Hi I'm new, I need help and don't know where to turn

Onbrinkofdeath

Hi,
I have had Rhematoid arthritis since 2007 and its only getting worse and worse. I can no longer do anything I was trained to do (bricklaying, scaffolding, carpentry or motor mechanics) I am struggling to hold down a job, I am in agony most the winter so take most of it off sick and can't support myself.
I am on methotrexate and have been told that is the best option.
I can't live like this, I can only see one option...
Can anyone help?

[Deleted User]

Hi onbrinkofdeath,

I'm so sorry to read that you are struggling so much but I am glad that you have found us.
I have put a link to the versus arthritis website where maybe you can see about finding a local support group.

https://www.versusarthritis.org/

How long have you been on the methotrexate for?
We are always here so if you do need anyone to talk to then don't hesitate to contact us.

Amanda-Jane

Jackie47

So sorry to read you are going through times. I was on methotrexate for some time and it didn’t work all of the time. Believe me there are other drugs available so don’t accept what’s been said to you. Some times it’s trial and error to find the best that suits you. I too have RA and it seems to change almost daily depending on various factors including stress. I assume you are seen at a hospital? If so is there a rheumy helpline usually run by the specialist nurses? I found that helpline useful if things were bad. It got me in earlier at outpatients . It’s so easy to get bogged down with pain taking over control of body and mine but saying NO I want better is taking back a little control. Don’t accept anything less. Wishing you well.

stickywicket

Can anyone help? Yes. Definitely. You are in a really rough place right now and I don't think it helps that you are, probably, a male because (i)men feel pain more keenly than women as they have more pain receptors and (ii)they are often told to 'man up' which just makes things worse.

I've had RA for a long, long time and OA for a bit less and I can assure you it takes a long time to learn how best to deal with it and where help lies and also to pluck up the courage to ask. You have done the latter and made a good start.

It must be soul-destroying to feel you've had all the working options for which you are trained whipped from under your feet. And, as arthritis thrives on stress, that is probably making things much worse physically and emotionally. When things are very bad we don't eat well and that, too, will take its toll.

Let's find a way out of this. Our Helpline people are kind and knowledgeable but not always here at the weekend so, if you're feeling very dark thoughts and can't get through to them, please ring the Samaritans. There's nothing to be ashamed of. It's what they're there for.

Things can be done with your medication too. And Citizens Advice Bureau (CAB) can give excellent advice about applying for working benefits. And non-working ones.

It really can get better. Please believe me. And we'll be here to help.

dreamdaisy

Arthritis not only affects our joints, it takes regular swipes at our morale, our self-esteem, our pride, our sense of worth. It can also affect our friendships and relationships because people think they know what arthritis is and what it does when in fact they haven't a clue. Why would they? Who thinks about diseases until they have one?

I am in my 23rd year of psoriatic arthritis (I began when I was 37) and the 8th of osteoarthritis but I suspect the latter was rumbling on long before the official diagnosis. For the PsA I have tried a total of four DMARDs and three anti-TNF medications whereas you mention only methotrexate. I live in East Anglia and attend a teaching hospital - whereabouts are you? From your words I do not think you have been served well but of course we don't know your full history. Employment-wise I was self-employed which had its moments, both positive and negative. I began taking anti-depressants in 2011 after my OA diagnosis and still do, they're essential.

I have always maintained that I am more than my disease and I always will be. You are too but you have to find your own way there. There are people out there who can help: our helpline can listen as can the Samaritans, your GP, maybe a counsellor, the CAB for advice on benefits and maybe a better rheumatologist. Small steps is the way, not huge changes. DD

[Deleted User]

Hi there.

Just thought I would add a little extra detail to the replies you have had so far.

On Monday, do pick up the phone and ring our Helplines on 0800 5200 520

Our advisors have a great store of information, contacts and advice and will be able to help you. You can speak to them in confidence and they can give personalised support linked to where you live.

https://www.versusarthritis.org/get-help/

You can also see if there is any information about support groups in your area by checking our online register:

https://www.arthritiscare.org.uk/in-your-area

If there is anything we can do on the forum, please let us know. We know what it is like to live with the unrelenting pain of arthritis. You are not alone.

All best wishes
Brynmor

dreamdaisy

Hello again, I have been thinking of you and wondering how things are going. DD

garyc1

Hi onbrinkofdeath,
I guess you realise they don’t have internet the other side of the pearly gates, so its worth hanging around a while longer.
You know that the low your feeling isn’t good and because you know, you have asked for help. The majority of people on this forum have experienced probably on more than one occasion, what you are going through. You are not alone.
It isn’t only the pain that is debilitating it’s the inability to continue with the life and expectations from a time when vaulting a five bar gate was the norm.
You’re a man of the tools, not unlike myself. As such you know that an amount of planning and prep goes into every job you do. There are times when a job isn’t straight forward and you have to think carefully in order to achieve an outcome. Occasionally there is what appears an insurmountable problem, if you take a step back for a couple of hours, you find the answer!
What you’re going through is just another one of those problems that can be solved.
You have had RA for some time so you are aware of this, and you have also implied that the winter is a prominent period in your pain calendar, this also is the norm with RA. Again you know this, and you also know the great feeling of being painless even if for a short while and how wonderful it feels to be “normal”
(bring on the five bar gate)
I’m not going to tell you that my stick is bigger than yours, it’s pointless (sorry) but I will say I had quite a few years before I decided to take control of my problem. It wasn’t easy it didn’t happen overnight and even as I type I can feel a few annoying twinges and yes I do relapse once in a while. However focusing on the good bits of life makes the bad far less demanding.
Talk to the support group, talk to your consultant demand attention (with the best will in the world, even professionals can’t help if you don’t show you want to work with them and they already know that you’re in pain).
One last thought on Methotrexate, I was using the pills for a number of years and really didn’t seem to benefit from them apart from a really frequent digestive throughput, I asked to go on to the Metaject self-administered injection, and within a few weeks I was out of bed and annoying people. Seems my digestive profile didn’t suit the medication. Worth thinking about?
Take control and get back on the tools change bricklaying for painting and decorating, and as for scaffolding, stick to tent poles and camping, but carry on with the wood butchery just get some tools that do the work for you.
Good luck
Gary