Hi malissa ,
The symptoms of fibromyalgia are in many ways similar to MCAS / MCAD . It is a diagnosis of exclusion . So all other rhumatology , neurological and immuno causes need to be excluded for it to be a true diagnosis .
In my case I think I have a little fibro and angiodeama . My cause for angiodeama is not established yet . All autoimmune causes have been excluded . I may have a new type of heridatory angiodeama . have you been tested for this ???
So my cause for my swelling may be histamine or type 3 HAE . Ill know more from my immuno next week .
I feel I have some fibro as I have had neck pains for many years which were treated happily with a massage and a night out
So pure stress for me .
I was dignosed with fibro after 6 months of illness 2 days after my first shock . i was happily full of steriods and adrenaline so could move better than I had been with less pain that day .
2 weeks later my abdominal pain was very bad , my GP listened and reffered me on , so 2 weeks on he wasn't convinced . He was already suspecting "one of those funny syndromes where you react to alcohol " with my first shock .?? mastocytosis / mcas . But unf I had to move suddenly due to domestic violence and I had to leave his acre . A real set back for me in real terms .
I had a ( hospital )doc say all my symptoms were anxiety . I was a little upset that day because they had ordered a psych review without my consent . because they couldn't find out why i was shaking and being sick . well they did - gastritis .
I had been upset the week before on the first ward as i was left 2 hrs for anti sickness . The sister , when i told her my reasons , apologised but I didn't get an apology - anyway all in the past but so unfair and un necessary .
Now I have other explinations for most of my symptoms .
frequent urination - high BP , diabetes and prostoglandins .
pain = swelling ,
poor temp control - hot - histamine
retching - gastritis and bowel spasms
shaking - muscle spasms and dehydration - due to untreated retching
So I pace myself as I am told to do and have cool baths to help my back pain . No fibro drugs helped .
My fibro friends have questioned the diagnosis as well as i didnt fit with them even in how my pain behaves
So I remain open minded . On reading DR Blancos work I wandered if many fibro patients are undiagnosed mastocyctosis / so that is why they have extra mast cells . But that's me tipping it on its head . With early work like Dr Blanco's it shows things , but it really creates more questions to research
Where are you in the getting a diagnosis process ???
If you do have masto or mcas it is not beyond that your family also have it . many of us have strong family histories , the research just needs to catch up with us .
I had a very stressful 6 months before my illness came out , culminating in taking a job in a well known fast food outlet for money as my sister was gambling . I do beleive this contributed to my illness coming out .
I presented with sweats , fatigue and temperture .
I had antibiotics and had pain in my liver and more sweats and shortness of breath on minimal exertion . I had a mild very mild chest infection . but i was very short of breath , now with knowledge , i suspect it was pollen ( summer ) and lots of kittens ( 11 inc big cats sleeping in my room ), personal care products ( short of breath in shower ) and bathroom cleaner which contributed to this first illness .
In the months before I had had I migraine which took me to ED (jan ) abdo bloating and retching ( may ) . All mysterious malladies .
I tolerated stress well before this . i was nursing for 15 yrs full time . I manged my stress as I said with hair dos , nights out and massages
My first epi pen experience was in Dec 08 , I had rose wine . flushed , red , had fast heart beat , dizzy and self presented at ED . i should ahve called an ambulance . But i got a lift . They saw me , got me into the resusitation room and treated me . I was very ill . BUT the treatment worked
I have had many experiences since then , shock , pain , operations , my bowel being so ill i was reacting to everything
So please ask away .
Mono can make your immune system go bonkers without any true allergies where you have high IGE for that thing - mine are cats , house dust and grass pollen . Any physical ( operation , infection etc ) can un mask mast cell disease and angiodeama from other sources as all swelling is not necesserily mast cell based
hugs
Josie