Chronic Pain members - Welcome, please introduce yourself

Thanks so much for the guidance to also join this group… I have fibromyalgia, Hashimoto’s thyroiditis, and recently diagnosed at Mayo Clinic in Rochester with Functional Neurological Disorder/ Functional Movement Disorder… I was on Cymbalta for fibro, but came off of it when I was at Mayo due to several tests suggesting I be off meds… I feel like it just maybe took the edge off, I can remember one day with no pain- I woke up at the beach four years ago (no Cymbalta) and bawled… I rolled out of bed and realized I didn’t have pain. Fast forward to now and I hurt so much. It’s nice to have a group that understands… I’m a teacher and I put on such a happy face when I’m there. It’s exhausting…

I was recently diagnosed with Central Pain Syndrome. The pain is intense in my entire body. I’m going to start cannabis gummies at night. I find exercising very difficult. Also, both hands have serious arthritic pain. I hope to connect with someone in similar conditions.

Hi Sue @sue15, Welcome to Connect. You are definitely not alone. You might want to checkout this discussion started by Rachel @rwinney --- Central Sensitization - please share your stories: https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/.

Have your doctors suggested any treatments like a pain clinic?

Hi there @sue15, welcome. I'm glad John brought me into the conversation. I'm sorry to hear you are struggling with central pain syndrome aka central sensitization syndrome (CSS). How long has it been?

It's difficult to know how to treat your body when it acts as a loud speaker due to hypersensitivity. Although I don't have arthritis, I was diagnosed formally with CSS after years of not understanding what was wrong. I went through a 3 year period where pain intensified from mitigating factors like neuropathy, migraine, eye disease. I very much can relate to having pain throughout my body and finding it difficult to exercise. There is a spiral effect that happens and its called the "cycle of pain". It includes behavioral and emotional changes, physical changes, insomnia, withdrawal, depression, anxiety, etc... the list goes on.

Do you mind sharing a bit more of your story and what approaches you've tried for pain management? What sort of team or support system do you have in your corner?

It started two years ago. We moved to a new house (old 1949) and we’re near a canyon and mountains. I have 2 knee replacements that were FINE for 10 years and then one started hurting. My doc said do PT the implants are fine. 2 weeks later my other knee started in pain. Then I had severe pain in my stomach. Lots of tests were done and I was getting worse. My doc is a pain specialist at IHC Layton Pain Management Clinic in Utah. Now I’m starting a low dose of cannabis gummies.

I have lots of friends. I can walk. I do meditating and listen to Soothing Pod. I eat healthy. I have pain in my head. What is happening to my head at this time. Hand arthritics a big deal. Fortunately, the Volatran cream helps my hands. I take walks on sunny days.

It’s taken 2 years to get a diagnosis. EKG, EMO
X-rays, etc.!!I have 3 doctor.
Psychiatrist, amity Doctor, and Pain Specialist.

Ugh so sorry, Sue, that you've hit this speed bump and are having chronic issues. I'm glad you are working with a pain clinic, if that works for you. Generally pain "clinics" rotate around medications or injection procedures. Whereas, pain "rehabilitation" centers offer a more holistic approach treating the whole person through cognitive behavioral therapy to help with emotional and behavioral needs that come along with living in chronic pain and finding acceptance. Also, physical fitness and helping to teach proper and safe activity. Reducing chemicals is also typically involved. Just a thought and I wonder if you might consider a different approach one day?

In the mean time...how frustrating to not know the why behind the what. Why are you having chronic knee pain and stomach pain now. It seems doctors have not been able to figure it out. Do you think you've been tested properly and do you feel confident in your doctors having done the best job for you? If so, and you are simply left with chronic pain, here is an interesting video about central sensitization. Dr. Sletten from Mayo Clinic, Florida gives a heck of a break down of the "why behind the what".

Dr. Christopher Sletten - Central Sensitization Syndrome (CSS) -

- https://youtu.be/vJNhdnSK3WQ

I look forward to your feedback and hope you get a chance to watch the video.

How nice that you live near canyon and mountains in Utah. It sounds beautiful and must provide lovely scenery for your walks on sunny days.

It sounds like you've got a good idea of how to manage and find distraction through meditation, socialization and physical activity. Way to go!

Hi Angie - thank you for being a teacher most importantly, but I definitely understand how difficult is to put on a happy face and push through your job when you hurt. Have you considered disability or early retirement? Perhaps reducing your hours or taking on a different position? Just brain storming here. I ended up going on temporary disability which turned permanent and it was for the best. Pushing and crashing does not help chronic conditions.

Do you have any consideration of trying a pain rehab center like Mayo's?