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Old 08-10-2018, 12:50 PM #11
DavidHC DavidHC is offline
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Thank you for sharing your experience. It was nice to read this. It's great that cannabis has been so effective for you.

I'm really not surprised about THC being so effective as an analgesic. The pain relieving properties of THC are well documented, and when combined with CBD and even other cannabinoids and terpenes, the effect is even greater.

I have nothing against THC, and use it at night for sleep, usually with much high CBD strains. It definitely rubs some people the wrong way, but I've convinced that at least in some cases it's due to them using strains that are extremely high in THC and very low in CBD.

As for the dispensary saying such things, that's just false, as you seem to recognize. CBD is CBD. The only difference between hemp and MJ is that the former has been grown for other properties and for low THC content. Both plants have all the cannabinoids and a variety of terpenes.

If you try a tincture with MCT oil, it will be less viscous. That might help. Alcohol is not ideal as you know. Maybe Bluebird, Lazarus, or Fully Activated would be worth a try. Fully activated also has a great salve, so you might like that given your appreciation of the topicals.

But it seems like you know what works for you, so you should definitely go with that. For the most part I've also figured out what works for me, so it's going well. I'm really glad this plant has helped us both.



Quote:
Originally Posted by KnowNothingJon View Post
I joined the NYS medical marijuana program last year. I went in thinking, "they are going to give me CBD" and was met with, THC laid out as the likely course and a 1:1 THC/CBD tincture to start.

NYS is a no combustion state and they are slow on titrating (which was great, save the wait for the vaporizer for break through). I understand the idea, it makes sense, though feels fastidious at times.

Over the course of the first year I dropped Topamax and Lyrica from my medication plan and I have greatly curbed Tramadol since the addition of the vape pen.

I take 3-4 capsules of 20:1 THC/CBD daily 9.5/.5. The vape pen I use in between when needed and it has aided my sleep, which while spotty does not include a first hour wake up for the first time in years. I have plenty of hard moments, but I also have something that was absent for years despite my drive, effort- I have hope again.

I pass out less after work. I have more good moments.

I have taken to CBD salves for muscle issues and I wish NYS offered some strains in acceptable forms that have been groomed for my symptoms- likely an indica as they are CBD dominant. I am grateful, but wish they did more. Changes have happened, as capsules are newer im NYS, but work should be done on accessibilty- it is pricey and there are waits for certification. I waited 5 minths for an appointment.

Do I think CBD is worthwhile to look into- yes. One thing discussed at my quarterly check ins with my provider is each persons biology reacts differently. The dispensary pushes CBD from hemp is fifferent, but I do not know the veracity of that statement. I tried CBD from a local health food store- it was pricey and in olive oil, so it coated my mouth, which I really hated.

The tinctures I used prior to the capsules at the dispensary were alcohol based- which I didn't love, but they also didn't coat my mouth.

I am happy that the CBD is working for you, David. It certainly seems like a reasonable thing to try first- and I love the CBD salves- though I have found THC as an analgesic has been a boon.

Some people have very intense encounters with THC. It is certainly not for everyone, just like Neurotin rubbed me the wrong way.
My best,

Jon
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Old 08-10-2018, 12:57 PM #12
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Hah! That's great. You're welcome.

I hope it helps you. What did you order from where? I'm just curious.

I'm sorry though to hear you're having more pain. It's effective for pain for sure, usually at higher doses. Dosing is difficult since it's different for each person. But I guess a good rule of thumb is to start low and slow and increase the dose. I take about 100-200 mg a day, and more when I have more pain. You'll have to experiment, but we're experts in that at this point, aren't we?


Quote:
Originally Posted by janieg View Post
Thank for the informative post! As coincidence would have it, I just ordered some CBD oil a few days ago. Am still waiting for it to arrive.

I had tried it before without much success, but I really didn't know how much I should be a taking. I'm giving it another shot now with more education...as well as more non-neuropathic pain.

Fingers crossed for good results.
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Cliffman (08-11-2018)
Old 08-11-2018, 08:12 AM #13
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David,

I'm so pleased to see you back on here helping others! Your presence here is so invaluable.

I can't thank you enough for sharing your experience with CBD. More importantly, it's great to read how much it's helped you and the others on this thread.

Thanks again,

Cliffman
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DavidHC (08-11-2018)
Old 08-11-2018, 09:57 AM #14
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Hi Cliff!

It's always nice hearing from you. Thank you for the nice things you say.

I'm really just happy to share what has worked for me and for at least some others. We're all searching for something that can help improve our lives despite this terrible illness (or sets of illnesses).

So I'm happy to speak about CBD and what it has done for me and many others, and it'll all be worth it even if it helps just one person on here. I received my share of help on here during difficult times, and I'll never forget that.

I hope it helps you too. If you think I can be any help, just let me know.

Dave
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Old 08-11-2018, 10:36 PM #15
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Hi there, I just got some 600 mg. CBD oil, and with the info y'all provided in this thread, I feel good about giving it a try. I am extremely arthritic, have a broken neck from about 60 years ago, have carpal tunnel in both hands, pain and severe numbness in legs, feet, arms, etc etc etc... This is quite alarming as these conditions are worsening every day. Obviously something is going on, and I'm not looking forward to the inevitable doctor's visit. Truthfully, I don't even know how to describe what is happening to a doctor, or even what kind of doctor to see.

Thanks for being here,

Dixie1234
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DavidHC (08-12-2018)
Old 08-12-2018, 10:37 AM #16
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Hi Dixie1234,

First off, I'm sorry to hear that you're suffering the way you are. This is not an easy disease to live with, but it is possible, and there are ways of making life enjoyable certainly at times, despite it all. We're also here to help each other.

Reducing stress and expectation (whether good or bad) will help. But we all know that's easier said than done. All I know is that overtime I've learned to live with this, well somewhat, and CBD has also made a noticeable difference for me over the last few months. It has helped with my numbness thanks to the analgesic qualities it has and that it's a vasodilator. So my hands and feet feel better. I also have disc issues in my neck and it was helped reduce the stress/tension I feel there. CBD's benefits for those with arthritis are well documented too, certainly with plenty of anecdotal reports. My parents use it for this. For this, a combination of a tincture and topical product are best, so that might be worth considering.

Just be sure that you're using a quality product because there are lots of bad ones and scams out there. Look for reviews and 3rd party testing. I've recommended some on here, I think, but if I can help, just get in touch.

Sadly, I've realized doctors are completely useless with this condition, at least in my case, but also in so many others. They almost always stop short of any serious efforts to determine the cause of the neuropathy, and just recommend horrible medications intended to treat nothing more than the symptoms, and these are often ineffective. But I've found one doctor in all this who has at least been willing to search out the cause even though so far we've been unsuccessful. The best advice I can give to anyone in this situation is to not give up and be their own advocate, both with the doctors and in trying new things that might help.

Good luck!
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Old 08-12-2018, 03:33 PM #17
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David hello! I have just discovered two things. One is that I have an app called t and it has over 20 unopened posts on it! I must have got it years ago but never registered and then not seen it somehow?

The second thing I’ve found is this post of yours - which is fabulous on all fronts.

There have been some big news items in the U.K (I’m in Scotland) about the legalities of allowing doctors to prescribe medical cannabis at their discretion. But I don’t know if I would qualify or not. I also have been too knocked out by my autoimmunity lately to research or remotely grasp the complexities of the types, the strength and dosages etc.

But I do have a very similar, if not identical, all body SFN - with tremors, shakes, vibrations all over the place.

I’m newly under a neuro physiotherapist and she implied that she thinks I have Parkinson’s as well as Sjögren’s and Hashimoto’s. I think this is unlikely myself - I think these inflammatory neuropathies I have - and you may also have - can manifest as movement disorders when the damage is very diffuse and extensive.

The new final frontier my SFN has recently crossed is my pubic, genital and groin area. It’s absolutely horrible and I have finally agreed to try Lyrica. I’m stepping up my doses slowly - still on relatively small amount of 100mg daily. So far it appears to be helping the pelvic pain and lower back pain a bit but I’m whacked out on it, also eating too much and I can’t afford weight gain.

So I’d go for CBD oil over Lyrica and was resolved to ask if I get nowhere with my rheumatologist and new neurologist later this month. But I need to do good research and will start by saving this post. And I would only take it if my doctors either agree to allow me to or even prescribe it for me - or if I feel they are continuing to bounce me about like a bad parcel no one wants to open.

Great to see your name and read your post - it’s made my night!
Mat x






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DavidHC (08-14-2018)
Old 08-14-2018, 12:55 PM #18
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Hi Mat,

It's nice to hear from you. I'm really happy to hear you found the post helpful. That was the plan!

Yes, the plight of the poor boy was in the news of late: https://www.theguardian.com/society/...st-says-mother. From what I know is that the law in the UK is that anything under .2% THC (it's .3% in the USA and Canada I think) can be sold, so hemp is okay, which the source of much of the CBD oil around. But the situation seems unclear to me from what I've seen. What I do know is that there are multiple reputable sellers in the UK and ones that ship to the UK, so if you want it, then you can get it. In Canada with an RX you're good to go, but I need pure CBD isolate and that's not available. So I'm getting mine elsewhere. I think Bluebird Botanical from the states has a office in the UK, but I'm not sure. They have third party testing for everything the sell, very transparent.

If you want to take the legal route in the UK, you might want to ask others who would know better, who live and use CBD in the UK. There are many who live their lives using quality CBD there. You can always speak to your doctors about your situation and see where that gets you, but it seems like the situation there is less than ideal. I know 4 neuropathy sufferers who went off all meds after a few months of CBD use. I myself use CBD instead of anything RX. This is not to say that it will work the same way for everyone, so take it for what it is, anecdotal evidence.

I am sorry to hear that your problems continue and your nerve damage is expanding. It's happening to me too. I've given up on conventional medicine and haven't seen a single doctor in at least a year, maybe even two. In a few weeks I'll see a new neurologist but I expect absolutely nothing from him. I wish it were different, but this is how it is.

I hope your path leads you toward some resolution and help, and maybe CBD will help with that. I'm here if you have any questions if you do decide to try it.
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Old 08-14-2018, 01:17 PM #19
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Quote:
Originally Posted by DavidHC View Post
Hi Mat,

It's nice to hear from you. I'm really happy to hear you found the post helpful. That was the plan!

Yes, the plight of the poor boy was in the news of late: Cannabis oil row: Billy Caldwell 'under hospital arrest', says mother | Society | The Guardian. From what I know is that the law in the UK is that anything under .2% THC (it's .3% in the USA and Canada I think) can be sold, so hemp is okay, which the source of much of the CBD oil around. But the situation seems unclear to me from what I've seen. What I do know is that there are multiple reputable sellers in the UK and ones that ship to the UK, so if you want it, then you can get it. In Canada with an RX you're good to go, but I need pure CBD isolate and that's not available. So I'm getting mine elsewhere. I think Bluebird Botanical from the states has a office in the UK, but I'm not sure. They have third party testing for everything the sell, very transparent.

If you want to take the legal route in the UK, you might want to ask others who would know better, who live and use CBD in the UK. There are many who live their lives using quality CBD there. You can always speak to your doctors about your situation and see where that gets you, but it seems like the situation there is less than ideal. I know 4 neuropathy sufferers who went off all meds after a few months of CBD use. I myself use CBD instead of anything RX. This is not to say that it will work the same way for everyone, so take it for what it is, anecdotal evidence.

I am sorry to hear that your problems continue and your nerve damage is expanding. It's happening to me too. I've given up on conventional medicine and haven't seen a single doctor in at least a year, maybe even two. In a few weeks I'll see a new neurologist but I expect absolutely nothing from him. I wish it were different, but this is how it is.

I hope your path leads you toward some resolution and help, and maybe CBD will help with that. I'm here if you have any questions if you do decide to try it.
Thanks David. Someone on a FB forum I use for SFN says she gets hers from CBD Brothers in Suffolk, England and has been very pleased with the pain relief it’s brought.

I wonder if you’d be okay to take a look for me at her recommendation (they have a good website) and let me know if you think it sounds like a good bet in terms of content / ratio of Hemp etc?

At my GP’s request I’m giving Pregabalin/ Lyrica a chance for a month at 150mg per day. It iappears working well for the pain now but is making me feel out of it. I spoke to my neuro PT and her feeling is that this knock out cotton wool fatigue and foggy numbness is probably too a high a price to be sustainable long term for me. I’m uneasy about taking a med which might be hard to get off again after a terrible experience with getting off Cymbalta.

However, bearing in mind I’m under Rheumatology and seeing another neuro for a second opinion end of this month, I have to go carefully with self medicating. My PT works with MS sufferers mostly so is well aware of CBD oil and medical cannabis and is open minded. If I feel these consultants are still selling me down the Swanny without a motorised paddle (I can’t envisage my arms being strong enough to paddle far!) then there will come a time when I decide enough is enough too.

But I do have Sjögren’s and probable small vessel Vasculitis and am also aware that I’ve already sustained a lot of irreparable damage to small nerve fibres from the colour changes in my feet and hands and the fact that, when any pain is addressed through medication, I’m left increasingly with numbness everywhere.

Nevertheless I plan to ask the rheum and neuro what their thoughts are on this - given the horrific side effects that many Pharma products have inspired in me!
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Old 08-22-2018, 12:15 PM #20
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Quote:
Originally Posted by Dixie1234 View Post
Hi there, I just got some 600 mg. CBD oil, and with the info y'all provided in this thread, I feel good about giving it a try. I am extremely arthritic, have a broken neck from about 60 years ago, have carpal tunnel in both hands, pain and severe numbness in legs, feet, arms, etc etc etc... This is quite alarming as these conditions are worsening every day. Obviously something is going on, and I'm not looking forward to the inevitable doctor's visit. Truthfully, I don't even know how to describe what is happening to a doctor, or even what kind of doctor to see.

Thanks for being here,

Dixie1234
Dixie - be careful about the "carpel tunnel" I was told I had the too - had the surgery done (both hands same time as I was so desperate for pain relief) it was ALL sensory neuropathy and after having that nerve cut that is ON FIRE it has made my life more difficult. Just saying maybe you truly have it but please make sure!!! Life is hard enough - I'm trying the CBD too
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