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Discussion Starter · #1 ·
Hi people!,

Im new to these forums and also this illness. a month ago I had never before heard of lupus now it is on my mind every second of every day.
I have been very ill since Jan when I caught an infection after weight loss surgery. They put all the problems down to me being allergic to the gastric band. The band was removed and 4 months on i am still suffering but now they believe it could be due to lupus. I have had surgery 5 times this year to do with inflammation of my kidneys and stomach. I have suffered with low platelets, pnumonia, costochonritis (this is the most awful, the pain when I breath is unreal!!!), raynauds and they suspect I have arthritus in my elbow which means im unable to straighten my arm! I am exhausted all of the time and the pain killers just seem to relax me but not stop the pain. I have had rashes on my face which I have photographed ready for my first rhemy appointment.
Im really scared that they are gonna find nothing wrong with me!! well i know these pains are for real but i just want confirmation so I can get the right treatment and start to look ahead rather than being stuck in limbo!!
I need a reason for all of this does that make sense?

Much love and many hugs

Leigh xxx
 

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Hi Leigh and welcome to the board. It is a great place to find info and support. It is good you have taken photos of your rashes, have you kept a symptom diary as well? I hope the rheumy can help you, has your gp not prescribed more pain relief in the meantime?

I hope your appt goes well.

Deb
 

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Discussion Starter · #3 ·
Thanks Deb,

I haven't been keeping a symptom diary but I suppose I should I have 3 weeks until my appointment so it would be worth while.
Up until today i was on ibuprofen, fluoxetine and codine but he has stopped the codine and added tramadol and amitriptyline so I'm hoping for better results!! hoping wishfully for an undisturbed night!
I've been reluctant to post on here because I keep thinking that if they say I haven't got it then I would feel so bad but I really like that theres an undiagnosed section it makes me feel less alone and reading other peoples threads so much stuff seems to make sense. thanks for replying.

Leigh x
 

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Hi Leigh, Welcome. I too have recently joined here. I also, was hesitant to join, becuase I am not diagnosed with Lupus as of yet. I can tell you that we made the right decision. The peopole on here are great and so supportive. I was welcomed with open arms and it has been great learning from others, and also knowing that others here go through similar stuff.
I wish you well on your next appt. Hopefully you can get some answers.

April
 

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Discussion Starter · #5 ·
Thanks April,

I definately feel better for joining everyone does seem lovely and very supportive. Hope that things are not too tough for you and if you ever want a chat please feel free to find me

Leigh xx
 

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Hi Leigh and welcome to the best supportive site on the internet. The people on here do not judge and never complain when anyone has a good moan, in fact I think a good moan helps (it beats screaming!!) but screaming does help (when you have the energy).

Good luck with your appointment.
 

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Hi Leigh,

I am so happy that you found this site and decided to join. Many people that join here are not dx with Lupus and then at some point comes a diagnosis and they are already a member of a great forum so it all works out. Don't feel badly about joining without a dx of Lupus. If it is found that you don't have Lupus we will all be doing cartwheels for you.;););)

Honestly I tell women, and men for that matter that YOU know your body best and if you feel like something is wrong then there probably is, regardless to what your blood work says. A good doctor will look at the entire picture. There are members here who are sero negative Lupus sufferers. These are people who treat with awesome doctors that are willing to look at the whole picture and not just blood test results.

I am sorry you have suffered for so long with pain and other issues. It is a tough pill to swallow when you feel so bad and yet don't have a name to call it, make sense. A lot of people are actually happy to get a diagnosis because then they feel validated. I carried a dx of MS for over 3 years and I always knew I DID NOT HAVE MS. When the time came that I got my new diagnosis and was able to rid myself of the MS thing I was elated. Sounds crazy but having the wrong dx is just as bad as having no diagnosis, especially when you know your sick.

Good thing that you took pictures, smart girl.;););) Start a symptom journal and take that with you and also if your able to take anyone with you to your appointment........2 sets of ears are better then one.

I hope to get to know you better and wish you much luck with your up coming appointment. Join us in the chat room sometime and let us know how that appointment goes.:wink2::wink2::wink2:
 

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Hi Leigh,

As you can see this is a great site with caring members. :) We are willing to help you along with the journey of getting a diagnoses or not. It can be a long road to travel in getting a diagnosed.

You will learn a lot and that means knowledge to help your doctors in the treatment that you need. I say knowledge is power. You don't have to learn it all in one day though. I am still learning and I have been diagnosed since Nov.2004. ;)

Take care and I hope to hear more from you.

Lyn
 

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Welcome, Leigh! You made the right choice by joining us. I think that your fear of being told that everything is fine is a common one. So many of us have already been down that road. You come to the table with a lot of documented medical history--that's more than a lot of us have.

Something is definitely going on. If your rheumy blows you off (and, I doubt that will happen as you do have arthritis,) then you will find a new rheumy.

1tiredmama
 

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Leigh :grouphug2:were all here for you like Lyn as said, lets hope they get you sorted out asap.... glad you found this lovely site, im sure you will be helep, well i know you will, now your not alone

take care Lin xxxxxxxx
 

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Hi Leigh,

It was nice to meet you in chat yesterday!
 
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