Don't lose hope

[k737]

Hey all

i haven't posted in years but i find myself on the internet again researching... i came across a study that was conducted last summer (July 2021) that looked like they we're getting more answers for Fibro than there has been available over the years. i have emailed the researcher to see if he could provide any further insight on the condition and its management. My younger sister was diagnosed with Fibro as a child and it disappeared only to reappear randomly when she was 21, she has been dealing with it for the last 6/7 years now and she has every issue that someone with Fibromyalgia can have . After contracting Covid in Dec 2021, she has been worse than ever. Over the years we have found various methods to help to a degree but apart from moving to a warmer climate (which unfortunately, is not really feasible), here isn't much to help and Covid seems to have undone all the work that has been put in over the years. If anyone has any tips on how to counteract the Covid effects, please let me know. She has been throwing up (after eating) a lot more since Covid and the dentist told her yesterday that the enamel on her teeth has started to erode (you cannot regrow enamel), so she is even more upset!

Sorry, don't mean to rant, just came here to maybe give a little hope with this study i came across this morning as it gave me some hope... (at least people are starting to take it more seriously now!) the link for the study is... kcl.ac.uk/news/new-study-sh...

Perhaps if more people contact the researcher, he may look into it further? No harm in trying.

Stay strong, (i know its easier said than done, but remember your brain is a powerful thing) you can keep going, you got this! x

[desquinn Partner Volunteer FMAUK Trustee]

It has been posted in our orum numerous times since July and you can see the Guardian Article with my comments that still stand. theguardian.com/australia-n...

Also contacting the research will be counterproductive IMHO as David and the team will have to screen all the emails and reply. They are continuing their research and we will hear more when there is more.

Hoping to speak to Professor Eva Kosek from the Karolinska Institute soon about it and the future direction.

[k737 in reply to desquinn]

Thank you for the update (i thought it might go to the SPAM but i thought it was still worth a try)

[Hidden]

Arm and hammer enamel toothpaste restores erosion xx

[k737 in reply to Hidden]

Aww thank you! will definitely check this out x

She got given a prescription one from the dentist, i think its possibly a more potent one for extreme cases like hers x

[Hidden in reply to k737]

Bless her I have personally used it and its great xxx

[Londoner14 in reply to k737]

Due to having xerostomia - I have been prescribed colgate Duraphat toothpaste, see if doc has any info. Although a hosspital prescribed mine

[JayCeon]

Hi k - your sister's reaction to CoV may be similar to mine to the jabs, "MCAS" (and mast cells may be the connection, see research with links below...):

The severe long-term reactions to my 2 jabs pointed me first to histamine incl. intolerance, and because that doesn't really fit, to MCAS = mast cell activation syndrome, which fits, cos a low histamine diet, an antihistamine and loads of supps are helping me keep the symptoms down a bit more. Kind of allergic, but not short-term like days. Now after the 2nd jab the same 25 symptoms have been slowly building up over 2 weeks that I had after the first, and these are partly similar, but all either new or changed, in comparison to fibro. The diagnosis explains many oversensitivities I've always had all over my body which the fibro-diagnosis didn't quite help, which seems like an underlying immune condition triggered by the jabs re. CoV. Afrin, one of the docs researching & propagating the MCAS-diagnosis, believes long-COVID may have MCAS as a cause. I'm hesitant to believe everything he & the others say, as diagnosis & treatments are a bit complicated and vague (or rather pseudo-exact), but as long as no one can offer me anything better and it's helping, I don't care and am using it as a working hypothesis.

Maybe something for your sis too? Fibro is said to be a common co-morbidity or 'symptom' of MCAS.

The immune system / mast cells (a type of white blood cell) would be a connection between the "autoimmune" hypothesis as one of the possible causes of fibro and the MCAS theory. Especially as mast cells have been shown to be increased 3-fold in the skin of people with fibromyalgia (which may however be an unimportant result of it, not a cause).

A researcher in Boston USA, Theoharides, is regularly looking into and touting the supp luteolin as a mast cell stabilizer for both FM and MCAS, e.g. 2019, for instance for brain fog in MCAS, FM and other conditions. (I'm actually using luteolin myself - pretty expensive tho.)

As Banfi et al 2020 explain, the nervous system and inflammation is definitely connected, but we don't know how: So the central sensitization idea and the (auto)immune one may not be as far apart as it may seem?

desquinn : Des, any news on this you know of?

Mastrangelo et al 2018 on mast cells & cytokines pubmed.ncbi.nlm.nih.gov/296...

Theoharides et al 2019 on trying to inhibit mast cells in FM pubmed.ncbi.nlm.nih.gov/314...

Conti et al 2020 mast cells/cytokines pubmed.ncbi.nlm.nih.gov/318...

Banfi et al 2020 on T cells in FM pubmed.ncbi.nlm.nih.gov/320...

Theoharides et al 2021 on luteolin for long-COVID brain fog pubmed.ncbi.nlm.nih.gov/338...

[desquinn Partner Volunteer FMAUK Trustee in reply to JayCeon]

not really and doing less long reading of late due to my cataracts

[Wings-1]

This is very interesting and gives us all hope, although it seems it has been shared previously I'm new to this forum and feeling quite low at present as symptoms just seem to keep get worse no matter what I do so thank you for giving me hope