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lynnnelson

New member
Joined
Jan 15, 2014
Messages
5
Reason
DX FIBRO
Diagnosis
09/2013
Country
US
State
NC
Greetings,

I'm diagnosed with Hashimoto's and Fibro and have extreme pain and fatigue. The pain is in all major joints with aching, soreness and stiffness in all muscles. Brain fog and anxiety along with my low functioning thyroid (what's left of it). The autoimmune #'s were off the charts so I know the inflammation is very high. Anyway, I've been begging my endocrinologist for T3 added to my T4 medication and she's reluctantly done it. I've learned that the high inflammatory numbers showing the autoimmune condition also disrupt my body's ability to properly convert T4 to T3 and this is the case with Hashimoto's, I'm learning. This T4 to T3 conversion issue is one of the underlying causes for the pain. I believe I've been diagnosed with Fibro as a result of my Hashimoto's.

Anyway, getting to the point of my post, it seems to me that many doctors are turning to Antidepressants as pain management tools: Cymbalta, Sevella, Lyrica.... And that there is a direct correlation between serotonin levels and pain management. I had horrible side effects with Cymbalta! And went to a pain Doctor who said that Tramadol was dangerous when taken with any of these Antidepressants that are being widely prescribed. Well most all of them have horrible side effects, mostly adversely affecting the immune system as well as other serious conditions that come from the side effects. I have been desperately studying supplements and alternatives to these drugs, like Cymbata and Sevella and Lyrica. So, SAM-E is looking really good! However, it might take higher doses to get relief and it's so darn expensive because it should be blister packaged to hold it's potency. I'm on 400 mg daily and I take it in the morning along with my Thyroid meds on an empty stomach. I have less pain! It works!

Now, the topic of my post: I've been all over LDN (Low-Dose Naltrexone) treatment. It actually has so many positive effects, especially improving the immune system! This is a drug that is very inexpensive and has already been approved by the FDA in average doses of 100 MG for the treatment of Alcohol and Drug addiction. Even in these higher doses, there are very few dangerous side effects or toxic side effects. Very surprising and also very cost effective and low price. But, even though there are countless clinical studies proving it's effectiveness in LOW DOSES for other conditions, the drug manufacturers and FDA have not moved forward in approving the drug for these treatments. The low dose has a completely different response in the human body than the high dose. But it is proven to be very effective in the low-dose for Ovarian Cancer, Crohn's, Arthritis, Fibromyalgia, Parkinson's, MS and even Autism.

The low-dose levels for these treatments generally do not exceed 10 mg. Also, the average dose for Fibromyalgia pain is around 2-5 mg. And it seems to work pretty quickly! Please take a moment to review the Pub-Med abstracts I've linked for your review. Also, one of the national sites devoted to more education about this solution and effective medication that seems to work better in the body for pain, as well as boosting the immune system! Why has this not been embraced by the medical community? Do pharmaceuticals and doctors want to keep us sick? Sometimes, I wonder if Doctors get some sort of benefit from prescribing certain drugs, even knowing how horrible the side effects are? Look at what Dr. Mercola has to say! Then look at all the clinical documentation on PubMed alone! Lastly, the organization devoted to building awareness of this treatment that can help millions! Why, why why are these solutions not made widely available to those of us with this horrible disease as well as others?

low-dose naltrexone for the treatment of fibromyalgia - PubMed - NCBI

And here's on last PubMed abstract on the Role of Antidepressants for the treatment of Fibromyalgia Pain...

The role of antidepressants in the management of f... [CNS Drugs. 2012] - PubMed - NCBI
 
Thanks for the info, interesting reading. Sounds like a good idea but the opioid blocking concerns me as I am on opioids as part of my pain and IBS management.
That's probably why a lot of doctor's don't suggest it as opiods are often a main part of a medicinal arsenal for a person in chronic pain.
I'd still be very interested to see more studies on this though.
 
lynnnelson,
Welcome to the forum. You have provided some interesting information through your post and these gov websites. I think this will interest others on the forum. I hope that you will read through the forum topics the old and new and maybe find other ideas that will help your health conditions with more coping skills.

Please feel free to make yourself at home and join in on posting and asking questions if you have other concerns and posting answers to other members. Glad you found us. :)
 
Thanks so much for welcoming me to this Forum. Part of the reason why I wanted to post about Low Dose Naltrexone is because I wanted to see if anyone else has learned about it before going to my doctor. I do have a medical publication in PDF form to share. How do I share a PDF file? Thanks Lynn

lynnnelson,
Welcome to the forum. You have provided some interesting information through your post and these gov websites. I think this will interest others on the forum. I hope that you will read through the forum topics the old and new and maybe find other ideas that will help your health conditions with more coping skills.

Please feel free to make yourself at home and join in on posting and asking questions if you have other concerns and posting answers to other members. Glad you found us. :)
 
Lynn,
You have given the members plenty to think about and research on their own. I think it would be better if you can just share your thoughts about this medication in your own words drather then adding more links or publications. I am allowing the ones above as they are gov sites, but we need more told in personal experiences and thoughts on use and effects, so members can make more positive choices. :)
 
Hi, I was looking for some info for someone tentatively diagnosed with fibro in another state from me... I happened onto this forum site which seems very inviting and helpful. When I saw LDN mentioned, I had to register so I could pop in with my experience.

Several years ago I was believed to have MS. I did all kinds of research and learned then about the benefits and safety of LDN. I advocated hard for myself with my doctor and have been taking low dose naltrexone for several years now. It's given me my life back. I used to get up in the morning and stumble, leaning on the hallway walls for support, to the bathroom. By midafternoon I'd fall on the sofa for what I called a coma nap. Not restful, but practically unconscious for hours, waking with that paralysis that lingers. Not a way to live. I have five children, three grandchildren. With LDN, I was able to attend college ( half time, not full, but still! I used to not be able to move or think!) When my granddaughter was born, I was able to be there to help out. Really, I call LDN my miracle drug. I stay off opioids, but I am able to use tramadol plus acetaminophen while taking the LDN. It's helped me in other issues too. IBS is rare and mild now. I have RSD in one leg and I believe the LDN has kept that from progressing.

Also, I never get very sick when things go 'around' and my allergies are more mild and bearable.

I mentioned it to a friend whose dad has parkinson's and he's been helped by it.

Why doesn't it get prescribed more? It's an off label, well studied drug. There's no money in furthering its use since it's easily obtained as a generic. No big pharm co has any interest in studying a drug that won't make them money, and they're the ones who fund the studies... and who inform the docs of what drugs are avaulable for treating the various complaints docs come across. It's up to us: the patient/ consumer to learn about the possibilities and inform our doctors and take responsibility for our care.

Hope this helps. Believe me... I get nothing out of telling you my experiences, but the good feeling of sharing something I truly believe has helped me immensely!
 
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