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.

helennicola | @helennicola | Sep 9, 2020
In reply to @sunnyflower "Thanks so much Helen! Boy, I am bombarding my Endocrinologist w/ questions. I have been researching..." + (show)
@sunnyflower

Thanks so much Helen! Boy, I am bombarding my Endocrinologist w/ questions. I have been researching these Bisphosphonates since my Endocrinologist at the time, wanted me to take them over 4 years ago. The sied-effects you mentioned were some of the very reasons I declined. But now, my recent bone density scan is so much worse! The risk of breaking bones and ending up in a wheelchair w/ high risk emergency surgery, are higher and worse than the horrible unwanted side-effects unless of course, both femurs break (both can at the same time) and the femoral tumor. Not to mention the way they work on the immune system. They like to say they are not immunosuppressants however I found a Harvard medical journal from 2011 that says they are. The work differently but the outcome is stil the same; increased risk for serious infections.

My husband and I are agonizing over what to do. I've already writtten a lot on the blog about this. I already have joint, muscle and soft tissue pain as well as my neuropathy pain. I can't imagine more and, having to live w/ them for potentially the duration of the medication. One is an injection every 6 months and the other is an IV yearly. Ug.

Is your doctor keeping an eye on routine bone density scans? Are you on a daily steroid? I pray not!!!! They destroy so much in the body. At least they have in mine!

All a quality of life decision. A no-win, the least of two evils. I and some other faithful prayer warriors are praying the Lord gives me direction.

Take the best of care, I really appreciate you!! Sunnyflower.

Jump to this post

Sunny, I stopped getting bone density scans as I refused to take the drugs and instead upped my Vit. D and increased my intake of leafy greens, fruits, etc. I have no idea if my bone density has improved, worsened or stayed the same and I do have osteoporosis in my neck, back and left forearm all originating from old accidents which has worsened with age. I do exercise, eat well and don’t take any drug other than gabapentin so that all helps. I have friends who took the bisphosphonates on their dr.’s rec. and I think they were fine. These decisions are always difficult, I’m sure you’ll make the one that’s right for you. Helen

REPLY
1 reply
mayofeb2020 | @mayofeb2020 | Sep 9, 2020
In reply to @sunnyflower "Thanks so much Helen! Boy, I am bombarding my Endocrinologist w/ questions. I have been researching..." + (show)
@sunnyflower

Thanks so much Helen! Boy, I am bombarding my Endocrinologist w/ questions. I have been researching these Bisphosphonates since my Endocrinologist at the time, wanted me to take them over 4 years ago. The sied-effects you mentioned were some of the very reasons I declined. But now, my recent bone density scan is so much worse! The risk of breaking bones and ending up in a wheelchair w/ high risk emergency surgery, are higher and worse than the horrible unwanted side-effects unless of course, both femurs break (both can at the same time) and the femoral tumor. Not to mention the way they work on the immune system. They like to say they are not immunosuppressants however I found a Harvard medical journal from 2011 that says they are. The work differently but the outcome is stil the same; increased risk for serious infections.

My husband and I are agonizing over what to do. I've already writtten a lot on the blog about this. I already have joint, muscle and soft tissue pain as well as my neuropathy pain. I can't imagine more and, having to live w/ them for potentially the duration of the medication. One is an injection every 6 months and the other is an IV yearly. Ug.

Is your doctor keeping an eye on routine bone density scans? Are you on a daily steroid? I pray not!!!! They destroy so much in the body. At least they have in mine!

All a quality of life decision. A no-win, the least of two evils. I and some other faithful prayer warriors are praying the Lord gives me direction.

Take the best of care, I really appreciate you!! Sunnyflower.

Jump to this post

@sunnyflower.. I took my bone density test a few years ago, and while i was talking to the technician, she told me her mom is a pharmacist and told her Bisphosphonates is a "bad" drug. My doctor prescribed it and i took it for one day. I felt so bad, my chest tightened up and it took a good ten days for it to go away. I told my doctor I'm not taking it. I'm due another bone density test in November, so I am faced with a decision again. I have known people who had been on this for years and still have bone fractures. I read extensively about the drugs and to be honest, they don't have guarantee that i am looking for. Maybe they are just not for me.

REPLY
1 reply
avmcbellar | @avmcbellar | Sep 9, 2020
In reply to @jesfactsmon "@avmcbellar Thanks for mentioning your name Toni. I'll use it from now on if that's okay...." + (show)
@jesfactsmon

@avmcbellar
Thanks for mentioning your name Toni. I'll use it from now on if that's okay.

Linda drinks the tea at the time when the headache becomes a nuisance. Here is how she makes it and uses it:

It comes in one bag. Steep 1/2 bag in a slow rolling boil of about a quart of water for about an hour and a half. That makes a concentrate. She adds some, like an ounce, two or three to a cup and fills rest with water and microwaves.

The tea works almost immediately to cut the pain. It's the only thing we have found for her to cut the headache down at all (she is allergic to all OTC pain killers). It doesn't get rid of it, just makes it tolerable.

Hope you find good luck. This tea has a lot of different stuff in it. The Shifa company is a small one in NYC, and if you go to their own website they show all the different teas they make. Some really interesting kinds, though we have not yet tried any others.

Best, Hank

Jump to this post

@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

REPLY
1 reply
mayofeb2020 | @mayofeb2020 | Sep 9, 2020

@avmcbellar. I used to work with a lady that has migraine all the time. Her remedy was triple shots of espresso every morning. She said that's the only thing that worked.

REPLY
1 reply
sunnyflower | @sunnyflower | Sep 9, 2020
In reply to @mayofeb2020 "@sunnyflower.. I took my bone density test a few years ago, and while i was talking..." + (show)
@mayofeb2020

@sunnyflower.. I took my bone density test a few years ago, and while i was talking to the technician, she told me her mom is a pharmacist and told her Bisphosphonates is a "bad" drug. My doctor prescribed it and i took it for one day. I felt so bad, my chest tightened up and it took a good ten days for it to go away. I told my doctor I'm not taking it. I'm due another bone density test in November, so I am faced with a decision again. I have known people who had been on this for years and still have bone fractures. I read extensively about the drugs and to be honest, they don't have guarantee that i am looking for. Maybe they are just not for me.

Jump to this post

Helen and mayofeb 2020, I am trying to pick my jaw up off the floor and jump start my heart after reading your posts. Thanks so much for sharing with me!! I am blown away by your posts!!!!! May I ask some questions? Please only answer if you are comfortable and if not, no worries. Or, if you prefer, you could answer in a private message. I don't want to make anyone uncomfortable and I don't want to cross andy boundaries.

How young are you beautiful girls?? Have you broken any bones spontaneously aka, not injury/trauma? If so, which bones? Do you take steroids and if so, how many mg. per day and for how long? mayofeb202, which Bisphosphonate did you take?

I think it prudent for me to join the Rheumatology blog. It's going to be hard to keep up here but I want to try. I have so many appointments it's beyond belief but I will try.

Thank you so very much. My husband and I just discussed what you said (no names). We are both taken back. Ug. Take care of yourselves my friends. I would put some cute emoticons but this table won't allow me to do it anymore so hugs to you both!!!! Sunny

REPLY
1 reply
sunnyflower | @sunnyflower | Sep 9, 2020
In reply to @helennicola "Sunny, I stopped getting bone density scans as I refused to take the drugs and instead..." + (show)
@helennicola

Sunny, I stopped getting bone density scans as I refused to take the drugs and instead upped my Vit. D and increased my intake of leafy greens, fruits, etc. I have no idea if my bone density has improved, worsened or stayed the same and I do have osteoporosis in my neck, back and left forearm all originating from old accidents which has worsened with age. I do exercise, eat well and don’t take any drug other than gabapentin so that all helps. I have friends who took the bisphosphonates on their dr.’s rec. and I think they were fine. These decisions are always difficult, I’m sure you’ll make the one that’s right for you. Helen

Jump to this post

Helen, See my reply to mayofeb202

REPLY
1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 10, 2020
In reply to @bustrbrwn22 "I have had huge weight gains with both Lyrica and even more with Seroquel (30 pounds..." + (show)
@bustrbrwn22

I have had huge weight gains with both Lyrica and even more with Seroquel (30 pounds in 1 year). I have always been a size 0 or 2 because I am small boned but this weight is not coming off. I am wearing XXL clothes and feel so disgusted in myself. I am so sorry to waste your time on such a trivial issue but really seriously think before taking these meds

Jump to this post

@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

REPLY
3 replies
avmcbellar | @avmcbellar | Sep 10, 2020
In reply to @mayofeb2020 "@avmcbellar. I used to work with a lady that has migraine all the time. Her remedy..." + (show)
@mayofeb2020

@avmcbellar. I used to work with a lady that has migraine all the time. Her remedy was triple shots of espresso every morning. She said that's the only thing that worked.

Jump to this post

Hi @mayofeb2020 migraines are awful! They can ruin someone’s whole day. I am glad she found a remedy that worked for her. I know a lot of the migraine medications contain high doses of caffeine. In my case I drank coffee but saw no relief. Thank you for thinking of me and forwarding your suggestion. Toni

REPLY
mayofeb2020 | @mayofeb2020 | Sep 10, 2020
In reply to @sunnyflower "Helen and mayofeb 2020, I am trying to pick my jaw up off the floor and..." + (show)
@sunnyflower

Helen and mayofeb 2020, I am trying to pick my jaw up off the floor and jump start my heart after reading your posts. Thanks so much for sharing with me!! I am blown away by your posts!!!!! May I ask some questions? Please only answer if you are comfortable and if not, no worries. Or, if you prefer, you could answer in a private message. I don't want to make anyone uncomfortable and I don't want to cross andy boundaries.

How young are you beautiful girls?? Have you broken any bones spontaneously aka, not injury/trauma? If so, which bones? Do you take steroids and if so, how many mg. per day and for how long? mayofeb202, which Bisphosphonate did you take?

I think it prudent for me to join the Rheumatology blog. It's going to be hard to keep up here but I want to try. I have so many appointments it's beyond belief but I will try.

Thank you so very much. My husband and I just discussed what you said (no names). We are both taken back. Ug. Take care of yourselves my friends. I would put some cute emoticons but this table won't allow me to do it anymore so hugs to you both!!!! Sunny

Jump to this post

@sunnyflower. I was prescribed Fosamax. I actually fell last year trying stupidly to carry something heavy to my house. Landed kind of on top of the item with my right hip. Got an Xray, nothing broken, thank goodness. My daughter's mother in law had breast cancer and according to her, she lost 25 percent of bone density due to various treatments . She was on Fosamax too. She takes some supplements for joint pain. Fosamax is supposed to be taken for 3 to 5 years only, after which time, patient has to switch to something else which indicates that it's not a good drug to take long term. That alone worries me. I'm sure alot of people take this but I'm very sensitive to drugs. I'm not on any steroid. I have a small frame.. 5'2 and 105 lbs soaking wet so i don't really have much "cushion" when i fall so i have to be careful!

REPLY
1 reply
helennicola | @helennicola | Sep 10, 2020
In reply to @sunnyflower "Helen, See my reply to mayofeb202" + (show)
@sunnyflower

Helen, See my reply to mayofeb202

Jump to this post

Sunny, I don’t take steroids now, I have had about 7 injections and taken pills 3 times in the past 10 yrs. for various reasons. I am going to have an injection soon for my hip bursitis. I am 73 yrs. old, 5’ 4” 115 lbs.

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