@rwinney Hey again! So, I went back to work this past week and it was really tough, both mentally and physically. I'm on light duty and have changed my position at work temporarily so I can continue to work and get paid etc, and not compromise this last surgery's success. The first two days were horrible, physically. And, I attribute that to "not being ready" to return to work + my body's unfortunate ability of absorbing everyone's energy and all the stresses around / inside of me. I'm "off" on Wednesdays and can never seem to find time to rest, but I did try my best. The next two days were OK, but still in moderate pain, despite my efforts to manipulate (change/play around with) the settings on my implant's remote. Thankfully, this is nothing new to me and so the level of pain (even tho it was completely off the charts) did not catch me off guard, at the end of the day. All I can really do is accept each day as it comes, move on and be thankful for what I have. So, this weekend, I'm doing my best to mentally detox, but it's still busy. But, I'm looking forward to reengaging in school again, tho I'm also enjoying the "time off" because I know I'll be very busy for the next 4 months. Overall, though, I'm doing good and the pain has significantly subsided since yesterday. Thanks for the well wishes and good thoughts, I always appreciate the encouragement from everyone on here, and that is a huge element in what keeps me going. 🙂 On another note, I just found out my poor Mom has a very bad case of shingles, and she's dealing with probably a more severe amount of nerve pain than I ever did (I can only presume, not for certain) and, though, it's horrible for her, it's good for me because I can relate and empathize. She's watched me go thru this for so long now, that she's "familiar from a distance" with all the battles. And, I think, that helps her with keeping her mindset positive and knowing how to find ways to face each day and always move forward. I wish I could take it away, but I know I cannot. This is her battle - I can only hold the shield in front of her while she wields the sword, so-to-speak. Sorry lol, I'm a writer, daydreamer and adventurous child at heart, so I often catch myself speaking in metaphors and illustrations, because that's how I know to communicate best. 🙂 Hope you're doing okay, wishing you all the best and joy in the world! <3
Remember, the settings on your implant can only take you so far with pain management. I'd imagine it still requires you to do your part in using the tools of moderation and modification to help balance out its positive benefits. Do you happen to use a daily or weekly planner to hold yourself accountable to keep on a schedule? Scheduling helped me tremendously for realistic expectations in trying to avoid the ole push/crash cycle. Don't forget the important self-care things like exercise, rest, meditation.
Regarding stressors around...CBT tools really can help in teaching ways of absorbing less stress and worry. and prioritizing your needs.
Sorry about your mom's bout with shingles. I'm certain you are a positive influence and support to her. Wishing her all the best.
Although updates about your Boston Scientific implant are welcomed and helpful to those with CRPS, not at the expense of your time and energy. Please prioritize by putting your needs first so that you can be your best self. Take care and good luck in finding your healthy balance.
@andylynn, You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.
Another tool you might want to check out is Google Scholar (https://scholar.google.com/) if you haven't already seen and used it. I like that it lets you sort results by year.
Sorry am slow responding-- so she was diagnosed in March 2021, and after failed meds and ganglion stellate block, we started ketamine in April 2021-- 3 weeks twice a week to begin, and now a booster treatment about every 10 weeks.. it's a rough few days after the treatments (completely exhausted and can't do anything)- but then the pain starts to lower slowly and can get as low as 2 or 3- which is great... Before starting these treatments, she was at an 8 most days-- As far as side effects- the actual ketamine is out of her system, from what I understand, within 12 hours-- but yes she is lethargic for a few days- but that's it.
Thanks for your comments regarding school-- even though she's a senior, we are considering helping her study for a GED so that then she can just do community college on her own terms-- as a full high school load has been so very stressful and increased depression/anxiety and she was barely able to pass last year. Concentrating and focusing for that many hours under pressure is just making things worse.. On a brighter note, I think her high school is going to allow her to continue in marching band-- the band director actually made her a special harness to allow her to continue playing the mellophone (her diagnoses are all in the left shoulder/arm/neck)-- so so thankful-- it's basically the last 'sport' she can participate in... thank you again for all of the great info!
This is my first post here and I'm stunned at reading your comment. My daughter had a left side brachial plexus injury in March 2021 that turned into CRPS. It's been a hellish two year for us. We did the FIRST program at Cincinnati but her GI pain (where it seems to have shifted) was so bad she couldn't eat and became too unstable to continue. It was one of the worst days of my life.
It's continued another year and we can't go on like this. It looks like Mayo in Rochester is going to be the most likely option for her if they'll take us, and I'm anxious for a thousand reasons.
But we need to get her back to band. She should have been a drum major this year.
I was diagnosed with RED/CRPS in the fall of 2012. Within a year I was wheelchair bound as it became excruciatingly painful to be weight baring at all. Then my blood pressure started flipping all over the place, in the space of an hour it can go from 90/60 to 225/115. Now it has spread to my right arm-so apparently I will be one of the cases that is going full body. My question is this ... Why is no research being done? Why are we being left to basically a situation of 'let's try this, no-let's try that'. The treatment of patients suffering with RSD/CRPS is archaic.
Hi eileen,sorry about you having this disease.i also have it , do u know if you are type 1 or type 2 crps. Im type 2 from a horrible fall at work. Started in my heel, from a shattered heal and two other bad broken bones. Went from my right heel to my whole leg to my stomach. Which was awful and still is im full body now internal organs are all eďffected too.my blood pressure is crazy like yours how it jumps up too extreamly high levels just by standimg up and walkimg a short distancei , went on blood pressure meds about a year ago but it still jumps up high . Have u tried any treatments , ketamine infusion, lidacaine infusions. They helped me tremendous in the past. But now they just stop me from being totally bed řiddim,but i cant really do anything. I have it in my face neck and head now and the sweelimg and pain is terrible.i just bought a vagus Nerve stimulátor . Have u heard of it , it stimulateďs the vagus nerve on our brain stem . They say it takes a couole weeks to start seeing progress. Ive been using ten days so far. No changed yet .but fingers fingers crossed. I go get 3 ketamine boosters in pa the next 3 days. Hoping to get reliéf. Hope you are having a low pain day
I'm sorry to read about your situation. I've no similar experience on which to draw, but I want to mention one point for you to consider.
I've had a lot of trouble with my sympathetic and parasympathetic nervous systems. They're supposed to be complementary, but mine seem to be at war. I've resorted to various combinations of food and beverages, simple tools like square breathing or the Valsavla method, and settings--more relaxed or more stimulated--to try to manage them.
But even when I have an idea of what the problem is, I'm not sure what the right approach is. Let's say an overactive sympathetic system is causing a dry mouth, should I try to ramp up my parasympathetic system or ramp down my sympathetic system? Is doing the former likely to leave me with excess saliva?
The fact is that there aren't many tools for doing either, so I tend to pick one and go with it. (My tendency is to ramp up the underactivated system and ignore the overactivated system.) But I'm always reminded of a shop teacher telling us that if your car engine is over-revving, upsizing the brakes does no good.
This is my first post here and I'm stunned at reading your comment. My daughter had a left side brachial plexus injury in March 2021 that turned into CRPS. It's been a hellish two year for us. We did the FIRST program at Cincinnati but her GI pain (where it seems to have shifted) was so bad she couldn't eat and became too unstable to continue. It was one of the worst days of my life.
It's continued another year and we can't go on like this. It looks like Mayo in Rochester is going to be the most likely option for her if they'll take us, and I'm anxious for a thousand reasons.
But we need to get her back to band. She should have been a drum major this year.
Hi, I hope things are a bit better for her. Did you ever go to Mayo Rochester?
My 14 y/o has CRPS right ankle/foot/leg. She was originally diagnosed in 2019, age 9. She responded to Scrambler with Dr. D'Amato in Bonita Springs twice, each one year apart but it did not work for her earlier this year.
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Hi, I'm doing well. Thank you for the update!
Remember, the settings on your implant can only take you so far with pain management. I'd imagine it still requires you to do your part in using the tools of moderation and modification to help balance out its positive benefits. Do you happen to use a daily or weekly planner to hold yourself accountable to keep on a schedule? Scheduling helped me tremendously for realistic expectations in trying to avoid the ole push/crash cycle. Don't forget the important self-care things like exercise, rest, meditation.
Regarding stressors around...CBT tools really can help in teaching ways of absorbing less stress and worry. and prioritizing your needs.
Sorry about your mom's bout with shingles. I'm certain you are a positive influence and support to her. Wishing her all the best.
Although updates about your Boston Scientific implant are welcomed and helpful to those with CRPS, not at the expense of your time and energy. Please prioritize by putting your needs first so that you can be your best self. Take care and good luck in finding your healthy balance.
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1 ReactionThank you again John!
I have also found these resources:
@andylynn, You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.
Clearly the links to reliable research repositories are not spam. 🙂 Let me post them for you so that members can click on them directly.
- CORE https://core.ac.uk
- Science Open https://www.scienceopen.com
- British Library https://www.bl.uk
- Oxford Academic https://academic.oup.com
Pubmed and medscape are great resources.
Yes I was diagnosed in 2016.
I come on here to find out why my gall bladder has become so involved. Digestive issues I already have but this is worse.
This is my first post here and I'm stunned at reading your comment. My daughter had a left side brachial plexus injury in March 2021 that turned into CRPS. It's been a hellish two year for us. We did the FIRST program at Cincinnati but her GI pain (where it seems to have shifted) was so bad she couldn't eat and became too unstable to continue. It was one of the worst days of my life.
It's continued another year and we can't go on like this. It looks like Mayo in Rochester is going to be the most likely option for her if they'll take us, and I'm anxious for a thousand reasons.
But we need to get her back to band. She should have been a drum major this year.
-
Like -
Helpful -
Hug
1 ReactionHi eileen,sorry about you having this disease.i also have it , do u know if you are type 1 or type 2 crps. Im type 2 from a horrible fall at work. Started in my heel, from a shattered heal and two other bad broken bones. Went from my right heel to my whole leg to my stomach. Which was awful and still is im full body now internal organs are all eďffected too.my blood pressure is crazy like yours how it jumps up too extreamly high levels just by standimg up and walkimg a short distancei , went on blood pressure meds about a year ago but it still jumps up high . Have u tried any treatments , ketamine infusion, lidacaine infusions. They helped me tremendous in the past. But now they just stop me from being totally bed řiddim,but i cant really do anything. I have it in my face neck and head now and the sweelimg and pain is terrible.i just bought a vagus Nerve stimulátor . Have u heard of it , it stimulateďs the vagus nerve on our brain stem . They say it takes a couole weeks to start seeing progress. Ive been using ten days so far. No changed yet .but fingers fingers crossed. I go get 3 ketamine boosters in pa the next 3 days. Hoping to get reliéf. Hope you are having a low pain day
I'm sorry to read about your situation. I've no similar experience on which to draw, but I want to mention one point for you to consider.
I've had a lot of trouble with my sympathetic and parasympathetic nervous systems. They're supposed to be complementary, but mine seem to be at war. I've resorted to various combinations of food and beverages, simple tools like square breathing or the Valsavla method, and settings--more relaxed or more stimulated--to try to manage them.
But even when I have an idea of what the problem is, I'm not sure what the right approach is. Let's say an overactive sympathetic system is causing a dry mouth, should I try to ramp up my parasympathetic system or ramp down my sympathetic system? Is doing the former likely to leave me with excess saliva?
The fact is that there aren't many tools for doing either, so I tend to pick one and go with it. (My tendency is to ramp up the underactivated system and ignore the overactivated system.) But I'm always reminded of a shop teacher telling us that if your car engine is over-revving, upsizing the brakes does no good.
I hope the vagus nerve stimulator works for you.
Complex Regional Pain Syndrome
Hi, I hope things are a bit better for her. Did you ever go to Mayo Rochester?
My 14 y/o has CRPS right ankle/foot/leg. She was originally diagnosed in 2019, age 9. She responded to Scrambler with Dr. D'Amato in Bonita Springs twice, each one year apart but it did not work for her earlier this year.