rosiedoes | Long explanation about my internal thermostat fail.

Well, I now have confirmation: I have Raynaud's Syndrome.

Balls. I wanted a curable illness, goddammit! Now I'm stuck with random, foundationless symptoms forever, or medication intended for other conditions to manage it. :|

Let me start at the beginning.

After five rounds of blood tests, which basically kept coming back a bit shonky, they've figured out I'm not ill and don't have a secret lurking illness, I just have what my doctor described as "more of an immune system" which makes it look like I'm continually fighting an infection that doesn't really exist. I just have more of the little white cell jobbies all the time.

So. After leading my doctors a merry dance for the last few months, we've confirmed that I have Raynaud's.

Raynaud's is usually something you have along side other conditions - like arthritis - because it's not a disease itself, it's a syndrome (which basically means a collection of symptoms someone noticed seem to show up together and react in the same way). In me, however, it's entirely spontaneous. Theoretically, I should be glad I don't have a disease, but the problem is that Raynaud's doesn't have a cure, because you can only treat the symptoms. And no one has bothered to make a medication specifically for the condition, because no one can be bothered.

The problem with that, is that they now have to manage people's conditions with medication designed for everything else. Those who suffer more from the coldness will sometimes be given medication for high blood pressure - but that makes them glow/flush with heat all the time and can cause them to faint regularly from low blood pressure. With my condition, which is both cold and heat related, giving me that medication would just make half of it worse. So now he's trying me on the same thing that he tried on three other patients (which worked excellently on one, and not at all on the other two) which is to put me on antihistamines for a month and see what happens.

Another female patient is currently due to see a dermatologist for his feedback, and once Dr T hears what they have to say about her, he can apply the information to my condition.

Two potential therapies he's heard about on the grapevine, but in his words "sound a bit Dr Spock" are a form of botox and laser treatment to shock the capillaries or something. He's doubtful that those are widely available, but fuck, if it means it can fix my condition I'll go into trials for them.

I'm mostly just hoping that we can get the hyperhydrosis under control, because although I know most people don't even notice, I do and it makes me uncomfortable. With summer coming up, I'd like to get it sorted sooner rather than later.

Meh. It's pretty sad, isn't it, when you'd rather have the tumour than the syndrome because it'd mean you'd actually get proper treatment?

Flat | Top-Level Comments Only

Mmm. My sister has Raynaud's. She was told it's usually (sometimes?) genetic (and there's evidence to support that - my mother has always suffered from the cold too) and, yes, there's bog all you can do about it.

It's because it's not usually fatal. Just annoying, at it's mildest and only unliveable with at it's worst. Quantity of life seems to trump quality of life.

I'll keep my fingers crossed for you that you can get something that will, at the very least, treat the symptoms adequately, if not a total cure.

Thanks, hon.

My nan's sister had it, and although it was never diagnosed in my mum, she always had icy cold feet...

I just really want to stop sweating, because it means my make up runs off and my hair goes all weird and curly...:(

Bleh. Suckage. *hugs*

*hugs* I know, right?

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Yeah, it's not fun, really. But it could be worse, I suppose. I shouldn't complain too much.

mm, i see what you mean, but. you know, i'm glad you're not dying or anything. hope you find something that'll treat it adequately.

I wouldn't mind if I was dying, really. I have no attachment to the mortal plane.

=(

I don't think it's sad to wish it were something curable at all.

I hope they do have some sort of promising new experimental therapy out there, though.

Me too, man. They're not shooting lasers in my eyes, but if they think it'll cure this, I'm happy.

Poor thing, big hugs and fingers crossed the anti-histamines help. It's interesting that you have an over-reactive immune system. That means that an anti-inflammatory diet might help you. Lots of fish, fish oils, fruit and veg, and no sugar, white flour or products plus low saturated fat (including butter, cheese, pork or beef products), plus a vitamin C supplement.

Thanks, hon.

I do eat quite a lot of vegetables at the moment - a lot of tomatoes, peppers, courgettes (all of which are fruit, technically, I know), carrots, corn, peas, garlic, onion... that kind of thing.

I couldn't go without bread, pasta or cheese, though. Or sugar. Couldn't do it. Couldn't afford it, either. Fish is expensive... :( It's the one thing I'd happily live on every day, too.

My friend Alice has Raynaud's. The sweating thing was horrible for her. I mean, I didn't notice much, but she did get big patches, and was very self-conscious, always carrying around spare t-shirts and things. We spoke to some nice ladies in Lush and she uses their deodorant's now and says that they're the best she's used, but it's such a bummer.

I'm sorry you got the unfixable thing! No one wants the unfixable thing. Like my lack of being able to eat cheese and ice cream anymore. Why couldn't I have had the cut-out-my-gall-bladder thing?!

So basically, I feel your pain, to some extent at least. *hugs*

Thanks, hon. I might have to go there and find some Lush deoderant.

You might have the rarer form of Raynaud's dude. Definitely go back and see what they can do. Did anyone mention Raynaud's in the past? If not, tell them that's what you think it is, and that you know it predominantly relates to cold.

I would. You should at least be being prescribed deoderants to stop it.

If you google it, you might find the name. I think it has Aluminium in it.

Suckage! My friend has this AND Crones. She deals with the sweating a lot.

And I totatlly understand the want of a tumour vs the syndrome.

A nice little benign tumour can be removed, you know? It would be easier.

But having Crohn's would be seriously epic nastiness.

Botox is actually commonly used for hyperhidrosis, though it's considered cosmetic so you'd probably have to pay for it.

Maybe where you come from! Haha.

We'll have to see. I'd need my whole body botoxed anyway...

Sounds a bit like fybromyalgia, in the sense that for the longest time there wasn't a treatment for it and people were prescribing antidepressants and such, but now there's actual medication for it. So I hope they figure something out for Raynaud's too. Having lived with my grandmother who suffered from fibro all her life, and knowing people my age who have it, I sympathise with the whole 'incurable collection of annoyances'.

That's pretty much what it is, really - an annoyance. Although, whem my hands and feet go cold it can be pretty painful...

I can imagine. Well, I hope the doc figures out something to make it as manageable as possible for ya.

I am most certainly glad that you aren't dying but having an uncurable "disease" does suck! Good thing they finally figured it out, too bad it's not the greatest news. I hope you can get the symptoms under control bb!

Thanks, hon. I guess at least now I can say, "This is what I have and this is what it does."

Ugh I feel for you.

My sister has Raynauds, and it drives her crazy, she can't wear the same top twice without washing it. Costs her a fortune.

I get what you mean about wishing it was something else so you'd at least get a real treatment.

Hope the antihistamines work and you feel better about it :)

Thanks, hon. I have that problem, too - it's basically become the norm for me, though. I haven't worn the same clothes twice without washing them in years...

I guess it at least proves I'm all clean, though! Haha.

Long explanation about my internal thermostat fail.

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