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.

@jimhd

I’ve been having a number of tests done lately for more than one issue. The genetic analysis reported that Huntington’s Disease is very unlikely. I haven’t discussed it with a doctor yet. My anxiety level dropped several notches when I saw the report. I like that most of my test results get posted online, so I can see them much sooner than by the USPS. I don’t know why I was anemic, but the doctor had me start taking iron, and the hemoglobin levels went up to normal. I’m glad for that, but I’d still like to know why it dropped in the first place.

The speech therapist has given me some tongue exercises – I never thought I’d have to exercise my tongue – and I’ll see the ENT doctor for a follow-up to see if they’ve helped. If they don’t, I’ll be changing to soft foods some day, and the next step after that is a feeding tube. I hope that’s many years in the future.

I’ve had buzzing in my head, accompanied by dizziness, for a number of years, lasting for a very short time, and happening totally at random, out of the blue. Last Tuesday, August 15, it started at around 5 pm, and went continuously for a week, then tapered off to only most of the time. I have an appointment with a doctor next week to begin the search for a cause. For the first time, nausea has been part of the mix. Yuck!

Peripheral neuropathy – since the spinal cord stimulator implant, the pain has gone down to a 1 or 2, with spikes every once in awhile up to 6. Overall, it’s made a huge improvement in the pain. I tapered off Cymbalta, which the pain specialist thought might help the pain. I’m not sure that it did anything at all. I’ve also tapered down on MScontin from 30mg twice a day to 15mg twice a day. I think I’ll talk with the pain specialist about that because I feel like I may need just a little more, like 15 and 30. I’ve had the rep from the stimulator company adjust the settings twice, and he’s available to do that anytime I call. My therapist recommended that I not taper any more right now because of the level of my depression. He’s concerned that if the pain returns, it would probably have an effect on the depression, which I don’t need right now. We’ve been working on some tough issues that have affected my life since I was a teenager, and I find that it’s a really long time from one Thursday to the next, when I meet with him.

The ENT doctor recommended that my neurologist get involved in the swallowing issue, and I have an appointment with him next week. It takes me a long time to eat a meal, and sometimes I get tired of eating. At lunch today, I could only eat one of the two small brownies on the plate. I Never turn down dessert, especially if it’s chocolate. I just wanted to be done with eating. I take a small bite of food, chew on it awhile, then prepare to swallow it, and then after the food finally gets into the esophagus, I drink a sip of liquid to help it keep going. After it feels like it’s cleared my esophagus, I take the next bite, and start the process again. The speech therapist is concerned that I won’t eat enough to maintain my weight, which is in the normal range, but close to underweight. It takes me back to my college days, when I tried everything to gain weight. I overcame that problem over the years, and in 2015, I went on a diet, which meant cutting back on desserts and stopping the snacks, and lost 60 lbs in 6 months. That was faster than I had anticipated. Now, I work to stay steady. If I got very sick, and lost much weight, it could become a problem.

Anyway, that’s what I’ve been up to the past few months.

Jim

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I usually get over a hundred Mayo emails per day and watch at least one video, sometimes up to 150 all told. If I don’t want to read them, I just mark them read, or delete them. I usually delete over 1000 emails per day, all told. I don’t mind deleting all I do not wish to read. I figure it all helps to keep the internet free. You might unsubscribe from those threads you don’t want to read. The only ones I am tempted to do that to are the MJ pushers.

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@oldkarl

Peach, the real downer here is that the closest real hospital with pain management, etc, is almost a hundred miles away. And we have a lot of speeders here, not real tourists, but folks who think they can drive 80 mph along the coast on roads built for 35 mph. Then they pile up on a 15 mph curve, at one of our most beautiful spots, and complain about the bad roads and slow drivers. If they want to drive 80, they should go over to I-5 which runs from Vancouver BC to San Diego.

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Hi John, I probably would get on with your wife!  I'm not necessarily gregarious, but I think groups can be so therapeutic.
We are quite involved with our Church groups.  I love singing in the Choir, tho I'm not the best singer any more!  Music is very soothing to me.
We also have rescue cats and they provide us with much affection and humor!
@marylou705

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@jimhd

I’ve been having a number of tests done lately for more than one issue. The genetic analysis reported that Huntington’s Disease is very unlikely. I haven’t discussed it with a doctor yet. My anxiety level dropped several notches when I saw the report. I like that most of my test results get posted online, so I can see them much sooner than by the USPS. I don’t know why I was anemic, but the doctor had me start taking iron, and the hemoglobin levels went up to normal. I’m glad for that, but I’d still like to know why it dropped in the first place.

The speech therapist has given me some tongue exercises – I never thought I’d have to exercise my tongue – and I’ll see the ENT doctor for a follow-up to see if they’ve helped. If they don’t, I’ll be changing to soft foods some day, and the next step after that is a feeding tube. I hope that’s many years in the future.

I’ve had buzzing in my head, accompanied by dizziness, for a number of years, lasting for a very short time, and happening totally at random, out of the blue. Last Tuesday, August 15, it started at around 5 pm, and went continuously for a week, then tapered off to only most of the time. I have an appointment with a doctor next week to begin the search for a cause. For the first time, nausea has been part of the mix. Yuck!

Peripheral neuropathy – since the spinal cord stimulator implant, the pain has gone down to a 1 or 2, with spikes every once in awhile up to 6. Overall, it’s made a huge improvement in the pain. I tapered off Cymbalta, which the pain specialist thought might help the pain. I’m not sure that it did anything at all. I’ve also tapered down on MScontin from 30mg twice a day to 15mg twice a day. I think I’ll talk with the pain specialist about that because I feel like I may need just a little more, like 15 and 30. I’ve had the rep from the stimulator company adjust the settings twice, and he’s available to do that anytime I call. My therapist recommended that I not taper any more right now because of the level of my depression. He’s concerned that if the pain returns, it would probably have an effect on the depression, which I don’t need right now. We’ve been working on some tough issues that have affected my life since I was a teenager, and I find that it’s a really long time from one Thursday to the next, when I meet with him.

The ENT doctor recommended that my neurologist get involved in the swallowing issue, and I have an appointment with him next week. It takes me a long time to eat a meal, and sometimes I get tired of eating. At lunch today, I could only eat one of the two small brownies on the plate. I Never turn down dessert, especially if it’s chocolate. I just wanted to be done with eating. I take a small bite of food, chew on it awhile, then prepare to swallow it, and then after the food finally gets into the esophagus, I drink a sip of liquid to help it keep going. After it feels like it’s cleared my esophagus, I take the next bite, and start the process again. The speech therapist is concerned that I won’t eat enough to maintain my weight, which is in the normal range, but close to underweight. It takes me back to my college days, when I tried everything to gain weight. I overcame that problem over the years, and in 2015, I went on a diet, which meant cutting back on desserts and stopping the snacks, and lost 60 lbs in 6 months. That was faster than I had anticipated. Now, I work to stay steady. If I got very sick, and lost much weight, it could become a problem.

Anyway, that’s what I’ve been up to the past few months.

Jim

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@peach414145

Barb, I stopped following the groups that I was only marginally interested in. I don’t check my email every day, so the messages can really build up. Most of them, I glance through quickly and delete them. I respond to a small percentage.

Jim

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@jimhd

I’ve been having a number of tests done lately for more than one issue. The genetic analysis reported that Huntington’s Disease is very unlikely. I haven’t discussed it with a doctor yet. My anxiety level dropped several notches when I saw the report. I like that most of my test results get posted online, so I can see them much sooner than by the USPS. I don’t know why I was anemic, but the doctor had me start taking iron, and the hemoglobin levels went up to normal. I’m glad for that, but I’d still like to know why it dropped in the first place.

The speech therapist has given me some tongue exercises – I never thought I’d have to exercise my tongue – and I’ll see the ENT doctor for a follow-up to see if they’ve helped. If they don’t, I’ll be changing to soft foods some day, and the next step after that is a feeding tube. I hope that’s many years in the future.

I’ve had buzzing in my head, accompanied by dizziness, for a number of years, lasting for a very short time, and happening totally at random, out of the blue. Last Tuesday, August 15, it started at around 5 pm, and went continuously for a week, then tapered off to only most of the time. I have an appointment with a doctor next week to begin the search for a cause. For the first time, nausea has been part of the mix. Yuck!

Peripheral neuropathy – since the spinal cord stimulator implant, the pain has gone down to a 1 or 2, with spikes every once in awhile up to 6. Overall, it’s made a huge improvement in the pain. I tapered off Cymbalta, which the pain specialist thought might help the pain. I’m not sure that it did anything at all. I’ve also tapered down on MScontin from 30mg twice a day to 15mg twice a day. I think I’ll talk with the pain specialist about that because I feel like I may need just a little more, like 15 and 30. I’ve had the rep from the stimulator company adjust the settings twice, and he’s available to do that anytime I call. My therapist recommended that I not taper any more right now because of the level of my depression. He’s concerned that if the pain returns, it would probably have an effect on the depression, which I don’t need right now. We’ve been working on some tough issues that have affected my life since I was a teenager, and I find that it’s a really long time from one Thursday to the next, when I meet with him.

The ENT doctor recommended that my neurologist get involved in the swallowing issue, and I have an appointment with him next week. It takes me a long time to eat a meal, and sometimes I get tired of eating. At lunch today, I could only eat one of the two small brownies on the plate. I Never turn down dessert, especially if it’s chocolate. I just wanted to be done with eating. I take a small bite of food, chew on it awhile, then prepare to swallow it, and then after the food finally gets into the esophagus, I drink a sip of liquid to help it keep going. After it feels like it’s cleared my esophagus, I take the next bite, and start the process again. The speech therapist is concerned that I won’t eat enough to maintain my weight, which is in the normal range, but close to underweight. It takes me back to my college days, when I tried everything to gain weight. I overcame that problem over the years, and in 2015, I went on a diet, which meant cutting back on desserts and stopping the snacks, and lost 60 lbs in 6 months. That was faster than I had anticipated. Now, I work to stay steady. If I got very sick, and lost much weight, it could become a problem.

Anyway, that’s what I’ve been up to the past few months.

Jim

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Hi @peach414144, I am sorry you are getting too many emails from Connect but it’s an easy thing to fix. To turn off email notifications, you can click the unsubscribe at the bottom of the email or you can click your Profile in the upper right corner of the screen and select Account Settings. Then go to the bottom and find Email Notifications. There you can select/disable which notifications you want to have sent to you (or not!).

John

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@jimhd

I’ve been having a number of tests done lately for more than one issue. The genetic analysis reported that Huntington’s Disease is very unlikely. I haven’t discussed it with a doctor yet. My anxiety level dropped several notches when I saw the report. I like that most of my test results get posted online, so I can see them much sooner than by the USPS. I don’t know why I was anemic, but the doctor had me start taking iron, and the hemoglobin levels went up to normal. I’m glad for that, but I’d still like to know why it dropped in the first place.

The speech therapist has given me some tongue exercises – I never thought I’d have to exercise my tongue – and I’ll see the ENT doctor for a follow-up to see if they’ve helped. If they don’t, I’ll be changing to soft foods some day, and the next step after that is a feeding tube. I hope that’s many years in the future.

I’ve had buzzing in my head, accompanied by dizziness, for a number of years, lasting for a very short time, and happening totally at random, out of the blue. Last Tuesday, August 15, it started at around 5 pm, and went continuously for a week, then tapered off to only most of the time. I have an appointment with a doctor next week to begin the search for a cause. For the first time, nausea has been part of the mix. Yuck!

Peripheral neuropathy – since the spinal cord stimulator implant, the pain has gone down to a 1 or 2, with spikes every once in awhile up to 6. Overall, it’s made a huge improvement in the pain. I tapered off Cymbalta, which the pain specialist thought might help the pain. I’m not sure that it did anything at all. I’ve also tapered down on MScontin from 30mg twice a day to 15mg twice a day. I think I’ll talk with the pain specialist about that because I feel like I may need just a little more, like 15 and 30. I’ve had the rep from the stimulator company adjust the settings twice, and he’s available to do that anytime I call. My therapist recommended that I not taper any more right now because of the level of my depression. He’s concerned that if the pain returns, it would probably have an effect on the depression, which I don’t need right now. We’ve been working on some tough issues that have affected my life since I was a teenager, and I find that it’s a really long time from one Thursday to the next, when I meet with him.

The ENT doctor recommended that my neurologist get involved in the swallowing issue, and I have an appointment with him next week. It takes me a long time to eat a meal, and sometimes I get tired of eating. At lunch today, I could only eat one of the two small brownies on the plate. I Never turn down dessert, especially if it’s chocolate. I just wanted to be done with eating. I take a small bite of food, chew on it awhile, then prepare to swallow it, and then after the food finally gets into the esophagus, I drink a sip of liquid to help it keep going. After it feels like it’s cleared my esophagus, I take the next bite, and start the process again. The speech therapist is concerned that I won’t eat enough to maintain my weight, which is in the normal range, but close to underweight. It takes me back to my college days, when I tried everything to gain weight. I overcame that problem over the years, and in 2015, I went on a diet, which meant cutting back on desserts and stopping the snacks, and lost 60 lbs in 6 months. That was faster than I had anticipated. Now, I work to stay steady. If I got very sick, and lost much weight, it could become a problem.

Anyway, that’s what I’ve been up to the past few months.

Jim

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thank you but at age 80 i must have dementia. cannot keep up with this new technology. perhaps if i were born in the fifties instead of the thirties i would be more able to keep up. so,,,, i will delete, delete, delete. (as i have said before, i need a five year old to help me. thanks again patience, patience, patience.

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@bellavista

I am new to the chronic pain. I began having hip pain two years ago and found out I have scoliosis. After physical therapy I improved for over a year. It did not go away but stretching occasionally helped and I functioned well including playing golf. Now my pain is in my lower back and mostly in my legs and left trochanter. I am currently back in PT and hoping that helps again, but I am not as hopeful this time. I am a nurse and follow several women who have similar problems and they are going through injections and misery. I am hoping I can find some other information not only for myself but for these ladies.

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Hello @bellavista,

I would like to add my welcome to @jimhd‘s. You mentioned you have scoliosis, you may want to meet many of our Connect members discussing scoliosis, and you can do that by checking out the following discussions, just click on the link, https://connect.mayoclinic.org/discussion/scoliosis-introduce-yourself/. I look forward to getting to learn more about you.

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@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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So where do I go now and how do I get emails just from chronic pain and I sent a long reply to the wrong site, the site which they want to talk and post pictures of their pets. I don’t want to have to write the whole reply again but I would like to post it to this site?Marie (MARIELD65)

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@jimhd

I’ve been having a number of tests done lately for more than one issue. The genetic analysis reported that Huntington’s Disease is very unlikely. I haven’t discussed it with a doctor yet. My anxiety level dropped several notches when I saw the report. I like that most of my test results get posted online, so I can see them much sooner than by the USPS. I don’t know why I was anemic, but the doctor had me start taking iron, and the hemoglobin levels went up to normal. I’m glad for that, but I’d still like to know why it dropped in the first place.

The speech therapist has given me some tongue exercises – I never thought I’d have to exercise my tongue – and I’ll see the ENT doctor for a follow-up to see if they’ve helped. If they don’t, I’ll be changing to soft foods some day, and the next step after that is a feeding tube. I hope that’s many years in the future.

I’ve had buzzing in my head, accompanied by dizziness, for a number of years, lasting for a very short time, and happening totally at random, out of the blue. Last Tuesday, August 15, it started at around 5 pm, and went continuously for a week, then tapered off to only most of the time. I have an appointment with a doctor next week to begin the search for a cause. For the first time, nausea has been part of the mix. Yuck!

Peripheral neuropathy – since the spinal cord stimulator implant, the pain has gone down to a 1 or 2, with spikes every once in awhile up to 6. Overall, it’s made a huge improvement in the pain. I tapered off Cymbalta, which the pain specialist thought might help the pain. I’m not sure that it did anything at all. I’ve also tapered down on MScontin from 30mg twice a day to 15mg twice a day. I think I’ll talk with the pain specialist about that because I feel like I may need just a little more, like 15 and 30. I’ve had the rep from the stimulator company adjust the settings twice, and he’s available to do that anytime I call. My therapist recommended that I not taper any more right now because of the level of my depression. He’s concerned that if the pain returns, it would probably have an effect on the depression, which I don’t need right now. We’ve been working on some tough issues that have affected my life since I was a teenager, and I find that it’s a really long time from one Thursday to the next, when I meet with him.

The ENT doctor recommended that my neurologist get involved in the swallowing issue, and I have an appointment with him next week. It takes me a long time to eat a meal, and sometimes I get tired of eating. At lunch today, I could only eat one of the two small brownies on the plate. I Never turn down dessert, especially if it’s chocolate. I just wanted to be done with eating. I take a small bite of food, chew on it awhile, then prepare to swallow it, and then after the food finally gets into the esophagus, I drink a sip of liquid to help it keep going. After it feels like it’s cleared my esophagus, I take the next bite, and start the process again. The speech therapist is concerned that I won’t eat enough to maintain my weight, which is in the normal range, but close to underweight. It takes me back to my college days, when I tried everything to gain weight. I overcame that problem over the years, and in 2015, I went on a diet, which meant cutting back on desserts and stopping the snacks, and lost 60 lbs in 6 months. That was faster than I had anticipated. Now, I work to stay steady. If I got very sick, and lost much weight, it could become a problem.

Anyway, that’s what I’ve been up to the past few months.

Jim

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@jimhd That’s great that Huntington’s is so unlikely but I am sorry to hear about your other problems. I hope they will get resolved as much as possible, as soon as possible. You sound like you are working at staying positive despite everything and I think that is really paramount.
JK

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@oldkarl

Peach, the real downer here is that the closest real hospital with pain management, etc, is almost a hundred miles away. And we have a lot of speeders here, not real tourists, but folks who think they can drive 80 mph along the coast on roads built for 35 mph. Then they pile up on a 15 mph curve, at one of our most beautiful spots, and complain about the bad roads and slow drivers. If they want to drive 80, they should go over to I-5 which runs from Vancouver BC to San Diego.

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@johnbishop I checked my area on one of the links that someone posted and there are some participating places not far but unfortunately not the health club I go to. The pool is important to me and none of the others close by at all have a pool. If I have to go far I know I will be less apt to go at all.
JK

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@oldkarl

Peach, the real downer here is that the closest real hospital with pain management, etc, is almost a hundred miles away. And we have a lot of speeders here, not real tourists, but folks who think they can drive 80 mph along the coast on roads built for 35 mph. Then they pile up on a 15 mph curve, at one of our most beautiful spots, and complain about the bad roads and slow drivers. If they want to drive 80, they should go over to I-5 which runs from Vancouver BC to San Diego.

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@marylou705 Hi Marylou, I agree with you, it can really help if you are in a good group, that gives it a social component and makes it fun. I love the other people who go to my water aerobics, they are really a great group of women — and a couple of men who also seem nice. When I do not make to the class in the morning I do go by myself in the afternoon and once I get going it’s fine but getting myself there is a challenge.
JK

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@oldkarl

Peach, the real downer here is that the closest real hospital with pain management, etc, is almost a hundred miles away. And we have a lot of speeders here, not real tourists, but folks who think they can drive 80 mph along the coast on roads built for 35 mph. Then they pile up on a 15 mph curve, at one of our most beautiful spots, and complain about the bad roads and slow drivers. If they want to drive 80, they should go over to I-5 which runs from Vancouver BC to San Diego.

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@johnbishop John, interestingly I was much more of a hermit myself. I joined my club because I knew I needed exercise and exercise in the water has much less impact on your knees. Over time I found myself really enjoying the other people. I am not friends with any beyond my club but enjoy them there. I also socialize less than many because I really have to pay attention to the leader and watch her since my hearing impairment makes it more difficult for me, and then after class many of them congregate in the hot tub but I continue exercising in the pool for an additional half hour to 45 minutes.
JK

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@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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I have chronic, lower back and knee paring. I also have plantar fasciitis, which has lasted for more than a year, despite several interventions.

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@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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Hello @marield65, I think you may have selected “Follow” for the Chronic Pain Group which is going to give you an email notification every time someone posts to any discussion under the Chronic Pain Group. If this is the case, go to the top of this screen and click the Group name and if it shows Following just click on the word Following and select to unfollow the group and then click Update.

Then locate any discussions under the Chronic Pain Group that you want to receive notifications from and click on Follow in the Discussion description area at the top of each discussion. This will change +Follow to +Following.

You can see all of the Groups and discussions under the groups that you are following by clicking on your Connect username (@marield65) then clicking on Account Settings. Once in your Account Settings you can scroll to the bottom to find Email Notifications and choose to unfollow specific discussion or just Disable all email notifications at the bottom of Account Settings window.

John

Group

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Capture4

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@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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Hello @cwwilliams, Welcome to Mayo Connect. I’m glad you found us! Connect is a great place to share your story, ask questions and learn from other Connect members what they are doing for similar health issues. Can you tell us anymore about the several interventions? Hoping some others will be able to join the discussion and offer some insights or treatments that have helped them.

John

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@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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I’ve had two cortisone shots and pt.

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