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.

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.

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!

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!

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 -- 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 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!