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?

@gmaw, Thank you for this information. This appears to be a reliable strain. It also looks like you have done your experimenting and chosen your medical cannabis safety net.

I have small fiber neuropathy (sfn). I use both topicals and have recently mastered the sublingual dosing. Just a few minutes held under your tongue so it goes through the membrane quickly…..3 times a day. Then come the topicals for hands, wrists, and feet.

Congratulations to you for being pain med free. That also means that you are probably free of fear and anxiety about the pain. Since fear and anxiety cause more pain, you have chosen a significantly more effective path.

Please share significant changes and new knowledge. Have a joyful day. Chris

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@pfbacon

I'm about finished. I'm at the point where the pain is intolerable. The Pain Doctor increased my medicines, I took it for a few days and could not wake up – I lost 2 days of what's left of my life. I had to retreat to the previous dose – it's still inadequate and my life isn't worth waking up for. Is Euthanasia legal yet? Anywhere? Peggy

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I am so, so sorry for all that your are going through. I am sure the combination of pain, meds and frustration is taking its toll!
Please do not do anything harsh that you might regret later. Speak with your doctor and try to come up with a plan that might work better for you!

You are in my prayers!
Ronnie (GRANDMAr)

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@sallymagint

I’ve had a number of trauma injuries over 45 years of life which have resulted in some significant nerve damage. Although I’ve seen many Specialist there has been no specific type of neuropathy diagnosis, although most is peripheral, because there’s always been more pressing issues to contend with which steers Investigations in other directions.

I had a spinal injury 25 years ago and fractured 3 vertebrae after a fall on a working holiday in England. At the time although I knew I’d hurt myself I continued to backpack with a 25 kilo backpack around Europe. Hindsights a great thing but when we’re young we believe we’re infallable. A spinal fusion followed 6mths after I returned home. I suffered nerve damage and I’ve had 3 dorsal Column stimulators implanted over 20 years to help with nerve pain.
I’ve had a number of other injuries which resulted in ongoing nerve problems. I broke both ankles (at different times) which were pinned and put in casts. The plaster had to removed with both due to severe nerve pain affecting the external parts of my ankle. I couldn’t stand to have anything touch my ankle for at least 6 mths, no shoes, no sheet/blanket and at times even having my foot in water whether it be the shower, bath, pool was excruciating. Lots of desensitisation work to help my alter my bodies response to stimulus of any sort.
I had severe type 2 diabetes for which I was on insulin for over 5 years. I’m happy to say this is now controlled through diet and lifestyle change and I no longer have any medications to treat this.
I have moderate degeneration of thoracic and cervical spine with neuralgia affecting my strength and body’s response (over sensitive or sometimes lack of sensation) to stimuli.
I also have a Chiari Malformation which was diagnosed after a head injury. I stood up and became dizzy, fell and was knocked out on the TV cabinet on the way down. It’s believed the impact forced my brain through my skull and into my Spinal canal. A previous cranial CT before the accident did not show a Chiari which is how this reasoning was attained. In addition to Chiari it is suspected I have Syringomyelia (Syrinx or cysts on the spinal canal) which affects my strength and alters many sensations sometimes causing intense pain other times resulting in paralysis. The Syrinx if not treated appropriately may continue to cause irreversible damage. Because of my dorsal column stimulator I have been unable to have MRI scans which has meant some diagnosis can not be ascertained. The decision has been reached to remove the device so MRI’s can be taken which will happen in the next couple of weeks. I will then fly interstate in Australia to have decompression surgery and possible fusion of cervical spine. They will also decide how to treat the Syrinx. I have facial neuropathy which results in severe facial pain that brings me to the ground it is so severe. In combination with pain I have paralysis in my face, again my face responds in different ways to stimuli.

My team of specialists are somewhat baffled by the complexity of my conditions but they are slowly being able to bring it a together and gain a better understanding of what’s going on and why. That’s it in a nutshell, there’s more to it but these are the basics. Hope this gives a bit of insight

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I feel your pain. Thanks be to God, I've had no broken bones but four fusions and eight knee operations put me in your league of polyneuropathy. I lived on Oxycontin, Lyrica, Baclofen, and Amitriptyline. The side effects of the abuse of Oxy have made life a living hell here in the State of TN. It was bad enough that my GP was forced to discontinue prescribing Oxycontin by my state, but now they are forcing pain clinics to close or jump through a maze of hoops to stay in business. I had a manageable quality of life until May 8th when the State of TN forced the closure of my last pain clinic. I am now on a two-year waiting list just to get into another clinic. All of that time without the Oxycontin that I was living on.

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Thank you all. I'm not depressed, just can't take the pain any more. When military prisoners are tortured, they look for something sharp to cut their veins with when they can't take the pain any more. That's just what humans do. The pain must be stopped when it can no longer be endured. I wish politicians would think about this before they made draconian laws restricting what doctors can do for their patients. I had a good life, I don't have young children or grandchildren. I have friends and a husband but they are not dependent on me. I still need to know about euthanasia. I knew Doctor Kavorkian's cousin, Chevalia, but they have both passed away. PS I understand about the difficulty of getting medicine. The whole country seems to have gone kookoo about opiates – everyone who says the word 'pain' is considered to be an addict and a criminal until they prove themselves innocent. Peggy

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@pfbacon

Thank you all. I'm not depressed, just can't take the pain any more. When military prisoners are tortured, they look for something sharp to cut their veins with when they can't take the pain any more. That's just what humans do. The pain must be stopped when it can no longer be endured. I wish politicians would think about this before they made draconian laws restricting what doctors can do for their patients. I had a good life, I don't have young children or grandchildren. I have friends and a husband but they are not dependent on me. I still need to know about euthanasia. I knew Doctor Kavorkian's cousin, Chevalia, but they have both passed away. PS I understand about the difficulty of getting medicine. The whole country seems to have gone kookoo about opiates – everyone who says the word 'pain' is considered to be an addict and a criminal until they prove themselves innocent. Peggy

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Hi
I know how you feel. I too have neuropathy and constant pain. I’ll be praying for you dear lady xxx

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to @pfbacon please look further for pain management. I truly understand what you are saying. Pain, pain and then more pain. It makes a person want to quit. Maybe it can make us fight stronger and longer. I know nothing about your situation besides the pain. That I understand. Sometimes pain is intensified by the pain. This makes sense to me. The more frustrated, angry, resentful we get the more the pain works on us. We not only need pain meds to rid the pain we also have to fight with our frame of mind. The more depressed, angry and the more I bottle up my feeling. the more intense my pain gets. Pain knows us. It is like the devil. It gets in when we give it any opening. I cannot tell you what to do but I can suggest some things I am willing to try because I recently found myself saying "I;m done" I am going to try acupuncture and return to grief counseling. I have stuffed my feeling and the pain came in like the devil. I am not naive enough to think this will be the end of my pain but I am going in with the believe that I am fighting this demon back. Please stay with us. Please give us more information about yourself. We care.

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@pfbacon

Thank you all. I'm not depressed, just can't take the pain any more. When military prisoners are tortured, they look for something sharp to cut their veins with when they can't take the pain any more. That's just what humans do. The pain must be stopped when it can no longer be endured. I wish politicians would think about this before they made draconian laws restricting what doctors can do for their patients. I had a good life, I don't have young children or grandchildren. I have friends and a husband but they are not dependent on me. I still need to know about euthanasia. I knew Doctor Kavorkian's cousin, Chevalia, but they have both passed away. PS I understand about the difficulty of getting medicine. The whole country seems to have gone kookoo about opiates – everyone who says the word 'pain' is considered to be an addict and a criminal until they prove themselves innocent. Peggy

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Your right! It’s all about cya ! Some one says you might get addicted! So what? Am 70 !

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Thank you, that's sweet. I'm not upset, there's just nothing left to try, well, there is one more thing: my pain doctor gave me a rx for a serotonin reuptake inhibitor that has the side affect of doing something for the nervous system, it's Duloxetine. He called it cymbalta but the drug store gave me generic. I will start take one tomorrow. I agree with wilcy (who cares if old people who are terminal get 'addicted'?) and sympathize with brojoe (I don't know what you are doing to stand the pain). And I don't know why the government wants addicts to stop taking drugs. I know a few who quit – it's not that hard. And I know some people who have adult children who live for nothing except drugs – every time they come out of rehab, they head right for drugs, and right back to lying and stealing. They know they will die soon, they want to. I wish the government would just let them have what they want and let their parents stop suffering. Peggy

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Am going to start medical marijuana tomorrow! Finally got my card! Will be interesting!

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Pain is unbearable and people not giving proper medication to help ease it is unbelievable. I have pain 24/7. I have found that it is key to relax the mind and body. Unthought medications are necessary you will also always need more so you will have to become mentally tough and find a happy place. Take time for yourself and do and find what makes you happy. It’s been nine years for me I am getting worse everyday but I’m trying to stay calm spend a lot of time with my favorite few people and my cats coco and Smokey that don’t expect anything from me. That’s all I can give. I will hope you turn the corner.

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@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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@cocodab

I can’t see being able to come off it unless they come up with new medicine. My condition is getting worse. Simply task are difficult, walk on some days is horrific and I seem to leave the house now less and less. I have allergy to any sulfa type-based medication allergic to now gaban.
No fun waking up like this.

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I also have many allergies to medications. I have Complex Regional Pain Syndrome in both feet and my left knee, as well as small fiber neuropathy from the knees down. Just had nerve studies done and was dx with severe distal sensory and motor neuropathy. Lots of pain involved. Last July I had my second spinal cord stimulator implanted. My first was done in 2012. I seldom take my oxycodone. I also have DDD throughout my spine and see pain management on a regular basis. I find radio frequency ablation rids me of pain from 6 months to two years! I am blessed to have an incredible pain management doctor who is brilliant, suffers from pain himself, is very caring, and has a great positive attitude.

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