Rheumatoid Arthritis - disability scores

Happy_Girl_2

Hi

I've had RA for 20 years (now aged 38) and have just been given an assessment for biological (injectable) treatment. My disease score was 7.09, which apparently shows the disease is currently badly out of control.

I was interested to know if anyone else has a similar score, and how much pain you were in at the time, and how much it affected your mobilty/life? My old consultant always used to say I have a very good mental strength which has allowed me to make a good career and take many holidays without mobility aids etc, but I'm finding it harder and harder to not give in to the pain. My new GP says this is understandable given the score, but I'm interested to compare how others are doing. I have RA in every joint in my body except my hips and spine.

Also, the new injection therapy is being hailed as something which is going to allow me to move around much easier once I have been on it a while - does anyone else have experience of it? Is it as good as they say?

LoopyLinz

Hi HappyGirl

I have sent you a pm

Linz

Jojo_the_Tightfisted

We just get 'does it hurt? what's swollen?' and that's it. Mind you, as I have refused Methotrexate as I am in my mid thirties and may be able to have another child for at least another 10 years, I think they have rather decided not to bother with me. They have a rule that everyone must have Methotrexate first for two years before accessing any further treatment. I can't even get a referral for hand splinting to stop my fingers deviating any more than they are already, or physio.


Mind you, the last time I saw anyone at the hospital was about 18 months ago as they keep on cancelling the appointments due to 'timetable issues' (that means, the performance target for initial referrals is in danger of being missed, so if they cancel all the follow ups and use the slots for new referrals, they meet their targets and the management get their bonuses). I might get to see someone next month, but as it's the first week in September (and the consultants' children aren't back at private school until the following week) I'm expecting it to be cancelled again.


Honestly, it's constant pain, just on differing levels. As it's currently attacking my feet, I have fasciitis on one side and an ankle slowly glueing itself rigid on the other. It's also doing my elbows, so I can't carry anything. Everywhere else is already FUBAR.

I get my shopping delivered. I am waiting for an accessible property from the council (estimated waiting time - forever - they have only housed 3 families with mobility problems that aren't terminally ill within the last 5 years.)

It's pretty rubbish really, if I decide to think about the negative effects.

But I go to meditation classes twice a week. I'm taking an OU degree. I take NSAIDS and paracetamol when I absolutely have to (I can't be doing with addictive stuff like Cocodamol/codydramol any more - it took weeks to come off the b&*£($&d things) and I don't drink or smoke at all any more (red wine and spliff are a stupid [and expensive]way of dulling pain). Topical NSAIDS are also very useful as a top up.

But - at my meditation class, one of the teachers has RA and he has been a goldmine of advice on dealing with chronic pain. What it boils down to is that you develop techniques not to fight it, resist it, or ignore it, but to accept it is there and allow it to be in the background whilst getting on with things that actually require your attention right now.

For example, if you have a child with a plaster on their leg which needs to come off, do you ask them to focus upon the pain and slowly tear it off, hair by hair? Or do you normally distract them and whip it off so quick they haven't been able to yelp before you're waving it in front of them, saying 'look! It's all done!'

I pay attention to my joints every day - the pain reminds me to protect them. But it doesn't need much more of my attention than that. So the trick is not to mind.

Happy_Girl_2

Jojo_the_Tightfisted wrote: »

We just get 'does it hurt? what's swollen?' and that's it. Mind you, as I have refused Methotrexate as I am in my mid thirties and may be able to have another child for at least another 10 years, I think they have rather decided not to bother with me. They have a rule that everyone must have Methotrexate first for two years before accessing any further treatment. I can't even get a referral for hand splinting to stop my fingers deviating any more than they are already, or physio.


Mind you, the last time I saw anyone at the hospital was about 18 months ago as they keep on cancelling the appointments due to 'timetable issues' (that means, the performance target for initial referrals is in danger of being missed, so if they cancel all the follow ups and use the slots for new referrals, they meet their targets and the management get their bonuses). I might get to see someone next month, but as it's the first week in September (and the consultants' children aren't back at private school until the following week) I'm expecting it to be cancelled again.


Honestly, it's constant pain, just on differing levels. As it's currently attacking my feet, I have fasciitis on one side and an ankle slowly glueing itself rigid on the other. It's also doing my elbows, so I can't carry anything. Everywhere else is already FUBAR.

I get my shopping delivered. I am waiting for an accessible property from the council (estimated waiting time - forever - they have only housed 3 families with mobility problems that aren't terminally ill within the last 5 years.)

It's pretty rubbish really, if I decide to think about the negative effects.

But I go to meditation classes twice a week. I'm taking an OU degree. I take NSAIDS and paracetamol when I absolutely have to (I can't be doing with addictive stuff like Cocodamol/codydramol any more - it took weeks to come off the b&*£($&d things) and I don't drink or smoke at all any more (red wine and spliff are a stupid [and expensive]way of dulling pain). Topical NSAIDS are also very useful as a top up.

But - at my meditation class, one of the teachers has RA and he has been a goldmine of advice on dealing with chronic pain. What it boils down to is that you develop techniques not to fight it, resist it, or ignore it, but to accept it is there and allow it to be in the background whilst getting on with things that actually require your attention right now.

For example, if you have a child with a plaster on their leg which needs to come off, do you ask them to focus upon the pain and slowly tear it off, hair by hair? Or do you normally distract them and whip it off so quick they haven't been able to yelp before you're waving it in front of them, saying 'look! It's all done!'

I pay attention to my joints every day - the pain reminds me to protect them. But it doesn't need much more of my attention than that. So the trick is not to mind.

I would agree with this. I am doing an OU degree too, and I find it good to keep my mind active. My biggest problem is that my mind has loads of plans but my pain holds me back from achieving some of them. I agree that you distract yourself to make the pain less important in your mind which can make you feel it doesn't hurt so much. That's how I've done what I've done in life so far really, but I've noticed since I've been out of work, the pain has got worse. My factors have increased by 20 points since March, but I feel annoyed with myself for not being able to carry on regardless like I used to be able to!