Possible Rheumatoid Arthritis - need some hope

[joeschmoesmum]

Hello fellow mums,

I have been to GP with hand stiffness and manageable pain and she strongly suspects a diagnosis of RA. To cut a long story short I am freaking out! Still waiting for blood results etc, but need some hope.

Does anyone have, or know anyone who has, RA and still manages to live a relatively 'normal' life (whatever that might be)? I have two young children (one with special needs, so v demanding) and a full-time demanding, yet flexible job and feel like my world is falling in on me at the moment. Scared of how it will affect my life as a mum, and scared of various complications down the line.

Any words of hope very, very much appreciated.

Thank you

Everyone's journey with RA is different. However, these days there are some brilliant drugs that are available and you no longer see the same degree of deformities as in the past.
Please try and get a referral as soon as possible to a Rheumatologist. Early treatment can make a lot of difference.
Please don't worry.

Thanks, deecrepid.
The words 'chronic illness' are forever in my mind at the moment. I am wondering how I am ever going to cope (as I was struggling to cope with everything when healthy...)
Anyone else out there, who is managing to live a full life with RA?

I have Psoriatis Arthritis - was diagnosed a few years back at about 37/38y.

See a Rheumatologist asap - get a referral. mine came back quickly. They will do various tests - x ray, blood tests, maybe an MRI, etc.

I take a lot of medication. It can take a while to get the right ones and right doses. It is really important to get the medication, ime, as they help to prevent/stop the damage to the joints, which is what can cause the bigger issues especially in later life. Mine affects several joints - its the form of arthritis that causes this. Many other forms don't.

There are times when I do have a fair bit of pain and aches, but it is manageable with medication - I dont take time of work, etc. though it can impact on my ability to do longer walks or exercise when tits laying up. For me, cold and damp weather make it worse.

I love warm, dry weather as a result - I try and book at least one winter sun break each year!

I live a normal life. Yes, sometimes I'm in pain but i have a lot of meds available to me to help with that too.

Be warned though - arthritis fatigue is a real thing and that can have a temporary impact at time. You have to listen to your body a bit more, an take your medication properly. And keep up with the regular appointments.

Remember though the 'chronic illness' isn't as scary as it sounds.

Chronic just means that it is always there - its not temporary.
And the illness doesn't mean the same as being sick/poorly. Medical Condition would be a better description.

Aragog, thank you so much. Yes, I am keen to do whatever it takes to lead as normal a life as possible. Indeed, the fatigue scares me, but actually it might make me better at listening t my body. 'Self-care' never high on my list - now I will have to rethink perhaps.
And yes, I see what you mean - sometimes words can be scarier than the reality. Thanks again for taking the time to respond.

How old are you, OP? Sometimes conditions such as hand stiffness can be caused by fluctuating hormone levels in perimenopause, rather than RA. In this case, HRT can help. If you think you may be approaching the perimenopause (irregular periods, difficulty sleeping etc), mention it to your GP when she reviews your blood results with you. Perimenopausal stiffness and aching is usually more easily treated than RA.

Oh my goodness, theconstantinoplegardener, I spent the last few months wondering if I was pre-menopausal as my cycle got longer, then shorter (23 days!!!) and my periods got crazy heavy. I put it down to breastfeeding my toddler - despite the fact that actually my periods have always been so so regular and even with exclusive breastfeeding (every 1.5 hours) returned after 3 months.
Of course, oestrogen related arthritis would be way preferable :) Are you a doctor? Do you have experience of this?

Thanks for taking the time to respond.

Not a doctor but perimenopausal myself! Tiredness and aching joints seem to be fairly common but lesser known symptoms of perimenopause and the stiff joints can sometimes be misdiagnosed as RA. So its worth letting your GP know if you think this is a possibility - as you say, oestrogen-related stiffness is less of a problem than RA.

Good luck! I hope it is that for you, and that it's transient and easily treated.

See if you can get a referral to a Hand Therapist OP.

In the meantime try and refrain from heavy activity with your hands, avoid carrying heavy bags, wringing cloths and twisting jars open. try to look at ways to make things easier around the house eg buying a lighter Iron (or even better outsource the ironing!)

Soaking your hands in warm water (or even better wax baths!) may give you some temporary pain relief. Gentle exercises are important as well though to keep your joints mobile.

Compression gloves such as the Isotoner ones sold by Totes can also ease pain.

Arthritis research UK is a brilliant charity who provide lots of help and support.

Don't panic

The pain is actually quite manageable at the moment (and my joints don't seem/feel inflamed) just very stiff and very slightly swollen.
I am not so worried about the now - it seems this is manageable. It is the thought of a degenerative chronic illness that scares me.
So actually, Serin your best advice might actually be 'don't panic'.

Thanks so much all!

I have rheumatoid arthritis, I was diagnosed in 2011 at that time I could barely walk, it affected my feet and legs.

I was referred to rheumatologist at hospital and to be honest I barely know I have it now, once they've got the tablets right, which can be a bit trial and error.

I have a flare up occasionally but a phone call to the hospital and a steroid injection in my bum and I'm good to go.

Αccountant222 your words are so soothing. Sounds like it is well-managed and you have a pretty normal life. Thank you for giving me hope!

A good source of information is NRAS (National Rheumatoid Arthritis Society) it was founded by Ailsa Bosworth who has RA. The website has loads of helpful information and makes the firm distinction between Arthritis and Rheumatoid Arthritis. They have a helpline which is excellent.