Chronic Fatigue Syndrome and Small Fiber Neuropathy: What helps?

Good evening @sharka, Well, you got me. I would not have guessed Australia. I am not concerned about pesticides and heavy metals. My cannabis choices come from the same company I have been with for about 9 years. They have progressed significantly and are very responsive to patients. They have two websites: the first is http://www.papaandbarkley.com and covers a wide range of medical cannabis options. The second website is http://www.papaandbarkeycbd.com and covers only CBD products. The sites explain the products and resources well.

The reason I trust them is that I have been with them for so long and watched them grow. I also know that in CA, the producers must follow certain regulatory protocols. That, in and of itself is one of the benefits of legalizing cannabis..........regulations.

So....have a look at those sites. Perhaps you will find some helpful information.

May you have happiness and the causes of happiness.
Chris

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Thank you so much Chris!
Even though this website don't ship to Australia, it's helping me to read some very useful information 👍 👌

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I just turned 62. I am so different from the person I had prepared to be at this age. After 7 years of chronic pain and fatigue, I am starting to lose my fight. My rheumatologist insists that I have fibromyalgia, and punch biopsy confirms SFN also. How can this happen? I won’t go through how active I was even just a few years ago. Now the least bit of exercise or activity (gardening, shopping) buys me an evening of relentless pain in my back, knees and hips. My muscle tone is diminishing, and I’ve gained weight. Since it’s an invisible illness, it’s hard for friends to understand.
Today I volunteered at the animal shelter. I was using a stepladder to clean a cat kennel. Up and down, with supplies and food. It was only two steps. It was so incredibly painful, and tonight I’ve been crying out with pain every time I get up from my chair.
Trying to figure out how to keep adjusting and adjusting to my changing future. Sorry to sound so negative, but I’m worn down right now.

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Good evening @sharka, it is wonderful to meet you on Connect. You've been quite busy since your arrival on July 22. As I gather.....you have idiopathic SFN (small fiber neuropathy). How long have you been trying to get a good handle on pain control?

My introduction to medical cannabis was facilitated by a surgical nurse friend who took me under her wing and started me on a small dose in a vape pen. I was blown away at how much relief I was able to receive just from the testing. Besides that I am highly allergic to opiods and many other standard medications.

I quickly realized that with Maggie's help, I might have a chance. That was some time ago way before CA legalized recreational as well as medical marijuana.

To get this going, you might want to tell me the state you live in. I will be happy to check out all of the laws and procedures in your hometown. If possible it is best to start with tinctures and topicals......save the edibles and beverages for a party someday. If available, it is helpful to request a meeting with a pharmaceutical specialist in the dispensary, who helps folks select their first cannabis. Therefore it is important that you make sure that he/she knows what other medications you are taking and with what medical conditions you are dealing.

Essentially, you will soon become your own prescriber. And for that reason, we have the following reminder......." you can always have more.....you can never have less". Just keep that in mind.

The tincture bottles have droppers with measuring marks (e.g. mg). So if you are using a 3:1 CBD/THC then you know that there will be 3 times more CBD than THC in whatever amount you draw into the dropper. With some products, especially topicals, you might have two options......a 3:1 CBD/THC for chronic pain and a 1:3 CBD/THC for acute pain.

To get started, here is a link to a new publication about dosing.
https://www.projectcbd.org/guidance/cbd-dosing

Why don't you give me an update after reading the article? Then it may be time to head on up the hill.

Thanks for your interest and I hope this is a good start. I will now take the top off my nightcap.
May we both have comfort and ease tonight.
Chris

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Hello Chris! Thank you for the info! I'm going to see cannabis prescribing doctor next week. Still thinking whether to go, or cancel the appointment, it's expensive, the appointment and canabis too. I'm in Australia. Fighting sfn for about five years, about three years ago I've started with R- alpha lipoic acid and acetyl L carnitine, and magnesium, D and B complex to get some relief. Can't use standard medication too, got allergic reactions, so scared of anything drs. Prescribing, wouldn't touch lyrica, etc.
Not sure if I can drive, if I take cannabis in the evening before. In my state I can't drive with THC test positive. But medical canabis is legal.
Even bought from USA from maxcbd wellness, but not sure if I'm OK to drive, so stopped taking, before I could experience any relief from pain.
Also, I've heard, that cannabis can take some vitamins and minerals, like magnesium, do you take any supplements to replenish?
Any advice is highly appreciated 🙏! I'm hoping to achieve greater results from cannabis than supplements.
I'm hoping to reduce supplements and take just cannabis for the pain.
And thank you for the article, going on to read it!
Would you possibly know of any reputable companies who post to Australia? Only found maxcbd wellness, quite expensive though.

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Hi, @sharka.

I have had sfn for about 30 years. Started meds in 2011, gabapentin, and it was slightly helpful pain-wise, but made me high and I gained about 25 lbs. Then to nortriptyline, which was ok, but my neurologist recommended medical marijuana. That was about 5 years ago. It took about a year to figure myself out. Some of it was that they didn't say, or I didn't hear, that you need a consistent dose so that you have a consistent blood level. and it takes a month for it to build up. So I played around with it and didn't get much relief. But, then I got it and now it is helping well.

I do not smoke. I know many do, but my disease is pretty advanced and I need to have that consistent dose, and smoking doesn't provide that. I take pills. I am sensitive to thc, so I can't have it in the day. So, for the day I take medical cbd only, 60 mg. Then, at night, I take cbd and thc to help me get to sleep and stay asleep. dose depends on if it worked the night before and, if not, I take more.

I hope this helps you even though this is almost a year after you originally wrote.

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I just turned 62. I am so different from the person I had prepared to be at this age. After 7 years of chronic pain and fatigue, I am starting to lose my fight. My rheumatologist insists that I have fibromyalgia, and punch biopsy confirms SFN also. How can this happen? I won’t go through how active I was even just a few years ago. Now the least bit of exercise or activity (gardening, shopping) buys me an evening of relentless pain in my back, knees and hips. My muscle tone is diminishing, and I’ve gained weight. Since it’s an invisible illness, it’s hard for friends to understand.
Today I volunteered at the animal shelter. I was using a stepladder to clean a cat kennel. Up and down, with supplies and food. It was only two steps. It was so incredibly painful, and tonight I’ve been crying out with pain every time I get up from my chair.
Trying to figure out how to keep adjusting and adjusting to my changing future. Sorry to sound so negative, but I’m worn down right now.

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