I’m a newbie and looking for a bit of advice...

[Serena15]

Hiya guys I’m 19 and have been through the mil a bit with my health since starting puberty and only recently me and my family have been wondering if there’s a link with an autoimmune condition. Has anyone experience similar? I’m going to talk to my GP about getting tested for a range of autoimmune conditions.

It all started when I was 11 and I’ve always had excessively clicky joints and one day my right big toe started playing up I ended up being on crutches for 15 months and I had an operation as there was something wrong with one of the bones in my joint. Then at 13-17 I started having sever random swellings of my lips and hands I also experienced skin rashes and Dermatographia. I then had tonsillitis at 14 which lasted 8 weeks and I was very poorly with it so they decided to whip them out.

During this time I also developed bad stomach issues where I would burp sulphur, I was sick a lot and I experienced the most uncomfortable bloating. I also had bad burning stomach pains which would make me curl into a ball. I still occasionally get these pains.

This time last year I was getting tested for asthma as my chest was extremely tight and I was getting really bad chest pains when breathing in deeply ( which I still get and my GP doesn’t really know what it is). However I ended up falling ill at college last April and I spent 2 weeks in hospital as my heart rate was too high and I kept having these strange episodes. My heart rate was 150 in my sleep during one night and I couldn’t brush my teeth without feeling like I’d ran a marathon. I was diagnosed with IST ( inappropriate sinus tachycardia) and I also have a bicuspid aortic valve which is working normally. I have another echo next week and I’m also having a loop recorder inserted in the next few weeks for reassurance. Since all this I’m also seeing a neurologist as I have occipital neuralgia and both my big toe joints have started playing up 🙁

I’ve had many tests and scans but I haven’t been tested for any autoimmune conditions. Sorry for the long post and I’m also sorry if this is the wrong group to post in however I just feel a bit lost with it all!! Hopefully my GP can shed some more light on what could be going on.

Thanks a lot x

[Lupiknits]

Sending you a cyber hug! 🤗

[Hidden]

Hi! I am also on this forum wondering about lupus - so I'm not that experienced in anything. However, I have a friend with Elhers Danos syndrome and I know she has some similar problems to what you've explained so it might be worth looking into?

Either way I hope you feel better soon!

[Chanpreet_Walia LUPUS UK]

Hi Serena15,

Welcome to the LUPUS UK HealthUnlocked community. We offer a free information pack which you may like to download or request at lupusuk.org.uk/request-info...

Lupus can be triggered:

• at puberty

• during the menopause

• after childbirth

• after viral infection

• through sunlight

• as a result of trauma

• after a prolonged course of some medications

Skin involvement and joint/muscle aches and pains are symptoms commonly associated with lupus. There are specific tests and criteria that need to be met to make a diagnosis of lupus, learn about them at lupusuk.org.uk/getting-diag...

To learn more about lupus and topics such as the heart, brain, skin and hair visit lupusuk.org.uk/publications/

Please let us know how you get on, wishing you all the best.