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Discussion Starter · #1 ·
Well, I discovered Lupus about an hour ago and this forum not long after!!! It is possible that Lupus has been my problem for many many years. Of course I could be very wrong, but so many things have come together, that it certainly seems to make sence.
I have so many questions and so much to say, but have no idea were to start. So maybe just 'hello' will do for now. ;)
 

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Hello!

Yes, hello is a good place to start and :welcome: to you.

I'd say that taking a look at the threads posted at the top of "not yet diagnosed" giving you the criteria and alternative criteria would be useful. That way you can see if any of your symptoms fit what's there.

Other than that, feel free to ask questions, we'll try to help as much as we can :)

bye for now,
Katharine
 

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Hi

Im from haverfordwest, wales and was only diagnosed in may 2007, this site is great, theres always someone to talk to, remember you are not alone

Ask as many questions as you want, we will all try to answer them as best we can.

If you want to talk, just login

Take care
Amanda
 

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Discussion Starter · #4 ·
Thanks for your welcome! I have been looking at the threads and trying to absorb as much info as possible, lupus still seems like a possability for me. I guess time and a trip to the docs at some point will tell! I might be moving house which will mean a change of doctors, so I will wait before I run it past them.
I live near Wrexham Amanda, if the move comes off will put me nearer Llangollen. :)
I found out tonight that a family friend has just been diagnosed with lupus - I hadn't even heard of it before yesterday :eek: Isn't it wierd how things like that happen?!:hehe: I will be emailing her a link to here ;)
 

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Hi 2cay,

Welcome to the Lupus Site. What symptoms do you identify with most? Is there something particular right now that sent you on the search that led you to lupus?

Take care,
Karen
 

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Discussion Starter · #6 ·
Hi Karen, thanks for the welcome.
I have actually been feeling brilliant for a long time now, apart from my hands which have started hurting and swelling again over the last few months.
The reason I found the site and lupus was because I was watching a programme that mentioned the rashes and joint pain. I suppose because my hands are painful again I linked the two together and thought that's me! Although my rashes are not bad at the mo. I looked it up and here I am! :lol

I have had many symptoms since puberty which come and go, get worse or better for a while, but sometimes feel devistating. My constant trips to the doctors which always resulted in..... nothing :mad: eventually left me with anxiety/panic conditions too :( . I'm not a hypocondriac though and most of the time just get on with life and ignore and self treat my symptoms as and when they flare up.

I don't know which if any of my symptoms are lupus, hence my need to absorb more info here! But here are all the things I think could be relavent, apart from my hands none of which are bad right now but have been in the past and are always floating just under the surface if you know what I mean!

Joint pain - arthritic type pain in my fingers, worse in the mornings at the moment it's in my wrists too with constant aching. Hand pain started in my 20s. In my early teens my knees were as painful as toothache when I bent them, now they are just weak and hurt if I try to run. Had a hip pain for 6 months to a year for no aparant reason which went on its own. I used to get stabbing pains in my big toe.
Swelling - My fingers/hands swell up mainly in the morning, at their worse (for 5 years) they would swell so much in the morning that I couldn't dress myself as I couldn't move them. My extremities get easily hot or cold.
Rashes - I have a constant battle with patches of what I always thought was ezcema on my face. It can get very red, raw and itchy. It usually starts on the inside of the bridge of my nose and spreads into my eyebrows and under my eyes. My forhead is usually effected to above my nose and along my hairline. Hardly ever on my cheeks or chin.
I have tiny pin head sized blisters on my wrists and elbows. They are always there but sometimes they get really itchy and inflammed, like little scabs.
I suddenly got broken veins on my legs at 15 which have got worse over the years and I have them in lots of other places too now.
Digestive/illness probs - I suffered for many years on and off with gastric probs, pain and sickness and general unwellness often with bad bouts of gastric flu type symptoms.
Intolerances - I became intolerant of gluten for about 3 years and have to be careful that I eat healthily or that can set things off. I can't touch caffeine or I go potty and get ill!!! To many carbs will really effect my alertness.
Fatigue - This was a major problem for me from puberty onwards although that last few years have been sooooooo much better. As a teenager I had to sleep 14 hours a night. I can now manage with 9. I was always tired and dragged myself through the days. I did have anemia at one point for which I was treated but the tiredness never went away. Even now I wouldn't say I was normal. (I'm in my 40's now). All the usual tests showed nothing.
Wee probs - I have had urinary probs, again since puberty. It's a standing joke on how often I need the loo! All the simple urine tests I've had show protien and they always say I have a touch of cyctitis, but I have never had any pain. I have had many bouts of kidney infections too.
OMG this is turning into a book!!!! :blush: OK there's lots more but that will do for now :lol
Does it sound like lupus symptoms to you?
Do you guys ever share pics of symptoms? I have been looking at some but they look worse than mine. I wonder it they are worse case senarios? If they are the norm then I would think I'm a lucky freak or don't have lupus.
(Thanks for letting me ramble on, it does help :) )
 

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Hi 2cay,

Welcome, glad you found this place..its wonderful isnt it?

The symptoms you wrote do seem to lean to some type of autoimmune illness, possibly lupus? Lupus is known as the great imitator, one of the reasons why it is so hard to diagnose at times.

Many people seem to have similar symptoms to yourself. Check out the not diagnosed yet and symptoms threads for more info.

Have you ever been tested for lupus or any other types of illnesses?
 

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Discussion Starter · #8 ·
Hi Mysharonna, I have been tested, and repeat tested, for allsorts over the years. Mainly for fatigue, so anemia, thyroid, glandula fever etc and x-rays for arthritis, but apart from the anemia they always come back normal. Don't think I've ever been tested for lupus. I will have to ask for the tests, though I want to wait until I move before I start asking for more tests. I will get the :rolleyes: look and can't move house and cope with that at the same time :wink2: :rotfl:
Thanks for the advice. Everyone has been so welcoming. I will keep reading the threads for more info. I noticed someone asked about their nails which was interesting as mine are always braking and ridged. My mum and sister have beautiful nails naturally, but mine are crap! Just another possible indicator?!
 

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Hi ,
I live in Reading ,UK ,
I was diagnosed of Lupus in 2009 after being very ill since 2006 with severe migraines which caused me to be in bed alot as my migrane were constant and multiple in a day and very painful.
They (migraines ) are well controled now. The lupus flare is the one is the most painful that i find. I struggle to sleep at night. Makes my joints inflammed and muscles very painful.
Most recently, I discovered that I cannot eat Garlic and Mushroom the 2 food that I like in my food .I am ok with onions (shallots).
Being on meds with lupus since my diagnosis and has been controlling it well and keeping it stable.
What i find is sleep is most important if i find I am tired and painful and i need to sleep I sleep. It helps with rocovery and healing , i do wake up feeling much better afterwards more refreshed less painful

Walking sometimes helps when I am not in pain. Not so good when I am in pain it ,as it make it worse it when I am in pain..
My family has been great through out my diagnosis and been very supportive.

So when I am feeling good in my peak i then to do most things around me to catch up but space the week. As I know I hv about a week of peak. Before the flare starts again.

With my migraines I keep a chart to monitor my migrains. It is quite interesting to see how the migraines relates to the lupus (coincidence??) Flare.

I find knitting helps to a certain extend . Keeps my fingers supple and painfree. My brain working throughout ,and helps me to relax, which is the main thing. Keeps me calm.

Find something that keeps you occupied and keeps u calm to take your mi d of the pain at the same time give you pleasure.

Hope you have a good week.
 
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