The Amazing Benefits of CBD: The Non-Psychotropic Cannabinoid and Neuropathy
 

I haven't posted much of anything on here for a long time. But I’ve been wanting to write this very long post about cannabidiol or CBD for a while but I’ve held off for two reasons. One is a simply that I’ve just been very busy with work and getting things done that I haven’t been able to get to for months, and sometimes for years. This is actually because of what CBD has done for me. The second reason is that I wanted to have enough time and data before I wrote anything.

First some background/context. I have full body idiopathic small fiber neuropathy, but that’s just a formal diagnosis. In addition to this, with all the sensory and autonomic issues, I clearly also have large fiber involvement, since I have tremors or shaking and muscle weakness. Multiple attempts to pick up on the large fiber involvement has failed, but all of them were about 3-4 years ago, and my neuropathy has definitely progressed since then. My disease has progressed overall but at a moderate pace.

To give you some idea about what life is like for me on a day to day basis, I’ll list some things. Sometimes I drop things, sometimes I feel some burning, sometimes I have heart palpitations and difficulty catching my breath, and then there is the skin damage, muscle weakness, tingling, numbness, and much more. The worst symptom to me is my constant tremors or shaking or vibration, however you want to phrase it. It happens throughout my whole body and it gets worse when my body is stressed, so when I’m tired, angry, hungry, and so on. There are other symptoms, but I don’t want to go on and on.

In addition to the nerve related issues, I have been depressed and anxious for years, even before my diagnoses, but likely concurrent with when the disease started without me knowing it had started. My life has gone nowhere for years even though I’m in my 30s and in the prime of my life. I have felt no desire or motivation for anything, but instead I’ve been living day by day. This is partly because I have no energy, but also because I was severely depressed. As many of you know, this is a common symptom of chronic conditions, especially ones that are left undiagnosed and degenerative.

I write all this by way of background/context, so that it becomes clear what CBD has done for me. Over the years I’ve taken every supplement under the sun. Now let me get to the point. About 3 months ago, I began taking CBD derived from hemp. I had smoked marijuana for years, but only recreationally and sometimes as a sedative for sleep. But as my anxiety and depression worsened with my disease, THC caused me more problems than it did good. I also knew my fair share about CBD and other cannabinoids. But I had never thought to take CBD in its pure form or that it was available in this form, and shamefully I didn’t know that many (though by no means all) of the medicinal benefits of cannabis were from CBD and crucially and embarrassingly that it was not psychotropic, that it didn’t get you high but quite the opposite.

The impact on my health was immediate. The depression and anxiety lifted, my energy and motivation noticeably increased, and I felt positive about life for the first time in years. My pain significantly reduced, there were no blood pressure issues or heart palpitations, and a number of my other symptoms disappeared entirely. This includes my worst symptom, the shaking/tremors, which shouldn’t be surprising given how effectively CBD works for epileptics. My sleep, focus and memory all dramatically improved. The stiffness and horrible aching pain in my joints and the numbness in my feet and hands lessened, which is likely partly because CBD is a vasodilator. Actually, when I’m on it, my joint pain disappears entirely.

I had read about all these things, having read all the animal and human studies I could find, which are thin to be sure given the idiotic, politically driven and unscientific prohibition of Cannabis throughout the world but especially in the states, where so much of the research funding originates. But I didn’t believe it could be such a panacea! Who could? But it turned out it’s all true.

A few months in and it’s clear that CBD is a game changer for me. Sometimes I notice how effective it is when I’m not on it, when I miss a dose because I’m out or can’t get to it. I start shaking, my temperature starts changing, my hands and feet hurt and feel stiff and numb. The tingling and sharp needle like pain returns. I start to shake and to feel joint pain again. I could go on and on.

I’ve since also met about a dozen neuropathy sufferers in person and online who have seen similar results, some even better than mine. Two people have seen an almost complete reversal of their neuropathy over 2-3 years of daily use. Others have at least seen their symptoms lessen and their quality of life improve. It’s too early to tell for me, but at this early stage I’m at least in the latter camp. I wish I had started earlier, I wish I had known about CBD in this pure form before. But I’m grateful I am using it now. I’m thinking long term, since nothing changes overnight. The best results I’ve seen are from people who have used it for many months and years and who have been patient. One person I spoke to felt nothing for an entire 2 months until she started to feel the benefits. Most people feel it immediately once they have figured out the right dose for them.

You can get hemp derived CBD in many countries in the world, certainly in the states, Canada, and most European countries. The legality of it is unclear in many places, but it’s sold and shipped to every corner of the USA, Canada, and again most of Europe. In some of these places it’s also entirely legal. It’s not like marijuana in that hemp has a legal amount of THC so to speak. That is, what qualifies as hemp are cannabis plants that have less than .3% THC, and often less than .2 or even .1 percent THC. Some of the best companies for quality CBD are in the states, so Americans have it good. Canada, where I am, is more complicated, and I’ve had to work hard to find a quality affordable product that is effective. I don’t know Europe as well, but I’m happy to help with suggestions where I think I can help. Any Canadians out there who need help, should send me a message. Things are more complicated in Canada but we have a few options including legal ones.

Here are a few important facts for those considering CBD:

1. There are two main kinds of CBD, full spectrum and isolate. Full spectrum is about 90 or so percent CBD and 10 percent or so other phytochemicals, so other cannabinoids and terpenes, including trace amounts of THC (not nearly enough to have any psychotropic effect even if you consume massive amounts). A few preliminary studies seem to show that full spectrum is more effective in various ways, because of the so called entourage effect arising from the other phytochemicals. For example, CBN, CBC, CBG and even THC have all been shown in preliminary research to have immense medicinal benefits of their own, not to mention some of the terpenes and their medicinal properties. However, I’m one of the few who tolerates CBD isolate much better. In fact, for whatever reason, two thirds of the neuropathy sufferers I’ve spoken to have all had the same experience and so use isolate. My suggestion would be to try both. Also, it’s important to know that every full spectrum product from a specific plant/farm is like a unique strain or combination of phytochemicals, so if you can’t tolerate one full spectrum oil, it doesn’t mean you can’t tolerate them all. I’ve actually found one full spectrum product that I like at times. But I still use isolate 90% of the time.

2. Dosing is complicated and specific to each person. CBD can have a biphasic effect. Low doses work as stimulants and high doses can lead to drowsiness and a good night’s sleep. I take lower doses in the morning and afternoon when I need to be energized and focused on my work, and higher doses in the evening when I need to relax and wind down for bedtime. What constitutes a low dose and what a high dose will be specific to each person. There are a number of factors, such as weight and what you’re treating. This is very important. Depending on your condition, you may require higher doses, so pain requires higher doses, whereas relief from anxiety requires much lower. These general principles are for the most part true across the board, but you will still have to experiment and figure out your own high and low doses on your own.

3. CBD is unregulated in most places including in Canada and the states. I can recommend CBD companies (all online) that are excellent, and there are a number of them, so feel free to ask me. But as a general rule, what you want and what makes the companies I use good, is transparency. You want third-party testing for as many markers are possible. Testing for potency, residual solvents and heavy metals are ideal. Some places have these and also testing for pesticides and microbes. This is rare because it’s expensive to do. But at a minimum you want testing for potency (and for residual solvents for CBD isolate at least). There are lots of places selling dangerous and often synthetic things so be careful. You don’t want to be consuming chemicals and you don’t have to if you attend to what matters and make sure the company is properly vetted. There are also lots of places that have terrible markups. CBD is not that expensive, so you don’t need to pay high prices for a quality product.

There is so much more to say, so below are some articles you can read. These are the ones that make the rounds on CBD forums, and they will have links to a few studies. One of them is a survey of side effects. So I also include something on the side effects, which are minimal. Even at very high doses CBD is very well tolerated by humans and animals. The few side effects are almost always reported at very high doses, often thousands of mg per day, and in a small minority.

What Are The Medical Benefits of CBD? - Leaf Science
Why Doesn't CBD Do Anything For Me? | POPSUGAR Fitness
Does CBD Make You Sleepy or More Alert? - Leaf Science
An Update on Safety and Side Effects of Cannabidiol: A Review of Clinical Data and Relevant Animal Studies
What Are The Side Effects of CBD? - Leaf Science

I don’t want to give anyone false hope. Lord knows I experienced my fair share of false hope over the last few years. I had given up and had zero expectation when I tried CBD. And so the story goes. I very much hope that CBD can help some of you out there as it has helped me so much. Just know that you have to give it a real chance and experiment with different forms, brands and doses. I use a tincture and a topical (for neuropathic itch and muscle/joint pain), but you can also vape or ingest it. You have options. The tincture works the best for most, because it’s safe and gets into your blood stream immediately. In the end, all you need is time and patience to experiment and see what works for you. The first product or two (or even three) may not be effective for you, but then you may find one that changes everything. I had to try a few before I found what worked for me.

Good luck!

I Love the CBD Salve!
 

Thank you David for the wealth of information you have provided on the use of CBD for SFN and PN. There is nothing like a testimonial by one of our own to motivate me to try something new.

I have used the salve for muscle aches and pains for awhile. One night I decided to try it on my lips for the chronic burning pain and it completely relieved the burning. I now use it on the daily. It's also better for dry lips then the commercial alternatives.

Since CBD is legal I will begin experimenting immediately. What have I got to lose?

Thanks again.
carol

Thank you for your kind words, Carol. :)

Honestly, I'm just hoping it helps people out there like it has me. It's not a cure all, well not for now, but it have dramatically improved my life as you know. I've done what I tend to do, which is extensive research and personal experimentation, and these are my results.

And yes, what do we have to lose? Unlike some other things I've tried, it is also very rare to have side effects and even rarer to have major ones, so all the better.

I'm so glad the salve had worked for you. I use it for my burning and itching on my lips, where it gets rid of it immediately, and on other parts, where it makes a major difference. I hope you continue to see results and more of them going forward.

For anyone wondering what salve we are using for this purpose, it's the regular one from Fully Activated. I imagine other products could do the same, but this one is cheap, from a great company, and with only organic natural ingredients. They also have an actual lip balm, which is almost the identical formulation as the salve. But I've been meaning to try other topicals myself and will soon.

WOW!

Thanks David! I had wondered how you were doing and apparently you have been doing quite well, thanks to CBD.

Unfortunately, CBD is not legal in my state and my pain mgmt doctors would stop treating me if I tried it at this point. But I hope things will change soon, as I have read many positive points on using CBD and yours really detailed all it has to offer.

So glad you are doing well and it made such a difference in your life. Please keep us posted.

Well, hello! It's nice to hear from you. It's been too long! :)

I often wonder how you're doing. I hope you're doing well, or at least as well as can be expected given all we have to deal with.

I'm relatively. The CBD has really helped. My neuropathy has progressed since we last spoke, but the CBD has done a lot for me. It came out of no where. Once important thing it has done is indicate that inflammation is a serious component of my disease. CBD is an anti-inflammatory and it's in this respect that it's done the most systematic good for me.

A question, are you sure CBD from hemp is illegal? You're in Virginia, right? Technically, the DEA claims it's a schedule 1 drug, those morons. But recently the first cannabis derived medicine was approved by the FDA, so the DEA will almost certainly be forced to remove CBD from the schedule 1 listing. The drug is called epidiolox and all it is is CBD.

I also found This in case it's relevant: Virginia's Limited CBD and THC-A Oil Law - MPP.

Regardless, American companies ship to all states, so it wouldn't be an issue to get it. But your doctor might be a problem. I find his/her position so sad and typical.

I believe the new farm bill in the USA has passed the senate and will become law sooner than later. If so, and if it doesn't change, CBD from hemp will be legal federally, or so my American friends are saying.

If you think I can help, let me know. And I do know people all over the states, so I can ask someone in your state, if you like.

Either way, it was nice to hear from you!


EDIT: Here is some information about what's happening with the 2018 Farm Bill: Farmers hope 218 Farm Bill will lift 8-year ban on hemp - UPI.com

Excellent information! I've used high CBD marijuana for several years. My pain is only episodic and relatively short-lived but is sudden, severe and wide-spread. The great thing about CBD for a situation like this, is the immediate relief when used via tincture or vaping. Thanks for the very thorough post.

You're welcome. I'm just trying to spread the good word about CBD. :)

It sounds like you're doing it all right. I also use high CBD strains sometimes, like 1:1, 3:1, 5:1 or even higher like 15:1 and 20:1. I use it for sleep when I need a little THC. I smoke it because I don't have a vaporizer, but I really shouldn't smoke. I really need to buy one. But vaping, smoking and tincture are definitely the most immediate methods of administration, and apparently with the highest bioavailability. Well, you could always use an IV, but that's a little extreme. For me, the tincture is as close to immediate relief as possible. At most it takes 10-15 minutes, but often within just a few I start feeling it. It's really amazing.

A few people have sent me PMs asking about the kind of neuropathy sufferers I met for whom CBD has worked so well. That is, what was the etiology of their neuropathy. So I thought I'd post something here. They were really all over the map, three had complications arising from lime disease, where CBD helped with many of their symptoms, not just the neurological ones (if you can even separate things out); another 2-3 had diabetic neuropathy, and CBD can help lower blood sugar level in addition to other benefits; one was due to heavy metal toxicity; and finally the others were all idiopathic. I hope this helps anyone who is wondering about this particular issue.

A point of view to the side
 

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

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.

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. :)

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? ;)

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 :):)

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

You have given me hope
 

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

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!

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






Sent from my iPad using Tapatalk

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. :)

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! :cool:

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
Tina

Sorry for the late reply, but I've been doing some research. From what I could gather, prices in the UK are horrendous. They're terribly high and I can't understand why. It also took me a while to understand the somewhat confusing methodology when it comes to labeling. In North America you know precisely how many mg each product contains. In the UK they talk about whole plants and percentages. They do this elsewhere too, so it's not limited to the UK.

Now, despite their insane prices, at least some people seem to like CBD Brothers. And they have what seems to be third party testing on their site, but you'll want to look into that and make sure it's legit. This is if you wish to order from them. Another UK based place is CannaWell, which carries products from Bluebird Botanicals in the states. Bluebird is high quality and the most transparent company out there. The prices are high but not as high as CBD Brothers.

I think the best bet would be to order from the states. I know some American companies ship to the UK with discreet labeling for customs. They have third party testing, high quality and far lower prices. If you're interested in this, send me a PM.

CBD could be immensely helpful to you, but of course you won't know unless you try it. I do hope you do at some point. As for the rest, hang in there. We all know the hell that this disease can cause. I also have changes in my skin all over my body, from head to toe. It saddens me to see it on my head and face. But I trek on! :)

Be well!

I'm trying CBD too
 

Hi friends
I thought I posted something earlier but can't see it. I am very excited about the CBC as a tool in my tool box. I have had sensory neuropathy (erratic blood sugar)for 18 years and it runs my life :mad:-- but with the help of my neurologist at the Mayo Clinic - I have had enough pain relief to have a quality of life - I take Lyrica and a narcotic. I am on the Keto diet for the last 9 months and it has helped me so very much. I eat less than 30mgs of carbs a day and it has helped my neuropathy (biggest problem was fruit)

HOWEVER - I am going through some major marriage issues as my husband of over 40 years (we met at 17) is bipolar has decided to go off all his depression meds -- and then he moved out. Enough of that -- but consequently my stress is really high. Soooo my pain has significantly increased. A new pain feeling like acid was poured on my hands - and significant swelling as well --- (as well as an increase of pain in the arch of my feet - another new issue) I was so desperate and then just about an hour later I saw a sign outside of a health food store talking about CBD and pain relief - I got a lotion with 750mg CBD and immediately put it on my hands and the sting was GONE. It is hard to describe as I could feel the pressure and burning but little pain. It lasts about an hour for me. I could feel it coming back and am using it about 6 times a day. I also bought the 500mg drops and taking that about 6 times a day. It has been 5 days and my "new" acid pain is at minimum cut in half. i have read a bunch over this period and feel that this is something I'm going to try for at least 30 days and then decide.

Im a little afraid of taking the THC in addition as I take narcotics and I'm afraid over what might happen if I add it -- I'm doing more research but I'm keeping my mind open. I am so thankful that I found CBD - when I found it - and hopefully we are on to something that so many of us need relief - w/o side effects.

The biggest issue is it is costly. The cream I purchased was almost $50 and most of the products are not cheap - but IF you can afford it - give it a try -- I am sleeping better and my hands are able to type right now - couldn't do that 5 days ago. Someone else bought the drops 500 mg for me so I'm not sure about the cost I believe somewhere between $30 and $50 also.

I have been here on the web site on and off for 15 years- I always am glad that I checked in - we all can relate and when it gets unmanageable I find strength here with all of you. This is so exhausting dealing with pain all the time...

Keep the conversation going on CBD and lets have more relief!!

Tina:)
Tina

Hi again David. Yes it’s incredibly expensive to buy it here in the most pure form. But we have just been away on short holiday in Dublin.

My husband got fed up of me being in so much pain and hobbling, losing my balance, severe fatigue etc so dragged me into a Hemp shop on the high street (the hemp co, Dublin) and we bought a vape pen and 99% pure crystal CBD powder for me to try once I’m off Pregabalin/ Lyrica soon.

It wasn’t at all cheap to buy but if it works we will source the crystal competitively online.

Needless to say my oldest son is exasperated with me as he says it’s the THC that counts and mine has none. But I always threw up after smoking joints when younger and I’m so hypersensitive to medications that I just want the isolate first.

So I’m excited, having learnt more from young man who went through the various options with us, even though we told him honestly that we were only researching possible options - not planning to buy anything.


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Sorry for the delay. I bought mine from Bluebird Botanicals.

The good news is that my symptoms haven't been bad since I got it, so I haven't tried it yet. I'd like to wait until I'm in a bad flare to give it a shot.

Hi Tina,

I'm sorry to hear about your recent personal issues and how they've exacerbated your condition. It's a hell I know too well. I hope things improve with time.

But I'm happy to hear CBD is helping you. Topicals can be great. I use it for neuropathic itch and some burning, and it immediately improves things.

About price, CBD can be expensive, but it needn't be. You can buy CBD isolate powder for $20 a gram, or even as low as $15 if you buy in bulk, and you can make your own tinctures and topicals. This is what I do. I haven't yet gotten into making lotions, salves and such things, but I make my own isolate tincture. I buy from Fully Activated, which has some of the lowest prices I've seen, not to mention their isolate is clean of residual solvents and other contaminants. I hear Bluebird is good too, but more pricey. The Hemp Barn is another place. Fully Activated at least ships to many countries outside the states.

I hope this helps, and good luck! :)

Hello again,

Yes, it is, but I know of at least one company that ships to the UK and it costs between $15-20 for a gram of CBD isolate powder/crystalline, which is what you purchased. That's very cheap and affordable. I use 3-4 grams a month at most, so that's very affordable even on my limited income. I'll say it again, UK prices are absolutely ridiculous.

I hope what you bought works for you. Remember that you will want to see third party testing since CBD isolate is processing with chemicals. A clean product will have washed it all out and will have testing showing as much. But I'm happy to hear that you found someone that was helpful. It can be confusing at first, but it's really simple once you get into it. I was the same way and now it all makes sense and is easy to navigate.

Your son has a point, but he is exaggerating it. Studies show that THC and other cannabinoids can be beneficial on their own and in conjunction with one another, resulting in what is called the entourage effect. So a few preliminary studies show that a full spectrum CBD oil is best, this will be 85-90% CBD and then it will have trace amounts of other cannabinoids and terpenes. However, CBD isolate is immensely effective and has been shown to have far more extensive health benefits with minimal, if any, side effects than any other cannabinoid including THC. But THC has health benefits, and again especially in conjunction with other cannabinoids. In particular, THC has been shown to have excellent analgesic properties. There are also studies on dementia that are promising. But THC is also psychoactive and so can have additional side effects. I would say try what works for you, and if that's pure CBD isolate, then you'll be just fine, since CBD is by far the most medicinal of all the phytochemicals in cannabis.

I do want to point out that CBD can also interact with medications. Studies are limited, but it seems like it can interfere with medications processing through the liver. It apparently acts like grapefruit. You can find all this information in the links I provided in my original post.

It seems you've chosen a good company. As far as I know they're the most transparent company out there. I've never tried their products though. I hope it helps you.

Hi again David - thanks so much for taking trouble to research and sorry for late reply. I fell in the bathroom and fractured my rib a week ago on the edge of the toilet bowl. I have a haematology the size of two golf balls and a dark red (changing daily bruise the size of a large sunflower on the left side. They X-rayed to check no long or spleen damage and could see the fracture but no displacement or splintering thankfully!

The pain has been unreal and it’s very hard to get comfortable in bed. I’m not good with pain meds and nearly started using my CBD with vape but bottled out as by this time I’d agreed to take high dose Valium and a pain killer called Nefopam. Both zone me out and maybe I should have tried CBD first but I felt that I was struggling to breathe fully already due to pain so the thought of inhaling anything was more than I could contemplate.

My middle son (23) is home to look after me and the dogs for 24 hours while husband is at work. So he’s researching this as he smoked pot sometimes and it makes him anxious but he also suffers tremors during the night. He thinks it’s due to anxiety and I think it’s partly because his body has never been able to cope with too much stimulants eg sugar and alcohol. He has always has reflux for example so I think blood sugar levels/ hypoglycaemia comes into it too.

Anyway he first sent me a link for medical cannabis and it’s very positive impact on Parkinson’s a year or so ago so he’s helping me work it all out for when I get off the Valium and Nefopam plus Lidocaine pain patches.

I’m going to post about my new young neurologist and her views on my tremors, autonomic dysfunction and SFN in case you’re interested.
Mat [emoji4]


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PS can’t find the modify/ edit button so just to correct that’s hematoma not haematology!


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Hi Mat,

I'm so sorry to hear about your fall. :( I hope you make a quick recovery everything considered. But it seems like it could have been even worse and you escaped without anything terrible happening. Some of those possible outcomes sounds terrible.

THC is not good for anxiety, whereas CBD is. The best relief is often gained by using CBD isolate or a full spectrum product with as little THC as possible. CBD has also helped with my acid reflux such that I don't have it anymore. At least one source I read stated that too much THC can suppress stomach acid, which is not a good thing. Both THC and especially CBD help with tremors. They make mine disappear.

I do hope you can try CBD over harsh Rx, and hope it works for you. I'll check out your other post too. Be well!

The CBD oil has an interesting side effect on me...nightmares. I never have them, and one both nights I tried it.

After some Googling, it appears others have had this issue too. I guess I'll try it during the daytime.

Interesting and unfortunate. I'm sorry to hear that. CBD had a number of contradictory effects and side effects, causing nightmares in some and ridding others of them as well as of night terrors. Yes, maybe a morning dose will avoid this side effect.

I've tried it three more times at night since that's when I really need it, and no nightmares. I also think it helped my symptoms. Win-win. :D

That's wonderful to hear! I'm always happy to hear that CBD is helping someone, especially a fellow neuropathy sufferer. :)

Hello David,

I am something of a neophyte when it comes to cannabis, but I was passing a cannabis outlet in San Francisco today and got myself a packet of Plus Products CBD gummies (expensive it seems at $20 for 20 gummies).

They are as follows: 5 mg of CBD per gummy.

My question: does this seem like it might be a suitable product to trial? And how many mg per day might be considered "default" for someone with mild idiopathic PN?

PS I also purchased some THC gummies as an occasional recreational substitute for alcohol--is it a bad idea to mix the THC with the CBD gummies?

Much obliged to!!

Hi there,

Yes, that could work, and CBD and THC are meant to be taken together, so you would be just fine. In fact, if you take the THC and then don't like the effect, you can minimize it by taking more CBD as the latter works against THC and reduces the psychotropic effect of the cannabinoid. Too much CBD and you just won't feel the THC at all. A 1:1 ratio will still be pretty psychoactive.

And yes, that is pricey, but standard unfortunately. There are cheap ways to go if you need higher doses of CBD for medicine, in particular by purchasing CBD isolate and making your own edibles, tincture and balm.

I'm not sure how suitable it will be for a quality trial. Ingestion unfortunately significantly reduces the bioavailability and delays the onset. So it's pretty wasteful and difficult to measure the dosage needed. The use of tincture or smoking/vaping is easier to control and the effect is immediately noticeable. It also significantly increases the bioavailability so there is much less waste. However, there is some limited evidence that the effect of ingestion lasts longer and is more systematic, whatever that means. I would try various methods and see what works best for you. Only you'll know what's best for you and only after you've tried various methods of consumption. Ingestion works well for many people.

Dosage is also something you'll have to figure out on your own. I guess if I were you, I'd try one gummy a day for a couple of days and see how that goes. Then increase slowly. And if you want to see what each cannabinoid does for you, don't take both at once, at least initially.

Hi David,

So far so good, with the CBD (three days). My situation is compounded by the fact that, aside from PN, I have a number of other chronic auto-immune conditions, the worst being colitis. I am having a bad colitis flare (in fact, it never really stops, and I always test for inflammation in my body) right now.

But perhaps the CBD might help with the colitis . . . I certainly don't think it can make it any worse.

Anyway, to my point. In your original post you mused how CBD might function as a vasodilator. Interestingly, besides CBD I am presently doing my own self-trial of daily sildenafil (yes, Viagra!). I have persuaded my doctor to give me a very low daily dose (10-20mg) as there has been anecdotal and lab evidence that it can significantly mitigate diabetic neuropathy. Of course, the fly in the ointment is that diabetic and idiopathic represent different mechanisms--the vasolidator component might be what works for diabetics who lack the proper blood supply to nerves (poorly written, but you get my drift).

Two weeks in, I can say that my neuropathy symptoms (mainly constant fasciculations and fluid paresthesias) are improved from the weeks before--though this condition varies like hell anyway.

Fingers crossed that either of the self-meds--perhaps both--produce results.

Cheers

PS a question--you probably say this, but do you think that CBD merely mitigates symptoms or does it having any impact at all on the actual condition?

Hi there,

Glad to hear it. I know a number of people who use CBD (and a few THC) for Colitis and it really does help them. I'm sure you'll be able tell soon enough. But on a basic level CBD is known to reduce inflammation, so that alone will be immensely beneficial to you.

That's fascinating about sildenafil. I think I had heard this but I'm not sure. But it seems like that and the CBD are working well on that front. My fasciculations have improved since taking CBD too. When they get bad, I take some CBD and it's gone within minutes. I hope it keeps working for you.

This is a complicated question to answer, primarily because quality human trials have yet to be conducted. The limited scientific evidence and a more sizable amount of anecdotal evidence seems to show that in higher doses it can lead to actual improvement in certain conditions. I would look at the article I posted initially from Leaf Science and read some personal experiences from people. Most people take very low doses and so only experience symptom relief. But given its therapeutic value, including lowering inflammation and being neuro-regenerative and not just neuroprotective, CBD (and actually THC and other cannabinoids) seem to have a genuine ability to effect real healing. There are some studies underway, and I hope the changing legal landscape more quality studies will be conducted.

There is some evidence that CBD can help with colitis.

A Randomized, Double-blind, Placebo-controlled, Parallel-group, Pilot Study of Cannabidiol-rich Botanical Extract in the Symptomatic Treatment of U... - PubMed - NCBI

Hi David
I'm glad that you found a treatment that works for you
and thanks for the info about the CBD!