Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@rwinney

Hi, @dustycat52 , thank you for introducing yourself in this thread. Burning mouth syndrome does not sound pleasant at all. I'm able to somewhat relate as I have Central Sensitization Syndrome and have odd sensory symptoms throughout my body, including my mouth.

Natalie, after almost 17 years you must have some good coping skills. Do you care to share what helps you through discomfort?

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I constantly sip really cold water. It helps to have something on my tongue. Sometimes I even smear it with toothpaste.

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Hello I’m Brenda. I’ve been suffering with chronic pain for approximately 10 years. I have osteoarthritis, fibromyalgia and a slipped disc.

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@dustycat52

I constantly sip really cold water. It helps to have something on my tongue. Sometimes I even smear it with toothpaste.

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@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?

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@rwinney

Hello Pat @patmcell, welcome, it's so nice to have you join us.

I have empathy for your struggle with migraine and chronic pain. You mention many treatments I also have tried yet never found adequate, lasting relief from.

Good for you and your exploration of CBT approach! Pain is a delicate space of understanding the difference between acute and chronic, and accepting that chronic does not leave, even with CBT, but learning skills and self-help tools to manage chronic pain is the best medicine we can give ourselves...no side effects that add to symptoms!

I have benefited from CBT, and have heard great things about the Curable App. Many members speak highly of Curable. You may want to check this conversation out:

Amazing Website App - Dealing with Chronic Pain through Curable App:

- https://connect.mayoclinic.org/discussion/amazing-websiteapp-in-dealing-with-chronic-pain-curablehealth-com/

How long have you been using Curable? What has been your biggest help or takeaway thus far?

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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.

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@patmcell

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.

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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#:~:text=App%20Store%20Reviews%201%20A%20powerful%20approach%20%22These,reduce%20pain%20and%20feel%20connected%20...%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.

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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.

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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

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@ou812

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.

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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.

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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.

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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.

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