The Most Pitiful Guy In The World Is Asking A Question

Ok so basically I have an allergy to food coloring for example when I was 7 at a birthday party I ate the cake with the icing so I got a ******* bad rash it was like a red volcano erupted and I was embarrassed so I never talked about it again until today....I also have an ungodly horrid immune system it was "****" I couldn't just run through the rain for a few secs if not I got sick...I couldn't go on a roller coaster ride because 5 mins later I would get dizzy for about 3 mins the vomit for 2 mins....then it started to effect my school life oh did I mention that if I get overly excited I get the rashes....back to the subject school...was not good because of not coming often it started to effect my grades and I didn't have alot of friends because they thought I didn't come to school for fun(they should be worshipping me If I was like that...******)after I gave my doctors note they still didn't believe me(idk why stupid idiots) so I never had friends but teachers loved me...maybe because they pitied me

So...I was wondering if you had a solution to my problem tqvm ...

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  • Hello dr HC & welcome

    YIKES: how old are you? And where did you grow up? I'm 63, have infant onset lupus and grew up in the states before moving to the uk @ 21. Am asking your age cause the vivid details in your post remind me of the sort of things that set my signs & symptoms off when I was a child...being 7 was especially hard: I think that was when my health issues I began to make me realise just how "different" I was from other children. Cake flavourings were a BIG prob for me...and I hated amusement parks because the dizziness meant I had to wait alone for everyone to have that fun etc etc. My mother & doctors kept my lupus diagnosis secret, so I simply thought I was normal but weirdly vulnerable health-wise.

    Lucky for me, I was good at 'independent study' so applied myself to figuring out a lifestyle management regime that could help me to as much quality of life as possible... + the uk health system did handle my emergencies well over the decades, and also competently diagnosed, treated & monitored most of my secondaries. But it didn't figure out the lupus underlying almost all my multisystem health issues until 6 years ago when the progression of signs & symptoms had become so obvious that my Pain Consultant urged me to insist on referral to a rheumatologist who ordered lupus blood tests. At that point my mother told me: but dear you've always had lupus! I said: what's lupus?!

    The rheumatologist expert in immune dysfunction & connective tissue disorder who went on to figure my case out, is my hero: she gradually got to know my version of this type of illness and now her combined therapy treatment plan has me living with less pain & reactivity + with more stamina, resilience and comprehension than I've had since my early 20. I feel extremely lucky to be here in her care

    Now I understand there can be other causes than lupus underlying reactivity like ours. My feeling is that there are medicos out there who can figure us out. If you haven't been diagnosed with lupus already, I hope you find your hero πŸ’‘ True Detective diagnostician soon. Meanwhile, apply yourself to cracking lifestyle management. Your post makes me suspect you must be doing this already!

    πŸ€πŸ€πŸ€πŸ€ coco

  • I'm with Barnclown. I couldn't hack even a tiny crumble of food colouring and always reacted just as you describe to "fun" rides. I was an autoimmune babe but, also same as Barnclown, this only showed itself up in the form of crazy polyarthritis, in 2011. Since then it's been a different kind of fun ride.

  • πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹ twitchy...lately I've been wondering whether one of the reasons 'experts' claim infant & childhood onset lupus is ALWAYS severe & life threatening is that over the centuries youngsters with 'relatively' mild immune dysfunction went mainly 'incompletely' diagnosed...mainly only severe cases were identified, and of course these were more dramatic. I count my infant self lucky to have had the cause of my dreadful rash diagnosed in New York by a switched on physician in the early 1950s when the diagnosis & treatment for lupus was still relatively basic.

  • It could well be thus BC. I was told by a CTD professor that the main reason I didn't have Lupus was that, by now post menopausally, it would have caused organ involvement and would be on the wain post menopausally - whereas my autoimmunity is still active. So he backed up my first rheumy, (his colleague) that I had RA with secondary add ons.

    But the skin is an organ and mine is now covered in little scars and blemishes from decades of horrible eczema and allergies and my small nerve fibres are badly affected - and this is skin. Also my GI system is affected by autonomic issues and lack of moisture and I have small vessel disease of my brain. So I think he was wrong but primary Sjogrens is only usually diagnosed in women over 40. Which isn't to say that they haven't suffered from it all their lives or that men don't get it. It's just that there's a mysogonist approach to diagnosing certain diseases only in women of a certain age in my view. Having previously landed them with non diagnoses such as ME and Fibro or anxiety disorder or all three.

    My mum never sought doctors' out about for their opinions on my multiple allergies or alopecia. Like so many of my issues it was presumed by her and my dad to be anxiety and as they felt responsible for causing me stress- they avoided taking me to health professionals who might have wanted to know more/ investigate! My mum dropped dead at 73 having failed to report her own major symptoms of atherosclerosis to her GP or anyone else. She had reached her own conclusions that her symptoms were a sign of early onset dementia and went out like a puff just as she hoped to. It never even occurred to her that the signs of vascular dementia were the result of undiagnosed atherosclerosis! So my parents failed me and themselves on the health front and I agree with you entirely that we are now paying the price of this early health neglect . X

  • Well said! πŸ‘πŸ‘πŸ‘πŸ‘

    And my mother went in for colonic irrigation & macrobiotics while her unrecognised rectum tumour became plum-size & malignant.

    The way the skin's significance as a major organ is discounted gives me the heebie jeebies!

    πŸ€πŸ˜˜

  • Oh Coco..these are staggering stories 😘

  • Yes dear PM ❀....so many big sad stories, so many more awful than mine. I was lucky my lupus was mild...but the milder types can enables establishment negligence...resulting in extra trouble & expense due to cumulative damage. Catch 22 πŸ˜πŸŒˆπŸ¦„πŸ˜˜πŸ€

  • So very true dear Coco πŸ™ˆπŸ™‰πŸ™Š

  • Gosh twitchy πŸ˜₯πŸ™„πŸ€”πŸ˜¬πŸ˜˜

  • Thank you for the helpful advice that you've given me....I'm 20 and just indulging in my past experiences that brought me quite alot of pain,grief,mockery and yet happiness for the friends that have pieced me back together through the years

  • Friends can make all the difference!

    I agree with paul: hope you do discuss all your health probs with your doctors: it's important to get these signs & symptoms in your record...thus helps diagnosis enormously

    Take care

    πŸ€πŸ€πŸ€πŸ€

  • Hi Dr_Harris_Collins,

    Have you discussed your health problems with your doctor? Have they done any tests or referred you for further investigations?

    P.S. I have edited your post to remove the swearing. Please refrain from swearing in this community.

  • Hello Paul_Howard

    Thx for doing so I apologize on swearing such profanities

    P.S I'm new so please monitor my posts for any "Mistakes" that was done on my part.

  • No problem :)

  • I am allergic to yellow food colouring and have been since childhood it is a pain as lots of medication is coloured?? Why it is I don't know. I also have multiple allergies to antibiotics and immune supresents which can be a pain. I think that these all come with early onset Lupus (when I look back I think I had it around 10). It is a pain but I do try to avoid any thing that can make it all worse. I have found through the years that worrying about leads to stress and so flares. So trying to lead a stress free life if possible

    As for my skin even having my blood pressure taken can lead to a rash which lasts for hours

    Hope this helps. Lupus is a hard disease to live with due to the fact that it's never the same for two days. It's all ways throwing something new into the mix 😘

  • I agree with everything already said, Lupus is difficult to diagnose and as we know has to hit certain markers in the medical world. That is not to say that we do not experience a list of other problems such as allergies, dizziness, that are not on the list but common. Also there are so many other autoimmune conditions that give similar symptoms, that have to be sorted through. Unfortunately as we have said in the past, it not until we get older and we have more symptoms that we put together that a diagnosis is given. Go to your Doctor, with a list.

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