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.

Hank | @jesfactsmon | Sep 9, 2020
In reply to @avmcbellar "Hi Hank, I learned something new today! I get headaches because of my healing brain. Thankfully,..." + (show)
@avmcbellar

Hi Hank, I learned something new today! I get headaches because of my healing brain. Thankfully, the occurrence has decreased through the years. The headaches started at twice per week and now I am down to monthly. A bag of ice was my only known remedy after many different attempts. Thank you to you and Linda for the tea link. I will give it a shot. Does she drink it daily or only when she suffers a headache? I am glad you are an advocate for yourself and Linda to do all the research in finding answers. I will ask you for any advice through your experiences. I feel I have many friends through Connect and am fortunate to have met everyone. I will continue to offer any helpful advice through our wonderful avenue of technology. Wish you both well! Toni

Jump to this post

@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

REPLY
1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 9, 2020
In reply to @sunnyflower "Oh no! I'm so sorry about your situation! I knew Gabapentin can cause swelling but didn't..." + (show)
@sunnyflower

Oh no! I'm so sorry about your situation! I knew Gabapentin can cause swelling but didn't know the rest..
Something that matters to you is not trival at all! A very wise therapist once told me that I should never minimize my pain /struggles/situation, etc. She said that is self-defeating and to honor our feelings.

For me being a woman of faith, I try to keep my focus on the One in control of my circumstances instead of my circumstances. To lay it at God's feet and ask Him to help me. This really does help me.

I too struggle with weight. I have lost 200#. My birth size was a O or 2 and my parents and grandparents had me on diets since about age 5!!

I have lost 80-90#, 4 times but this last time have kept it off. I keep fluctuating 5-7# and it takes me literally months to get it off!

I pray you will feel MUCH better about yourself and not beat yourself up anymore.

Take extra special care of yourself and know we are here for you.

Fondly, Sunnyflower. 🤗

Jump to this post

Thank you so much @sunnyflower

REPLY
bustrbrwn22 | @bustrbrwn22 | Sep 9, 2020
In reply to @mfmteam "Hi all I just heard bout this forum I’m new. I was diagnosed with CRPS type..." + (show)
@mfmteam

Hi all I just heard bout this forum I’m new. I was diagnosed with CRPS type 2 I get hives on left side of body do to a work injury , to my left hip lower back. Long story felt a take my breathe away pain in left hip/ lower back I fell onto big rocks without bracing my fall, company dr kind of blew my hip pain off said it was my back muscles had x ray of back called it a lumbar strain contusion, allowed to work 3 monthes entire time complaining of hip pain they did bone scan and closed mri finally that showed possible fractured hip starting to heal and hip labrum tear. Few days after injury I was getting raised hives on my hip that burned couldn’t touch them , asked company dr. Said no clue. Finally after being pissed I got my own drs had labrum surgery which lead to hives coming two days after from my neck to my ankles. Surgeon saw I explained the pain to touch lots of other issues I’ve never had in 47 years my left ankle swelled no reason etc. all my 4 treating drs that are amazing all agree , of course the work dr that’s hired says he doesn’t think I do. ( save ins. Money) is why says I don’t hit the Budapest criteria which all my drs use and I have 3/4 of all .. I’m getting Charlie horses so bad I’m in tears has anyone had this? From my hip to toes on left side. My pains a constant 5 when it’s real bad a 15-20 I’m in PA and on medical marijuana, 2400 mgs of gabapentin and flexerall. And Suboxen which is very interesting, was on pain meds years and years ago. Never did drugs I didn’t like the opiates and needed to ween down they prescribed Suboxen which also helped with the pain without the opiate side effects, I stopped the subs 5 days prior to surgery, when my surgeon saw the hives after surgery off the subs he pulled up a power point and said I knew I saw this in the crps power point, one of the Medications in the Suboxen helps desensitize the skin in patients that get the hives from the crps / pain they upped to 3 a day and it helps keep hives at bay! Love that I found this. Love to chat with anyone that has similar issues!!

Jump to this post

@mfmteam I am so sorry for what you went through. My prayers are with you

REPLY
fiesty76 | @fiesty76 | Sep 9, 2020
In reply to @jesfactsmon "@catharbert This is off the current topic completely but I read through your previous posts just..." + (show)
@jesfactsmon

@catharbert

This is off the current topic completely but I read through your previous posts just now and I ran across one from 8/28 in which you say:

"My husband has terrible migraines caused by weather, usually thunderstorms and other than strong narcotic medicines there no treatment has been offered"

My wife has been getting these terrible headaches which she believes are caused by changes in barometric pressure, like when, for example, a storm front comes in. But often even more subtle BP changes. I felt compelled to tell you about something that has helped her quite a bit. I found something called Shifa tea out of New York City that has helped her a lot. Here is the Amazon link:

https://smile.amazon.com/gp/product/B01N3QDZ74/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

She brews a batch of it in a pot and it has a strong odor. She only puts a couple ounces of the brew into a cup of hot water or else it's too strong. I don't know if this will help your husband, but who knows? Best to you! Hank

Jump to this post

@jesfactsmon, Hank I appreciate this information, too. I get barometric pressure headaches, but thankfully not migraines. We had a huge temp change and barometer shift last night and so woke up with one. A close friend suffers migraines and I called today and sure enough she is having a miserable day. I'll be ordering some of the Shifa tea. Thanks for the suggestion.

REPLY
sunnyflower | @sunnyflower | Sep 9, 2020
In reply to @bustrbrwn22 "My psychiatrist gave it to me as a last resort for manic depression and warned me..." + (show)
@bustrbrwn22

My psychiatrist gave it to me as a last resort for manic depression and warned me if a rash developed to call him. I paged him and he said he didn’t think I should be concerned The 2nd time I went to the ER and then that whole nightmare. Didn’t help depression either.

Jump to this post

Oh my gracious!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Inexcusable! Time to look for another doc if you feel so led. Even a 2nd or 3rd opionion. I'm so sorry you had to go through that!!!!! I haven't been able to keep up w/ all the posts, so I may have missed some status info on this but either way, I'm so hoping this has resolved and that you are rash-free and getting some good treatment for your needs. I will send up a few on your behalf bustrbrwn22. Carring so much, Sunnyflower

REPLY
1 reply
sunnyflower | @sunnyflower | Sep 9, 2020
In reply to @jennredd "I'm new at this I've tried all the different medicines side effects on all of them..." + (show)
@jennredd

I'm new at this I've tried all the different medicines side effects on all of them diarrhea spacing out however yucky feeling with those the pain is atrocious I don't do much anymore I do some exercise. 3 days a week any suggestions for the pain

Jump to this post

Hi jennredd, I agree w/ John's advice. For most of us, we've tried the options and have had to see if we tolerate them and have had to titrate the doses over time to reach a therapeutic level. If we find that, then over time, we may build a tolerance and have to titrate up on the dose.
I join in along w/ the group that we wish you the very best, very soon!!!!! I will be sending a few up on your behalf! Many blessings and prayers, Sunnyflower PS: I can't figure out to include an emogi here on my tablet. Warmest regards to you!!!!!

REPLY
bustrbrwn22 | @bustrbrwn22 | Sep 9, 2020
In reply to @sunnyflower "Oh my gracious!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Inexcusable! Time to look for another doc if you feel so led. Even..." + (show)
@sunnyflower

Oh my gracious!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Inexcusable! Time to look for another doc if you feel so led. Even a 2nd or 3rd opionion. I'm so sorry you had to go through that!!!!! I haven't been able to keep up w/ all the posts, so I may have missed some status info on this but either way, I'm so hoping this has resolved and that you are rash-free and getting some good treatment for your needs. I will send up a few on your behalf bustrbrwn22. Carring so much, Sunnyflower

Jump to this post

@sunnyflower Seizure free for 2 years in April. I really believe if I had had another seizure i would never be able to read or talk again. I may be wrong but I think it was lamictal/lamotrigine. Thank you so much for caring. Seizures are on the black box label

REPLY
1 reply
sunnyflower | @sunnyflower | Sep 9, 2020
In reply to @helennicola "I just read that there are a few caveats associated with gaba and osteoarthritis: if you..." + (show)
@helennicola

I just read that there are a few caveats associated with gaba and osteoarthritis: if you are also taking the drug Zometa and you have a Multiple Myloma you may experience that side effect. Sunny, I would add that regarding osteoarthritis that the usual prescribed drugs can cause joint pain (which I experienced and stopped taking) and bone fragility which then can cause fractures! Unless these drugs have been improved over the past years I would do some research. Just FYI. Wishing you the best, Helen

Jump to this post

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.

REPLY
3 replies
sunnyflower | @sunnyflower | Sep 9, 2020
In reply to @bustrbrwn22 "@sunnyflower Seizure free for 2 years in April. I really believe if I had had another..." + (show)
@bustrbrwn22

@sunnyflower Seizure free for 2 years in April. I really believe if I had had another seizure i would never be able to read or talk again. I may be wrong but I think it was lamictal/lamotrigine. Thank you so much for caring. Seizures are on the black box label

Jump to this post

Very scary. Very glad no seizures past 2 years. I pray you will never have another seizure! It would be nice if you could be reassured of that. I know it takes a medical professional who knows your entire medical Hx, and even then they may not be able to offer you that assurance, but maybe hope at minimum? Here's hoping!!! Blessings, Sunnyflower

REPLY
bustrbrwn22 | @bustrbrwn22 | 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 holy crap. I’m sending positive energy your way.

REPLY
View MoreView Less
Please sign in or register to post a reply.