Chronic Pain members - Welcome, please introduce yourself

@dustycat52 Thank you for sharing what has worked for you.

Here's a little story - years ago, before I knew I had Central Sensitization Syndrome (CSS), no doctor could tell me why my tongue burned so. I determined things like high sodium, citrus, or acid based foods induced it. Back when I worked, it would get so bad that I felt like I had a cats tongue texture-wise (but didn't) and used to soak my tongue in cold water like a bath to sooth. Sounds silly now but we do what we have to do in the moment, right? Toothpaste and all. Crazy what our CNS controls.

Management is everything. After going to Mayo's Pain Rehab Center, and learning management skills, I realized that by giving attention to symptoms made them worse. It was hard at first to ignore but practice makes perfect. Not to say chronic symptoms ever leave, but we sure as heck can do our best to not let them rule us.

Thanks again for sharing your tips. I hope you find comfort in your day today. 😊

PS: I notice you have been on Connect for a little while now. I'm wondering if you feel comfortable yet to fill out your profile and maybe add a picture so its easier for members to recognize you?

I'm glad to be here. Thank you.

I've been using Curable for almost a year and it is helping me understand my pain and work to alleviate or even end it.

Biggest help of the app: I've learned to my surprise that reptetition is important. I use the app 4 or 5 times a week and I used to avoid writing and brain visulations that I'd done before because I thought I'd learned everything they had to offer. Curable's team emphasizes the importance of repeating the many exercises the app offers because the brain needs to hear the same messages over and over again to successfully retrain itself.

What a great tip and take away! Yes indeed, repetition helps with neuroplasticity - the re-wiring or re-training the brain.

Thank you for sharing info about the Curable App and what has helped you. The fact that you've been using it for almost a year says a lot. I'm attaching a link for Curable Health App reviews in case anyone out there reading this may be interested in learning more about how it can help manage chronic pain.

Curable Health App Reviews:

- https://www.curablehealth.com/curable-app-reviews...%20More%20items

I'm grateful to have attended a 3 week pain rehabilitation program at Mayo Clinic's Pain Rehabilitation Center and learned about neuroplasticity, pain management and tools like cognitive behavior therapy, but not everyone is as fortunate. That's why I think the Curable App is such a blessing and useful tool for self-advocacy.

How did you come by the App? I often wonder if doctors ever recommend it.

I'm hurt and in pain for over a decade now. I'm afraid to even talk to anyone anymore, because disabled people get treated like garbage in this country. I feel half dead and going down the drain. There are no resources for me. I google sometimes to try and find answers, and I found this site. I am isolated and alone and I haven't really talked to anyone for years about this, because the medical system has no answers and nobody cares about anyone but themselves. Society just wants me to die. My neighbors harass me daily because I am in pain, and they think it is funny. I need to vent to somebody, so hopefully it is ok for me to vent here. I read some of the problems that other people are dealing with, and I feel like my pain isn't bad enough to vent about, but I can't take it anymore and I am afraid to go back on pain meds. I just take a lot of over the counter anti-inflammatories, and my stomach is messed up now. Anyway, hi.

Hi and I'd like to write about my struggles in life.. When I was 17 I was a passenger in a car driven by a drunk.. Several times he almost hit several vehicles, 2 of those vehicles were tractor/trailers.. I was sitting by myself in the back seat and each time I almost screamed I wished I had. The drivers wife was sitting beside him and there was a young boy about my age sitting beside her.. Several times she asked her husband to let Jimmy drive! Aw! hell woman was his comment I can drive this auto.. When we crossed the bridge over this fast moving river I looked out the window and thought we might find ourselves in this river.. As we exit's the bridge, I looked at the driver and to my horror, he had passed completly out! The car without a driver ploughs on toward the ditch and the bank beside the roadway! Knowing what was about to happen, I quickly ploped down on my hands and knees on the floorboard, admist a pile of canning jars and stacks of newspapers!! When the car hits the bank it begins tumbling end of end! As the car flips I felt severe pain from both arms breaking! I'll write more of my life later.. Ken

Hi. It's ok to vent here @ou812, sometimes you just need to get it out. Connect is a safe space. We pride ourselves on care, empathy, positivity, encouragement and shared knowledge.

You sound in very negative space and I'm sorry for that, but if you could think of one thing that would be helpful to you...what would it be? Besides venting, that is.

I am Carolyn. I have mild headache on the right side of my head. My cheek is puffy on that side. A CT scan was normal, as was ultrasound. I am waiting to hear the evaluation by the physician.

Edie. 70 yrs old. Diagnosed at 16 with scoliosis. Curves are now over 80 degree with rotation and also spinal stenosis. Pinched nerves in every vertebrae causing neuropathy in one leg and constant cramping in other leg. Have found no relief.

Hi Everyone,
I will post under "mmata". I am new to this forum that Mayo Clinic has consented to regarding a variety of topics. I'm so glad that a friend told me about the variety of groups offered.
I have had 8 spine surgeries at different levels of my spine. Unfortunately my spine continues to deteriorate in the Lumbar, the Thoracic and the Cervical levels of my spine. I also am bone on bone in both of my knees. They are both very painful and they buckle on me often causing me to fall or to barely be able to catch myself from falling. I have my second Spinal Cord Stimulator implanted in my spine, but even though it works, I can not tolerate its stimulation any longer as it seems to aggrevate my pain quite a bit. My former pain mgt doctor told me to leave it in my spine as I can't have anesthesia or surgery due to Carbon Dioxide Poisoning bouts where I almost went home to God on 3 separate occasions. That's why I can't have surgery on my knees too. In addition to all of this, I have developed severe Arachnoiditis all around my spine. My pain is so severe that I often pass out from the intensity of my pain. The terrible pain from various things causes me to not sleep much at all. I sleep each night anywhere from Zero to
1 - 1/2 hours of very broken sleep. I have to sleep in my recliner. I can't lay down at all due to my back situation and the resulting crazy pain. I am hoping to connect with others who have severe Arachnoiditis to learn from them what they do for their pain and what treatment they might be receiving. Thank you for letting me join the various groups. My prayers are with you all.
mmata

Hello, my name is Susan, 64, single, with so many things wrong with my body. Born with mild scoliosis, have Raynaud's syndrome, tons of trauma starting before I was 3. I pinched 2 nerves in my neck at 9, was in 3 major car crashes that hospitalized me but no broken bones or scars, just head trauma. At 24, I was diagnosed with PTSD and Major Depression. At 50, I developed Grave's disease (Hyperthyroidism), menopause and Fibromyalgia. The Grave's gave me a minor heart Attack. At 54, I developed anxiety from narcissistic abuse. I have sciatica, bilaterally and 7 thoracic disc bulging from coughing so hard from COVID I caught in 12/20. I have long Covid, developed COPD with chest, sternum, upper back and shoulder pain. I have problems with eating and can't gain weight. Doctors will not try nerve stimulation because I don't have enough muscle or fat and it would stick out. Epidurals help when they inject them in the right place. Just spoke with a doctor about what possible treatments there are for my spinal issues but all he wanted was to talk me in having the Minuteman screw placed in my lower back at one level. I can't find any reviews for the outcome of the procedure. He told me that they can't do anything for me, other than the Minuteman. Has anyone ever gotten an epidural that left you with full body restlessness, painful muscle/tendon pain and a migraine that lasts up to 5 days? Any and ALL suggestions would be accepted with sincere gratitude.