in a bad way

helenk

Hi, im new to the forum and this is only my second post so please forgive me if this is in the wrong place or anything.

I have been suffering from complex regional pain syndrome in my right leg from toes to lower back since 2002, OA in my feet for at least 6 years and random widespread joint pain etc since 1997. Everything has become much worse over the past few years and ive had both big toes fused recently due to OA. The latest fusion was my left foot 8 weeks ago and the result has been pretty unpleasant. I now have another 'hot-spot' of CRPS, my feet are painful and swollen and my back and right hip are extremely painful. Ive been severely depressed and close to giving up, under the care of the mental health crisis team and my GP's and ive been referred to the Walton centre in liverpool. I just dont see the point anymore. The only reason im still here is my little girl but there have been times over the past couple of weeks where even that hasnt been enough. i just want to stop and not be in pain anymore. The DWP have decided that im fit for work and have put me in the work related activity group and are pestering me to go for an interview. I cant drive at the moment due to hip pain and the overwhelming panic attacks. Im so anxious i cant think at times. I have to use crutches all the time now. Ive been referred to a social worker to have my home needs assessed as i keep falling and cant do any housework. My entire life is falling apart and no-one seems to be able to give me any hope that things will get better. Im going downhill fast and im really scared. So it was suggested that i join this forum and talk to other arthritis sufferers and see how you all cope and adjust to disability. so here i am. sorry im so depressing.

dreamdaisy

Hello, it's nice to meet you and I hope we can help. There is no need to apologise for sounding so depressing, you have a lot going on and it's a struggle, there's no doubt about that. I wish I could wave a magic wand and make things better for you but, alas, I cannot.

It sounds as though you are getting sorted regarding outside help from various agencies but that won't necessarily help you in the immediate term. When things seem so very dark it takes so much effort to see the positives but they are there - just well-camouflaged. Do you have any friends and family around to help? I am lucky in that I'm seventeen years into this crudola and I know that the dark times pass, but I also take a small dose of an anti-depressant every day to help me cope better with the reality of life with arthritis.

I am sorry that I cannot sound too positive at the moment: my mother died recently and my arthritis is reacting very nicely to the raised stress levels. Arthritis likes stress, I think most auto-immune conditions do. I hope that some others will answer you soon and be more helpful than me. In finding us you have taken a positive step and I hope that others soon come along and answer you. We DO know what it's like and how hard things can be, we get by and you can too, it takes time to find out how is all. Take care. DD

lizzieuk1

Hi Helen,
Welcome to the forum. You are in good company we are all seasoned sufferers, I can certainly relate to your feeling so down at the moment, have had RA for 9 years and been flaring v badly since my son was born 2 years ago, had a miscarriage in March that made it 10x worse and been off work since then, am self employed so relied on ESA to help us manage financially. Has been v grim. But things are looking up a bit, I have started new meds and it is helping a bit already.
I guess what I'm trying too say is when things are really bad they can and will only get better, there is help out there and you will come out of the black hole you're in, talk to friends and family as much as you can, off loading is very therapeutic and when people know how down you are you'll be amazed how much love and support comes to you.
Make sure you tell the docs if you're in pain, keep your painkillers going so you can deal with life and don't try to brave it out, they're there to help so grab it with both hands.
You have a fantastic little girl who loves you regardless of what state your body is in and just needs you to love her and be with her, don't give up the chance to a unique relationship of unconditional love with her and when you feel sad look at her beautiful smiling face and remember you created her, that is one amazing thing to do.
Remember when you're feeling down we're all her to support you and know how hard life with pain can be, we've all been in that dark hole and with help managed to scramble out. Don't let your disease take your life, our diseases may take many things but fight back you can get through this there are lots of good things in life to live for just be determined to win and you will.
(((({Hugs)))))

Numptydumpty

Hi, and welcome to the forum.
You do seem to have a lot going on at the moment. I'm sure the worry of being being put in the WRAG group doesn't help. A few people on the forum are in the same position.
You say you had a fusion 8 weeks ago, that's not long, I guess you're still recovering. Are you still in a cast? I had a wrist fusion last September, so I understand how it takes a while to adjust.
I have RA, affecting most of my joints, and have recently been told I have OA in my shoulder and hip. I too have to use crutches, or a mobility scooter. The RA has affected my hands quite badly, making most day to day things a trial. I'm lucky that both my daughter's are grown up now, I'm sure it's difficult looking after little ones while suffering with arthritis.
You can get through this, we are always here to support you. No one is saying it will be easy, but, with help, you can do it.
It's important to have someone you can talk to, someone who understands. We can't offer practical help, but we can listen, and offer advice and support.
I, personally, have made some very good friends on this forum, I'm sure you will too. They're a great bunch.
Take care,
Numpty

lizzieuk1

Should have said re ESA I would def appeal to go into support group really think you would get it on appeal, get ur consultants etc to write supporting letters for you too.xx

helenk

i really wish i could. even thinking about dealing with that sends me spinning off into a panic attack. im freaking out and that hanging over me is not helping in the least

lizzieuk1

Could you go to the cab they are great at helping with ESA and know just how to word things, would make it much less stressful I'm sure.x

maria09

Hi Helen
Welcome
I'm so so sorry you are having such a dreadful time
You need the support of your mental health team and GPs especially with all the c**p from ESA and DWP who seem to get great pleasure on picking on the most vulnerable! i agree abt trying citizens advise regarding your claim
Also try the helpline team on here
I can't offer any advice just my support
Maria

bubbadog

Hi Helen, welcome to Arthritis Care Forum, you are in the right place for support and guidance. Don't apologize for feeling depressed we all do at times, it's understandable with what you are having to deal with at the moment. I would speak to your G.P as well as the C.A.B about appealing the decision of the ESA. Have you sat down with your G.P and told them how you have been feeling? I'm sure they should be able to help you find light at the end of the tunnel. We are here if you need to talk, hope you feel better soon.