Questions questions questions!

airwave

I have had pain and discomfort since I was young but wasn’t diagnosed till I was 25, with OA, I now find I have had some of the RA symptoms for 30 years but kept getting refused a rheummy’s appointment. As always I try to quantify what is happening to me, it seems as though I have been on the slippery slope for a long long time.

Or am I unlucky or just been saying the wrong things at the doctors?

What is the average length of time between first signs and symptoms of RA to being diagnosed?

What is the average length of time between diagnosis and inflammation being controlled?

How many RA patients get a blue badge or any PIP?

If you have RA how far do you think you can walk?

Do any arthers return to a normal life or is that just a unproven theory?

it’s a grin, honest!

stickywicket

Or am I unlucky or just been saying the wrong things at the doctors?

I think you're unlucky in being diagnosed / misdiagnosed? with OA at 25. Perhaps you did have it so any symptoms of RA were just attributed to that. Perhaps it was RA but very mild. Back then I don't think they used MRIs and, also back then, x-rays involved far more radiation than now so they weren't as quick to offer them. I think my first x-ray was for my TKRs. My first MRI for arthritis was about 2 months ago.

What is the average length of time between first signs and symptoms of RA to being diagnosed?

How long is a piece of string? Sometimes the blood results and maybe x-rays are very clear. Other times they're not. Some go to their GP and, with an obvious blood test result, get referred to a rheumatologist straight away. Others don't go to the GP, don't have clear bloods, don't get referred for some time.

What is the average length of time between diagnosis and inflammation being controlled?

Again, average? Anyone who is lucky enough to hit on the right DMARD for them, first off, may well find their disease under control within months. many have to try several DMARDS and combinations. Some continue to struggle whatever is prescribed.

How many RA patients get a blue badge or any PIP?

How many ask? Or need to ask? Some get by well on meds. I'm not good on PIP but I know BBs are issued due to mobility issues not by disease.

If you have RA how far do you think you can walk?

I've had it since I was 15. Back then, on a bad day, my friends used to help me to school. During good times I actually went hiking. Now I struggle to get round the house using my rollator😉

Do any arthers return to a normal life or is that just a unproven theory?

What's a normal life? In my younger days I went to uni (but had periods in Sick Bay and had someone writing for me in my Finals), then I held down a teaching job (and carried about 40 books home on the bus for marking each day albeit in a lot of pain). I had two sons which is pretty normal though there was no going back to work afterwards. So I did other things.

But, honestly, I have no idea what a 'normal life' is with or without arthritis. Nor do I care. I've had a good one. I think you have too. I'm pretty sure 'er indoors, your kids and grandkids love you just as you are. That's the important bit.

airwave

You’re quite right Sticky, I just need to throw a few things around and get it out of my system! A bit more of thinking since the post started me to wonder though, tidy up the questions and there is a few questions that people new to the decease that would help if they were answered.

So, a challenge to Versus Arthritis, information of a different type is needed?

it’s a grin, honest!

MarkInSussex

Might be able to offer some answers for you;

What is the average length of time between first signs and symptoms of RA to being diagnosed?

Mine took six years, and then only i think because i was admitted to hospital when my legs just gave up, x rays showed that i was walking (shuffling/hobbling) bone on bone as i have no cartilage left in my knees, my hips, shoulders, hands and elbows all show signs of RA, with my left hand being seriously deformed because of it.

What is the average length of time between diagnosis and inflammation being controlled?

I was put on all manner of pills and potions when i was admitted to hospital, my inflammation was finally under some sort of control about 10-12 weeks after admission to hospital.

How many RA patients get a blue badge or any PIP?

I get enhanced PIP for Mobility and standard for Daily Living, I applied for my Blue Badge on Monday of this week and got an email from my County Council yesterday saying it had been approved.

If you have RA how far do you think you can walk?

At the moment, 20-30 meters maximum and even then i have to stop and take a break as im walking bone on bone in both knees and use a pair of crutches for support.

Do any arthers return to a normal life or is that just a unproven theory?

I try to live as normal a life as the limitations of the disease allow, but it aint easy.