[Jencg]

Hi my name is Jen I am 59 and I live in the UK. I was diagnosed with CFS/ME following a prolonged chest infection which developed into pneumonia followed by pleurisy almost 4 years ago. My GP has continued to run tests and I have been referred to Endocrinology, Neurology and lately to a Rheumatologist. This was the first consultant to take a full family history and I felt very relieved when he actually confirmed that he believes I have Lupus. He gave me the ARC leaflet to read and ordered a lot of blood tests and x-rays.

During my search for a diagnosis, I have been told that 'it's in my head' and that I am depressed. I expect many of you have experienced the same reaction from doctors.

The rheumy has confirmed that I have Raynaud's and Sjogren's. I have to return to him in July when all my results should be back.

Anyway, pleased to meet you all and looking forward to getting to know you.

 

[elisabethm]

:welcome:Jen this is a great site you will be made to feel that you can ask questions.Need a moan then there is allways someone that will get back to you there is also a chat room if you have java you can get into that aswell.Have you been ill for long how does your condition affect you.Hope to here from you again Elisabeth

 

[x_claire_x]

Hiya, well done for being persistent, keep a log of symptoms and any photos that are relevant, ie rashes for the Rheumy..good luck in your search for diagnosis.
Claire X

 

[ROSJAC]

Hi Jen and welcome to this site. Wished I had discovered it years ago when I was first dx with SLE. It has been a great source of info. and support. We already have two things in common... Raynaud's and The number 59!!!
Best Wishes, Rosie

 

[flamenco2]

Hi Jen

Hi there,
You have found a brilliant supportive group here !

So, you UK, me too, greater manchester area.

Im 46 and rheumy more than likely thinks I have lupus (albeit fairly mildly), omg, if i got mild (in agony as it is) god knows what having it bad means ?
Ive been with Endocrinologist many moons (have polycystic ovaries, high prolactin and CHILDLESS thats the morbid part of my entire existence) say nooooooooooo more ..............
Rheumy said i have reynauds, ereyth.... something of skin, my face is red alot, i also have FIBROMYALGIA, had bad horse riding accident 20 odd years ago (in my early 20's) work full time 5 days 37PLUS hours, this my 3rd week SSP (sicknote).
Im now on antimalarial (Plaquenil) Bromocriptine for the hormones
and co-codamol off my own doctor for PAIN.

Im back at rheumy on 14th May (I now need a definate diagnosis of ALL OF WHAT I HAVE) because work are sending me for a referral to medical work doctor (they have a right). LOL

I cannot give up work, and eventually intend to do 3 days (will loose loads money at that) cant help it. work said they cant accomodate me requesting less days (ive worked for them 25 years by the way) they will probably have to relocate me to who wants SOMEONE FOR LESS DAYS. what a joke.

Hope you can sort out all your health issues/and problems, and keep asking the medical people, sometimes they dont say much unless you keep saying stuff.
keep in touch
hugs Diane

 

[onetay]

Jen,
Hi and welcome to the site. You echo almost all of us. Everyone thinks it is in our head but those of us that understand it to the point of knowing you can look fine and feel bad. We all just take one day at a time and do what we can. I for me it was a relief to find this site and I hope that you will feel this way also. I hope to get a chance to know you better also. I hope you are doing well and feeling well.

 

[KarolH]

Hi Jen and welcome to the site.

Yup, we have all heard that it is just in our head, or your depressed, or your just anxious, blah, blah, blah.

Then when things show up in our blood work there is never a apology to follow.

Anyway, nice to meet you and sorry for your dx but sure hope you get on the meds and get feeling better soon. Join us in the chat room sometime.:wink2:

 

[lazylegs]

Hi Jencg,

Welcome to the site. Getting a diagnosis isn't always easy. Part of the problem is so many of the symptoms are vague and found in a number of other diseases. I am happy you are finally with a good doctor willing to search for the right diagnosis.

I am looking forward to getting to know you better. Hope to see you in the chat room sometime.

Take care,
Lazylegs

 

[debatat]

Hi Jen

Welcome to the site, it is full of friendly helpful people who have a wealth of knowledge. I am glad that you are finally getting sorted after a long time. Hopefully once you start treatment things will improve.

Deb

 

[LolaLola]

Hello Jen, Guess we must be near neighbours. I am on the Isle of Wight.
Prof. Hughes has said that women with Lupus,by the time they get seen by the right Doctors, are the most misunderstood and badly treated group of Patients and he is right! The good news is that there are good Docs. out there. It is rather like kissing a lot of frogs before you find your Prince.

A big welcome to you, and you will find plenty of help and friendship here.
x lola

 

[sheila t]

Hi Jen. So pleased that you now have a Doctor who is gonna sort things out for you. I was for 11 years told it was in my head too. Been dx now 20 years. Looking forward to getting to know you too

Sheila x

 

[Jencg]

Thank you everyone for such a warm welcome. Still getting to grips with the forum and reading a lot of useful info here.

I received some good news today. My former employers have granted me ill health retirement (following my appeal) and I will receive my pension a year early (I am 59). I am saddened that I am not able to work as I really loved my job but am realistic to know that I just wasn't up to it due to illness.

Thanks again for the welcome.

 

[spellbinder]

:wavesmile:hi jencg
sorry i missed your first post and didn't welcome you to the board so ... belated :welcome:. sounds like you've gone thru the lupus diagnosis dance, one i wish i didn't have to learn. but it sounds like things are coming together and that you have a good doctor.
i just wanted to hi and congradulate you on early retirement. that has to be a great relief.

take care and keep on posting
hugs and kisses