Finally had a diagnosis

[Rhiannon.]

So for the last year I've been suffering with terrible hives, urticaria vasculitis, angiodema and painful joints. The worst has been the angiodema which has focused on my tongue, lips,and soles of my feet. My joints aren't much better and my parents seriously considered buying me a lightweight wheelchair since at times I literally can't walk.

Well, two weeks ago I got my diagnosis. Sjogrens Syndrome. I wasn't surprised, I believed I had it years ago. Always had trouble eating and a lack of saliva/painful salivary glands. My boyfriend teases me because I cant eat popcorn without choking but now it looks like I'm not being wierd, I genuinely can't swallow popcorn and other small dry things effectively!

Even though I've had a diagnosis though it hasn't stopped my anxiety. I'm not anxious about anything but I can feel it hovering over me like a black cloud just waiting for something to latch on to.

Plus I'm still in agony while I wait 3 months for my news to start taking effect. I'm just exhausted and fed up of being in constant pain/itchiness!

[Rhiannon.]

Meds are starting to kick in I think. My joints and muscles are better than that have been all year. I can actually get to my feet unaided!

Slightly concerned about my eyes though. The medication I've been out on has been known to badly damage people's eyes and I'll need regular optician appointments to make sure this won't happen. Makes me sad since my eyes are the one part of me that's never given me problems!

Plus I'm pretty sure I've developed a milk allergy. Already cut milk out months ago but two weeks ago I cut out ALL dairy. Bam. Skin clears up. Try a bit of chocolate and boom. Hives. Cheese and chocolate are whats keeping me going through my issues. Arghhh.

Oh well. Could be worse.

[nomorepanic]

I am being tested for this at the moment.

[Rhiannon.]

Let me know how it goes! I wish you all the best <3

I had a fantastic day yesterday. For the first time in months I was able to go out with my partner for the afternoon and in the evening I even managed to go to a group dinner. I had to leave early because my hives started to come up but I'm still happy I managed to go!

Today is back to agony though, haha. My hips, thighs and feet have been very painful so I'm back to shuffling around like I'm ninety xD

[nikkinik]

Meds are starting to kick in I think. My joints and muscles are better than that have been all year. I can actually get to my feet unaided!

Slightly concerned about my eyes though. The medication I've been out on has been known to badly damage people's eyes and I'll need regular optician appointments to make sure this won't happen. Makes me sad since my eyes are the one part of me that's never given me problems!

Plus I'm pretty sure I've developed a milk allergy. Already cut milk out months ago but two weeks ago I cut out ALL dairy. Bam. Skin clears up. Try a bit of chocolate and boom. Hives. Cheese and chocolate are whats keeping me going through my issues. Arghhh.

Oh well. Could be worse.

What sort of damage? Is that the kind of worry that gives you anxiety? I have similar anxiety around my medication for stomach issues (dementia being one and I've noticed significant changes in my memory over time).. I just have to weigh up which is worse and is it worth a risk! Still scary though.

You must be glad to have a diagnosis though, I would be :) it's not the best news I know, but knowing what's wrong enables the GP to put right the symptoms and make you feel better :)

Re the chocolate and cheese.. I feel you! I had the same woes over Galaxy and cheese! The Lactofree cheese in the uk and the chocolate isn't all that bad, you get used to dark chocolate and the fake kind, it's come a long way I think.. The GF bread still has some catching up to do though!

X

[Rhiannon.]

From what I have read it causes problems with the retina and ability to distinguish colours. It's very much a case of what is better for me too. Only been on the meds a month and it has already improved my symptons dramatically. Apparently it'll be three months before it'll take full effect too.

I'm glad that it's not Rheumatoid arthritis for sure! I do still get terrible joint pain but it's not damaging my joints. The other symptoms don't bother me too much because it's all I've ever known (dry mouth and eyes)

I've been munching fake chocolate the last few days. It's not quite the same but it suits me just fine. It's quite tasty!