Living with Neuropathy - Welcome to the group

Posted by Colleen Young @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?

@wilcy

Tks, dispensary’s sold me 5 samples! All different levels of thc and cbd levels! Thought it would atleast me from neuropathy! Nothing! Guess I will get back with them! Expensive!

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It takes a while to get built up in your system. I use CBD with higher THC content which is made for me by a family member who is a grower in MI. Taking it once is not going to tell you much. I sleep like a baby and it definitely does help me a bunch. We are all different so I am not saying it will help you but I do know you have to give it a chance to build up in your system. I have been on it now for 3 months and it is really helping a whole lot. It was suggested by my neurologist who is one of the tops in his field in the eastern U.S. I also take ginger root, Alpha Lipoic acid, apple cider vinegar and Turmeric (3 grams a day) and all of these 4 items can be bought in Walmart pharmacy in CAPSULE form. Just a suggestion. It works for me but might not work for you. Good luck. I wish you well.

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@gonefishin2743

I have peripheral Neuropathy caused by being poisoned with Levaquin. First problem that cropped up was Psoriasis abou 3 months after surgery where I was given Levaquin IV to prevent infection. The Psoriatic Arthritis. Now Peripheral Neuropathy. I refuse to give up or give in to any of it. It isn't in my DNA. I am 76 yrs old and have remained active however I have a problem with the owners and managers of our mobile home park here in North Fort Myers FL I have found that water Aerobics does wonders for my strength and balance. However we bought a mobile a year ago in this park and I requested permission to put up an above ground pool for water therapy. I gave them a note from my Dr that it was necessary for my physical disability neuropathy. I got a letter from their attorney that was the most condescending demeaning letter I have ever seen in my life. He informed me that he has neuropathy and couldn't imagine any type of water therapy that would help my condition. The guy is not a Dr he is an attorney who obviously thought he knew more than my neurologist who is one of the tops in his field in the eastern U.S.

Anyway my question for anyone here is do you have good luck with water therapy or water aerobics.
Than you for your answers.

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Hello @gonefishin2743 — Welcome to Connect. There is another discussion that you might want to view to meet other members disussing water exercises for neuropathy.

> Groups > Neuropathy > Water Exercise for Peripheral Neuropathy
https://connect.mayoclinic.org/discussion/water-exercise-for-peripheral-neuropathy/

Have you thought about checking around the area for a mobile home park that allows an above ground pool or is that not an option?

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@gonefishin2743

It takes a while to get built up in your system. I use CBD with higher THC content which is made for me by a family member who is a grower in MI. Taking it once is not going to tell you much. I sleep like a baby and it definitely does help me a bunch. We are all different so I am not saying it will help you but I do know you have to give it a chance to build up in your system. I have been on it now for 3 months and it is really helping a whole lot. It was suggested by my neurologist who is one of the tops in his field in the eastern U.S. I also take ginger root, Alpha Lipoic acid, apple cider vinegar and Turmeric (3 grams a day) and all of these 4 items can be bought in Walmart pharmacy in CAPSULE form. Just a suggestion. It works for me but might not work for you. Good luck. I wish you well.

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Tks for reply! Have been taking those supplements and more for over a year! Went to cbd dispensary today! For pain, told me to use edibles! Ate one square off chocolate bar ! Seems like it really helped with pain! Numbness still here! No throbbing, cramping toes while driving! In morning, will find out!

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@wilcy

Tks for reply! Have been taking those supplements and more for over a year! Went to cbd dispensary today! For pain, told me to use edibles! Ate one square off chocolate bar ! Seems like it really helped with pain! Numbness still here! No throbbing, cramping toes while driving! In morning, will find out!

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Good to hear of your success. Yes I have to watch for cramps also. If you haven't had any blood work done recently you might want to have your potassium level checked. If your potassium is low you will have cramps and that is something you need to watch because of the possible cardiac issues.

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@gonefishin2743

Good to hear of your success. Yes I have to watch for cramps also. If you haven't had any blood work done recently you might want to have your potassium level checked. If your potassium is low you will have cramps and that is something you need to watch because of the possible cardiac issues.

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Tks, will ck it!

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@artscaping

@wilcy, Hi there, I notice that you started medical cannabis on Jul 8. You thought it would be interesting. I found it a bit overwhelming and intimidating until I found a "guide(s)" to show me the way. It does take quite a bit of experimenting and self-educating. When you went to the dispensary, were there folks to show you all of the options that might be appropriate for your condition? Of course, you do have to remember that you can always have more but you can never have less so start low and go slow.

In 3 years I have had only 2 episodes where I was loopy. Both involved mixing cannabis with alcohol. Now I know…..you just can't risk it. The loopy does go away in about 3 hours and you will be fine.

At this point, I use tinctures, topicals, and a vape cartridge….. no flowers, beverages or edibles. I have worked out a conservative and reliable strategy called Chris's protocol.

I know that product options have increased since I started. Would you be willing to share what products you are using and how you are feeling? If you have a question or two, I would be happy to help if I can.

Please be safe and protected…….Chris

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Used edible yesterday! Seemed to help!

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Hi I have neuropathy and doctor is looking for cause. My ANA blood work came back positive for possible autoimmune disease and I will be seeing a rheumatologist. How does a rheumatologist check for an autoimmune disease? All I know is that I am in pain everywhere and need some answers. I am not diabetic.

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If you have autoimmune disease it is what it is. Finding a cause is not the issue. It is not going to go away. You treat the symptoms and hope for the best. Some things work for some and not for others. It is a crapshoot pretty much. I refuse to take biologics because they cause liver damage. I am not looking to trade one nasty issue for a nastier one. I treat mine all natural. It helps in my case but might not work in yours. Water therapy has been fabulous for my PN. You must exercise because with neuropathy it really is the case of you don't use it you lose it. It feels good also. I take apple cider vinegar, ginger root, Alpha Lipoic Acid, and Turmeric (2-3 grams per day) all in capsule form. I also take CBD with higher THC content. I wish you the very best and God Bless.

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@georgiegirl

The concern I have is that evidently my neuropathy source is not known, according to neurological tests I have been given over the last 26 years. It is not peripheral but eminates from my lower back. I have constant electric zinging up and down my legs and feet with intermittent lightning bolt type jolts when I walk. At night the zinging is most prominent so it’s sometimes difficult to go to sleep. I have used gabapentin over the years but it really does not help. I tried Lyrica but it made me loopy and off balance. Surgery has been suggested with the caveat that there is no guarantee of any real relief. I feel like I will have to live with it but am just looking to see if anyone has come up with ideas of ways they use to calm the electricity down. I would appreciate any thoughts. Thank you.

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I also was on Gabapentin but because of fall issues have switched me to cymbalta. Has any one had good luck with that?

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@summertime4

Hi I have neuropathy and doctor is looking for cause. My ANA blood work came back positive for possible autoimmune disease and I will be seeing a rheumatologist. How does a rheumatologist check for an autoimmune disease? All I know is that I am in pain everywhere and need some answers. I am not diabetic.

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@summertime4 — Here are some of the common lab tests done by a rheumatologist.

Common Lab Tests Ordered by Rheumatologists
https://arapc.com/what-is-rheumatology/common-lab-tests/

I have polymyalgia rheumatica (PMR) which is currently in remission. When it is active, I hurt all over and it's very difficult to walk or move around. My PMR was diagnosed by a Erythrocyte Sedimentation Rate (ESR or sed rate) test and a physical examination by a rheumatologist. PMR is not the only health condition that shares the hurt all over symptoms though.

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@gonefishin2743

If you have autoimmune disease it is what it is. Finding a cause is not the issue. It is not going to go away. You treat the symptoms and hope for the best. Some things work for some and not for others. It is a crapshoot pretty much. I refuse to take biologics because they cause liver damage. I am not looking to trade one nasty issue for a nastier one. I treat mine all natural. It helps in my case but might not work in yours. Water therapy has been fabulous for my PN. You must exercise because with neuropathy it really is the case of you don't use it you lose it. It feels good also. I take apple cider vinegar, ginger root, Alpha Lipoic Acid, and Turmeric (2-3 grams per day) all in capsule form. I also take CBD with higher THC content. I wish you the very best and God Bless.

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Can you tell me what CBD oil brand and strength you use. thanks, I need some relief.

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@gonefishin2743

If you have autoimmune disease it is what it is. Finding a cause is not the issue. It is not going to go away. You treat the symptoms and hope for the best. Some things work for some and not for others. It is a crapshoot pretty much. I refuse to take biologics because they cause liver damage. I am not looking to trade one nasty issue for a nastier one. I treat mine all natural. It helps in my case but might not work in yours. Water therapy has been fabulous for my PN. You must exercise because with neuropathy it really is the case of you don't use it you lose it. It feels good also. I take apple cider vinegar, ginger root, Alpha Lipoic Acid, and Turmeric (2-3 grams per day) all in capsule form. I also take CBD with higher THC content. I wish you the very best and God Bless.

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Thank you gone fishin2743 I believe you are right I had been doing water therapy before diagnosed with neuropathy. Then diagnosed with lymphedema and went to lyphedema therapy. Messed my program all up and now does not think I have lymphedema. I too have my marijuana card and use oil and gummies. Sometimes helps. I thought if they find a reason for the neuroathy they could treat that condition and it would hel. I just don't know anything any more except pain and disappointment.

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