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Hi everyone! Long term sufferer without a diagnosis

PostPosted: Thu Jul 20, 2017 10:37 am
by Smellyqueen

Hope you're all coping well. I have had symptoms since I was very young (6/7/8?) and I'm now hurtling towards 40...It's been a relief to read all your stories, especially as many people seem to have followed a similar course (trying to work it out themselves later in life). Obviously, I wish none of us were in this position in the first place!

My smell is bad most days and I'm currently messing with my diet to see what alleviates things. Working on a day shift for the first time in years had made me feel desperate again. The last time I tried to get a diagnosis was during my postgrad studies because the reactions of 'new' people were so bad. It all coincided with a period of eating fish and meat regularly though I'd been a vegetarian before, but I've basically never had a worry-free day *ever*.

In regard to the diet, I can't get on top of it. It's just impossible to work it out. I had three nectarines one day (which I thought was okay), had a shower and came back to find the bathroom stunk like ripening fruit....Dropping wheat and replacing it with white rice seemed to be working, even just before my period, but today I went home half-way through my commute because I got a few unusually strong reactions.

Anyway, I'll be reading the board and looking forward to eventually chatting online with some of you while I try to get a diagnosis - everyone here seems great and v kind.


Re: Hi everyone! Long term sufferer without a diagnosis

PostPosted: Sat Jul 22, 2017 6:13 pm
by PoetFire

welcome to the forum :)

Re: Hi everyone! Long term sufferer without a diagnosis

PostPosted: Mon Jul 24, 2017 8:47 am
by Smellyqueen
Thanks! Hope all is good with you!

Re: Hi everyone! Long term sufferer without a diagnosis

PostPosted: Mon Jul 24, 2017 12:58 pm
by Biscuit
Hi Smellyqueen and everyone. I have been following this forum for a while and this is my first post. Smellyqueen your story sounds so similar to mine. I'm a long term sufferer and first noticed my symptoms in my early twenties but looking back it might have started long before. I have tried unsuccessfully to get help and diagnosis from gps but have basically been told they can't smell anything, been given advice on personal hygiene etc. It's frustrating when you've worked up the courage over months to go in and then get nowhere. I have scrubbed myself raw previously and tried washing with antibacterial soaps, replacing all of my clothes etc. I've tried low choline diets which I think do help a bit, but make me feel unwell. The worst foods for me seem to be anything with soya lecithin, shell fish and eggs. I occasionally can smell myself, like if I leave a room I've been working in then come back in. Stress and menstruation also make me really stinky. Its making work and socialising miserable and I would appreciate any advice.

Re: Hi everyone! Long term sufferer without a diagnosis

PostPosted: Sun Jul 30, 2017 9:00 am
by Smellyqueen
Hi Biscuit

Sorry to take so long to reply - hope you see this. I totally empathise. My experiences with being rigid with the low-choline diet are mixed - no real reactions at work (touch wood, I'm sure this will change) and then lots of sniffing after I leave the office at the end of a ten hour day. The worse thing about this condition is definitely thinking I'm at least exercising control over it by not eating anything 'bad' and then getting an unexpected reaction. Aaaarggh.

Is there anyone close you can talk to about it? I wish I had an 'odour buddy'. The hardest bit is not knowing - there are days that I can smell nothing much and then other days I can smell other people quite strongly. But not myself ever (at least not how bad it is, based on other people).

I don't know if you should be too tough with the diet before getting proper help with it - I just made a list of things that are permissible in the week (it's short - butternut squash, strawberries, skinned cucumber, lemon tea - made by me, red bell pepper, olive oil, salt). I eat pizza at the weekend on Fridays. Use glycerin laxatives in the week (sorry for tmi)', two charcoal 30 mins after every meal, a riboflavin straight away. It's tedious as hell, and other people don't understand, but I figure it's my life and I've got to live it - not them.

I think it's helping but professional help would make a real difference, at least with the diet. Based on everything I've read on the forum, *keep going* until you get you get referred by your GP. The key just seems to be bloody-minded persistence (which is hard to conjure when you feel weak and teary, but eh).