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CountryGirl

New member
Joined
Jun 17, 2016
Messages
5
Reason
DX FIBRO
Diagnosis
08/2012
Country
US
State
WY
Well I'm new here so thought I would post. I've had fibro for several years and like many spent the first 3 screaming WHY & trying ever drug that the big pharmaceutical companies push. I tried them all and then found an amazing Dr who was willing to work with ME & let me lead my journey.

For the past 1.5 what has worked for me is Naltrexone 4.5mg (this is an inexpensive drug which has been around for decades) this did wonders when I first started taking the drug. Then I take a flexural at night to help with the tension we all deal with when we sleep. And for my CFS I take Aderall in the morning (but this I must rotate off so not to become dependent)

It would be nice to hear if anyone else has tried the Naltrexone and how that may be working for you. I think its reaching its life span with me (i say this because from experience no drug seems to work long term; but this one has defiantly worked longer than any others)

I used to be on 9 different meds (you know the routine, meds for side effects of meds) until I just couldn't take it anymore. Now i'm down to 3 and use as many natural herbal treatments as possible. I have what I call Butterfly Bath Tea made out of all natural herbs that I use as a soak in a hot bath and this seems to give me some great relief before bedtime.

Anyways, Nice to meet everyone and looking forward to making a few friends here.
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
It's so frustraiting waiting for fda appoval on fibromialga. I tried looking up Napraxel . Looks like it's good for coming off opiots. How is it for pain? Did you have any side effects? Thanks for sharing.
 

CountryGirl

New member
Joined
Jun 17, 2016
Messages
5
Reason
DX FIBRO
Diagnosis
08/2012
Country
US
State
WY
Yes it worked better then any other drug I tried. It has worked for a little over a year but i think its slowly not working or I'm just having more breakthrough pain. But when i first started taking it, i wanted to kiss the doctor!

It is an opiate blocker and have been used for decades to treat alcoholism or other drug addictions. Not by making them sick, but rather by blocking the "high" feeling they get by using alcohol. The dose they used was 50mg so you can't get it in the smaller dose and it must be made by a compounding pharmacy (for those on medicaid they won't cover this) There is a link on youtube of a dr talking about it towards the end of his post. It is quickly mentioned which is why i didn't try it for years and tried all the other drugs approved for FMS. I will try to find the link to that video and post it here.

Basically it says that they found when you treat with 4.5mg the drug causes your brain to think that you need more endorphins so your body actually creates more endorphins. Endorphins being your bodies own natural pain killer. (runners high)

But here is the best part. Monthly out of pocket cost $45

My doctor allows me to search for works best for me but when i asked him if any of his other patients had taken this he said no. For me it made a world of difference / but again that seems to be changing after 2 years. But even if 2 years was all I got then it was well worth it.
 

CountryGirl

New member
Joined
Jun 17, 2016
Messages
5
Reason
DX FIBRO
Diagnosis
08/2012
Country
US
State
WY
ok so i found the link and its not exactly how i thought it worked but here is the link so you can watch it. It is briefly mentioned around 45:45 and they were still dong studies on it at that time. But i haven't heard anything further on this so was wondering if anyone else had tried it.

 

ladydragonfly

New member
Joined
Jul 14, 2016
Messages
1
Reason
DX FIBRO
Diagnosis
02/2014
Country
US
State
Arkansas
I have been on Low Dose Naltrexone (LDN) for about a year now. When I first began it made a tremendous difference in how i felt. Much improved energy level and less stiffness. Slowly over the year it seems to be not quite so effective. But I still take it. I tend to take one pill on most days and then on those days that I know the stress level at work is usually worse, I double up on it. I also take Flexeril in the evening, but I am about to give up on it. I don't think it really has any effect anymore. Guess my tolerance to it has built up. May try going off Flex for a week or two and then try it again and see if it helps. I really do recommend the LDN, even if you have to play around with the levels a little now and then.
 
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