Feet: Hi can I ask hw come they say feet aren't in RA I... - NRAS

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Feet

Vonnie10 profile image
37 Replies

Hi can I ask hw come they say feet aren't in RA I can barely walk if I go do a bit shopping I mean literally walk around for 30 minutes max my feet kind of seize up, I get in mine feet up still with pain but a bit easier, when I get up I'm literally hobbling on them , so how come doctors say feet aren't included myfeet were fine before all this thanks in advance. I so hope you nice lot are flare free .

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Vonnie10 profile image
Vonnie10
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37 Replies
Mollieharry profile image
Mollieharry

I totally agree with you.thinking back in fact the first signs of my ra(quite a while before other symptoms started) was a feeling like walking on pebbles in bare feet and really stiff ankles.

Vonnie10 profile image
Vonnie10 in reply toMollieharry

Hey mollie yes looking back im certain my feet were the first culprit over 20 yearscago crazy isnt it.

in reply toMollieharry

Just like me, although I also had banana hands too.

helixhelix profile image
helixhelix

Feet are included as RA can really have a big effect on feet. However often doctors aren't interested in your feet as they think they can tell how you are doing from other bits of your body that are easier to get at. And scoring system they use (the DAS score) doesn’t need them to look at your feet.

But insist! You also have the right to be referred to a specialist podiatrist.

There’s a useful section in the NRAS website about feet too, here

nras.org.uk/foot-health

Vonnie10 profile image
Vonnie10 in reply tohelixhelix

Thanks helix im been referred all,over the place lately just been to physio regarding my back and thigh pain I'm like a old clapped at car lately will give it a look .

Matilda_1922 profile image
Matilda_1922 in reply tohelixhelix

I see a podiatrist privately as told can't been seen by nhs

It does seem so unfair.

My first symptoms were my feet hobbling,numbness lumps on the arch of my feet and splaying with toe separation. Gp didn’t have a clue and said it just one of those things . Wish I knew then what I know now.

Rheumy nurse said they don’t check feet for flare ups even she said it was ridiculous.

NeonkittyUK profile image
NeonkittyUK in reply to

I have had several frustrating incidents and conversations re feet and RA. All I can say is GRRRRRRRRR!!

JFlay profile image
JFlay

My feet, ankles and knees are the worst part of my RA 😟 really ache at night, they either keep me awake or wake me up and then in the mornings they are stiff and achey. I had ultrasound on toes (some activity there) and x-rays on feet and knees (normal 🙄) I've had a busy day today and feel like I've walked a hundred miles in ill fitting shoes!

HappykindaGal profile image
HappykindaGal

I have some podiatrist clients. They were amazing during RA awareness week as they all changed their social media to talk about feet and RA. (With a little persuasion from me!). So does it affect feet? It certainly does. Have a chat with one and see if they can help with biomechanics or similar. If you message me Vonnie10, there may be one of my clients in your area and I can ask them to call you for a chat, rather than paying for a consultation at this stage. If that can help you, let me know 💝💕

Need2knowN profile image
Need2knowN

As the others have said, my first symptoms were my feet. I put it off at first as I was training for a half marathon then and was basically putting my body through hell. But it became so bad I had to bum shuffle down the stairs!

Initially I did have X-rays on my feet & hands.

My current Rheummy ignores my other joints and just focuses on my hands and wrists.

I had a double mastectomy 2 weeks ago and since then my RA pain hasn’t been that bad. I wake up all stiff as normal still but the pain isn’t as bad anymore.

My hubby & I think my body is just glad to be rid of my diseased breasts that it can finally breathe and all the meds can actually work better now.

attatel profile image
attatel in reply toNeed2knowN

Sounds like you've had a tough time lately - hope you recover quickly and all is well. Just wanted to say, I had gall-bladder problems last year and before I had it taken out, it was very painful. During that time, I honestly barely felt any discomfort from the RD. Think maybe the brain focuses on the immediate problem? Just glad I wasn't dealing with that as well.

Need2knowN profile image
Need2knowN in reply toattatel

That might be the case! Thank you for your well wishes 🌼

BonnieT profile image
BonnieT in reply toNeed2knowN

God bless you.

Vonnie10 profile image
Vonnie10 in reply toNeed2knowN

Aww God I hope your ok your going through much worst I wish the very best for you .xx

Kjok profile image
Kjok in reply toNeed2knowN

My thoughts are with you, just had lumpectomy and both breast reconstructed, something I'm not sure I would have done at the same time, Looking back I feel I was rushed into the decision, but its done and I have recovered fine. I'm glad your RA seems better, mine has been just the opposite. "Shoulders, knees and toes and elbows" all hurting. I upped my prednisone and tell my self "this too will pass". I sure hope hope your feeling better, it does take time to heal, emotionally and physically, so do take care. Kj

Julia-norfolk profile image
Julia-norfolk

Hi I’ve had RA for 37 years and my feet have been bad recently. I am now having an operation to take out 3 joints in both feet at the bottom of the toes to relieve pressure points. It has been like walking on stones for a long time. Orthodontics haven’t helped much and I have to use padding on bottom of my feet every day. I hate this disease and wish I could wear pretty shoes but that will never happen. The op should help but I might end up with bunions or the toes could go over each other. I will just be glad to stop the pain of the pressure points. Op is sometime in the next few months I’m a bit scared as it’s general anaesthetic but just want it done. My hands are quite good so I should be grateful for that. I’m on methotrexate which seems to work. I suppose after 37 years I’ve been lucky!!

Vonnie10 profile image
Vonnie10 in reply toJulia-norfolk

Julia wish you a quick recovery x

Julia-norfolk profile image
Julia-norfolk in reply toVonnie10

Thank you I just hope op is soon.

juneann profile image
juneann

Hands feet and symetry, the first signs of RA. Definitely the feeling of walking on stones was a biggie for me. I had lots of appointments with specialists for my feet, was prescribed insoles and in fact special shoes which I guiltily admit I never wore (so ugly).

Vonnie10 profile image
Vonnie10 in reply tojuneann

Stop June I cant get any winter footwear was hoping for them boots to be ok .x

Ssmart profile image
Ssmart

My feet are the worst thing currently for me. I’ve seen podiatrist but useless 🙁

I think I need to go back... but feet are DEFINITELY part of RA for lots of us!

I posted a pic of my deformed feet a while back. I’m 39.

All the best to you keep on at them - I’m going to!xxx

Vonnie10 profile image
Vonnie10 in reply toSsmart

My feet are not deformed looking but they hurt so much x

RAlife2018 profile image
RAlife2018 in reply toVonnie10

My shoe life has changed so much in the last year, I can only wear super open supportive comfortable shoes for work since my feet swell throughout the day. As far as non work I have found no tennis helps with the fitted support my feet need except Brooks tennis shoes—most long distance runners wear these. In addition, I bought foot compression bands on amazon and those help when the pain is really bad overnight or with work or tennis shoes—extremely helpful. Hope this helps!

nomoreheels profile image
nomoreheels

Sort of for the example you give, you're walking & using them, or that's what my Rheumy would say. Of course RD does affect the feet. My GP picked up on it straight away, ordered bloods & referred me for formal diagnosis from my feet alone, no other joints were significantly affected at the time. I had crying pain in mine, walking on the outer sides of them was just about how I managed to waddle about getting from one point to another, holding onto things to steady myself along the way. Thankfully I no longer need to walk like that but I still have multiple problems, always will but I was fortunate enough to have the DAS 44 performed for 5 years so problems were addressed until returning to the UK. Finding out they were no longer to be included in my reviews was a concern which continued until I had nothing to report since our last meet except how bad they were. They are examined each time now.

Feet, we can't get around without them (unless we have wheels of whichever kind) they should be examined whether it's difficult to determine if problems are due to using them or disease activity. I appreciate being told there are many bones in the feet but to not take them into consideration even though they don't count in the examination is tantamount to bad practice & poor care to me. So if your Rheumy is like mine was & gives you this poor excuse do really push for them to be checked at each review, hopefully that way you won't incur the damage I ended up with.

Vonnie10 profile image
Vonnie10 in reply tonomoreheels

My them consultant flat out said feet are to complicated and can't be added in .. joke isn't it . X

Recorder500L profile image
Recorder500L

Feet are a big problem. I had an appointment with my RD Consultant yesterday (who is just amazing). My feet have always been a large problem for me for the past 30 years, they are stiff, painful and walking is difficult.

Yesterday he looked at my hands and did the test whereby pressing all the joints in my hands. They too are still extremely painful as is my feet. He told me it was the damage already done to the joints over the past 30 years which is causing the pain to me. I did a bit of walking yesterday and today my left ankle is just so painful. Not so swollen with M&S support knee highs though - glam. Take care.

orange33 profile image
orange33

Hi I wondered why RA Doc wasn't interested when I mentioned my feet. Having X-ray though. Told NHS don't cut toenails anymore but my fingers are so weak so having to pay (don't mind). Abit puzzled about that.

Angels54 profile image
Angels54

Hi I’m the same I can’t get shoes on pain terrible only we know what it’s like .

BonnieT profile image
BonnieT

I didn’t think I had anything to offer but after reading all the posts I decided maybe I do. 30 years ago, I was big into country western dancing. Wearing boots and dancing three nights a week. My feet were bothering me but they almost always had, even as a child. Then a case of shingles that affected my left leg down the sciatic nerve to my toes. Ended my dancing, ended wearing heels, and caused peripheral neuropathy, which in addition to the RA made walking in the morning difficult. Then I found Crocs. They are the only thing that helped me walk from bed to bathroom in the morning. All these years later, they still help me. They aren’t pretty, but they surely help. They also help with my balance and stability. I wear them shopping sometimes as walking on the hard surfaces takes a toll and the Crocs help. I am a half size so I go to the next size up. So I can slip my feet in easier. Good luck to everyone suffering with their feet. By the way, our feet have so many bones and joints, how could a doctor say RA doesn’t affect them?

JFlay profile image
JFlay in reply toBonnieT

I love Crocs too! luckily so far my rheumy checks my feet even though they only do DAS28 🙄

Vonnie10 profile image
Vonnie10

My doctor flat out say the feet are not in to complicated its a joke my feet are the worst offenders oh how in hate this condition x

Kjok profile image
Kjok

Hi, sorry your feet hurt so much, I can relate. I was diagnosed 4 yrs ago, when I went to the foot dr. He referred me to RA dr who did examine my feet and from there did all the tests, X-rays which confirmed I did indeed have it. Several toes bend up at the top joint, some are overlapping and a bunion developed. I have a toes seperator for that and I wear it every day which has kept it from getting worse and stops the pain. Can't go bare foot anymore and shoes have been a problem. However, I finally have found ones that look good, are stretchable and cushioned on the bottom, I can wear them most of the day. They are the travelActiv Mary Jane by Propet.

Amazon carries them, and I have 5 pair in different colors. The white and black have a lacy look and look dressy, have had many compliments. They work for me and may work for you and others with foot problems. Hope you feel better. Kj

Matilda_1922 profile image
Matilda_1922

I was told my elbow pain was not to do with RA. Said no sign of any synovitisand swelling was fatty tissue. Seen by GP who thinks its RA awaiting referral to MSK at my local hospital.

Lolabridge profile image
Lolabridge

Hi Vinnie.

I went to a Summer Feet podiatry workshop this morning and picked up a shoe brochure. Look at

Www.simplyfeet.co.uk.

Finding shoes for summer is such a problem and there are some nice ones on there. I look for good arch support and adjustment for feet swelling.

In winter I wear my custom made orthotics in lace-up trainer style shoes but summer is a problem. I have some Joseph Seibel ‘Tonga25’ sandals and some Vionic slides which keep me going. I wish I could find some nice sandals with removable insoles so I can put in my orthotics. The latter reduce my knee pain too.

Other than that, keeping my feet elevated as much as possible is all I can do at the moment.

I’m sorry you’re suffering so much and hope you can get your Rheumatologist to take notice and help you. I’m intending to get my feet and ankle problems acknowledged by mine at my next appointment.

RAlife2018 profile image
RAlife2018

Yes, my plantar fasciitis arrived the may before an incident in August that led to the eventual dx of RA, psoriatic arthritis and fibromyalgia all at once.

Initially, my foot problems were blamed on poor posture and gait.

I tried different insoles, custom made, but it was apparent, after several 'trials', even to the patient guy moulding, cutting and grinding them, that no improvement was occurring.

Physio did nothing to improve matters, either.

X-rays finally provided irrefutable proof that both RA and OA affect the feet and ankles, as my rheumy at the time eventually conceded.

My current rheumy had me undergo further x-rays a few weeks back, in order to support my PIP claim.

In one respect it was good news, as both conditions have rapidly deteriorated, thus bolstering my claim.

Mixed blessings. Lol.

Bottom line...push your rheumy firmly, but not aggressively in the right direction.

Your get your required results and they attain more knowledge and greater understanding of both you and other patients.

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