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Chronic Pain members - Welcome, please introduce yourself
Welcome to the new Chronic Pain group.
I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Why not take a minute and introduce yourself.
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Hi, I’m Roxanne Cady and live in FL. I’ve had chronic head & facial pain, 1/4 of my face is numb & loss of taste for 23 yrs & getting worse. I’ve been diagnosed with SUNCT about 10 yrs ago. It’s very rare & very painful. I can’t get seem to get an appt w/Mayo JAX Neurology. Suggestions? I’ve had several doctors fax records but they are never recd. then I give up. So, two issues 1. Anyone else have SUNCT/SUNA 2. How to get appt??? Thanks!
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2 Reactions@rocky1 hello Roxanne, I’m glad you’re here, but sorry to hear about your difficulties.
Would you please tell us what SUNCT/SUNA2 is about. I’ve never heard of this, I guess it’s because it’s rare…
Thanks
Hi, hope you’re doing well. SUNCT stands for short lasting unilateral neuralgiform headache w/conjunctional injection & tearing hahaha! What a mouth full. Basically, I get shooting pains in my head, temple & eye area. You never know when it will happen & only last a few sec. but it’s nasty. Some days only a few bad zaps like zap zap zap & when it’s bad it’s about a hundred during the day & it’s brutal. It will bring you to your knees. How about you?
Ouch, that must suck. Sorry you have to deal with that. As a fellow chronic pain guy, I feel you. Have you tried emailing your records? Can you even do that? I am not sure, so I am asking if it's possible. All my doctors seem to share everything via digital these days is why I do ask. Best of luck to you!
@rocky1 oh my! I’m sorry you are experiencing that awful pain.
As far as getting an appointment at Mayo, I’m assuming you called them, and got permission to send them your records first.
I think it’s strange that the records from several doctors got lost.
I know from personal experience that it can be hard to get an appointment at Mayo. I’ve been treated at the Phoenix/Scottsdale location.
I think it would be best to keep calling them.
Hi, I’m Dan, from beautiful, sunny SoCal. I’m in my 60’s, retired. I have had long term pain in my neck, back and shoulders from arthritis, going on 8 years. I’ve experimented with several things to mitigate pain.
I have Adhesive Arachnoiditis, Tarlov Cysts and a Spinal Cord Injury. In 1986 I crushed L1 in a horse riding accident. I have had three spine surgeries and during the last operation my dura was cut, which caused a spinal fluid leak and Adhesive Arachnoiditis. I have four rods and screws fusing my spine. I am on Methadone to ease the pain.
I am sorry you are in pain. I have a femoral nerve injury after a total hip replacement 2 years ago. I don’t feel any pain but dumbness in the thigh and weakness. After a year I had some acupuncture therapy which partly reduced the dumbness but the problem is really the weakness as my other leg is hurting following another accident. But this small change in sensitivity might give me some hope. Is it possible to heal a femoral nerve after such a long time? Sorry I am not sure I joined the right discussion.
@dnca7495 I agree with your completely, there is no relief for upper back pain. If you don’t move or stretch it becomes stiffer and hurts more. If you stretch and exercise to keep limber it hurts too. It’s a no win situation. I have used generic topical Volteran from CVS and it has helped me somewhat.
Chronic pain from hip Revision
70 yr,female