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.

@lynjessy

Hi, Am Lyn Jessy
I have OPPL DESIESE,

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Well I just got diagnosed the problem maybe a couple or a few months ago. Now I am preparing for Surgery off Isand. I, am so scared. I, really don’t know what to expect. I am in pain 24/7. I, can’t even sleep much at any more.
My Dr. here tells me that rods will be inserted into my neck to mobilized it. That scares me.

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I will be back on line later.
Nice talking with you,. Thank you.

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@lynjessy

Hi, Am Lyn Jessy
I have OPPL DESIESE,

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@lynjessy, I have had about 45 surgical procedures, from simple little little repair jobs to a couple CABG overhauls. Each one has been tricky and complex and dangerous, and could have taken me out of the ball game. But after the first few, I decided not to worry about them or their after-effect. In our place in history, these events are just part of being human. So now, I kiss my wife, hold hands with a pretty nurse for a moment, shake hands with a doctor or four, and settle in for a long winter’s nap. It is all I can do. The rest is in the hands of God through the Grace of God and the best doctors I can find. So on we go.

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@lynjessy, I know you are off – line but I hope you will see my post when you log back in. I have had lumbar surgery, which is very different from your recommended surgery. I recommend that you get a second opinion from another spine or neurological surgeon. Also, do some research online to find out what hospital, and which surgeon are the best for your particular problem. See if you can find people who have had spinal surgery and are happy with their surgeon, who can recommend their surgeon to you. I think confidence in your surgeon relieves concerns a lot. It is normal to have fear about this kind of surgery. I don’t know what a diagnosis of PPL is, but I take from your post that is has to do with your cervical spine. My friend has had problems with her neck and was recommended to have this surgery. I don’t think shes had it yet, because she too was afraid of doing it, so you aren’t alone in your concerns. Also, it sounds as if you live in a remote area on an island, which is another reason to get a second opinion. All I can say is that having my spine surgery was one of the best things I have done. The pain on my left side has been completely relieved. I’m hoping the best for you and your problem resolution. Gail B

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@lynjessy Hello and welcome to Mayo Connect. I’m sorry you are having such pain. I see you are going “off island” to have surgery on your neck. That is an expression I am familiar with. I lived on the island of Oahu Hawaii for nearly 5 years. Many folks would come in from other islands to have their surgeries. Something I am unfamiliar with is OPPL disease. Can you share with us what that is? What are your symptoms?

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Good morning from Rochester, NY. I am a 47 yr old mother of 3, who suffers from fibromyalgia, acute chronic pancreatitis, and on Monday I will be getting 4 discs in my neck replaced. (C3 -C7) Chronic pain has become a way of life.

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Where do you go to get your discs replaced? I did not know it is available in U.S. I know it’s done in other countries.

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@pikappwife

Good morning from Rochester, NY. I am a 47 yr old mother of 3, who suffers from fibromyalgia, acute chronic pancreatitis, and on Monday I will be getting 4 discs in my neck replaced. (C3 -C7) Chronic pain has become a way of life.

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Hello @pikappwife, welcome to Connect. I don’t think I have heard of having discs replaced, and I think our community would be interested in hearing more about that if you are willing to share a bit more. Thank you for telling us a little bit about yourself as well. Here are some discussions I think you may want to check out to get started:

– Fibromyalgia Pain, http://mayocl.in/2hgUGcv
– 17 year old daughter with endometrosis, http://mayocl.in/2ohoHw5 (discussion includes members with pancreatitis)

I look forward to seeing more posts from you on Connect.

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@robertrm

Hi, my name is Bob 58 yo and I live in Rancho Mirage, CA. I was in a skiing accident 16 years ago and did a lot of damage to my back. Have had 4 surgeries over this time with the last being a spinal fusion from T1 to pelvis. Have been on opiods and gabapentin for 2 years to help manage incredible relentless pain. Had to stop working in March 2014. My mental state is very poor. Very depressed. I keep telling myself that this is not going to kill me. Others are in as much pain but not going to make it. My spouse is awesome and supportive. But I feel hopeless often and a burden. Has anyone else been to this point?

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@sutherlin, you mentioned you were seeing a neurosurgeon on the 22nd of March. Were you able to make that appointment? What did you find out and are you still looking at having surgery?

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@robertrm

Hi, my name is Bob 58 yo and I live in Rancho Mirage, CA. I was in a skiing accident 16 years ago and did a lot of damage to my back. Have had 4 surgeries over this time with the last being a spinal fusion from T1 to pelvis. Have been on opiods and gabapentin for 2 years to help manage incredible relentless pain. Had to stop working in March 2014. My mental state is very poor. Very depressed. I keep telling myself that this is not going to kill me. Others are in as much pain but not going to make it. My spouse is awesome and supportive. But I feel hopeless often and a burden. Has anyone else been to this point?

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I had a nerve block on the L4 nerve yesterday 3-30 and for the first time in 6 years I was pain free. The neurosurgeon wanted to pin point the exact cause before he does surgery which I am thankful for. Now waiting to see when to schedule surgery. He will be doing the one where they cut away bone to make the channel bigger. He said he doesn’t want to fuse because already having the Harrington rod in the main part of my back will just send us on a slippery slope to hell.

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@robertrm

Hi, my name is Bob 58 yo and I live in Rancho Mirage, CA. I was in a skiing accident 16 years ago and did a lot of damage to my back. Have had 4 surgeries over this time with the last being a spinal fusion from T1 to pelvis. Have been on opiods and gabapentin for 2 years to help manage incredible relentless pain. Had to stop working in March 2014. My mental state is very poor. Very depressed. I keep telling myself that this is not going to kill me. Others are in as much pain but not going to make it. My spouse is awesome and supportive. But I feel hopeless often and a burden. Has anyone else been to this point?

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Hi – Good luck with your surgery – let us know how everything goes. Where is the surgery going to take place?

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@robertrm

Hi, my name is Bob 58 yo and I live in Rancho Mirage, CA. I was in a skiing accident 16 years ago and did a lot of damage to my back. Have had 4 surgeries over this time with the last being a spinal fusion from T1 to pelvis. Have been on opiods and gabapentin for 2 years to help manage incredible relentless pain. Had to stop working in March 2014. My mental state is very poor. Very depressed. I keep telling myself that this is not going to kill me. Others are in as much pain but not going to make it. My spouse is awesome and supportive. But I feel hopeless often and a burden. Has anyone else been to this point?

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@sutherlin Good luck with your surgery. It sounds like you have a really good doctor so I am sure it will all go well.
JK

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@robertrm

Hi, my name is Bob 58 yo and I live in Rancho Mirage, CA. I was in a skiing accident 16 years ago and did a lot of damage to my back. Have had 4 surgeries over this time with the last being a spinal fusion from T1 to pelvis. Have been on opiods and gabapentin for 2 years to help manage incredible relentless pain. Had to stop working in March 2014. My mental state is very poor. Very depressed. I keep telling myself that this is not going to kill me. Others are in as much pain but not going to make it. My spouse is awesome and supportive. But I feel hopeless often and a burden. Has anyone else been to this point?

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I live in Montana. I originally had the harrington rod done at the Mayo Clinic in Minnesota 39 years ago. I have never had any issues with the rod at all. It’s those vertebrae below that have taken all the jarring and twisting all these years that have the problem.

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@robertrm

Hi, my name is Bob 58 yo and I live in Rancho Mirage, CA. I was in a skiing accident 16 years ago and did a lot of damage to my back. Have had 4 surgeries over this time with the last being a spinal fusion from T1 to pelvis. Have been on opiods and gabapentin for 2 years to help manage incredible relentless pain. Had to stop working in March 2014. My mental state is very poor. Very depressed. I keep telling myself that this is not going to kill me. Others are in as much pain but not going to make it. My spouse is awesome and supportive. But I feel hopeless often and a burden. Has anyone else been to this point?

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Thank you @contentandwell

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Hi to all! I’ve had CRPS in my left hand/arm for a year now. I’m interested in learning how others cope with CRPS…what treatments they’ve found effective for pain, insomnia, depression (due to coping with this illness and its consequences), and regaining limb function.

I’ll share my experience: Last year, my pain was more bearable with a combination of nerve blocks, acupuncture, biofeedback, edema therapy, and mindfulness, and I had some functional improvement with OT & PT (including mirror therapy). I also found it useful to see a pain psychologist. I would recommend trying this type of integrated program if you have coverage. Although I was never completely without pain, it was at lower levels a lot of the time, and I felt like I was making progress. Plus, the practitioners all knew a lot about CRPS, so I could ask all my questions and get a lot of support.

Sadly, this year, my deductible is so high that I can’t afford medical care or therapies. I’m only taking topamax, which takes the edge off somewhat and is thankfully cheap at Costco, but I have much more pain, stiffness, and depression than last year. I’m guessing it’s because I’m not able to have any therapies. I am able to do my OT & PT exercises on my own, but have no guidance, and most of the other treatments are not “DIY”.

I’ve tried everything to get over the insomnia, even a sleep hygiene class and sleeping pills, but no luck. The pain wakes me up even through sleeping pills. Does anyone have any advice or solutions?

Also, does anybody have experience with adaptive technology, to compensate for not being able to type with both hands? I can’t type or do much of anything for long with the left hand, which affects my ability to work. I find voice recognition software glitchy and slow to use, but maybe some are better than others? I’ve also heard there are handwriting to text programs. Anyone have feedback on these?

Oh, and how do others explain CRPS to friends and family? I’d love to hear that.

I just keep hoping for this to go into remission…I’m sure you’re all in the same place.

Thanks for reading this & please take good care of yourselves.

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