1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

bustrbrwn22 | @bustrbrwn22 | Sep 10, 2020
In reply to @jimhd "@bustrbrwn22 @catharbert I tried Lyrica 5 years ago, and was starting to have relief from my..." + (show)
@jimhd

@bustrbrwn22 @catharbert I tried Lyrica 5 years ago, and was starting to have relief from my pain, but I had a bad reaction to it and had to be in the hospital for a few days. Bummner that I couldn't take it. I was incoherent, no memory, couldn't form a complete sentence, dizzy, heart went into a bad rhythm in the ER.

Weight gain is no trivial issue, whether it's from poor diet or from a medication. Back in 2004, I was trying to find an antidepressant, testing one after another for 6 weeks, and I think it was Lexapro that made me hungry all the time and I gained 15+ pounds. Another one made me very suicidal, on the exact shedule in the list of warnings. Not good, as I was suicidal to begin with.

It's been around 5 or 6 years since my last OD. I know people don't like to hear what my first thought was when I woke up, but it was, "I'm such a failure. I can't even get suicide right!" That's a thought that's hard to keep filed away in a locked drawer. It resurfaces periodically. I don't feel at risk, but suicidal thoughts tend to ride piggyback on depression and anxiety. I hope that you're at a safe place now.

Jim

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@jimhd thanks for sharing. Suicide is a daily desire so I have to work hard to remember what I should live for.

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2 replies
mayofeb2020 | @mayofeb2020 | Sep 10, 2020
In reply to @bustrbrwn22 "@helennicola @jesfactsmon Do the injections work and do you need multiples in a compressed timeframe? Is..." + (show)
@bustrbrwn22

@helennicola @jesfactsmon Do the injections work and do you need multiples in a compressed timeframe? Is a cortisone injection the same as a steroid injection. Sorry for my lack of knowledge and thanks for your patience explaining

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@helennicola. @bustrbrwn22. I had hip bursitis last November and was given a cortisone shot. i have another flare up now, have to get referral to my ortho doctor. How often do you have the shot? The shot i had last year didn't really do much for me. I only have one shot then.

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1 reply
Hank | @jesfactsmon | Sep 10, 2020
In reply to @avmcbellar "@jesfactsmon Hank, absolutely you can use my name. Don’t mind at all. I will do the..." + (show)
@avmcbellar

@jesfactsmon Hank, absolutely you can use my name. Don’t mind at all. I will do the same....use the tea when I start feeling the headache coming on. I figured I am do for one soon. It is worth a try. Who knows it maybe a combination of my brain healing and misalignment of my eyes. I can feel It when my brain makes new connections. It happened more often, of course, in the beginning. The headaches were twice weekly. Now I can understand why the doctors In the hospital gave me coffee daily to drink. It was OK because my blood pressure was low( thanks to my diet and exercise). At discharge I was given a prescription for a pain killer which I never filled. At home I thought the caffeine may have been part to blame for the headache. I did not make coffee a habit in order to avoid any caffeine withdrawal symptoms. I even tried hot black tea instead but, nonetheless it made no difference.

The herbal tea is worth a shot. It certainly has a lot of ingredients. Never tried those in combination. Glad Linda has found some relief through the tea. Beats the OTC pain killers. Good thing she cannot take them. I don’t use those either.

I believe barometric pressure can be the cause of many things. I never researched it. Years ago, my OBGYN doctor told me that most babies were delivered during a snow storm(it was winter then). I didn’t give that comment much attention but sure enough my daughter was born during a snow storm.

Thanks for her recipe. I will try it iced and let you know if it helps. Toni

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@avmcbellar Great Toni, just be careful not to use too much in a single cup, it is strong. Hank

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3 replies
helennicola | @helennicola | Sep 10, 2020
In reply to @bustrbrwn22 "@helennicola @jesfactsmon Do the injections work and do you need multiples in a compressed timeframe? Is..." + (show)
@bustrbrwn22

@helennicola @jesfactsmon Do the injections work and do you need multiples in a compressed timeframe? Is a cortisone injection the same as a steroid injection. Sorry for my lack of knowledge and thanks for your patience explaining

Jump to this post

Bustrbrwn, there may be a few types of steroids but cortisone is one. I have had some injections that worked and some that didn’t. I think it is important that the dr. gets the exact site correctly. I had one done for chronic neck pain which did nothing, one for hip pain which lasted 2 yrs. then another which did nothing, it was injected in a different location, I then had a hip replacement. I had 2 shots for plantar fasciitis which did nothing, switched drs. and got another which was a life saver. I had one for lower back pain which is still working after 2 yrs; I will be getting one for a stubborn case of hip bursitis and am confident that one will do the trick. Hope that helps. Helen

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Hank | @jesfactsmon | Sep 10, 2020
In reply to @jimhd "@bustrbrwn22 @catharbert I tried Lyrica 5 years ago, and was starting to have relief from my..." + (show)
@jimhd

@bustrbrwn22 @catharbert I tried Lyrica 5 years ago, and was starting to have relief from my pain, but I had a bad reaction to it and had to be in the hospital for a few days. Bummner that I couldn't take it. I was incoherent, no memory, couldn't form a complete sentence, dizzy, heart went into a bad rhythm in the ER.

Weight gain is no trivial issue, whether it's from poor diet or from a medication. Back in 2004, I was trying to find an antidepressant, testing one after another for 6 weeks, and I think it was Lexapro that made me hungry all the time and I gained 15+ pounds. Another one made me very suicidal, on the exact shedule in the list of warnings. Not good, as I was suicidal to begin with.

It's been around 5 or 6 years since my last OD. I know people don't like to hear what my first thought was when I woke up, but it was, "I'm such a failure. I can't even get suicide right!" That's a thought that's hard to keep filed away in a locked drawer. It resurfaces periodically. I don't feel at risk, but suicidal thoughts tend to ride piggyback on depression and anxiety. I hope that you're at a safe place now.

Jim

Jump to this post

@jimhd @bustrbrwn22
Life, for people in pain, constant, relentless pain, is an endless no-win struggle. Having been there once in my life only, I can nevertheless remember the sense I had of feeling I had no options, nowhere to turn for relief from my emotional pain and depression, it dogged me every day, daytime and nighttime. The only escape I got was my 12-14 hours of sleep each night. It's strange, normally I would feel like I wanted to continue, wanted to make it to the next day. But then I had a few nights where I was not so sure (but, I never actually acted, somewhat because I wasn't sure how to procure a gun, thinking that was the way to do it). I do not envy someone in that mode. But to you two in particular I would say, simply, remember you have friends here who want to see you on that next day, want to know your struggles as much as you can reveal. I remember the one thing that kept me from the brink when I was the closest was thinking about how I would not get to see my little sister again, her sweet face. That pulled me back I think.

I am not presuming at all that I can say anything to help someone who is on the brink. I nevertheless do care. Hank

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1 reply
helennicola | @helennicola | Sep 10, 2020
In reply to @mayofeb2020 "@helennicola. @bustrbrwn22. I had hip bursitis last November and was given a cortisone shot. i have..." + (show)
@mayofeb2020

@helennicola. @bustrbrwn22. I had hip bursitis last November and was given a cortisone shot. i have another flare up now, have to get referral to my ortho doctor. How often do you have the shot? The shot i had last year didn't really do much for me. I only have one shot then.

Jump to this post

I’m hoping the one I am going to get will last for while, I have had this bursitis for 6 months and have had P/T, do exercises, use ice and it keeps coming back. It’s worse at night and necessitates using some type of pain relief: lidocaine gel, patches, Aleve, etc. Helen

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 10, 2020

Hi all,
I've noticed a wide variety of related topics being discussed over the past few days. I encourage you to occasionally review the Group Directory https://connect.mayoclinic.org/groups/

There are over 65 groups on Mayo Clinic Connect where people are talking about the things that matter to you. Relevant to recent posts here, I'd like to highlight a few that may interest you:

- Bones, Joints & Muscles https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/
Many discussions about osteoporosis and bone health like this one "Treating Osteoporosis" https://connect.mayoclinic.org/discussion/hi-im-new-to-the-site-and-am-interested-in-treating-osteoperosis/

- Chronic Pain
You'll find discussions about headaches and migraines, hip pain, bursitis and much more.

- Depression & Anxiety https://connect.mayoclinic.org/group/depression-anxiety/

- Epilepsy & Seizures https://connect.mayoclinic.org/group/epilepsy-2bb359/

- Joint Replacements https://connect.mayoclinic.org/group/joint-replacements/

- Sleep Health https://connect.mayoclinic.org/group/sleep-health/

- Spine Health https://connect.mayoclinic.org/group/spine-health/

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2 replies
mayofeb2020 | @mayofeb2020 | Sep 10, 2020
In reply to @helennicola "I’m hoping the one I am going to get will last for while, I have had..." + (show)
@helennicola

I’m hoping the one I am going to get will last for while, I have had this bursitis for 6 months and have had P/T, do exercises, use ice and it keeps coming back. It’s worse at night and necessitates using some type of pain relief: lidocaine gel, patches, Aleve, etc. Helen

Jump to this post

@helennicola. Yup. That's me. At least it doesn't bother me when i sleep. I am a side sleeper and i can't sleep on the side with the bursitis. I've done and used all the stuff you mentioned. Hope my ortho doctor will help. I'm not into shots but I am willing to take it if it will give me some relief....

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 10, 2020
In reply to @colleenyoung "Hi all, I've noticed a wide variety of related topics being discussed over the past few..." + (show)
@colleenyoung

Hi all,
I've noticed a wide variety of related topics being discussed over the past few days. I encourage you to occasionally review the Group Directory https://connect.mayoclinic.org/groups/

There are over 65 groups on Mayo Clinic Connect where people are talking about the things that matter to you. Relevant to recent posts here, I'd like to highlight a few that may interest you:

- Bones, Joints & Muscles https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/
Many discussions about osteoporosis and bone health like this one "Treating Osteoporosis" https://connect.mayoclinic.org/discussion/hi-im-new-to-the-site-and-am-interested-in-treating-osteoperosis/

- Chronic Pain
You'll find discussions about headaches and migraines, hip pain, bursitis and much more.

- Depression & Anxiety https://connect.mayoclinic.org/group/depression-anxiety/

- Epilepsy & Seizures https://connect.mayoclinic.org/group/epilepsy-2bb359/

- Joint Replacements https://connect.mayoclinic.org/group/joint-replacements/

- Sleep Health https://connect.mayoclinic.org/group/sleep-health/

- Spine Health https://connect.mayoclinic.org/group/spine-health/

Jump to this post

Hi Colleen! @colleenyoung. I'm hoping members posting here in the Living with Neuropathy discussion that really do not have neuropathy or that may have other related chronic pain symptoms will see your post and be able to connect with other members that share their condition and symptoms in a better suited discussion for them so they can exchange experiences and learn from each other.

And for those folks that love to talk (including me! - Hey, how about those Chicago Cubs...oh, forgot, it's football season 😂) there is another one of my favorite groups to check out the existing discussions, find a discussion or post a new discussion and talk away...

Just Want to Talk Group -- https://connect.mayoclinic.org/group/other/tab/discussions/

Happy Thursday!!

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2 replies
helennicola | @helennicola | Sep 10, 2020
In reply to @mayofeb2020 "@helennicola. Yup. That's me. At least it doesn't bother me when i sleep. I am a..." + (show)
@mayofeb2020

@helennicola. Yup. That's me. At least it doesn't bother me when i sleep. I am a side sleeper and i can't sleep on the side with the bursitis. I've done and used all the stuff you mentioned. Hope my ortho doctor will help. I'm not into shots but I am willing to take it if it will give me some relief....

Jump to this post

mayofeb, sleeping is when it bothers me the most, right side, left side or back sleeping all cause pain which I can’t figure out. Sitting is no problem, walking for more than 2 hrs. causes discomfort. I’ll let you know how I fare with the shot which I’m not sure when that will be, maybe another week. This also seems to be idiopathic as it began suddenly for no apparent reason! Helen

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