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Colleen Young (@colleenyoung)

Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 20 hours ago | Replies (3770)

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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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Replies to "Hello, you mention that you remain on Percocet with cbd/thc. I'm trying to find a proper..."

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!

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

@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

@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.

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!