LUPUS UK

I AM SCARED.COM

I HAVE GOT MY FIRST APPOINTMENT THROUGH FOR ST. THOMAS'S.......2ND AUGUST!!!!

AM EXCITED AND SCARED ALL AT THE SAME TIME. EXCITED BECAUSE I HAVE PUT SO MUCH HOPE INTO THEM WORKING OUT EXACTLY WHAT IT IS THAT I AM SUFFERING FROM, AND SCARED REALLY FOR EXACTLY THE SAME REASON.

I HAVE BEEN FOBBED OFF AT MY GP'S SO MANY TIMES THAT SOMETIMES I EVEN DOUBT MYSELF.

AT THE MOMENT I AM IN EXCRUCIATING PAIN, ALMOST HEAD TO TOE. MY KNUCKLES EVEN HURT NOW. MY KIDNEYS, MY BACK, NECK, SHOULDERS, ELBOWS, WRISTS ETC. IT MAKES MY MOOD SO LOW THAT MOST DAYS I WANT TO CRAWL INTO BED AND JUST SLEEP.

I HAVE JUST BEEN DIAGNOSED WITH RLS (RESTLESS LEG SYNDROME) AND HAVE BEEN PRESCRIBED GABABPANTIN. THEY DO MASK THE PAIN BUT WITHIN HALF AN HOUR OF ME TAKING THEM I AM SPARKO

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Hi Mandie, I am thrilled for you that you have got your appointment through and hope you get some real answers for your pains. Hope to hear more after you have your appointment.

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hiya, thanks for that M, i cannot wait for some real answers that i will believe this time. I just dont get it.....all of us seem to have had the same problems with diagnosis and treatment and yet GP's seem still to struggle

i am really tempted to go down the homeopathic route

but i will see after the hospital and i will definately keep you posted.

Have a good day my friend xx

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Hi Mandie

Hey good luck with the forth coming appointment and hope all goes well,remember to write down and questions you may have between now and then,,perhaps keep a diary of pain etc ?

I too suffered from RLS hey and have to say since i was put on Gabapentine a couple of months ago i have not had an episode (touch wood) stays that way!Have you tried first taking the dosage only at bedtime?

Wishing your pain eases for you soon.x

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hi Jinny,

Thanks for your message. I was told to take only one gabapantin in the morning and see how i got on, well i cannot really take them in the mornings cos they literally wipe me out, but you are right they do deal with the RLS nicely, altho dont seem to effect the pain so much. To be honest i almost welcome being zonked out as i dont feel the pain then but i am sole carer for my elderly dad and so that luxury is one i cannot afford

but never say die!!! i will find something soon i hope

what other meds are you on then? xx

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Good luck for your appointment. I hope you get all your questions answered. It can be a bit scary at first but don't be afraid to ask them to repeat or explain anything you don't understand. Hope it all goes well xx

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Thanks Claire

I have my list, which i add to daily haha. I am so used to being looked at as a hypochondriac by my gp's tho that I will need a little dutch courage maybe.

But i am determined not to be brushed off this time!!

Hope today finds you well and happy and enjoying your day, pain free xxx

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Hi. I've just joined and your blog was the first I saw. I am a patient at St. Thomas and find them fantastic. They spend so much time talking to you and making sure you understand exactly what your condition is. You really couldn't ask for a better team. Good luck.

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HELLO XXX

Thankyou for your message of support......I cannot wait, but as I said i am also a little scared. Apart from anything else I have just got engaged and my other half is so supportive and caring, which is lovely, but i dont know to what extent he has read up on Lupus. So I think when he comes with me to my appointment he will be as worried as i am

I just want answers!!! i want pain relief if this is how my life is going to continue i at least need it to be bearable

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I was scared, too. The appointment brought back memories of my first day at school. And even though mommy was there, I still felt like a crying six year old. It turned out that school - diagnosis aside- was a far worse experience! Don't worry, with Lupus you just can't afford to stress yourself. Good Luck :)

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think of all the questions you want to ask write them down take this with you with a pen to write answers dont be scared see it as a positive start to whats going wrong best of luck let us know how you get on x

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