I definitely know what you are talking about! I go through much much pain everyday, 24/7 unless I am sleeping and can actually get/stay to sleep. My wife is starting to get frustrated because she can't hug me or I can't get up to do favors for her, such as get her a glass of milk, help her around the house, etc. It makes me feel less of a man bc i cant do the manly things around the house. Luckily her 19 year old brother lives with us and doesn't mind doing them bc he knows and sees how I feel.I am too still TTRYING to work, but like you, am running out of paid time off.
I am still getting some scans run my brain and neck, to rule out ms and other things on top of crps. I have been chatting with a Facebooker who also has crps and has been dealing with for over 8 years. Hers hasn't spread yet luckily, but it's nice to chat with someone who knows about it. If you ever need to chat, don't hesitate to let me know. Can either text, pm, or chat on Facebook. We will both figure something out soon!!!

Dearest Maygin, things are not fine. Of course they aren't. What you are going through is hard and exhausting. It takes a lot of energy dealing with the basics of every day. Don't waste energy pretending and trying to hold it all in. If you need to cry everyday for a while then do, but don't get stuck and mired in it. Focus on the many little things that you do to make yourself well, they add up over time. I felt like I was making so little progress for a long time but I figured I was at least minimizing more loss with everything I did that was therapeutic. Even the most minimal things you can do benefit you.

You are not putting on a brave face. You ARE brave. We all are. It takes tremendous courage to do this. I Don't remember if you were going to a therapist or pursuing it but I found it so helpful, both with dealing with loss and transition and with some ways to cope with pain. Just having a place to take some of the grief was a blessing and made things easier. The losses are real, I won't minimize them but moving through them can be easier with help. And yes, they will come in waves and things will hit you again out of the blue but the sadness does lighten. I underestimated how valuable therapy would be and delayed going. silly me!

I am so sorry about your work stresses. I hope that the time off issue gets resolved. I do know that somehow you will find a way and get your treatments. Hopefully the sooner the better. Does your work have a time off pool? If I were your co-worker I would gladly donate a day off

You are never isolated. We are here....Sending Healing Love,
Littlepaw

Enna70,

Thank you so much for your kind words. I really needed to hear them. It's hard for me to say out loud that this is really. I feel like I must be crazy or that this is a nightmare I will wake up from. Thank you for addressing that issue. These were exactly the words I needed to hear.

krmirdfrog,

Thank you so much for this post. I in some ways feel blessed that I don't live with anyone and my family is far away so they don't have to see how much I would let them down and need their help instead of helping (I was always the one who helped with things whenever possible). But on the other hand, it means that I'm doing this alone and that makes it really hard. I'm so sorry you are going through this. I feel like less of a person overall because of this condition. I'm definitely not a productive member of society anymore. Yeah, I've been through many doctors to rule out other things and now pain management wants me to go see one to 2 more to rule out other things. It's exhausting dealing with this disease. I will reach out here one day soon

Thank you Littlepaw. As always, you show so much compassion, kindness, and support. I am blessed that you responded.

Thank you so much for the advice of not pretending. I'm not even sure who I'm pretending for. I live alone and am currently teleworking, so I guess I'm pretending for me. There are days where this just feels like too much and I don't know how I'm going to make it through the day, so I just pretend that it will be fine. I pretend I'm okay. Because right now, all I want to do is sleep and take care of my health and not worry about taking care of a pup or going to work. I just want to heal my soul, so at least this isn't so hard and empty. I really need to stop pretending and honestly, I don't think I can this week. I have hardly slept and when I do, I don't get the deep sleep I need. I think going up on nortriptilyne is the reason, but who knows.

Thank you for reminding me that the little things add up over time. It's impossible to know exactly what the benefits were. Did the things I do to take care of myself hold off the spread for awhile? Are they preventing something else from happening? Who knows. I just know that I have more good days than bad days when I do the little things and I needed to be reminded to keep them up. They are exhausting, but worth it.

I don't feel brave, but I appreciate you saying so. I am seeing a therapist. I have been since December. I'm also seeing a peer support specialist (a volunteer who listens to me talk). Having both outlets has been really helpful. I need to talk about how hard this is in a space where it doesn't break their heart, like it does when I talk to family. But it's also hard for me to open up and really be me with anyone, let alone a stranger. I switched therapists in March (there was overlap between the two in February) and sometimes I'm not sure that I feel any more safe with the new therapist than I did with the old one. I need to spend some time reflecting on how I'm using my time in therapy, because I'm not really talking about the things that hurt the most in it. Thanks for making me more aware of that.

Thanks for saying you would donate sick time. That's so sweet. We don't have a pool and my boss looked into other options, but there are none until another job opens up here soon. Within the next 3 months, I'll know if I have more paid time off, and if I do, I should be able to take a little time to just not work and deal with my recovery, so I can come back to work with better resources. Right now, I feel like all I'm doing is triage. I need to get me to stable before I try working.

Thank you for being here and making me feel less alone.

I was diagnosed w/RSD in 92' and full body in 04'. I was very fortunate to find an RSD specialist and he saved my life. I had been bedridden for almost 6 mos before meeting him. It took him almost a month of a very high powered medical treatment of TP shots,epidurals, and around 58 pills a day. But he got me up and functioning again. He devised

a pain management plan of diet and medication that allowed me to enjoy my life. Unfortunately he became I'll and had to retire. He had trained an associate to take over and everything was good until this year. This Dr. gave us 90 days notice that he was closing his practice and moving across the country to join a different field of medicine!
Now I fear that my life is failing!
I cannot find a Dr that will even discuss the medications that my medical records prove have worked for over 18 years. I have been to the ER 4 times in extreme pain,high BP, and have been on the verge of stroking. The ER gives you morphine liberally to get the pain under control but that is it! Your on your own when you leave.
It is not only my life but my family that is being destroyed by the ignorance of some Dr that will not have an open mind and research something that out of their "norm".
My husband is recovering from having rods put in his back and cadaver bones in his neck. June 10 he is scheduled to have his left hip replaced then once mobile they will be replacing his right knee. He needs me for everything right now. Also that leaves me to do his chores as well. Taking out the trash,feeding the animals, the yard,etc... Also I have a 7 yr. and a 9 yr. grandchildren that we are raising. I am in fear that we will lose our grandchildren as it is becoming more and more difficult for me to properly care for them.
And if this wasn't enough the last time I was in the ER they found that my gallbladder is full of 5/7 mm stones!

I got a referral to a " pain clinic" this Dr will not even discuss my previous Drs pain management. She is only giving a 10th of a similar medication. I went from 300 .03mg amps of Buprenex to a Butrane patch 10 mcg/
hour. So far I have lost over 63 lbs in 3 months, my arms and legs have started extreme atrophy because I am not able to be as active. My migraine are back,the burning and tearing sensations in the legs are back, extremely sensitive to any temp change. I have spent the last 2 days bundled up w/heater on me because it feels like someone is pouring ice water down my spine and the least breeze send me to the floor in a chilling seizure .

I truly don't know how much longer I can endure this. Or what is going to become of my family!

You are very much not alone I can guarantee you that. Take your time in reaching out to whoever you choose to. You will know when to talk about it when time is right. And when you do, just know we are here. It feels good to have a support group like this bc everyone understand ls and is so comforting. May your tests turn out positive, and not as many more to come. Hopefully, my last few will be within the next month. July will be my one year mark of tests.