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.

Leonard | @jakedduck1 | Sep 8, 2019
In reply to @jimhd "@sunny2 My pcp told me that if I used any marijuana he would no longer prescribe..." + (show)
@jimhd

@sunny2 My pcp told me that if I used any marijuana he would no longer prescribe morphine sulfate contin and Clonazepam. I'm not at all interested in stopping the Clonazepam in particular. My pain specialist, on the other hand, would be supportive of me giving marijuana products a try. Right now I'm just trying to do what I can to handle the pain.

Jim

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@jimhd
Hi Jim
How does the Klonopin help you? Do you have spasms? I took a huge dose and it never helped me.
Just curious.
Jake

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Sep 8, 2019
In reply to @sunny2 "@artscaping if I may, I have a couple further questions...it sounds like you use the medical..." + (show)
@sunny2

@artscaping if I may, I have a couple further questions...it sounds like you use the medical marijuana while you are taking Cymbalta? I don’t know now where I got the idea that if I start taking the Cymbalta I should stop the marijuana. Also, was it fairly soon after starting the Cymbalta that you knew it was going to be beneficial for you?

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Good evening @sunny2, I just found your post.....we have a Count on Me Club composed of 7 homes along the river. Today was our day to host the annual event. What we do is help neighbors where there is a need. A sled dog musher had a knee replacement and a neighbor fed his 26 sled dogs. A tree fell down and blocked a path so neighbors grabbed their chain saws and took care of it. Great people, wonderful neighbors.

And now to your questions....Yes, I do use medical cannabis while taking Cymbalta. Basically, I have an agreement with my medical providers that I will take care of the daytime pain of small fiber neuropathy and myofascial pain syndrome if they keep me healthy with everything else. My medical cannabis includes only tinctures and a balm for the needle-like pain. I update my portal file with any product or dosage changes and include it on the written notes that I give to them at an appointment

As I recall @sunny2, my response to the Cymbalta was immediate (3-4 days) for me to see a marked improvement with the cognitive issues. That improvement stabilized within a few weeks. It took a little longer to let go of the anxiety. I increased my mindful meditation practice to stay out of the anxiety bucket. I chose as my "goal", to let go of making judgments. And today, I tested it again at the event...I did not get anxious about anything and I did not judge.

If you have further questions.....please post them for me. May you find relief from suffering. Chris

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Sep 9, 2019
In reply to @sunny2 "@artscaping. Thanks very much for this. Especially interesting since I do have borderline osteoporosis. I see..." + (show)
@sunny2

@artscaping. Thanks very much for this. Especially interesting since I do have borderline osteoporosis. I see from reading through past postings that you get some relief with medical marijuana. I have been using it for about the last 6 to 7 weeks without any result. I am using a spray with a 1:1 ratio of CBD to THC. Each two spray dosage delivers 6 mg of CBD and 6 mg of THC. I started out very slowly and kept increasing the dose and then went back to the dispensary to talk to the pharmacist. She recommended trying 2 sprays every 4 hours and 3 sprays at night. Have been doing this for a little over a week with no change. I am going to go back and discuss getting a product with a lower ratio of THC and perhaps try that during the day and the 1:1 ratio spray at night. As others have said, I don’t like the high feeling from the THC. I am also going to see if I can also use a topical cannabis cream along with the sprays. Anyway I will persevere for awhile to see what happens.

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Hello, again @sunny2, Nice to see a post from you again. I wish I had great answers. Let's start with "yes" I use medical cannabis every day. It is my total pain control choice. May I ask about the spray? Is this a common delivery device? You say you have not felt any relief from your pain. And If I read this correctly you are going to discuss your lack of success with your pharmacist.

I have only used the spray once when I was traveling early in my attack on pain so I am not the expert here. Do you spray it under your tongue where that porous membrane disperses the droplets without running them through your digestive system? Tinctures from a reputable company known for its consistent quality are my cannabis choice. My thinking is that the droplets from the spray do not equate to a half dropper of a tincture. What do you think?

The topicals are my "lifesaver" Without them, I am known to start rubbing my hands together until it drives everyone crazy. Once again the quality is important. My resource said that with topicals you choose a dosage ratio for the pain. 3:1 CBD/THC for chronic muscular pain. 1:3 CBD/THC for more acute pain and neuropathy. Let me know of question or concerns.

May you have a restful sleep. Chris

REPLY
2 replies
helennicola | @helennicola | Sep 9, 2019
In reply to @artscaping "Hello, again @sunny2, Nice to see a post from you again. I wish I had great..." + (show)
@artscaping

Hello, again @sunny2, Nice to see a post from you again. I wish I had great answers. Let's start with "yes" I use medical cannabis every day. It is my total pain control choice. May I ask about the spray? Is this a common delivery device? You say you have not felt any relief from your pain. And If I read this correctly you are going to discuss your lack of success with your pharmacist.

I have only used the spray once when I was traveling early in my attack on pain so I am not the expert here. Do you spray it under your tongue where that porous membrane disperses the droplets without running them through your digestive system? Tinctures from a reputable company known for its consistent quality are my cannabis choice. My thinking is that the droplets from the spray do not equate to a half dropper of a tincture. What do you think?

The topicals are my "lifesaver" Without them, I am known to start rubbing my hands together until it drives everyone crazy. Once again the quality is important. My resource said that with topicals you choose a dosage ratio for the pain. 3:1 CBD/THC for chronic muscular pain. 1:3 CBD/THC for more acute pain and neuropathy. Let me know of question or concerns.

May you have a restful sleep. Chris

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Hi Chris, you probably mentioned your “reputable” source in a past post but could you please tell us again which online source you use? I am going to Ca. in November and plan to purchase some to bring home. Thanks, Helen

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1 reply
sunny2 | @sunny2 | Sep 9, 2019
In reply to @artscaping "Hello, again @sunny2, Nice to see a post from you again. I wish I had great..." + (show)
@artscaping

Hello, again @sunny2, Nice to see a post from you again. I wish I had great answers. Let's start with "yes" I use medical cannabis every day. It is my total pain control choice. May I ask about the spray? Is this a common delivery device? You say you have not felt any relief from your pain. And If I read this correctly you are going to discuss your lack of success with your pharmacist.

I have only used the spray once when I was traveling early in my attack on pain so I am not the expert here. Do you spray it under your tongue where that porous membrane disperses the droplets without running them through your digestive system? Tinctures from a reputable company known for its consistent quality are my cannabis choice. My thinking is that the droplets from the spray do not equate to a half dropper of a tincture. What do you think?

The topicals are my "lifesaver" Without them, I am known to start rubbing my hands together until it drives everyone crazy. Once again the quality is important. My resource said that with topicals you choose a dosage ratio for the pain. 3:1 CBD/THC for chronic muscular pain. 1:3 CBD/THC for more acute pain and neuropathy. Let me know of question or concerns.

May you have a restful sleep. Chris

Jump to this post

Hello @artscaping. The Count on Me Club is a wonderful idea. How fortunate you are to be surrounded with such caring neighbors. Thank you for your response. I have an appointment with the pharmacist at the marijuana dispensary on Friday to discuss other treatment options and the information you provided on what works for you will help me when I go for the consultation. I have only used the spray and it is sprayed under the tongue. I think you are correct that it may be more difficult to monitor how much I am actually getting from the spray. When I talk to the pharmacist I will ask about using a tincture and also inquire about using a topical treatment as well (which I have never tried). I remain hopeful that I will find a combination that will help to ease the discomfort. You are a role model as to what can be achieved.

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1 reply
cocodab | @cocodab | Sep 9, 2019
In reply to @hertz "I have used both gabapentin and Lyrica.. No side effects to speak of but also no..." + (show)
@hertz

I have used both gabapentin and Lyrica.. No side effects to speak of but also no relief. I am getting a referral back to the pain MD.. I had to stop my therapy as it was too painful.

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Exact results for me with what you said about. You are doing the right thing. Hope you find the right combination soon that gives you a bit relief.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Sep 9, 2019
In reply to @sunny2 "Hello @artscaping. The Count on Me Club is a wonderful idea. How fortunate you are to..." + (show)
@sunny2

Hello @artscaping. The Count on Me Club is a wonderful idea. How fortunate you are to be surrounded with such caring neighbors. Thank you for your response. I have an appointment with the pharmacist at the marijuana dispensary on Friday to discuss other treatment options and the information you provided on what works for you will help me when I go for the consultation. I have only used the spray and it is sprayed under the tongue. I think you are correct that it may be more difficult to monitor how much I am actually getting from the spray. When I talk to the pharmacist I will ask about using a tincture and also inquire about using a topical treatment as well (which I have never tried). I remain hopeful that I will find a combination that will help to ease the discomfort. You are a role model as to what can be achieved.

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@sunny2, Good afternoon and thank you. The proof of the pudding will happen on Friday. Please let me and the rest of the Connect family know what you learned from the cannabis pharmacist. Share the wealth my dear, and for us, real wealth is a pain-free life. May you have some joy today. Chris

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 9, 2019
In reply to @jakedduck1 "@jimhd Hi Jim How does the Klonopin help you? Do you have spasms? I took a..." + (show)
@jakedduck1

@jimhd
Hi Jim
How does the Klonopin help you? Do you have spasms? I took a huge dose and it never helped me.
Just curious.
Jake

Jump to this post

@jakedduck1 I've been taking a low dose of 1mg at bedtime, with the option of taking a second one if needed for anxiety, since 2006. It was originally prescribed for anxiety disorder, but I found that it calms my legs so I don't act out my kicking dreams. My wife doesn't like how many meds I take, but this is one she doesn't complain about.

So, it serves a double purpose.

I tried to taper off it a few years ago but I couldn't sleep, so I think it will be a lifelong medication, which is okay with me.

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1 reply
Leonard | @jakedduck1 | Sep 9, 2019
In reply to @jimhd "@jakedduck1 I've been taking a low dose of 1mg at bedtime, with the option of taking..." + (show)
@jimhd

@jakedduck1 I've been taking a low dose of 1mg at bedtime, with the option of taking a second one if needed for anxiety, since 2006. It was originally prescribed for anxiety disorder, but I found that it calms my legs so I don't act out my kicking dreams. My wife doesn't like how many meds I take, but this is one she doesn't complain about.

So, it serves a double purpose.

I tried to taper off it a few years ago but I couldn't sleep, so I think it will be a lifelong medication, which is okay with me.

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@jimhd
Hi Jim,
If you ever decide to discontinue your Klonopin do it slow I mean really Slllloooooooooooowwww
I took almost the max dose of the junk which is 20mg. I took 18mg for Seizures. It never phased them. It was the most difficult drug to get off of.
I hope it works well for you. Remember, we’re talking slow here and not just slow but very slow, slower than molasses in December, Extremely slow, excruciatingly slow, Imperceptibly slow. I hope you you understand I hope you understand I’m talkining about stopping slowly.
Good luck,
Jake

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2 replies
Leonard | @jakedduck1 | Sep 9, 2019

Does anyone here have seizures who uses lidocaine Infusion? I was wondering if they would restrict my driving.
Jake

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