I had various strange symptoms when I was young including extreme urticaria in sunlight and swelling of the lips and tingling when I had hot drinks. Oddly both these fizzled out in my 20s though I am still not very well in hot weather. I have an extreme wasp allergy and having been de-sensitized and had it fail, I almost died twice from anaphylaxis after stings and now carry epipen of course. My skins reacts to several other things including Christmas trees!
But it was my general malaise which made my seek an immunologist some 15 years ago… stomach pains, sneezing and streaming eyes, feeling unwell and faint in bouts, aching joints and painful joints…I managed to hit on the right one straight away – referred by the specialist who runs the wasp and bee sting clinic – and he diagnosed Mastocytosis – I had also had a series of bouts of cystitis and fortunately the specialist for those picked up that it was all connected with mast cells. I was put on a regime of Clarityn [loratadine]… but sadly the consultant I was under died.
We then moved to another county and I came under a GP who dismissed the whole thing apart from the wasp sting allergy as being “like all those other vague psychosomatic things – candida, ME, they’re all the same, none of them clinically proven”.
I have gradually been getting worse again and in the end got her to refer me to a new immunologist -hopefully I will find one who knows about Masto. Meanwhile, I have put myself back on a regime of Clarityn and Zantac [ranitidine] and feel much better – but I know there is new medication out there and self-medicating isn’t the best idea.
My doc said the pruritis [itching] I suffered was because I used bubble bath – I don’t!
So that’s it… I’m fortunate in being nowhere near as ill as some. But it would be good to get the symptoms, especially tiredness and etc., sorted out properly. So many of the symptoms I read about now, having found the forums, are similar to mine though I don’t, thank God, have many others. One thing I have noted is that several US contributors to the mailing list talk about using their Epipens frequently, when they are feeling just ‘unwell’… I was taught by the consultant that adrenaline is not without risk and was only to be used in emergency – as in wasp sting when it was to be used without delay. He said “never be trigger happy with your adrenaline syringe unless you are stung”. I wonder if anyone else has any comment.
My lovely consultant was also keen on my getting it in proportion and on the pointlessness of trying to find a trigger for every little symptom – “You’d go mad” he said. “You know what your serious triggers are but don’t spend your life worrying about it. You have to LIVE too.” It was good advice and I have tried to heed it.
[anaphylaxis, reaction to bee/wasp stings, fainting, joint pain, mastocytosis, cystitis, adult]