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CRPS and Central Sensitization

J

johnmroy

New Member
It took me a while but I came to the conclusion that my symptoms are TMS. I have read Sarno, Gordon and Schubiner and have been putting things into practice for the last three months.

To keep things brief, I grew up in an abusive home. I have also been a firefighter for the last 13 years. I have been diagnosed with C-PTSD as a result. Over the last five years I’ve noticed fatigue, brain fog and random pains that I attributed to getting older and doing Jiu Jitsu. Last year, I had a high ankle sprain and after four month of PT I opted for surgery to do a tightrope fixation and tendon repair.

Post surgery, my nervous system completely shut down. I had autonomic issues, vision problems, tachycardia and I developed CRPS in my non-surgical ankle.

Since March, I’ve been on Gabapentin, Cymbalta and LDN. I have also done CBT, EMDR and daily meditation as well as weekly journaling.

I went from having severe burning pain in my ankle with noticeable color and temp changes as well as perceived weakness to now being able to run 2.5 miles, do 10 rounds of Jiu Jitsu and lift consistently through graded movement.

I am still suffering from allodynia in my left leg but I don’t have any nervous system crashes anymore.

Is there anything else I should consider? I have read sensory issues take the longest to heal. In your experience how long has it taken for allodynia to fade? I would really like to wear shoes or jeans for a whole day. I also notice that when I’m doing things I enjoy I have no symptoms but I flare like a mother at work (I’m leaving my job next month to get out of the stressful career field).
 
Congratulations on your success so far! Recovery from CRPS is a long road, but you need to stay the course. It took me 2 years to recover. My worst symptom was not allodynia but dystonia, but it really does not matter which one sticks around the longest. You should check out this website defeatcrps.com. You can also check out my profile and my success story.
 
TG957 said:
Congratulations on your success so far! Recovery from CRPS is a long road, but you need to stay the course. It took me 2 years to recover. You should check out this website defeatcrps.com. You can also check out my profile and my success story.
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I have actually visited the site. And some of your posts and many others on this page. They are what have given me hope that it’s reversible. I stay off of conventional websites for this reason. That’s also why I run, lift and do Jiu Jitsu. I know my body can tolerate it even if I have discomfort.
 
Also, to get to the full recovery, you will eventually need to get off the meds. But that will be your next step. Meditation, journaling and running are all excellent. Make sure each of your meditation sessions lasts at least 45-60 minutes.
 
Do nothing but give it time. This is absolutely just nervous system "junk" and pushing or pressuring this kind of sensitization just perpetuates it. You may also find that for times, you can wear clothing you'd like or closer to what you'd prefer and then need to back off of it for awhile if you have a flair up. Don't get discouraged.
I have this problem with bras - I am now able to wear them at times and sometimes even for days in a row, then I simply can not tolerate them for awhile. I could not wear jeans or any type of non-yoga type clothing for years. I can now wear items that have minimal stretch but are not confining. Some if it's what I've gotten used to comfort wise and some of it becomes a trigger for more symptom sensations. I've learned to just go with the flow. What shows up that day is where I am at. The key for me has to be able to behave and react in a very everyday fashion - nothing special here. Get rid of any of the fixing, frustration, embarrassment etc. - all the little self-judgements as well as judgements towards the sensations as eg. unpleasant, unwanted etc. You'll get there, you've come so far already.
 
Cactusflower said:
Do nothing but give it time. This is absolutely just nervous system "junk" and pushing or pressuring this kind of sensitization just perpetuates it. You may also find that for times, you can wear clothing you'd like or closer to what you'd prefer and then need to back off of it for awhile if you have a flair up. Don't get discouraged.
I have this problem with bras - I am now able to wear them at times and sometimes even for days in a row, then I simply can not tolerate them for awhile. I could not wear jeans or any type of non-yoga type clothing for years. I can now wear items that have minimal stretch but are not confining. Some if it's what I've gotten used to comfort wise and some of it becomes a trigger for more symptom sensations. I've learned to just go with the flow. What shows up that day is where I am at. The key for me has to be able to behave and react in a very everyday fashion - nothing special here. Get rid of any of the fixing, frustration, embarrassment etc. - all the little self-judgements as well as judgements towards the sensations as eg. unpleasant, unwanted etc. You'll get there, you've come so far already.
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Thank you so much for the encouragement and practical advice. I’m sure in time I’ll get more accustomed to things.

I think that’s what I’m struggling most with at times is just not being frustrated. I think it’s partially because this has been a huge wake up call for me but also because it can seem so trivial at times that I can’t wear certain things. I’ve actually had some clothing sensitivity for years I just didn’t realize what it was and it wasn’t this severe.

I’ll definitely continue working on it. Thank you so much. :)
 
TG957 said:
Then be patient and stay the course. Being a firefighter is very tough on the nervous system, it makes it harder to recover.
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Thank you. I totally agree. That’s why I’m leaving the career field. It’s wreaked havoc on my nervous system. When I’m not at work I feel great. When I’m there I’m right back into fight or flight and it’s like taking a step back.

Thank you for comments and your book. It’s been super helpful. It’s scary when you can’t get an answer from conventional docs on what’s happening with you. I’m glad to have found this site.
 
johnmroy said:
Thank you. I totally agree. That’s why I’m leaving the career field. It’s wreaked havoc on my nervous system. When I’m not at work I feel great. When I’m there I’m right back into fight or flight and it’s like taking a step back.

Thank you for comments and your book. It’s been super helpful. It’s scary when you can’t get an answer from conventional docs on what’s happening with you. I’m glad to have found this site.
Click to expand...

Feel free to reach out as you need it, and best of luck to you! I would LOVE to be able to post your success story on our website, I know you will get there for sure.
 
Hi @johnmroy and welcome, and congratulations for how far you've already come. This is the place to be, where you've already received top-notch advice from @TG957 and @Cactusflower, to let go of the calendar watching and the self-pressure. In this forum you will see that there is no one way to recover, and that each individual has to get there in their own unique time frame. Don't forget that your brain has been exposed to adversity and PTSD for decades - much longer than 3 months. This is a new skill and a new way of living, and there are significant old emotional patterns to be overwritten and relearned. It won't be a straight or level path, and you might experience temporary setbacks, but the forward motion can't be stopped now, and the changes will be happening!
 
@johnmroy, it occurs to me to ask if you might want to engage in some kind of program to give yourself some structure for continuimg the work? Did you complete Dr Schubiner's Unlearn Your Pain workbook? We have our 42-module Structured Educational Program on the main TMSWiki.org, or Alan Gordon's 21-module Pain Recovery Program on this forum. They are quite different, with the SEP being more in-depth, with specific journaling exercises and self-examination, and I think there is overlap with Schubiner's workbook. Alan wrote his program for us quite a few years before writing The Way Out to present the concepts of PRT. Both programs are free of cost or any kind of registration. Doing one or both a couple/few days a week, supplemented with reading posts on the Success Stories subforum, and listening to or watching video and podcast resources which are often recommended here, is a good way to keep "doing the work" without getting too overwhelmed or pressured by how to keep going.
 
TG957 said:
Feel free to reach out as you need it, and best of luck to you! I would LOVE to be able to post your success story on our website, I know you will get there for sure.
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JanAtheCPA said:
Hi @johnmroy and welcome, and congratulations for how far you've already come. This is the place to be, where you've already received top-notch advice from @TG957 and @Cactusflower, to let go of the calendar watching and the self-pressure. In this forum you will see that there is no one way to recover, and that each individual has to get there in their own unique time frame. Don't forget that your brain has been exposed to adversity and PTSD for decades - much longer than 3 months. This is a new skill and a new way of living, and there are significant old emotional patterns to be overwritten and relearned. It won't be a straight or level path, and you might experience temporary setbacks, but the forward motion can't be stopped now, and the changes will be happening!
Click to expand...
Thanks for your comment! And yes that is so true and it’s something I have to keep reminding myself. My old thought patterns and previous trauma are definitely engrained and this new thought pattern is foreign and is going to take some time.

As far as resources, I have completed “Unlearn Your Pain”. I also regularly come here for inspiration and tips. :)
 
johnmroy said:
Thanks for your comment! And yes that is so true and it’s something I have to keep reminding myself. My old thought patterns and previous trauma are definitely engrained and this new thought pattern is foreign and is going to take some time.

As far as resources, I have completed “Unlearn Your Pain”. I also regularly come here for inspiration and tips. :)
Click to expand...

If you've used Unlearn Your Pain, I'd go back to it, and perhaps try the same exercises but swap out for some new journal prompts. I'm going back to Dani Fagan's MyTMSJourney website because she offers so much free content.
Here's a page with journal prompt ideas. https://mytmsjourney.com/resources/tms-journaling-topics-themes/

Here's another page from her website with some more specific prompts: https://mytmsjourney.com/resources/journal-prompts-ideas-for-emotional-release/

Often, if I try and use these (I really don't journal much anymore, but if I do...) I don't actually end up journaling on the topic, however, the prompts seem to open some doors.

I have no idea if you are a creative person, but another excellent tool is The Artists Way which is a book full of traditional journaling and expressive journaling particularly aimed at those who are creatives (lots of pages anyone can use though!)

These tools helped me branch out and kept me from journaling the same topics over and over
 
Cactusflower said:
If you've used Unlearn Your Pain, I'd go back to it, and perhaps try the same exercises but swap out for some new journal prompts. I'm going back to Dani Fagan's MyTMSJourney website because she offers so much free content.
Here's a page with journal prompt ideas. https://mytmsjourney.com/resources/tms-journaling-topics-themes/
Click to expand...
I just recently joined her FB page. Didn't realize before I did that she was the one from My TMS Journey that I had looked at before!
 
I just wanted to come on here and post a quick update after 1.5 months or so. My sensory issues are gradually reducing. When I posted this, I couldn't wear jeans or cowboy boots. I can do those things now for more extended periods at a time (4-5 hours or so). Somedays, it seems like my sensory stuff will flare out of nowhere. And after I take my jeans or boots off, I have a stinging sensation that persists for a while. But I have been trying to practice more gratitude and that seems to help. I think I'm at the phase now where I've cleared out most of my major mental health issues. I feel a mindset shift where I really just want to continue to meditate, but not dwell on the past and try to be optimistic and hopeful each day. That seems to have the most positive effect on my symptoms from day to day. I'll continue to post as things improve.
 
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