[Lucy-Lemon]

hi,

i'm lucy & i'm 15.

i feel a bit iffy about coming on here but i thought its worth me asking either so i know whether to mention lupus to my GP when she comes on friday or so you can all put mine and my mums minds at rest.

i have ehlers-danlos syndrome which was diagnosed las october after a lifetime of suffering which got progressively worse as i hit my teens and has ended with me almost housebound. of course thanks to eds i get the whole joint dislocation/subluxations, the joint and muscle ache and chronic pain, stretchy but quite fragile skin which scars badly and i get really bad headaches - well what seems to be a constant headache which varies in intensity. i take no medications as all the onces i've tried over the last few years have failed.

but recently a few things which we originaly shrugged off as ehlers-danlos have started to worry us.

i've got extremely bad infections in my toes and am prone to athletes foot
i've got an infection in my mouth which we think is oral thrush but i've had it for about 4 months now and everything we've tried to try and clear it up hasnt worked
i'm prone to mouth ulcers and if i go a few weeks without one im lucky
i've had a rash-type think in my scalp for quite a while and no matter what shampoo's we use we can't help it (we've tried simple soap types, the usual herbal essences and even medicated shampoo's) - i have long thick hair, and we never condition the roots. my sister gets eczema on her scalp from time to time but this is different. it's itchy but at the same time sore.
and over the last few days i've had a rash on my cheeks which is itching and driving me crazy but its sore, we've been putting E45 on it but it isnt helping.
mum also said the other day my skins been a bit blotchy, but tbh i havent noticed.

what do you all think?

am i being silly or is it a possibility?

i've seem many people over the years, had many courses of physio, an MRI of my spine, and did a 2 week stay at the University College Hospital in London, yet i've not had a blood test (well i had one in 2007 but was a very basic one and was when we thought my only problem was just hypermobility - they werent looking for anything in specific).

i've gone on sorry,

i go on a few forums so if i sound familiar you know why...

take care all
Lucy xxx

edited to add - in february 08 i was given a diagnosis of fibromyalgia, although that seems to have been put to the back since the eds diagnosis - dont know if that makes a difference

 

[LolaLola]

Dear Lucy, Yes, I have EDS Type 3, Fibro and Lupus. Fibro often occurs as a secondary in EDS.
My Son was badly affected by EDS in his teens especially. Cannot write due to extreme shoulder girdle instability. The good news is that when your growing slows down (which shouldn't be too long) it often gets a lot easier. He also had a lot of severe vision problems due to the laxity of the eye ligaments.

It is certainly worth running a few blood tests and taking a good look at your medical History.
Who diagnosed your EDS?
X Lola

 

[onetay]

Lucy,
Welcome, I think that you should tell your doctor all that you just told us and see if he or she would check into the lupus for you. I wanted to say that I am so sorry that you have so much going on and only 15. I am sure you are handling things well as you sounded very comfortable with your post. You must be a pretty amazing person, I just wanted to say that. You should join us in chat sometime. If I have learned nothing else with sle I learned this anything is possible with it. I know you don't have a dx of it but I am sure as you have made your journey with your health problems that you have found this very true also. It was wonderful to that you shared your story with you thank you.

 

[Lucy-Lemon]

Dear Lucy, Yes, I have EDS Type 3, Fibro and Lupus. Fibro often occurs as a secondary in EDS.
My Son was badly affected by EDS in his teens especially. Cannot write due to extreme shoulder girdle instability. The good news is that when your growing slows down (which shouldn't be too long) it often gets a lot easier. He also had a lot of severe vision problems due to the laxity of the eye ligaments.

It is certainly worth running a few blood tests and taking a good look at your medical History.
Who diagnosed your EDS?
X Lola

Rodney Grahame was the person who diagnosed the Ehlers-Danlos, we had to pay privately to see him. he was extremely thorough, and was very quick in getting his 'review' and diagnosis to everyone in the post. we went to see him on the 7th october and the letter was here by the 17th, which i thought was pretty impressive considering what doctors are usually like

thanks both of you, ill definitely mention it to my GP.

and thanks onetay :blush:
i've learnt alot about myself over the past year which can only be a good thing. still learning to take things one day at a time though, i used to be one for planning months ahead (i had my life planned out til i was 40 before all of this got out of hand) :rotfl:

take care everyone,
Lucy x

 

[Lucy-Lemon]

just thought i'd update...

my gp is concerned and thinks there is a big possibility it is lupus, but has told us to try out a few things to see if we can clear things up individually.

she's given me a new cream for my ulcers (Adcortyl), a cream for my face/rashes (Hydrocortisone), a new shampoo and a cream to rub into my scalp (can't remember what they're called).

things seem to have deteriorated quickly since monday when the rash came up. and then yesterday (before i had used any of my new cream or anything, just to confirm that they aren't the reason) i woke up and my face was puffy/swollen, i had another mouth ulcer and the rashes on my face and scalp were itchier than ever. we can't seem to find out why, as i hadnt eaten/drunk or used anything new.
i've woken up today with a slightly less puffy face, although around my mouth is very tight and everything is playing up. i also seem to have a very sore throat (like tonsilitis sore) and my chest is a little tight. i can only drink things through a straw, and eat soft foods. a) because i can't open my mouth wide enough and b) because of my tongue and ulcers :sad: talking is also hard, and the rashes are still driving me crazy. (keep having to tell myself not to scratch)

i was meant to be going into school today for a lesson but that had to be scrapped, and i have my french tutor coming this afternoon, dont know what to do about that. mums not keen on cancelling as she didnt come last week thanks to the snow, but i dont know how im meant to try and speak french when i can't speak properly at all. and for the life of me can't remember any french, although thats nothing new :lol:

my gp has said if things dont start to improve with the things she has prescribed then she wants me tested for lupus.

well end of my moan, i hope everyones ok
take care
Lucy xx

 

[LolaLola]

Lucy, Rodney Grahame diagnosed us too! That was quite some time ago and he seemed fairly old then. I am glad to hear he is still working.
X Lola

 

[keebler]

Hi Lucy,

Have taken pictures of your rashes and written down when they have appeared and when they disappeared?

I hope you are feeling better.

Take care,
Lyn