Advocates excited but say more research needed after latest fibromyalgia research say it could be autoimmune

I welcome the new research (any research really, please) that suggests fibromyalgia may be “an autoimmune response that increases the activity of pain-sensing nerves throughout the body.”

Researchers say the findings could potentially narrow down the search for more effective treatments for fibromyalgia (I re read that bit twice).

I welcome the news, really, but I wasn’t sure how I felt about it as a wave of different emotions washed over me. Relief, uncertainty, confusion, validation, anxiety….

Understand, sadly I’m so used to the dearth of research going into fibromyalgia and the lack of credibility given to it still by some members of the medical fraternity Click To Tweet

I did a double take when a friend sent me a link to the story covered by a credible UK newspaper website. Understand, sadly I’m so used to the dearth of research going into fibromyalgia and the lack of credibility given to it still by some members of the medical fraternity, that I couldn’t believe actual decent research was being done and published, and was now being covered by some mainstream media outlets. 

What did the research say?

The study was led by Dr David Andersson from the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, and published in the Journal of Clinical Investigation.

Researchers injected mice with antibodies from 44 people living with fibromyalgia and noted several of the ‘classic’ fibromyalgia symptoms in the animals, including muscle weakness, tenderness and increased sensitivity to pain and hot and cold. The mice that were injected with antibodies from healthy people showed no such symptoms.

Researchers concluded that fibromyalgia is a disease of the immune system, not a disease that originates in the brain’s pain pathways.

Despite fibromyalgia affecting 1 in 20 people in the UK (and worldwide) it remains vastly under-researched, patients still face frequent medical gaslighting from some parts of medical fraternity and struggle to find effective treatment to… Click To Tweet
My first reactions and thoughts

Relieved

Despite fibromyalgia affecting 1 in 20 people in the UK (and worldwide) it remains vastly under-researched, patients still face frequent medical gaslighting from some parts of medical fraternity and struggle to find effective treatment to help them live better quality lives. 

I wonder if that’s anything to do with it being a ‘woman’s condition’, and I say so because 80 percent of those affected by it, are women. Makes sense how widely unknown and under researched it is right? Less is known about conditions that affect more women because gender-based health inequalities are alive and well in the TwentyFirst century. 

I’m not sure how to feel about all of this…

Will the doctors listen to us now? Or do we still have to beg for painkillers when we’re reeling in pain? Does this provide more evidence for you skeptics that fibromyalgia is REAL? (The caps was not a typo, thanks).

Uncertain, anxious, upset

Is this research going to be carried forward? Can we trust the researchers to push it ahead? Previously fibromyalgia was thought to be caused in the brain. Some researchers said it was possibly related to cervical cord compression. Will we get more in-depth research until we find answers?

Already researchers are scrambling to find treatments and cures for long covid. I’ve read the news stories about people struggling with the fatigue and aches and pains. I empathise with them. But I’m also angry. Because how long have we with fibromyalgia been living substandard lives with chronic debilitating fatigue, pain and other symptoms, forced to find our own way because the medical world, Pharma industry and scientists don’t care about us. We’ve been living this reality for years with no hope.

You see? why I’m not really sure what to think?

Reactions from fibromyalgia advocates

‘Important but doesn’t give me hope’

Cynthia from The Disabled Diva

Cynthia Covert, a patient advocate who runs the blog The Disabled Diva isn’t hopeful about the new research.

“Being that there is no cure for my autoimmune disease, the thought that fibromyalgia is also one does not give me hope” says Cynthia.

“I feel all and any research is important and needed but it needs to lead to more than another big pharma medication that does little for the patient and comes with a ton of side effects. Because that is all I have seen come from research on my other illnesses. Declaring it an autoimmune disease won’t even give it more respect. I was diagnosed in 2003 and see more and more people suffering from the same illnesses that they keep researching, but nothing changes.”

‘Scared to get my hopes up…’

“It is potentially exciting as it could mean some more concrete answers and more legitimacy but I am too scared to get my hopes up Click To Tweet

Melissa Reynolds, Author and fibromyalgia blogger at Melissa VS Fibromyalgia is cautiously optimistic.

Melissa Reynolds from Melissa VS Fibromyalgia

“I don’t have a reaction till I see more research in this vein! There has been such a thing about it being from the central nervous system, hypothalamic dysfunction etc so I’d like more confirmation” says Melissa.

“It leads to only more questions. Like then how do people being treated for autoimmune disorders still have fibromyalgia? Does the AIP diet then really help? So is the central nervous system dysfunction the egg and the autoimmune the chicken?

“It is potentially exciting as it could mean some more concrete answers and more legitimacy but I am too scared to get my hopes up.”

Fingers and toes crossed, this research is the start of something good for those of us living with fibromyalgia.

How do you feel about this latest research into fibromyalgia? Does it give you hope? Do you think it will give the condition more validation and pave the way for more research?

Gentle Hugs x

4 Replies to “Advocates excited but say more research needed after latest fibromyalgia research say it could be autoimmune”

  1. Great post! I was happy to hear what I always thought was true, but I won’t get too excited until the medical profession finally recognizes fibromyalgia as a real disease.

  2. You make a good point in questioning whether we can trust researchers – not just them but the pharmaceutical industry, healthcare systems and governments. I developed fibromyalgia and chronic fatigue, along with other issues and autoimmune problems, after surgery, and it’s thought to all be down to an autoimmune response to a foreign body, in this case plastic. I can see fibro being autoimmune, at least in some cases. I know of others who’ve developed fibro and ME/CFS after a viral infection. It’ll certainly be interesting to see what comes from further research. Great post! xx

    1. Thanks so much Caz 🙏🏽 Agree with you and I think it’s important for us to discuss these things. I do wonder for a condition that’s so prevalent how it could be so overlooked. Let’s see what happens next xxx

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