1. < Fibromyalgia
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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.

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jeannesf1 | @jeannesf1 | Apr 6 11:46am
In reply to @beejenigma "@jeannesf1 Contact Carefirst Pharmacy in New Jersey. They compound my LDN. You will have to have..." + (show)
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@jeannesf1 Contact Carefirst Pharmacy in New Jersey. They compound my LDN. You will have to have your dr call it in. They are great.

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@beejenigma thank you
. The problem is the on line doctor that was prescribing the LDN, haven’t been able to get through to. My regular insurance (Kaiser) will not prescribe it.

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Beejenigma | @beejenigma | Apr 6 1:24pm
In reply to @jeannesf1 "@beejenigma thank you . The problem is the on line doctor that was prescribing the LDN,..." + (show)
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@beejenigma thank you
. The problem is the on line doctor that was prescribing the LDN, haven’t been able to get through to. My regular insurance (Kaiser) will not prescribe it.

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@jeannesf1 Buy it. It is not covered by insurance but have the dr rx it and contact Carefirst

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jeannesf1 | @jeannesf1 | Apr 6 3:50pm
In reply to @beejenigma "@jeannesf1 Buy it. It is not covered by insurance but have the dr rx it and..." + (show)
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@jeannesf1 Buy it. It is not covered by insurance but have the dr rx it and contact Carefirst

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@beejenigma Thank you so much!

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kjofmd | @kjofmd | Apr 6 7:07pm
In reply to @jeannesf1 "Im from San Francisco, California. Was diagnosed about 18 years ago. Have taken myself off the..." + (show)
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Im from San Francisco, California. Was diagnosed about 18 years ago. Have taken myself off the Cymbalta (awful withdrawal), ongoing long term mental side effects and also got off gabapentin (memory problems). Was taking LDN for almost 6 months and haven’t seen much change. Couldn’t get back on doctor’s website to order more so gave up. Anyone know where I can order some? Using heating pad (my first go to but relief is temporary), or ice. Not so often Advil or muscle relaxant. I’ve ordered some CBD/hemp gummies and will see how it goes. I also go to a chiropractor and also provides a break from the pain. Just managing but grateful pain not as bad as when I first got sick. I’m tired. Hoping and praying something will work to at least get some more added relief occasionally instead of ongoing chronic pain.

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@jeannesf1

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kjofmd | @kjofmd | Apr 6 7:08pm

If you haven’t already, I suggest you join the LDN Research Trust Facebook group. They have lots of science-based info as well as lists of providers.

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jeannesf1 | @jeannesf1 | Apr 6 8:19pm
In reply to @kjofmd "If you haven’t already, I suggest you join the LDN Research Trust Facebook group. They have..." + (show)
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If you haven’t already, I suggest you join the LDN Research Trust Facebook group. They have lots of science-based info as well as lists of providers.

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@kjofmd I will! Thank you, I really appreciate it!

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sallylang | @sallylang | Apr 7 10:52am

I am from Wisconsin. Started having a diagnosis of myalgia in the 1990"s. Formally diagnosed in 2017 with a blood test from Epic-genetics in California. Have always been able to handle the pain by remaining very active. I am now 76 and the past couple of years have been terrible. I don't know what causes what pain because I have so many secondary diagnoses from Fibromyalgia, osteoarthritis, spinal stenosis, slipped disc, restless legs, IBS-C, among other medical problems. Furthermore, I have not taken any specific medications other than Tylenol for the pain. I am grateful I wake up breathing every day. I do what I can do during the day and take many coffee breaks during the day. Thankfully I am retired and don't have many demands of my time.

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hraka13 | @hraka13 | Apr 7 10:10pm
In reply to @tdinnen "@hraka13 Have you tried Entourage Hemp sleep caps?" + (show)
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@hraka13
Have you tried Entourage Hemp sleep caps?

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@tdinnen, do they have melatonin? I take melatonin several times per month. It helps me relax and fall asleep and stay asleep most of the night.

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bevcalvil | @bevcalvil | Apr 13 6:13am

Thank you all for the comments. Nice to know someone that is going through the same thing. It made me feel i’m not alone in this journey. I really hope they put more effort with the research on this disease to find a cure or better treatment plan. Praying for everyone who suffer with this disease to find some relief and hope that we can get back to less or no pain life. May God bless us all.

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canarycrier | @canarycrier | Apr 27 10:34pm

I am 58 and live in the Bay Area of California. My Fibromyalsia symptions are much better on duloxatine.In addition the LD Naltroxone that I take for long covid has also helped my fribromyalsia. I have been taking duloxatime for close to 20 years and the LS Natroxone for almost 2-years.

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