a try. It helps with pain and panic management, as near as I can tell. I don't think that it is ever going to be anybody's main pain relief strategy, but it is a great adjunct in small doses. There are some studies in the medical literature about this, if you're interested; seems to help manage hypertension, too. The trade off seems to be a little extra fatigue and dizziness, but after the first week, totally manageable. Check in with your doctor, just in case.

Thinking of you guys. Hoping for better days to come, in the very near future.

Onward and upward.

Hi Gary. Sorry you having such a terrible time. All i can say just take it day by day. I know when the pain is so bad every second can feel like a day(sorry not really inspiring u . I'm sure your family cares. They probably also feel helpless. As you know it is hard for others to understand unless they have gone through it. It is also hard to see a loved one in pain. You know your emotions can increase your pain. I know thats true in my case. If the pain meds make you a zombie maybe u need a different med. U should be on time released and also have separate pills for breakthrough pain. I think u should see a therapist to help you right now. I saw one the first few years after i was diagnosed. I never thought i would have any good days. I use to have nothing but horrendous days where i didnt care if i lived or died. Here it is 19 years later and i can tell u it does get better. U have to keep moving that is the key. No matter how hard it is, keep moving.

Hope u are feeling better. Take care.