Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

I have not used the CBD oil - in fact I have stopped taking the drops and am using Hemp gummies which seem to do a good job.

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I have found the gummies with hemp oil to take the edge of my painful spots.

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@nanakathy2

I have not used the CBD oil - in fact I have stopped taking the drops and am using Hemp gummies which seem to do a good job.

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Hi NanaKathy2, I am not familiar with Hemp. Can you please tell me how it works for you and where you get it? Gummies sound like a great method of delivery.

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Hi, I’m Aggie 98 but my name is Karen. I’ve just started with Connect. I have severe peripheral neuropathy from my toes to the top of my knees. This popped up over 4 years ago from nowhere, such as I am not diabetic. Actually many specialistS in my part of Texas called it “idiopathic” but I self-referred to the Mayo Clinic in Rochester, MN, because I believe everything has to come from somewhere. They had lots of answers for me but unfortunately no cure and not much help for the pain. I’m so glad I found this group. I am not a whiner, but no one understands chronic pain unless he/she has it. Any advice would be great.
Marijuana is illegal in Texas and I don’t think it will ever change here. I just mention this because some other members have suggested it. Thanks for all of your help.

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@jimhd

@aggie98

Welcome to Connect, Karen. I'm turning 70 in August, but I don't (usually) feel as ancient as that sounds.

Oregon, where I live, legalized marijuana a while ago, both medical and recreational. Trouble is, no doctor in central Oregon will prescribe it, so you have to meet with a doctor who makes the rounds of a bunch of weed stores. She's in my town one day a month, and the last I heard was that the annual visit is around $250.00. Then there's another $250.00 to the state for a permit - also an annual fee. If you can afford that, you still have to buy it, and medical marijuana is very expensive. I suppose that some day insurance will cover it, but at this point it's all on you.

There are products available online that are derived from marijuana. Three of my siblings use CBD oil and swear by it. Rachel, I think, mentioned Chris @artscaping as a helpful resource.

Do you purchase the ingredients for your potion at a store or online? It's great that you have found something that lets you sleep without pain.

Jim

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Hi Jim, I never looked at a health food store for quality essential oils but I had never thought of that. I know a lady who sells these. But I have seen them on Amazon also. The brands I mentioned are pure with no water or fillers. You only need a couple drops in your lotion. They try to sell you “carrier oil or lotion” but I just use any kind from WalMart I have. Copaiba is less expensive and works great.

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@aggie98

Hi Jim, I never looked at a health food store for quality essential oils but I had never thought of that. I know a lady who sells these. But I have seen them on Amazon also. The brands I mentioned are pure with no water or fillers. You only need a couple drops in your lotion. They try to sell you “carrier oil or lotion” but I just use any kind from WalMart I have. Copaiba is less expensive and works great.

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@aggie98 Do you see a pain specialist, Karen? I began treatment with my PCP, but he referred me to a neurologist who had more treatment options. Then, I started seeing a pain specialist, and he had a long list of medications that are usually indicated for other conditions but sometimes help neuropathy pain. We've come to the end of his list, where we landed on Imipramine, and it helps a little, along with morphine sulfate contin. I still have days with pain up to 8 or 9.

I also had 6 sessions with a pain therapist and I found a couple of things that I use when the pain is keeping me awake.

Jim

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@jimhd

@aggie98 Do you see a pain specialist, Karen? I began treatment with my PCP, but he referred me to a neurologist who had more treatment options. Then, I started seeing a pain specialist, and he had a long list of medications that are usually indicated for other conditions but sometimes help neuropathy pain. We've come to the end of his list, where we landed on Imipramine, and it helps a little, along with morphine sulfate contin. I still have days with pain up to 8 or 9.

I also had 6 sessions with a pain therapist and I found a couple of things that I use when the pain is keeping me awake.

Jim

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Hi Jim, Ive been going to a pain doctor here for over 5 years when this PN first started . I was taking Tylenol 4 for years and it really helped. Then when the big Opiod Crisis was announced, this guy took ALL of his patients off pain meds. All he wants to do is epidural steroid injections which is not what I need. I live in a big college town and he’s the only one here. I felt really bad for a lot of older people who were in worse shape than me.

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@aggie98

Hi Jim, Ive been going to a pain doctor here for over 5 years when this PN first started . I was taking Tylenol 4 for years and it really helped. Then when the big Opiod Crisis was announced, this guy took ALL of his patients off pain meds. All he wants to do is epidural steroid injections which is not what I need. I live in a big college town and he’s the only one here. I felt really bad for a lot of older people who were in worse shape than me.

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@aggie98 Hi Karen I see you do some essential oils for pain I have mixed oils for my pain in cream I like peppermint. ,Lavender a few drops in a lotion Frankencense is good also.Never used Copaiba have to try that I also found all my pain Dr wanted to do was injection or a stimulator So I use the essential oils and heating pad .Take care

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@aggie98

Hi, I’m Aggie 98 but my name is Karen. I’ve just started with Connect. I have severe peripheral neuropathy from my toes to the top of my knees. This popped up over 4 years ago from nowhere, such as I am not diabetic. Actually many specialistS in my part of Texas called it “idiopathic” but I self-referred to the Mayo Clinic in Rochester, MN, because I believe everything has to come from somewhere. They had lots of answers for me but unfortunately no cure and not much help for the pain. I’m so glad I found this group. I am not a whiner, but no one understands chronic pain unless he/she has it. Any advice would be great.
Marijuana is illegal in Texas and I don’t think it will ever change here. I just mention this because some other members have suggested it. Thanks for all of your help.

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Good morning @aggie98, Just started with Connect and look how much you have done. Knowledge is power and you are a knowledge seeker. Would you like to share some of the recommendations from your clinicians at Mayo Rochester. I think @johnbishop also sought a diagnosis from Mayo and it was similar to yours.

Before I forget.....Doterra’s “Adaptive” has been helpful for the tingles and itches.

The most difficult thing to achieve is acceptance. Acceptance of the fact that at this time there is no cure for neuropathy in all of its formats is so difficult. The search for relief leads folks to spend time and money chasing a vision of cure that doesn’t exist, at least not yet. We need more funding for research and yet there is a pretty long line in front of us.

Here’s my best for right now.....learn mindfulness so that you can redirect the sensations in your body or even mask them. Meditation gives your brain a rest from coping with discomfort. And my third relief strategy is restorative yoga.

Another knowledge seeker is @rwinney. She relentlessly travels down any path that might lead to a more productive and rewarding life. When she hits a brick wall, she has only to let us know and we help her pick herself up and find another option to explore and share with all of us.

Let me know what is showing signs of calming your body and relaxing your mind. They are connected....mind, body, and spirit. We just need to get them marching to the same drummer.

May you have happiness and the causes of happiness Karen.
Chris

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@aggie98

Hi Jim, Ive been going to a pain doctor here for over 5 years when this PN first started . I was taking Tylenol 4 for years and it really helped. Then when the big Opiod Crisis was announced, this guy took ALL of his patients off pain meds. All he wants to do is epidural steroid injections which is not what I need. I live in a big college town and he’s the only one here. I felt really bad for a lot of older people who were in worse shape than me.

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@aggie98 I'm glad that so far there isn't a total ban on opioids, but the state regulators put ridiculously low limits on them. I think that people who have intractable pain and have been helped only by an opioid, and have been taking them long term, are given an exemption so they don't get cut off. My doctor's clinic directors set a limit of 100mg per day, which impacted a lot of people. Some pharmacies will only dispense a 7 day scrip, but again, they make exceptions for people who have been taking it long term.

It's unconscionable that a medication that's the only one that treats a person's chronic pain is suddenly unavailable. I hope you were warned in time to be able to taper off and I hope other medications were offered.

My experience with a spinal cord stimulator was a good one, but only for a couple of years. My understanding is that, for the most part, they become ineffective in time.

Jim

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