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Chronic pain in every cell...

Posted by Vickie @vickiekay, May 7, 2020

I have Rheumatoid Disease, scoliosis and osteoporosis. However even with Enbrel, Plaquenel, Prednisone, pain meds (and other meds), I have uncontrollable pain. It feels like all of my ligaments and tendons are three inches too short. I cannot stretch them out! I also feel jittery often....does anyone else have this combination? I am a patient at the Clinic, but there are so many things happening and I feel like each department is confused. I need a holistic view. Any advice is welcomed. Thank you in advance!

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Mentor
John, Volunteer Mentor | @johnbishop | May 7, 2020

Hi @vickiekay, I imagine with everything that is going on now with COVID-19 that it's easy to feel frustrated with your care at the Clinic. I'm assuming you mean Mayo Clinic. Have you thought about using the Mayo Clinic patient portal to send a message to your care team or doctor to see if they can setup an appointment with a specialist to help you find a treatment that works better for you? Are you getting confusing messages about pain management or about dealing with COVID and coordinated care with your providers between departments?

REPLY
Vickie | @vickiekay | May 7, 2020

Thanks for your concerned reply, John. I am already working with several departments at Mayo, including Rheumatology, Neurology and the Pain Clinic. I seem to be an unusual case in spite of many attempts and lots of professional expertise to find answers. It has been a difficult journey for 30 years. Hopefully, the next year will bring some relief...I keep hoping! <3

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Vickie | @vickiekay | May 16, 2023

I had posted above in 2020. In 2022, it was discovered that my cervical spine had multiple levels where there was a LOT of pressure and compression on my spinal cord. Long story short, I had C2 to T3 fused completely on November 3, 2022. Most of my odd symptoms have left after having 2 rods and 27 screws hold my cervical spine straight again! The recovery time for this surgery is anticipated to be one year and I am just at the six month post operative mark at the time of this writing; however, my gait is even, my posture is much more straight, even though my lumbar still has scoliosis; and my speech is even more clear! My doctors told me that the lower spine problems often improve after cervical spine surgery because all brain signals go through the cervical spine and if there are compressions onto the spinal cord, the signals get confused! I hope that this helps others who are struggling with some of the same odd symptoms that I was having! Best wishes!

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Mentor
Becky, Volunteer Mentor | @becsbuddy | May 17, 2023
In reply to @vickiekay "I had posted above in 2020. In 2022, it was discovered that my cervical spine had..." + (show)
@vickiekay

I had posted above in 2020. In 2022, it was discovered that my cervical spine had multiple levels where there was a LOT of pressure and compression on my spinal cord. Long story short, I had C2 to T3 fused completely on November 3, 2022. Most of my odd symptoms have left after having 2 rods and 27 screws hold my cervical spine straight again! The recovery time for this surgery is anticipated to be one year and I am just at the six month post operative mark at the time of this writing; however, my gait is even, my posture is much more straight, even though my lumbar still has scoliosis; and my speech is even more clear! My doctors told me that the lower spine problems often improve after cervical spine surgery because all brain signals go through the cervical spine and if there are compressions onto the spinal cord, the signals get confused! I hope that this helps others who are struggling with some of the same odd symptoms that I was having! Best wishes!

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@vickiekay What a wonderful post!! I’m so glad that you’ve gotten some success! How and where did you find the holistic help you were needing?

REPLY
Vickie | @vickiekay | May 18, 2023

I had appointments and cervical spine surgery to fuse C2 through T3 at Mayo Clinic in Rochester. I was in St. Mary's Hospital for 21 days, with the last few days in the Generose Spinal Cord Injury Rehabilitation program. I had amazing doctors , caregivers and physical therapists! I am so thankful! < 3

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