[sarie]

Hi, Im Sarie/Sara or whatever you'd like to call me:wink2:

I am Engish but I have been living in Barcelona for the past 2 and a bit years. I am 23 years old.

When I was 19/20 (i can't remember) I went into hospital because all my joints had swollen up and I was unable to walk. A few years before I had swelling in my toes and my thumb joints.. I went to the dr's and they told me I should take ibruprofeno!!

So anyway whilst in hospital I saw a rhuemotologist and he diagnosed me with RA. A while later I moved here and got my self a good but grumpy rheumy here. He is quite good, but I have to admit I have not gone to all of my appointments. I guess I've tried to dig my head in the sand about it all.

About a month or so ago I got a horrid red rash under my right eye that has now spread to the other side. Its itchy and sore and looks horrid So now my specialist is trying to test for lupus and trying to push that as a diagosis.
(I have been taking methotrexate and steroids before that, and some expensive meds called zamene and aveno-something (its not exactly that but I can't remember (spanish pharm names I think!!)

My other symptoms include; sore swollen joints, fatigue (where most days its really hard to actually get out of bed), Im quite depressed, I suffer from migraines, occasional chest pain, especially if im in bed, rash on my ankles, itchy head and falling hair

Im glad to have found somewhere to share and talk, its nice to know Im not the only one with these issues. My boyfriend gets a bit fed up of me missing work and school (i study fashion design at uni here in BCN). Also I cry alot and get paranoid and sad.I uess its hard to see someone you love like that everyday. what are you experiences with relationships. How do you push through these feelings and being so tired all the time. I don't want to give up and not do something.
Help and advice would be very welcome!

ps today I have an appointment with a dermo

 

[sarie]

Oh and symptomswise;
I have terrible mouth and throat ulcers and my eyes feel pretty weird too.
Sorry about the spanglish, its early hahaha :rotfl::rotfl:

 

[Katharine]

Hello Sarie and welcome

Like you I'm an expat, only I live in Belgium - a bit colder than Spain on the whole :lol:

This site has been wonderful for me as there are no local support groups here and also it is so nice to be able to express all this in English. My only problem is that I often go to my rheumy with questions that I have formulated in my head in English and of course she doesn't speak much (though to her credit she has understood so far).

I can't help you much with advice as I am one of the lucky ones that doesn't suffer from any depression. I used to get quite down before simply from the constant pain and tiredness (and lack of sleep) but it was't true depression.

The thing about depression is that it can actually be an integral part of the disease (and is for many here) and it shouldn't be ignored. It can and should be treated as it is hard enough living with the ups and downs of an auto-immune disease without having to battle depression at the same time. Have you talked to any of your docs about the feelings you have?

As for relationships, again, not much advice. My ex husband was totally incapable of dealing with my illness (though he is not ex for that reason). My "now" hubby is wonderful, just takes things in his stride and accepts. That's probably easier for him to do as we're older. I'm 36 and he's 40.

Hope to get to know you better, speak soon,
hugs :hug:

Katharine

 

[KarolH]

Hi Sarie,

So glad you found this place. The support you get from caring compassionate people here is just awesome. These folks have been just super and they are knowledgeable too.

Sorry your feeling so badly. It is tough when you do not feel well. I think a lot of the folks on this board suffer similar things to you. Hopefully you can get on medicine that will help get it all under control.

Read all you can and learn. Knowledge is power. Let us know how you get along with your dermatologist appointment today and good luck.:wink2:

 

[LolaLola]

Hello Sarie, Welcome here.

Although you ahve missed some appointments in the past, now is the time to take control. It can be hard. I used to have the rash badly on both sides of my ankles and lower legs. It was very sore and itchy,so you have my sympathy. Fatigue is also a symptom we all battle with,so we understand how you feel.
x Lola

 

[Mrs M]

Hi Sarie and :welcome:

I'm sorry to hear you are feeling down at the moment. I hope that things improve for you soon.

I'm not diagnosed so not that clued up on things but am always willing to listen. This site is fantastic!

Since coming here I've begun to understand more what is happening to me and the people around here are always willing to help and give support and advice.

I'm sure somebody will be along shortly to help you out with your query. Until then take care and I'm sure we'll speak soon.

Mrs M

 

[sarie]

Thank you everyone! Its really nice to know I can explain things and people say oh me too! Im not the only one who has these weird things.
The rash on my face is red and itchy but stings/burns alot. Its right under my right eye and a little under my left eye too. I went to the dermo the other day and they said that they need to see it when its really bad as it was hard for them to see it. It comes and goes.
I also got my bloodtests back and nothing out of the normal shows up, especially to indicate lupus. Or even anything to do with rheumatoid arthritis... Its highly frustrating but good at the same time. I just want to know what I actually have. Not sure if this is common with the bloodtests???
Katherine, how did you find it at first battling a foreign healthcare system? Do you find it harder to cope "away" from the UK?

I have been told I need to be stronger, by my boyfriends Mum. And then a long list of ailments after that, to be told Im young and shouldn't be complaining blah.

Anyway lovely to meet everyone!

 

[Katharine]

Hi Sarie,

I'm maybe not well placed to say how I found battling a foreign healthcare system as I left the UK when I was 14 and Ireland when I was 18 so other than broken bones don't have much memory of either system.

The system here in Belgium is extremely good and also "easy". For example you don't need to go through the same referral systems and can just call the hospital and book an appointment with the person you want to see.

We can also freely choose our GPs and mine is excellent and very supportive.

I used to have a mother in law :lol: (my ex husband's Mum) and am glad to say that my "now" hubby came in a "no mother in law" package!! I'm afraid that the only thing you can do with people like that is ignore them. I would say that so long as your boyfriend doesn't act the same way then just try and get on with it without telling her anything.

As for bloods. It can take a long time for anything to show up in bloods and for some people (only abut 2-5%), it never does. As you are already seeing a dermy, I would make sure that I took photos of the rash when it is worse but also maybe ask him if he thinks that doing a skin biopsy would be worthwhile. I had one done on unaffected, unexposed skin (on my stomach) and that was what clinched my diagnosis. Without that I could have gone on suffering a lot longer. Some dermys do biopses on affected skin but, obviously, if th rash is on your face the other option wuld be better.

I suppose whether you feel he'd take well to you coming up with that suggestion depends on the relationship you have with him.

Are you still being treated for RA? Or are you now without any treatment at all?

Katharine

 

[sarie]

Hi Katherine,
Im currently on and off methotrexate (long story!) and have been for about a year or so.
I find the dr's and healthcare here really good, but sometimes due to language somethings get a bit lost. I want to know what my blood tests mean (the results are in catalan!), and I kind of just want some results as I feel I would be able to deal better. Im sure they are doing everything they can. My rhuemy here actually trained with my old one in the UK so I guess Im pretty lucky in that aspect. The reason I asked if you fealt thatyou were receiving the same amount of care is because I think some places test and do things in a different way. For example here they will only do a biopsy on my face when its got the rash, I think they won't start to think otherwise unless they have the evidence of the biopsy.. which for me is frustrating because as you said it could be years or whatever without something showing up¿! Ahhh its just annoying altogher I guess, haha complain over!

You sound as if you've had an interesting life btw!