Help please: I am new to this can... - The UK Mastocytos...

The UK Mastocytosis Support Group

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Help please

Lemrac66 profile image
10 Replies

I am new to this can anyone help

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Lemrac66 profile image
Lemrac66
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10 Replies
JayCeon profile image
JayCeon

Hi, and welcome... We're all different, and all complicated, but we can give you lots of ideas if you tell us a bit about your diagnostic process, symptoms, triggers and treatments.... For some basics you can look thru this forum and read thru websites like Lisa's mastattack or Beth O'Hara's mastcell360.

Lemrac66 profile image
Lemrac66 in reply to JayCeon

Hi not very good with all this modern stuffBut is this the open chat with everyone.

I was diagnosed in Feb with myloplastic syndrome.

But in April was changed to sm.

Waiting for appointment with guys hospital later this month.

My feet swell up and my legs itch .

My body aches .

Trying to learn my way around this site

Let's see if I get a reply thank you

JayCeon profile image
JayCeon in reply to Lemrac66

Hi again - yes, this is a "forum", so your thread is open to read and answer. As you haven't "locked" your post/thread to members, anyone on the internet can read it, only members can answer. I myself have MCAS, not SM.

Lemrac66 profile image
Lemrac66 in reply to JayCeon

Thank you What do you mean locked my thread.

Sorry to sound stupid .but I am old school to all this

JayCeon profile image
JayCeon

Not stupid at all - it's something many people don't realize.

You can choose for "anyone" to read your posts, which makes it more public, so that everyone on the internet can find it via search engines and read it and all the replies to it by members. That is what you have done.

Or you can "lock" it, which means that "Only Community Members" can read it, if you'd prefer it to be more private, so that people are encouraged to write more about their experiences.

If you want to change that, you can do so by clicking on "More" under your post. Then "editing" the post. And then clicking on and changing the option "Who can see my posts" (at the bottom, under the post). Then on "Edit response" to save that. A small padlock should appear at the top of the post to show it is "locked", so only visible to members of this "UK Mastocytosis Support Group".

Does that help?

Lemrac66 profile image
Lemrac66 in reply to JayCeon

Thank you very much get my daughter to help me over the week end.Hol long you had your illness for if you don't mind me asking

JayCeon profile image
JayCeon in reply to Lemrac66

The jabs triggered mine, but that's revealed that I've probably had it for decades, maybe since teens, maybe life-long. Just I could push thru before, now with fibro that's no longer possible, it's pulling me to a stop in my tracks.

An allergist in the 90s said I have no single allergy, but a fairly high overall titre, which "explained" many oversensitivities. And that they don't know much about this yet, but I could imagine it like a form of neurodermatitis inside and outside, and I'm on the right track by identifying my personal triggers.

I haven't had fibro long, and always had the feeling there's something else which fibro doesn't explain, but now I'm "satisfied", just hunting for the fatigue solution...

Lemrac66 profile image
Lemrac66 in reply to JayCeon

Sorry to trouble you.I not sure if I just had my first reaction

I just eaten some soup.

And within 5 minutes I became very hot.

I could not swallow or breath correctly.

Became very panicky.

Does it sound like a reaction to you.

Doctor phoning me shortly

Thank you

JayCeon profile image
JayCeon in reply to Lemrac66

No problem.

First thing is command any panicky thoughts to stop - then try breathing deeply into you belly. As this is (or was?) harder, just as much as you can, gently, softly, slowly, but if possible increasingly deep. Take a break, do things to cool down, light clothes, praps cold water on your skin.

Concentrate on relaxing, use any techniques you know.

Temperature is a fairly normal reaction to soup, and maybe the main problem is panicking. I can't say if this is a masto-reaction. Also that's very individual.

But soups can have loads of triggers in them. I can't eat them due to onion-like foods etc., spices and lots of processed stuff being in them.

Hope it calms down soon.

Lemrac66 profile image
Lemrac66 in reply to JayCeon

Thank you .Appears I did have a reaction.

Hospital said. It was not the big one thank god

Thank you for advising me .

Stay safe thank you again

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