crps247 Complex Regional Pain Syndrome
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The Time In-between

22/2/2017

 
Picture


Fear is making me cautious lately, I am not venturing out as often as I would like or have done during the past year when my pain was less.
Fear of pain is a difficult emotion to overcome. Fear is a powerful force, it creates anxiety, and often continuous anxiety as we worry about when the next severe pain flare will hit us. When the pain hits, fear often accompanies it in full force, for me it feels as if I have gone into battle, this of course ramps up the sympathetic nervous system even more which then fuels more /or more severe pain. I like to believe I am on top of fear but my gut often tells me otherwise, this is the cue to do some deep breathing, mediation, or anything that calms my mind, this is the time to remind myself I have survived this pain before and it does eventually settle down, sometimes for days, it is the good days in the future I try to focus on.

However my recent pain flare last December really rocked my confidence because it was one the worst I had experienced since my CRPS began. My Ketamine infusion in early January helped to lower my pain and I was able to start doing a little weight bearing again without crutches, a few steps at a time is better than nothing but I am still tired and emotionally weakened from December’s flare so I have been laying low, working in my studio and getting through each day with low pain, I feel a bit like I am in limbo, heading towards the half way mark between my last Ketamine and my next one in April. The closer I am towards knowing help is close the stronger I get.

I am now in my 10th year of CRPS and my changed life, I enjoy spending many hours in my studio painting or printmaking, the hours go quickly but I do get ‘cabin fever’ when I don’t go out for weeks on end, I need to connect with the outside world physically instead of online. So last week I ventured out for my first outing since my infusion, the weather was perfect and we drove to a nearby town and ate a cut lunch overlooking the town and the Grampians ranges from the lookout, I did a couple of quick sketches, I then did a little bit of shopping on my portable scooter. On the way home we stopped for coffee and cake in a beautiful little cafe in the wine region. We spent time chatting like ‘normal’ people', I felt like I had joined the human race again and validated that the world was still there and not a lot had changed.

So I continue to spend most days in my studio, I survive each day and am grateful for when my pain is low. My artwork and the beautiful things in my garden help sustain me. As time progresses and I am closer to my next infusion I will become bolder and perhaps attempt a bigger outing and try to pace it so I don’t end up with a massive flare. It takes a lot of courage to do this, something I feel lacking in at present.  It takes courage to keep living with CRPS, courage to participate in life and risk pain payback but if I give up trying my world will keep shrinking so I like to think this period of being so cautious is only temporary and that there will be better months ahead.

Karee
28/3/2017 14:54:38

Hi Rosemary
Always love reading your posts !!

Rosemary
28/3/2017 16:32:02

Thanks Karee, your comment is much appreciated, it is always good to know someone out there is enjoying reading my posts!

Deb
3/4/2017 14:28:16

Rosemary, I just found your article which led me to your blog. First I am wrapping my arms around you giving you a hug. Your story is so brave. Like you my CRPS resulted from nureuoma surgery. It took 3 yrs and many, many doctors later to get the diagnosis. The original podiatrist didn't catch it after my specific complaints of "burning" pain that was not all like the nureuoma pain he removed.
Nights are brutal but I'm so glad I found you. You had me at neuroma:)
I wish for you more better days-sincerely Deb

Rosemary
3/4/2017 18:11:48

Hi Deb
I am totally blown away by hearing from you. You are the first person I have met whose CRPS is caused by a neuroma surgery!
Do you get the horrific shooting pains? I hope not, the burning and throbbing is enough!
I have many emotions surfacing after reading your message. Thank you so much for posting. You can contact me via my contact form if you would like to talk more, I would be happy to hear from you.
All the best Rosemary

Deb
4/4/2017 13:47:52

No shooting pains, just burning & throbbing. I too had emotions reading your story. I've been trying to cope with at all. Its the nights that are always bad. After 3 yrs of finally getting diagnosed have been to pain mgmt, nerve block didn't work, the the doc suggested the implant that you mentioned but insurance won't cover much of it so I'm just trying to plug along. Im still holding resentment toward the doc that did the nureoma surgery. Early diagnosing is/was our somewhat saving grace from the research I've done. Not to say it could be cured but maybe it could have been held at bay. How can a podiatrist surgeon not know about Crps especially within 2 weeks of me telling him of the burning pain escalated at night/rest. I dont know, that part is hard for me to let go sometimes. I have learned little tricks at night. Sometimes they help and sometimes not. Your gravity pull is spot on. I wish you well!
Best~ Deb


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    Author

    Rosemary Eagle
    I am an artist www.rosemaryeagle.com
    I also have CRPS. The life of CRPS pain & disability and my life as an artist are intrinsically entwined
    . I look forward to your feedback and comments.
    Rosemary Eagle

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