1. < Chronic Pain

Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

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

Mentor
Ginger, Volunteer Mentor | @gingerw | Aug 26, 2019

@artscaping You have done a great service for many people who are confused about CBD and cannabis products. Your information is timely and given in such a way we can all understand. Thank you for your input!
Ginger

REPLY
1 reply
kimspr3 | @kimspr3 | Aug 26, 2019
In reply to @briansr "It's an honor to find a group of people that have been, and are still going..." + (show)
@briansr

It's an honor to find a group of people that have been, and are still going<br />
through, what we all face 24/7. I'm getting worse but a lot of this startup<br />
group have alot more problems than myself. Let's try to grow this group<br />
into one large enough to let our "FRIENDS" in Washington know that we are<br />
indeed human beings and could use some representatives in D.C. to open<br />
their minds and hearts to the millions that suffer daily with very little<br />
to look forward to. I want to write, a novel, book, articles to whoever we<br />
can reach. I just need some ideas. Do you suppose there is a pain monthly<br />
magazine. LOL briansr<br />

Jump to this post

Hello briansr, I too have severe chronic pain, Adhesive Arachnoiditis. Severe damage to the spine, nerves and more. I have been trying to get some attention in the field of rare diseases. "NORD" is a good place for people to start. I contacted NORD for help contacting the right people, they told me about Acting FDA Commissioner, Norman E. "Ned" Sharpless [last name has a ring to it] He was a keynote Speaker this year's Rare Diseases & Orphan Products. He is a physician and scientist. He will be going to Washington this fall for a 2 day discussions, advanced tech., rare diseases. I will be contacting him in hopes he can guide me in the rt. direction for opening the door to the right people in Wash. NORD is a great site if patients need information or help. My experience has been a positive one including always emailed a reply. If a group of us and others you may know can join the fight to get to Washington, DC..

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Aug 26, 2019
In reply to @gingerw "@artscaping You have done a great service for many people who are confused about CBD and..." + (show)
@gingerw

@artscaping You have done a great service for many people who are confused about CBD and cannabis products. Your information is timely and given in such a way we can all understand. Thank you for your input!
Ginger

Jump to this post

@gingerw, Thank YOU Ginger!....I try to stay on top of the industry from a patient perspective. There is sooooo much information and it is outdated just about the time you read and absorb it. If this content is valuable...then I will continue. Happy day....Chris

REPLY
patrick17 | @patrick17 | Aug 26, 2019
In reply to @karen00 "@johnbishop Hi John, thank you for the article. I must be the only person in the..." + (show)
@karen00

@johnbishop Hi John, thank you for the article. I must be the only person in the world who tried CBD oil and got no help. Maybe I wasnt taking a strong enough dose, but where do you get that info? I had no idea what strength or how much. It’s bewildering. ........Karen

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@karen00 Hi Karen, I’m sure there many others who have not been helped by CBD. I am one of them. It has not helped the nerve pain in my arm and hands. I tried three different brands of CBD oil. The last one I purchased at a pharmacy. It was very potent and very expensive. All it did was make me feel spacey. I know of people with arthritis who have been helped by CBD oil, but it doesn’t help everyone.

REPLY
2 replies
Bonnie | @eifeltower | Aug 26, 2019
In reply to @patrick17 "@karen00 Hi Karen, I’m sure there many others who have not been helped by CBD. I..." + (show)
@patrick17

@karen00 Hi Karen, I’m sure there many others who have not been helped by CBD. I am one of them. It has not helped the nerve pain in my arm and hands. I tried three different brands of CBD oil. The last one I purchased at a pharmacy. It was very potent and very expensive. All it did was make me feel spacey. I know of people with arthritis who have been helped by CBD oil, but it doesn’t help everyone.

Jump to this post

Hi Patrick
The same cbd has done nothing for my nerve pain 5 months later.

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Aug 26, 2019
In reply to @kimspr3 "Hello briansr, I too have severe chronic pain, Adhesive Arachnoiditis. Severe damage to the spine, nerves..." + (show)
@kimspr3

Hello briansr, I too have severe chronic pain, Adhesive Arachnoiditis. Severe damage to the spine, nerves and more. I have been trying to get some attention in the field of rare diseases. "NORD" is a good place for people to start. I contacted NORD for help contacting the right people, they told me about Acting FDA Commissioner, Norman E. "Ned" Sharpless [last name has a ring to it] He was a keynote Speaker this year's Rare Diseases & Orphan Products. He is a physician and scientist. He will be going to Washington this fall for a 2 day discussions, advanced tech., rare diseases. I will be contacting him in hopes he can guide me in the rt. direction for opening the door to the right people in Wash. NORD is a great site if patients need information or help. My experience has been a positive one including always emailed a reply. If a group of us and others you may know can join the fight to get to Washington, DC..

Jump to this post

@kimspr3 I'm glad to hear someone is getting information from NORD. I have an ultra-rare kidney disease [less than 50 in the world ever diagnosed with it], and they can offer me nothing.
Ginger

REPLY
1 reply
karen00 | @karen00 | Aug 26, 2019
In reply to @patrick17 "@karen00 Hi Karen, I’m sure there many others who have not been helped by CBD. I..." + (show)
@patrick17

@karen00 Hi Karen, I’m sure there many others who have not been helped by CBD. I am one of them. It has not helped the nerve pain in my arm and hands. I tried three different brands of CBD oil. The last one I purchased at a pharmacy. It was very potent and very expensive. All it did was make me feel spacey. I know of people with arthritis who have been helped by CBD oil, but it doesn’t help everyone.

Jump to this post

@patrick17 Hi Patrick!! Thank you so much for taking the time to write. It does make me feel better to know I’m not the only one! I’m sorry about your nerve pain. How long have you had it? I have rheumatoid arthritis, osteoarthritis, and fibromyalgia. Pain definitely affects my moods & relationships. I wish there were better answers........Karen

REPLY
Bonnie | @eifeltower | Aug 27, 2019
In reply to @karen00 "@johnbishop Hi John, thank you for the article. I must be the only person in the..." + (show)
@karen00

@johnbishop Hi John, thank you for the article. I must be the only person in the world who tried CBD oil and got no help. Maybe I wasnt taking a strong enough dose, but where do you get that info? I had no idea what strength or how much. It’s bewildering. ........Karen

Jump to this post

Hi Karen
It didnt help my nerve pain either
Took it for 4 months strongest dose

REPLY
1 reply
kimspr3 | @kimspr3 | Aug 27, 2019
In reply to @gingerw "@kimspr3 I'm glad to hear someone is getting information from NORD. I have an ultra-rare kidney..." + (show)
@gingerw

@kimspr3 I'm glad to hear someone is getting information from NORD. I have an ultra-rare kidney disease [less than 50 in the world ever diagnosed with it], and they can offer me nothing.
Ginger

Jump to this post

Hi Ginger, I don't understand why they have no information, guidance for you. May I try with your permission? name of you disease? I feel so bad.

REPLY
1 reply
kimspr3 | @kimspr3 | Aug 27, 2019
In reply to @karen00 "@johnbishop Hi John, thank you for the article. I must be the only person in the..." + (show)
@karen00

@johnbishop Hi John, thank you for the article. I must be the only person in the world who tried CBD oil and got no help. Maybe I wasnt taking a strong enough dose, but where do you get that info? I had no idea what strength or how much. It’s bewildering. ........Karen

Jump to this post

Hello John, I live in NJ, my P.M.dr. ordered medication for me sadly it didn't work. Name of the Town & Country Compounding Pharmacy. They have consulting I received an email from them about CBD OIL. Today I will be receiving high dose pill form and sublingual. The owner has pain, very familiar with my condition, finally someone is. He starting me on the high does until my body adjusts and hopefully in time the lower doses will work. I don't live close so sent to me via FedX

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