Sjögren's Syndrome or not...

[katerowley]

was diagnosed with lupus 21 years ago.

downgraded to Sjögren's Syndrome about 10 years ago.

had blood tests done in February which he said were okay.

But since then i have been feeling so tired, pressure off job centre/work programme hasn't helped at all. but I'm getting real problems with systemic sclerosis with my feet, to the point i cant stand up for more than 3 hours, cause I'm in agony, and last friday 21/6 i had problems with my eyes, used 2 bottles of drops to stop my eyes going bloodshot and to try and stop the mist effect to my vision.

has a word with the GP yesterday who thinks it might be connective tissue, has it runs in my family, anyone out there having similar problems.

[Lupo30]

Hi Katerowley

Sjogren's syndrome is as you probably know like a sister illness to lupus and a lot of the time they overlap. The tiredness experienced by sjogren's syndrome sufferers is debilitating and there are systemic features to this disease as well, as you probably know.

You really need to be referred to an ophthalmologist to see if you have any corneal ulcers etc as this is a common problem with sjogren syndrome suffers.

The DWP is a horrible organisation and I have had trouble with them myself and this, as you can tell, is not helping your condition. Please don't let them make you worse, stay strong.

Lupo

[katerowley]

Well last week i got a DWP suspension because i wouldn't apply for a £56 job no WTC add on, and my eye problem started the same night, i have got the sanction overturned, but i am on ESA now, but still on the work programme, who have had the nerve to tell me i need to get better doctors, wont repeat what my GP said about that.

[Lupo30]

Hi Katerowley

The government is making it very difficult for the sick at the moment. I know they say they're not cutting funding for the NHS but unfortunately when a lot of peoples' illnesses are incurable or not treated adequately with drugs, we have no choice put to ask for help to live from the government. They are being very mean with their 'strict criteria' or should I say 'impossible criteria' for benefits. Hopefully the support from your GP will make it somewhat easier for you, at least he/she is on your side.

Lupo

[katerowley]

well i think the problem was my advisor has left and they placed me with a 20 yr old girl, because she's got lupus from a child she seems to think I've been there, I've had it all, you will get back to work and be able to carry 26 kg in weight, and I'm looking at her like your in cloud cuckoo land. she was the one that suggested i get new doctors and i need to be on more medication. What i do need is to be on good terms with my doctors and I'm not about to annoy them for her, Well i don't no what happens on ESA only applied last week, my sisters gone through it and doesn't have to work again, don't think i will be that lucky, ESA was a last resort for me, i have been told for years i should have been on it, but didn't want to go there because at the time i didn't think i was ill enough, but unfortunately i am at the stage of either stay on JSA and you pray you can find a job to apply for or get sanctions for years, or see what ESA says.

[charlie007]

I have Sjogrens ,Lupus etc,my eye lids get stuck to the surface of my eye at times .My sleep is disturbed between dry eyes and dry mouth.Also I am exhausted at times,and I am being sent to the occupational health doctor because of my sick time which has put me under more stress.My feet also give me pain and mixed connective tissue disease has been mentioned to me.I hope this helps,best of luck to find answers x

[Thaddeus]

I have had dry eyes for a long time and was told it was Sjogrens along with my APS when I was diagnosed at St.T's. But a year ago or so, I was told by another consultant at the same hospital that it was Sicca syndrome.

Sjogrens follows a path and is limited to what it attacks, while Sicca is more widespread throughout the body.

I have terrible fatigue and a lot of muscle and joint issues. I have lumps under one foot which is like the Dupuytrens contracture , which I have on both hands.

[katerowley]

thank you Mary.

I just thought i would ask because in February bloods were at acceptable levels, (for sjogren's) but within 4 months I'm know walking on crutches and it doesn't sound like sjogrens to me, basically because of the systemic scleroris, my increase in joint pain has been since they started me on adcal for my bones.

[Hidden]

Hi i too have sjogren and connective tissue disease. I am newly diagnosed with Sle.I also have vasculitis of the eye. The connective tissue, as i was told is genetic.I also have problems with my circulation resulting to raynalds.I have lots of pain i my spine,feet and suffer with slurr speach when i am tired. I can relate to how you are feeling. Hope you feel bettet today..x

[katerowley]

well luckily i have kept a record from my diagnosis in 1995 and that said connective tissue disease but my rheumatologist is still convinced my illness is sjogens, but i explained it to my doctor and he agrees with me, its learning more to connective tissue disease. (well both me and my sister have forms of connective tissue so i know ours is genetic) my eyes these week have been really painful, I'm kind of feeling better apart from missing the bottom 2 steps of the plane and kissing the tarmac when visiting my in laws, i was more embarrassed than hurt. I have also had to concede and sign on ESA and i am knowing awaiting the dreaded ATOS.