RSD/CRPS

Posted by Anonymous @anon37227499, Nov 6, 2011

Does anyone have RSD/CRPS? Do you know if there's a current research study for this at the Mayo Clinic?

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Profile picture for mille125 @mille125

There is a new very promising and minimally invasive treatment called scrambler therapy.

PM me if you want to discuss.

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@mille125 Didn't work for me

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I have CRPS...don't know of any Mayo studies

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Profile picture for erinaphilly @erinaphilly

I feel so bad that so many people are feeling this pain and not being diagnosed I thank God I was diagnosed immediately . But even with early diagnosis nothing is helping I did Gabapentin a did the nerve block and just finished the travel for the electrodes in the spine . I just don’t understand why the burning is now traveling it was the left arm then was traveling up my neck now it is going down my left side and all through my left leg I feel like I am an FIRE . As the burning begins my skin literally starts looking like I am being burned on the inside it starts changing color and looks like blisters are forming . I have insomnia now to top it off and I literally want to jump out of my skin .

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@erinaphilly Sad to say this is why CRPS is called the suicide disease. If you don't catch it early (like in the first 3 months) managing the pain is almost impossible. I have tried every treatment that has been know to help without any relief. Good luck to you! Keep trying!

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Profile picture for caitlin9489 @caitlin9489

@dcanada54
No, nothing the pain management clinics did helped at all.
I started using the high dose CBD to help with schizophrenia symptoms.
The RSD pain literally melted away. Six years of not being able to pick up a coffee cup or turn off a light switch, the unbearable ache and burn, it got to the point that I couldn't dress myself or feed myself.
Within two weeks of the CBD oil the pain was noticeably decreasing. After three months I was able to shake someone's hand for the first time in years. That was amazing. I no longer have any RSD/crps pain at all, now. I now use my hands for hammering and chainsawing and riding motorcycles and drinking coffee, yay!! With no more pain.
I've taken a daily dose of 2500 mg now since 2019, with no side effects, except occasional dry mouth.
My bloodwork and health are monitored every three months for other conditions. The CBD has had no observable negative effects. I'm sane now too, without pharmaceuticals for schizophrenia, which is another advantage.
Good stuff .

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@caitlin9489 Where do you find 2500 mg of CBD oil? I have low dose in a cannabis gummie purchased at a medical marijuana dispensary. Did you have any side effects from that when you started? How long did it take to start feeling positive results? I’m so scared at the moment.

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Profile picture for jshuchart @jshuchart

@mille125 Didn't work for me

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@jshuchart I have an appointment for a consult from the Pascal Institute. They use the Scrambler therapy. Dr. Pascal is a chiropractor but I’ve heard positive reviews from his therapies. Good luck.

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Profile picture for caitlin9489 @caitlin9489

@dcanada54
The dosage I took that brought the pain under control, and then erased it, was 1500 mg a day of full spectrum CBD oil.
Full spectrum oil is an EXTRACTION of CBD cannabinoids.
Most of the CBD oil available for purchase is a tiny amount of CBD flower of isolate INFUSED into a carrier oil. This is usually a tiny dose of CBD, commonly 25 mg to 50 mg.
Just keep that in mind that if you are taking CBD infused in a carrier oil the actual dosage of CBD is too small to be effective against the neuropathic pain of RSD/CRPS.
The EXTRACTED, pure cannabinoids are a necessity to get a high enough dose.
I started small and worked my way up to 1500 mg. At 650 mg/ day there was already a substantial decrease in pain.
The research using CBD for neuropathic pain uses doses that are really too low to be effective.
I make my own, at home, cheap and easy
Hope that info helps.
Changed my life, needless to say.

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@caitlin9489 Do you grow certain strains of marijuana to make the CBD? We tried to raise several strains in our setup but it takes so long to cultivate, then process. It’s legal to grow four plants in our state, VA. Just have never spoken to someone who makes their own CBD. Very interesting.

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Profile picture for caitlin9489 @caitlin9489

@dcanada54
The dosage I took that brought the pain under control, and then erased it, was 1500 mg a day of full spectrum CBD oil.
Full spectrum oil is an EXTRACTION of CBD cannabinoids.
Most of the CBD oil available for purchase is a tiny amount of CBD flower of isolate INFUSED into a carrier oil. This is usually a tiny dose of CBD, commonly 25 mg to 50 mg.
Just keep that in mind that if you are taking CBD infused in a carrier oil the actual dosage of CBD is too small to be effective against the neuropathic pain of RSD/CRPS.
The EXTRACTED, pure cannabinoids are a necessity to get a high enough dose.
I started small and worked my way up to 1500 mg. At 650 mg/ day there was already a substantial decrease in pain.
The research using CBD for neuropathic pain uses doses that are really too low to be effective.
I make my own, at home, cheap and easy
Hope that info helps.
Changed my life, needless to say.

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@caitlin9489 found organic full spectrum 750 mg online through Cornbread. There is another top recommended but the price was $149.00.

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Profile picture for dcanada54 @dcanada54

@caitlin9489 found organic full spectrum 750 mg online through Cornbread. There is another top recommended but the price was $149.00.

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@dcanada54
No, that is an infusion, not an extraction.
It is majority carrier oil (jojoba, olive oil, coconut oil, whatever,) with a teensy weensy tiny tiny tiny amount of CBD in it. Like you would make a cup of tea, and you would use a tea bag of CBD flower.
A CBD extraction is as if you took the tea bag and used a solvent to extract the CBD cannabinoids from the tea bag. You would maybe have a hundredth of a drop of CBD produced from that one tea bag.
Now take 100 tea bags and you have a single drop of CBD.
People get very confused because both types use the word 'oil'.
In the case of a CBD extract, there is NO actual oil in it. It is called an 'oil' because of its extremely thick, dark texture and low viscosity.
What I take is a CBD EXTRACTION. 1500 to 2500 mg of PURE (or nearly) CBD cannabinoids. It's nearly a solid, split into four capsules a day.
The kind you showed, made with a carrier oil, might provide 50 mg of CBD cannabinoids in the entire bottle.
That doesn't stop neuropathic pain. I wouldn't even be able to tell I took it, it's so small.
Hope that info helps.

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Profile picture for dcanada54 @dcanada54

@caitlin9489 Do you grow certain strains of marijuana to make the CBD? We tried to raise several strains in our setup but it takes so long to cultivate, then process. It’s legal to grow four plants in our state, VA. Just have never spoken to someone who makes their own CBD. Very interesting.

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@dcanada54
Yes I grow my own. I could not afford to buy the dosage I take.
I have had good results with ACDC, Cherry Blossom, and a few others. The all time best is Special Sauce. I grow from seed. Four large plants would be a very good start.
I also have purchased CBD flower in bulk by the pound, and made it that way.
A raw pound of CBD in bulk costs between $150-$300, and makes approximately 50 grams of full spectrum CBD, or 50,000 mg.
I use 3 lbs at a time and make 150 grams from it, which lasts me 2 months, 2500 mg a day.
At a dose of 650 mg, a starter dose for treating neuropathic pain, a lb of raw CBD would make 50,000 mgs and last almost 80 days.
Avoid CBD 'isolate'. It contains only CBD and leaves out the other 120 or so cannabinoids that are in 'full spectrum', and it is not nearly as effective.
Hope that info helps.

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