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CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body - her nerves are on fire... it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense... we keep searching for help and guidance... since many do not understand this horrible affliction.... thanks for any advice....

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bobberoo | @bobberoo | Jun 29, 2022
In reply to @bobberoo "Absolutely! Everything started a year and a half ago with a orthopedic surgeon removing a couple..." + (show)
@bobberoo

Absolutely! Everything started a year and a half ago with a orthopedic surgeon removing a couple of fibromas off of my right foot near the big toe pad. Apparently, he must’ve gotten too close to the medial plantar nerve and either nicked it or scar tissue built up around it so it threw off the communication of the nerve to my nervous system and that set off a cornucopia of bad things. About a month after the surgery I started really experiencing nerve pain in both feet and I also had five fibromas developing in my left foot almost instantaneously after the surgery which is very weird to both my podiatrist and myself. I’ve tried Tenex procedure which is a vibrating needle to remove the damaged tissue, I tried radiation and I’m also getting ready to try a medical grade 4 laser to try to heal my plantar fasciitis which also stemmed from the procedure a year and a half ago. Information, I’ve tried pretty much everything under the sun and I’ve also seen a neurologist, pain specialist (who tried to give me nerve blocks which did very little), two separate podiatrist one of which is a nerve specialist who wants to remove all of my fascia in both feet which I am a bit hesitant to do especially considering the fact that I am CRPS symptomatic. The one great thing about this, from what I understand CRPS pretty much involves 24 / 7 pain and I do not experience that which is definitely a God thing. I have intermittent pain and sometimes the pain is pretty severe but typically it settles down within a day or two. at the moment, I haven’t been able to walk for the last 2 1/2 months due to the tenex procedure and my feet are usually red, hot and swollen. I’m also a retired Air Force veteran with over 26 years in the service I really wish there was a program that I could attend at your hospital to help me but I highly doubt that’s the case. If it all possible, feel free to **send me a private message** and I’ll be more than happy to discuss this in detail. I’m gonna get through this, God‘s got me but I might be able to use your help 🙂

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I inadvertently uploaded a photo of me drinking one of my brothers Health shakes which was really disgusting and I can’t seem to delete it from my post. Please disregard it or delete it for me or else I’m afraid nobody will take me seriously!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 29, 2022
In reply to @bobberoo "I inadvertently uploaded a photo of me drinking one of my brothers Health shakes which was..." + (show)
@bobberoo

I inadvertently uploaded a photo of me drinking one of my brothers Health shakes which was really disgusting and I can’t seem to delete it from my post. Please disregard it or delete it for me or else I’m afraid nobody will take me seriously!

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Hi @bobberoo, We deleted the photo of the health shake as requested. Also you will notice your telephone number was removed from your message above. We recommend not posting personal contact information in the public forum. You can use the secure private message function to exchange contact information with another member.

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1 reply
bobberoo | @bobberoo | Jun 29, 2022
In reply to @johnbishop "Hi @bobberoo, We deleted the photo of the health shake as requested. Also you will notice..." + (show)
@johnbishop

Hi @bobberoo, We deleted the photo of the health shake as requested. Also you will notice your telephone number was removed from your message above. We recommend not posting personal contact information in the public forum. You can use the secure private message function to exchange contact information with another member.

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Understand 🙂 so how would I be able to get the information that I’ve posted so far to doctors who can make a difference with what I’ve gone through and what I need to do to get better?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 29, 2022
In reply to @bobberoo "Understand :-) so how would I be able to get the information that I’ve posted so..." + (show)
@bobberoo

Understand 🙂 so how would I be able to get the information that I’ve posted so far to doctors who can make a difference with what I’ve gone through and what I need to do to get better?

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If you mean how do you copy the all of the information in your discussion description and your posts, I think you can copy and paste the individual posts into a document that you can print to take with you to a doctors appointment.

Or do you mean how do you get a doctor who can help and work with you to get better, I would suggest seeking help at a major teaching hospital or a health facility like Mayo Clinic that uses a multidisciplinary team approach to healthcare.

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bobberoo | @bobberoo | Jun 29, 2022
In reply to @bobberoo "Foot issues and CRPS symptoms: I’ve had CRPS symptoms for over a year and it’s time..." + (show)
@bobberoo

Foot issues and CRPS symptoms:

I’ve had CRPS symptoms for over a year and it’s time I go somewhere to get treated and I’m not talking about just nerve blocks small device is inserted in the spine, I need to figure out where to go to get my nervous system re-balanced the Academy injections or lidocaine injections. Help please 🙂

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Makes sense. Now I just need to figure out how I’m gonna do that with the mayo clinic so I guess I’ll be getting on the phone soon 🙂 thanks!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 30, 2022
In reply to @bobberoo "Makes sense. Now I just need to figure out how I’m gonna do that with the..." + (show)
@bobberoo

Makes sense. Now I just need to figure out how I’m gonna do that with the mayo clinic so I guess I’ll be getting on the phone soon 🙂 thanks!

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If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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1 reply
bobberoo | @bobberoo | Jun 30, 2022
In reply to @johnbishop "If you would like to seek help from Mayo Clinic, contact one of the appointment offices...." + (show)
@johnbishop

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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Thanks!!! 🙏

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Moderator
Amanda Roe | @amandajro | Jul 1, 2022
In reply to @bobberoo "Foot issues and CRPS symptoms: I’ve had CRPS symptoms for over a year and it’s time..." + (show)
@bobberoo

Foot issues and CRPS symptoms:

I’ve had CRPS symptoms for over a year and it’s time I go somewhere to get treated and I’m not talking about just nerve blocks small device is inserted in the spine, I need to figure out where to go to get my nervous system re-balanced the Academy injections or lidocaine injections. Help please 🙂

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Hello @bobberoo. Thank you for sharing more of your background with @sueinmn so that she and other members can provide you with support you are seeking!

Because there is an existing discussion on CRPS, you will notice that I have moved your post here: https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/

I've done this so that you may also connect with other members going through similar situations. Members such as @nursejudith @suecutuli and @grannyzoo may be able to join you as recent contributors to this discussion to share some additional support.

Do you have an appointment scheduled somewhere at this time or are you looking for care recommendations?

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1 reply
bobberoo | @bobberoo | Jul 1, 2022
In reply to @amandajro "Hello @bobberoo. Thank you for sharing more of your background with @sueinmn so that she and..." + (show)
@amandajro

Hello @bobberoo. Thank you for sharing more of your background with @sueinmn so that she and other members can provide you with support you are seeking!

Because there is an existing discussion on CRPS, you will notice that I have moved your post here: https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/

I've done this so that you may also connect with other members going through similar situations. Members such as @nursejudith @suecutuli and @grannyzoo may be able to join you as recent contributors to this discussion to share some additional support.

Do you have an appointment scheduled somewhere at this time or are you looking for care recommendations?

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I want to get better but I honestly don’t even know where to start. I’ve seen so many specialist here in Alaska but of course healthcare is pretty sparse up here and I am sure I’ve got some kind of nerve issue in my feet which is causing the CRPS and I would love to come there for a multidisciplinary approach but I’m not sure how I would pay for it. That being said, I am currently 80% disabled through the VA and they pay for most care so I do wonder if there’s a way I could be seen there for treatment. I just want my life back. Let me know if you can think of anything, God bless!

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grannyzoo | @grannyzoo | Jul 2, 2022
In reply to @grannyzoo "I have CRPS. I’m sorry to hear you do, too. I went to an anesthesiologist who..." + (show)
@grannyzoo

I have CRPS. I’m sorry to hear you do, too. I went to an anesthesiologist who specializes in pain management. I could not get any type of medication to work on my body. My CRPS is in my legs. In March I had a permanent spinal cord stimulator implanted in my spine. I am using the Boston Scientific one. It has taken some time to adjust to it however, I do not regret putting this in at all! I strongly recommend it.

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Just a follow up to my implant. It’s a miracle! I am moving so much better and the pain is drastically reduced! I’ve started water aerobics from the waist down. Going three days a week. After the scar tissue fuses around the wires in the spine I’ll be able to do more with my upper torso. Almost daily I’m feeding better! Waking. Cleaning the house! My normal routine plus exercises now. Once the swelling went down around the battery there was a huge improvement!

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