Have you accepted your RSD/CRPS?
 

I remember Littlepaw (I think it was) using a really good phrase about dealing with this disease. It was something to the effect of, balance acceptance with fight.

I've had RSD now for over 2.5 years. It took nine months to get diagnosed so I've spent about two years trying to wrap my mind around this crazy disease and researching treatment options. I feel like have plenty of fight but I'm running low on the acceptance part. As long as I have some new treatment around the bend, I have trouble not thinking it's my magic bullet to make this nightmare go away. I can say it to myself a million times, and I'm in therapy. But I can't make it real on all levels.

What are your stories of acceptance or non acceptance?

Denise

Good question. For me it has been 10 years, four months...it's hard to accept the limits. Well, to find a balance.

Denise,
I’ve actually been thinking about posting this same question. I struggle with this so much. I switched therapists because the last one I saw did not know how to help me with this. I am seeing a good pain therapist now, but we haven’t covered this just yet. I know that I need to accept where I am right now in order calm the fight or flight response, but sometimes I feel like I just can’t accept this. I am constantly reading and researching what I can do next, because I know that the earlier I can get it under control the better. It is so stressful to know that it is all on me to figure this out. I feel like if I “accept” this it means I am resigning myself to a life of pain. There has to be a way to accept where I am now, without inviting the pain and disability to stay forever. I know that I will never have the same abilities as I did before, and I accept that, but I do not accept never ending pain for the rest of my life. Do I need to? I think what you quoted is the key: balancing fight with acceptance and I don’t know how to do it either.
Missy

This is such a good topic and such a difficult one. Finding balance in life is challenging to begin with.

What I work on the most with acceptance is this moment. Where I am right. now. I try not to project the future. It is imperative not to catastrophize the outcome because the truth is we can't see what it will be. I haven't gone down a road of thinking I will have pain of this nature the rest of my life. I don't think it is denial. I think it is an acceptance of this being what I have to deal with today and it may not always be that way. We don't know when or what might bring about healing and I just haven't given up on it. That said, I have gotten to point with this that if it doesn't change I will be okay. Part of that is because of improvements that have come slowly as a result of not giving up. Continuing to fight may not have ended the disease for me but it has decreased my symptoms to a manageable level for the time being.

There are many layers to accepting this illness. The initial injury or mishap, the lowered function, just the dang diagnosis. I found I had to work on these things separately. acceptance of each has come at different times and it is a work in progress. I only accepted the diagnosis after nearly a year. Sometimes I still get frustrated and sad though much less often and less deeply. I try not to focus too much on what I used to do (hike the Na Pali coast and generally schlep around anywhere).

One thing that helped me was praying, sometimes just that I wouldn't lose my faith through this. I didn't. Another was different therapy modalities, my counselor used EMDR and hypnosis. I liked both and they got around the chit chat in my brain. I've also done well taking the long view. I figure I am on a five year recovery plan and we'll see where I am at that time. That gives plenty of time for my nerves to reach a place of stasis and maybe some new understanding and treatment will be available by then. If not I will keep at the deep breathing, swimming and good self care. Oh and hugs. Did I mention the hugs?

I am sending out extra, :grouphug:

I was at an appointment with my GP many years ago, fairly early on after my diagnosis. He said something to me about acceptance that at the time I thought was crap but he was absolutely right about it. We were talking about learning to accept the diagnosis, the depression, the disability and everything else that goes along with my particular CRPS experience. He said:

"If you think that acceptance is the same as giving up or giving in then you still don't understand what acceptance means."

I did admit to him some time later after I was further down the line that he was right!!

Unfortunately the figures show that there is very little hope of a cure in my lifetime or probably in this century. Since the start of modern clinical trials there have been 49731 into a cure for cancer for CRPS that number is around 100.
I am putting together a medical team of the top Specialists in the UK 4 have accepted, and hope to get them a £10 million annual research budget but that a drop in the water but a lot better than the UK figures for 200 - 2013 which was a grand total of £250,000

Its going on five years for me and I still haven't been able to accept or absorb the pain of having rsd. It all still feels like a bad dream that I keep hoping I will wake up from soon but so far I haven't. It's very hard to absorb all that rsd had done to my body and mind. but i just try to take it a day at a time and just deal with today and block out what happened yesterday and what may happen tomorrow. And of course keep Faith that a cure will be found soon for all of us.

A recent troll of Clinicaltrials.gov surprised me with new studies that just started for CRPS. besides neridronate, there is a trial at Stanford for LDN and one starting on oral zolendronate elsewhere. This made me feel like there is at least interest.

A troll of Pubmed with a search term "Complex Regional Pain Syndrome" turns up many, many articles on everything from immune to amino acid differences in CRPS. These are being published all the time. The research community has taken note...

It is only 2015. The century is young. I'm holding out some super genius will bring hope for the future.

I accept I have it and that it is hard to live with but I don't accept I'll die from it or die with it. Even after 17 years I keep trying new things and new combinations.

Not sure where I am on the continuum. The disease itself knocked me for a loop and due to an ER trip I had a brain CT with an incidental finding of a brain aneurysm. Not small enough to watch, but just big enough to have surgery. Surgery and CRPS! Not a good idea. On the other hand, too much to think about.