RSD CRPS

Posted by Anonymous @anon37227499, Feb 11, 2012

Anyone out there with RSD/CRPS?

Interested in more discussions like this? Go to the Brain & Nervous System group.

@rivermaya34

Hey @rwinney, so glad to meet you! I've been thru hell'n'back 10x over by this point in my life, so honestly these are just newly colored flames of the fire. 9/10 days I do pretty ok with keeping my head up and smiling. Encouragement is one of my gifts, and being an empathetic peacemaker at heart, I truly enjoy nothing more than uplifting others. That being said, I am only human and do suffer a number of 'bad days' that I wrestle with quietly. Over the course of many years, I've slowly drawn back on certain activities and recently at work, allowing few to step in and help as needed. I stay pretty busy, though – working full time, full time college student (I'm in my 4th year of BBS, pursuing MBA after), hunting on the weekends, I teach 5th grade Sunday school and coach 1st/2nd grade basketball, learning new languages on the side and pursuing multiple other closet hobbies in my 'spare' time. I try to go for a walk or run if I feel up to it, and I eagerly desire to return to the ice. My daily routine depends on the day, honestly…usually working 6-4 then come home and get plugged into school or whatever else. I don't sleep well most nights, so pretty steadily exhausted all the time. But, I'm grateful to wake up each day with new mercies on my side and adventures that await! 🙂

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I am in awe and almost in tears at such a valuable and wonderful testimony of magnificent, positive change! Thank you for sharing this with me…I feel I have found hope. I live closest to FL – what does it take to get into this program? Working on your other post now…

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@grannyzoo

I called the Mayo Clinic in Fl. Told them I have CRPS. They were able to direct me to the University of North Carolina to The anesthesiologist/pain management department. Check your teaching universities.

I strongly encourage you to find an anesthesiologist/pain management doctor rather than fooling around with just a “pain management physician”. I went to a pain management physician and he didn’t even spend five minutes with me before announcing he was giving me a Botox injection. He just herd the patients in and out. No questions asked. I left without the injection. I wanted to know what it would do to me. Do your homework. Botox weakens the muscle.

I have used a Sprint implant for 60 days and it helped immensely. It’s not a permanent “fix”. It was used to see if they could get the communication going in the nerves plus I got some relief. This company is out of Beachwood Ohio. Call them. I am currently waiting to get a Boston scientific implant into my spine.

Remember one of the best things you can do for CRPS is to make sure you get a good nights sleep. The other thing that I am being told is keep it moving. I’m working on it. Use a pool of you are able. Lose weight, too.

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Thank you kindly @grannyzoo !! I live in SC and my brother lives in NC, so the trip would not be far for me if I ended up going there. MUSC is here in Charleston, a top-notch teaching hospital. I will likely reach out to them for any options they might have…thank you. Moving is definitely the key, some days are a lot harder than others, though. But, the sun's still up'n shining, so what do I have to worry about? 🙂

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@grannyzoo

I called the Mayo Clinic in Fl. Told them I have CRPS. They were able to direct me to the University of North Carolina to The anesthesiologist/pain management department. Check your teaching universities.

I strongly encourage you to find an anesthesiologist/pain management doctor rather than fooling around with just a “pain management physician”. I went to a pain management physician and he didn’t even spend five minutes with me before announcing he was giving me a Botox injection. He just herd the patients in and out. No questions asked. I left without the injection. I wanted to know what it would do to me. Do your homework. Botox weakens the muscle.

I have used a Sprint implant for 60 days and it helped immensely. It’s not a permanent “fix”. It was used to see if they could get the communication going in the nerves plus I got some relief. This company is out of Beachwood Ohio. Call them. I am currently waiting to get a Boston scientific implant into my spine.

Remember one of the best things you can do for CRPS is to make sure you get a good nights sleep. The other thing that I am being told is keep it moving. I’m working on it. Use a pool of you are able. Lose weight, too.

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I can’t get the password to take on the blog.

Sent from my iPhone

On Jan 7, 2022, at 12:20 PM, Mayo Clinic Connect wrote:



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@rivermaya34

Thank you kindly @grannyzoo !! I live in SC and my brother lives in NC, so the trip would not be far for me if I ended up going there. MUSC is here in Charleston, a top-notch teaching hospital. I will likely reach out to them for any options they might have…thank you. Moving is definitely the key, some days are a lot harder than others, though. But, the sun's still up'n shining, so what do I have to worry about? 🙂

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I wish you the best!

I can’t get my password to reset so I can’t give you more info. I go to the chapel hill location.

Sent from my iPhone

On Jan 7, 2022, at 12:22 PM, Mayo Clinic Connect wrote:



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@grannyzoo

I called the Mayo Clinic in Fl. Told them I have CRPS. They were able to direct me to the University of North Carolina to The anesthesiologist/pain management department. Check your teaching universities.

I strongly encourage you to find an anesthesiologist/pain management doctor rather than fooling around with just a “pain management physician”. I went to a pain management physician and he didn’t even spend five minutes with me before announcing he was giving me a Botox injection. He just herd the patients in and out. No questions asked. I left without the injection. I wanted to know what it would do to me. Do your homework. Botox weakens the muscle.

I have used a Sprint implant for 60 days and it helped immensely. It’s not a permanent “fix”. It was used to see if they could get the communication going in the nerves plus I got some relief. This company is out of Beachwood Ohio. Call them. I am currently waiting to get a Boston scientific implant into my spine.

Remember one of the best things you can do for CRPS is to make sure you get a good nights sleep. The other thing that I am being told is keep it moving. I’m working on it. Use a pool of you are able. Lose weight, too.

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@grannyzoo I could not agree more that one of the best things to do for CRPS is get a good night sleep, and keep moving. Yes! And eating a proper diet to be proactive for your body to function healthier. Physical fitness, cardio, emotional and behavioral strategies and support, plus reducing or omitting chemicals and injections that affect nerves tissues and cells further causing distress to our bodies.

Whew, it's a package deal managing chronic pain. Great suggestions @grannyzoo!

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@rwinney

@grannyzoo I could not agree more that one of the best things to do for CRPS is get a good night sleep, and keep moving. Yes! And eating a proper diet to be proactive for your body to function healthier. Physical fitness, cardio, emotional and behavioral strategies and support, plus reducing or omitting chemicals and injections that affect nerves tissues and cells further causing distress to our bodies.

Whew, it's a package deal managing chronic pain. Great suggestions @grannyzoo!

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Thank you!

Can’t get back into the blog. Have tried resetting my password about 5 times. Something is wrong on the Mayo end. Needs a computer doctor! 😂

Sent from my iPhone

On Jan 7, 2022, at 1:45 PM, Mayo Clinic Connect wrote:



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@grannyzoo

Thank you!

Can’t get back into the blog. Have tried resetting my password about 5 times. Something is wrong on the Mayo end. Needs a computer doctor! 😂

Sent from my iPhone

On Jan 7, 2022, at 1:45 PM, Mayo Clinic Connect wrote:



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Hi @grannyzoo. What blog are you trying to get into? Is it a Mayo blog? Because if you’re able to talk to us in this forum, you should also be able to connect to any blog in our Mayo site.

I share your frustration when internet ‘things’ don’t go smoothly. We have computer gurus here so let me know exactly what blog you’re trying to access. Can you cut and paste the address for me?

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@grannyzoo

Thank you!

Can’t get back into the blog. Have tried resetting my password about 5 times. Something is wrong on the Mayo end. Needs a computer doctor! 😂

Sent from my iPhone

On Jan 7, 2022, at 1:45 PM, Mayo Clinic Connect wrote:



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Calling @johnbishop for IT support. He's a wiz!

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@loribmt

Hi @grannyzoo. What blog are you trying to get into? Is it a Mayo blog? Because if you’re able to talk to us in this forum, you should also be able to connect to any blog in our Mayo site.

I share your frustration when internet ‘things’ don’t go smoothly. We have computer gurus here so let me know exactly what blog you’re trying to access. Can you cut and paste the address for me?

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My password isn’t taking for the blog. CRPS

Sent from my iPhone

On Jan 7, 2022, at 2:13 PM, Mayo Clinic Connect wrote:



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@rwinney

Calling @johnbishop for IT support. He's a wiz!

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Thank you!

Sent from my iPhone

On Jan 7, 2022, at 2:23 PM, Mayo Clinic Connect wrote:



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@grannyzoo

My password isn’t taking for the blog. CRPS

Sent from my iPhone

On Jan 7, 2022, at 2:13 PM, Mayo Clinic Connect wrote:



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Thanks for the tag @loribmt and @rwinney. @grannzoo I could not find a blog with CRPS in the title?? Is this the blog you can't get into? — Adult Pain Medicine: https://connect.mayoclinic.org/blog/adult-pain-medicine/

I'm pretty sure that blogs, discussions, newsfeed posts are all available within the structure of Connect so if you can get to this discussion and post you are logged in and should have access to any discussion. I noticed you are using an iPhone. Do you also have a computer that you can use to see if you can access the blog using your computer?

We have had a few quirks with mobile devices including iPhones with access and password type problems where I think you might want to try logging out of Connect and then logging back in. Then see if it works for you.

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