advertisement
Reply
 
Thread Tools Display Modes
Old 08-27-2018, 02:57 PM #1
tinaanne tinaanne is offline
Junior Member
 
Join Date: Jan 2012
Posts: 39
10 yr Member
tinaanne tinaanne is offline
Junior Member
 
Join Date: Jan 2012
Posts: 39
10 yr Member
Default Small fiber sensory for over 18 year and in a BIG flare

Hi Friends -

Its been a rough month or so - as I mentioned I was diagnosed about 18 years ago and pretty stabilized on Lyrica and a narcotic with my neurologist at Mayo. Life is so limited, but it has been going along. I started in the beginning on Gabipentin and was at the max dose of 2400mg a day with many different pain relievers. But when Lyrica came along taken with a narcotic - it made a significant increase in my lifestyle so that I was able to get a part time job in a women's clothes store. Anyway - fast forward another 6 years or so - I had to let my job go as I got worse.

However, I live in major stress as my husband of over 40 years is bi-polar and went off his meds (again) and decided to move out. I mentioned this in another post so I apologize if I am repeating myself. This has cause a BIG flare up for me.

I am trying the CBD drops as well as the lotion - and it does seem to help with topical pain (lotion) -- with the drops I'm on 1000mg full spectrum and I'm in my second week now -- so we will see. I am only taking 50mg of Lyrica normally so I am taking two of them now. I am also on the Keto diet as my diagnosis is erratic blood sugar - and that has helped too. But nothing kicks stress!!!

Any ideas?? There is nothing worse that feeling like you have no control and are in a decline. I am getting therapy and distracting myself as much as possible and am hopeful for the CBD. Any more ideas? This pain is so exhausting -- it feels like heat is pouring out of the middle of my hands and the arches of my feet. It is a newer pain as normally I just had burning on my skin (which was hard enough) I hope and pray that time, increase in Lyrica and CBD will help. Any ideas?

Thanks for always being here -- this is so hard to manage alone and I've run out of ideas.
Tina
tinaanne is offline   Reply With QuoteReply With Quote

advertisement
Old 08-27-2018, 06:45 PM #2
janieg's Avatar
janieg janieg is offline
Member
 
Join Date: Jan 2014
Location: Maryland
Posts: 792
10 yr Member
janieg janieg is offline
Member
janieg's Avatar
 
Join Date: Jan 2014
Location: Maryland
Posts: 792
10 yr Member
Default

Hi Tina,

Sorry to hear about your flare. Sounds miserable.

I'll just throw out every tool in my arsenal for your consideration. We're all different and what works for one person won't work for another, but hopefully you'll get some ideas worth trying:

- Lidocaine patches (by prescription)
- Quell TENS unit
- Magnesium cream Amazon.com: Kirkman Magnesium Sulfate Cream 4oz: Health & Personal Care


I'm trying to learn meditation techniques for when a stress-induced flare hits, but I'm not terribly good at it. I had to laugh at a few of of the meditation "help" videos on YouTube. "Feel your body. Notice every sensation. Start at your toes." Noooooooooooooooo.

---------------------
janieg is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
tinaanne (08-28-2018)
Old 08-27-2018, 10:19 PM #3
DishRag DishRag is offline
Junior Member
 
Join Date: May 2018
Location: Tennessee
Posts: 57
5 yr Member
DishRag DishRag is offline
Junior Member
 
Join Date: May 2018
Location: Tennessee
Posts: 57
5 yr Member
Default

Quote:
Originally Posted by janieg View Post
Hi Tina,


I'm trying to learn meditation techniques for when a stress-induced flare hits, but I'm not terribly good at it. I had to laugh at a few of of the meditation "help" videos on YouTube. "Feel your body. Notice every sensation. Start at your toes." Noooooooooooooooo.

---------------------
Jan....You made me laugh out loud...and I'm still chuckling Thank you

Tina, my X was Bipolar(still is). I tried to help her, but it is one of the only things in life I failed miserably at. So in the end we split up(Bipolar was the tip of the mental health iceberg) and I moved on. Even with my PN(which is nowhere near as bad as yours) I moved on and found a better life. What I am trying to say is that this might be a good thing so go with it and enjoy some new found freedom.
DishRag is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
janieg (08-29-2018), tinaanne (08-28-2018)
Old 08-28-2018, 11:42 AM #4
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 732
8 yr Member
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 732
8 yr Member
Default

I'm sorry you're having to deal with all this. CBD is great, and maybe you can try higher and higher doses, slowly moving your way up, to see if you have greater pain relief. I'm thinking of the tincture here. But I wanted to also say that it might be worth trying some THC too. If you're in a legal state or in Canada, or anywhere that has medical cannabis, it might be worth a try. CBD combined with THC and other cannabinoids and phytochemicals can at times be even better for mood and pain, especially if CBD is dominant, maybe at least 3:1 or 5:1.
DavidHC is offline   Reply With QuoteReply With Quote
Old 08-28-2018, 05:46 PM #5
tinaanne tinaanne is offline
Junior Member
 
Join Date: Jan 2012
Posts: 39
10 yr Member
tinaanne tinaanne is offline
Junior Member
 
Join Date: Jan 2012
Posts: 39
10 yr Member
Default

Quote:
Originally Posted by DishRag View Post
Jan....You made me laugh out loud...and I'm still chuckling Thank you

Tina, my X was Bipolar(still is). I tried to help her, but it is one of the only things in life I failed miserably at. So in the end we split up(Bipolar was the tip of the mental health iceberg) and I moved on. Even with my PN(which is nowhere near as bad as yours) I moved on and found a better life. What I am trying to say is that this might be a good thing so go with it and enjoy some new found freedom.
Thanks for your reply - that is not the first time I have heard that I might improve when the initial stress is over from the shock -- Either way, it is really time for me to focus more on myself and what I need. I really have been remiss taking care of ME - first my husband, then kids, then grandchildren an I'll push my self to the max and then crash when it effects nobody but me - stupid! SO #1 right now is focus on me. I got a cute puppy and even though the hand work is more than I really want to do right now, but the unconditional love and the company is amazing. It is a little dog that will stay under 8 lbs.
Tina
tinaanne is offline   Reply With QuoteReply With Quote
Old 08-28-2018, 05:52 PM #6
tinaanne tinaanne is offline
Junior Member
 
Join Date: Jan 2012
Posts: 39
10 yr Member
tinaanne tinaanne is offline
Junior Member
 
Join Date: Jan 2012
Posts: 39
10 yr Member
Default

Quote:
Originally Posted by DavidHC View Post
I'm sorry you're having to deal with all this. CBD is great, and maybe you can try higher and higher doses, slowly moving your way up, to see if you have greater pain relief. I'm thinking of the tincture here. But I wanted to also say that it might be worth trying some THC too. If you're in a legal state or in Canada, or anywhere that has medical cannabis, it might be worth a try. CBD combined with THC and other cannabinoids and phytochemicals can at times be even better for mood and pain, especially if CBD is dominant, maybe at least 3:1 or 5:1.
DavidHC - well I live in state where it is still illegal - but close enough to another state that it is legal and have thought about trying it. I tried "butter" one time (luckily I used half of what was given me) and my heart went racing like crazy, which consequently increased my pain - I am on a narcotic and have worried that mixing the two might be too much, but I take it around the clock. I am serious about finding out more about the 3:1 - my brother who had throat cancer is on 1:1 and swears it would help me -- but again worried about the heart and the mixing - I don't want to be another statistic.

Also, since you are "the resident" CBD expert - I'm on the 1000mg like I mentioned and wondered how much to take a day (I'm doing like 4x times a day) and I'm close to my second week - so how much in your opinion should a person take - the health food store said as much as I want - but that doesn't seem to smart. As I mentioned the lotion has been HUGE in pain relief for me. AND do you think it is a cumulative thing? Thank you so very much

Tina
tinaanne is offline   Reply With QuoteReply With Quote
Old 08-29-2018, 12:14 PM #7
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 732
8 yr Member
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 732
8 yr Member
Default

Hi Tina,

Sure, I can try to help.

If THC doesn't work for you, then don't listen to anyone. Your body will tell you, and you can decide for yourself. THC can have great benefits, but it is known to cause the heart to race or just palpitations. It does that to me in high doses. That brings me to another point: if it does that to you, it's quite possible that it wouldn't at lower doses, which can be tempered by a high CBD strain or the addition of some CBD oil. If you want to try it, a 5:10 or even 10:1 might be the place to start.

As for dosage, that's complicated and partly or perhaps largely personal. You will have to experiment. From what you've said I don't know how many mg you take a day, but only the overall strength of your bottle. As a general note, you should increase the dosage as much as possible or to the point that you get maximum relief. You can slowly increase the dose. In studies, the doses are often upward of 1000-2000 mg a day! So you're safe. You really can take as much as you want. I know people who take hundreds of mg each day. Chronic pain requires higher doses. If you get GI upset or other symptoms, you might cut back a little. Your body will tell you. If you need higher doses and it becomes too expensive, try CBD isolate, which you can buy for $15-20 per gram. And if the lotion works for you, go nuts with it.

Yes, studies seem to suggest a steady use of CBD will ensure a well functioning endocannabinoid system, which interacts with and is responsible for many things in the body, including the immune system. CBD is out of the body within hours to day and some say maximum a week. There was a study done where even heavy users had no traces in their body within a week or less.

Regarding drug interactions, both CBD and THC can do that. CBD apparently makes medication that is processed through the liver less effective. You can find some very limited research on this online. I don't know about THC myself, but it's likely there are issues there too. I would say speak with your doctor, but very few will have a competent answer for you, since one would need to know about the endocannabinoid system and how each cannabinoids works with the different receptors in the body.

I hope some of this is helpful!






Quote:
Originally Posted by tinaanne View Post
DavidHC - well I live in state where it is still illegal - but close enough to another state that it is legal and have thought about trying it. I tried "butter" one time (luckily I used half of what was given me) and my heart went racing like crazy, which consequently increased my pain - I am on a narcotic and have worried that mixing the two might be too much, but I take it around the clock. I am serious about finding out more about the 3:1 - my brother who had throat cancer is on 1:1 and swears it would help me -- but again worried about the heart and the mixing - I don't want to be another statistic.

Also, since you are "the resident" CBD expert - I'm on the 1000mg like I mentioned and wondered how much to take a day (I'm doing like 4x times a day) and I'm close to my second week - so how much in your opinion should a person take - the health food store said as much as I want - but that doesn't seem to smart. As I mentioned the lotion has been HUGE in pain relief for me. AND do you think it is a cumulative thing? Thank you so very much

Tina
DavidHC is offline   Reply With QuoteReply With Quote
Old 08-29-2018, 01:23 PM #8
tinaanne tinaanne is offline
Junior Member
 
Join Date: Jan 2012
Posts: 39
10 yr Member
tinaanne tinaanne is offline
Junior Member
 
Join Date: Jan 2012
Posts: 39
10 yr Member
Default

Quote:
Originally Posted by DavidHC View Post
Hi Tina,

Sure, I can try to help.

If THC doesn't work for you, then don't listen to anyone. Your body will tell you, and you can decide for yourself. THC can have great benefits, but it is known to cause the heart to race or just palpitations. It does that to me in high doses. That brings me to another point: if it does that to you, it's quite possible that it wouldn't at lower doses, which can be tempered by a high CBD strain or the addition of some CBD oil. If you want to try it, a 5:10 or even 10:1 might be the place to start.

As for dosage, that's complicated and partly or perhaps largely personal. You will have to experiment. From what you've said I don't know how many mg you take a day, but only the overall strength of your bottle. As a general note, you should increase the dosage as much as possible or to the point that you get maximum relief. You can slowly increase the dose. In studies, the doses are often upward of 1000-2000 mg a day! So you're safe. You really can take as much as you want. I know people who take hundreds of mg each day. Chronic pain requires higher doses. If you get GI upset or other symptoms, you might cut back a little. Your body will tell you. If you need higher doses and it becomes too expensive, try CBD isolate, which you can buy for $15-20 per gram. And if the lotion works for you, go nuts with it.

Yes, studies seem to suggest a steady use of CBD will ensure a well functioning endocannabinoid system, which interacts with and is responsible for many things in the body, including the immune system. CBD is out of the body within hours to day and some say maximum a week. There was a study done where even heavy users had no traces in their body within a week or less.

Regarding drug interactions, both CBD and THC can do that. CBD apparently makes medication that is processed through the liver less effective. You can find some very limited research on this online. I don't know about THC myself, but it's likely there are issues there too. I would say speak with your doctor, but very few will have a competent answer for you, since one would need to know about the endocannabinoid system and how each cannabinoids works with the different receptors in the body.

I hope some of this is helpful!
Thanks so much - ok so you asked how much CBD is in my 1000mg bottle - I called and they told me it has 33mgs of CBD per dropper - I am taking 4 droppers a day at this point. So according to what you have said I can take a LOT more, right. They do carry the 5000 with 83mg of CBD all full spectrum which means it has the legal amount of THC which is .3 in my state. It runs $250 dollars but if it works it is worth it for me - honestly the amount of money I pay for the meds for this illness is crazy - thankfully we have the means. Thankfully my stomach is like a rock and I can take anything - only the dang constipation that comes with these prescription meds - but I can take anything so far -- I do not have a medical marijuana card, and am nervous as I mentioned because of my racing heart. I would love to get OFF the narcotics and use whatever I need, but it honestly is hard to find someone you trust in this business. So for now, I am dealing with the CBD. I have an appointment at Mayo in November and will talk with my neurologist about this - he is really opened minded and has worked with me for over 10 years. Love the guy.

One question I have is the 5:10 etc - does that mean 5 HTC and 10 CBD? I'm 62 and this is all new to me - even though I experienced the 70's in So Cal as a semi hippie (LOL so funny now) but didn't do much with drugs.

Thanks for all your help!! I'm feeling a bit better than I did last week when I first wrote - I love this place - people understand this level of pain and are always willing to help -- hope you are having a good day -
Tina
tinaanne is offline   Reply With QuoteReply With Quote
Old 08-29-2018, 02:20 PM #9
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 732
8 yr Member
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 732
8 yr Member
Default

You're welcome. I'm happy you're feeling a bit better. I hope that continues.

Four full droppers a day is a healthy dose of CBD, but studies show that you can safely take much more. But I'm not a physician and there are limited studies. This is why I said listen to your body and use your judgment. But studies and anecdotal evidence show that humans tolerate high doses of CBD without serious side effects. But it's always worth being careful and slowly increasing the dosage of anything.

Sorry, that was a typo, it should have been 5:1 CBD to THC.
DavidHC is offline   Reply With QuoteReply With Quote
Reply

Tags
cbd, ideas, lyrica, pain, time


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Those with sensory small fiber baba222 Peripheral Neuropathy 3 10-20-2014 03:57 PM
steroids for small fiber sensory neuropahthy sbaureis Peripheral Neuropathy 2 05-24-2013 01:30 PM
small fiber sensory neuropathy ann-elizabeth Peripheral Neuropathy 28 03-19-2012 07:55 PM
Small Fiber Sensory Neuropathy Silverlady Peripheral Neuropathy 1 10-22-2007 01:02 AM
Article on Small Fiber Sensory Neuropathy Silverlady Peripheral Neuropathy 2 06-22-2007 09:27 PM


All times are GMT -5. The time now is 06:17 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.