Any advice for CRPS?

@maggieaz Hey Friend, I'm so sorry you're wrestling with CRPS, but I'm really glad you finally have an answer. I wanted to bring your attention to an ongoing discussion that might have some great comments (may have to read through a lot, but worth it). It's entitled "What Type of Doctor Diagnoses CRPS/Resource re: Treatment." I've got CRPS (one of many people here) and know the painful struggles all too well. If I or anyone else can be of any help to you, we will be happy to answer any questions you have based upon our own journeys. Glad you're here and best of luck to you!!

Thank you for welcoming me to the group. Yes, it is a good thing to finally have a diagnosis after two years and many doctors. However, to have it CRPS is not what I was hoping for.
I AM GOING TO SEE THE SURGEON TOMORROW AND I’M GOING TO SEE THE PAIN MANAGEMENT DOCTOR NEXT WEEK AND HOPEFULLY BE APPROVED FOR A PERIPHERAL NERVE STIMULATOR. THAT’S WHAT HAS FINALLY BEEN DETERMINED THAT I NEED SO THEY ARE GOING TO TRY THE EXTERNAL ONE AND THEN, IF THAT WORKS IMPLANT ONE. I’M HOPING FOR ANY RELIEF POSSIBLE.
I’M NOT SURE WHAT IS THE MATTER WITH THIS FONT, BUT IT KEEPS SWITCHING BACK-AND-FORTH IN THIS LITTLE BOX AND I’M JUST GONNA LEAVE IT THIS WAY. I AM VERY INTERESTED IN BEING IN THIS GROUP AND I AM GLAD THAT THERE ARE OTHER PEOPLE THAT ARE WILLING TO SHARE THEIR STORIES AND HELP EACH OTHER, AND I HOPE TO BE ABLE TO HELP OTHERS AS WELL. THANK YOU, MAGGIE.

@maggieaz Best wishes in your implant procedures! I've had one since 2022 and will be getting a second once I have a [personal] window to do so. It has really helped and I wish the same for you!! 🙂 If you have any questions about it, don't hesitate to ask. And, you're right - CRPS is not for the faint of heart. You are surrounded by many who understand and support you.

Hi Maggie @maggieaz, I thought I would share the link to the discussion @rivermaya34 mentioned above that might be helpful for you to scan through.

-- What Type of Doctor Diagnoses CRPS/Resource re: Treatment
https://connect.mayoclinic.org/discussion/what-type-of-doctor-diagnoses-crpsresource-re-treatment/

@johnbishop Thanks John! Always having my back 🙂 I meant to attach the link, but in my delirium I could not exactly think straight lol. So, thanks for coming behind me and linking that for @maggieaz and others to see. You're the best!

@maggieaz I recently went into REMISSION after almost 6 years with CRPSin both legs and feet. I tried gabapentin and that did not help me. I then followed a group in the New England area and learned one heck of a lot from them. I watched my diet. I stopped eating red meat, for protein. I ate fish and chicken. No fried food. No alcohol alcoholic beverages. I completely stayed away from SUGAR which causes INFLAMATION. Getting off of sugar did cause a withdrawal that lasted for about two weeks. What I did to ease that is I ate a piece of candy one time a day for seven days and then went to every other day for seven days and then I was completely off of it. I ate fruit, fruits and vegetables. I also eliminated carbohydrates and went gluten-free. I too have a an implant-Boston Scientific implant in my lower back. It is a godsend. It allows me to get MRIs where most other implants do not. I found a fantastic rep in the Charlotte, North Carolina area, with Boston Scientific, who has been extremely helpful with Adjusting my implant as I needed it done. Drink lots of water and keep moving. I know that keep moving part is tough but just do it. Do not caveinto this disease. I found an excellent Pain management doctor in, Charlotte, NC, who has given me me about five epidurals. I most recently have found a wonderful physical therapist who has been excellent with me. I do not believe in medications so I don't take them. ( I was at one time misdiagnosed with Parkinson's when it turned out I had had a mild stroke in the part of the brain were Parkinson's forms. I took the med…OMG! The Cleveland clinic put me on the Parkinson's medication and never ran an MRI. The medication was awful! But I digress.) Bottom line is I don't trust medicine now. I suggest you go on YouTube and locate this group in New England that has a very strong support group for folks with CRPS. They are a wealth of knowledge. I also suggest that if you're going to someone that's in Pain management and they herd you in like you are cattle that you continue your search for someone that will listen to you and address your individual needs. I completely understand your story about searching for a doctor that knows how to address this terrible disease. I strongly suggest that you go to a teaching hospital. I went to UNC. Oh my gosh, they were very thorough. I am 74 years old and thrilled to death to be able to walk again. I hope and pray this helps you! Keep searching for the help you need!

Forgot…no caffeine!

@grannyzoo @maggieaz I also have gone gluten free and cleaned up my diet (for gastroparesis sake) - fruits, veggies, clean meat, healthy snacks and no processed food (I'm not willing to give up coffee lol) - and that has given me longer "tolerable" windows to eat and not feel as bad, but personally, it has not helped me any with the CRPS pain (but that's only me - clearly, it is working for others, as listed here above, and that's WONDERFUL!). I live in SC area, and my BS reps are also great (my implant also allows for MRI's, but only at one location). I wouldn't trade them for anything. I would second going to a teaching hospital - there's a big one here near me - and my friend has also been to Duke and loves it. I am both hopeful and excited that you will find the relief you need! Good luck!