Looking for alternatives that work

Kels

New member
Joined
Jun 3, 2021
Messages
1
Reason
DX FIBRO
Diagnosis
01/1998
Country
US
State
MD
I have been diagnosed since the late 90's with fibro. Due to unacceptable side effects, I am unable to take Lyrica or Neurotin. Lyrica worked wonders for my pain but it slowed my brain down so much I couldn't function. I am currently taking a low dose of Cymbalta (can't go higher). Menopause, weight gain, migraines, hip, leg and foot pain, and all of my other fibro symptoms are kicking my butt right now.

Has anyone used a product called Nerve Renew? It's for nerve pain. I have seen good reviews but you usually can't trust those. Since prescriptions aren't working for me I really need to start looking else where. One thing I have considered looking into is medical marijuana but the THC gives me pause. I just purchased products from a company out of Louisiana. They have full spectrum CBD products and products for diabetic nerve pain using PEA. However, these products don't seem to be helping much.

Any suggestions are welcome.
 

Jemima

Active member
Joined
Jul 30, 2020
Messages
91
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi Kels,

As you know, we all seem to get different results from different things, but I can tell you what's helped me so far. I've tried dozens of supplements over the past year and a half, as well as dietary and lifestyle changes. I am the human guinea pig!

For the dreaded fibrofog, I found that supplementing for mitochondrial support made a huge difference. I'm taking CoQ10 and Alpha Lipoic Acid - these two were a game-changer in terms of me getting my noggin working again!

For stress and feeling low, I found that a low-dose of Lithium Orotate made me feel much better. This is a pretty controversial supplement because Lithium Orotate has not been very thoroughly studied, and conventional Lithium Carbonate puts quite a strain on the body at its classically prescribed high dose. But, those who use LO therapeutically take it at a tiny fraction of the amount - in my case, 5mg vs potentially hundreds of mg per day of LC that might be prescribed for bipolar. You can google it if you're curious!

Most recently, I've started taking Magnesium Glycinate (this combo versus any other form of Magnesium) which is popular for depression and insomnia, and does get mentioned for fibro. I am sleeping much, much better, which is helping me to keep pain flares at bay.

The other things that seem to have helped me a lot is cultivating some really strong stress management tactics, and walking every day that I can manage. Together, everything has added up to a massive reduction in my pain symptoms, although I'm still vulnerable to going the wrong way if I overdo things!

Others here on the forum seem to have found benefit from different supplement regimes, but maybe something above will help ;) Please do share if you have any successes!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
There are lot of different things you can do or try, that may help. Getting yourself into the best overall health you can is one huge key to managing Fibro. I suggest you read my post that is pinned at the top of the General forum, as it lists many things that have been known to help many people. It's best if you do not rely on drugs or doctors for your treatment, at least not entirely, because there's nothing that doctors prescribe that helps everyone, while improving your physical and mental health does.

As for medical cannabis, here's my advice:
Be very careful where you buy CBD oil because there are many scams and if you get it online you may be paying a lot for just plain olive or coconut oil.
Get CBD oil at a trusted dispensary, or you can try Global Xtracts, which you can get online, and for which I can vouch because it works for me.
I hate to say it, but it is possible you bought something that was a fake. Not saying you did, but just to be careful.

Next thing is that very few people get substantial relief from CBD alone and it is best used with some THC content. What I suggest is what I did, which is to buy the lowest concentration of THC tincture that I could, and only use one drop alongside the CBD. If no result, two drops. And so on, raising and lowering the amount of CBD and THC independently of each other. Doing this, I found what amount of each I needed to use for this kind of pain, or for that kind. I don't really like getting high, so I have found what works for me so that I don't get high.

Make sure you only use the tinctures at first because they are the easiest to regulate the quantity you take, and only move on to edibles like gummies when you are more experienced, because those are less precise. And of course, smoking and vaping is as bad for you as smoking tobacco, so you don't want to do that.

Both the CBD oil and the THC tinctures come in different strengths, so be aware of that. "One half ml of CBD oil" doesn't tell you anything unless you know what the concentration is. You can get 200 mg per ml, up to 1200 mg. per ml, with both the CBD and the THC tinctures, so start with the lowest you can get of the THC. Go as high as you want with the CBD but just be aware that if the concentration is high you will need less.

Experiment. For me, it has made a big difference. I am not pain free, and it doesn't work on all kinds or levels of pain, but it is a huge help.
 

Creola17

Distinguished member
Joined
Sep 11, 2018
Messages
102
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Nv
If you infuse coconut butter with marrijuana and add it to your favorite lotion it should help. I make it with essential oils as well and it really helps with pain.
 

Patrick

New member
Joined
Jun 26, 2020
Messages
2
Reason
DX FIBRO
Diagnosis
08/2018
Country
UK
Try this for your leg pain at night.
Put a hard ball baseball or cricket on the bed then while lying flat, rest your calf muscle on it. Leave it there for 2 minutes then roll it up or down to a new position.
For me it turns the pain to pleasure.
I actually use a hand barbell with round contoured ends as it stays where you put it and is easy to manipulate.
You can even roll your feet onto it and massage the soles.
After 1 week my RLS and leg pain that I had suffered with has gone.
Please note, I am of average build and weight. If you are overweight you might need to use something larger and softer.
I know it sounds too good and simple to be true but just give it a go.
The pressure on the muscles nerves and tendons of the back leg seems to emulate a strong Thai massage and I sincerely hope the results will be instantaneous for you too.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
442
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Put a hard ball baseball or cricket on the bed then while lying flat, rest your calf muscle on it. Leave it there for 2 minutes then roll it up or down to a new position.
Glad to hear that it helps you! I tried things like this and foam rollers etc. which were recommended or done to me by regular physiotherapists, but it caused great pain, incl. cramps. Nowadays I probly cd do them, but that's thanks to my acupressurist, who "causes" well-dosed pain whilst treating me, but that similarly subsides whilst she is doing it, and keeps getting old and new pains down. Her new areas are my belly and my loins incl. a scar there. Since then I can now tie my shoes again standing up and get over my bikes bar with less problems. Trying with stretching myself for months now didn't help much. (Getting on my bike I'm still often unstable getting on and off, especially when cycling before.) We find the new areas by watching how my body reacts to the ear acupressure and talking about anything that crops up, even if it's not pain or is just short. She then knows or quickly finds what spots to press to make me scream n' shout n' whooo-whooo, but she's treated me so long now (whole body cryotherapy one year, acupressure 8 months, 2x2h/wk) she usually knows how far she can go....
 
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