https://www.histaminintoleranz.ch/en/symptoms.html

[poodlebell]

this is a very good article and has all the symptoms of fibro. It is saying about high histamine and wondering if anyone has taken antihistamines. I have problems with all meds so reluctant to try but if anyone has taken them and got relief I would then give it a go, thanks

[desquinn Partner Volunteer FMAUK Trustee]

It does not align with fibro and if it was present then it would be able to detect histamines.

[poodlebell in reply to desquinn]

how do you test to see if you have high histamine please

[desquinn Partner Volunteer FMAUK Trustee in reply to poodlebell]

healthline.com/health/hista...

[poodlebell in reply to desquinn]

Thank you

[JayCeon]

Hi poodlebell,

histamine intolerance (HIT) does have some symptoms in common with fibro, but they seem much more allergy type and are much more closely related to histamine triggers in food, so there is not that much overlap. If you suspect it, an allergist can check that.

However MCAS, mast cell activation syndrome, also has a histamine component, but the mast cells as important part of the immune system are strongly triggered by quite a variety of foods containing things - often similar to histamine - but also environmental triggers, stress, even positive stress etc. The connection here can be much closer to fibro, fibro is often mentioned by researchers as possible co-morbidity or 'part' of MCAS. However differences to fibro regarding triggers like smells, food, even mould or med fillers etc. are for instance burning sensations after such a trigger, even up to regular anaphylactic shocks.

Similarly to fibro unfortunately it is very complicated to diagnose, 2-3 sets of criteria have only recently been developed, it isn't recognized by most insurances, and needs specializing doctors, in that case usually allergists. But there is a lot of information, sites, videos and people on forums sharing their experiences and the research. There is a mast cell forum here on healthunlocked too, although not very active at the moment.

The Swiss site, SIGHI, you got the link from has a good list which helps people worldwide with MCAS as well as HIT find what foods may be causing problems, cos the 100s of lists there are are all different due to the complexity and it not being just due to histamine itself.

As you say you don't tolerate meds and are asking if you should try an antihistamine... Not tolerating meds might be a clue for having MCAS, esp. if you have quite a lot of other strange intolerances and allergy type symptoms. I know people with fibro suspecting MCAS who have simply tried an antihistamine, but I'd definitely recommend finding an allergist first.

My MCAS: In my case I've always been oversensitive/intolerant to many foods, meds, anything on my skin and somehow fibro didn't by far explain it all. Then my 2 jabs set off such severe new symptoms incl. burning skin, sinuses etc. that I can't move much for fatigue, physical activities down to a few half hours per day (but I can still work / post online a lot). For these jab effects it was actually the fibro/CFS site healthrising that pointed me to MCAS, with advice etc. and I quickly realized the recommendations of those experts were helping, and it didn't take long to be pretty sure of the diagnosis and get that confirmed surprisingly by my own allergist. We decided to try an antihistamine (2nd generation, so less drowsing) and that did take the immediate brunt off the 2nd jab, another part of the puzzle. And I tolerated it perfectly well, altho most meds and some supps are a problem. (Altho I wasn't recovered from the 1st after 2 months, and still haven't even half recovered from the 2nd after 8 months, but with not protection the 3rd is looming ahead.) My MCAS treatments consist mainly of supps and doubly careful elimination diet.

[poodlebell]

hi thank you, my doctor is not very helpful, I was diagnosed with chronic fatigue which is so similar to fibro. I was coping til I had a spill of varnish and the strong smell set off any smells making me have the symptoms of multiple chemical sensitivity. As I have the cfs and now the smells I wondered if the two were related

[JayCeon in reply to poodlebell]

Ah, so you haven't been diagnosed with FM, but with CFS.... - so that'd mean your main symptoms have more to do with fatigue than with pain(?)

FM and CFS are more similar to one another than MCS it to FM, but your suspicion seems right, CFS is likely "related" to MCS, whether that means co-morbidity or one is mimicking the other will be controversial, esp. as MCS is itself controversial: quitchronicfatigue.com/mult...

Going by only the 2 symptoms you've mentioned (med intolerance and smell intolerance) MCAS still might be a possibility, as well as MCS. Generally some people with fibro can be smell intolerant too, but yours being triggered in this way does sound a bit like MCS or MCAS. Just that 2 symptoms are by far not enough for either of these to be diagnosed.

It's not going to be an easy job finding a doc to help with either MCS or MCAS, probably someone aside of the mainstream and naturopath, and will probably not be covered by insurance. So whether or not it is one of those, you may not have much of a choice than to self-care, try to find and eliminate your triggers, 'research' as much help as you can incl. all the many supps (me: 35+) that may help reduce symptoms...

Still not sure yet if you're jumping the gun, as you've only described 2 symptom areas....?

[poodlebell in reply to JayCeon]

sorry, it affects my nose, mouth feels like no skin on it, lips so dry, throat gets sore, headache, dizziness, fatigue and aching in my legs is the worst but aches elsewhere too. I get itchy, especially my scalp, when i was diagnosed with CFS I did not have the problem with smells etc just taking meds, thank you

[JayCeon in reply to poodlebell]

Ah, lots sounds like me / my MCAS/jab symptoms ... - with nose do you mean things like postnasal drip, congestion/stuffy, burning sinuses?

[poodlebell in reply to JayCeon]

I get a drip in the right nostril and when its bad the right nostril fills up and I cant breath through it, I think that this is MCS, thank you

[JayCeon in reply to poodlebell]

So you think it's MCS, not MCAS? Why's that?

Ah, always the same nostril, interesting! Mine alternate regularly at night (unless from a big food trigger). Apart from things like airing - dry fresh air is better than humidity, as recent studies have shown, I use various acupressure points for relief. Cos minty oils get my stomach growling and burning.

This is my favourite one with 4 different points (generally I find Mandell's ideas help me a lot for all kinds of things), but it can change what works. Doesn't necessarily work immediately, but if I then lie to the opposite side it often does, or at least is better:

youtu.be/uxsM_wnpfQM(Not working as expected?)

[Gaballetto]

Yes, I have an inability to tolerate most meds (which result in 'flu symptoms), moulds, dusts, grass clippings etc, and also get a sore throat, nasal congestion, burning eyes, fatigue and a racing heart after food - if it was possible I wouldn't eat at all, but as one has to eat something every day I try to restrict my meals to the later part of the day so I at least have mornings when I can rely on feeling relatively well and being able to accomplish things. I also have learnt that meals made up of fresh fruit and vegatables, with nothing processed, are the best way to reduce histamine issues.

On the antihistamine question, I have found relief with fexofenadine when I am suffering strong histamine related symptoms like sore eyes and racing heart. It seems that I can tolerate these tablets, with generic panadol being the only other ones. The downside is that in UK, the stronger formulation of fexofenadine is prescription only (although the upside to that is that, being over 60, I get my scripts free for now).

I was hesitant and nervous taking the initial doses of fexofenadine, after a nurse at my menopause clinic suggested that histamine intolerance may be why I have struggled to find HRT formulations I can take without side effects. I still reserve them for when the 'damage is done', and prefer to work on watching what I consume and come in contact with

[JayCeon in reply to Gaballetto]

Hi -

and what do you think about your symptoms being MCAS rather than HIT? I.e. if you avoid histamine are you OK or is there a lot more going on?

Like you I eat mainly fresh (and raw) veggies, but hardly any fruit except apples and berries (esp. no citrus), a tiny bit of dried ones like figs. For breakfast a gluten free berry muesli with almond milk and a few nuts when they're OK. And like you I keep my antihistamine (rupatadine) to before and after the jabs, to take the brunt, rather than constantly.

[poodlebell in reply to JayCeon]

I thought in the past it was just histamine, but then I had the covid vaccination and went to the dentist and from then we had a tin of varnish leak and it was such a strong smell and it affected me so badly, doctor said it was a chemical problem and it would get better but instead it has got worse, and its nearly everything on like bleach, washing powder, perfume, that makes me so ill. So think that its probably a combination of both. thanks

[JayCeon in reply to poodlebell]

I just had skin and gut oversensitivities to food and meds, until the jabs - those 28 symptoms were telling....

[poodlebell in reply to Gaballetto]

Hi, I have very similar symptoms to you and lots of foods affect me, too many to mention. We can buy fexofenadine and I have read up on this and am trying to bring myself to try it, I did try cutting Clarytin in half and it made me worse but I will try the fexofenadine, just got to get over having a tooth out, seems everything is a downer for me at the moment, thank you

[Gaballetto]

It's definitely worth trying fexofenadine. I have been helped by it on occasion. Clarity and others like that just send me to bed because I get so drowsy

[JayCeon in reply to Gaballetto]

Yeah, zombifying me is what I feared too, cos I get that from most things, like CBD and melatonin even in tiniest amounts, but rupatadine was fairly OK for me, and taking it in the evenings also made it more tolerable. But as these are all 2nd gen. H1 they're all much less zombifying than 1st gen. H1 and I guess we have to switch till one's OK for us, from what I've heard once again we're all different in that.

[poodlebell in reply to Gaballetto]

thank you it’s reassuring to know x

[Jaxie64]

Hi poodlebell

I am on a small dose of antihistamines 3 times daily because I am allergic to Gabapentin.

[poodlebell]

which antihistamine are you taking, and how much please