Fed up with my feet 😒🦶🦶: Hi Peeps, I am getting... - NRAS

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Fed up with my feet 😒🦶🦶

Moomin8 profile image
Moomin8

Hi Peeps,

I am getting really fed up with my bloomin' feet!! 😖

Every day they are sooo sore. Today it's my left ankle/top of feet area, the other day it was the same on my right foot! It is hot and swollen. Which ever way it is, I can hardly stand, let alone walk.

I was allowed a week of 20mg Prednisolone a couple of weeks back, which gave me a few days off limping.

I find it's getting the better of me and is making me grumpy and tired. I'm not sleeping well with the pain, plus I can't do any form of exercise; can't even walk my poor dog!

I'm back onto 90mg of Etoricoxib a day, which I shouldn't really be taking. I have 20mg MTX (Metoject) 4 x Sulfasalazine and have just started on Rituximab (Rixathon) infusions. I also take paracetamol 4 times a day.

😖😩😕

45 Replies
•

Hi

I know how to feel. The touch of the bed covers aggravate them. You feel that you want to chop them off. I suggested it to both my GP and my Rheummy. Neither agreed it was a good idea!

🤣

Sorry I am not around much. I am admin on a RA Facebook group.

This is my right foot, for comparison, which is more or less behaving today.

Comparison
Snackjack profile image
Snackjack in reply to Moomin8

Oh yes vastly different, I think we all can tend to get a bit grumpy when in constant pain so don't feel to bad about that. When it is your feet playing up, as you say you cannot even walk your dog and not being able to walk, it does restrict life somewhat. Hope that you can get some relief soon xx

Moomin8 profile image
Moomin8 in reply to Snackjack

I have a f2f rheumatology appointment next week. I don't think there's anything they can do to be honest.

Snackjack profile image
Snackjack in reply to Moomin8

Oh I am so sorry to hear that, hope the foot swelling does go down so that you can walk a bit. Sending virtual hugs and best wishes xx🤗🤗🤗🤗

Oh love. I know how you feel. This looks exactly like my ankles. Sending hugs xx

I had similar problems with my feet for ages and they still play up from time to time - they are definitely my 'weakest' point. I don't know if this would help you, but mine only got better when I went to 25mg maximum Metoject dose last year. Might be something to consider..... Hope you get some relief soon

MaryEmma2 profile image
MaryEmma2 in reply to Dobcross1

What is Metoject please. I am in real pain with both my ankles. Take paracetamol 8 times a day which takes the edge off, but nothing else for my RA. It's getting worse added to all the other joint/muscle pain. I've been on methotrexate, leaufidamide and sulfaselaphane (sorry about spelling) all of which gave me horrendous side effects. Some kind of biologic was mentioned over a year ago rituxlimbab ( or something like that), but then along came covid. I have always had the worse side effects of any drug I have ever been prescribed apart from paracetamol. A couple have almost killed me. Allergies, reactions with other drugs etc. Not 100% sure about biologics because I understand they knock out your immune system and I am not sure that is a good idea in the current covid climate. I can sympathise with the person who suggested cutting off their foot. I often feel that I wouldn't be worse off. I am getting to the point now that I feel so depressed. I seem to get over one problem, then another comes along. Some of the meds mentioned here I have never heard of. I have been under my consultant now since 2011 and I've only seen her a handful of times. Mostly she's on holiday or off sick and I speak to the nurse. Very nice person but not a qualified rheumatologist. I have a rollator, walking sticks and a scooter. Any suggestions would be most gratefully received.

Moomin8 profile image
Moomin8 in reply to MaryEmma2

Hi, Metoject is simply mtx in an injection. I think has a better effect than the tablets.

MaryEmma2 profile image
MaryEmma2 in reply to Moomin8

is mtx methotrexate ?

Moomin8 profile image
Moomin8 in reply to MaryEmma2

Sorry, yes it is 🙂

I have ankylosing spondylitis but it affects all my other joints. I had dreadful swelling of my toes and feet. I was on 20mg mtx but increasing it to 25mg settled it down. Been good for 18 month now

Brilliant! So glad it worked for you too

Great news!

Thanks 🙂

Oh I hear you !!! This is me to a T .. bad days I use my stick to take some of the weight. My new insoles help a lot but I still get bad days . Seems my drugs work on other joints but these problematic babies are another story . Clinic are really not interested . 🤬

Do you have custom made orthotics? They made such a difference to me (as well as the Adalimumab!).What really annoyed me was they "didn't count" for the biologics assessment, they were always much worse than my hands but they "count".

Moomin8 profile image
Moomin8 in reply to Potatos

Yes, I have custom-made orthotics. I know they help, generally, but when my feet are inflamed they are useless 😕

Potatos profile image
Potatos in reply to Moomin8

:-(

marie66 profile image
marie66 in reply to Moomin8

Absolutely. Me too and it’s so painful! My orthotics do help but I’ve given up on real shoes as ankles are huge jus now. M x

Ouch .. I often lose my ankle bone and can’t get shoes on except a very wide pair of trainers when the weather gets really hot and humid. The only thing that helps is me moving more. x

I'd love to move more 😭I'm working full-time, so don't have a choice in the week, but it's killing me.

If you’ve only just started on Rituximab I will keep my fingers crossed that it will get to work soon for you and bring real relief. 🤞🏻X

Moomin8 profile image
Moomin8 in reply to Lolabridge

Thanks. I understand it takes time, but I can't keep going on as I am - it's ridiculous!

Hi I have so much trouble with my left foot / ankle it’s a daily struggle

Much sympathy my ankle is similar but cause is spinal damage. A friend has the same problem as you but x-ray reveal serious arthritis.

I share your pain. It is my left foot that looks exactly like yours, agony if I try and put even sandals on. xx

Know the feeling had this loads a while back. Been mentioned how epsom salts helps with aches & pains. I can have baths but I give my feet a soak in it disolved in warm water in a bowl.

All hideous eh?

Twitty999 profile image
Twitty999 in reply to Happy5

I will definitely give this a try! 🤗

Snap! Mine looks exactly like yours. Do you know what causes it or is it just part of the joy of having RA?

I use crutches to walk around, have had a spur removed, changed medications, sleep with it elevated and still no joy with mine being less angry. I sleep with a fleece now instead of a quilt as I can't bear the weight. Mine is going through a stage of keeping me awake at night at the moment so I am getting pretty deperate to chop it off as well.

I hope we get some relief soon.

I'm presuming it's RA. I have an appointment this week, so if I get any inside info I'll let you know 😉

Luisa1987 profile image
Luisa1987 in reply to Moomin8

Hi I dont have RA but i do have lupus and my feet and ankles are swollen and painful every day i was sent to an orthopedic surgeon as i have spurs under my right heal. He said i had plantar fascilitis but as i was waiting ages for scan and to see him my friend lent me her REVITIVE machine and using that morning and night has improved my feet and ankles a bit i'm sure but i have been eating healthy too as i was diagnosed with Diabetes a couple of months ago and i am determined not to take any more meds. I have lost 18lbs up to now so i have another blood test in september and hoping the diabetes is curtailed. My brother had a similar machine to my friends which he has given me and i am using that. i got a telephone appointment from the ortho last week and told him they had improved a bit and i couldnt bear any more ops so he has discharged me but said if i dont improve much i can always be reffered back to him. My right foot with the spurs gets really painfull but i'm hoping that will improve with weight loss and machine.

Moomin8 profile image
Moomin8 in reply to Luisa1987

Wow! Well done you, for your determination! 👏🏻👏🏻😇However, having spurs under your right heel sounds very painful 😢My sister hasn't been able to walk on her right heel for nearly 6 months - she's been told she has severe planter fasciitis. She doesn't have an autoimmune disease, like me, thankfully. Unfortunately, she has been signed off work since about April, just after she had returned to work after shielding finished (she's had a splenectomy) and nothing has worked to relieve the constant pain. I'm wondering if she might have spurs 🤔She has an appointment at a specialist in hospital this week so I'm hoping they will come up with some results. She's insistent that she doesn't want an operation because, some years back, she was involved in a near-death car accident and endured multiple burns (along with losing her spleen) for which she had multiple operations. The trouble is - if that is the only option, surely she wants to be able to walk again? I get it, honestly I do, but for me - I just want some sort of normality 😒

Luisa1987 profile image
Luisa1987 in reply to Moomin8

i know what you mean !! I hope your sister goes on ok. If she has spurs they could eventually wear away. Lets both hope so.

Moomin8 profile image
Moomin8 in reply to Luisa1987

Thanks 🤞

😓

I was told to sleep with my feet raised up on a pillow it gave me some relief. Hope you get sorted out soon.my feet have improved with baricitinib so hopefully your infusion will provide you with some much needed relief 😮‍💨

Sore inflammed feet and ankles are the pits, so debilitating.I do hope you get some relief soon.

Oh bless you lovely. Totally empathise with the swollen feet and ankles as mine are just the same. Hoping the Rituximab starts to take effect over the next couple of months. I too am on 15mg daily dose of prednisolone until I can go back on my biologic. Also take naproxen twice a day and 6 Sulphasalzine daily. I also take paracetamol as well as butrans pain patches and still can’t fully weight bear and swelling not settling. I do try a little walking about as if I don’t they are even worse. Just hoping our meds will soon sort our poorly feet and other joints out. Thinking of you xx

It is awful to have such sore feet you can’t do anything. Hearts.

Totally sympathise. Although mine don’t swell they feel like they are in a ‘vice’ being squeezed and continually feel ‘hot’ inside and bone ache. It makes me feel miserable and keeps me awake at night. The only form of relief is constantly applying cold flannels. Wishing for development of foot transplants, i would be first inline 😬

Me 2nd! 🙋🏻‍♀️

Wow Moomin8.. your picture & comment could have been mine!!.. we are in a right pickle with our feet. I’m no good at writing these things but just want to say, That the Rituximab & 25mg of Methotrexate Metoject sorted me out☺️ Initially my Rhuemy said it wasn’t inflammation as it wasn’t showing in my bloods but as a last resort she would have them scanned (like a baby scan where they put gel on first & run a scanning thing over them?) maybe called Ultrasound? .. anyway no one in the room could believe the amount of inflammation showing on the screen!! It was amazing to see it!…and I was put straight onto Rituximab Biologic!!. It works brilliantly! No side effects☺️ I could only have the one session last time & then next one delayed due to Covid & the Pain & swelling all came back!!. Had another session just yesterday & im now waiting for the “magic” to happen again. Hope yours works for you too🙏🏻 Good luck Moomin8 xx

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