Hi new to this site glad to have found it though. Would appreciate a hello from fellow users.

[sewells1961]

Have had lupus for 24 years. I have managed it quite well up to now. Would really like to be able to share my experiences with others thaty understand how crappy this illness can make one feel. I Feel very isolated at the moment and know no-one else that has this illness.

[Sue2803]

You will find many many like minded people on this site, I too was diagnosed some years ago, and have just taken ill health retirement from my job as a staff nurse. Only other people I know with sle are ones on this site, so welcome. There is also someone here who you can talk to, either calmly or rant and rave to get things off your chest.

[sewells1961 in reply to Sue2803]

Thank you Sue2803

[Clairebear]

Hi swells. I'm new too only signed up today. Hopefully I can some good advise and encouragement from fellow lupus sufferers x

[Lulabelle]

Hi Sewells1961,

I have Lupus SLE and Sjorgrens Syndrome and diagnosed 17 months ago - but feel I have had this since I was 16yrs old. I am now 40yrs and yes Lupus is a testing condition and some peoples response are even worse lol! Because they can't always see the affects of this disease physically your deemed to be 'making it up' or at worst a hypercondratic.

Fortunately, the majority of support I have receive from close family and friends

gets me through - and this website which I have found to be very supportive and also I have learnt a quite a lot.

My Lupus is active at the moment and on quite a lot of med's to try and bring this back under control, so the fatigue is at it highest - lol! It just makes you appreciate the days when you almost feel human!

I hope that you find this site helpful also.

Take care, Lulabellex

[collette]

Hi swells pleased to meet you I havent been formally diagnosed yet but have been put on meds which seem to be helping. The main thing Im struggling with at the moment is really bad fatigue. One moment I feel my energy levels are up then through out the day it suddenly drops and feel so tired weak and that is when the pains start but I must say the pain and swelling is not as bad as it was before the meds. Yes I do know and understand how ill this illness can make us feel.

Hi claire bear and welcome ladies to this group. :-)))

[janiceray]

You are never alone with this site & Lupus U/K

Welcome.

[Hidden]

Welcome to the site..collete i am in exactly the same place as you at the mo..no formal diagnosis but am waiting for a rhumatologist appointment..am alsoo in lots of pain from swelling and have been signed off as unfit for work..so have put in a claim for employment support allowance..fingers crossed xx

[Tabbie]

Hi Sewells

Hope this site helps you to express yourself with people who know what you're going through. I have had lupus with anti phospholipid syndrome & organ involvement for 17 years & I too feel frustrated & isolated.

A warm welcome to you

[margareth8537]

Hello Sewells

Just another one welcoming you to the site.

I find it helps me because it makes me realise that I am not the only one and that many others are worse off.

I've had Lupus for years, but diagnosis was quite easy. Medication helps, although other crises make it worse.

Have now been able to retire and can manage better without work pressures. Fatigue very bad at the moment, but I put that down to a few sunny days! Today it's back to rain, which I honestly didn't wish for.

All the best, and I hope you do benefit from the site

Margaret

[Maya23]

Hello Sewells

I've not been well since my twins were born 13 years ago and it's been a long journey -first diagnosed with ME 8 years ago and finally more recently Lupus. I am constantly up and down with it, feeling hopeful one day and despairing the next. I hate how it restricts my life, but so glad and grateful to have a husband and 2 beautiful boys (despite being grumpy adolescents!). I have some great friends too that understand me.

I only recently found this site, and it's been so helpful to have others to share with who know what you are going through.

I know you are going to love it too xx

[Hidden]

Hello Sewells.

Welcome.

No more isolation for you. YOU ARE NOT ALONE.

You've found THE place and THE people who 'get it'.

Chatter away here on site or send private messages. All good.

Reaching out, sharing, and caring helps all involved.

You are a survivor. 24 years. Well done.

Symptoms with symptoms with complication with complications ... relapse/remit on on on ... we here know it well.

What type of lupus do you have?

Where are you located? There might be a support group near you.

Support is here from those who know.

Wishing you less 'crappy' days.

Take care.

[mstr]

Hi Sewells,

A big welcome to this site. I hope you will feel less isolated from knowing that others have similar thoughts and feelings and so truly understand. It really is a wonderful supportive site and I hope you feel more reassured that there are other people out there to help and support. M

[collette]

Hi mrsbeardo hope you get your appointment soon. I have seen the rhumy twice now but have had to go back to my GP to chase up my next appointment as it was due two months ago havent seen him since feb. I am at uni and in september I start my 2nd year and placement. I really hope I can get this under control as I really want to complete my degree. I found my first year a struggle. I really hope you succeed in your ESA claim Ill keep my fingers crossed for you. Have you been put on any meds yet if so what?

[loopy-lou]

Hi Sewells

A very warm welcome to this wonderful site where everyone understands and supports. I was diagnosed quickly 3 years ago with SLE, Fibro, Osteoarthritis and also hypothyroidism 17 years ago. Sorry to hear you are feeling isolated at the moment. Which part of the country are you in? Perhaps there is a support group near you could go to. Totally understand how you feel. Wishing you better days.

[tintin49]

hi sewells and everyone else on this site.. feel very isolated as i have hardly told anyone about my illness lupus sle. at the moment i feel so terrible as the plenequel does not agree with me after 2 months of taking it. i have never felt so bad in my whole life...my gp told me to stop instantly and i have. i can barely walk and my body aches like hell. my headaches and the tiredness is relentless. i know that i am depressed too.

just hope that there is some hope that i will get well soon..

thanks for listening!

[Tia666]

Hi I am new also. So just wanted to say a big hello. X