1. < Neuropathy
Mentor

Member Neuropathy Journey Stories: What's Yours?

Posted by John, Volunteer Mentor @johnbishop, May 12, 2020

This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.

— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?

Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?

What's your neuropathy story?

Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.

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

Hank | @jesfactsmon | Jan 10, 2021
In reply to @artist01 "Hello @jesfactsmon. I live in British Columbia, Canada, so Marijuana is recently legal in my province...." + (show)
@artist01

Hello @jesfactsmon. I live in British Columbia, Canada, so Marijuana is recently legal in my province. However, since I'm a resident of a seniors' home, we're not allowed to smoke Marijuana, or indeed to smoke at all, in or near this facility. I'm bipolar, so have been prescribed both Cymbalta and Gabapentin, and possibly Lyrica, in the past that was prior to my GCA, Diabetes, IBD, and neuropathy, and am now unable to take meds. of that type due to bad reactions (like your wife). As my doc told me, CBD oil was just about my last alternative, since prescription meds. are now out the question. I had an enlightening conversation with my pharmacist yesterday,
when I brought up my concern about Eliquis and CBD Oil. While she concurred that Eliquis is metabolized by CYP450, then CBD Oil would act as an additional bloodthinner and therefore not recommended to do both because of extensive bleeding and/or liver enzyme problems. While she cautioned me about using both, she said that because CBD helps me with my severe insomnia and anxiety, it may be worth the risk for my health's sake. She advised I would have to monitor myself for extensive bleeding, black or tarry stools, bowel pain, etc., but that it would be my own decision to continue the CBD with Eliquis. Such a dilemma, but I'm comforted by that opinion.
Besides the neuropathy, I've been suffering for some time with intense itching all over my body. Research has shown me various reasons; liver disease, kidney disease, IBD, certain cancers. I've exhausted the possibility of skin or food allergens by process of elimination. I plan to call my
No. 1 specialist on Monday to ask for a complete lab workup. I've never been that bold before but I'm feeling pretty desperate what with all these issues.
Thanks for your ear, Hank. I sometimes feel like I'm out on a raft in the ocean with nobody answering my SOS!
Best to you and your wife,
Laurie

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@artist01
Thanks for your response Laurie. I am sorry to hear about the itch problem. There is a discussion here started by Chris, here is the link in case you want to take a look:
https://connect.mayoclinic.org/discussion/what-do-you-do-for-neuropathy-itch/
Linda (my wife) gets itchy as well. Often it's her feet but sometimes all over. When it is localized to the feet she has found Aveeno anti itch cream to be the one thing that calms the itch (we get it at Walmart). If she gets a particularly excruciating bout of it she puts it on and it will usually calm it down. The only thing she does when it strikes all over is ride it out. She does occasionally give in to a scratch here and there but tries very hard not to. If she uses kratom that will usually take care of all of her different pain issues, which primarily are PN, headache, tinnitus and fibromyalgia. Kratom give complete relief but also comes with the price of making her somewhat sedated. Great if you want to go to sleep but not so good for the daytime. If you are interested in kratom, there is plenty of info available and I can tell you a good pure brand to buy. Let me know.
BTW, we love Canada abd used to visit Vancouver sometimes when we lived in Portland, Oregon. Beautiful country up in BC. As far as marijuana, is the medical variety available there? You can buy the kind you do not have to smoke, I think. Best, Hank

REPLY
1 reply
artist01 | @artist01 | Jan 10, 2021

Hi Hank. Thanks again for your response. I haven't heard about Kratom and would be pleased if you'd tell me of a pure brand and where to buy it. Also, I'm sure we can get medical marijuana in Canada, but I thought that's what CBD Oil is. Didn't know there was a type you didn't have to smoke. More of your info on that would be appreciated.
I'll check out the link you sent me regarding the itch problem. Its SO extreme now.
Thanks for loving my great country of Canada. I love it too! Best, Laurie

REPLY
1 reply
artist01 | @artist01 | Jan 10, 2021
In reply to @jesfactsmon "@artist01 Thanks for your response Laurie. I am sorry to hear about the itch problem. There..." + (show)
@jesfactsmon

@artist01
Thanks for your response Laurie. I am sorry to hear about the itch problem. There is a discussion here started by Chris, here is the link in case you want to take a look:
https://connect.mayoclinic.org/discussion/what-do-you-do-for-neuropathy-itch/
Linda (my wife) gets itchy as well. Often it's her feet but sometimes all over. When it is localized to the feet she has found Aveeno anti itch cream to be the one thing that calms the itch (we get it at Walmart). If she gets a particularly excruciating bout of it she puts it on and it will usually calm it down. The only thing she does when it strikes all over is ride it out. She does occasionally give in to a scratch here and there but tries very hard not to. If she uses kratom that will usually take care of all of her different pain issues, which primarily are PN, headache, tinnitus and fibromyalgia. Kratom give complete relief but also comes with the price of making her somewhat sedated. Great if you want to go to sleep but not so good for the daytime. If you are interested in kratom, there is plenty of info available and I can tell you a good pure brand to buy. Let me know.
BTW, we love Canada abd used to visit Vancouver sometimes when we lived in Portland, Oregon. Beautiful country up in BC. As far as marijuana, is the medical variety available there? You can buy the kind you do not have to smoke, I think. Best, Hank

Jump to this post

Hi @jesfactsmon. Hank, I've checked out your link on itching and realize I've been on that site, and posted too. A very informative site for all us itchy sufferers. Some helpful tips on how to get relief, which I'll certainly seek out.

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sunnyflower | @sunnyflower | Jan 10, 2021
In reply to @notborntoburn "I do not think misery loves company,but your neuropathy journeys connect us with encouragement and insight,thank..." + (show)
@notborntoburn

I do not think misery loves company,but your neuropathy journeys connect us with encouragement and insight,thank you! I have had those shots between my toes,no relief but a jump in pain during the injections! I have no advice or suggestions for any burn control,cramping,electrical jolts or any new reaction to idiopathetic neuropathy. I will always be on the train to finding some relief,as we all are. For today I will eat ice cream a healthy diet can't be balanced without ice cream!

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Dearest notborntoburn, I agree with you that our like experiences connect us. I receive so much support, encouragement, inspiration, empathy, caring, education, compassion, etc. here in the various groups I am in. I am so grateful to have found you all!!

You made me smile today when I read what you said about ice cream! 😁🍨 I think a part of me thought yay, I can get off my deprivation diet (well, I did go on a gluttonous binge for 4 days, two weeks ago) LOL!! 🥺

Your message was lovely so I just wanted to thank you! Warmest wishes, Sunnyflower 😊🌹

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sunnyflower | @sunnyflower | Jan 10, 2021
In reply to @helenholland3 "Hello Rachel my story is lengthy as well. I have been though many testing and have..." + (show)
@helenholland3

Hello Rachel my story is lengthy as well. I have been though many testing and have come up with no diagnosis. Unknown cause for my Perpheral Neuropathy. Cut a long story cut, I take lyrica for some of the shocking pain we experience. It's a living nightmare. I started in my late twenties and its become unbearable at 50 and I'm now 56 yrs old.

Regards Helen Holland.

Jump to this post

Hello Helen, I am Sunnyflower. My heart is heavy reading about your unbearable pain. I can empathize. Sometimes my unrelenting pain causes me to have to fight for my sanity. Literally! I have so many diseases and conditions, many of them painful. The neuropathy takes the cake. I take Gabapentin which I hate but it does make me not pull the trigger or jump! I'm also on morphine. These meds don't take away pain, only help one tolerate it. My husband has the shocking pain from his diabetes. My neuropathy is head to toe literally. I also have numbness all around my body as well but the pain is still there too. Go figure!

What gets me through is my faith. I have a personal relationship w/ Jesus and His ever-presence, comfort and peace that surpasses human understanding satisfies my soul. There are so many bible verses that bring comfort, assurance of things to come and His purposes in my affliction. I know Him and His sacrificial, boundless, vast, deep, unmerited, unconditional, free etc. love that I am able to trust Him implicitly in my circumstances. If I can remember to focus on the One in control of my circumstances rather than my circumstances, I can make it through whether it be another second, moment or day. Not easy!!! But possible! Romans 8:18 tells us that our present suffering can not be compared with the glory that will be revealed in us, for those in heaven through Christ.

I hope you have the support you need. I have found great compassion, support, encouragement, inspiration, empathy, friendship, education and so much more here on Connect and I know you will find the same.

Many blessings, Sunnyflower

REPLY
Hank | @jesfactsmon | Jan 11, 2021
In reply to @artist01 "Hi Hank. Thanks again for your response. I haven't heard about Kratom and would be pleased..." + (show)
@artist01

Hi Hank. Thanks again for your response. I haven't heard about Kratom and would be pleased if you'd tell me of a pure brand and where to buy it. Also, I'm sure we can get medical marijuana in Canada, but I thought that's what CBD Oil is. Didn't know there was a type you didn't have to smoke. More of your info on that would be appreciated.
I'll check out the link you sent me regarding the itch problem. Its SO extreme now.
Thanks for loving my great country of Canada. I love it too! Best, Laurie

Jump to this post

@artist01
Hi Laurie, I found a website that describes a variety of types on medical marijuana available, including edible. Here is that link:
https://themedicalcannabiscommunity.org/articles/blog/going-smokeless-consuming-cannabis-without-combustion/
Here is another that offers edible MJ: https://www.sonomapatientgroup.com/uncategorized/the-benefits-of-smokeless-cannabis-getting-started-with-edibles/
We have no experience with smokeless marijuana. Hopefully another member can give you some insights on it.
In regards to kratom, another member named Lori, @lorirenee1 (who is an excellent resource for info) , turned me on to a good, pure, and trustworthy brand, Etha Naturals, link here:
https://ethanaturals.com/
Lori recommended the pill form of kratom, which is just pure kratom, no additives, and that is what I bought for Linda, who has mostly used the ones for pain (they also have ones for sleep, energy, focus, etc.). She has liked the Maeng Da and the Full Spectrum products especially, and again, only the pill form. I am sure Lori will be happy to give you more particulars, she has used kratom extensively.
Best, Hank

REPLY
2 replies
artist01 | @artist01 | Jan 11, 2021
In reply to @jesfactsmon "@artist01 Hi Laurie, I found a website that describes a variety of types on medical marijuana..." + (show)
@jesfactsmon

@artist01
Hi Laurie, I found a website that describes a variety of types on medical marijuana available, including edible. Here is that link:
https://themedicalcannabiscommunity.org/articles/blog/going-smokeless-consuming-cannabis-without-combustion/
Here is another that offers edible MJ: https://www.sonomapatientgroup.com/uncategorized/the-benefits-of-smokeless-cannabis-getting-started-with-edibles/
We have no experience with smokeless marijuana. Hopefully another member can give you some insights on it.
In regards to kratom, another member named Lori, @lorirenee1 (who is an excellent resource for info) , turned me on to a good, pure, and trustworthy brand, Etha Naturals, link here:
https://ethanaturals.com/
Lori recommended the pill form of kratom, which is just pure kratom, no additives, and that is what I bought for Linda, who has mostly used the ones for pain (they also have ones for sleep, energy, focus, etc.). She has liked the Maeng Da and the Full Spectrum products especially, and again, only the pill form. I am sure Lori will be happy to give you more particulars, she has used kratom extensively.
Best, Hank

Jump to this post

Thankyou Hank. I'll check out this site and maybe contact Lori for more info as to her experience with Kratom too.

REPLY
artist01 | @artist01 | Jan 11, 2021
In reply to @jesfactsmon "@artist01 Hi Laurie, I found a website that describes a variety of types on medical marijuana..." + (show)
@jesfactsmon

@artist01
Hi Laurie, I found a website that describes a variety of types on medical marijuana available, including edible. Here is that link:
https://themedicalcannabiscommunity.org/articles/blog/going-smokeless-consuming-cannabis-without-combustion/
Here is another that offers edible MJ: https://www.sonomapatientgroup.com/uncategorized/the-benefits-of-smokeless-cannabis-getting-started-with-edibles/
We have no experience with smokeless marijuana. Hopefully another member can give you some insights on it.
In regards to kratom, another member named Lori, @lorirenee1 (who is an excellent resource for info) , turned me on to a good, pure, and trustworthy brand, Etha Naturals, link here:
https://ethanaturals.com/
Lori recommended the pill form of kratom, which is just pure kratom, no additives, and that is what I bought for Linda, who has mostly used the ones for pain (they also have ones for sleep, energy, focus, etc.). She has liked the Maeng Da and the Full Spectrum products especially, and again, only the pill form. I am sure Lori will be happy to give you more particulars, she has used kratom extensively.
Best, Hank

Jump to this post

Hello again, Hank. I've checked the sites you've sent me re: smokeless MJ and kratom. I had tried the edibles previously but had to stop due to taking bloodthinners, with the concern my specialist had over that conflict of unregulated amount in the edibles, which might cause too much thinning of the blood. AND, they made me feel high! I felt like I was levitating during the few hours it was in my system. I'm so medication-sensitive that it just isn't for me, even though I so wanted it to work.
I researched the kratom online, ending with the Mayo Clinic site, which I trust implicitly. And, no thanks, also too scarey for me to try. Mayo has a good article, mayoclinic.org.art-20402171, "Kratom Unsafe and Ineffective- Mayo Clinic". I know it's good for many, (including Lori and your wife, Linda), but I have so much trouble with meds, etc., that I don't dare try it. I very much appreciate your going to bat for me though, Hank. I really do. Best, Laurie

REPLY
1 reply
lorirenee1 | @lorirenee1 | Jan 11, 2021
In reply to @artist01 "Hello again, Hank. I've checked the sites you've sent me re: smokeless MJ and kratom. I..." + (show)
@artist01

Hello again, Hank. I've checked the sites you've sent me re: smokeless MJ and kratom. I had tried the edibles previously but had to stop due to taking bloodthinners, with the concern my specialist had over that conflict of unregulated amount in the edibles, which might cause too much thinning of the blood. AND, they made me feel high! I felt like I was levitating during the few hours it was in my system. I'm so medication-sensitive that it just isn't for me, even though I so wanted it to work.
I researched the kratom online, ending with the Mayo Clinic site, which I trust implicitly. And, no thanks, also too scarey for me to try. Mayo has a good article, mayoclinic.org.art-20402171, "Kratom Unsafe and Ineffective- Mayo Clinic". I know it's good for many, (including Lori and your wife, Linda), but I have so much trouble with meds, etc., that I don't dare try it. I very much appreciate your going to bat for me though, Hank. I really do. Best, Laurie

Jump to this post

@artist01 Hi, If you are on blood thinners, do not take Kratom, as it also, can thin the blood. Also know, that there are many very positive medical reviews about Kratom, besides the negative Mayo review. It is definitely a medication like any other, and must be used with caution. LoriRenee1

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1 reply
artist01 | @artist01 | Jan 11, 2021
In reply to @lorirenee1 "@artist01 Hi, If you are on blood thinners, do not take Kratom, as it also, can..." + (show)
@lorirenee1

@artist01 Hi, If you are on blood thinners, do not take Kratom, as it also, can thin the blood. Also know, that there are many very positive medical reviews about Kratom, besides the negative Mayo review. It is definitely a medication like any other, and must be used with caution. LoriRenee1

Jump to this post

Hi Lori. Thankyou for your message. And yes, after reading about it today, I know not to take kratom because of the bloodthinng properties. You are so fortunate to be able to use it, and I'm sure it's helped you. It's just like the controversy with CBD Oil - either all positive reviews or all negative! I'm trying that, with a minimal dose, even though with my Eliquis it's not recommended because it too acts as a blood thinner. Too desperate with all my health issues not to try something, despite the risks entailed. My pharmacist advised to watch for excessive bleeding, black tarry stools, etc., as a sign to stop the CBD Oil. My best to you. Laurie

REPLY
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