Where is everyone from and what treatment works for you?

Posted by bevcalvil @bevcalvil, Mar 31 7:53am

Hi! My name is Beverly and live in Jax Florida. Where is everyone from? And is anyone here found a treatment plan for fibromyalgia that works with you? Thank you!

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

Hello @hraka13 and @daisy17,

You may find this information from Mayo Clinic on Naltrexone useful: https://www.mayoclinic.org/drugs-supplements/naltrexone-oral-route/description/drg-20068408.

"Naltrexone is not an opioid. It works by blocking the effects of opioids, especially the euphoric and rewarding feeling that makes you want to use them. It also may block the euphoric and rewarding feeling that may make you want to use alcohol. It will not produce any opioid-like effects or cause mental or physical dependence. It will not prevent you from becoming impaired while drinking alcohol or using opioids."

There are other effects of Naltrexone that you will need to consider and should discuss with your provider before taking.

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Nothing works for me , I am sensitive to everything and or the medications cause too many health issues. it's normal for us to have sensitivity though. excersise and healthy eating is my only defense.

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Profile picture for bevcalvil @bevcalvil

@hraka13 , thank you Carmen for your message! Nice to meet you. It is unfortunate that we need to take upon ourselves to find a way to cope with this condition . It is frustrating that even speaking to our doctors that suppose to be helping us act and think that it is all in our head. Nobody can really understand how we feel until they are in our situation. Which sometimes i wish they could feel it so that they can experience how hard it is to live with this pain.

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@bevcalvil my doctor never speaks of it , she told me to do whatever Mayo clinic says , it's sad but fine with me as I feel Mayo is the best

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Profile picture for hraka13 @hraka13

Carmen from the Oregon Coast. I’m 64 and have had fibromyalgia for probably 45 years, based on symptoms (per my former physician). I was diagnosed around 30 years ago. There was little known about it in 1997-98 and nothing in 1981. (I often was told it was in my head, a frustrating reaction to many female complaints.)
Since pain meds and mild muscle relaxants are not a good idea for me (recovering addict, 28+ years), I use ibuprofen for acute pain, glucosamine chondroitin and CBD for long term pain management, and I try to get the needed amount of sleep. (This can vary with age.) I don’t know if my mental health meds have any bearing on my symptoms one way or another.
Stretching and mild exercise are recommended, but I’ll admit to not doing much of either for some time. I did get a foam mattress cover for my bed to soften the pressure on my hips, and I use a heater mattress pad in low-med setting to help relax during sleep.
If anyone has any other ideas or suggestions, I’m open to them.

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@hraka13 I forgot to mention.
From Oregon 👍

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Profile picture for daisy17 @daisy17

@hraka13 Naltrexone is not a narcotic and not addicting.
This is from AI Assist: "Low dose naltrexone is not a narcotic; it is an opioid antagonist that does not have any narcotic effects or abuse potential. It is used primarily to help regulate the immune system and manage chronic pain."
And "Low dose naltrexone is not addictive and does not cause physical dependence. It is used primarily for its anti-inflammatory effects and to help manage chronic pain and autoimmune conditions."

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@daisy17, I’ll ask my doctor when I set up with someone here. The pain is getting bad, but a lot of that is inactivity and weight. (I’ve gained several pounds. Only about 30 pounds overweight but I’m small so it affects me.)

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Profile picture for coryl @coryl

@hraka13 thank you so much for reminding me. I used to take melatonin but haven’t for several years. I’ll pick up some tomorrow and give it a try again. I’m always willing to try things, especially more natural ones.

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@coryl, just remember even tho it says to take 5 mg, start with a low dose. Too much can make me feel really groggy in the morning.

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Profile picture for magsm @magsm

@hraka13 It may also be worth looking at your diet. My GP recommended I try a high protein- low carb diet, others feel a vegetarian diet made a difference. I take kefir, kambucha an alternative and find less stomach symptoms.

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@magsm, I know what I need to do but motivation is a problem. I’m feeling better since I moved closer to family. Actually making friends in my new town.

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Profile picture for hraka13 @hraka13

@filipina, I get mine from a company called Entourage Hemp. They’re 50mg “microcaps” and don’t make me burp and taste the “bong water” taste I got from the oils. I used to take 2 per day but finances have made me do down to 1 per day.
I’ve tried several diff ways, liquid, capsules, and oils (those made me burp. Nasty flavor too). I was getting them from a smaller company but they stopped carrying this particular one and told me to go ahead and buy direct. I thought that was mighty fine of them not to try to pressure me into changing to something else.

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@filipina, I try to wait until I get an email that they’re on sale, often BOGO or 1/2 price.

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Profile picture for hraka13 @hraka13

@coryl, just remember even tho it says to take 5 mg, start with a low dose. Too much can make me feel really groggy in the morning.

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@hraka13 thanks, will do.

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I am Mary,( guinea pig lover!)
I live in London England. I have only just been diagnosed, last September after 5 years of constant chronic pain even before that probably and have been through all the hospital departments in the NHS. They thought I was celiac at one point, so I went on gluten free diet for years which didn't work. duloxetine has made me dizzy and I was in hospital twice for falling over.
When l had low speed car crash with lorry had a big flare and needed medication. I have been on other meds over the years but didn't know it was fibromyalgia and nothing helped. I am now on known meds that help fibromyalgia, amitriptyline and pregabalin which although makes me tired helps alot with the pain. The only disadvantage is pregabalin is a class C drug here in the UK and I have to go back to GP every month to ask for another month's worth of tablets. Good luck everyone finding what works for you. It's certainly up and down and you never know how you're going to be each day, at least I have found a solution for now to take the edge off.

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