Its MerryJayneFriday and this is my history

[MerryJayneFriday]

Hello all, I am from the Lyrica Facebook group. I was injured on March 27 2009, I ruptured 3 discs all at once lifting a cattle panel that had frozen to the ground.  I had back surgery 5 months later that failed. I was already on narcotic pain killers and when my back surgery failed my primary care MD was just trying to get me out of pain the best way he knew how, and began prescribing more and more drugs. By 2011 I was on Fentanyl patches 150mg, Morphine, percocet, oxycontin, promethazine, and 900 mg of Lyrica.  I was a zombie. In Sept 2012 I got my spinal cord stimulator implanted and began the journey of tapering off my meds.  Over the next few years I tapered off Fentanyl and morphine and in 2016 I began tapering off Lyrica (Pregabalin).  I might add I did this all by myself without medical assistance.  I dropped the Lyrica way too fast and big at first and I thought I was dying! Really. I was so sick,  I was in bed for 2 weeks straight,  flu like symptoms.  Gosh it was awful. I would crawl back and forth from the bed to an epsom salt bath and back to bed to sweat and shake some more. God led me to the Lyrica group on Facebook and I was able to start a sensible taper. I used the 10 percent or less method and held for about a month in between drops, sometimes longer. I was Fire Chief in my little burg when I was tapering and there were many times I just HAD to be well to serve my community,  so I held my taper.  But I believe my slow taper helped my poor brain to heal, and in April of 2020 I finished Lyrica for good!! I am still taking a small amount of Oxycodone daily as I was able to kick the oxycontin 5 months ago.  I plan on tapering off the Oxycodone hopefully I will be Rx free by the end of this year. But im not going to get into a rush. 

The very best helpers I found on my journey was medical marijuana,  epsom salt baths, prayer and worship,  Passion flower extract and the Facebook Lyrica Survivors group.  I also found I had to really watch what I eat and drink,  caffiene and alcohol are both no go's now. I also found that if I eat what I call a clean diet ( no processed foods, very little sugar,  mostly good meats veggies and fruits)  my pain is always less. I used to really enjoy one cup of dark black coffee in the am but since I came off Lyrica I get the heebie jeebies real bad when I drink full strength coffee!  So I found a good decaf and I can have one cup. Just one. I have also found I am much more sensitive to chemicals since I came off Lyrica. This journey has certainly changed my life!  I used to be kind of judgemental when it came to drug addicts, I had never been behind a substance in my whole life!  But the Lyrica talked to me from a closed bottle. Called my name!  So through this journey God was able to rid me of that ugly self righteousness!  Woo hooo!!  I totally understand now. And I hope I can use my experiences to help others. 

In the words of Jerry Garcia, what a long strange trip it's been!  If you have any questions please don't hesitate to ask me as I've probably been thru it lol.  I'm really glad to be alive and awake and here to try to help. 

 

All the best,

MJF

[Blossom71]

Wow @MerryJayneFriday, that's one heck of a journey!!   Well done for getting to where you are today, it's inspiring.

I've seen you kicking around on other peoples threads but thought I'd drop in and say "Hello!"

[OldDodgy]

@MerryJayneFriday

 

Great to hear from you.. !

 

It’s a bumpy old ride. But chin up! 
 

OldDodgy. Aka Dxxxie 

[MerryJayneFriday]

Hello back @OldDodgy  Dr dxxx

And @Blossom71

 Thanks for the shout it's great to be here. I'm still learning the site so have patience but im here to help if I can. 

Hang in there and Chin Up!!!

Woo hoooo!!

 

MJF

[themartian1000]

On 3/16/2022 at 7:55 AM, MerryJayneFriday said:

Hello all, I am from the Lyrica Facebook group. I was injured on March 27 2009, I ruptured 3 discs all at once lifting a cattle panel that had frozen to the ground.  I had back surgery 5 months later that failed. I was already on narcotic pain killers and when my back surgery failed my primary care MD was just trying to get me out of pain the best way he knew how, and began prescribing more and more drugs. By 2011 I was on Fentanyl patches 150mg, Morphine, percocet, oxycontin, promethazine, and 900 mg of Lyrica.  I was a zombie. In Sept 2012 I got my spinal cord stimulator implanted and began the journey of tapering off my meds.  Over the next few years I tapered off Fentanyl and morphine and in 2016 I began tapering off Lyrica (Pregabalin).  I might add I did this all by myself without medical assistance.  I dropped the Lyrica way too fast and big at first and I thought I was dying! Really. I was so sick,  I was in bed for 2 weeks straight,  flu like symptoms.  Gosh it was awful. I would crawl back and forth from the bed to an epsom salt bath and back to bed to sweat and shake some more. God led me to the Lyrica group on Facebook and I was able to start a sensible taper. I used the 10 percent or less method and held for about a month in between drops, sometimes longer. I was Fire Chief in my little burg when I was tapering and there were many times I just HAD to be well to serve my community,  so I held my taper.  But I believe my slow taper helped my poor brain to heal, and in April of 2020 I finished Lyrica for good!! I am still taking a small amount of Oxycodone daily as I was able to kick the oxycontin 5 months ago.  I plan on tapering off the Oxycodone hopefully I will be Rx free by the end of this year. But im not going to get into a rush. 

The very best helpers I found on my journey was medical marijuana,  epsom salt baths, prayer and worship,  Passion flower extract and the Facebook Lyrica Survivors group.  I also found I had to really watch what I eat and drink,  caffiene and alcohol are both no go's now. I also found that if I eat what I call a clean diet ( no processed foods, very little sugar,  mostly good meats veggies and fruits)  my pain is always less. I used to really enjoy one cup of dark black coffee in the am but since I came off Lyrica I get the heebie jeebies real bad when I drink full strength coffee!  So I found a good decaf and I can have one cup. Just one. I have also found I am much more sensitive to chemicals since I came off Lyrica. This journey has certainly changed my life!  I used to be kind of judgemental when it came to drug addicts, I had never been behind a substance in my whole life!  But the Lyrica talked to me from a closed bottle. Called my name!  So through this journey God was able to rid me of that ugly self righteousness!  Woo hooo!!  I totally understand now. And I hope I can use my experiences to help others. 

In the words of Jerry Garcia, what a long strange trip it's been!  If you have any questions please don't hesitate to ask me as I've probably been thru it lol.  I'm really glad to be alive and awake and here to try to help. 

 

All the best,

MJF

I have followed your story with interest, as it seems that you tapered very slowly. This is my plan too, but I am still so worried to stay at my high dose longer (I was at 600mg only a few weeks before I started tapering down, have been on 7 months total, now at 435mg and hit a big WALL!!!! I feel so bad because this seems so big still. I don't want to injure my brain staying on this high dose too long, but don't want to injure it getting off too fast! Such a predicament. But I think I really do have to hold now. I tried decreasing from 2mg to 1mg drops but still not great. Maybe a few weeks hold will refresh me (hopefully not months, haha). Anyway, thoughts, inspiration or advice so appreciated!

[MerryJayneFriday]

Ooooh I get it. Such a conundrum, drop and hurt or hold and damage??  I was on for a very long time at high doses so I wasn't really worried about damaging my brain any more lol.....figured that had already been done. I just concentrated on getting off.  And yes sometimes I held longer than 4 weeks because I had to be well.  Sometimes it took me some time to screw up the courage to be sick again.  But I just kept putting one foot in front of the other until I was finally finished!!  I always knew it was time to drop again when I could eat a couple of good meals again. 

I also know it seemed like my brain always wanted to imagine worst case scenarios with my health situation (quite honestly it was lots of stuff not just my health)...like I had a knot in my neck and I was just sure it was cancer.   Turns out it was nothing, I got it checked out.  And it went away it seems like it was a swollen lymph node for all the drs could tell. I think it was because of the drugs leaving my body. I'm not lumpy anymore lol. 

Diet was (and is) a real important part of staying healthy, for me it involves eating mostly fresh fruits veggies nuts and some meat and fish and seafood. If it is processed or has more than 5 ingredients on the package its out. Caffiene and alcohol are out. I can't use much sugar either, it causes pain and inflammation and sometimes anxiety for me. And excercise. Make sure you try to get some walking in the outdoorland, gently. Remember strenuous excercise can bring on waves. When you walk take the time to really look at everything,  they sky, the trees, the different texture. Inhale deeply and smell the sunshine. Hug a tree if you can. 💗   

I used a lot of natural things to help my withdrawals, epsom salt baths, cannibis and chamomile tea were all best friends. Passion flower extract for anxiety I used it sublingual.  Prayer and worship helped me a lot too. I sure hope you feel better soon. And always holler if I can help XO 

MJF

 

[themartian1000]

Thank you so much for your reply MerryJayneFriday. Sorry I am a bit slow on the uptake these days. I decided to split the difference and taper at 1mg a day. Since I am above 400mg, I figured this was pretty much within the margin of error for a powdered capsule anyway. So far it has been fine. I haven't felt like myself for so long now, I am starting to wonder who that is? It's never a place I thought that I'd be. I mapped out my whole taper on a spreadsheet. If I follow the 10% rule down to less than 10mg, it does appear to be over 3 years of tapering. Yikes!!!

 

I have so many questions that I wish I could find out from others who have done this like 1) do you feel better as your dose gets lower? 2) do you heal slowly as you taper 3) has anyone tried anything novel like high dose thiamine or niacin to aid with healing the brain. Well, I probably have even more questions than that, I feel like I have them all the time!

[Lovetobefree]

@MerryJayneFriday any experience with others you know of previously on survivors page that had issues with Mast cell activation syndrome and had success? I'm not diagnosed as having this but following catching covid it's looking very much like this is what I have.  Have contacted a Dr here to see if they can help and praying.

[themartian1000]

@Lovetobefree it's nice to see you here! Since I'm stuck at 410mg, I figured I'd poke around to see if I could find some encouraging stories. I hope that you get answers re MCAS. As I mentioned, it had been a pretty rare diagnosis, so finding others to help might be hard but surely not impossible. Hoping you feel better soon. 

[Lovetobefree]

14 hours ago, themartian1000 said:

@Lovetobefree it's nice to see you here! Since I'm stuck at 410mg, I figured I'd poke around to see if I could find some encouraging stories. I hope that you get answers re MCAS. As I mentioned, it had been a pretty rare diagnosis, so finding others to help might be hard but surely not impossible. Hoping you feel better soon. 

Hi The martion,

 

OldDodgy has said he has found on the internet that covid can indeed affect the gaba receptors amongst others, interacting with glutamate and serotonin etc.....so just like you said I may be in a glutamate spike/storm.  Is there anything you can recommend?  I'm in so much pain.

[themartian1000]

I'm so sorry Lovetobefree, this process is so hard. I know the files at the old group are still there, and they mention a lot of things for pain. I have to be honest, no supplement has ever done a lot for me, and even when they do, they tend to stop working. I can see healing when I look back 6 months or a year, but it's so hard when it's so slow. I imagine anything that you can do to reduce inflammation will reduce pain. People vary so much in what they can tolerate too. Vitamin C, D, magnesium, ALA, B vitamins are all helpful. There is a niacin / melatonin protocol for covid, but honestly I would use niacinamde riboside since I am sensitive to things that require a lot of methylation. Melatonin is supposed to reduce brain inflammation as well, though it makes me so groggy. Progesterone is a brain anti-inflammatory as well, but can be tricky for females because too little can make estrogen dominant and then you feel worse! Everything is just so darn tricky for us, and we are all so different. Of course, doctors don't know much either, so that adds to it as well. 

 

Hang in there, I have no doubt that with a bit of time, you are going to get a lot better. Nourish yourself and try to reduce stress as much as you can. 

[Lovetobefree]

22 hours ago, themartian1000 said:

I'm so sorry Lovetobefree, this process is so hard. I know the files at the old group are still there, and they mention a lot of things for pain. I have to be honest, no supplement has ever done a lot for me, and even when they do, they tend to stop working. I can see healing when I look back 6 months or a year, but it's so hard when it's so slow. I imagine anything that you can do to reduce inflammation will reduce pain. People vary so much in what they can tolerate too. Vitamin C, D, magnesium, ALA, B vitamins are all helpful. There is a niacin / melatonin protocol for covid, but honestly I would use niacinamde riboside since I am sensitive to things that require a lot of methylation. Melatonin is supposed to reduce brain inflammation as well, though it makes me so groggy. Progesterone is a brain anti-inflammatory as well, but can be tricky for females because too little can make estrogen dominant and then you feel worse! Everything is just so darn tricky for us, and we are all so different. Of course, doctors don't know much either, so that adds to it as well. 

 

Hang in there, I have no doubt that with a bit of time, you are going to get a lot better. Nourish yourself and try to reduce stress as much as you can. 

Thank you so much for your informative reply.