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.

@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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@gailb I am sorry for your loss. We never know when will be the last time we see someone so it always wise to leave with good wishes. I agree medicine is as much an art as a science although I doubt most doctors would agree. A friend told me about a person they knew who worked and never complained up until 3 weeks before they died of bone cancer that they did not know about. A neighbor told me his brother complained of back pain for over a year and the doctors could not find the cause of it until he and his wife were on vacation to some British Islands and he had to go to the emergency room there for the pain, they identified his back pain as spinal cancer and he returned home and died within a couple months.
A lot of the time it is just finding the right doctor at the right time. My prayers are with you. 19lin

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@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.

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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Baclafen is a good muscle relaxer, gabapentin is a fair pain reliever for me. I’m on much higher dosage than you. I’ve had 17 neck and back surgeries from 1975 to 2 this
past year.

I found tramadol to be unuseful for me. I had terrible side effects. I’m unable to get morphine I need so I take extra strength acetaminophen with the Baclafen and Gabapenten. This reduces the pain but doesn’t fully take it away.

I use meditation and relaxation techniques to help with the meds. I developed fibromyalgia and autonomic peripheral neuropathy as results of the trauma of the surgeries injuries and broken back and neck. I fell several times in the past year resulting in ruptured discs and two broken necks.

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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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My name is Jeri.

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@kelseydm

@19lin Did they give you any explanation as to why the MRI would have caused the burning sensation up your spine? @leh09 @seanbeck @suebreen54 @ladyjane85 @briansr @salena54 @sharonmay7 have any of you had this experience with an MRI?

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Although I find MRIs unpleasant, I have not experienced anything like that.

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@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.

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 I bought extra strength Capzasin at WalMart and onlline, which is cheaper. Lidocaine 5% cream is rx and very expensive.

Jim

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@jeriliz

My name is Jeri.

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Welcome, Jeri @jeriliz

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@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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@johnnie In what way was the pain clinic helpful? What did you learn that you didn’t already know? Is it all classroom setting?

Jim

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@rsuda

Hi my name is Robin. I am looking for support and can also be supportive to others with chronic pain. I had surgery May of 2016 on the t-9 in my spine for a very large herniated disc. I really think it had been there most of my life. At first I had remarkable pain reduction but in a few months my back burned like a horrible sun burn. I was told it was neuropathy and that my nerves were affected from my back procedure. I have used so much advil and tylenol it was dangerous. I am allergic to most pain pills and break out in hives so stay away form them. I also am a Type 1 diabetic for 35 years so my Dr. really fround on the over the counter meds and put me on Neurontin. I am now on a dose of 300 mg tid. Plus I wear a lidocaine patch. I have done months of Physical therapy with some relief. I am now being seen by pain specialist today for the results of my recent MRI. Yuck
I want to do more activites, walk, play with the kids, enjoy gardening and my pets. I am married but not much fun because every night I sit with an ice bag on my back. Overall I am very happy and continue to do things. My friends and family can tell I hurt and this makes me sad. What do you think? I have never been a support system before but my Nurse Practitioner said to try it. hank you Robin

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@rsuda Robin, I’m so glad you have joined us for support! You will find that this is a very friendly and informative group of people on Connect. I understand when you say you are “married but not much fun” because you sit with an ice pack each night. I actually chuckled at this because I sit at night with a heating pad. In your post, you said you were seeing a pain specialist. Would you be willing to share with us how that meeting went?

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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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@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.

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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@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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@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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@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.

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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@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

Liked by jeriliz

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