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Old 08-22-2018, 12:17 PM #21
DavidHC DavidHC is offline
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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!



Quote:
Originally Posted by MAT52 View Post
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, 12:42 PM #22
tinaanne tinaanne is offline
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Default 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 -- 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
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Old 08-23-2018, 02:14 AM #23
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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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Old 08-23-2018, 07:14 AM #24
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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.

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Originally Posted by DavidHC View Post
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?
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Old 08-23-2018, 11:22 AM #25
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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!
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Old 08-23-2018, 01:00 PM #26
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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.
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Old 08-23-2018, 01:25 PM #27
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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.


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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.
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Old 08-31-2018, 10:06 AM #28
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Quote:
Originally Posted by DavidHC View Post
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.


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


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Old 08-31-2018, 10:08 AM #29
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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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Old 09-01-2018, 12:42 PM #30
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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!
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