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Living with Neuropathy - Welcome to the group
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?
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Good morning.
Curious, aren’t there side effects from using this
cannabis ?
I tried it one time, briefly, because I noticed some
digestive issues. Is this considered one of the main
side effects. If yes, doesn’t seem worth the aggravation
to me but then again, maybe I was experiencing a
different issue at that time.
Just wondering.
Thanks.
Vince
Good evening Vince, thanks for your response and I will gladly answer your question. The fact is, I have no side effects with medical cannabis with a couple of exceptions.
#1 is dry mouth. I carry a Contigo bottle everywhere I go. I also notice that THC seems to bring on a slightly more intense dry mouth.
I also make my own lemonade with fresh lemons and a bit of sugarless energy drink to prevent kidney stones. That helps also.
I stick to tinctures and topicals.......no drinks or treats like homemade brownies. Maybe it is time to give cannabis another try. There have been lots of improvements in both the growing and the preparation of the current products.
I can't think of anything else.....I sleep well, usually with my nerve pain under control. I have never had any constipation or digestive issues.
Have you experienced side effects or read about them?
May you have contentment and ease in your life.
Chris
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2 ReactionsAre there tests for dx neuropathy?
They ruled out fibromyalgia and autoimmune and say it’s ibs …my pain is in my whole body . Bad in stomach and head but my bones hurt all over .
Thank you for your time .
@johnbluffside - Yes, there are tests for diagnosing neuropathy? Neuropathy Commons has some good information to learn more here - https://neuropathycommons.org/diagnosis/diagnosing-peripheral-neuropathy
I know it's difficult when you hurt all over and don't have any answers. I don't have IBS but have read that it can cause pain all over. Does this sound like your symtpoms?
"Can IBS cause pain all over body?
People with IBS frequently suffer from headaches, and backache, urinary symptoms, tiredness, and pain in many parts of the body."
--- Is this IBS? | The IBS Network: https://www.theibsnetwork.org/have-i-got-ibs/is-this-ibs/
Have you thought about seeking a help or a second opinion at a major teaching hospital or health facility?
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1 ReactionThank you fir your time And all the articles
Yes we are at leading teaching hospital with leading drs yet the follow up for most the caring for most is not been a good experience at all
Autoimmune dr ruled out everything
Neurologist refused blocks
Seeing chiropractor for accupuncture
Seeing registered dietician specialist in ibs
Nothing is helping
Have you ever heard of Botox injections in the abdomen for ibs ?
Take good care and thank you for caring !
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2 ReactionsHi @johnbluffside, I have heard about Botox injections for swallowing problems but not IBS. There a discussion on the first one - Botox injection for swallowing issues - Debating Surgery: https://connect.mayoclinic.org/discussion/botox-injection/.
I did find an older 2008 article that might be helpful --- Botulinum Toxin and Gastrointestinal Tract Disorders: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093735/
I’ve had neuropathy for close to 8 years. I started after I had been on Tramadol for 10 years. Thought that was the cause. My pain Dr said no they really don’t know why I have it. I’m not a diabetic. Went to Neurologist and was tested. Yup you have it. Take B vitamins and Nurontin. Don’t know why you have it. That was bad experience. Frustrating.
I have burning in my feet. Tingling and stinging. And I think it is starting in my hands. Started with right foot but now the left and top as well as bottom. Feels crunchy when I flex my toes. Now the feeling is going up my legs. Half way to my knees. I goggle neuropathy and I get all these people swearing by this supplement and another. All wanting you to try their products. $40-50 a month. Who out there is having good results with a supplement I can get. I wouldn’t mind $50/month if I knew it worked. That’s why I’m on this chat room. Can anyone share ?
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1 ReactionHi @danmardy44, Welcome to Connect. I think a lot of us have your frustration. When I first started searching for answers, I joined the Minnesota Neuropathy Association. At one of our meetings before it disbanded we had a guest speaker – an 80+ year old neurologist from the University of Minnesota – 2 comments he made that got my attention were if you live long enough everyone gets neuropathy and the second one was how the term idiopathic came about for diagnosing neuropathy – from the idiot neurologist who diagnosed it. 😁 Since then I have been trying to learn as much as I can about neuropathy causes and available treatment options which can be frustrating since there really is no cure, just treatments for the symptoms.
Two sites that have helped me are:
-- Neuropathy Commons: https://neuropathycommons.org/
-- The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
There is another discussion you might find helpful -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Do you mind sharing a little more about your neuropathy diagnosis and symptoms?
@danmardy44 - I don't think there is a simple answer for your question. I shared my story along with others on what has helped us in the discussion in my previous post here - — Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
You are right about the snake oil salesman on the Internet. They are out there wanting to take the money from anyone hurting with neuropathy and chronic pain. The best thing you can do is be your own advocate and learn as much as you can about a particular treatment, supplement or therapy. Here are a few links that can help you do that...
Quazar's guidance about avoiding scams and snake oil cures
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/
FDA's Health Fraud Page
-- https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm
NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
-- https://nccih.nih.gov/health/decisions
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