a question

[TabataRossa]

Hello, I wanted to have an opinion from you all on what I read in this link.

It seems to me a revolutionary discovery. What do you think?

osservatoriomalattierare.it...

[Dizzytwo]

Good morning I am sorry but it is in Italian I believe and I am not sure how many of our members read Italian. This is a UK based forum so I'm unable to read what you have linked to xx

Momo

[TabataRossa in reply to Dizzytwo]

hello, help yourself with google translate. Copy the link in google translate and translate the page for you

[worried4me5]

Hi,

I was given the option to translate into English when I went to the link. I have pasted it below. It looks interesting:

Fibromyalgia: Genomic study highlights an autoimmune component

Author: Enrico Orzes 07 August 2020

DNA

An Italian research sheds light on the origin of the disease, establishing the possibility of new therapeutic approaches

A pain spread throughout the body, then cramps and muscle fatigue and the inability to enjoy a restful sleep; perhaps long medical visits and many tests without a precise answer, until, in the end, the diagnosis seems even a hoax: fibromyalgia , that pathology with unknown causes that for many years has been classified as a psycho-somatic disorder and, therefore, cured only with antidepressants. Today, the situation seems destined to change also thanks to the research work coordinated by prof. Claudio Lunardi , of the Department of Medicine of the University of Verona, and by prof. Antonio Puccetti , of the Department of Experimental Medicine of the University of Genoa, whomade it possible to ascertain the existence of autoimmune factors underlying this disease .

The article, published in the pages of the Journal of Clinical Medicine , is signed by Prof. Marzia Dolcino , of the University of Verona, and has the merit of investigating the molecular pathways that underlie the origin of fibromyalgia from a modern perspective, making use of a whole genome investigation technique and returning to the Italian researchers a complete and accurate picture of the disease. " The innovation of our work lies in the fact that it represents the first experimental demonstration that fibromyalgia is actually a disease that has autoimmune aspects ", explains prof. Puccetti. “There was already some indirect evidence that suggested a phenomenon of this type: for example, the fact that fibromyalgia prefers female sex, or that often in other autoimmune syndromes there is a fibromyalgia component; or that autoantibodies such as those against early markers of Sjogren's syndrome or autoimmune thyroid disease have been identified in variable percentages of patients . However, until now, the autoimmune basis of fibromyalgia has never been established ”.

In fact, this study radically changes the cards on the table, because in any medical dictionary, under the heading "treatment for fibromyalgia" there are various options, which include anti-inflammatory drugs, sedatives and even antidepressants, since the inability to define the exact origin of the condition, and the lack of reliable diagnostic tests, have helped move fibromyalgia into the larger group of psychosomatic disorders. " For some years, we have begun to understand that this is a complex syndrome , with symptoms that produce dysautonomia, ie alterations of the autonomic nervous system, and therefore causes memory lapses, confusion and dizziness," continues Puccetti. “Beyond that, fibromyalgia involves various organs and systems, including the gastrointestinal, endocrine and urinary systems, and can also be linked to sleep disorders ".

Currently, there is still no laboratory test considered the gold standard for diagnosing fibromyalgia , which is therefore done on the basis of careful clinical observation . For this reason, doctors need to know the characteristics of the disease well, not to underestimate the consequences. "If a specialist is faced with an important pain syndrome, with widespread pain and involving both joint and muscle, often linked to alterations in the sleep-wake rhythm, with the presence of digestive problems or gluten intolerance, urinary disorders or genital and dryness of the mouth and eyes, but without modification of the specific indexes of inflammation, should suspect that he is facing fibromyalgia ”, explains prof. Puccetti.

In this sense, the work carried out by Italian researchers takes on a strong clinical relevance as well, because it confirms a strong autoimmune component in the origin of the disease. "Using advanced gene expression techniques, we analyzed more than 540 thousand known genes, thus obtaining a complete map of the alterations present in the fibromyalgia picture”, Specifies Puccetti. “Furthermore, we were able to study a substantial component that is the non-coding genome, the one that is not transcribed into proteins, looking at the epigenetics that regulates the development of autoimmune and neoplastic diseases. We observed an increased expression of genes linked to the perception of pain and to other aspects of the disease linked to the emotional component, therefore to states of anxiety or depression and alterations in the circadian rhythm ”.

This method of investigation can also be applied to other diseases whose pathogenesis is not fully defined, because only by shedding light on the mechanisms that give rise to a given condition is it possible to hope to understand how to deal with it. In the case of fibromyalgia, the discovery of an autoimmune basis suggests a change of therapeutic approach , inviting the use of targeted drugs or the development of innovative and effective biological formulations, especially in the most serious cases. " At the moment, the therapy is mainly based on painkillers and rehabilitative physiotherapy - underlines Puccetti - but fibromyalgia is a complex disease, for which we must also consider the possible treatment with steroid drugs or immunosuppressants., just like we do with systemic autoimmune diseases. It should also be considered whether it is a pure fibromyalgia syndrome or associated with other systemic autoimmune forms, such as Sjogren's syndrome, lupus , or rheumatoid arthritis . In general, however, it is not enough to prescribe a painkiller to patients - concludes the expert - and thanks to this study we have understood that different drugs are needed, including immunosuppressants, capable of changing the course of the disease ".

Hope that's okay to do this..

Ang

[TabataRossa in reply to worried4me5]

thanks, it looks very interesting

[Hazel_Angelstar Administrator FMA UK Staff]

I'll be honest, my brain couldn't make much sense of this today.

However, it looks like this is one study/theory and would need to be replicated/peer reviewed to confirm their findings before it is anything more than just another theory

[TabataRossa in reply to Hazel_Angelstar]

Sounds very interesting to me. I was once seen by a doctor who specializes in immulogy for a calcified thyroid cyst. He told me not to worry because in my case, a fibromyalgia and spasmophiliac patient, it was completely normal. For this doctor, fibromyalgia is an autoimmune disease. It is not strange?

[desquinn Partner Volunteer FMAUK Trustee]

Original research paper can be found here in English - mdpi.com/2077-0383/9/6/1814...

Sample group is quite small with 60 in total and as it says it needs to be replicated with external cohort. Also I wonder if the med washout period of 2 weeks is enough. But all research is good and adds to the knowledge base.

[TabataRossa in reply to desquinn]

Thanks for your clarification.

[Cat00]

What would worry me would be having to take steroids. My mother has Polymyalgia which is considered to be autoimmune and she has been on steroids for a few years. The pain has not gone away and the doctors says the steroids are so bad for her so she is constantly stressed. They keep hoping her body will "stand down" so they can take her off the steroids but every time they do she gets worse. It's a permanent catch 22. But I suppose there many different steroids out there so it might be very different for fibro?

[desquinn Partner Volunteer FMAUK Trustee in reply to Cat00]

at the moment from what I understand people with fibro do not tend to respond to steroids.

[Cat00 in reply to desquinn]

I didnt know they'd tried them? I suppose a lot of people with fibro also have other conditions that might require steroids so that could be construed as a test in itself. I have chronic migraines and I have just been put on a CGRP injection which they suspect might have an impact on my fibro too but it's too early to tell yet.

[desquinn Partner Volunteer FMAUK Trustee in reply to Cat00]

they tend not to and its normally used for polymyalgia or when they are going trhough diagnosis process or have other things going on.

[SammyJJ in reply to Cat00]

What is CGRP injection? I have chronic migraine with fibromyalgia, the migraine is more debilitating than the fibromyalgia.

[desquinn Partner Volunteer FMAUK Trustee in reply to SammyJJ]

if you have a look here there is some information on CGRP. There is more and more work towards prevention which is great for chronic migraine sufferers. It also great that some of the different pain conditions are feeding into the larger pain puzzle.

migrainetrust.org/living-wi...

[Cat00 in reply to SammyJJ]

It stands for Calcitonin Gene-Related Peptide, it is an antagonist neuropeptide implicated in the migraine pain pathway. You inject yourself once a month. To qualify you need to have tried 3 preventative medicines first and ideally you need to be someone that responds to triptans. You also need to be a chronic migraineur that is someone who has migraines on at least 15 days of each month for the NHS anyway.

[SammyJJ in reply to Cat00]

Thank you thats really useful information. I've been having chronic migraines since the fibromyalgia started over ten years or so ago. I cannot find the cause of migraines, ( having tried many diets and treatments) Is there a common link between fibromyalgia and migraine? I always thought they were two separate conditions but maybe not!

[Cat00 in reply to SammyJJ]

They are associated, I used to think the chronic pain of migraine and insomnia triggered the fibro but now I'm more inclined to think I always had both of them since childhood. I would have thought it would bolster your fibro diagnosis because like IBS and insomnia they are frequently found together.

I had about 13 different drugs to try and treat the migraine, then botox for 6 years and now this new drug the CGRP. So far so good though havent had a really bad migraine since starting it (7 weeks ago) unfortunately in a lot pain from my other many conditions at the moment so I'm a bit distracted but if it carries on like this it will be a miracle!

[TabataRossa in reply to Cat00]

Hi, I can understand you, it's tough.

I started with a headache at 9, I'm 58 today.

I can understand, don't you think?

[Cat00 in reply to TabataRossa]

Yes I've had them from age of 4 gradually got worse over the years, I'm 43 now.....

[TabataRossa in reply to Cat00]

Hi, I don't know, I don't know anyone who takes these drugs

[Romcom]

Hi I was really encouraged to read this article. As far as I am concerned the more studies and research the better. From a personal perspective I am very aware of the close connections with other conditions and diseases for example as well as fibromyalgia I have undifferentiated autoimmune connective tissue disease, thyroid disease and raynauds. The question on my lips is always why?

Thanks so much for finding and sharing this article let’s hope the research keeps on coming 🙏

[TabataRossa in reply to Romcom]

Hi, I agree with you, the research must continue, little is always known about this disease and they are always conflicting things but this study convinces me. I know many people with fibro who have autoimmune diseases

[Sandcastle27 in reply to Romcom]

Hi, I have undifferentiated connective tissue disorder too, and raynauds, and also Sjogrens. Why do so many of us have autoimmune diseases too? I I have always felt there was a connection. That said, the fibromyalgia component has never seemed to respond to the immune suppressant medication.

[penny]

If there is an autoimmune link then that would explain treatment with vitamin D.

[TabataRossa in reply to penny]

Hello indeed

[Midori]

I find the article very hopeful; I would love to see the study expanded.

Cheers Midori

[TabataRossa in reply to Midori]

Hello, idem

[Catatvet05]

Has any of your gp or doctors at hospitals explained or mentioned about any investigation of fibromyalgia? Whether anything has approved with regards to antibodies or diagnosis? I wonder, because it seems people who attend the forums do not have doctors to support this nor IBS? Really do hope prognosis progresses so people who are suffering with Fibromyalgia symptoms can led a more comfortable life. 🙏🏼