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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.

Jen, Alumna Mentor | @sandytoes14 | Feb 22, 2017
In reply to @19lin "Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers..." + (show)
@19lin

Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers or sisters plus my Mom passed a few years before from Cancer. Luckily my wife was willing to help. My Dad was not as bad as it could have been, he stayed mobile and able to care for most of his body functions , unlike his sister who was in a nursing home the last few years of her life with Alzheimer’s. I was able to hire people to stay with Dad when one of us could not be there. Also, for good or bad, I was diagnosis with fibromyalgia a year or so before and was able to file for disability retirement from my job so I had time free to help him. If you can set up with a local group of support for Alzheimer's families that help find patient sitters to relieve you when you need it. Check on the internet for other support.<br />
<br />
Now the bad news I heard on the new that the feds are requiring all doctors who give opioids to take special training course to use those meds. This is just going to make it harder for all of us. Any day I expect to hear from my Doc that he will no longer be able to prescribe meds either because of fed regulations or his clinic’s refusal to give them out. Good luck 19lin

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@nanke99 Stores such as Walmart and CVS carry topical lidocaine sold under the brand name SalonPas 4% lidocaine patches. I can vouch for the effectiveness of them. The one I use is Rx from my doctor.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Feb 22, 2017
In reply to @johnnie "Hi, I have just joined the group. I have Chiari 1 Malformation . I had decompression..." + (show)
@johnnie

Hi, I have just joined the group. I have Chiari 1 Malformation . I had decompression surgery 6 years ago. I have chronic headaches along with other Chiari related issues. I did have the opportunity to go to Mayo Ciinic 's three week pain management program in Rochester. It was so beneficial. However, there is still the daily challenge of living with pain. The biggest challenge I have had recently is having a medication regime that assists in providing quality of life.

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Hello @johnnie, welcome to Connect. Thank you for introducing yourself to the Chronic Pain group members, where we have many active and supportive members.

@johnnie asked a great question about how the Mayo Clinic Pain Clinic's pain management program was helpful. I would also like to add a few discussions you may be interested in checking out:

- Chiari malformation type 1, http://mayocl.in/2emYs3Z
- New Daily Persistent Headache, http://mayocl.in/2dNTLL6 (while chronic headache may differ, great conversation about how to live with and deal with headaches)

@johnnie, I hope these conversations, along with @jimhd's question help you get started on Connect and we look forward to seeing more from you in the near future.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Feb 22, 2017
In reply to @jeriliz "My name is Jeri." + (show)
@jeriliz

My name is Jeri.

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I would like to add my welcome to @jimhd's. If you feel comfortable, would you mind sharing what brought you to Mayo Clinic Connect with the other Chronic Pain group members?

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GailBL, Alumni Mentor | @gailb | Feb 22, 2017
In reply to @19lin "Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers..." + (show)
@19lin

Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers or sisters plus my Mom passed a few years before from Cancer. Luckily my wife was willing to help. My Dad was not as bad as it could have been, he stayed mobile and able to care for most of his body functions , unlike his sister who was in a nursing home the last few years of her life with Alzheimer’s. I was able to hire people to stay with Dad when one of us could not be there. Also, for good or bad, I was diagnosis with fibromyalgia a year or so before and was able to file for disability retirement from my job so I had time free to help him. If you can set up with a local group of support for Alzheimer's families that help find patient sitters to relieve you when you need it. Check on the internet for other support.<br />
<br />
Now the bad news I heard on the new that the feds are requiring all doctors who give opioids to take special training course to use those meds. This is just going to make it harder for all of us. Any day I expect to hear from my Doc that he will no longer be able to prescribe meds either because of fed regulations or his clinic’s refusal to give them out. Good luck 19lin

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Thanks @jimhd. I will ask my pain doctor about the capsaicin treatment at my next visit. If this continues to work I much prefer external to internal extra pain relief. So far, so good. Of course, I have started PT now and I'm feeling more pain now. They told me to stop doing certain exercises as soon as I feel pain. I will also ask about lidocaine patches. I used those a few years ago when a friend of my brother gave him a bunch to give me. They were prescription strength I think, but I don't know for sure. They helped a little before I had my surgery. I was in a great deal of pain at the time. Gail

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19lin | @19lin | Feb 22, 2017
In reply to @sutherlin "Reading everyone's posts about chronic pain and I have degenerative disc disease in the L2-L3 and..." + (show)
@sutherlin

Reading everyone's posts about chronic pain and I have degenerative disc disease in the L2-L3 and L4-L5 but have a Harrington Rod in my back that was in for scoliosis almost 40 years ago and I believe the reason I'm in so much pain and in those areas is because L2-L5 are not part of the fusion and are taking the brunt of everything. I just had a SPECT CT Scan which confirmed the inflammation and now I'm having an MRI done today because the only thing left is surgery. What kind I don't know, waiting to see what the MRI says and speak with the surgeon. Steroid shots, don't work, did chiropractor stretching table, ozone shots, numbing shots and nothing helps. Guarantee you I'm over the pain. I can't even walk a block and I need to sit but anymore sitting doesn't even ease the pain. Can't take it much longer. Hopefully, they will figure something out, but I was told the rod will cause some distortion in the MRI readings and I can assure you, because I'm doing this without drugs and being claustraphobic that if they tell me they couldn't tell for sure because of the distortion, this girl is going to come uncorked!!!!! I wish I could find something to at least ease the pain, but so far nothing. I had my surgery done at the Mayo Clinic in Minnesota in 1977. I don't think that I would last this long or something or they just didn't know what the long stretch with this rod would do. I would be dead if I hadn't done the surgery as the curve was large enough to be shoving organs out of place and giving me a heart murmur. Hope everyone with chronic pain finds the relief they are looking for.

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@sutherlin Thanks, relief is all I want and I hope the next surgery is the right one and last one for you. Good Luck. 19lin

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edda | @edda | Feb 22, 2017

I am new to the group
I have chronic nerve pain in my head, going down to my stomach. Had several ER visits, but nothing showed up.
This has made me cancel a lot of dates with friends (I am married) so I meant plans with friends of mine. Used to be very popular and liked going to concerts, museums and cooking classes. Just mentioned that, to show, it is really interfering with my life
Has anybody experienced this kind of pain? Has Lyrica helped? Or Norco?
Help, I am turning into a nervous hermit.
Never knowing, when the next attack occurs. Getting nervous about hair appointments to keep
Never had depressions, but heading in that direction.

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1 reply
Jen, Alumna Mentor | @sandytoes14 | Feb 22, 2017
In reply to @edda "I am new to the group I have chronic nerve pain in my head, going down..." + (show)
@edda

I am new to the group
I have chronic nerve pain in my head, going down to my stomach. Had several ER visits, but nothing showed up.
This has made me cancel a lot of dates with friends (I am married) so I meant plans with friends of mine. Used to be very popular and liked going to concerts, museums and cooking classes. Just mentioned that, to show, it is really interfering with my life
Has anybody experienced this kind of pain? Has Lyrica helped? Or Norco?
Help, I am turning into a nervous hermit.
Never knowing, when the next attack occurs. Getting nervous about hair appointments to keep
Never had depressions, but heading in that direction.

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@edda Wecome to Connect! I'm sorry that the visits to the ER did not find a reason for your pain. One of the conditions I am thinking of is Trigeminal Neuralgia which you can read more about here: http://mayocl.in/1Goy1hI
There is a group discussion here: http://mayocl.in/2bVAIAl

I'd also like to introduce you to some members who discuss their concerns and solutions about depression. @amberpep @johnhans and @gailb They are often found in the Mental Health area of Connect http://mayocl.in/2lpP4h9

Does this sound like the pain you are having? Would you share with us what tests you have done?

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19lin | @19lin | Feb 22, 2017

@kelseydm I have a question for you or anyone that has a better memory than mine. I thought I read in someone's reply about a treatment involving a new medication that I believe started with K.... It could be used to treat neurological disorders (I think) But it has to be given by an anesthesiologist over a period of time, I think it was a week. I really wish I would have saved that article. I know this is pretty sketchy. One of the conditions I was born with is a form of dyslexia so spelling and grammar are not my strong suits. If you have any idea what this medication might be please let me know. Thank you, 19lin.

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4 replies
Jen, Alumna Mentor | @sandytoes14 | Feb 22, 2017
In reply to @19lin "@kelseydm I have a question for you or anyone that has a better memory than mine...." + (show)
@19lin

@kelseydm I have a question for you or anyone that has a better memory than mine. I thought I read in someone's reply about a treatment involving a new medication that I believe started with K.... It could be used to treat neurological disorders (I think) But it has to be given by an anesthesiologist over a period of time, I think it was a week. I really wish I would have saved that article. I know this is pretty sketchy. One of the conditions I was born with is a form of dyslexia so spelling and grammar are not my strong suits. If you have any idea what this medication might be please let me know. Thank you, 19lin.

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Hello @19lin I will do some research to see if I can find the article you recall while we wait, Perhaps @JustinMcClanahan and other and some of our other members will jump in here.

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leh09 | @leh09 | Feb 22, 2017
In reply to @19lin "@kelseydm I have a question for you or anyone that has a better memory than mine...." + (show)
@19lin

@kelseydm I have a question for you or anyone that has a better memory than mine. I thought I read in someone's reply about a treatment involving a new medication that I believe started with K.... It could be used to treat neurological disorders (I think) But it has to be given by an anesthesiologist over a period of time, I think it was a week. I really wish I would have saved that article. I know this is pretty sketchy. One of the conditions I was born with is a form of dyslexia so spelling and grammar are not my strong suits. If you have any idea what this medication might be please let me know. Thank you, 19lin.

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Ketamine?

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