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Why do I have “fibromyalgia “?

Posted by jeannesf1 @jeannesf1, Apr 22 7:32am

Ive read and heard many times that fibromyalgia is caused by brain overreacting to pain, why do I have this problem with my brain? Has research gone beyond this question? Is it being researched at all? Lifestyle? Born with it? Physical or emotional trauma?

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

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lesligirl02 | @lesligirl02 | May 10 7:32am
In reply to @winniemercedes "I've always understood fibro to be another immune system disorder. Like lupus (which attacks the body's..." + (show)
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I've always understood fibro to be another immune system disorder. Like lupus (which attacks the body's organs without "reason"), fibro sends pain signals that are not in response to an actual injury. That makes sense when you take into account that stress makes fibro worse - your body is already in an elevated state of anxious response to stressful stimuli. It's almost like the fibro is along for the ride. I noticed that once I left my stressful marriage and job, my fibro is MUCH improved. It's not gone, but now the triggers seem to be more weather-related. So the "why" of fibromyalgia is that your body is on a hair trigger in its response to any kind of threat, whether a bad marriage or a bad boss or something else. I think it makes sense that so many of us feel better once we are able to embrace quiet and stress reduction. Obviously, I am speaking from my personal experience and I'm sure there are many who continue to suffer even with stress reduction. Hugs and support and wishes for relief.

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@winniemercedes

LDN is healing to the immune system; maybe read up on it and see what you think?

I think you might find these LDN guides helpful and insightful to read. They explain how LDN is healing to the immune system, which incidentally was destroyed for many with the covid vaccine and/or covid itself. I have learned much from the LDN Research Trust sight which has helped me in talking with my doctor's about it and it is helping me in multiple ways.

Shared files

LDN 2026 patient guide (LDN-2026-patient-guide.pdf)

LDN 2026_Prescriber_Guide (LDN-2026_Prescriber_Guide.pdf)

LDN 2026_Mental_Health_Guide (LDN-2026_Mental_Health_Guide.pdf)

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jeannesf1 | @jeannesf1 | May 10 1:13pm
In reply to @lesligirl02 "@winniemercedes LDN is healing to the immune system; maybe read up on it and see what..." + (show)
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@winniemercedes

LDN is healing to the immune system; maybe read up on it and see what you think?

I think you might find these LDN guides helpful and insightful to read. They explain how LDN is healing to the immune system, which incidentally was destroyed for many with the covid vaccine and/or covid itself. I have learned much from the LDN Research Trust sight which has helped me in talking with my doctor's about it and it is helping me in multiple ways.

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@lesligirl02 I had not seen these guides before. Thank you so much.

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lesligirl02 | @lesligirl02 | May 10 4:45pm

My pleasure; they have been very helpful to me.

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bealillie | @bealillie | May 12 1:24am
In reply to @jeannesf1 "Oh yes. I have been in chronic high alert stress mode since a child in abusive..." + (show)
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Oh yes. I have been in chronic high alert stress mode since a child in abusive situation. Then other traumas throughout life. I don’t know any other way to be unfortunately. When I was younger, raising 2 boys on my own with a high stress job my doctor would say. I don’t know how you do it. You thrive on stress. It drives you. Well I’ve always thought stress had alot to do with this condition. I stopped taking the fibromyalgia meds because of side affects. But they did help. Heating pad, biofreeze, Advil are my best friends. HOWEVER, I recently started taking Low dose naltrexone and feel so much better! Please read the feeds on the LDN (low dose naltrexone) in this group. It has been life changing for a lot of us. Love and peace.

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@jeannesf1
What dosage of LDN are you on having a hard time figuring out what the dosage that works for me I feel like it doesn't really help

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Vanessa Valentine | @luvpets15 | May 12 9:57am

@jeannesf1 - I was on LDN for a month, and it didn't seem to help me, either.

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jeannesf1 | @jeannesf1 | May 12 10:23am
In reply to @bealillie "@jeannesf1 What dosage of LDN are you on having a hard time figuring out what the..." + (show)
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@jeannesf1
What dosage of LDN are you on having a hard time figuring out what the dosage that works for me I feel like it doesn't really help

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@bealillie I felt a better response to LDN when I asked doctor if we could go higher and am currently taking 6mg. I also changed to taking it in the morning instead of night and am sleeping better. I saw on this group someone taking half dose in morning and half at night, which I was going to try also.

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jeannesf1 | @jeannesf1 | May 12 10:31am
In reply to @luvpets15 "@jeannesf1 - I was on LDN for a month, and it didn't seem to help me,..." + (show)
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@jeannesf1 - I was on LDN for a month, and it didn't seem to help me, either.

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@luvpets15 I didn’t notice a difference either until after 5 months I asked my doctor to up the dose to 6mg.

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leoandbear | @leoandbear | May 12 11:12am
In reply to @bealillie "@jeannesf1 What dosage of LDN are you on having a hard time figuring out what the..." + (show)
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@jeannesf1
What dosage of LDN are you on having a hard time figuring out what the dosage that works for me I feel like it doesn't really help

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@bealillie
Hey there! I am on 4.5. I seem to have a high drug tolerance so in all my meds I end up taking the highest dosage. Unfortunately only one medication does not usually help all symptoms. So I look at it as this helps 40%, and the LDN helps 15% etc. so I just think of it as anything that helps a good percentage, to try.

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daisy17 | @daisy17 | May 12 11:21am
In reply to @luvpets15 "@jeannesf1 - I was on LDN for a month, and it didn't seem to help me,..." + (show)
Profile picture for Vanessa Valentine @luvpets15

@jeannesf1 - I was on LDN for a month, and it didn't seem to help me, either.

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@luvpets15 You have to take LDN for more than a month. It took me a couple months to taper up from a low starting dose to the 4.5mg/day maintenance dose. Then it can take 1-2 months to notice improvement. I slowly improved over a 6-month time period.

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jeannesf1 | @jeannesf1 | May 12 11:53am
In reply to @leoandbear "@bealillie Hey there! I am on 4.5. I seem to have a high drug tolerance so..." + (show)
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@bealillie
Hey there! I am on 4.5. I seem to have a high drug tolerance so in all my meds I end up taking the highest dosage. Unfortunately only one medication does not usually help all symptoms. So I look at it as this helps 40%, and the LDN helps 15% etc. so I just think of it as anything that helps a good percentage, to try.

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@leoandbear yes! LDN is not a miracle cure. However I am no longer taking Cymbalta or gabapentin, that I didn’t realize were affecting me in regards to their side effects. The hip, upper thigh side pain that was the worse and difficult to explain (not bone, not muscular, skin, maybe nerve?), was it sharp, dull ache (?) drove me crazy and was relentless, is gone. I do have lower back pain only and treat with mostly heating pad, at worse I’ll add Biofreeze or ibuprofen but not often. My mood and energy are much better!

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