Winded : Hi all, feeling a bit winded, had RA 11 years... - NRAS

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Winded

Deb-Tum profile image
12 Replies

Hi all, feeling a bit winded, had RA 11 years, fairly well controlled but now have OA in my feet. I’ve lost my ‘omph’ this last year but now even walking is tough and I’m piling on weight. More steroids seem to be only option...plus good shoes! Any advice please?

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Deb-Tum profile image
Deb-Tum
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fusedesigns profile image
fusedesigns

So sorry about your feet - not surprising you are feeling no oomph! Some thoughts...

My feet hurt a lot too and not being that old didn’t want orthopaedic looking shoes. Recently discovered Heavenly Feet ankle boots which are easy to zip in and off and have memory foam inside the sole- like walking on air and i’m walking further. I’ve been gradually piling on the weight since having children and no exercise (no rapid weight loss with onset of RD for me!!) and I am happiest in warm water, so I use a float belt in the deep end of a warm pool ( no impact and good for core) and I manage to do most of what I did in the gym back in the day!!! I like to exercise alone but maybe an aqua class would suit more? Having the energy to even start excercising is another thing ( perhaps some steroids would kickstart that... I always felt like superwoman after the injection, but then the come down was awful☹️) I got a referral from my gp - it’s usually to a gym but they often have a pool too- 12 free sessions- sort of made me do it and all those excercise endorphins are so good for pain and depression I have found. Found my mothers old foot spa to be nice whilst sitting watching tv too! Podiatrist for paraffin treatment- supposed to be really good...

And finally- are u already on PIP? The blue badge is a lifesaver. If you aren’t - sounds like you would get it, if you are, might be time to go for higher mobility???

Good luck with everything - hope your feet improve soon xxx

Deb-Tum profile image
Deb-Tum in reply to fusedesigns

Thx for the footwear tip-just what I need! I also used to do Aqua classes and loved them but when Cimzia worked I got back up to 5 gyms a week and lost 3 stone....which is now back on! Thx for your support xx

helixhelix profile image
helixhelix

I'm curious why you think more steroids are the only option? If they help your feet then that suggests that the problem is inflammatory. So perhaps your RA isn't as well controlled as you were led to believe, and what you actually have is secondary OA due to the RA? Maybe you need to discuss a complete medicines review with your rheumy?

What really helped me was being referred to a podiatrist who specialised in patients with rheumatoid arthritis, and getting custom made insoles plus a range of exercises have made a big difference. From hardly being able to hobble to the bus stop I am now walking over 5km a day. My feet still hurt at night, but they no longer stop me doing stuff during the day.

Deb-Tum profile image
Deb-Tum in reply to helixhelix

Thx, yes that is what I have. I was on Cimzia for 6 years which was fab but then tapered Off this year so I’ve started on Benepali now which is just kicking in....but obv only helps the RA not OA. GP has taken me off Naproxen as it’s considered quite risky long term in my nhs trust so now feet are even worse. My nurse told me yesterday steroid injections into joints best form of relief then good footwear etc

Benepali does seem to help my fatigue and my hands, other joints, just makes me nauseous but that’s a small price to pay!!

helixhelix profile image
helixhelix in reply to Deb-Tum

I get it now! I thought you meant a course of oral steroids.... and yes, injections into the toe joints can work wonders. I've had them. A bit "ouchy" at the time but only a few seconds, and the effect lasts and lasts. Plus only a tiny dose of steroid so doesn't have drastic effects elsewhere.

And yes footwear make a difference but do push to get seen by a proper podiatrist too. I had to wait an age for an appointment but was worth it.

dbestdeb profile image
dbestdeb in reply to Deb-Tum

I’m sorry o hear that Benepali makes you nauseated. I am starting this week and it is my greatest fear. I hope you get to feeling better!

Deb-Tum profile image
Deb-Tum in reply to dbestdeb

To reassure you it’s not very severe nausea and not all the time. I also know everyone reacts differently so please don’t worry and good luck!

Beverley-NRAS profile image
Beverley-NRAS

Hi Deb-Tum,

you may find this section on our website about foot health helpful:

nras.org.uk/our-articles-on...

Beverley (NRAS Helpline)

helenlw7 profile image
helenlw7

I sympathise. I also have arthritis in my feet and one ankle so walking is extremely painful. I was swimming twice a week but my ankle is so bad I can’t do that anymore. On the shoe front I have been through the ready made hospital shoes followed by made to measure ones. Neither really worked. I now source my own shoes - usually clogs. I’m always looking for nice wide ones and buy them when I see them rather than need them. I’ve reduced my steroids to 7.5mg a day, but now have adrenal insufficiency due too many steroids in the past.

My personal view is that arthritis in the feet is the worst area because of the exercise issue.

I do hope you get your oomph back.

Deb-Tum profile image
Deb-Tum

Thank you all! Wow it really makes a difference chatting to people who REALLY understand, appreciate your support so much. I’m off to book joint injections, exercise was my vice so I need it back! Shoes next on my list. Thank you !

thelmar profile image
thelmar

Have a look at Skechers shoes. I don’t wear anything else now and don’t even need my orthotics. Rheumatology podiatrist told me that more and more people are finding they help. Even my husband has been converted as they help his plantar fasciitis.

Deb-Tum profile image
Deb-Tum

So I had steroid injections into my feet on Thursday, I’m already in so much less pain! Getting feet remeasured today then to invest in some good footwear. Thx for all your support! Merry Christmas x

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