CRPS - anyone suffering with complex regional pain syndrome
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....
Interested in more discussions like this? Go to the Chronic Pain Support Group.
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!
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.
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?
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.
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!
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.
Thanks!!! 🙏
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?
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!
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!