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SAM M
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42 Posts
Discussion Starter #1
Hi all, i havent yet been diagnosed with Lupus however all indicates and just awaiting blood results ! Have been ill for YEARS ! Was diagnosed with Fibro-Myalgia years ago but now think that it is a complication of Lupus ???.

I was on the internet last night looking for new treatments for this as im in severe pain at the moment & stumbled on Lupus it was the pictures of the rash ( My rash ) that interested me. I looked at symptoms and I have them all ( except butterfly rash does this mean it isnt lupus ?) I do get a red rash on my nose but its the rash on the v of my neck and in other places that convinced me especially after exposure to sunlight.

So today i took myself to the doctors with a printout of symptoms & asked the doctor to look back on my history ! and she totally agrees that it could well be lupus she has done blood tests and now we wait .........................
 

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Hello Sam, not everyone has a butterfly rash by any means.
If you do have Lupus you may well feel better with treatment.
Welcome here.
x Lola
 

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I hope you are really onto something now - and may get the right treatment for your condition very soon. :) I also get the rash on my v of the neck, and forearms, and had the facial butterfly rash too. However, only about 50 percent of lupus patients have sun sensitivity or the butterfly rash. Certainly not a pre-requisite for diagnosis.

Even if the bloods are negative, you still have options. You can see a dermatologist and inquire about a biopsy for the skin. We've had a few members diagnosed this way when blood results were negative. An expert rheumy familiar with lupus would also be a big help.

Best wishes to you and glad to have you here! Welcome!
 

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SAM M
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42 Posts
Discussion Starter #4
Thank you both so much for the welcome as im sure you know it can be a lonely place in your own body sometimes even with lots of people around you so good to be able to talk with people who REALY understand. The doc prescribed some new painkillers today so im realy hoping for a not so painful nights sleep and feel better tomorow as have 2 ten hour shifts ahead !!! Thanks again will be back soon.......
 

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SAM M
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42 Posts
Discussion Starter #5
Me again just quick off to work ! DNA Antibodies have come back positive and am severly anemic !!! Thank you to this website where i found everything i needed ! Back Soon ttfn ;)
 

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Hi Sam and welcome.

Congratulations on your detective work;)
I hope now you have a real diagnosis treatments will help you feel better.
 

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Pollianna
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Hi Sam, thank goodness you got some bloods done. I am not a great fan of the Fibromyalgia diagnosis as I had that 10yrs or so ago. I knew what was going on with me didn't fit the diagnosis but it sure prevented me from getting further tests done for many years :(

Here's hoping you get some treatment soon, P xx
 

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Hi Sam and welcome to a great place.
I am so glad you got the blood work done and sure hope you get results soon.
Wishing you luck and please let us know how you make out with the results.

Join us in the chat room sometime.
 

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Administrator
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:welcome: Sam

I am glad you have found the forum and hope it is useful for you. Please feel free to post any questions you might have. The members here are very friendly and more than willing to help if they can. Also check out the chat room. The chat room is a great way to get instant feedback and meet new people along the way.

Take care,
Lazylegs
 

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The Other Illinois Tammy
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1,193 Posts
Sam,
Hi and welcome to the site. You will find a lot of information on the site and it is experience not research, as you should know lupus affects each person differently. I hope that things turn out ok with your tests. I also hope that you feel better soon.
 

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Hi,
Welcome from a fellow "newbie"... I agree with Maia, seeing a Rheumatologist has helped...at least it is a start...and a huge comfort to have this support site! I am so new on the treatment, can't tell if it is helping yet...but I know to be patient (am trying to be...) Hope you feel better soon...
I
 

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Hi Sam,

Welcome to the site. Nice to meet you. I hope you find out, what is ailing you.

I am sorry you have suffered, for years. Hopefully, with treatment you will begin to feel better soon..

Best Wishes,
Sandy
 

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Hello Sam
Odd as it seems, congratulations to you. It sounds as if you are well on the way to being diagnosed and hopefully quickly getting effective treatment and feeling much better.
Fibro isn't considered an autoimmune condition and is found independently of lupus although about one third of those with lupus also have fibro. I have read that fibro and lupus aches and pains can resemble each other.

All the best

Clare
 

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SAM M
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42 Posts
Discussion Starter #14
Hello again all, thank you so much for your support. Went to the doctors and after telling me it was the anti DNA antibodies tests that came back positive it turns out it was the ANA results that came back positive !! and they didnt do the dna ones as id asked as i know these are more specific for lupus !!!.:eek.
Anyway along with my medical history and the ANA results coming back positive its still looking as its Lupus. My GP has now reffered me to a reumatologist ( i know ive spelt that wrong lol ! ) and again we wait. The only thing is i have a real fear of hospitals & tests & am not looking forward to it hope there isnt any horrible tests that i,ll have to have done ?? :sad: Be back soon and again thank you all ! :)
 

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Hi Sam,

Most likely the Rheumatologist will want more blood and urine. The anti DNA will probably be included in the blood work done. Nothing scary there unless you hate needles.

Good luck with your appointment. Let us know how it goes.

Take care,
Lazylegs
 

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Agree with Lazylegs...when I had my first Rheumy appt., lots of paperwork, a thorough physical and interview ( which was good to have someone listen so much...) and then some blood and urine tests...Now waiting to see the eye dr. next week, for some follow up tests regarding the Sjogrens...So, as needles don't bother me, it was ok...Now if I have to have surgery...being put "under" with the anesthesia...that is a whole different story...Good luck to you,
I
 

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SAM M
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42 Posts
Discussion Starter #17
Help !!

Really not coping well. Exhausted, confused, in pain making mistakes at work ! Im even to tired to talk ive really had enough now ! No support from family or friends noone seems to understand. I am always the strong one i hold it all together but i cant at the moment i just wanna sleep and sleep ! cant be bothered to explain to anyone. My poor daughter said to a friend of mine the other day that her mummy is always moody and to tired to do anything with her ! I really try went to macdonalds with her yesterday and just sat slumped and glazed over coulndnt pull myself out of the daze its horrible like being locked in a cupboard but i dont have the key to get out out ! Waiting for the reuhmatologist appointment anyone know how long that will take ? Sorry to be so negative :sad:im not normally but cups normally half full but definatley half empty at the moment im so unreasonable aswell mood swings are terrible angry sad feel like im going mad !!!!
 

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Hello Sam and (((((((hugs))))))) to you

I think we've all been there with the "help, I'm not coping". I know that doesn't help you much but we do understand and we did all come out the other side :hug:

I'm wondering if there is any way you could get a little time off work? You sound just like me when I was trying to keep going before I had a diagnosis and I just simply couldn't any more - just sheer total exhaustion :(

Have you told your GP that you're feeling this bad and have you chased up on that rheumy appointment? Saying how long it will be before you get your referral is difficult. I think it all depends on where you live, who you're being referred to...many things. In the meantime you musn't hesitate to get in touch with your GP and say how bad things are. Hopefully he will be able to help.

I think that anybody gets quite negative and suffers from mood swings when they are simply being asked to do something that they can't. There is just a point where we can't any more.

Please call your GP, don't just "sit and wait". That makes things seem even worse. Taking action of some sort and asking for help can make a huge difference.

:grouphug2:
Katharine
 

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I think Katharine gave good advice here. Call your GP and let them know how bad your feeling. There may be something they can do in the meantime to help you feel better until you can get in to see the Rheumatologist.

I am sorry your having such a tough go of things right now. Your not alone in how you feel. Many of us are where you are now with the pain, fatigue, etc...

Hang in there and please call your GP. Let us know how you get along.
 

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SAM M
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42 Posts
Discussion Starter #20
Katharine;539607 said:
Hello Sam and (((((((hugs))))))) to you

I think we've all been there with the "help, I'm not coping". I know that doesn't help you much but we do understand and we did all come out the other side :hug:

I'm wondering if there is any way you could get a little time off work? You sound just like me when I was trying to keep going before I had a diagnosis and I just simply couldn't any more - just sheer total exhaustion :(

Have you told your GP that you're feeling this bad and have you chased up on that rheumy appointment? Saying how long it will be before you get your referral is difficult. I think it all depends on where you live, who you're being referred to...many things. In the meantime you musn't hesitate to get in touch with your GP and say how bad things are. Hopefully he will be able to help.

I think that anybody gets quite negative and suffers from mood swings when they are simply being asked to do something that they can't. There is just a point where we can't any more.

Please call your GP, don't just "sit and wait". That makes things seem even worse. Taking action of some sort and asking for help can make a huge difference.

:grouphug2:
Katharine
Hi Katherine thanks for your reply and its good to know others have been here ! Ive booked a week off work starting next saturday 3rd April so just got to get there ! I wont have time to get to the docs until next monday so hope i,ll feel better by then if not then i,ll make an appointment, but i always come out of the doctors feeling worse anyway as im always fobbed off with no action ! so i try and just keep doing what im doing. Thanks for the hugs much appreciated i feel better venting on here ! Will see how i cope for the next couple of days and if not getting better i will get to the docs sooner and will have to take some extra time of work. Thanks again for your reply and i,ll be in touch :) xx
 
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