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A MyFibroTeam Member asked a question 💭
Scottsdale, AZ

Why?!?!?!?!? Do they know our pain is like being in a torture room?!?!? I can find 4 books that are 1 star quality come on!!!!!! These doctors can spot it but they dont really know what is.

April 20, 2015
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Answer Summary

Members shared deep frustration over the lack of understanding and recognition of fibromyalgia pain by the medical community, with several... Read more

Members shared deep frustration over the lack of understanding and recognition of fibromyalgia pain by the medical community, with several describing emerging research that offers hope, including studies on reduced nerve density in skin, elevated pain-signaling substances in the spinal cord, and mitochondrial dysfunction that may explain widespread symptoms. Many community members described their personal medication journeys, from traditional prescriptions like Cymbalta and Lyrica to exploring alternative options such as nettle tea and medical marijuana, with mixed results and ongoing experimentation to find what works for each individual. A recurring theme was the validation that comes from shared experience, the exhaustion of navigating treatment without clear answers, and cautious optimism that better research and recognition could finally bring relief and legitimacy to their daily struggle.

A MyFibroTeam Member

Recently a great study came out (done in Spain) showing that the heart of it all may be a mitochondrial dysfunction. The mitochondria are in our cells, and impact everything from energy availability to inflammation. I have just enough medical training to be able to make some sense of the study, and I know I am feeling really excited! The mitochondria would impact everything listed by @A MyFibroTeam Member and more from our awful immune systems to some of the other strange disorders that cluster around fibro.

I really feel like there is a new day coming. Even if they don't find a cure right away, a definitive understanding of the cause and process of the disease could just change it all as far as recognition and support from the medical community.

I don't know if we can post links here, but here is a link to a March summary of the study. http://www.cortjohnson.org/blog/2015/03/04/is-f...

April 21, 2015
A MyFibroTeam Member

I've heard a couple explanations, none of which are proven but both of which give me a certain amount of solace.

The first was an article in The Scientific American Mind, specifically about fibromyalgia. What they did was biopsy sections of skin and look at the nerves in both healthy people and people with fibro. The people with fibro had significantly fewer nerves per square inch of skin. The theory is that because there fewer nerves, the nerves work overtime in order to compensate, leaving fibromyalgia sufferers actually "feeling" more.
Some issues with this study are 1. they only looked at skin - they aren't sure if this is a system wide phenomenon. 2. they looked at dead tissue (it was removed from the patient) and so there is no proof that the nerves actually work harder or more frequently.

The second was mentioned to me by my psychologist and I have not been able to track it down (well I haven't gotten around to looking in all honesty). She said that in the spinal chord there is a substance that mitigates pain. (Call it substance p) In experiments where they tap the spine and extract p from both healthy and fibromyalgia patients, those with fibro had, on average, THREE (3) times the amount of p as a healthy person. Essentially any pain we experience is about three times as painful as the average person.

That really helped me feel like a boss on the days and times that I pushed through for something that needed to be done.

April 21, 2015
A MyFibroTeam Member

@A MyFibroTeam Member I read your post and you mentioned a need for a more herbal approach. I agree. I'm on so many meds an herbal relief would be nice. I saw a post on here about nettle tea. You have up to three cups a day and this lady swears by it. Once she runs out she definitely feels the effects that the tea does. I recently purchased it online and am waiting yet for it to arrive. I purchased it from steeped tea.com and it wasn't too expensive. Like I said this lady on the site swears by it. Enough for me to try it myself.

April 26, 2015
A MyFibroTeam Member

You can try things yourself at home try cooking it with cocunut oil to dilute it but they have some growing to do in the way of maturing the types for different types of people.

May 2, 2015
A MyFibroTeam Member

I tried medical flower or buds, leaves, MJ I tried their complementary cookie and hated the high so much I cried for 12 straight hours and locked myself in bed. It was horrible. Its kind of poisoius for my body I noticed. It depends on who you buy from you may have some terrible events before you find just the right one.

May 2, 2015

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