Hello all,

I have had crps since 2003 from hit and run auto accident. I have been able to "manage" the pain and work full time until this most recent work related event in March. I use the term "manage" Very loosely, as more often than not I fell into bed in terrible pain when I finally returned home. My job required travel and managing team of research professionals. I basically lived a lie and kept my worsening disease a secret from coworkers and family. My husband of course knew to the extent that I allowed him to, which was very difficult and I did my crying at night after everyone was safely sleeping.

I feel like my world is shrinking, in that I am either in bed or pacing in my room, as this pain spreads to whole body. I am seeing three MDs, two pain specialists and my primary care with whom I have worked with for many years. I have three stellate blocks scheduled in December, as this is recommended by workers comp and pain docs, to perhaps give me some relief for left arm original site of crps. They are also suggesting spinal cord stimulator, which I respectfully have declined due to all the problems this device has had. So they have suggested the new Stimwave stimulator injected via needle and has external battery, if memory serves. There is not much out there on this relatively new medical device so digging up information has been difficult.

I thank you all for sharing on this site, as you have become a trusted life line for me as my world shrinks and my depression and anxiety increases. I am using every ounce of my being to deal with the pain and other symptoms of this disease.

Take care

I am so sorry. I feel for you and while I cant relate to the level of pain you describe (I have been suffering w/peripheral neuropathy), I can relate to the feeling of hopelessness and isolation. I pray that you can find strength to persevere because beyond those low moments, there will be moments to smile and enjoy the life around you. Very easy to lose that perspective when you are suffering so much. Will be praying for you

My Goodness. Thank you so much for posting this. I can relate. I think that this is one of the most difficult parts of this disease--A Shrinking World. First it's the pain, then it's the loss of cognitive functions like focusing on tasks, loss of concentration on that which we desire to accomplish, loss of the ability to plan etc, and then the pain spreads again, then it's the loss of memory, then it's weakness... and on and on and on... Our world and what we can now no longer do just keeps on shrinking our interaction with our part in the world around us. And along with that comes the loss of our doing activities with other people too.

My doctor has told me many times, saying, "Try to keep connected with people and keep as active as you can." I agree with that, but, my my.. some days, it is just so flipping hard that all I can muster up energy for that day is to go to the restroom, the fridge, and hide my head under the pillow, because I hurt so badly!!!


I commend you for hanging in there at work. I hung in there as long as I could too, until I was just failing way too much. Way to go! I have a lot of respect for you for still doing it!

Amen to your post! Thank you for posting it. it is so true. CRPS is the Disease of the Shrinking World! Thanks again!

I am so sorry to hear about your struggles & pain. It is never easy watching your world get smaller & smaller.
I've been dx w/full body RSD since 1997 & can sadly relate to what you are going thru. I went the other direction in trying to let others know exactly what I had including what my limitations were. I felt if I educated them (including various doctors) of what RSD is & what my body was going thru then on my really bad days I would get the much needed support....boy was I ever wrong! My flareups would get so bad that I couldn't wear clothes, so going outside the house for any reason was out of the question. I had to be honest with my husband & three kids but most of all I had to be honest with myself & it wasn't easy.
I had to quit letting the doctors try to use me as their "guinea pig"/new & improved methods for every time it made me worse. I fired many drs for being too pushy in wanting to put anything in my body with a high possibility of causing any infections or pain. 'My body is going thru enough turmoil why would i want to risk further complications?' Always got met with, "I didn't think about that" or "you've got a good point"
My husband has a brain tumor w/seizure disorder + our 3 kids were younger with no family even in the same state as us, which didn't leave me with very many options for outside help. I was forced to look into alternative therapies, meds, etc in order for me to function daily. I had them help me not only in massaging oil into my back, grocery shopping, cooking, & yes at times getting out of bed but also in finding alternative treatments. We've spent many hours collecting plants, berries, glacial silt (healing mud) or just at the beach, which all four of them said they felt part of trying to get me better instead of knowing I was suffering and not helping. I'm not saying I wasn't in pain, for many times we had to cut the outing short cuz I was too bad off, so back home we would do puzzles to get my mind off the pain.

I'm not sure if I've helped you in some way or not, for everything is running together & lack of sleep is I'm sure very evident, but I did want you to know I feel what you are going thru...been there done that & this is so overrated!

You are not alone in this, for the internet has helped connect CRPS patients to enlarge their world & give you the much needed support you deserve. If I can help you please don't hesitate to contact me.

Gentle hugs

Hi Rain Shower,

Welcome to NeuroTalk.

Wow. I am sorry for all you have been enduring.

I understand either approach: Keeping pain to ourselves and sharing details.

I had started out keeping much to myself. I did not want to overwhelm anyone. In time, I had found I was better off sharing more. Once I had started sharing, I then found out who had the capacity to listen and who did not. When I realized more fully that most in my family of origin cannot listen, I knew where I had gotten the idea that it was best for me to be silent.

My husband and friends are different though, they can listen and they can be there for me. I have always been there for them, as well. I also have a very supportive aunt. Thankfully.

This is a very supportive "family" here. I am glad you are here with us and am also glad to see AlaskanLady join in, as well.

Many here have gone through so much, they have learned all about pain and compassion, the importance of loving kindness.

I am also so impressed by the moderators/admin here, as they have each spent years supporting many hurting people. They have been here for countless people, trying to help in one way or another, without fail, for many years. All angels.

I, personally, feel you are very wise to use caution with the SCS. We all hope the newest technology will be the best and will be helpful. Yet, the reports/stats won't be in until the newest technology has been in use for awhile.

I am glad you find this forum helpful.
I often visit the whole board when in pain, as it can provide a distraction for me. There are times when I am in more pain and cannot use my computer at all. (I had noticed I was here last night, writing, while gritting my teeth from the pain in my feet. I guess I felt it helpful to be here with some distraction.)

Sometimes, I find the "social chat" and other areas on this board very helpful. Someone will start a music thread, tell a joke, share a movie, share photos of nature, share artwork, share about pets, word games, etc. I find this very helpful at times. It's a distraction and I am easily affected by music, by the beauty of nature, etc.

I have found some other approaches helpful. I use breathing exercises to keep tension/anxiety at bay. I use visualization exercises when there is too much pain. Breathing exercises can also help pain by increasing circulation.
Meditation can also be helpful. There are many types of approaches which may help some.

I hope you have enough assistance with anxiety and depression?
These can compound the pain in a big way.

There is also an anxiety and a depression forum here.
We have been recently posting breathing exercises and meditations we find helpful. It's interesting to see what people find helpful.

I hope you will keep us updated as you feel up to doing so.


DejaVu