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?

@cocodab

I believe there is much good with CDC/THC. The medical field should learn and keep an open mind. Bottom line enough is not being done with people with pain and or I feel to help listen be Compassionate and even make us oable to operate if possible.

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I know very little about medical marijuana but I know that because it is still NOT legal by the Federal government, NIH and others may not do research on the value of it in the treatment of various diseases. I went to a presentation by a highly regarded internist in the Washington, DC metropolitan area and he mentioned that there were a few areas where the use of medical marijuana had shown some promise, one of which was PN. I spoke with him afterward and he thought i would be a good candidate. In my state it is legal and you first need to apply for an identification card (which verifies that you are a resident of state). Once that is in hand you can go to a dispensary to get marijuana in different forms and be guided by those in the dispensary. Or, as I prefer, go to a doctor who has been registered to prescribe medical marijuana. You pay a fee, they do a brief history and physical and guide you on what to take and I believe follow your progress. i am awaiting my id. so am just beginning the process but will be happy to share my experience.

To move forward on research, Federal legalization is necessary. Never thought I would be an advocate but my mind is certainly open to that possibility.

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@resawaller

God bless you! I am in the boat as you going on 2 yrs now! And the pain never goes away! I pray to God please just give me one day, one hour,one min. Without pain,but no it just keeps getting worst every damn day I wake up it's there, I go to sleep, it's there! You are not alone! Right now I feel like throwing my phone across the room,from this stupid nerve damage i have ! I will pray for you,and I'm so very sorry you are the same as me,cause I know how bad it sucks! I don't feel like doing anything and I'm only 54 but feel 90! God bless you!

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I appreciate you sharing your feelings.

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@artscaping

Good evening Rachel @rwinney. I have now read your post several times. You have always been upbeat about your own pain and discomfort, compassionate and caring to others about their challenges. You are strong and persistent, open to researching and listening. Each trial of a treatment or medication was approached with a sense of good planning and an expectation of success. Too optimistic?…perhaps, too hopeful? aren't we all?

You have always been trying to figure out what type of neuropathy you had and what caused it.

You were not going to settle for idiopathic. I have been there…..and now I am waking up in the morning to greater pain not only in my feet and ankles but also popping up over my knees.

How did it get that far this fast? Why are my wrists so cranky? How do I know the barometer reading every day without looking?

And then there is the self-doubt….don't these people know I am in a 6-8 pain level all the time? I better not tell them or they might not want to hang out with me, see me as a PITA.

Why am I more comfortable just staying at home? I know…..I don't have to worry about finding or taking my medication, I don't have to worry about running out of steam and just losing it in a restaurant or at a friend's house.

Let's focus on what you do know about yourself and the treatments/medications that are available to you today. Can you lay out a plan that assigns dosages or levels to your needs throughout the day?

I think we can become more pain tolerant to a certain extent with distractions, activities, mindfulness, and meditation. My spiritual guru, Patsy, would tell you that you have to acknowledge the pain if you want to have some control over it.

I am ready to sleep now, so will say goodnight. May you be free of suffering and the causes of suffering dear Rachel. I am here for you. Chris

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Thanks so much Chris for responding. You continue to be a positive role model.

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@aponce

I know very little about medical marijuana but I know that because it is still NOT legal by the Federal government, NIH and others may not do research on the value of it in the treatment of various diseases. I went to a presentation by a highly regarded internist in the Washington, DC metropolitan area and he mentioned that there were a few areas where the use of medical marijuana had shown some promise, one of which was PN. I spoke with him afterward and he thought i would be a good candidate. In my state it is legal and you first need to apply for an identification card (which verifies that you are a resident of state). Once that is in hand you can go to a dispensary to get marijuana in different forms and be guided by those in the dispensary. Or, as I prefer, go to a doctor who has been registered to prescribe medical marijuana. You pay a fee, they do a brief history and physical and guide you on what to take and I believe follow your progress. i am awaiting my id. so am just beginning the process but will be happy to share my experience.

To move forward on research, Federal legalization is necessary. Never thought I would be an advocate but my mind is certainly open to that possibility.

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I found a State registered prescribing Dr who qualified me for a medical marijuana license. That cost $250. Then I visited my local dispensery and paid $212 (after 25% discount for new customer) to walk out the door with 2 bottles of oil. 2 weeks later I needed to reorder the THC dominant oil then the following week needed to reorder the CBD dominant oil. Another approx $250 as now the discount is only 15%. Good news is that same day delivery to door is built in to overall cost. As I understand it, my cost should decrease once I find an acceptable dose and can streamline products to be cost-effective. Its a very expensive endeavor but I chose this way in order to eliminate my second guessing and to benefit from an experienced pharmacist.

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@jimhd

@cocodab
@rwinney
A year or two ago my PCP told me that if he learned that I was using any cannabis product he would stop prescribing morphine sulfate contin, Klonopin and Percocet. That pretty much ended any consideration of medical marijuana and CBD oil and all of the things so many people have found very helpful. My pain specialist told me that he would prescribe medical marijuana if the group he's with would permit it, but they set a policy that prevents it. So, even though Oregon legalized cannabis, very few doctors are willing to write a medical marijuana permit. The only one that I know of is a partner with many dispensaries and runs a circuit of towns, and is in my town once a month. He's got a pretty slick thing going.

Jim

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Unfortunate, I wanted to try but can’t give up what you know for unknown.
Thank you for sharing it clarifies much.

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@rwinney

I found a State registered prescribing Dr who qualified me for a medical marijuana license. That cost $250. Then I visited my local dispensery and paid $212 (after 25% discount for new customer) to walk out the door with 2 bottles of oil. 2 weeks later I needed to reorder the THC dominant oil then the following week needed to reorder the CBD dominant oil. Another approx $250 as now the discount is only 15%. Good news is that same day delivery to door is built in to overall cost. As I understand it, my cost should decrease once I find an acceptable dose and can streamline products to be cost-effective. Its a very expensive endeavor but I chose this way in order to eliminate my second guessing and to benefit from an experienced pharmacist.

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@rwinney Wow, that's pretty pricey! You mention a license; is that to grow marijuana or just a card permitting you to purchase product? Do you mind telling me in what state you live?

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@rwinney

Thanks so much Chris for responding. You continue to be a positive role model.

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Hey there, good afternoon @rwinney, How are you feeling today? I had a thought this morning. I think that you analyzed the no cure issue well. So instead of waiting fruitlessly for a pain-free outcome, perhaps it is best to work toward managed pain. We know it is there, we tolerate what we can and medicate and/or treat what we cannot. Be at ease today, Chris

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@aponce

I know very little about medical marijuana but I know that because it is still NOT legal by the Federal government, NIH and others may not do research on the value of it in the treatment of various diseases. I went to a presentation by a highly regarded internist in the Washington, DC metropolitan area and he mentioned that there were a few areas where the use of medical marijuana had shown some promise, one of which was PN. I spoke with him afterward and he thought i would be a good candidate. In my state it is legal and you first need to apply for an identification card (which verifies that you are a resident of state). Once that is in hand you can go to a dispensary to get marijuana in different forms and be guided by those in the dispensary. Or, as I prefer, go to a doctor who has been registered to prescribe medical marijuana. You pay a fee, they do a brief history and physical and guide you on what to take and I believe follow your progress. i am awaiting my id. so am just beginning the process but will be happy to share my experience.

To move forward on research, Federal legalization is necessary. Never thought I would be an advocate but my mind is certainly open to that possibility.

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Good afternoon @aponce, this is a well written and knowledgeable post. Thank you. I know that medical cannabis has been a good alternative for pain management, at least with my small fiber neuropathy (SFN) and Chronic Myofascial Pain. And you are correct, research efforts will have to wait for the federal government. The other thing that legalization will do is ensure that all medical cannabis products submit to regulator approval for consistency and prescribing accuracy. I join you in becoming an advocate. Chris

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@rwinney

I found a State registered prescribing Dr who qualified me for a medical marijuana license. That cost $250. Then I visited my local dispensery and paid $212 (after 25% discount for new customer) to walk out the door with 2 bottles of oil. 2 weeks later I needed to reorder the THC dominant oil then the following week needed to reorder the CBD dominant oil. Another approx $250 as now the discount is only 15%. Good news is that same day delivery to door is built in to overall cost. As I understand it, my cost should decrease once I find an acceptable dose and can streamline products to be cost-effective. Its a very expensive endeavor but I chose this way in order to eliminate my second guessing and to benefit from an experienced pharmacist.

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Good afternoon, @rwinney, Just saw this post….isn't this a lot more than the amounts I gave you that I pay? Are you creating your own dosage ratios from the two tinctures? What is the legalization picture in your state? Chris….keeping on, moving on…..

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@artscaping

Hey there, good afternoon @rwinney, How are you feeling today? I had a thought this morning. I think that you analyzed the no cure issue well. So instead of waiting fruitlessly for a pain-free outcome, perhaps it is best to work toward managed pain. We know it is there, we tolerate what we can and medicate and/or treat what we cannot. Be at ease today, Chris

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Hello
I'm working towards an acceptable pain management plan and realize I'm never going to live in a pain free zone. I've lived with tolerable pain and functioned for several years. However, these past couple of years, I've lost more ability, function and independence without having my pain managed effectively. Continuously trying to be at ease. Thank you. You as well Chris.

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@artscaping

Good afternoon, @rwinney, Just saw this post….isn't this a lot more than the amounts I gave you that I pay? Are you creating your own dosage ratios from the two tinctures? What is the legalization picture in your state? Chris….keeping on, moving on…..

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CBD:THC 19:1 has stayed consistent at 0.3ml 3x day

THC:CBD 20:1 9.5 mg is now .10ml (1 full dropper) 3x day

I'm on a steady climb of THC waiting to find my potential sweet spot. Yes, I believe its more than you mentioned. If I find my effective combo I'm told it will get cheaper and I can choose an oral pill (which is my preference). Can order independently as well when I'm comfortable in my knowledge. My State is legal…is that what you mean?

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@rwinney

Hello, you mention that you remain on Percocet with cbd/thc. I'm trying to find a proper dosing of CBD dominant and THC dominant oils that take care of my intensely growing and debilitating pain. Although I'm still experimenting and won't give up hope quite yet, my body and track record prove that Im not your average case…as confirmed by the dispensary pharmacist. My fear is over medication. I have not been able to reduce my hydrocodone intake for pain despite adding the medical marijuana or lidocaine infusions or myofascial release or 50,000 supplements or heat or ice or rest or Lyrica or Duloxetine. My neuropathy continues to progress. I continue to be fooled by the thought that this new way of living is temporary, will be fixed or helped with B12 or any of the above mentioned. Mind you it all plays a collective role but not enough, bottom line. I've really tried hard to understate my pain and circumstance in hopes of slowing progression by simply being optimistic. I have rolled with each punch thinking it will stop, it will slow, it will improve…I'm not as bad as I think. I've compared myself to many others which is never a good thing to do because I set myself up for disappointment and frustration when I hear someone could do something I can't like work, drive, walk, exercise, stretch. I feel like the life is slowly getting sucked out of me. I'm becomming housebound and reclusive due to pain and honestly am baffled, dumbfounded, befuddled at my physical being and how my once active, able and willing life has made this turn. I've held it back but I'm saying it now…I'm scared. I was scared 2 years ago, I was scared a year ago and I'm more scared now after feeling what 3 years has done to my body. I will turn 50 in March and honestly will accept that age easily as it is the least of my worries. Thanks for listening.
Rachel

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@rwinney

Unfortunately, I don’t have any advice to offer. I just wanted to say that I’m so very sorry for what you’re going through physically and emotionally. Please know that I’m thinking of you and I’m so hopeful that you will find a pain management approach that is safe and beneficial for you. Sending lots of virtual hugs your way. 🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗

Kia

Liked by rwinney

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Oregon: cannabis is legal. The recreational dosage is too low for medical use, and there's a limit per day. It would mean going to the dispensary several times to get enough recreational marijuana to serve a medical purpose. For medical marijuana, a doctor comes to town one day a month – $300 for the appointment and prescription. Then the state gets its cut at $300 annually, for a permit card, plus a high tax on the product. Then there's the cost of the product, which isn't cheap, but the mm is regulated, so at least you can be reasonably sure that what you get is safe.

Jim

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@rwinney

Hello, you mention that you remain on Percocet with cbd/thc. I'm trying to find a proper dosing of CBD dominant and THC dominant oils that take care of my intensely growing and debilitating pain. Although I'm still experimenting and won't give up hope quite yet, my body and track record prove that Im not your average case…as confirmed by the dispensary pharmacist. My fear is over medication. I have not been able to reduce my hydrocodone intake for pain despite adding the medical marijuana or lidocaine infusions or myofascial release or 50,000 supplements or heat or ice or rest or Lyrica or Duloxetine. My neuropathy continues to progress. I continue to be fooled by the thought that this new way of living is temporary, will be fixed or helped with B12 or any of the above mentioned. Mind you it all plays a collective role but not enough, bottom line. I've really tried hard to understate my pain and circumstance in hopes of slowing progression by simply being optimistic. I have rolled with each punch thinking it will stop, it will slow, it will improve…I'm not as bad as I think. I've compared myself to many others which is never a good thing to do because I set myself up for disappointment and frustration when I hear someone could do something I can't like work, drive, walk, exercise, stretch. I feel like the life is slowly getting sucked out of me. I'm becomming housebound and reclusive due to pain and honestly am baffled, dumbfounded, befuddled at my physical being and how my once active, able and willing life has made this turn. I've held it back but I'm saying it now…I'm scared. I was scared 2 years ago, I was scared a year ago and I'm more scared now after feeling what 3 years has done to my body. I will turn 50 in March and honestly will accept that age easily as it is the least of my worries. Thanks for listening.
Rachel

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@rwinney Hi Rachel. I understand scared, completely. Chronic pain is like living in some kind of altered state. Chronic pain perplexes me, as I used to heal from things quite easily. I wonder how there is never any healing. I wonder how to live this way. I read how limited you are, and it is heart breaking. I haven't a clue what to even say, except that I hear you and I understand. I feel your vitality, your passion, your drive. I feel your heart. How could we be put on earth to suffer? On a practical note, I ordered conolidine, and it should be at my house in a week or so. I will post to everyone how it works. Just took CBD, and pain is better, but now so sleepy. As you know, I will be trying B12 shots, and shortly after, low dose naltrexone. I will post to everyone about those things, too. Pain is not for sissies. I like so much that we can share…….I am thinking of you…..what else can I say? Lori R.

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@rwinney

Hello, you mention that you remain on Percocet with cbd/thc. I'm trying to find a proper dosing of CBD dominant and THC dominant oils that take care of my intensely growing and debilitating pain. Although I'm still experimenting and won't give up hope quite yet, my body and track record prove that Im not your average case…as confirmed by the dispensary pharmacist. My fear is over medication. I have not been able to reduce my hydrocodone intake for pain despite adding the medical marijuana or lidocaine infusions or myofascial release or 50,000 supplements or heat or ice or rest or Lyrica or Duloxetine. My neuropathy continues to progress. I continue to be fooled by the thought that this new way of living is temporary, will be fixed or helped with B12 or any of the above mentioned. Mind you it all plays a collective role but not enough, bottom line. I've really tried hard to understate my pain and circumstance in hopes of slowing progression by simply being optimistic. I have rolled with each punch thinking it will stop, it will slow, it will improve…I'm not as bad as I think. I've compared myself to many others which is never a good thing to do because I set myself up for disappointment and frustration when I hear someone could do something I can't like work, drive, walk, exercise, stretch. I feel like the life is slowly getting sucked out of me. I'm becomming housebound and reclusive due to pain and honestly am baffled, dumbfounded, befuddled at my physical being and how my once active, able and willing life has made this turn. I've held it back but I'm saying it now…I'm scared. I was scared 2 years ago, I was scared a year ago and I'm more scared now after feeling what 3 years has done to my body. I will turn 50 in March and honestly will accept that age easily as it is the least of my worries. Thanks for listening.
Rachel

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Am also on medical marijuana! Am still trying to find one for pain and not getting spaced out! Your correct, totally screws up social life! Can’t go anywhere! Can’t walk 50 feet!

Liked by rwinney

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