Hello

emic

Hello people my name is Emily,I am 30 yrs old and I have just been diagnosed with Psoriatic Arthritis. I say just but I really mean about 4 months ago.
I have been in denial I think since my diagnosis and experienced a rather difficult bout of depression.
I have not been able to chat to anyone that has had a similar experience to me as I keep being told how individual it is therefore how difficult it can be to relate to other sufferers.
I have recently had my claim for DLA rejected as I can dress myself and feed myself but this is not always the case. I was bed bound for 4 months earlier this year so I could not work and found dressing and feeding myself very difficult as I can not stand when symptoms are at their worst.
Im not sure if Im on here to get tips,advice or just to be able to speak to people that know what I am going through. I often am told 'well you dont look sick' which clearly shows people do not understand my needs and why would they? I knew nothing of this disease before diagnosis so why should anyone else?
Anyway,lets chat I guess.
Emily x

LignumVitae

Hello Emily,

Welcome to the forum, it's a shame you had to find us but well done for being brave enough to so soon after diagnosis...it took me a number of years! I'm 33 and I know just what you mean buy the 'you don't look ill' comment, as if it would be more suitable for people if you had massive pulsating spots all over your body to prove that there was something going on. 'I may not but my x-rays/ blood tests/ scans do' is one of my responses.

I have a different flavour of arthritis to you but there are other psoriatic arthritis people on here and I am sure one will be along soon.

I don't know much about claiming as I am lucky enough not to but from other threads I do know you should fill in the forms as if you were on your worst day. it's so hard though because when you arent on those days, you don't want to think you might end up back there do you?!

LV xx

dreamdaisy

Hello, welcome to the forum and I hope we can help with information and support. I too have PsA and OA - what a lottery to win. :roll:

It's true that everyone's arthritis is different, it's different in the way it presents and affects us but we all share the common symtpoims of pain, lack of energy and depression. (When you think of what we are up against on a daily basis the latter is hardly surprising.) I began my PsA sixteen years ago, but it went undiagnosed for the first five years and by the time I began the meds it was too late really, the damage was done.

Right, I have to make a phone call but I'll pop back later. Take care. DD

elnafinn

Hi Emily

You have found the right place to asks questions, get support and be amongst others that know what you are going through and talking about. Oh the invisible diseases, the worst of the lot, from some angles, because unless you have a stick, a limb in plaster, or something visible for others to see other people do find it hard to get their head around it all.

From what I hear on here it is not unusual to have one's DLA claim thrown out of the window the first time around. :roll: I have also heard that you have to put down you at your worst when replying to the questions -ie on a really bad day.

You look after yourself, stick with us and you will make cyber friends and get lots of support and help.

Elna x

Nicchick

Hi and welcome, this is a brilliant forum!

I've recently been awarded DLA after being turned down earlier this year - I followed the advice of my OH who has had RA for 20+ years and used the worst days and pain that I have and also asked my GP about it ahead of filling in the form and she agreed to tell them how it is when it's awful and the effect it has had on my life - she described me in another 'to whom it may concern' letter as fit, healthy, very active and bright one day and an old lady the next so goodness knows what she put in the report this time! Last time I filled the form in being brave and said that I could do certain things with pain and this time (I'm now so worn out and ground down by it all) I said that a lot of the time I can't do things and that I never manage to do anything pain-free, which is totally true.

I've managed to organise my work so that I can have a couple of rest days - I've become blunt enough with people to tell them that I will have those days even if it inconveniences them and disrupts their plans!

Nx

tillytop

Hello Emily and welcome from me too.

It is very easy to feel isolated when you have arthritis so you have definitely come to the right place! I wish forums like this had existed when I was first diagnosed. Between us we have all sort of different "arthritises" (mine is Rheumatoid) but we all understand the day to day struggles - both physical and mental. Everyone here is very friendly and you will be made very welcome.

Thinking of you.

Tilly xxx

valval

welcome it such a shame you had to find us it hard to get your head around you should never fill the forms in your self take them to cab they better at it we here when ever you need us val

Soretoe2

Hi Emily, welcome from me too. I have OA and RA but also have psoriais, have had it nearly all my life and had many nasty comments thrown at me when my legs and arms have been covered with scabs in the summer when it's more on view.
I have learnt to live with it all, as you will in time. Mine has eased a bit over the years. I have tried all the prescription creams, lotions etc; I do warn you that some of the creams can thin your skin in time. So mostly I use good old E.45, Eucerin cream, vaseline, calendula cream from Trevano skincare, betnovate scalp lotion, pears soap for handwashing, T gel for hair washing, oats in my bath (strained through the hot tap in an old muslin nappy). Try and keep the scabs well creamed and moisturised.
My psoriasis started to improve when it was found I had a hyperactive thyroid diagnosed, I had the treatment, went underactive and started on thyroxine, since then the psoriasis has been much better. My gp says that lots of people who take thyroxine find their psoriasis improves, to do with the immune response.
I also had light therapy which was very helpful for some years. You could ask your gp if you are suitable for it. You can also be referred to the hospital Dermatologist dept for help and advice. There are also several websites devoted to psoriasis if you google it.
Also do not give up on the DLA. Try again and be very careful to write how bad you are at your worst and what you are unable to do, not what you can. Always take a copy and mention how painful everything is a lot.
I'm sorry that you are feeling so low, there is life with psoriasis it's just a bit different to life without it. I'm sorry about people's reaction too. My opinion of the general public (except all the lovely people here of course) is sometimes unprintable. As always it's the lucky healthy people, who can have no idea what it is like to live with something distressing and painful, that make unnecessary and sometimes downright rude comments and think they are being clever.
Keep your chin up and moisturise, moisturise, moisturise... Joy

dreamdaisy

What wise words from SoreToe2, moisturising is the key. My P crops up on my soles, palms and scalp (they are the only places left on me that the eczema neever got around to visiting!) but unlike Joy I find E45 irritates my skin. I was using a lovely shampoo and conditioner from the B*ody Sh*p, a paraben-and-other-chemicals-free effort but I've had to stop as it required too much rubbing-between-the-palms before application (I have nasty Carpal Tunnel syndrome which will soon be sorted out). I use stuff from the Simple range now and that seems to suit me OK.

I think it's true to say that generally the healthy don't have a clue about how our lives are. They become poorly, go to the doctor, get some meds and get better. We're poorly, we go to the docs and get meds and don't get better. That is a conundrum that even we don't understand from time to time.

Right, I must go and sort myself out as I'm working later this morning and I've chores a-plenty to get done before that. Take care. DD

fowls48

Hi Emily


Welcome to the forum , sorry you are having a rough time , the people here are fantastic , you have come to the right place



Fowls

barbara12

Hello Emily
And a warm welcome from me
I am so glad you have found us only sorry you had to look in the first place, like you just being able to talk to people that understand some of what you are going through can be a massive help.
You take care and I hope to see you posting more very soon xx

bubbadog

Hi Emily, Welcome to Arthritis Care Forum! Sorry your having a bad time of it, take care and welcome again. bubbadog

ShulaArcher

Hi Emily

Just to say Hello from me. I haven't been a member here for long but already have had a lot of help and support. I'm sure you'll find the same.

Very best wishes
Shula

emic

Hi,
Thank you for the replies.
I dont suffer from psoriasis any more,I havent had the skin condition since I was a kid. Thank you for the ideas though.
Really nice welcome.
Emily x

dreamdaisy

Ah, that wasn't clear so I apologise for talking as though you do. A common plaint on here is others not understanding what we are facing but I counter that with why would they? I hve no idea what it's like living with MS or CP. People know things are rough with me when I'm not wearing jewellery (because I can't put it on) and also when my face is a nice shade of pasty grey. Apart from that I guess I'm lucky because the crutches or the rollator alertts people to the fact that all is not well.

I am on a number of meds including an anti-depressant. Have you been prescribed anything yet for either the PsA or the depression? DD